I know I still owe everyone part 2 of the story of my diagnosis. It is partially written. Most of my posts take hours and hours to write, which means more like days and, of late, weeks. Now that summer is in full swing and with the introduction of a car into our lives, I have less time for writing, sadly. My life is filled with spending time with Josh and my children through frequent jaunts out of town during the weekends and doing little things with the girls (like taking them to camp and coloring with them and spelling words with Mia with magnetic letters). Yes, they drive me nuts often when they won’t change their clothes or eat their meals, but at the end of the day, I love them beyond measure. I’ve also rediscovered the joys of cooking again and make healthy, nutritious and yummy food that my children won’t eat. To be fair, Mia does try things but my little Isabelle is as stubborn as her mother. In a couple weeks, we’ll be going to Costa Rica for a friend’s wedding and then an extended vacation; it will be a fabulous experience for all of us (although I’m absolutely dreading the five-hour car rides between locales with my young children — they are city children and each time we get in our car, they both yell and scream about how they’re going to get carsick (which they don’t)). Belle celebrated her third birthday on Saturday and I threw a very little birthday party for her that she and everyone else seemed to really enjoy. All-in-all, Josh and I have found a new equilibrium that is working for us. And sometimes, we even manage to forget that I have cancer and can truly live in the moment with a joyous abandon I’ve never known. Sometimes…
Alas, the realities of cancer and that part of our life always resurface, and I and Josh have to deal with them. So, this post (which won’t take me days and weeks to write) is an intermission in my story telling so that I can let everyone know about all that’s been going on.
I will start with the good news. As I reported a few weeks ago, my PET scan in June came back clean (from which I draw some comfort but not a whole lot of comfort considering their imperfection in detecting pertioneal metastases, which is my area of concern). I took the scans to my HIPEC surgeon to have him confirm the reading, which he did. Because of the unreliability of the scans, I’ve always pushed for a diagnostic laparascopy at some point (where he’d go in with a camera through a little incision to take a look around). The HIPEC surgeon, as well as my oncologist, have always been amenable to it. He is in the process of starting a study to assess the effectiveness of diagnostic laparoscopies post HIPEC, and it looks like I will be a part of that study come October when I complete this current cycle of chemo, assuming there are no hiccups before then (like obvious new tumor growth or something like that, which would probably necessitate something more drastic than a diagnostic laparoscopy). Josh being the wonderfully smart husband that he is immediately researched and found what he could about post-surgical diagnostic laparscopies but there really isn’t much out there. I’m not really sure whether it’s tenable to have exploratory surgery like this as a routine part of monitoring. Assuming nothing shows up on future scans, am I going to be opened up every year to see if there are new tumors in me? Well, we’ll cross that bridge if and when we get there.
The other bit of good news — my CEA went down to 4.8 as of two Mondays ago. I wasn’t supposed to be tested that day because I’d only been tested two weeks earlier — I’m on a monthly CEA testing schedule — but someone put it the order by mistake. It dropped 2.1 points in the span of two weeks. Josh and I were obviously happy about the news but we didn’t share it broadly. 0 to 5 is considered normal, but really anything that high in the range of normal is considered truly normal only for smokers. So if I were a smoker, I might be happier, but I’m not so I’m glad the number is trending down but will be happier if it gets to 1 or less and stays there. I’ve been in the 4 range before so I know how elusive a “normal” CEA can be. It’s hard to say whether the CEA is going down because of the chemo killing cancer or the reduction in post-surgical inflammation. The further away I get from the HIPEC surgery in March, the more accurate the CEA reading becomes.
Now on for the not so good news. In truth, there really isn’t anything bad to report (yet). The following updates are just part of the sobering realities of being in treatment and the consequences thereof. So I will outline in my lawyerly fashion the individual issues from least annoying to outright stressful. This might be a little TMI for those of you who don’t have cancer, but I write this for informational purposes for those who have my disease or who will be diagnosed with my disease.
Nausea — The nausea I have on folfiri is marginally worse than what I had on folfox. It’s annoying, but I’m able to eat through it and it can be managed with the appropriate meds.
Elevated Blood Pressure — I restarted the Avastin on May 27 — we had to wait until my oepn wound from surgery had healed sufficiently as Avastin can cause bleeding and further delay wound healing. Since then, I’ve seen an uptick in my blood pressure. This happened while I was on folfox and eventually the elevated blood pressure had to be treated with a low dosage medication. Avastin, really seemed to help in dropping my CEA dramatically while on folfox so elevated blood pressure that can be controlled with medication is an acceptable trade-off. I haven’t gotten to that point yet this time around, but I expect to go back on the blood pressure medication before too long.
