I didn't want to be part of this cancer-survivor club--which I say with all due respect to those who have already had to deal with this challenge. Enduring a health crisis of this magnitude wasn't on my agenda for this year, or even this decade. On the other hand, my symptoms had been so severe, over so many months, that when I finally heard the initial diagnosis I was totally dismayed but not entirely surprised.
And now here I am, over four months post-op, part of a world I never expected to join. I’ve already written a couple of diaries alluding to what’s been affecting me so far, and I’d like to write a couple of others—one, to salute my darling cat Coco, the cancer-fighting cat! And one as a kind of Public Service Announcement especially for women of a certain age.
But since Sara R has so generously put forward my name for a Community Quilt, I thought it’s high time for me to post a diary about my personal experiences to date. And they are pretty personal, so please consider yourself warned.
I wrote a first draft of this diary back in mid-February when I was about to go into surgery, and when the gynecological-oncologist gave me a diagnosis of a tentative, clinical Stage I. Now we know differently. While I was under the knife, the oncologist saw some obviously cancerous lymph nodes, some in my pelvic region and some even up along my aortic artery. One was so seriously stuck to my left iliac artery that the surgeon could only dissect it, leaving a thin little shell of cancerous tissue for the chemo to address. (It came to either leaving that, or losing my leg, she remarked later to my husband and me.) So that puts my cancer at a Stage IIIC2, far worse and more critical; my prospects are not quite grim, but they are also not nearly as good.
And so even as I write about my own relatively positive experiences to date with treatment, I also say this with more urgency: please, women, if you are peri-menopausal or post-menopausal, and you have ANY unexpected vaginal bleeding or discharge—even a clear or almost colorless one—get it checked out. Don't wait. If it is the worst case, some sort of cancer, it is so much easier, quicker and cheaper to get it treated early. I know it's not easy to get it done when you're not insured. When this first emerged for me, both my employment and my health insurance were very unstable. And now I count myself among the tens of thousands of Americans whose health and lives are put at risk because of our lack of comprehensive health care at reasonable cost for all. But it wasn't worth the few thousand dollars that it might have cost me out-of-pocket to wait until my coverage was more assured.
Please join me below for more of my story to date.
I just had my fifth chemo treatment on Tuesday, July the 5th. It was a busy day in the infusion lab, the day after the holiday, but I got in relatively quickly. The place I go is ALWAYS crowded because there are so many people dealing with one sort of cancer or another. The chemo drugs themselves (Adriamycin and Cisplatin) are very toxic, and the infusion process they require has never been easy for me. Largely out of vanity I refused to get a chemo port, and so each IV presents a new challenge. Let me say now that I had no idea that I’d need to be poked so much. But the process requires at least one IV for blood labs before each (monthly) consultation I have with the gynecological-oncologist, and then at least one for each infusion. Out of the five I’ve had to date, three have required more than one stick for me to complete the treatment.
Many of my physical side effects have been comparatively minimal, though not all. None of them is fun, as innocuous as they may seem. Usually I have serious heartburn and constipation after the infusions for about a week. I get mouth (canker) sores and hiccups. Everything tastes obnoxious for the first week, and for most of the month I have a terrible chemical smell in my nose. At the end of the first week of chemo, when the anti-emetic steroids have run out, I hit the wall in terms of energy—can’t get out of bed at all for a day or two. (This is at least an improvement over the aftermath of my first chemo, when I was so fatigued I could not even climb the steps to my bedroom. Fortunately, my dear husband was tender-hearted enough to sleep on the floor next to my sofa all night, in case I needed anything urgently.) All my fingernails have white stripes, one for each treatment. I have lost ALL of my hair, some of which may never grow back.
The oddest thing for me to get my mind around—except during post-chemo week, when I really do feel lousy—is that I am so sick. Since my surgery (which was very skillfully done and from which I recovered quickly) I have generally felt better than I have in months. The eight months of bleeding I endured before the surgery was so debilitating, and of course the growing and active tumor was so dangerous, that to have that behind me has made me feel much, much healthier. In fact, I prefer to consider myself a basically healthy person who has hit a rough patch. We’ll see, but that’s my usual stance, until I hear otherwise. Sometimes that’s easier to say than others.
