What Now???

It’s 3 o’clock in the morning so I’m going to keep this as short as I can. It’s been a few weeks since my last post, and I know some are wondering what is going on. I haven’t written because things have been crazed! First, there was Thanksgiving, during which we traveled for 5 days which entailed flying four hours and then crisscrossing the state of South Carolina and parts of North Carolina in a rental car over the course of eight hours. Then, the day after we returned, work on my kitchen/dining/living room began. For the last week, we’ve lived with dust, holes in walls and ceilings, exposed wires and steel studs, the dining chairs and coffee table hanging out in my bathroom, plastic covering our couch, my kitchen knives sitting on my bedroom window sill and Josh asking me where the paper towels are and me telling him I don’t know. I’ve been busy staring at the six squares in various shades of beige painted on my wall as I hold up a fabric sample of my soon-to-arrive new couch and a chunk of the textured faux wood, the same material from which my new entertainment unit is being constructed. I’ve been completed engrossed in conversations about what kind of LED lights to install under the kitchen cabinets and whether the contractor can mount the TV just a couple inches lower. And in what I feared would be the most stressful aspect of all this, I’ve been frantically trying to sell and give away all my dining and living room furniture through various means to make room for all the new furniture.

There was a surreal quality to all of these acts of incredible normalcy, like I wasn’t supposed to be standing there talking to my contractor about such mundane and trivial matters when I have cancer, like there was an unnerving incongruity between such ordinariness and the monumental questions of life and death I have faced and continue to face. I acknowledged the surreality, even embraced it, for in doing so I rejoiced in the act of living, ever so grateful to be able to do what I was doing, ever aware that it could all slip away from me in the blink of an eye, with the next CEA test, with the next scan, with the next strange pain.

The surreality was only accentuated by the fact that a couple days after returning from our Thanksgiving travels, I went to DC for two days to attend a conference on colorectal cancer, where I learned a lot, reconnected with old friends and made new ones. There, I lived squarely in the cancer world, speaking the language of cancer and finding a nurturing kinship with those who live with the same struggles as I. Even so, I still managed from afar the disposal of the furniture and the continuing work on my place and, of course, I coordinated meals, school pickups, etc. with my babysitter.

Amidst the holiday, the redecorating, the conference and all the other activities that now comprise my life, I worried, sometimes a lot. For a couple weeks after I last saw my doctors, I allowed myself to push the worries about cancer aside as I gave my oncologist some time to connect and consult with Dr. Lin about the ADAPT protocol. Plus, I was dealing with another annoying medical issue – hives that had covered 75% of my body. I’ve been to the dermatologist five times within the last three weeks. I was freaking out initially because I thought it was some delayed reaction to chemo but the dermatologists – there has been more than one because the young dermatologist had to call in the senior member of the practice – doubted my self-diagnosis; chemo ended two months ago, highly unlikely. They did a biopsy. Oh my God! Is it cancer? I demanded of the dermatologists. No, definitely not, they reassured me. I must have sounded like a raving lunatic. The biopsy showed that I was having a hypersensitive reaction to bug bites, the ones from Costa Rica from three months ago that still haven’t healed. Apparently, all my scratching spread the itchiness around. Anyhow, they made me take oatmeal baths, take an antihistamine morning and night and apply ever stronger creams and now it’s definitely better but not quite entirely resolved. The senior dermatologist told me these hypersensitive reactions can take a while to resolve. Joy. But this is seriously small potatoes compared to…well, you know.

Anyhow, when after returning from our Thanksgiving trip and there was still no word from Dr. A.C. I decided to email him the first day of the redecorating and ask him what was going on. No response. The next day, last Wednesday, I decided to email his nurse practitioner, who is always very responsive. She responded within hours, telling me that Dr. A.C. had been trying to reach Dr. Lin but Dr. Lin had not responded. I replied, telling her I would see what strings I could pull in the colorectal cancer community to push Dr. Lin along and that I would be attending a colorectal cancer conference the next day and I would see what medical opinions I could get. That evening I called the cancer center where Dr. Lin practices and eventually got through to the person who helps Dr. Lin run his clinical trials, O. O requested that I email him my medical history and concerns and that he would make sure Dr. Lin saw the email that day and have Dr. Lin call my oncologist. I wrote and sent the email, copying my oncologist, who promptly replied to inform O that Dr. Lin could reach him any time on his cell. Sure enough, I got an email from my oncologist during the Friday night dinner at the conference, summarizing the conversation he had had with Dr. Lin.

