Sunday, December 13, 2009

LouisaECChemoDiary

For the record, it appears I have the most supportive circle of family and friends in the world. You all have been amazingly supportive over the past month. In return I have been less effective in communicating back. Let me start by stating clearly how deeply touched and supported I have been by your communications. Never doubt that it makes a remarkable difference. I really really really appreciate every thing you all have done to support and help me.

I started this blog because I am finding it impossible to maintain adequate communication with every one. So at the suggestion of several friends and relatives, I will be periodically updating this blog on my status as I move through this medical journey.  You all are welcome to check in as frequently or infrequently as suits your interest.

Just to get everyone to the same page - this photo of me and my cousin Nathan (well, to be specific, one of my several cousins "Nathan", but at this point I think the most senior one) dates from last March 2009 when we had a rather large family reunion in Wilmington, NC to celebrate the 85th birthday of my Aunt Rita, more than a year after she finished taking chemo for ovarian cancer. 

That is the same Aunt Rita who called from her assisted living home in Arkansas the night before my surgery to assure me that if they were needed she and cousin Robbie would come immediately to take care of me.  (Well, one of my several cousins "Robert" but at this point, I think, the most senior one). 

Digression: 

The Chapmans / Walkers / Hyatts /  all suffer from that southern British-Isles-descent syndrome where at some point early in human history each family was issued only 3 or 4 male first names that they have to keep shuffeling about in combination with maternal maiden names to cover male offspring for generation after generation. Think I exaggerate? Ask me how many cousins "James" I have (on both sides of the family). Ask me how many men on the Chapman side carry "Davis" as their first or second name. Ask me how many decendents of the Robert Walker who landed with the first ship in the Mass Bay Colony are currently named Robert? (Actually I have no idea, but at least 3 from the western North Carolina branch that I know of). Ask me how many "Judsons" were hanging out in the NC/GA portions of the family as of March 2006 (at least 5 that I can immediately count). Ask me the largest number of roman numerals officially carried after the last name of a contemporary male cousin (V - I think). Ask me how many...well that is enough for now. Back to the main point. 

Thanks for all your love and support!
 
In early October 2009 my doctor evaluated me for swelling of my right leg, assumed to be due to long hours sitting working on H1N1 Flu response and long standing venous insufficiency in that leg (Varicose veins for the non-medical). Tests showed no evidence of a blood clot, so I was cleared to depart for a long planned vacation as long as I took appropriate precautions.

I had a wonderful trip to Italy and Kosovo between Oct 11-22, but returned a couple of days early because the swelling continued and worsened. To make a long story short, this time the evaluation still showed no evidence of blood clots, but did identify masses in my pelvis that were compressing the right iliac and common iliac veins. (Big veins in the belly that allow blood to return from the legs). 

October 30 I underwent major abdominal surgery (exploratory lap) that identified ovarian cancer stage III C ( meaning a large mass on each ovary,a few implants on the colon and in the pelvis and cancer cells in 3 of 4 lymph nodes).  (For you medical types, Papillary Serrous adenocarcinoma, high grade). The good news is, the surgeon was very very confident that he was able to debulk (remove) all tumor, and there was no ascites (fluid in the belly). These make it more likely that I will have a good response to chemotherapy.

     Recovery from surgery was easier than I anticipated (still would not recommend it for fun) in no small part due to the decisions by my cousin Jane and sister-in-law Debbie to come stay with me for the first couple of weeks after surgery - during which time in addition to waiting on me hand and foot they did a lot to improve the organization of my home. 

     Next major decision was what to do about chemotherapy - with options being standard intravenous (IV) chemo (by vein), standard intraperitoneal (IP) chemo (put directly into my belly) or join an investigational trial. After much helpful consultation from the Emory surgeon and oncologist (Dr. Ira Horowitz and Dr. Joan Cain - both excellent and recommended) and with colleagues who are oncologists (N=1) or who know and consulted 1 or more oncologists (N=many many many) in the end I decided to join a clinical trial.

The trial, GOG-252 (stands for Gynecological Oncology Group), randomized the women who participate in it between 3 arms. Regardless of which arm they are in, they will get some variation on standard therapy. One arm is IV therapy, and the other 2 are IP therapy. All 3 arms are tweeked a little bit from the usual standard in ways that evidence suggests or there is excellent reason to believe will be improvements (fewer bad effects, more benefit).  In addition, all women enrolled in the trial will get the new drug Avastin in addition to standard therapy. This drug inhibits the ability for cells to develop new blood supplies (inhibits angiogenesis). Since the blood supply to a cell provides nutrition, this drug basically starves new cells. Since cancer involves lots of new cells, it has been remarkably effective in some cancers (colon, prostrate). There is no real experience with ovarian cancer, which is why it is a clinical trial. But evidence to date makes many people hopeful that it will offer real benefit and suggests that is it unlikely to cause harm. 

So in other words, if you enroll in the trial you get a variant of standard therapy, so you lose nothing. But in addition you get an additional new drug that may or may not help. At best it helps and you get a much better outcome. At worse it does not help and by participating in the trial you contribute to the development of knowledge that allows doctors to be smarter in how they treat patients with similar problems in the future.  Well, OK, the real worse is that you have an adverse reaction to the drug and something bad happens because you took the experimental drug, while you gain no benefit.  While that is possible, I think the liklihood that it will happen is low enough that I am willing to take the risk.

So I enrolled in clinical trial GOG-252, was randomized to arm 1 (standard IV therapy plus Avastin) and began chemo therapy on December 7, 2009 - my 57th birthday.

Tomorrow I go for my second day of chemo. Since I am a little tired tonight, I will leave the update on the first and second chemos until after I get home tomorrow. Or possibly one night later next week.  

Again, thanks for your wonderful support.

3 comments:

  1. Hi Louisa,

    I wish you well with the chemo, and that the experimental drug does its thing, big time.

    Your gentle wit and lucid style make your writings always a "pick-me-up", even when some of the content is not so cheery, as here. This is one of your many gifts. Thanks for sharing it.

    All my love,

    -Jim J.

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  2. Louisa, I am so surprised to hear about his and sorry you are having to go through it. I hope the chemo regimen will be no more difficult than I suppose it must be. I am so glad to hear that the debulking went well. We are thinking of you- maybe we will get to see you over the holiday?

    Love
    Elizabeth and David

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  3. Thanks for posting your updates in this way. Thus far in life I have worked to maintain a "low profile" on the web. This includes being unwilling to create a Facebook account - or even to accept the "befriendings" I have received by my Facebook-Savvy friends! If this works as I imagine, I might even create a blog!

    I will be thinking about you on Day 2 of your therapy. Although I sorry I could not see you on Thanksgiving, I am sure you had a more memorable Day surrounded by your family! I will hope for an "in person" visit during a future visit to Atlanta!

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