Bloody Snot — The Avastin also causes bloody snot and buggars. Annoying and sometimes disconcerting to see the blood, but nothing so horrible.
Eyelid Twitching and Trouble Speaking — As I mentioned previously, about an hour into each infusion, my eyelids start to twitch like crazy and I sometimes have trouble enunciating because my tongue feels somewhat enlarged. The first time it happened at treatment #2 on folfiri, I of course dutifully told my nurse. This isn’t a typical reaction. The oncologist wanted to stop the infusion at 80% completion. I thought about it for five minutes and told them that I wanted to complete infusion because I didn’t feel like the reaction was life threatening. Folfiri is my last real good proven treatment and I’m unwilling to compromise its application unless I feel like my life is in danger. Of course, hospitals and doctors are always going to be worried about their liability and so they’ll stop treatment if they’re afraid. I’ve found as the patient that you really do have to advocate for yourself because only you know your body and what is a true danger as opposed to a annoying but overall innocuous reaction. This particular issue always resolves about an hour after infusion.
Fatigue — There is a noticeable increase in my fatigue levels with folfiri. I suspect that’s due to the cumulative effects of all the chemo I’ve had, in addition to the after effects of the HIPEC surgery. Whereas with folfox, I could go to the gym and cycle the day after infusion, I don’t feel so inclined these days, although I have been really picking up my workouts recently, especially during off-chemo weeks. For the first time in months, my strength, meaning the strength reserved for the gym, is coming back.
Weight Gain — The steroids and probably the recent indulgences in ice cream — I have to eat all the ice cream my kids never finish after all — are making me gain weight. It’s the kind of water weight that I find really annoying. I am recommitting myself to the gym with the goal of returning as close as possible to my pre-cancer workout schedule.
Mouth Sores — The mouth sores are worse with folfiri. I’m getting one about once every two weeks with them lasting for about a week. I had maybe three minor mouth sores while on folfox. They can be painful. I will need to be better about using the mouth rinses recommended for addressing this issue.
Hives — The first occurrence of hives started two treatments ago, the Monday before the 4th of July, during an off-chemo week. It was exactly a week after my previous infusion and I started itching Monday night. At first, since the itching was on my scalp, I thought it was lice. (I’ve had experience with lice and have taken my girls, myself, my husband and my nanny to a lice lady (one of the many orthodox Jewish women in New York City who specializes in finding and ridding you, your family and your home of lice with chopsticks or pencils in hand)). [Side Note: if you ever need advice on how to do this without using harsh frightening chemical shampoos and spending hundreds of dollars on a lice specialist, just ask me. The lice experience was quite the cultural adventure for us which maybe I will share another time.] Anyhow, when I woke up in the middle of the night itching all over and felt raised bumps on my skin, I knew it was not lice (which oddly enough was a relief). Then, I thought it was a food allergy (even though I never get food allergies). I’d eaten a lot of sugar kiss melon that day and thought maybe I’d suddenly developed an allergy to sugar kiss melon. When I was still itching 24 hours later, I decided to email my oncologist and internist because I was convinced it was a chemo side effect, even though it was happening an entire week after infusion and even though I was already five rounds into folfiri. The oncologist told me to take Benadryl, which I did, and that seemed to really take care of the issue. I did go to the dermatologist which was completely not helpful. The hives broke out again after my 6th treatment of folfiri at exactly the same time during the two-week period, on a Monday night exactly a week after my previous infusion. Now, I knew without a doubt it was a chemo side effect and this time it was marginally worse. I took Claritin the next morning and then Benadryl that evening and it seemed to clear up quickly after that. My oncologist is now, after the second occurrence, also convinced that it’s a chemo side effect, a very unusual one, but one nonetheless. He doesn’t believe it to be life threatening. Although I find it annoying to be so itchy and hot, I too don’t believe it’s life threatening (meaning that it isn’t accompanied by any shortness of breath or other respiratory issues). But I will be monitoring myself closely. Yesterday, as an added precaution, my oncologist gave me Benadryl which completely knocked me out, so I wasn’t able to watch my favorite cooking shows on the Food Network during infusion. Bummer.
