Relationship with Cancer

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

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

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)

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!

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...

...for shaving our heads.

No turning back...

Get it off me!

Before it falls out!

Husband and Wife

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

Thank you Norayne!

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

The Interim

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

Who sent this to me?? I love her!

My Mom

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!

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.