MP's Journey

Marissa's Obituary and Contribution Information

2010-06-16T22:50:00.000-07:00

Here is a link to Marissa's obituary that was published in the Chicago Tribune: http://www.legacy.com/obituaries/chicagotribune/obituary.aspx?n=marissa-rae-prizant&pid=143060996

If you feel like you want to contribute to fight this terrible disease, we are asking that donations go to the Ovarian Cancer Research Fund (http://www.ocrf.org/) in Marissa's memory. Every dollar contributed is a dollar closer to a cure or at the very least and early detection method that will spare other women Marissa's fate.

Marissa Has Found Peace...

2010-05-17T09:22:00.001-07:00

To Marissa's dear family and friends...

It is with a heavy heart that we inform you that Marissa passed away early this morning at 5:29am. One Journey comes to an end and the next Journey begins for Marissa. We hope that you take solace in the fact that she found a place of peace around midnight, and from there slowly transitioned into a deeper and deeper sleep with softer breaths with each inhalation until she finally took her last breath and passed quietly with a look of tranquility and a smile on her face. She was surrounded by her family, with soothing shamanic music playing softly in the background.

Rest in peace Marissa. We love you more than words can express. While we are on this earthly plane you will continue to live on in our hearts, memories, stories, dreams, and souls... until we meet up with you again in a warm embrace when we make the Journey to the other side.

Peace be to you all.

Sean, Michelle, Bill, Michael, and Hobbes

Update

2010-05-15T11:27:00.000-07:00

Marissa has been home for two weeks now and has been in the care of hospice. They are doing a great job and are very compassionate and responsive. She is as comfortable as she can be - the acute pain that she had when she was in the hospital has not been an issue since she has been home. She is uncomfortable from bed sores and the severe swelling of the legs and abdomen due to edema, and she has a harder time breathing at times due to many factors related to her decline, but all in all she is resting peacefully.

We want to thank everyone for the amazing outpouring of support that you have shown over the past weeks, months, and years as Marissa has done battle with this horrible disease. The cards, the visits, the offers to help in any way possible, the food for the family, the flowers, the prayers - it all means the world to Marissa and her family. She has the best friends, family, and support system that anyone could wish for. Thank you.

Marissa is home from the hospital

2010-05-04T09:38:00.001-07:00

She got home on Friday night after a lengthy stay. We are all happy to be back home and not facing yet another meal at Au Bon Pain. :) She is up and down with her pain/discomfort level, and we are trying to make sure that she is comfortable as possible.

Thanks for all of your thoughts and prayers.

Update

2010-04-24T21:31:00.000-07:00

Marissa is still in the hospital. Her liver function and kidney function showed signs of leveling off which is good news. Her electrolyte level is close to being in balance as well. She is still suffering from edema (fluid retention in her abdomen and legs) which is causing discomfort, and a significant amount of pain in her back and hips that they are still trying to figure out how to get under control in a way that we can administer at home. The pain is really the only thing keeping her in the hospital at this point, and I think we are close to getting it dialed in. The target date for her to get back home is Tuesday.

Thank you for all of your continued thoughts, well wishes and prayers. Thanks to all who have called her or visited her while she has been in the hospital. And thank you to all of our family and friends who have either offered or been able to give us their generous support. This means a lot to us, and we want to let you know how grateful we are.

I will let you know when she is back home again.

Update

2010-04-15T15:38:00.000-07:00

Marissa has been struggling with a great deal of pain, dehydration, edema, high magnesium levels, etc. over the past week. It has been one of the hardest weeks yet. Unfortunately, today we received a call that she has dangerously high magnesium and phosphorus levels and low electrolytes, so she has been admitted into the hospital. I will keep the blog posted.

Update

2010-04-12T10:32:00.000-07:00

The past week has been extremely difficult. Marissa had a procedure performed last Monday to help relieve the bloating pain she feels from the obstruction, and it turned out to be a very painful recovery. We struggled with several different pain medications and doses that either caused nausea or didn't help east the pain, or in some cases did both. Not only was the incision spot painful, but for some reason she was having bad back pain which couldn't be explained. She is now on a pain patch and is getting an anti-nausea medicine that seems to be working better, although she is still uncomfortable. She is also experiencing some edema complications from the TPN and IV fluids she is receiving, which have contributed to her discomfort level. On the positive side, the procedure did relieve the bloating, so it was successful and once she recovers it will be worth it.

As a result of the procedure and the concern over going nuetropenic (i.e. at risk for infections) her chemo was postponed for another week, and she will now be getting it tomorrow. This does cause some anxiety as it will be nearly two weeks behind schedule, but the procedure had to be done when it was because if she started chemo she would have needed to wait another month for her immune system to bounce back after chemo for them to do it, and waiting a month would not have been feasible given how uncomfortable she was. Anyway, we will be back on the chemo regimen tomorrow after an unpleasant detour.

Thanks for your continued thoughts and prayers.

Update

2010-04-06T15:17:00.000-07:00

Marissa has not been feeling well since my last posting. As a result, she underwent a procedure yesterday that will hopefully give her some relief. She is in quite a bit of pain today from the procedure, but it will hopefully pay dividends after she heals.

On the positive front, her latest CA125 progression slowed. It did rise - from 7500 to 8200 in four weeks period - but this is a reduction in the rate of rise. We hope that this is a indicator that maybe the next cycle of Gemzar (which she starts this Thursday) will either stabilize, or even better reduce the CA125. Obviously the most important indicator is how she feels, and I will keep you posted on how this is going.

Thanks to all for your cards, flowers, gifts, thoughts and prayers.

Sean

Update

2010-03-26T11:23:00.000-07:00

Just wanted you all to know that Marissa is home from the hospital (as of Wednesday evening). We have in-home nurses visiting daily to train me on how to administer the TPN (pretty straight forward), and we will be self-sufficient with the TPN soon. Marissa has gained weight on the TPN and is now 99.8. Getting back over 100 lbs will be a psychological boost I think.

Thanks, as always, for your thoughts and prayers.

Update on Marissa (from Sean)

2010-03-24T10:00:00.000-07:00

Marissa is still in the hospital, but we are hoping that she will be discharged today. The TPN is going well and she has more energy, but her platelet count is continuing to drop from the Gemzar so they didn't want to let her go until it stabilized. It has not stabilized yet but the rate that it is dropping is slowing, and Marissa really wants to go home, so hopefully they will make it happen. We will have an in-home nurse to administer the TPN for the next few days (until I am comfortable administering it) so they will be able to take blood tests to monitor it without requiring us to be in the hospital, which I am all for. For any of you who have spent much time as a patient in a hospital, it is not the place to get any rest, and she is exhausted.

Thanks for your thoughts and prayers.

Update on Marissa

2010-03-19T15:56:00.000-07:00

Quick update. She was admitted to the hospital last night to start TPN, but the GI team had already went home for the day so they couldn't do it last night. All was not lost as she was very dehydrated and low on potassium and magnesium, so they gave her IV fluids that contained these essential nutrients throughout the night.

The hospital does not prepare the TPN solution on site - they send out for it - so the order went out this morning and they will be starting the TPN around 10pm this evening when it arrives at the hospital. She will be in the hospital most likely until Tuesday now (Monday they will teach us how to do the TPN at home and monitor us giving it to her and then if we are comfortable with giving it ourselves then she will be discharged Tuesday). I will keep everyone posted.

Update on Marissa (from Sean)

2010-03-17T17:47:00.000-07:00

Marissa has had a rough couple of weeks since being released from the hospital for the bowel obstruction. Her CT scan results showed that the cancer has progressed, although not at the rate that the CA125 is rising (which is now at 7500). She has however had difficulty eating and keeping food down, and her weight has dropped quite a bit. On the positive side, Marissa has had two treatments with the new chemo drug Gemzar, which can be harsh on the platelet and white blood cell counts, and her numbers so far look good.

However, in order to keep going on the chemo she needs to take in more nutrition and get her weight back up, so tomorrow she will be admitted into the hospital for a minimum of four days to start TPN (total parenteral nutrition, which means she will get nutrition directly into her vein instead of consuming foods and liquids orally). After the hospital stay, where they will dial in the exact amounts of TPN her body requires, she will continue to get TPN at home for the foreseeable future in hopes of getting her strength up and letting the chemo reduce the cancer and allowing her to eat normally again.

We will continue to keep you posted on her status. Thanks as always for your love, support, and prayers.

Update on Marissa (from Sean)

2010-03-03T19:05:00.000-08:00

I wanted to post an update on Marissa. As you probably know from following Marissa's previous posts, the Doxil was not working well as indicated by her CA125 and a CT scan at the beginning of the year, so she switched in January to a chemo drug that she had previously had back in 2006 called Taxol. Instead of receiving it in high doses like she did in 2006, she instead received it weekly in a lower dose (it attacks the cancer in a different way when dosed in lower). We hoped that this was working but unfortunately we learned two weeks ago that it was most likely not working as the cancer marker, CA125, had risen 1700 points while on Taxol. The doctor wanted to go through with two more weeks of Taxol to see if the CA125 showed any further response. We got our answer last week though because Marissa unfortunately developed a partial bowel obstruction from tumors that caused vomiting and she could not eat. As a result she was admitted to the hospital this past Friday thru Monday for treatment for dehydration, as well as for observation, and they did not allow her to eat anything to rest the bowel.

She arrived home from the hospital Monday evening and was allowed to start a "soft food" diet. Things seemed to be going well until Tuesday evening when she once again vomited, so we cut back to a clear diet to let things try to calm down again. Since then she has been feeling better and is back on a soft diet again as of today, so we hope that the partial bowel obstructions have started to let up.

While in the hospital they ran another CT scan and it did indicate that the cancer has progressed, so instead of doing more Taxol, we made the decision today in our visit with Dr. Yamada to switch to a different chemo drug that she has not had had before called Gemcitabine (trade name is Gemzar if you are interested). She will receive this two weeks on and two weeks off, and it will take about a month to determine if it has any effect.

As for clinical trials, this is still on the table but not available now, nor is it a good time to go there at the moment. We did find a couple open PARP slots over the past few weeks but none of them are available to Marissa due to toxicity given the number of previous regimens she has been through. She still is on the waiting list for a PARP trial at University of Wisconsin, but a slot will not open up until May or June at the earliest. None of these are an option at the moment anyway because of the partial bowel obstruction. The PARP trials are oral and until the bowel obstruction is resolved, she can't be on oral meds.

That is the current status to date. Either Marissa or I will try to update the blog more often so you are kept in the loop on Marissa's status.

Take care,
Sean

1/15 Update

2010-01-15T10:33:00.000-08:00

Happy New Year to everyone. Sean and I enjoyed our holidays in Florida with my family and where it was colder than usual for part of the time, it was much better than being in Chicago!!

I went to the doctor on Wednesday to get my results from the blood work and the CT scan. The CA-125 is up to 2092 and there is evidence of disease progression and so the conclusion is that the Doxil isn’t working. I think the Doxil did help some as my CA-125 went down at some point but overall it is not working well enough. So, on to the next step which is to go on weekly Taxol for a short-term solution and hope that this helps reduce the disease and we are looking again for a trial related to the PARP inhibitor. With my current digestive issues, an IV PARP may be a better than an oral along with another chemo agent. Since we looked at trials four months ago, there are many new ones out there and so I hope to have a decision here in the next week or so. Then we have to hope there is availability in the near term.

I am experiencing a broad range of emotions…from scared shitless to numb with some hope in between. This stage is always the hardest when I am in between treatments and not knowing if or what will work. I am experiencing discomfort and so getting on something to help is important. I will keep you posted on what happens next. Your thoughts are prayers are appreciated.

Love,
Marissa

Doxil #3

2009-12-16T09:17:00.000-08:00

Yesterday I had Doxil #3. My blood work was not good enough to do it last Thursday but it worked out this week. Today I am feeling pretty good and will go get a Neulasta shot which boosts the white blood count. My CA-125 came back at 1358 down from 1717 so this is good news. They don’t expect to get accurate reports until between #3 and #4 so to get it early it a good sign. All of this stuff seems unpredictable so I try not to get too excited or worried these days and take it one day at a time. I was starting to feel better before I got the test and so that is what really counts – how I feel.

Sean’s dad, Vernon, has been in intensive care since early Monday morning. His kidneys are failing and after many years with various illnesses including Parkinson’s Disease, it seems that it is his time to pass. Sean left as 4am Monday morning to go to Marshall and we have been talking several times a day. His dad was a great athlete all of his life so his body is strong and he is hanging on. If you know Sean please feel free to reach out to him via email, etc. to let him know you are thinking of him. It is not easy to lose a parent, or anyone for that matter.

My awesome brother Mike is taking care of me this week which we really appreciate. Sean doesn’t have to worry about me and can focus on his dad and we are having a nice time together here. Our trip to Florida in terms of the timing is up in the air but that is ok.. we have really learned to go with the flow these days and this approach comes in handy in these situations.

Take care everyone – enjoy your holiday and have a happy healthy New Year!!

Love,
Marissa

Note to George B.

2009-12-11T08:29:00.000-08:00

Dear George B.

First of all, I have noticed over the past few weeks that you have become a fan of the blog so thanks for reading. I am guessing you found my blog by Googling “UW Parp Inhibitor Trial” or something to that effect and you found me.

We share something in common and that is I am fighting ovarian cancer and so is your wife. I don’t know her details, as you do not know mine, but I do know from your comments that she is on the Parp trial at UW and it has been very successful for her. I congratulate both of you for your fortune.

I know that your comments come from the heart and are genuine. Wouldn’t it be great if all BRCA1/2 women with ovarian cancer could go on the UW trial and be as successful as your wife? Please understand that I have done my homework and consider myself very educated on my situation and have determined that right now is not the best time for me to do this trial. I deal with my situation every day and no decisions are light decisions as you know. It is possible that I may go on the trial at some point in the future and so thank you for your comments but I am asking you to stop sending me the same message one over and over.

Please believe in me that I am making the right decisions for my body.

Kind Regards,
Marissa

Update 12/10/09

2009-12-10T19:38:00.000-08:00

Seasons greetings everyone. There is a lot to catch up on here, it seems like so much has happened since my last entry.

Most important is that I am feeling better. It has not been dramatic, but more gradual. I seem to be digesting better, less of a bloat and stuck feeling in my abdomen so this is a good sign. This is a time of uncertainty in general since I cannot rely on the CA-125 and I will not have a CT scan until early January. Knowing this I am just enjoying myself as much as possible and getting lots of rest. We will be going to Florida with my parents for Christmas and the New Year and I look forward to being with my family.

I was supposed to get chemo today but my white blood cell count is low so I need to find out early next week if we are ok to go. This past round I did not get the Neulasta shot to boost the white blood cells to see if it was needed - I think perhaps it is needed since it is still low. I am disappointed but overall ok about it. Depending on the results of the CA-125 and CT scan we will see if Doxil is doing what it needs to do. Otherwise we will try something else.

I am stronger mentally then I was a few months ago when I learned the chemo wasn't working. I think therapy has done a world of good for me as well as getting out there and continuing to look for treatment alternatives, educating myself on anything and everything related to my health, connecting with friends... living now and not waiting to live...knowing that the pain and discomfort will pass... thanking God or whoever everyday for what I have, which is so much... visualizing my body healing... I am taking little steps up that mountain and I am making progress.