Hair Loss — Well, after holding on for so long through 12 rounds of folfox and a handful of rounds of folfiri, my hair is finally starting to weaken under the assault. It is collateral damage in this war that I’m going to have to come to terms with. I don’t expect I will have total hair loss, but I suspect there will be significant hair thinning. At this point, Josh, I and others who see me daily notice it. Soon, I’m afraid others will too. I know hair is just hair, and everyone tells me that it will grow back and even thicker probably. But I’m afraid that I will never be off treatment and that my hair will never have the opportunity to grow back. I’ve always had thick straight hair and lots of it. During pregnancy, I grew even more hair and after I stopped nursing, even as most women shed that pregnancy hair, mine never fell out. Now, I can feel a single hair fall onto my arm throughout the day. Other than looking fit, I’m the last person to care about looking good — I never do my nails, never put on makeup, never buy new clothes, etc. But losing hair is really upsetting, even for those of us who care little about our appearance. It’s a sign to the outside world that you are sick, that you are battling a life threatening disease, and to some degree it carries a certain shame and humiliation. I should be used to having my weaknesses be obvious for everyone to see. Nearly all my life, I’ve walked around with thick glasses and obvious nystagmus that makes it apparent that something is wrong with my vision. I used to be really embarrassed and ashamed of my visual disability, but at some point I realized that my signs of weakness were actually a badge of honor and pride, a symbol of what I’ve had to endure and what I do endure, a testament to my strength. I try to tell myself the same thing about my hair loss. I don’t think I’m convinced yet.
Blood With Bowel Movements — Two Thursdays ago after my 6th treatment of folfiri, I had blood with a bowel movement. It was the first time I had blood during folfiri — I think I had a minor incident or two during folfox but nothing alarming. This time I was more concerned because there was a lot of blood. My mind started racing, for I was convinced that I had a recurrence in my colon and that there was another tumor in my colon bleeding out. When it happened again on Saturday night (and worse that time), I emailed my oncologist and internist again the next day — they must be so sick of hearing from me — and the oncologist asked if the blood was separate from the stool. If separate and bright red, then the bleeding was likely superficial (i.e. hemroids). It was both those things. He told me to come in the next day anyhow. We were away that weekend. I went into the pool after sending the email and after that the bleeding stopped. Go figure. I went in as instructed. My blood was drawn. My hemoglobin was in fact higher than what it had been before my last treatment, which was surprising in a good way. Usually, chemo wreaks havoc on your blood counts (especially only a week after treatment), and my hemoglobin is usually not so high, even two weeks after treatment. A healthy hemoglobin was a good indicator that I didn’t have a tumor in my colon bleeding out.
[Side Note about nutrition: I was mystified as to why my hemoglobin was so high however, and I’m convinced that it was because I’d been eating meat that weekend, veal and chicken to be precise. Initially, when I was first diagnosed, I wanted to try a plant based diet and then I decided to be mostly vegetarian as part of an attempt to prevent the cancer from growing, but I’ve changed my mind. I study my blood work all the time and I’m convinced that while you’re in treatment or preparing or recovering from surgery, you need to eat meat and other meat products. You need the nutrients to heal. I’m not saying eat a lot of it but eat it in moderation. I do avoid processed meat. I try to always eat organic poultry and grass-fed beef now and rarely eat the latter. This and other attempts to boost my white blood counts through nutrition have proven to me that eating a well-rounded diet that includes meat is critical. Through 20 rounds of chemo, I have yet to receive a shot to boost my blood counts, which many I know have received with far less chemo. (Knock on wood!) Incidentally, I’m also not an espouser of the ridiculous notion that sugar causes cancer. The biomechanics of cancer cells are way too complicated to be controlled simply through abstaining from sugar. In the absence of sugar, cancer cells would find something else for fuel, like protein. As someone who had gestational diabetes during both pregnancies, I’m very educated about sugar and the harm it can cause. I try to be moderate in my processed sugar intake, which is just part of a healthy diet.]