The lesson I take from this little episode is that sometimes one has to be pushy with one’s doctors and sometimes one even needs to get directly involved to push various parties along. I view my oncologist, HIPEC surgeon, nurse practitioner and me as a team – and I believe they all share this view. I’m certainly not going to sit around and wait for my doctors to call me. Indeed, I expect them to ask me for help if the circumstances warrant it – I’m going to have to make sure my medical team understands this. In this case, a simple phone call by me to Dr. Lin’s cancer center and a follow-up email were what was needed for Dr. Lin (who I’m sure is incredibly busy) to pay attention to me and Dr. A.C.

Dr. A.C. said Dr. Lin “has interesting data.” The upshot is Dr. Lin isn’t sure ADAPT will work for me. First, his protocol doesn’t allow for HIPEC patients, which I assume means he doesn’t accept patients into his trial who have undergone HIPEC, which I assume further means that he doesn’t target his protocol for peritoneal disease. I will have to ask Dr. A.C. to further specify when I see him next. Second, his responders have tended to have a genetic mutation in their tumors called Pi3K, which I do not have. However, Celebrex does “down regulate” sox9, which I do have.  I don’t know what “down regulates” means.  [A side note about genetic testing of tumors: A couple months ago, I had my tumor genetically profiled by a company called Foundation One. Foundation One and companies like them test tumors for 250 genetic mutations. Such testing is quickly becoming the norm, so much so that some or even most insurance companies (including mine) will pay for it. The existence of certain genetic mutations can be prognostic indicators or can determine whether certain drugs will be more effective than others or even if certain drugs will actually encourage tumor growth. While these 250 genetic mutations can be identified, the medical community’s ability to act based on that information is still in the nascent stages. This is what stands at the core of what is called “personalized medicine”. I’m glad I had the wherewithal to have this comprehensive testing done because the information has already proved helpful.] Third and most concerning of all, I have a potential allergy to Celebrex. When I was in the throes of my hives episode a couple weeks ago, I went to see my internist about it and mentioned in passing that Dr. A.C. and I were considering ADAPT. My internist asked me if I had an allergy to sulfa – he must have remembered this fact about me. He said if I am allergic to sulfa-based medications, I cannot take Celebrex. Seventeen years ago, I was prescribed a 10-day course of an antibiotic called Bactrim, which is sulfa-based. On the ninth day of taking the antibiotics, I developed mild hives. I went to my college’s infirmary and was told by the nurse there that I must be allergic to the sulfa in the Bactrim and that I should stop taking it. Ever since then, I’ve always said I have an allergy to sulfa. My internist, who was copied on Dr. A.C.’s email, says that Bactrim has an unusually high incidence of allergic reactions. So the next step is for me to go to an allergist to determine if I really do have an allergy to sulfa. If I do not, Dr. A.C. says we can “consider” ADAPT — not exactly a ringing endorsement.

I saw Dr. Marshall at the conference. He spoke at my fundraiser in September and is a very well-known GI oncologist out of Georgetown. In fact, he and Dr. Lin are good friends and I hear that the two of them are about to collaborate on research. Except in one instance, Dr. Marshall does not prescribe ADAPT. Indeed, I’m learning that many oncologists do not believe in the protocol; I don’t know why (perhaps because of the toxicity profile of such high doses of Celebrex, particularly to the cardiovascular system). Dr. A.C. said to me when I first brought it to his attention that although he was willing to put me on it, he thought it was odd that such a seemingly successful trial that began in 2007 was still only in Phase II. Dr. Marshall would put me on Xeloda and Avastin (which is the same thing as 5-FU and Avastin and the same maintenance regimen I was briefly on before HIPEC and for which there is no convincing evidence); Xeloda is the oral form of 5-FU. Dr. Marshall will readily admit there is no convincing evidence about this type of maintenance chemo, but he believes I’m at high risk for recurrence and that I need to do something and that Xeloda is gentler to the body than 5-FU. There aren’t any other options, other than to do nothing. Women with breast cancer take a pill for 10 years as maintenance, and it works. There are no such options for colorectal cancer. That’s a direct result of the amount of money that has been poured into breast cancer research. Don’t get me started on the severe underfunding for research into treatments for colorectal cancer!  This whole thing, from the lack of a genetic mutation to a likely allergy to the absence of other options, is so incredibly frustrating!

So I will push my way into seeing the allergist my internist recommended this week, but I suspect I do have a sulfa allergy. Sigh… Next week, I go in for my monthly CEA test and I will discuss with my oncologist what we’re going to do now.

It is now after 5:30 a.m. I’m off to pack my girls’ school lunches. My unique brand of normalcy awaits.


1 Comment (+add yours?)

  1. poorab
    Dec 15, 2014 @ 00:26:44

    thanks for the update!
    I was waiting and wondering.
    your knowledge of all things oncology is rather stunning. I feel like I barely understand the medical terminology in them now!

    happy holidays and stay surreal!



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