Merry Christmas, Happy Chanukah and Happy New Year to all of you... if you didn't like this year - you get another shot at it in January! I am ready!

xoxox
Marissa

In Loving Memory

2009-12-10T19:30:00.000-08:00

Patricia Blanchette was a wonderful woman who I met during my first round of chemo. I was diagnosed a few months before she was and met her right after her surgery in the hospital. I stopped by her room, all full of piss and vinegar..ready to fight and getting her ready to fight. We became friends, connected by a bond that only the two of us really understood.

I received this beautiful note from her daughter Vicki yesterday and wanted to share it with all of you.

Dear Marissa,

I hope this letter finds you healthy and feel good. I hope you are cancer-free at this time.

Mom lost her battle to cancer this September. She had fought so hard three years ago, again last year and she was about the embark on another round of chemo when things started really flaring up. Her cancer had spread to her chest wall and was affecting her lungs. She was very ready to go. She was at peace with everything. She was home with all of us taking care of her, and that’s all she wanted.

You were such an inspiration to her. You helped her so much. Just talking to you put her at ease with what she was experiencing. Over the past couple of years she would wonder how you were doing. She was afraid to call you – she didn’t want you to know she was sick again. You always stayed on her mind and in her prayers. She always thought you were so kind, sweet and special. And she always prayed you would be healthy.

So thank you for being there for my mom, to help her through the most difficult time in her life. She didn’t feel so alone, she knew she could tlk to you and you’d understand.

I hope you have a wonderful Holiday Season and a Happy, Healthy New Year.

God Bless You,
Vicki Granger

(Part of her memorial)
God saw she was getting tired;
And a cure was not to be
So He put His arm around her
And whispered, “Come with Me”
With tearful eyes we watched her,
And saw her fade away;
Although we loved her dearly
We could not make her stay.
A golden heart stopped beating
Hard working hands to rest;
God broke our hearts to prove to us,
He only takes the best!

I will miss you Pat... and keep fighting for the both of us. xoxo

NYC Update

2009-11-13T09:03:00.000-08:00

Well, NYC and MSKCC was a great experience all around. The visit to Dr. Sabbatini was enlightening and gave us hope that there are options for me in the future. The vibe was great there – everyone from the valet parker to the people who check you in to the doctors was amazing. As a result of the visit, I have decided to postpone the PARP trial and keep trying Doxil to determine if it is working for me. There is no crystal ball and so no doctors can tell me anything definitively and so it is up to me to determine the best way forward. I feel good about the decision and I had my second round of Doxil yesterday. We will know if it is working sometime near the third dose next month.

The apartment in NY was great. We had a great time there and the location was perfect (57th and 3rd Ave). We took a horse carriage ride in Central Park, saw “30 Rock”, 5th Ave shops, Ed Sullivan Theater, St. Patrick’s Cathedral, Wall St, Ground Zero, Little Italy, Bryant Park, NYC Library (from Sex and the City Movie),etc. Not bad for someone who isn’t feeling the greatest. It was wonderful to get out and get some perspective in general.

So now it is a waiting game to see if the Doxil is working and to continue to take care of myself in other ways. I guess it is time to think about the holidays (yikes) and what we will be doing. We really can’t plan too ahead of time but I think it will be Michigan with Sean’s family for Thanksgiving and Christmas in Florida as usual. Sounds nice to me and I let myself plan a little just to have something to look forward to.

I am feeling pretty good considering I had chemo yesterday which is a blessing. I have a dear friend from Paris coming to visit me for two days… she is crazy. Ariane comes next Friday and leaves Sunday (I hope to get her to stay a little longer). We have a beautiful bond from spending time together in Paris years ago and I cannot wait to see her. It is heartwarming just thinking of it. I have so many friends around the world who are thinking of me and somehow I feel that this global coverage gives me some leverage here. I do feel more confident these days that I will manage with this disease and get back to some sort of normalcy in my life. Sometimes it is difficult to see in these uncertain times, but it is literally one step, one moment, one day at a time. I will wake up one of these days and say “I’ve made it”.

Love,
Marissa

NYC - Here we come!

2009-11-03T10:49:00.000-08:00

We’re off to New York City today! My parents are meeting us there and I have an appointment at Memorial Sloan Kettering tomorrow with Dr. Sabbatini. MSK is one of the best cancer hospitals in the country and we have been wanting to go for awhile now. We decided to take a few days in New York and so we rented a two bedroom/two bath apartment in mid-town until Sunday. It is actually less expensive then two hotel rooms and the apartment is about 1300 sq ft. Should be fun!

I haven’t been out of the house much these past weeks so I am a little apprehensive about traveling and being away. Isn’t that crazy? I used to travel for my work all of the time and always loved it. I do have that excited feeling about getting on the airplane today and going somewhere different. I have been to NYC many times but Sean has not and so it will be fun to see it through his eyes.

What I hope for during this trip is to get another perspective from an expert doctor. When we realized the Carbo/taxol wasn’t working in September we talked to Dr. Sabbatini on the phone and his first comment was that I hadn’t tried that much yet in terms of treatment. From my perspective, I felt like my options were quickly running out and after I talked with Dr. Sabbatini, I felt more hope. I would also like to have some fun, take my mind off of the situation and enjoy.

As far as the Doxil is concerned, I do think it is working because I was starting to feel bloat and pain in my abdomen and now, it feels like it is loosening up a bit. I am cautiously optimistic about it as I seem to feel different day to day, but I do feel better overall. Not as good as I did this summer, but I think it is improving. This would be really incredible because then I know I have this option if the PARP doesn’t work for me.

I will give an update next week…

Love,
Marissa

P.S. Thanks so much Bonnie for the lovely flowers and to Margaret for always thinking of me and treating me to dinner every now and then!

Parp Inhibitor Trial

2009-10-27T09:37:00.000-07:00

I have been accepted into the Parp Inhibitor trial at the University of Wisconsin (UW). I will know for sure next week depending on if there are any toxicity issues that come up that would postpone the next dosage. Otherwise, I will start on November 13th. Yes, that would be Friday the 13th… ugh.

This is a phase I trial which means that it has not been tested on humans before. The reason not to worry too much is that there are other Parp Inhibitor trials that have gone through phase I and even phase II trials from other pharmaceutical companies and the doctors say they are basically all the same. This trial is a Merck product.

Parp is an enzyme that heals cells in the body. For some reason, the Parp inhibitor seems to block the healing of cancer cells in some people who are BRCA 1 and BRCA2 positive, killing off the cancer cells while doing minimum damage to the healthy cells. I am BRCA1 positive.

The entire trial process is all about timing. They have to have an open spot and I have to meet the criteria to get in. My doctor feels this is a good opportunity for me and I feel good about trying it. It is too soon now to tell if the Doxil is working but I can always go back on the Doxil and I can’t always get into a Parp trial.

We will go up to Madison and stay with our friends Jill and Tom who live in Middleton which is just north of Madison. We are so grateful to have a place to stay vs. staying in a hotel room. It will make the situation so much nicer for us. Their home is tranquil and beautiful and we love their company and they are so happy to do it… friends are the best, aren’t they?? Did I mention that Jill and Tom are amazing cooks as well…? We may never go home!!

We will be in Middleton for the better part of a month which is cycle I of the trial. I will spend two days during that timeframe overnight in the hospital for round the clock testing and otherwise I will be outpatient. They basically test me all of the time for toxicity and effectiveness traits. If the Parp works I get to stay on it. If it doesn’t, I will go back on Doxil or try something else. I still have options and that is the most important thing right now.

The past week has been tough physically. The CA-125 jumped from 258 in September to 1338 six weeks later. This seems like a big jump, doesn’t it? I can feel the tightness and the change in my digestion so I have changed my diet radically to help prevent any blockages from happening. I am hanging in there though and grateful on a daily basis to have Sean, my friends and family supporting me.

More later… Love, Marissa

Co-existing with Cancer

2009-10-22T09:02:00.000-07:00

Hello to everyone and thanks to all of you that have reached out to see how I am doing and letting me know you are out there, thinking of me and praying for me. It has been the most difficult two months thus far with this diagnosis and I finally decided to go back to my spiritual advisor and counselor, Susan. I have known Susan for over 10 years. I met her when I was divorced from John that many years ago and I truly love her and trust her.

So far so good. This week was my second session. I just needed to cry and talk about how incredibly scared I am of this disease getting the best of me. Not just physically but also changing who I am as a person. Susan really believes I should use the blog in a more creative way and so you may see more writing in the future… I know many of you will be happy about that.

The Doxil treatment was not as benign as I had hoped. It feels different than the other chemo but it still feels like chemo. I also think I am feeling the effects from the cancer. My abdomen is getting tighter again and I am feeling a little nauseous after eating. Right now I am not sure if it is the chemo or the cancer making my intestines less flexible. As I mentioned in my other blog entries, I really won’t know how this is working from the CA-125 and so how I feel and a future CT scan is how I will know. In the meantime, the Parp trial is ready for me to come in November and since it is experimental, I am not sure if I am ready to do this or not. There is no one who can tell me what is better to do and so these decisions are so difficult and cannot be postponed. Today (Thursday) is a week later and I am feeling better so that is good. I lost a few pounds this round but I have another three weeks to go before the next one and so I hope that I can build up my strength again.

When talking to Susan yesterday, she asked me how I have changed from the cancer and I remembered the things I used to think about. My next vacation (always a priority!!), my next goal at work, a new house, new clothes (retail therapy is still a really good thing for me even now), perhaps even compare my life to someone else (a demon from growing up on the North Shore)… and now – I think about having enough time to enjoy my husband, my friends, my family… maybe go somewhere on a trip with Sean at least one more time, will this be my last Halloween, Thanksgiving, Christmas… I am a sponge, taking in everything and wondering. This situation takes me to a deep and sometimes dark place but it also does bring more clarity to my life. I need to allow myself to feel these feelings without paralyzing myself with fear and let me tell you, it is hard. I always felt that I could make a situation better, any situation. If I analyzed it, took responsibility for my part in it, I could solve it. This approach just doesn’t work here and I have felt at a loss as to how to handle it. I am entering a new phase where I learn to co-exist with cancer, always hoping to eradicate it, but learning how to live with it.

Let’s hope over the next few weeks Doxil is my friend and cancer’s enemy….

With Love,
Marissa

Update

2009-10-14T13:27:00.000-07:00

Tomorrow I start a new chemotherapy drug called Doxil. If I am fortunate, the drug can be very effective with little in terms of side effects. If not, there are some side effects that will be uncomfortable such as peeling skin on hands and feet, mouth sores, etc. Since there is no crystal ball, there is no telling what will happen.

The last week or so I have started to feel some tightness in my abdomen and so it is definitely time to get started. Doxil doesn't always impact the CA-125 immediately and in some cases, people did not experience a decline in their CA-125 until after treatment was finished and successful. CT scans will need to be used to determine effectiveness and I think I will feel it if it is or is not working. The treatment is once a month and should not impact my hair (which is coming in at a turtles pace)and in general should be benign compared to the other chemo. Lets hope it works!

I am also on a waiting list for a Parp trial at the University of Wisconsin if this drug doesn't work and there are other options in general so we will keep on going here until we find the answer.

I am looking forward to getting on something new as this waiting around is for the birds, it really sucks not to know what I am doing. I am working hard to keep my spirits up and my employer has been very understanding by allowing me to continue on disability while I figure out how to contain this disease.

I am not sure what I would do without my amazing husband. Sean is there for me every minute of every day and he is always positive, encouraging and hopeful. I am so lucky to have him as my partner. I love you so much honey! xoxo

Keep on praying and thinking of me out there... I need all of the good spirits I can get. I will keep you posted on how things are going.

With Love,
Marissa

9/26 Update

2009-09-26T11:33:00.000-07:00

A lot has happened in the past two weeks. It seems that I am now platinum refractory which means that my cancer is no longer responding to the Carbo drug I have been on since April. So, what happens next is anyone's guess right now. What I do know is that I have options which is good but not necessarily easy when it comes to making a choice of what to do.

There is still some standard treatments that I can try which include other chemo agents that are not platinum based such as Taxol and Doxil. They have their own potential side effects which is something to consider. There is no guarantee that these will work but they certainly could work, at least for awhile. The other options are trials where there are experimental drugs and/or drugs that have yet to be approved by the FDA and there are hundreds of options here but I do not qualify for all of them. A few exciting options are the Parp trials and the trials involving a drug called Avastin. The Parp has shown to work with BRCA positive cancers such as mine and Avastin is a drug that I would like to use but it has a risk of bowel perforation and right now, the cancer is on my bowel so this is not ideal at this time. The trial drugs seem to have fewer side effects if they are effective and so this is something that I would like to try. There is a Parp trial at UW (University of Wisconsin) that opens in December. I went up there Tuesday and I am now on the waiting list. I could stay with my friends Jill and Tom who live in Middleton which would be amazing. Short term I have to go on something to keep the cancer from growing but still not sure what one I will try.

I am waiting for a few more opinions - Sloan Kettering, University of Chicago (different doctor than Dr. Yamada), MD Anderson and then we have calls into other hospitals that have trials I may be interested in.

The past few days have been very intense for me and my family and I really haven't been reaching out to anyone right now. The past few days I have been sleeping because of my general lack of sleep and anxiety that I have been going through. I think next week I will be better as I need to make a decision in the short-term here and I am always better when I am executing the plan vs. trying to determine what the plan is...

A friend of a friend of mine, who happens to be a cancer survivor and who has more life experience than I do, reminded me this week that if I can hang on through the difficult parts, there can be some amazing things that come out of these tough times. He is right and it is not easy but it is not impossible either. Just know that I am regrouping now and will be back on the battlefield here soon. This seems to be my calling and I will answer to it as long as I am able.

Thank you for your love and support.

Love,
Marissa

Update - 9-18-09

2009-09-18T09:44:00.000-07:00

Ok, well here is the update. The CA-125 is now at 258 from 159 and the CT scan shows evidence of disease around the bowels, intestines and stomach area which is where it was in April. Since the April CT scan when my CA-125 was 1934, everything looks better of course, but it probably looked even better when my CA-125 was at 53 a few weeks ago.

The cancer is coming back, I am officially resistant to the carboplatnum drug which does happen and now plan B needs to be executed. Plan B is not very straight forward however so Team Marissa has been conducting a lot of research and in the next few weeks I will decide the course of treatment I will take. It will most likely be a trial of some sort and most likely not at the U of Chicago. For example, there is a trial at U of Wisconsin and I have an appointment on Tuesday thanks to Jill who has been throwing her weight around to get me in earlier (love ya Jill!).

My emotional state is pretty fragile right now. I feel like every time this happens I lose a part of myself to this disease. I am not alone in this battle as many other women with this disease are in the same boat as I am. Desperately running around trying to find the right mix of treatment that will keep the cancer in control.

I will keep you posted on what happens. Many thanks as always for your love and support.

Love,
Marissa

Latest News

2009-09-08T08:34:00.000-07:00

Greetings everyone. I did complete my sixth treatment last Thursday and am finally coming out of my chemo fog. I wish I could say how relieved and happy I am feeling because I finished my last chemo, but unfortunately my CA-125 test last week went from 53 to 159 which is not the right direction. Dr. Yamada has been out of town and so the doctor on call said to go through with my last treatment to see what happens. So this is what we did.