My immune system took a serious blow from the first round of chemo. I went into that first treatment only three weeks post-surgery, not realizing until later the reason for the haste to get chemotherapy going—after surgery, when the major tumor is removed, often the auxiliary sites act up. (Maybe it’s just as well I didn’t know that at the time). Ten days after the chemo, my blood was drawn to check on a number of items. Unfortunately, my neutrophils (a major component of my white blood cells) were dangerously low—at a 0.4, when 1.0 is low and 0.5 is severe. I was directed to head to the hospital for an injection of Neupogen, a bone-marrow stimulant. I then had my blood re-tested the next day, only to find the level had fallen to 0.2. I got another shot of Neupogen and tried to go about my business. By the end of that evening, I was in the worst pain I have ever experienced; it felt as though someone were cracking my sternum open to do surgery without anesthetic. The next afternoon at about 2:00 PM, I started to run a high fever, and by 6:00 PM I was admitted to the hospital for 48 hours of treatment for neutropenic fever. Fortunately for my physical health, I did not have any infection; unfortunately in other dimensions, my inopportune crisis appears to have cost me my job. More below on that.
Since that awful incident, I have been receiving a shot of a more powerful bone-marrow stimulant, Neulasta, 24 hours after each infusion. So far, it has done a beautiful job of maintaining my white blood cell counts. It also costs nearly $9,000 per injection, which may be another reason why I am being pushed out of my job.
Of course, the emotional and financial impacts of a cancer diagnosis are impossible to overstate, and a huge challenge even for me to begin to describe.
I received my official diagnosis of “grade 2 endometrial adenocarcinoma” on January 20th this year, only 6 days after the D & C that produced the biopsy tissue. That same day, right after my husband and I heard the bad news, my gynecologist sent me to have a chest X-ray, to “R/O Mets.” It took me a while to decipher that code. It didn’t help me much when I did. (Fortunately, the gyn was able to call me the next day with the good news that my lungs were clear.) That very day also happened to be my older daughter’s 26th birthday—in an odd synchrony, the same age I was when I gave birth to her. She and my younger daughter, who is only 14, knew that I had had all these tests because I had been bleeding so much, and they needed to know the results, too. So over our birthday dinner, I told them both. I think you can imagine how tough a conversation that was for all of us.
Both my daughters are taking it hard, though differently. The older one has been very helpful, but I know it has been taking a toll. She was in her first year of law school this year, and I fear that the extra emotional pressure did not help her at all. The second one is a basket case. She somaticizes much of her distress and won’t talk about it freely at all. We are frequently at odds, and I am usually at a loss about how to get through to her.
My husband and I heard the initial bad news together on 1/20, and that was plenty scary for us both. But he heard the worse news, the Stage-III-stuck-lymph-node news, directly from the surgeon while I was still in the recovery room on 2/22. The bald statistics, not factoring in any aspects in my favor, give me a 50-50 chance of surviving to five years. And then, as I was waking up, apparently I insisted that I knew that something was wrong, that they had not gotten it all. Who knows whether I was merely apprehensive, or whether I had heard something while I was under. Still, this was a burden he had to carry alone for a couple of days, until the oncologist had a chance to talk with me directly herself. Only recently did he have the distance to tell me he was afraid we’d never see our first wedding anniversary, which comes at the end of this month.
We have had our stressful moments, neither one of us will deny it. We are both often still scared and anxious; temperamentally, I’m usually more fearful than he is. So I am continually grateful that he is as optimistic and resilient as he is, because he can usually keep me company when I am really down, and always has the ability to encourage me to keep on going.
Much of the strain on our household stems from the immediate financial pressure we are now under. The second day I was in the hospital with neutropenic fever was supposed to be my first day back to work (although in fact I had already gone in a half-day during my sick leave, and was in regular email and phone contact all along.) My employer called me up from a meeting to announce that they were unilaterally deciding to cut my hours and my pay, in the belief that I could not come back to do the job. No offer to accommodate my treatment, no negotiation proposed whatsoever. Their position was that they would continue to pay my health insurance until the end of my contract year, in exchange for me working half of my regular work-week, from home. (I have actually been forbidden to go to my office.)
I retained counsel immediately, and was able to negotiate at least a very small salary for the time being. But since my employer is a union, this has indeed been a bitter side-effect of the illness.