I and the nurse practitioner spent a good while talking about what kind of stool should be concerning (because in the days since this had all started I of course had been studying my stool very carefully and was certain I saw tinges of red in the stool itself). Black stool, she said is what is concerning — blood when it’s not fresh anymore darkens and if you have a tumor somewhere in your colon or rectum, chances are the blood would turn the stool very dark in color, black it seems. I had no idea. The truth is that folfiri has me alternating between constipation and diarrhea and that whole area down there is raw and not happy. This would account for the bleeding. While no one thinks I have a tumor in my colon, I was advised to go see a gastrointerologist. I refused to go back to the gastrointerologist I saw last summer who failed to diagnose me. I don’t blame him; he just didn’t have enough time. Nonetheless, it would just bring back bad memories. Instead, I went to see a gastrointerologist who my oncologist recommends, who is a true expert in colonoscopies and similar procedures. Once you’ve had colon cancer, you really want a GI who won’t miss anything, not even that little polyp hiding in a bend somewhere. A person with colon cancer should have a colonoscopy annually. I’m due for one. At first, we had planned on waiting until this cycle of chemo was over in October (to reduce the risk of bleeding), but in light of the bleeding I’m having and the need for some peace of mind, everyone agrees that it’s okay to do one now, even if it means holding the Avastin. The colonoscopy through which I was diagnosed last July was performed by a GI in a shitty hospital under less than ideal circumstances so I’m worried that he may have missed polyps or other growth. It isn’t unusual to have problematic growth in different areas of the colon (although if the problematic areas are of the same tumor biology, then the chemo should be killing anything that was missed in the first colonoscopy and any new growth since then, and no, the scans I’ve had wouldn’t have necessarily picked up an issue in my colon; a colonoscopy is the only way by which colon cancer can be diagnosed). For all those reasons, I went to see my new GI, Dr. K., this morning with the intent of scheduling a colonoscopy. She is a lovely lady who appears very competent. She also listened to my blubbering, hugged me and even shared a few tears with me because I totally lost it in front of her, what with everything that is going on. I mean if it were just one or two of these issues, that would be okay, but the combination gets to be a little much sometimes, and you haven’t even read about my final and most stressful issue which I’m going to tell you about next. My colonoscopy is scheduled for next Thursday afternoon. I will try not to think about it until I have to start cleaning out my bowels on Wednesday afternoon
Damn Insurance Company — I received a notice last week that my insurance company will not cover the Avastin I’ve gotten post HIPEC surgery on the grounds that it is a third line of treatment and has not been proven to be medically effective. The medical consultant who made the decision for the insurance company is a doctor of emergency medicine. It’s like my internist making a decision about the appropriateness of Avastin. Completely absurd! We, as in my oncologist and others at NYU, believe that the idiot doctor of emergency medicine may have considered HIPEC a second line of treatment and now I’m on the third line of treatment with Avastin being given again; why indeed if it didn’t seem to have worked the first time with folfox since I then needed to have HIPEC and more chemo afterwards. Avastin is in fact most definitely a first line treatment and very proven to be medically effective. I forwarded the notice to my oncologist’s office immediately in the hope that NYU had processes in place to deal with such matters. And of course they do. During infusion yesterday, as I was trying to fight off the effects of the Benadryl, I spoke to the financial counselors and signed some papers. NYU will represent me in the appeal process before the insurance company. My oncologist will fight on my behalf, with the weight of all the studies to back him. The financial counselor also wanted me to apply for an assistance program offered by Genentech, the pharmaceutical company that manufactures Avastin. I won’t qualify for financial assistance but they will assist NYU in fighting the insurance company with their own data. Because we knew the insurance company’s position on Avastin, I was no longer financially cleared to receive it yesterday, unless I paid for it myself. NYU charges the insurance company $38,000 for each infusion of Avastin only (never mind all the other drugs I get at each infusion). I doubt the insurance company actually pays that amount and instead pays a lesser amount agreed to by private contract. Such a ludicrous game they all play… Anyhow, NYU offers a very generous discount — I’m being sarcastic — for patients who pay out of pocket, reducing the amount I would be charged to $10,000. Josh was prepared to drop the 10 grand right then and there; he said he would be willing to go bankrupt to save my life. Such a wonderful husband I have, indeed. I’m not so sure I’m willing to go bankrupt. I called my oncologist on his cell phone from my infusion chair and asked him if he thought I needed the Avastin then and there. He said missing one infusion would not make a difference and that he would fight the insurance company so that hopefully this is all resolved by the time of my next treatment in two weeks. If not, I could drop the 10 grand then. So I didn’t have Avastin yesterday (which probably worked out for the best since I just scheduled my colonoscopy for next Thursday). I’m not so optimistic that all of this will be resolved in two weeks. The notice indicated a 30-day response time after receiving our letter of appeal. So, I’m preparing to spend $10,000 in two weeks and maybe again two weeks after that. If it goes on much beyond that, I’m going to get really really stressed. If we win the appeal, then we’ll be reimbursed, but I’ve no idea when that will be. Money matters are very stressful, even when you are in a somewhat financially secure position.
Last night, Josh researched the possible harm of missing one infusion of Avastin. I don’t think he found anything helpful. This morning, he said he wants to consult with my HIPEC surgeon for a second opinion; I told him to feel free. I was more concerned about my hair loss and how I am going to emotionally cope. We each obsess about one thing at a time because if we obsessed and worried about everything all at once, it would drive us mad. So hopefully, by having unloaded all my problems in this post, I can return from the intermission, forget about the realities of life with cancer and have some peace for a little while, until the next thing pops up that is.
P.S. I shared this article on my Facebook page this morning.and wanted to share it here for those of you not connected to me on Facebook. I never share articles about cancer, but I thought this one had good advice for friends of people with cancer and their families. Read it if you have a moment for my and Josh’s sake. Thanks as always for your support.