What does this mean? Well, it means that I take another CA-125 test September 16th when I go and see Dr. Yamada and then we see what the situation is. The CA-125 is all about the trend vs. an individual number. Could the number be an anomaly? Yes, but not likely. What is likely (being the expert that I am) is that I am becoming resistant to the chemotherapy I am on. This is not unusual but I was hoping it would not happen to me. So far, this treatment has been very successful coming down from a CA-125 of 1934 to 53 in four treatments. We were all surprised with the last test results.

I have many options going forward (different chemo treatments/clinical trials) so I will keep everyone posted on what happens. I am feeling disappointed and scared, but by no means down and out. I have been doing this now since April and I was letting myself get excited about some time in remission and now, I just don’t know. I remember how much pain I was in prior to chemo and really don’t want to be there again and of course, I want to live longer and live with some quality. The past days have been hard but as I start to feel physically better, my mental state improves as well.

That is it for now – I know how much all of you are supporting me through this and I feel bad to have to write less than great news. As my friend Hien told me, it is ok to lose a battle here and there as long as I win the war.

With Love,
Marissa

One more to go

2009-08-20T09:42:00.001-07:00

September 3rd... put it in your calendars because that is my final treatment. Can you hear the sigh of relief??

My CA-125 is at 53 after four treatments and we will see what the next one brings right before my last treatment. I am doing well - resting and tinkering around the house trying to take care of Sean when I feel ok. I have been doing a little cooking this summer, venturing into mexican and asian foods, etc. It has been a peaceful time and I really appreciate the opportunity to focus on my health and nothing else.

My back to work date is October 5th and I am excited to see what I am doing next. I will be going into work next week to begin discussions on this topic. It is hard to believe that I will not have a team to go back to which makes me sad, but I am focusing on the future. Hopefully a future of good health and new adventures.

Love,
Marissa

Four down...

2009-07-13T09:25:00.000-07:00

Two to go! I had #4 last Thursday which was three weeks from my last treatment. This is the first time that happened as all of the others required four weeks due to my labs not being up to par. My CA-125 is down to 70 from 131 so I am headed in the right direction. In general, I am in good spirits with occasional down periods. I am taking it easy and focusing on my health and little projects around the house.

Love,
Marissa

June 17th Update

2009-06-17T10:31:00.000-07:00

Sean and I had a nice weekend in Marshall visiting Sean's parents. We went out to dinner Saturday night and then had lunch with them on Sunday and headed home. I really love the opportunity to get out of the city and to experience a small town like Marshall. In some ways it is sad because the town has been hit hard by the economic situation. Small towns are so simple and beautiful and I think we all can use a little simplicity in our lives.

I have been feeling really good lately. Since I am anemic I lose my breath easily climbing up the stairs (we live on the third floor so that happens even when I am in shape)and I am sleeping a lot but other than that, my health feels the best that it has in a long long time. My digestion is better controlled and my stomach doesn't have the stiffness that it had which hopefully is a sign that the cancer is shrinking!

Tomorrow (Thursday) I go in for some blood to help my levels and it looks as though I will be able to have chemo right afterward. On Monday my levels were at 88 from 50 and they need to be at 100 to have chemo so cross your fingers I can do it. I know it seems a little crazy to want the chemo but the sooner I get it then the sooner I am finished.

Mom and Bill come today so we will all have Father's Day together which will be nice. I appreciate their company as I am going through treatment and it allows Sean to focus on work. They are also encouraging and have so much energy that it makes us look like slugs... it is good to have new energy in the house once in awhile.

Our friend Sylvain from Paris is in town this week. He worked with my team for a year a few years ago and we have all stayed friends. He came over a few nights and played music with Sean and Hien. We went to see Patricia Barber at the Green Mill on Monday and we were so excited to be out of the house. We only stayed one set but it was amazing to hear great jazz and be reminded that they are right down the street. Last night Hien brought over his drum kit so you can imagine how the neighbors enjoyed it! Music is so healing and in general, having music and creativity in our lives has helped our spirits tremendously.

I still have cards to go through and this week I received three bottles of wine from Mark Schabel, a SRS alum! What a treat and how thoughtful! I will start writing about some of the cards I have received because they are so amazing and inspiring, I hope they inspire others. I feel encouraged about my progress and the general state of my health right now. It reminds me that when I am feeling at my worst that there is always an opportunity to feel better. Sometimes when I am in the moment it seems like I will never prevail and then somehow I do. Something to think about the next time you are feeling helpless or hopeless.

Love,
Marissa

CA-125 Results

2009-06-12T13:26:00.000-07:00

I received my latest blood test results today. My platelet count is still low and I will need to get a blood transfusion next Thursday. Hopefully I will be ready for another chemo treatment by then but we will see how it goes. The best news is that the CA-125 is down to 131. Yay!

Sean and I are off to Marshall MI to see Sean's parents tomorrow- it is a short ride and I am glad to be able to join him and see the family.

Overall, a great birthday week. I do wish I could get on with my treatment but there are so many positive aspects to focus on and most important, the treatment is working.

Until the next blog entry, take care and have a great weekend.

Love,
Marissa

Latest Treatment Update

2009-06-10T14:40:00.001-07:00

Lots has been going on with my treatment which is not necessarily good or bad at this point. Since I am going through my third recurrence my body is having a more difficult time handling the chemotherapy. My platelet level remains a challenge and the Taxotere is creating neuropathy and so we have been talking with the doctors to figure out what to do. Right now because of my platelet counts, I cannot have chemo this Thursday as was originally planned. I will take another blood test on Friday to determine if I will have it next week.

I am feeling good in general, a little tired, but overall I am getting better control over my digestion and have been able to leave the house and do activities like the grocery store, etc. Sean took my birthday off on Monday and we went to the movies (The Hangover - ok, but not hilarious as I had read) and then out to dinner which was a really big day for me. I felt good and for that day, I felt like I had little to worry about which was great.

Other news, I am no longer in my position at Jones Lang LaSalle. It is a long story and one that I will not write in a blog, but overall I believe that it is the best for me. The company has been very kind and once I am through with treatment I hope to have a different role and try something new which is really exciting. Now I can focus on my health and not the stress of running a department while going through chemo. I am just starting to realize how hurtful the stress has been on me physically as I am now starting to sleep and eat better.

When a door closes, another one opens and I truly believe that this will happen for me. I have faith that it is the right direction.

Love,
Marissa

SRS Project

2009-06-10T14:37:00.000-07:00

The SRS Project was created by my friend Jill Watson who sent out emails to many of our friends, including our grade school Sunset Ridge School (hence SRS project) to send me letters wishing me a happy birthday (June 8th) and to fight this bloody cancer. My response is below.

June 10, 2009

Dear Participants of The SRS Project:

My gosh… what can I say when there is so much to say!

First of all, the greeting card industry sends their thanks for the 144 (and counting) envelopes that I have received starting last Friday. The mailperson (she is a woman) isn’t as thankful as you may imagine. Now this doesn’t mean I have received well wishes from 144 people, as some people were really ambitious and sent multiple cards and I also received large envelopes containing the 6^th grade class of SRS and the 4^th grade class of Lincoln School. I would say overall I am at over 200 individual well wishers at this point which is a truly amazing accomplishment!

There is really no way to list everything I want to say and everyone I want to thank in this note but I can tell how I feel receiving these cards over the past few days and how it will carry me for days and months to come.

I am deeply touched and picture each of you taking the time out of your day to send some of your positive energy to me, someone who you may or may not know but regardless, someone who needs help. I didn’t realize what a powerful force it is to have people fighting for you around the world and what an impact this would have on me. I feel a renewal in my will to fight and inspiration from your lovely sentiment. I also didn’t realize how “cool” I was until the entire SRS 6^th grade wrote to me that I was so “cool” and “strong” and more insightfully “loved”. I hope to get a chance to visit SRS in the autumn and tell them myself what a talented crew they are and how grateful I am to them.

As I am writing this today, I have not opened every envelope yet and plan to open up a few daily as I continue to go through treatment. I have a blog that I will include if you want to continue to follow my adventure and hear more about the letters that I have received. I will keep the SRS project going and make sure all of your positive energy does not go to waste.

And let’s not forget about Jill, the SRS Project - Project Manager… I suspected you surrounded yourself with special people (including me of course) but the outpouring of love and admiration for you has been a huge result of this project, as many in your fan club and friends of friends have rallied for you and ultimately for me. I think the entire state of Wisconsin has been represented! You are fabulous and there are no two ways about it. I love you dearly and thank you for giving me the birthday present that I needed... a real positive kick in my ass. I am renewed and ready to continue the fight and more importantly, to win.

With Love & Gratitude Yours Sincerely,

Marissa xoxoxo

www.mp-journey.blogspot.com

Chemo is Working

2009-05-18T12:26:00.000-07:00

I did not get chemo on Friday as my platelet count was too low so hopefully tomorrow (Tuesday). The good news is that my CA-125 dropped from 1934 to 588 after one treatment. My digestive system is better and I had a relatively nice weekend that seemed somewhat normal. I am feeling better and hopeful that my quality of life will continue to improve despite the effects of chemo... I am lucky to be sensitive to the chemo and feel confident that I will be in remission again soon...

Thanks for all of your love and support.

Love,
Marissa

Improving

2009-05-11T08:26:00.000-07:00

Well, here I am again… the last few weeks were very tough for me but I am feeling better. I am not quite sure what happened but it happened fast. We were in Mexico having a fabulous vacation and then the next week stuff hit the fan. I knew that something was going on starting in March. My abdomen was tight, so tight that I had trouble sitting up straight and raising my arms above my head. I thought that perhaps it was more adhesions which wouldn’t be ideal but better than cancer. No such luck, in fact it really could be both but since the cancer is on the colon, I am hoping that is the only issue that needs to be fixed.

For whatever reason I began vomiting uncontrollably and felt a tremendous amount of pain in my abdomen so I ended up in the hospital overnight and while I was there I had a little chemo.. why not, right? The next two weeks after that were also rough. More vomiting and diarrhea (sorry for those of you that are squeamish) and the latter remains an issue which is just exhausting as you can imagine.

I am doing everything right now I can to get my body strong and under control… I am back on the Chinese herbs which has improved my energy and my mental/spiritual state tremendously. I am always short on magnesium which creates muscle cramps and so I am taking pills for that and Sean and I are watching a lot of movies. We are also spending time with music. Sean is taking another guitar class at Old Town and we bought this very fun software which helps you learn how to sing. We spent about an hour doing it yesterday which creates a lot of laughter and I find us singing around the house a lot more.

I want to thank everyone for your cards, flowers – Angie, thanks for the card and shirt and for your unwavering support! Anyone can call me at anytime – the first few weeks I was a mess and didn’t want to talk but I am better now. I feel very confident about beating this again – could I just fast forward to August and avoid all of the discomfort??

I am in Xena mode – it doesn’t really seem to kick in until Sean shaves my head. The hair started coming out earlier this week so it was time. I have to say that I honestly think I look better without hair. I really love waking up and not having to see bed-head.

I am hoping to get back to work soon at least part time but need to get the intestines to cooperate first. I will keep you all updated and share as much as I can on what is going on here. I hope everyone is enjoying their Spring (my favorite season in Chicago) and enjoying their lives… don’t waste a minute.

Love,
Marissa
xoxo

Update on Marissa

2009-04-27T09:54:00.000-07:00

(This is Sean)

Marissa started chemotherapy last week Tuesday (she will have six rounds of Carboplatin and Taxotere every 21 days), and is having a pretty rough go of it at the moment and is very uncomfortable. We are going under the assumption right now that the tumors are what is causing the issues, and not another adhesion, but there is no way to be certain until the chemotherapy starts doing its dirty work and shrinking the tumors. We do not know what this timeframe will be – we will keep everyone posted of her status on this blog.

For those who don't know what's been happening ....Marissa has been experiencing digestive problems over the last few weeks. That's not to say that everything was perfect before. Ever since her surgery last fall she has been having some difficulties. But it was manageable and she was doing well. Recently her stomach became bloated, distended and tight. A trip to the doctor showed that her CA-125 had shot up to 1934 from 20, indicating cancer activity. The subsequent CT scan showed that she has "matted" or "frosting-like" tumors on her ascending and transverse colon. The pressure of the tumors are apparently causing the blockage symptoms. Surgery is not an option and because she continues to be platinum sensitive the chemotherapy regimen is planned.

We appreciate all of the well wishes, positive thoughts and prayers, and offers to help out. You are all members of the extended “Team Marissa”. Please keep the positive energy coming.

Cold Days of Winter

2009-01-24T11:53:00.000-08:00

It has been almost two months since my last blog and I think it has snowed or has been below zero here in Chicago since that time. Wow, what a long winter it has been. Chicagoans are a resilient bunch I must say and we always find ways to adapt to the situation. For example, we eat a lot of crock pot kinds of food, eat wings, drink beer... oh wait, with the exception of the crock pot food we do this anyway!

Since December 3rd.. let's see... a lot has happened. I went to Michigan to see Sean's family the week before Christmas. We went with a snow storm pending but I was insistent that we go because it had been so long since we had visited. It was a great weekend seeing the family and we ended up getting home on Monday because of the snow storm. The 22nd we left for Florida to see my family or at least we tried to. It again snowed like crazy and after being two planes away from taking off, we waited too long and our de-icing was no longer valid.. ugh. So we went home, confused our cat Hobbes who we had said goodbye to a few hours earlier, and got up the next morning and headed back to the airport. We ended up getting there about 30 minutes before we needed to be at Christmas Eve dinner. We were very happy to get to Florida which was beautiful and warm. Our vacation was great, lots of beach time and eating of Christmas cookies. My Mom did manage to fatten me up (4 lbs in 9 days, not bad) and it was difficult to leave, especially when I am not sure when I will see my parents again.

January 5th I started work - we are off and running this quarter and it feels like I was never gone. I did spend as much time working from home as I can but it is not the same. The team really likes me there and how amazing that feels. I am really proud of what we have built over the last seven years. In 2008 we were running like a well managed team and we delivered some great work. I can see that the team is happy with themselves and that is also nice to see.

With all of that great stuff about my team, the economy is taking its toll on us like everyone else. Sean's company was bought out this week and so his future is unknown. JLL will have a difficult year and so that always creates uncertainty for everyone. I think my cancer experience continues to support me in going with the flow and to pay attention to signs of opportunity and positive change. Nothing stays the same which is good when you want things to change and uncomfortable when you don't. No getting around that, is there?

I have enjoyed this year so far. Sean and I spent last weekend together in San Francisco and Sonoma. We bought and shipped more wine for our urban wine cellar in the basement and visited some close friends. It has been awhile since I have been able to focus on things other than my health. Of course the health aspect never goes away and there is no better reminder to me than seeing my best friend Mari go through her cancer diagnosis. Mari will go through radiation and chemo and it reminds me of how cancer can just strip you of your innocence in such a harsh way. Everything stops, nothing is the same and there is no way to avoid the truth of the situation. I find it strange that I will go through it from a different perspective. A year or two ago it would have scared me, but not today. I want to be with her every step of the way and help her see that she is going to be ok. I want her to see me and know that she will get through it because I did as have so many others.