Losing 80% of my salary meant a drop of about 30% of our household income, overnight. Add to that the additional medical expenses, and we are already hurting. Through the “goodness of their hearts” my employer is maintaining my health insurance at least through September of this year (though I will point out I am working half-time to earn it.) At that point, we’re probably facing a COBRA insurance bill of $2000/month out of pocket. It may be possible to convert some of my husband’s earnings from one of his three part-time jobs to pay for group medical coverage—but that comes at another price, a 12-month pre-existing exclusion for treatment related to my cancer diagnosis. That means, to convert we’ll have to pay on two policies for me for twelve months. I’m not sure we can or will swing that; yet another uncertainty.
I know that we are already incredibly fortunate to be able to get by having lost so much. In this, our first year of marriage, we were looking forward to paying down some of our still-massive debts (especially mine, since I have huge student loans). We don’t have any savings to speak of; we drive 14-year-old cars, one with over 220,000 miles on it; we rent our house. The last bit of financial stability we’ve been able to secure recently has been a mixed blessing, in a way: only three weeks after completing my application for SSDI benefits, I was approved. My condition is serious enough that it’s on the SSA list, and in some ways that’s not a good thing for me to hear. At least I’m not on the compassionate list, which is some consolation.
Our income, once SSDI kicks in, will still be far below what we had had pre-diagnosis, but it looks like we can juggle and get by for the short term, at least. I am crossing my fingers and will be trying to pick up some free-lance work! (which is legal, as long as I remain below a monthly threshhold.)
[And while I am leaning toward self-promotion, let me take the opportunity to put in a plug for my husband's creativity and entrepreneurial spirit. He is a classical conductor, composer, arranger, music theory instructor, musicologist, and general all-around musician of the first order. If you are interested in commissioning a piece from him, typically text set to music, please feel free to send him a PM--his handle here is provokingmeaning. His work is beautiful, it touches souls and it wins awards. It deserves the widest audience possible (and I don't say that only from being a devoted wife.)]
I have not wanted to approach this diagnosis or my treatment as a “learning experience,” frankly. I may be somewhat touchy-feely, but I feel as though I’ve had plenty of learning experiences and wasn’t looking for any others. Still, I have been deeply touched and moved by the outpouring of support I have had from many people in my life, communities to which I have already belonged and which I have just joined.
Beyond my husband and children, my sister in particular has been very kind, thoughtful and present. In the first couple of months, she took time off work to travel up from her home in Ohio to help us get back on our feet, organizationally and emotionally. I have several good friends in town and away who keep me in the loop with conversation, emails, cards, walks, and activities—like knitting, which I have taken up for the first time ever. During my 48-hour hospital stay, I had several friends come by to keep me company, including one who relieved my husband and older daughter and stayed until 2:00 AM. Their solicitude and love mean the world to me every week.
Other friends and relatives have provided more practical help, including money (which is a BFD, as you can imagine) and food in the first days when we didn’t know which end was up. I have a beautiful “memory board” right above my monitor covered with cards, photos, and email messages that buoy my spirits. Many, many people have added me to their prayer chains, and I extend my sincere gratitude to them as well.
I’ve been blessed by having a Cancer Support Community center in my town, and I take great pleasure in participating in t’ai chi, meditation, yoga, and a weekly support group for people living with cancer. It’s a wonderful resource, and we supply a lot of help to each other. I like the social worker I see on occasion to help me work through some of the tough spots—for example, how I can best respond to dealing with a terribly intimidating radiation oncologist, who basically scared the shit out of me during my consultation with him last month.
And I am also very grateful to the Kossacks here who have extended themselves on my behalf. Your virtual support is also so important. What is more powerful than an idea, after all? I do believe in the power of love.
If you’re still reading this far, bless you! I have an additional favor to request. Sara R has posted two Community Quilt diaries on my behalf so far. I am linking to the later one here: "Community Quilt for peregrine kate--Round 2"
It would mean so much to me if you were to leave me a message. And if you can afford it, I would really appreciate you making a contribution to the quilt production itself. Much of what Sara and Ann do remains a labor of love on behalf of all us Kossacks at large, but we don’t have to perpetuate their self-abnegating ways. :)
I promise I will get my other two diaries up soon. I do want to give proper credit to the pootie-power I have operating on my behalf, and I also want to go more into the gory details of endometrial cancer—especially symptoms & treatments. In the meantime, though, I wanted to share part of my story, in the hope that it will be heard.
Thank you, and peace and blessings to all.
Sun Jul 10, 2011 at 7:41 AM PT: Update:
Thank you all for boosting my story to the rec list this morning. I am humbled and grateful beyond words for all your support, so amply given to me as well as to my husband and family. I wish it all may return to you a thousand-fold.