I hope this blog entry finds you well and warm. If for some reason you are not well and/or warm, take a deep breath and know that you are going to get through it although it may be cold and painful. Spring will be here and the sun will shine and you will find something that gives you hope and moves you forward.

With Love,
Marissa

I'm Home!

2008-12-03T13:50:00.000-08:00

Happy belated Thanksgiving to everyone. I have been home from the hospital for a week now and it feels great to be home. We had a great Thanksgiving with my parents in town and my Mom’s fabulous cooking. Jill, Tom, Mari and Matt were also there which made it so special. They are wonderful dear friends and I am so lucky to have them.

What can I say? Three times is a charm? I just don’t know. When I think I can’t take the pain or discomfort anymore I manage to pull through with the help of all of you out there and of course my family and my amazing husband. I was in a lot of pain for about seven weeks before the surgery and now I am on the road to recovery. I am pretty thin but over time I will be working really hard to put on weight. Sounds horrible doesn’t it??

The truth is that I am not that hungry and well, my intestines haven’t quite adapted to being two feet shorter so digestion remains a challenge (I won’t go into any detail). We are hopeful as is the doctor that my body will adapt over time. So far everything is going about as well as it could.

This week I started working again by phone and that feels good to have some energy to do this. I will officially go back on January 5th and will go to Florida to be with my parents over Christmas. Sean and I feel good about the future. I remain cancer free at this point and so it is nice to not be thinking about that and just focus on healing from the surgery.

Overall I am good so please don’t worry about me. Is it possible to feel stronger after this? Yes, I think it is. Stronger, more grateful, hopeful –all of these things. If you have any spare prayers please think of my dear friend Mari. If you can believe it she was diagnosed with uterine cancer two days after my surgery. She had a successful surgery yesterday (Tuesday) with Dr. Yamada. We are currently making plans to find a beach this Spring to drink champagne, compare scars and toast to our successful journey beating cancer… it is a good plan, eh?

Love,
Marissa
xoxo

Status

2008-11-17T07:10:00.000-08:00

(Sean again)

Sorry for not holding up my end of the bargain to update Marissa's blog with her status. It has been very hectic on many fronts for our families and friends since the surgery. Marissa is progressing, although as expected it has been an up and down process. She is still in the hospital and has not been allowed to take in any liquids or foods yet (they are feeding her though something called PPN where fats and essential nutrients are put directly in the blood stream via IV). They did move her to ice chips on Friday. Unfortunately she has been struggling quite a bit with pain, and there is a delicate balance between alleviating the pain and not prohibiting motility in the intestines, so they are trying different things to make her comfortable. We suspect that she will be in the hospital at least until this coming weekend, but it really depends on when her body starts coming around and she can process solid foods again.

I'll write again when I know more. Keep thinking positive thoughts.

Update on Marissa

2008-11-09T15:59:00.000-08:00

(This is Sean)

Marissa had to be admitted into the hospital Friday and they did surgery yesterday, a little over a week earlier than planned due to worsening complications. It was a long, complex surgery but preliminary results are that it was successful. There was no evidence of tumor, which is good news, but she had significant damage to the small intestine from extensive surgical and radiation induced adhesions as well as radiation damage to the bowel, so they had to resect a sizeable portion of the small intestine and a small part of the large intestine. It will be a long recovery and she is not out of the woods yet but the good news is that she is now stable and should start seeing some relief from the crippling pain she has been in for the past six weeks.

I will put updates on her blog going forward so you know her status.

I'm a Five!!

2008-08-27T13:47:00.000-07:00

I went to the doctor on Friday for my two month check-up and my CA-125 results went down from 7 to 5! I cried from relief and felt the weight of the world melt from my shoulders. This is the first time in months that I have felt this way and I can’t even describe my appreciation to be in a cancer free position… again. Sean and I are busy with work and planning for vacations, meeting up with friends and family… we are just being “normal” and thinking about regular things. It is fantastic and I am going to enjoy every single moment of my next three months of freedom away from worry.

We have started looking for a cabin/cottage in Michigan. Sean is from Marshall and we love it up north. We had a look last weekend but didn’t find anything we liked. I think it may take some time to find something we love but it is fun to look and think about having a peaceful place to go to on the weekends. Speaking of… we are headed off tomorrow to Mari’s cabin in Mio Michigan which is about a 7 hour drive. This is my favorite place in the world. It is truly a special connection with nature – and I can’t wait!

Next month I am off to London for a week for work and then Sean and I will go to Austin City Limits music festival at the end of September… and the plans keep coming…

One more thing that makes me happy is that my family (Mom, Bill, Mike, Aunt Patty, Uncle Bruce, Katy, Brian, Peg, Al, Margaret, Olive, Vernon, Kathy, Forest, Vance, Jacqueline) - you too have three months off from worry about me so use that space, time and energy for something fantastically fun and perhaps even a little impractical! Love you!!

Love,
Marissa
xoxo

August Update

2008-08-13T08:42:00.000-07:00

Hello to everyone. It has been about two months since my last treatment and I feel as though it never happened. It is really unbelievable to me that I can go through such a difficult situation and while I am in it, wonder how I will get through it… and then a few weeks later I am back in my life, feeling good and most importantly, feeling “normal”.

Work is great and busy and I have to stop myself from overdoing it. Sleeping has been a bit tricky and I am not sure why. I am sure part of it is the worry about the future but most of the time I can put that aside and get on with things.

Sean and I have been enjoying the summer. Our kitchen is finally complete with the exception of choosing a paint color for the walls. The back porch is beautiful with the flowers in full bloom and we spend a good deal of time out there after work and on the weekends. I have been to an outdoor concert at Millennium Park, been out to dinner with friends, gone to a cubs game, went to San Francisco for some training… and I appreciate every moment of feeling good and just living my life.

My body is getting stronger – I stretch every night and have been going for walks. I am almost ready to join to gym and start a more rigorous workout. My joints are loosening up and I am more limber than I have been in a long time. My hair… well, it is still very short and I have been playing around with the color which I must say has not been that successful. The truth is that I don’t really care that much about it right now so might as well try new things.

I joined a non-for profit organization called Imerman Angels. Jonny Imerman is a cancer survivor and he has put an organization together to connect cancer patients with survivors for support. I talked to woman in Denver who had ovca 3c and has been a survivor for 10 years. This past week I received my first opportunity to be supporter. The girl lives in Chicago, is 38 and has ovarian cancer. She just had her surgery last week. It reminds me of how far I have come and how lucky I am to be where I am at today. I think I will be very good in this role and finally feel like I am taking steps to give back.

The next test is Friday August 22nd. Yes, I am nervous and worried - there is no getting around it. I have been watching the Olympics and sometimes the look on the athletes face is the look I think I have before I get the results of my test. Terrified! I told Sean that I go through an Olympic event every few weeks!

As for all of you out there… I know you are praying for me and wishing me the best and it makes me cry when I think about how amazing you are to include me in your life and in your blessings. I know I receive regular emails and phone calls from people and Sean hears from you and my parents hear from you… I believe that this collective energy is helping me to heal and bringing good fortune to me and my situation. My Faith is in You and the love and compassion that you offer so freely. It lifts me up and helps me get through every day. I love you all very much.

~M

Good bye to Molly

2008-07-25T09:42:00.000-07:00

Hello to everyone! I have been at work now for two weeks and it has really been wonderful. I appreciate getting up in the morning and getting ready, the commute and working with my colleagues again. I do get a little tired now and them but can feel my energy getting stronger everyday. I find myself starting to plan and think about the future whether it is going to a baseball game, or a trip for work or for play... sometimes I catch myself thinking about the possibility of another recurrence and wonder if I will be able to accomplish the goals and activities that I want to do. I get excited and then I get sad at the possibility that I will have to fight this again or even worse, that my life will be taken away from me altogether. The good news is that as of June 20th my CA-125 was at 7 and as of last week my CT scan is clean. My next appointment is August 22nd.

On a very sad note, my friend Molly from Singapore passed away May 29th from ovarian cancer and I just checked her website today (http://www.wearewonderwomen.com/) to see what was going on. I had a feeling that this was going to happen because of the problems she was having and I was going through my treatment at the same time. I'll be honest and say that I just couldn't bear to look at her website to see what was happening. It was just too scary to deal with during my own emotional and physical struggles. She died almost two months ago and I didn't know it. I feel ashamed. I sit here crying now as I write this and I feel angry at this shitty disease for taking away another beautiful spirit. It makes me feel helpless and yes, hopeless about surviving and that it is just a matter of time before it happens to me. She was so brave and came to peace with her situation. I am no where near coming to peace with this. I'm just not.

That is all I can say for now except I will miss you Molly and your blog entries and your inspiration.

~M

Post Treatment

2008-07-11T15:28:00.000-07:00

Today is Friday July 11th. I am 3.5 weeks past my last radiation treatment and getting stronger every day. The five weeks went slowly as these things generally do. The chemotherapy was harder on my body than I expected. I had to skip one session due to low white blood count numbers. Still, I feel that I did well and had incredible support from my family and friends to get me to the hospital everyday for treatment and to keep my spirits up throughout the treatment. I did need a tough love discussion from Connie which seems to be typical when I am feeling down. I am amazed at how effective she is at kicking me in the ass. I really love her for this.

On June 20th I had my exam from Dr. Yamada and my CA-125 test. I didn’t really know what to expect but of course just waiting there for her to come in the room always creates anxiety for me. Sean was there and was level headed, telling me that we really shouldn’t have any expectations right now since I had just ended treatment. Sometimes the CA-125 goes up because of inflammation created by the radiation and my last test before treatment was 17 (which I thought was pretty good).

Dr. Yamada was in a great mood (and she was quite funny as well) and casually said that my CA-125 was seven. Seven?? Wow, really? Seven? I think I am still saying this to myself. She gave the exam and said it looked “beautiful”!! She was really excited about how everything looked. How many of you can say your doctor said it looks “beautiful”?? I walked out of there on cloud nine – trying to take in the good news without thinking ahead of what may be in the future. Are there microscopic cells out there waiting to get me.. again? But I pushed those thoughts out and Sean and I enjoyed the good news together and a big sigh of relief that once again, we beat it. Now the challenge is to stay mentally healthy without too much worry. Easier said than done.

I did get a surprise the next week. I woke up mid-week with a terrible headache. Usually that means a fever for me and as predicted, I had a fever of 99.8. Later in the day I started to feel sick to my stomach which generally means vomiting.. and as predicted, I started to vomit and my temperature went up to 102. I ended going to the hospital late that afternoon and took a few tests which turned out to be a urinary tract infection working its way to the bladder and kidney. Apparently I am more susceptible to this since the operation on the ureters. I pushed back on being admitted because I can’t stand the hospital. I was feeling terrible and the thought of being there overnight without getting sleep was not what I wanted. In retrospect I should have gone as my temperature got as high as 103.7 and I couldn’t keep down the antibiotics to help with the problem. I spent the entire next day (dragging Sean with me) in the hospital getting hydration and an ultrasound on my kidneys. I was so sick. Dr. Yamada with annoyed with me and rightfully so. If this happens to me again, I will be the first one to admit myself in the hospital. It was not a pleasant experience. Ultimately I was able to keep the antibiotics down and we left for Florida to see my parents two days later than originally planned.

We had a fabulous time in Florida . We sat on the beach, floated in the ocean and cruised around on the boat everyday. We slept nine hours a day and took naps and just rested and enjoyed having some time where we weren’t worried about our health. It really helped Sean’s stomach problem – there was no stress of work or worrying about me. I was so happy that we had this time together and celebrating with my parents and friends and family down there.

This week I have been walking everyday, doing a few hours of work and watching over the finishing touches of our kitchen project. Yes.. it is still going! The backsplash was finished today and I am now waiting for the replacement microwave. It is incredibly beautiful and we will accomplish our last step of painting it in a few weeks. I go back to work on Monday and I am excited to back into things. Sean will be in California for work so it will be a big change but a change in the right direction. I have a CT scan next week as a baseline and an appointment with the radiologist. I am back in the breast MRI study and will be monitored for breast cancer starting again in September. My plans are to get back in physical shape by getting a personal trainer so I can begin to build my body up slowly and in the right way. Along with my full time job at JLL, I will be working full time at staying healthy and strong.

So, that is my story. I realize that I am incredibly blessed to have beaten this again and understand that there may be more to come. Then again, this may be the end and the thought of this gives me hope and inspiration to be the best person I can be, to live one day at a time and to the fullest extent possible. Thank you for your prayers and well wishes and for proving to me that the majority of people in this world are kind, compassionate and caring.

With Love,
Marissa

Start of Treatment

2008-05-15T17:21:00.000-07:00

Hello… I feel a little bad because I haven’t been writing much lately. There is so much to say and so much going on, I guess I will just start and apologize early for my stream of consciousness approach to this blog entry.

I started treatment today (Tuesday) and so that is where I am at the moment. I would like to say the recovery from surgery was a walk in the park but it was not. That was hard. I thought I knew that it was going to be hard but somehow I was still surprised at how hard it was.

The start of treatment really shifted my perspective to the next stage and it is good not to look back. I did it and now on to the next task at hand which is chemoradiation for 24 more days taking me to June 17th. I had chemo today and it feels like I did, a little flu-like and nauseated… more on that later..

If you can imagine, I do have a life outside of this cancer recurrence. I have family, friends, work (thank goodness for my work and team), interests and I have the most beautiful, kind, funny and loving husband Sean… and we have a condo project that we decided to go ahead with despite the recurrence (ask me at the end of it if I think this was a good decision). So the condo is going through its own transformation. After much debate, decisiveness, incisiveness (that was mostly me), planning, ditching, planning, changing and planning (and two bouts of cancer treatment) we are smack in the middle of our kitchen rehab. I almost forgot why I like to go to work everyday and now I am reminded that home improvement can be quite time consuming and frustrating and I could not spend a lot of time doing this. We get overwhelmed at times and my Mom is doing a lot of the work! It is going to be gorgeous but we have a few more weeks at least!

There have been so many wonderful cards and flowers, phone calls, etc. Thanks to everyone. I would like to give Special thanks to Vance and Jacqueline for the “Boo-boo Buddy”, cooking magazine, and hand made paper/post-cards. So many amazing gifts (must mention Graeters for ice cream, they deliver – thank you Christie). Distant family, Jody and Rusty, sent me a hand made quilt with my name and the words “A Woman of Grace”. I feel touched by your sentiment and am so glad my parents have family and friends like you. Many thanks. Thank you all for reaching out and letting me know you are there. I feel loved and supported.

Ok, well I am too tired to continue the stream of consciousness. Just to conclude, I am in Xena mode now and I am ready for tomorrow and the next day… and will keep you posted (hopefully more timely).

Team Marissa is fighting as smart and as hard as they can and it feels right.

Decision Time

2008-04-21T08:30:00.000-07:00

It has been a week now since my second trip back from the hospital and what a difference a week makes. I actually put on a pair of jeans on Friday and got out of the house with my parents! I really felt like I was part of society again… although walking very gingerly and slowly. I feel sore on the outside and the inside and my energy level depletes quickly but I am feeling better and better everyday.

I went to see Dr. Yamada on Friday to discuss my treatment options. The first time this happened two years ago it wasn’t a difficult decision. There was one protocol that was preferred more than the others and I qualified for that protocol so that is what we did. We determined that U of C had the most experience and so that is where I went. End of story. Now… you talk to four different doctors and they may tell you four perfectly acceptable approaches. This is not a decision on what color to paint your house… it is literally a life and death decision and yet there is no one “right” answer. Can you say “stressful”?

The options include chemotherapy and radiation and then a combination of the two. There are so many things to consider. The cancer was localized in the pelvis but they found it in more than one place and therefore radiation isn’t a clear cut answer. I may have microscopic cells floating around which would require chemo. Yet the cancer was localized in the pelvis and therefore I could benefit from radiation as it kills the DNA and increases my odds of not having cancer come back in that particular area – which is important. Doing both full blast will reduce my bone marrow and risk my ability to handle chemotherapy in the future if I need it. This is where I have to take a big step back and listen to my head and my heart. I am the least qualified to make the decision yet it is mine to make.

So my decision is to do something called chemoradiation. I will take low doses of Cisplatin weekly and daily radiation for 4-6 weeks. The chemotherapy helps the effectiveness of the radiation but most likely is not enough to eradicate any microscopic cells but could still be beneficial. I can always do chemotherapy again later or after if I need to but I feel like I need to be bold and try and stop the localized cancer in the pelvis.

I did receive good news that my CA-125 is at 34 which is within range. It was 59 after surgery from a high of 129. It is possible that it will continue to go down as the inflammation from the surgery continues to go down. I should start treatment mid-May allowing a few more weeks of healing. It will be difficult as it will be five days a week. The potential side effects are fatigue, nausea, diarrhea and bowel blockage which happens in 10% of people. I have already decided that this will not happen to me.

Mom and Bill go home today. I have no idea what Sean and I would do without them. I am sad to see them go but also happy they get to go home and enjoy their own space. It has been wonderful having them here and has helped the healing process tremendously. We are forever grateful and love them very much.

With Love,
Marissa

Back home and on the mend

2008-04-16T11:47:00.000-07:00

I wanted to post a quick update regarding Marissa. She spent the weekend in the hospital because of the high fever. The doctors were not able to pinpoint the cause - all of the tests for various types of infections came back negative. They took her off of the IV antibiotics two days early speculating that may be it was a reaction to the anitbiotics that were causing the fever. This could have been the culprit because since stopping them on Monday afternoon and arriving back home, the fever has went down and she has started feeling better. It was a tough weekend in the hospital. On top of Marissa not feeling well, we are all sick of the hospital, no one more so than Marissa, so going back in on Friday was not a welcome trip at all.

We are now waiting for recommendations from UofC and MD Anderson on the next phase of treatments. We are meeting with UofC on Friday and MD Anderson is taking her reports in front of their tumor board tomorrow (Thursday) so we should have some idea of what our options are (and start the decision making process) by the end of this week.

Thanks again for all of your support!

Two steps forward, one step back

2008-04-12T18:35:00.000-07:00

This is Sean again. Marissa was running a high fever yesterday and was not feeling well, so they admitted her into the hospital again last night (Friday). They do not yet know the reason for the fever, but they continue to run tests to try and determine the source. One good thing that came out of being back in the hospital is that the doctor removed the catheter a week early (to try and rule that out as the cause) and she is much more comfortable without being tethered to a tube. Removing it was not as painful as expected either (due in part to Mr. Morphine). She will be in the hospital throughout the weekend for sure, and hopefully they will know what is causing the fever by then and release her. On a postive note, her fever is down a bit this evening (Saturday). We will continue to keep you posted on her status, and let you know when she is back home.

There is no place like home...

2008-04-08T11:40:00.000-07:00

Hello to everyone! I am home and couldn’t be happier about it. It has been a long 12 days as you have heard from Sean and I appreciate all of you out there cheering me on as I stumbled through it. The hospital stay was as good as could be expected. I had a private room which makes all the difference and wonderful support from the doctors and nurses there at U of C. There was one nurse in particular that I bonded with, Jeanette, who has worked at U of C for 28 years. It is interesting how sometimes there is just chemistry between people and we have it. She really saw me suffer for a few of those days and let me know that I was a trooper through it all. We both had tears in our eyes when I left.

For the next few weeks I will be resting at home as I heal from the surgery. I still have a catheter that is attached to two stents in my ureters and must stay there until the 18th when all of this apparatus must be taken out through my urethra… hmm… this doesn’t sound very comfortable does it? Dr. Yamada already indirectly warned me to take some pain medication before I get to the office for her to take it out... some things just defy the imagination, eh?

In the meantime I basically don’t have to get up to pee. (if this is TMI you may want to sign off now..) Since I am forever the entrepreneur I decided that the catheter bag which attaches to the leg could also be used for sporting events. Think about it guys and girls, you strap the bag to your leg at a football game and frankly never have to leave your seat. It can also serve as a leg warmer for those cold autumn days! We could also put the team logo on the bags… yes, I am a sick puppy sometimes... Any investors?

Lastly we are waiting on one more biopsy from the surgery to determine if it is radiation or chemo. We should hear any time now and I am sure we will talk more about treatment and timing on the 18th. I am looking forward to hanging out the next few weeks to heal and am already looking forward to my comeback.. work, friends, etc. Spring should be here any day now and life feels new and fresh.

Thank you to my wonderful family, Sean, Mom, Bill and Mike for being there for me every single step of the way. Team Marissa is alive and well and will prevail!! Thanks to my aunts, uncles, cousins, friends that have been thinking of me and praying for me. I think your prayers have been answered. xoxo

With Love,
Marissa

She's home!!!

2008-04-07T21:36:00.000-07:00

She arrived home this evening and is very happy to be back. We have around the clock IV's to administer, so there won't be much sleeping for the next nine days, but that is no problem. We will all probably be a little grumpy from the sleep deprivation, but it is well worth it to have Marissa back home. More details to follow...

Update

2008-04-05T12:36:00.000-07:00

This was an up and down week for Marissa. She seemed like she was starting to come around on Monday, but then her epidural had to be pulled because it was causing her quite a bit of pain and the doctors were concerned that it was becoming infected (more on that below). As a result, they tried several combinations of pain medications with varying results that caused her some side effects and nausea throughout the week, with some of them not reducing the pain very much. She also was suffering from severe distension of the abdomen as a result of something called Illeas, which is a condition common after intensive abdominal surgery where the bowels stop working and bloating occurs. This condition has not gone away completely, but it is starting to subside a bit. (and did result in us having some good laughs trying to put together a story for the blog late one night asking everyone reading the blog to pray to Fartos, the seldom mentioned Greek god of pressure and bloating... unfortunately, my iPhone browser kept crashing and we couldn't get it posted... which is probably a good thing for all of you out there reading this blog... neither of us have been getting much sleep... obviously :) )

As for the epidural, when the doctor removed it in the middle of the night on Tuesday, she thought she saw signs of infection but did not send the needle off for culture as she should have. Unfortunately, an infection in the spinal column as a result of an epidural can lead to spinal meningitis, so when the Infectious Disease department heard of this mistake, they had no choice but to start Marissa on a course of IV administered antibiotics that have to be given around the clock about every three hours for the next two weeks. The doctors are now trying to figure out how she is going to be able to come home when this is required because it would require nearly round the clock activity from a nurse and/or family member. We will do what we need to do, but for now she still remains in the hospital, mainly because of this infection concern.

The biopsies came back this week as well, but the oncologist has ordered more slices of an area called the omentum because she removed about a 12 inch area of the omentum and they only biopsied one cross section (and she had cancer on the omentum when the cancer was originally diagnosed in 2006), so the story is not yet complete. The news from the biopsies that did come back were that the suspicious area on the appendix was cancer, and the two tumors in the pelvis that were removed were cancer (no surprise there - that was a sure thing), but the cancer was negative in the pelvic lymph nodes. The one slice of the omentum was negative as well. The further slices that come back from the omentum are important because the appendix is still considered to be part of the pelvis but the omentum is part of the abdomen. If the visible cancer was contained to just the pelvis, then their recommendation will probably be an intensive course of radiation for one month and possibly no chemo, whereas if it is in the omentum then the recommendation will most likely be four months of chemo and no radiation, or some combination thereof. One of the other gyne oncologists did say that he has patients where the recurrence has been limited to the pelvis who have had very good success with the radiation, so that is encouraging. We will have the results of the omentum biopsies early next week.

So, to sum it all up, it has been a tough week - the kind of week where it is two steps forward and one step back (with one or two nights feeling like two steps forward and three steps back), but on the whole she is making progress and has been in much better spirits in the past 24 hours. She is still in the hospital and will be for sure until Monday, and possibly longer depending on this epidural infection / antibiotics issue. She is able to get up and go for walks now without a tremendous amount of pain and this is helping to get the body's internal "parts" functioning again, and helps to brighten her spirits.

She does want me to pass on her gratitude to all of her friends, family, co-workers, nurses, doctors, casual acquaintances, strangers, and anyone else who has shown an amazing outpouring of support through cards, flowers, gifts, phone calls, blog postings, words of encouragement, thoughts and prayers. The family wishes to pass on the same debt of gratitude as well. Thank you!!!

Marissa's status

2008-04-01T09:42:00.000-07:00

(posted by Sean)

The first few days of post-op were very uncomfortable for Marissa, especially Sunday. She had to have several blood transfusions because her hemocrit levels were low (i.e. she was losing blood), her white blood cell levels were a bit low, blood pressure was low, she had a slight fever and was in a lot of pain. That said, the doctors felt that she was not in any immediate danger and that this was to be expected after a complicated and long surgery such as hers, but it was tough on her and tough for us to watch. Michelle and Bill have been in town since the day before the surgery, and between myself, her brother Michael, and Bill & Michelle, we were able to provide as much assistance and support as we could over the weekend, but that sometimes felt like a futile effort.

Fortunately, almost like turning a switch, on Sunday evening she started to feel better. Unbelievably, this seemed to be the result of simply getting her out of bed and having her sit in a chair for the second time since surgery. Last night (Monday), she even went on her first walk since surgery - a short walk, but major progress all the same. After a major surgery, especially involving the abdomen, most of the body kind of shuts down, and getting up and moving around is the only way to get things working again. Her vitals and blood markers are all moving up into the normal range again as well.

She is still on ice chips and has not had anything to eat or drink since Wednesday morning, but I think that she is still uncomfortable enough that food is not on the top of her priority list. They also took the epidural (used to control her pain since surgery) out this morning because it was causing her pain and they were worried that it may be getting infected, so they have switched her to IV and oral-based pain medications now. Hopefully as the day plays out, that her pain is kept in check with the change.

All in all, even though it has been a tough recovery, things are progressing well. We will continue to post updates.

Thanks for all of your positive thoughts. Keep them coming!

Surgery a Success!

2008-03-28T16:27:00.000-07:00

(Posted by family, not Marissa)

Marissa had a good day today that ended with great news ... The visible cancer was limited to the two masses that showed up on the CT scan. It had not spread to any other organs and the so-called "frosting" (a layer of cancer cells) that Dr.Yamada said is frequently present was NOT. The tumors has fingered out and were "sticky", as the doctor phrased it, so they were more difficult to remove than anticipated and that resulted in a few complications. They were involved with the ureters, one of which had to be resected and stents put in temporarily, and also had to be scraped off of the colon. They also removed her appendix which had a suspicious spot on it. Finally, they sent samples of her pelvic lymph nodes off for biopsy because they were "shoddy" but Dr. Yamada does not think that they looked cancerous. All of that took extra time. She spent a very long time in surgery, over nine hours or more.

We arrived at the hospital about 6:00 AM and they took her to the operating room at about 7:30. At 4:00 PM we were told that they were starting to close her up and she was still in the OR until perhaps 4:45 or so. They do a nice thing here ... they call the waiting room and give updates every few hours so we knew by 10:30 that the visible cancer had not spread outside the pelvic area. We met with the surgeon at about 5:15 and got the details. I think it was about 7:00 PM when we got to see her in the recovery room and give her the good news. She was alert when we arrived and very concerned about the outcome. She has a few tubes running in and out of her that keep the digestive system from working and to protect the ureters until they heal somewhat. She will now spend 5-7 days in the hospital and 4-6 weeks recovering. In the interim, after lab results are returned the next steps will be determined. It could be radiation, chemo or possibly both.

She faced this ordeal with great courage and a positive attitude. Thanks for all the kind words, positive thoughts and prayers..... I think it helped.

To You (you know who you are...)

2008-03-23T15:08:00.000-07:00

All or nothing and…no in-between. I just can’t seem to get it
I’ve spent my entire life finding the balance
Thinking balance was the answer...until cancer

Pure light or darkness seem to be my choice
Not a hard choice you would think, but for me the hardest one of all
Darkness is not an option - not today or tomorrow or the next day…
And so I choose light, pure light

As I get closer to the climb ahead
And find myself delving deeper into darkness
And then deeper into lightness
When I think I can’t take it anymore

Something or someone reminds me that I am the light
That someone is you

I hear your prayers and thoughts
I am strong because you’ve showed me that I am
We will carry each other over the finish line, together…
And live our lives better, having known one another

Always,
Marissa
xoxoxoxo

It's Back

2008-03-11T12:36:00.000-07:00

Dear Friends,

It is finally time for me resurrect the blog and to let all of you know that I am headed for treatment with a recurrence of the ovarian cancer. On March 27th I will go into surgery with Dr. Yamada and from there we will decide what further treatment is required. Ideally it would be radiation and possible chemotherapy.

We have known since September, with an ever increasing CA-125, that this was a possibility and now it is reality. I have two small masses in the pelvis (1.5cm/2.8cm) and so far, nothing else has shown up on a CT scan or MRI. I want you to know that I am in no pain or discomfort.

Do not fret as there are some positive aspects going for me. Namely that surgery is an option as in most cases of recurrent cancer, chemotherapy is required becuse there are too many tumors in sensitive places in the abdomen to remove. All of the other past strengths apply which include remission for more than a year; my age; my health; my fantastic personality.. (not quite a medical evaluation but yet true!) and all of you, my support system, who helped me through it the first time.

What all of you can do for me is to keep me in your thoughts and feel free to contact me at any time. Treatment is ultimately a boring time and I love to hear how things are going in your lives. If you can do that for me, I promise to kick this thing to the curb, once and for all!

All my love,
Marissa

Another Milestone

2007-06-19T15:33:00.000-07:00

I love the month of June, I always have. From the time I can remember as a little girl June was by far the best month of the year. It is the month where we can finally breathe a sigh of relief that winter is gone (we generally skip from winter to summer in Chicago) and we can put our sweaters away until autumn. It is also the month where school ends and we have summer vacation to look forward to (ok, not so much anymore). In June there is the summer solstice making June days the longest of the year. And then there is June 8th which is my birthday and in particular for this year, it was my 40th birthday.

Once Sean and I decided that $60k to fix up the condo was not going to happen, the party was on! I hopped on Evite.com and sent out the invitations, called the caterer, bought the decorations and decided this was the year for my Hawaiian Luau 40th Birthday /Wedding Reception I Never Had Party!! (The wedding reception comment came from Sean). I wanted to celebrate and I needed to celebrate… goodbye and good riddance to 39 and bring on the 40’s! They say 40 is the new 30 but I don’t need to rationalize it. I’m 40 and good for me!

Bill said to me that he thinks life keeps getting better and better and I have to agree that I keep get better and better. No doubt I have my struggles and sometimes I get ahead of myself by over thinking life and what may be ahead for me. For all of the people that have been diagnosed with cancer after me, I feel an incredible amount of empathy as they struggle to accept the new conditions of their life. With each person I can remember almost a year ago when I woke up from the operation with this battle ahead of me. I remember the outpouring of love and compassion and I remember that I chose to beat this and come out ahead. I feel good that people are reaching out to me and that I can support them from a place of experience and with sincerity. Love is a powerful healer, giving and receiving.

Thank you to all of you that joined me in celebrating my 40 years on this earth – let’s hope for another 40- why not?

Oh yes, an update on my health – CA-125 is at 9 which is up by 3 points from 6 but well within the range of what is expected. My mammogram came out clean as well as the ultrasound and in general, I am getting stronger and stronger every day. I am committed to staying healthy and could not do it without the love and support of my beautiful husband, family and friends.. special thanks to Bonnie, Shelly, Mom, Bill and Melissa for making the trip. Special special thanks to Margaret.. may we both get more opportunities to be together on our birthdays. You went out of your way to show me how special you think I am and I love you for this… xoxo

Marissa

Wake Up Call

2007-06-14T12:44:00.000-07:00

Today I tripped over a hose and fell flat on my face in my suit on my way to work. I lay there (on my face) with my bags and the contents sprawled all over the sidewalk and cried. There is no doubt I was in shock from the fall as I initially wasn’t sure what damage I had done to myself (and my suit) but I also was feeling sorry for myself as life in general has felt so burdensome and scary - apparently I needed an excuse to cry.

As the nice gentleman, who was in charge of the hose, picked up my things for me and asked me if I was ok, I could not be angry at anyone but myself. I was too busy feeling sorry for myself, shuffling my feet across the sidewalk to notice the hose. I was too preoccupied with trying to reconcile life and death, cancer and being healthy, what was wrong vs. what was right to avoid being face first in a puddle of dirt and cut grass. On top of everything I was also locked out of my house as Sean and my Mom had the only set of keys we had. I called my “mommy” to come home and save me and then I sat on the curb and stared into space.

About 10 minutes later I looked down at my suit – I brushed off the dirt and grass and noticed the water was beginning to dry. My hands were a little bloody but I had no tears in my suit and just small scrapes on my knees. I stood up and really couldn’t see any trace of the fall except for the soreness I felt inside. Within a matter of minutes I went from feeling very unlucky to feeling very lucky that I didn’t hurt myself more than I did. Within a matter of minutes I “got it” that I need to focus on putting one foot in front of the other, one day at a time and that if I get ahead of myself, I will find myself depressed and/or face first in a puddle of dirt.

I called my mom and told her I was ok, picked up my things and went to work.

Love,
Marissa

Good News

2007-04-06T13:39:00.000-07:00

I have attempted to write in the blog a few times in the last week or so. Each time I decided that it was unfair to everyone to express the incredible anxiety that I was feeling as I approached my first CA-125 test this past Wednesday. The anxiety was staggering and it felt as though I was facing my mortality all over again as I did when I was first diagnosed.

Sean came with me to the hospital because I simply could not go alone. As much as I wanted to be the Warrior, I felt like my knees could buckle underneath me at any time. I could feel my heart race and my breath shorten… I think they call that a panic attack! We went to the infusion area where I received my chemo and I it was the first time I had seen everyone since January. They all were so welcoming and complimenting me on my hair and how healthy I looked. It reminded me of how I felt in treatment which was supported and loved by these people. They were comforting me as they learned that I was there for my first test, took my blood and wished me luck.

Sean and I went to the cafeteria and had a very expensive and not so tasty lunch and then stared at each other and the clock for the next two hours. Bill called anxious for the news but the appointment was at 3:15 – he had to wait with the rest of us. At 3pm we walked upstairs and waited for about 10 minutes. My name was called and I weighed in and had my blood pressure taken and we were escorted to a sub-waiting area… for 45 minutes. We watched Inside Edition and Jeopardy and then I thought I was going to scream.

Little did I know that Dr. Yamada’s assistant Eileen had the results of my test. She saw how miserable I was in the waiting room and found Connie to let her know that someone had to tell me my results. Connie walked in (looking great with her new hair do) and she smiled and asked how I was. I told her I thought I was going to vomit if someone didn’t tell me my results. She said “what, because you got a 6!?” I said “really, a 6?” and then she said “Girl, we have sick people to take care of”… I buried my head in Sean’s chest and cried with relief.

There is a great article in Newsweek this week that talks about surviving with cancer. I highly recommend you take a look on-line. It describes the feelings so accurately… I have another three months to work out how to cope better with the next test. But for now, I am free for three months and I am going to enjoy every moment.

Love,
Marissa

Recovery

2007-02-27T16:03:00.000-08:00

Wow, it is almost March already. I say this also thinking that I am ready for Spring. I am enjoying my work as always and find refuge there, especially when the fear sets in. If you can believe it I still sometimes wake up in complete amazement that I was diagnosed with ovarian cancer and the threat it places on my life.

I know I am doing well overall. My hair is growing and I am eating as though I haven’t eaten in five months… oh, wait.. I haven’t eaten in five months! ;) My joints are aching less and the neuropathy continues to be a frustration but I am living my life again and it feels wonderful.

My parents came in town this past Thursday in order for us to have our final meeting with Dr. Yamada regarding maintenance or consolidation therapy. I am relieved to say that we decided to not go forward with any more chemotherapy. Between the neuropathy and the fact that additional chemotherapy would not necessarily increase my odds of long-term survival, it made sense to not go forward. As usual I felt down after my meeting with the doctor. It has nothing to do with Dr. Yamada. In fact, she is so warm and loving towards me and I can see how much she wishes she could give me better news about my odds of surviving. I think without my family there with me I would have felt even more desperate to hear that I must wait and see. This is a time when “time” becomes your best friend or your worst enemy… and I get to decide on a day to day basis which one it is. Dealing with the possibility of an untimely death is really a bitch. Can I just say that? I really would prefer not to.

As we were standing waiting for the elevator after our meeting with Dr. Yamada, this amazing pregnant woman came up to me and took my hand and looked me straight in the eye. She said that she had been watching me earlier in the waiting room and couldn’t believe how beautiful I was. She was telling her mom about how she felt and when she saw me for the second time on my way out she had to come and tell me that I was the most beautiful woman she had ever seen and how courageous I was and how she wished the very best for me. She was gushing and there I was with my parents and Sean, the elevator came and went and we both had tears rolling down our faces. It did not seem to be a point about physical beauty – she saw something in me, almost as though she could see inside of me… it was a remarkable moment. I can’t honestly say I understand why it happened but it was powerful and I will not forget it.

I am getting ready to have a few weeks of travel. Mom and I are going to London and Paris for work and a little play. Sean and I will also spend a few days in Florida later in the month so it will be busy. We are starting our kitchen project (finally) and I plan on starting yoga again when I get back from Europe. Before we know it, Spring will arrive and I will be ready to take advantage of it. I will do my best to stay focused on the following facts: I had optimal surgery when I was diagnosed; my CA-125 dropped to an optimal level (7) and dropped at optimal speed (under 35 within 8 weeks); I am young (relatively speaking); and I have a strong spirit with an amazing support system… and if need be, I have the capacity to fight whatever comes my way. It is in Gods hands now.

Love,
Marissa

Back to Life

2007-02-03T12:58:00.000-08:00

I was reminded last week by a Board member that I hadn’t updated my blog since January 10th and he was a little worried about me. I happily replied that I was back to work and it felt great to be there.

What an amazing few weeks I have had in terms of healing and getting back out in the world again. It has been a roller coaster of sorts but by far more highs than lows and of course, a few in-betweens.

Two weeks ago I had my first exam since the chemo ended and my CA-125 has a baseline of seven which is two less than the last reading of 9. We were all thrilled. Statistically speaking this is a positive sign to be under 10. I also need to consider if I will do some type of consolidation or maintenance therapy which involves more Taxol related chemo. It would be smaller doses over 12 months. We decided as a family to do more research on the effectiveness of this approach and have a meeting with the doctor this month to decide a way forward. I do have faith that we will make the right decision for my health and quality of life but there is no easy answer here. I will be sure to let you know my approach when we decide.

It is the middle of winter for most people but for me it feels more like Spring. I feel alive and I have the little hair sprouts to prove it! Everything is starting to come back such as my appetite (and therefore weight) and my desire to be social and see everyone and do everything… Sean and I are adjusting to being away from each other rather well I think. We both like to focus on our work and now it is so much easier and we enjoy our free time together.

I do have some challenging areas as I feel aches and pains in my joints and muscles and I do have some neuropathy (the numbing of hands and feet) which I am finding more difficult than I expected. I realize it took me about 6 months to get here and so it is going to take me some time to get out.

I had my abdominal port (I named her “Flo”) taken out Thursday. It was an outpatient procedure and so much easier than when they went in. I could not believe it. I was out by 3pm, napped until 5pm and was making dinner with Sean by 7pm. I felt good yesterday and was able to work all day from home. I am looking forward to the incision healing so I can get back to yoga.

I am slowly but surely catching up with everyone. I am thinking of all of you who have been praying for me and thinking of me and hope that I can talk to you very soon. I am so happy to be feeling well and living my life.

With Love,
Marissa
xoxo

Happy New Year!

2007-01-10T08:27:00.000-08:00

Happy New Year to everyone!! It feels like ages since my last treatment – almost like it was a dream. When I see my bald head, no eyebrows, ports and scars on my body I am reminded that it really did happen. I am recovering although sometimes I feel that it is too slow. I am not sure how long it will take to feel the energy that I had prior but I am told it could take up to six months. My symptoms are similar just not as harsh. I sometimes feel like I have the flu or that I am hungover after a fun night of indulging… but there has been no fun night! In general I am fatigued.

I have had a wonderful four weeks first having a little Christmas celebration at my house on December 16th with some friends. I was having a great day and Sean and I decorated the house and we ordered Vietnamese food. I remember feeling so relieved even though I really didn’t feel any better physically. In fact, I was probably the most toxic considering the cumulative effect of the chemo.

I spent the following week resting and receiving fluids and magnesium and potassium in order to prepare me for leaving town. Even though every day the nurse came to administer the fluids, my potassium, magnesium and red blood count continued to drop and I could really feel it in my body. Muscle aches, headaches and fatigue were the symptoms. On Wednesday I went to the hospital for blood and fluids. My dear friend Myriam from Austin Texas came to visit me for a few of those days and we just hung out and talked like we usually do on the phone. We have known each other since college and I loved having her there. She is not sure if she likes me better without hair or with hair! I love her for that!

On the 22nd we went to Marshall Michigan to see Sean’s family. He has really sacrificed spending time with his family in order to take care of me. I know he would say that it wasn’t a sacrifice, but I know it has been. The entire family came to exchange gifts and enjoy a dinner together and it was great to spend time with everyone. It was my first trip out of Chicago since the chemo started and it felt great to be mobile again. We came home on the 23rd and left for Florida Christmas Eve. I was worried about my energy level but everything worked out fine. My legs felt shaky walking around the airport and I remember feeling strange to be out in public because it had been so long. I was expecting my ports to set off the security alarms but I walked right through with no problem. I hope it continues since I will travel more with my job.

I have been in Florida for the past 18 days. I leave today for Chicago. It has been a wonderful trip in so many ways. As a cancer survivor I have become part of a “club” of amazingly strong people with a will to live and push on. I thank all of you, especially Peg and Jack, for sharing your stories and encouraging me to be strong and push on… and for answering all of my probing questions. It really is so helpful to know you are out there and that you have traveled this path before me. I also want to thank my fans.. (lol – I am laughing at myself as I write this). Thanks for letting me know that you enjoyed the blog and my writing and that maybe I should consider writing a book. This blog has helped me as well and I am not sure what the future holds but I can tell you that I am open to whatever happens.

A new phase has begun for me and I must continue to live one day at a time as I climb out of my chemo fog and step back into my life. I intend on focusing on what I can control such as aspects of my health through diet and exercise and creating a balance in my life that will allow for optimal healing. I want to continue to spend as much time with family and friends as possible and of course, give back in some way where I can support people the way I have been supported.

I know - Man plans and God laughs… I will plan and then see what God has in store for me… Today I feel blessed and that I have another chance at living my life. I am keenly aware of this and intend on making the best of it.

Love,
Marissa

The First Day of the Rest of My Life!

2006-12-19T20:30:00.000-08:00

This link is a slide show of my last treatment. Thanks Michael for putting this together!

http://www.prizantphoto.com/slideshows/firstday/

I am finished!

2006-12-15T13:10:00.000-08:00

Happy Days! I am finished, complete, done, no mas! I had my beautiful, supportive family with me in the hospital. We had balloons, Christmas cookies, chemo… what more could we have asked for. Connie was there with a big smile on her face knowing that this was my big day. All I can say is that I felt loved as I have been feeling this entire experience.

My dear friend Pat who has now completed her fourth round is still fighting the good fight and she was there yesterday feeling awful which of course I can relate to. I feel so close to her and will be cheering her on for her last two rounds as best as I can. She is a strong lady and I know she can make the full six rounds.

As for all of you out there that have been reading my blog, I thank you for your interest your kindness, your thoughts, your prayers, your wisdom… for taking your precious time to send energy my way and lift my spirits high enough to get through this difficult time.

Today is a day of Hope. Today is the first day of the rest of my life. I wish you all peace, love and happiness and a wonderful holiday season.

Love,
Marissa

November 28th

2006-11-28T10:19:00.000-08:00

Last Wednesday I had my first real glimpse of what life is going to be like after I have completed my chemo treatment on December 14th. I was on my day eight treatment (which was really day seven because of Thanksgiving) and had a tough morning physically but emotionally I felt very light and hopeful. Completing round five with a CA-125 of 12 was feeling really good… and is still feeling really good.

Since round five started 12 days ago I feel another shift and just like in Spring, when you wake up and feel a big difference in the direction of the Sun, I see the light at the end of the tunnel. I breathe a huge sigh of relief just writing this. I am smiling and I am ready.

I loved Thanksgiving week. On Monday my fabulous friend Phil came over with his girlfriend Denise to our house for dinner and it was very special for me. Phil lives in San Carlos and he made a special trip on his way home to Boston for Thanksgiving to see me and Sean… for dinner. What I liked about the evening is that we don’t see each other very often and having both Denise and Phil there seemed like the most natural thing, as if he lived down the street. I love that feeling.

Then Bill came up on Tuesday for the week and I like it when all four of us are here together. It is like “Team Marissa” and they take such wonderful care of me and we enjoy each others company. I like the feeling of my parents being so comfortable in my home, just like I am so comfortable at theirs.

Wednesday was out-patient day and the three of us hung out all day and watched the medicine go in, watched me throw-up and then watched me feel perfectly ok by the end of it. It was a strange day that I felt good physically. The chemo eventually caught up with me on early Friday morning (very early) and into Saturday morning.

Saturday my parents went home and I wasn’t feeling great so it was a lazy day for us. Sunday Adrienne came over and I was feeling really good. We walked over to the local pizza place and I ate tons of food. Oh it feels so good to eat when I can. We were treated especially well at the restaurant. Just another example of how compassionate people are in the world.

I have another eight days before round six. I find myself crying a lot these days. They are not tears of sadness but of relief and gratitude. It is just pouring out of me and almost always happens when I think about how amazing my support system has been. I have successfully accomplished my goals with this treatment. I have been strong and more importantly, I have learned what it means to be vulnerable and let people take care of me in a way that I never expected would happen. Thank you, thank you, thank you…

With Love,
Marissa

2006-11-11T11:45:00.000-08:00

Less than five weeks to go. My CA-125 is at 15 and this was before round four. Next week I go in for round five. I am starting to see the light… two more rounds is still significant but it is the last two, not the first or middle. Round four has had its highs and lows and I expect round five to take on its own personality. I feel confident that I will finish all of six which was always the goal. I am realistically starting to plan for January and will be going back to work January 15th. The doctors will take out the abdominal port 6-8 weeks after my last treatment which is on December 14th. I can only hope that it doesn’t hurt as much coming out as it went in… geeze that was painful! The port in my chest will stay in for a year as recurrence is possible. I guess that port will be one of many reminders that this is a possibility.

I think Sean and I are just starting to realize the significance of all of this. The possibility that we may not grow old together is painful but necessary to understand and process. There is a safety in this stage of chemotherapy treatments. I have the chemicals to fight off the cancer and after December it will be my body that will need to kick it into gear. My body right now is probably at its weakest point ever and so I have a lot of strengthening and nourishing to do this winter. I have no idea how long it will take to start feeling normal but I will just have to continue taking it one day at a time as I have learned to do these past few months.

For now and today I am feeling pretty good. I have a low level of nausea all of the time but I have become used to it. I am a little anemic and I feeling low energy but the rest of my tests were good this week and so my body is really holding up well. We have some friends in this weekend from Michigan. We went out to dinner last night to Magnolia for dinner which is right down the street from where we live. For the first time I didn’t wear something on my head. I wore a hat of course on my way over but I took it off and was as bald as bald can be. It felt good and liberating. I really do not like anything on my head as it makes me hot. I still had one of the tattoos left on my head that Olivia and Talia put on my head on Wednesday. They are five and seven years old and they bought me these tattoos awhile back and now I finally have a smooth head – they wash off of course. There is truly nothing like humor to lighten things up! And children.. they take everything in stride. It is so much fun to be around them.

Five weeks, five days and four hours to go…. Hugs and kisses to all.

Love,
Marissa

Pictures

2006-11-05T14:40:00.000-08:00

Chemo Girl and Xena together... fighting cancer cells everywhere!

Time for Sean to shave my head...

In between round 3 & 4, Sean and I cooking together....

Round three outpatient visit with Bill and Peter.

Round two outpatient -
My Angel, My Guide... Connie my chemo nurse... and Peter.

My mom's favorite picture on the back porch between rounds one & two.

Round Four

2006-10-25T07:37:00.000-07:00

I had a great day yesterday – so great that I did not want it to end. I spent a full day back at work and it was a day full of hugs (6 of them to be exact) and encouragement and internal auditing. I loved it.

In fact, I really had a great weekend. I physically started to feel like myself and I was able to spend some time with my best friend from childhood Christie. Her mom and dad still live in Northfield and she was in town for the weekend. I used to live next door to Christie for nine years starting at the age of four and so we go way back. It always feels like home to be with old friends. Sean and I were able to take a long walk each day and my body was sore but it felt good to be outside and move.

Today I go back in the hospital more energized than I expected. The dread is here but I will be very happy to have four rounds behind me and less than seven weeks to go. Not that I am counting of course. I am looking forward to seeing Pat and hope that is she is doing well after her first treatment.

It will be a few days before I write again but I will be reporting on a lower CA-125 test. I am at 22 now and eventually want to get to single digits.

You are all in my heart - I can really feel all of you out there sending me your energy for healing and strength. It is because of you that I am able to dig and find more strength to get me and my body through this next round...one step at a time.

Love,
Marissa

Three more to go

2006-10-18T07:48:00.000-07:00

I feel like I am in the thick of it right now. In the dark journey of the soul one never really knows where bottom is and that is how I feel right now. Round three has been more aggressive on my body and I feel unwell. Right now I am low in magnesium which is causing some side effects. I am trying very hard to separate my body from my mind and spirit and I can do it some days better than others. My focus is often on my ability to provide myself adequate nutrition because I feel so lousy and skinny girls don't do as well on chemo (no way is that going to be me!). I have been able to do some work the last few weeks where I feel like I am contributing a little. This helps my spirits out tremendously.

With all of this time on my hands I think about what it will be like after my last treatment. Sean and I are going to spend some time in Florida with my parents over the holiday and that sounds like Heaven to me righ now. I also think about my first day back at work and wonder how the potential of recurrence will impact me. I believe finding this balance will be very important for me.

I think about all of you reading this blog and hope that the reality of my situation does not bring you down in any way. This is an experience of life that happens to be mine. One experience in millions of experiences people have every day. Maybe each of us can learn something from this. Life can be so random.

With Love,
Marissa

Round Three

2006-10-10T13:43:00.000-07:00

Hello to everyone. I am finally coming up for air after the first part of round three. I caught a cold last Wednesday when I went into the hospital and that did not help very much as you can imagine. I am now anemic (low red blood cell count) and have a slightly elevated white blood cell count and so my body is really starting to feel the effects of the therapy. I slept a lot over the weekend and yesterday Mom and I spent the day at U of C while I had a blood transfusion. I can honestly say I have more color in my face and so I look better but I really don’t feel more energy as a result. Thursday I go back in to finish up round three and then I can say I am halfway complete!

My CA-125 continues to go down. I am now at 22 from 33 after round two and so it will be another two weeks before I see the results of this round. Everyone is incredibly encouraging at the hospital and seem pleased to see that I have maintained my weight and continue to do “well” considering.

In the hospital the admitting doctor mentioned to me that another patient was starting her first round of chemotherapy for ovarian cancer and that she was right down the hallway. The doctor said she was very nervous and that I was as “cool as a cucumber”. I sensed she wanted me to talk to her and so I offered if she thought it would help. Early Thursday morning I wandered down the hallway and met Pat, a 68 year old grandmother from Kankakee. Pat and I spent a lot of time together that day and a half and I am very glad that we have found each other. She is a kind and patient woman and someone who is going to find the strength to make it through this process. We will now be on the same schedule and so I will get to see her for the rest of my treatment. Meeting Pat just confirms to me that I want to be involved in helping others with ovarian cancer.

Bill is coming to Chicago on Wednesday for the weekend so it will be nice to have my parents here. If I am feeling ok we may take a little fieldtrip somewhere .. Ohhh! Life is so exciting these days!

I am starting to see some light at the end of the tunnel - two months to go...

Love,
Marissa

Relationship with Cancer

2006-09-30T11:36:00.000-07:00

I am realizing some things about my relationship with Cancer. First of all that it is a relationship. I have this “thing” that is random, dangerous and demands my full attention. Cancer has put my Life on hold or I have put my Life on hold for Cancer.

I am sure my day yesterday has triggered my realization. I stepped out in public and went beyond my comfort zone since being diagnosed. It was really a perfect setting for me because I was with my friend Julia and her family. I have known Julia and the Harris/Simon family since I was five years old. Our family’s were close when we were young and our mothers had a special bond and energy that made my relationship with Julia that much stronger. Yesterday I went to the funeral of Judge Seymour Simon who died at the amazing age of 91. He was a man who loved his family and achieved many public service accomplishments. Seymour is Julia’s grandfather.

The service was moving and there were over 700 people there, including the Mayor of Chicago. As I waited in line to greet the family I realized that I did feel different with the cancer. There is the obvious turban on my head and then there is the fact that I really don’t feel that great. When I greeted Julia’s family I forgot about myself and started to feel the emotions around losing a loved one and celebrating their life. As I said, the service was incredible moving and I am still feeling it today. I realize that Life is at the forefront my thoughts every day. What about Life? Everything – you name it I have thought about it. What about my Life do I like, not like, love, want, etc? I look at others lives in a color that is brighter than before (and it was pretty bright before all of this started).

After asking myself these questions for a few months now I have to say that the answers don’t seem to be different. There is not anything in Life that I really want now that I didn’t want before it all started. I love my husband and family, Chicago, friends, my job… Life truly has never been better and so for right now, I think I would like to stop putting my Life on hold for Cancer and push Cancer a little harder to get more of My Life back.

Introducing Peter the Tiger

2006-09-23T10:01:00.000-07:00

Round two inpatient visit. Me and Peter the Tiger (my chemo buddy). Thanks to Peter Roberts for Peter... he is a hit at the hospital!

My wonderful friend Adrienne came to visit me and Peter...

We never can resist taking a self-portrait...

Cancer Free

2006-09-22T07:14:00.000-07:00

Yesterday was my roughest day. In the early morning I began feeling stomach cramps from the steroids I have to take prior to my Day 8 treatment. By 6am I had spent the night in the bathroom vomiting, etc. I began to get dressed to go to the hospital for treatment and I could hardly lift my head I felt so weak. My Mom called Connie the chemo nurse and she advised on some medication and fluids. I went to sleep another two hours and rallied to get to the hospital. I just didn’t want to be behind schedule.

While in the hospital yesterday I was telling Connie how I really wished I didn’t have to wait for another 10 days for my CA-125 test results. She looked at me and said the lab ran them by accident. I am at 33 now which is under the 35 mark. Officially I am cancer free! Dr. Yamada wants the number under 10 and this really seems achievable. I am excited.

I find the outpatient experience on Day 8 to be very easy in comparison to the two day inpatient visit. I spend most of the time with Victoria, a great nurse who works in the infusion area and Connie. Connie feels like a great friend. She is encouraging, comforting, smart and caring. She makes this experience more than tolerable and the fact that I trust her fully is so important to me. She is truly a gift. In Lance Armstrong’s book about his cancer experience he mentions his chemo nurse as his angel. I can totally relate.

Thanks again to everyone for your blog comments and your continued love and support. I am a third of the way through with positive results. I am feeling a little more patient now!

Love,
Marissa

Patience is a virtue (or so I'm told)

2006-09-18T08:54:00.000-07:00

Patience has never been a virtue of mine. Ask anyone who knows me and they will tell you that I cannot wait to give gifts (I must buy them last minute) and that I have a tendency to want to do things sooner than later. I am feeling very impatient during round two of treatment. This laying around stuff is getting old yet I don’t have the energy right now to do much else. I feel like I am missing out on my life and it is difficult for me to know that events come and go and I am not a part of them. I think perhaps this is a good sign that I feel well enough to be impatient.

Round two so far is different than the first. I felt worse on Saturday than I remembered during the first round but yesterday and today I feel better in general. I am still very nauseated and tired but the medication is working in terms of preventing me from actually vomiting. Everything tastes salty – even sugar which is not all that appetizing

When I checked into the hospital last Wednesday the nurses were very encouraging. They seemed surprised to see that I had not lost weight and that my spirits were so high. A few of them mentioned to me that often after the first round of ovarian cancer treatment the patients are not doing as well. This news along with my CA-125 test results placed me in the right frame of mind for this round of treatment. “Bring it on!” Ahh.. but today I can’t help but think about having to do this another four times.

My hair is still holding on for those of you who may be wondering. Sean’s hair is growing strong (at least in the areas where he has hair!) and my head is starting to look a little like Swiss cheese. It is almost as if a little mouse is taking nibbles at it during the night and there are patches where there is no hair. I am actually looking forward to it all going because it feels like a combination of sand paper and Velcro right now so I prefer a smooth head. I also have Talia and Olivia (7 years and 5 years old) who are waiting patiently to put tattoos on my head which will work much better without stubble! We will be sure to put up pictures of that event!

I am starting to think about my Halloween costume so if you have any ideas, please let me know. So far we have cone heads, Hari Krishnas and Dr. Evil (thanks for the idea Rebecca). Take care and I will write more later.

Love,
Marissa

Round Two!

2006-09-15T15:35:00.000-07:00

I am back from my inpatient treatment for round two. Great news about my CA-125 test (blood screen that tests for levels of cancer in my body). It dropped another 110 points down to 63 (original number was 281). The goal will be less than 35 which we are hoping to see at the next test (Oct 4). This means that I could be cancer free for the rest of the treatment. The treatment will still continue for the entire six rounds but it is very good news that it is dropping so fast.

I am feeling very full in the abdomen right now with all of the fluid and I am starting to feel the flu-like symptoms again and so I am not going to write much today. Just to say that I feel more and more hope with the positive results. I do have moments of fear and sadness and always think of all of you out there sending me energy to have the courage and strength to get through it. Thank you.

Love,

Marissa

Today is the day...

2006-09-09T12:08:00.000-07:00

...for shaving our heads.

No turning back...

2006-09-09T12:07:00.000-07:00

Get it off me!

2006-09-09T12:06:00.000-07:00

Before it falls out!

Husband and Wife

2006-09-09T12:04:00.000-07:00

Have you heard of the saying that couples start to look alike?

Thank you Norayne!

2006-09-09T12:02:00.000-07:00

We had a great time at the salon! Sean will see you next week. ;-)

The Interim

2006-09-07T08:02:00.000-07:00

I like this time in between treatments. I am feeling better and very peaceful as I am running at a steady slow pace. Mornings are the best for me and since I go to sleep around 10pm every night, I wake up in the morning most of time feeling refreshed and without discomfort. Often it is in the afternoon when I start to feel pain and fatigue. I am trying to have a little bit of normalcy in my day such as going to the grocery store yesterday by myself. It felt fantastic. I am completely used to having a crew cut and only realize it when a small child stares and points at my head. I think the complete bald look will be fine for me even though I am covered for wigs and scarves. I imagine my head will get cold so they will be helpful.

This past weekend I was feeling great. Sean and I had Hien and Adrienne (friends and colleagues) over Saturday night and my Mom prepped a fabulous dinner for us to serve. My appetite was showing signs of improving. On Sunday we actually went out to dinner with our friends Julia and Sonny like normal people. We walked into Andersonville and I ate a crazy amount of food. Sean and I couldn’t stop talking about how great it felt to be out again. On Monday I started to feel aches and pains in my joints, especially my neck and shoulder blades as well as a wicked headache. I took my temperature and it was 100.8. Anything over 100.5 I have to call the doctor because the concern is a low white blood cell count in combination with a fever. The fever has not been as high since but it does like to spike up and down and I feel the aches when it is up. On Tuesday I had my blood drawn and my white blood cell count has actually spiked up, probably due to that fabulously expensive ($3k) Neulasta shot which is designed to increase white blood cell count production. This is what is also creating the aches and pains in my joints because it goes to the bone marrow to do its work. So you can see how crazy this chemo process is. I am constantly taking medication to offset the toxicity of the chemo which then creates new side effects. It really is a roller coaster ride.

Yesterday I started my Chinese medicine routine. A few weeks ago I went to Dr. Goa in China town who my friend (and acupuncturist Mari) recommended I go to. What I like about Chinese medicine is that it is designed to treat the source. When Dr. Goa started explaining this to me (which I already knew) I couldn’t help but want to share with him that this is also the approach of Internal Audit. We look at processes and activities in a holistic way and do our best to treat the root cause of an issue vs. the symptoms. But I held back… which we know is difficult for Marissa to do! ;) I feel very good about complimenting the chemotherapy with these herbs. There is obviously a weakness in me that has allowed this cancer to develop in the first place and I accept that chemotherapy has to be in place to treat the cancer (symptom) but I must also feel like I am treating the root cause. I promised Dr. Yamada (Gyn Oncologist) that I would not take the medicine until the nadir period which is 10 days. She rather I not do anything of course because it is not scientifically proven, but I know in my heart that this will not compromise the chemotherapy and gives me a better chance at survival. I have to be the Captain here and do what I think is best.

I have another week of peace and then back to the hospital. I know that during round 2 I will lose my hair completely and will most likely feel an increase in the side effects but I am ready to get round 2 behind me so bring it on! I just wish Xena could come with me!

Love,
Marissa

Kicking Ass with Xena

2006-09-06T16:11:00.000-07:00

Who sent this to me?? I love her!

My Mom

2006-09-02T15:48:00.000-07:00

Having this unique opportunity to write about my life has made me naturally reflective. Having a life threatening illness has also put me in this frame of mind. There are so many amazing experiences and memories that fill me with joy and today I have to write about one of the more joyous experiences in my life which is having a mother like my Mom. For those that do not know her she has the youthful name of Michelle and she is as beautiful a Spirit as there is on this Earth.

The day I found out that I would need surgery my mom wanted to come to Chicago. She has lived in Ft. Lauderdale Florida since I was 18 and the distance is more and more a source of sadness for us as we both get older. I was trying to be the strong one and said “no, no don’t come… I will be ok”. She finally said “please, let me be there for you” and I broke down and cried and whimpered “ok”. She was in Chicago that night and has been with me ever since.

Now many of you would say to yourselves that you couldn’t stand having your mother there with you no matter how sick you were and that is why this relationship is so special. She went home today (until the next round starts) since I am feeling better and I have been weepy ever since. I love having her here with me and not just because she takes care of us, but because she is my best friend. I know that I can handle the next few weeks on my own but I will miss our morning breakfast together and just hanging out in general.

So Mom, this is not to make you feel bad that you went home for a few days, but to make sure you know how much I love you. What will we do when I have kicked this cancer thing and we are still 1200 miles apart? xoxo

Two down, 10 to go!

2006-09-01T07:31:00.000-07:00

I had my first outpatient treatment yesterday and so far so good. This treatment is where they put Taxol in the abdomen or in the IP port (better known as Flo). What is uncomfortable about this treatment is that the fluid fills the abdomen and my muscles begin to cramp. The kind of cramping you sometimes feel in your feet when one of your toes flies off in the wrong direction. Of course there are things they can do for me such as giving me pain killers or sedatives which calms the cramping.

The entire process took about six hours. Mom and I arrived at 8am at the advice of Connie. Apparently there are no reservations and so it is first come first serve. Not to mention the holiday coming up (do more people want to come before the holiday?). When she told me this I had this image of all of these bald people elbowing and pushing their way to get their treatments. I figured since I am relatively young that I had a pretty good shot at getting my space! In reality it is all very civilized. I had a reserved private room with a sliding door that could close with a curtain and a television. Some people just sit in a chair in the open. I am sure because of my type of protocol; I need a bed and therefore a room. It was very nice I am happy to say.

The time flew by and before I knew it I was leaving the hospital in a daze from the painkillers and unsure on my feet from having a full belly. I slept yesterday afternoon and ate a decent amount of food last night. This morning I woke up with a little nausea but not too bad. I am very hopeful that these next 12 days before my treatment I will have some energy to get out of the house and be more normal.

I will leave you on a very exciting note. There is a cancer marker test that I will be given every round called the CA1-25. Normal levels are 35 or below. Three weeks ago before treatment my level was at 281. Before yesterday’s treatment they administered the test and it came back at 176! Now there is something to be hopeful about!

Love to you all!

Marissa
xo

P.S. If you want to comment on the blog, it should be easy now. Sean turned a default key off that did not allow comments without registering. This should be ok now. Thanks.

"When I feel bad, it doesn't mean that I am sick"

2006-08-29T15:37:00.000-07:00

This is one of the affirmations that I have been saying to myself because it helps to remind me that this process (chemo) is a part of healing. I thought I would share this with you because I am going to be feeling bad and probably writing about it. Maybe you will think of this affirmation when you are concerned for me or feeling sad for me. So… I have been feeling bad here and there. I sometimes can’t tell what it is, the chemo, the anti-nausea pills (which do state a side effect of nausea if you can believe it).. Ultimately it is the chemo of course and so we are all learning here on Beacon Street how my body responds. In general, it is dehydration and diarrhea which is the problem to date (sorry if this is TMI – too much information) and so we are working on this aspect right now.

I have these fabulous nurses that come to the house to give me hydration. For those of you that haven’t heard, I had to be a drama queen on the first visit on Sunday. I was feeling a big nauseated and almost passed out in the kitchen. Bill was on one side, Mom on one side and Bonnie (the nurse) saying “Don’t go to the light Marissa..!!” Once I got horizontal on the bed I was ok and everything calmed down. Now everyone at Ultra Care (the outpatient nursing company) knows I am a problem patient!

Other than that, I don’t have much else to report. When I am not feeling well I can’t concentrate on work or reading. I like quiet, no television, etc. When I am feeling good I want to do everything. I did have a funny arrival today. Someone sent me a life size poster doll of Zena, Warrior Princess!! There is no card so someone has to claim her and I promise there will be many pictures of me and Xena on the trail! Too funny!

That is all today – I hope all of you are doing well and as my grandfather always said “stay happy”.

Love,
Marissa

Chemo round .5

2006-08-25T15:30:00.000-07:00

If I am counting two chemo visits for every round and six rounds of chemo, that means that I have 11 visits to go! Whoo hoo! My mom told me that this countdown approach isn’t going to work for her until we get past the half-way mark. For me, this approach works with the one step at a time philosophy and frankly there is no other way for me right now.

I arrived Wednesday night and checked in the hospital. My Mom and I, who tend to enjoy something more luxurious vs. less, decided that Rush University was similar to a Marriott and U of Chicago was more like a Holiday Inn Express. Bill did remind us that we were going for substance over form which is a good point, but still… how about form and substance?

I figured out why I have to go in Wednesday night instead of Thursday morning. They start to prep me Wednesday night with steroids which protect me from having an allergic reaction and to soothe the stomach, etc. (and I hope to have a full beard by the time all of this is done!) Then in the morning they start with the Taxol for 24 hours and basically I just sit there. On Friday morning after the Taxol, they give me saline/fluids in the chest and the abdomen for the Cisplatin because this chemo is hard on the kidneys. I feel filled with liquids and a little dopey right now but overall ok. The side effects will probably not take place for 2-3 days yet. I love Connie, the chemo nurse, and completely trust her. They are all working so hard at trying to keep the nausea away and protect my kidneys and so I feel like I have the right team helping me.

One funny part of the hospital was the chairs that they had in the rooms. Each one has its’ own whoopee cushion built in it so when you sit down, it sounds like you are passing some serious gas. Sean and I made a great video clip but we are not sure if it can go on the blog or not. If not, we may have to send it to all of you. We also took a few pictures with my friend Peter the Tiger who I received as a gift from Peter Roberts, President of the Americas region from my company. Peter will be joining me at all of my chemo appointments and you might find him in a few pictures along the way.

Other news..at the suggestion of a friend of mine, I have named my ports. They are both women (of course) and I cannot take credit for the names because Bill came up with both of them. Thanks Bill! The one in the chest, her name is Ivy (get it.. IV) and the one in the abdomen is Flo (short for Florence). If you think this is weird, just wait because I am sure it is going to get stranger as the weeks go on.

Overall, I am doing really well. I feel relieved that it has started and I understand the routine a little more. I have various anti-nausea pills that I take the next few days and actually have a nurse come to the house to give me more IV fluids on Sunday and Tuesday. Then next Thursday I go back in for a few hours for some Taxol IP treatment. Then… I will be complete with round one! Thanks to all of you who continue to call, email, send packages, flowers, prayers, thoughts, etc. I feel spoiled and am enjoying all of it immensely.

Love,
Marissa
xoxo

Faith or Fear?

2006-08-22T15:18:00.000-07:00

I have to say that I am afraid because it would be ridiculous to not admit this to myself and to all of you. There are days when the fear feels as strong as the first day I found out.. well actually I was on morphine at that time so I wasn’t feeling too much of anything! Coping with this fear is new to me as it is not like anything I have experienced in my life and so I am slowly but surely finding ways to deal with it. I have this saying that I use in my life - “Am I acting in Faith or in Fear?” This philosophy is what I have used in my life for years when things are not going the way I would like them to. Usually if I stop and take a step back from this type of situation, there is some kind of fear involved and I can turn it around by having faith that it will all work out ok. Faith in people, faith in myself and faith that it will work out the way it is supposed to.

So… this hasn’t been working as much lately. I am not a person who is going to say this is going to work out the way it is supposed to if the end result is not being a survivor. Good or bad, that is me and I just am not ready to go yet. So this is a new space for me and a new layer of me that I am just starting to understand. I have this Warrior Spirit which I am sure I was born with and I have relied on it for most of my life to get me through the difficult times. Somehow I feel that this is not enough and that there are other parts of me that must and will come into balance in order for me to fully heal. And when this all comes together I will take this balance into my life as a survivor and it will serve me and the community for a higher good.

On a different note, I wanted to say something about my employer, Jones Lang LaSalle. I have mentioned my friends and family as a support system and this would be expected in a situation like mine. What is not always expected is how your employer is going to respond. From the beginning of my ordeal there has been nothing but kindness, thoughts, prayers, concern, compassion and love. Yes, all of this from a corporation. The phone calls, flowers, cards, emails, visitors – this is truly a gift. I have been given the gift of not having to worry right now about work because I have an incredible team of people who are capable and willing to fill in for me and continue operations as normal. I have a boss who recognizes this great team and is supporting them in my absence. I have people around the world praying for me and yes.. all of this from a corporation. There just isn’t enough I can say except I really miss everyone and cannot wait to get back… and I will never forget what you have done for me.

Talk to you after chemo -

With Love,
Marissa

Preparing for Chemo

2006-08-18T08:54:00.000-07:00

Thanks everyone for your comments and support. I already feel more relaxed about how I will keep in touch with everybody. I spoke with my chemotherapy nurse yesterday for the first time. Her name is Connie and she seems very nice. I think about what it must be like to be a chemotherapy nurse. Every day they face cancer and cancer patients in the same way we face our jobs. This experience really has opened my eyes to how much compassion there is in the health care industry. I pictured much more bureaucracy and impatience but have found the very opposite. No wonder doctors and nurses always make it in the top ten list of jobs that are most respected and admired.

Connie and I talked about the schedule, the protocol, the anti-nausea drugs I need to get (one shot to boost my white blood cell count costs $5k-6k without insurance!). They say that these drugs really can help the nausea so let’s all hope that this applies to me. Since this has all happened I have this tendency to shut down as we start to talk about the details of treatment but this did not happen yesterday. I had my pen and paper out and was writing down everything that would happen and what I needed to do… just like a good project manager does. This is progress for me as the fear is different than it was before. It does not stop me in my tracks completely.. it shortens my breath for a few minutes and then I remember to breathe… and it gets better.

In the next few days I will go through my mental checklist to make sure I have everything in place to respond to the possible side effects and I will visualize the chemotherapy as medicine that is flowing through my veins and killing off the cancer cells while keeping every other part of my body healthy. I will focus on the love and support I am receiving from all of you. I will focus on my life after cancer and all of the beauty in the world that I want to experience. In between all of that, I will work, read books, watch comedy DVDs (I hear cancer hates laughter) and my Mom and I are going to renovate our kitchen! It has been suggested to me that I should have a project and I really want to do this. This will be a great project for my Mom and I and I will have a chance to use some creativity. And I hope to see many of you as well. xoxo

2006-08-16T21:03:00.000-07:00

Here is my Xena Warrior Princess look.

New Blogger

2006-08-16T19:14:00.000-07:00

Hello to everyone. This is my first experience in blogging (is this even a word?) and so we will see how it goes. It does feel a bit self-indulgent but I know that so many people want to know how I am doing on a regular basis and this approach may even be cathartic for me. It has been about a month now since surgery and so much has happened.. and not all of it bad. After having surgery at Rush University with Dr. Rotmensch I went to Northwestern University and University of Chicago to determine the best approach to chemotherapy. I am especially grateful to my wonderful friend Julia for getting my ass in gear to get out there and take control of my health and my future. It can be so easy to sit in a fog and wonder what the hell to do. Since the first day out of the hospital we have been very aggressive in our learning about my diagnosis and how to best treat it.

Last week I chose Dr. Yamada and the University of Chicago. This was the most difficult choice of my life and one that I am confident in and happy it is behind me. This team has the most experience with the chemotherapy protocol that I am going to have and this is a major reason we chose this Dr. and this hospital. On Monday I had my two ports put into my body. One is in my chest and in my abdomen. The chemotherapy will be administered into these ports over the next few months and so I will feel like a bit of a robot but this is the best way.

I have the most wonderful support system in the world and this is something that is helping me every day. My spiritual side has always been strong but I have kicked it in gear and I am making sure that as this medicine is going into my body that I am focused on healing myself completely and doing my best to keep my spirits positive and focused. My Mom is here with me every day taking care of some of the things I cannot do when I don't feel well and she happens to be the best cook in the world so all of you should be really really jealous (sorry Bill).

Chemotherapy starts next week August 24th. I am admitted to the hospital Wednesday night, Thursday starts 24 hours of IV Taxol, Friday morning is a few hours of IP Cisplatin and then I have another week until I go in for an outpatient treatment of IP Taxol. There are 6 cycles of 21 days each unless my blood counts are low and they have to postpone treatment. There will be side effects all of which may happen or some may happen... I am prepared for whatever comes at this point.

So.. everyone should be caught up on my situation at this point. I will be sure to share what is going on with me as much as possible. I want all of you to know that I am here to fight and I am here to live. This is a very difficult situation but I have already experience beauty in spite of everything else. Sean is the love of my life and every day I feel blessed to have him as my partner. My family is here with me and it is wonderful to have them so close to me in my everyday life. I have missed them with the long distance and it is a unique opportunity to spend quality time with them. My more distant family and friends have all come out of the woodwork to show me how much they love me and that they are praying for me or their thoughts are with me.

I have realized that in my every day busy life that I have lost touch with many people who are very important to me and who add meaning to my life. I became too busy to communicate and share and forgot how important these relationships are to me. So I thank cancer for this new perspective and whatever else I will be learning in the next few months... but now it is time for cancer to leave my body - for good. I will using all of the energy that is being sent my way to get through this time. I thank you all for being here with me.

With Love,
Marissa