Two Kidneys, Two Clots, and a Tumor Called Floyd

Cancer sucks on so many levels. Indeed, many liken the Stage IV experience to a roller coaster because of the ridiculous numbers of peaks and valleys with little time in between to catch your breath. And so it was for me a few weeks ago when I found myself hospitalized for the first time since being diagnosed with breast cancer.

I had been feeling really lousy for some months. But if you are from the Northeast or Mid-Atlantic region of the United States, you know how cruel and unforgiving the winter of 2015 had turned out to be. That I felt lousy and unable to really do much I chalked up to the weather. Any confusion or restlessness was the fault of a substantial lack of sunlight. And general crankiness I blamed on being lonely.

But on one particular Monday my ankle, that was sore for a day or two for no reason, had become so sensitive that I could scarcely put any weight on it. And more than any day before, I felt there was something intrinsically wrong with my body. I was nauseous more than I wasn’t and most mornings began with a short stint of dry heaves. Occasionally I was a little dizzy and I didn’t pee much. And that bloody primary tumor in my right breast was still growing. Only a week ago I had attended my monthly oncology appointment and, because the creatinine was a slightly elevated (which it has been for a year by this point) and my potassium ridiculously low, I had received some IV hydration and potassium. But on this particular Monday I called my oncologist in tears and was urged to take a taxi or call an ambulance to the breast center. I didn’t want to take an ambulance away from someone whose life might be on the line. I could not find a taxi, so I took the bus.

The only way that I could describe how I felt was to say that I felt weird and unsettled–just a general feeling of not being quite right. And I was concerned that the sudden and extreme ankle pain, even without swelling or heat, was indicative of a blood clot. After a blood test, I was informed that my creatinine level was “in the nines” and that I would not be going home. I was inpatient bound.

After what seemed like endless tubes of blood that went to the lab, I learned that my creatinine was so high that at first glance the attending physician thought I would need dialysis; I had acute kidney failure. My plump and happy kidneys had turned into shriveled raisins and I was severely dehydrated. That explained a lot of the symptoms I had been experiencing, not the least of which was not peeing very much. Worse still, a lung scan revealed the presence of two pulmonary emboli. Over achiever.

My job from there on out was to cooperate fully with my physicians and do what I was told for however long I was told to do it.  It did not matter that I desperately wanted to be no place else but home.

Mount Sinai is a teaching hospital and what that meant for me, of course, was a never-ending flow of doctors, residents, interns, and fellows that started at 6:00 am and continued throughout the day. And, as anyone who has spent time in a hospital will know, it was noisy, people spoke at the top of their lungs at 2:00 am, I was nudged awake for blood tests in the wee hours while lying under fluorescent lights that inevitably were left on out of habit when whomever did what they did to me left the room. Machines didn’t just take your vitals, they had to turn on with little musical announcements, beeps, and bells. The IV pumps would beep. Was it plugged in? Did one infusion or the other stop? With three pumps going it was a never ending cacophony of warning signals of one type or another. You know what they say, don’t go to the hospital to get a rest.

And the food sucked. I think the chef’s previous job was supervising the food that prisoners get on Riker’s Island. You know when the movie prisoner gets some kind of mold covered mystery shit patty that, even if not eaten, makes them vomit? Yeah, it was pretty bad.

For the first four days I was on clear liquids. A dietitian came to my room and said that she knew that just having clear liquids was a challenge, but “even then you do have the ability to make some choices to enhance your dining experience.” I was then told that in addition to clear chicken broth, I could also choose beef broth or vegetable broth. Jello choices were cherry and raspberry. When I was finally allowed solid foods, I contemplated asking for clear liquids again. The food was so bad that I didn’t even post a picture to Facebook with some sarcastic caption. It was that bad. It always smelled like feet, tasted worse, and nothing–absolutely nothing–was fresh.

Oh, and while in the hospital I caught a virus that took all but everything out of me. Every thing that came out my lungs or head was green and gross. Every two hours or so I retreated to the bathroom and spent 30 minutes doing what I called going green and tried to clear my lungs and sinuses in an attempt to breath normally for ten minutes. I begged for cough syrup, a culture, anything. If it didn’t have to do with kidneys or lungs no one seemed to give a shit and I never received anything to help me with the symptoms. And then I finally had a meltdown. I had it with the IVs, the round-the-clock blood draws, the endless noise from machines that take your blood pressure (no one knows how to take a manual BP anymore?), coughing up my lungs and suffocating from stuffed sinuses. When I talked I sounded like a frog. I wanted out for I felt worse than I did when I entered the place a full week before. But waiting for Coumadin to reach a therapeutic level increased my stay one day at a time. I was going to go home on Friday, then Saturday, then Sunday, then Monday, then Tuesday. Finally I was released on Monday evening and was spared another day. (As I write this, three weeks later, only now do I feel a spark of energy and am able to walk across the street to a park bench and keep down a meal.)

It all just goes to show how vulnerable I am now that I’m carrying around the cancer monkey on my back. I was not aware that blood clots are a concern with Stage IV cancer, so now I’m on Coumadin for the long haul. I drink constantly: water, lemonade, juice, milk. I even wake in the middle of the night for a glass of ginger ale to soothe my still sore throat and add to the hydration totals. Jello is my go-to for a snack. In the course of just a few weeks I had shed 28 pounds.

Until now it was all about pain from bone metastasis. But a step away from serious kidney damage and blood clots that could have fatally dislodged? Not to mention that Floyd not only hurts but bleeds and leaks to varying degrees from day to day. So in addition to facing a pretty precarious health crisis, I will say goodbye to aromatase inhibitors and anti-estrogens and begin oral chemotherapy in an attempt to target Floyd and (hopefully) kill the bastard.  I begin Xeloda on April 20. Until now, all of the medications that I have taken have been effective for six to eight months. My fingers are crossed that Xeloda remains effective much longer.

As I sat in the emergency department on the night that I was admitted to the hospital, my overwhelming fear was one of entering a phase of progressive deterioration. Was this the moment where my health would become ever compromised and I would start to divide my time between home and hospital? Was this the proverbial beginning of my end?

Thankfully, the answer seems to be no. My scans are excellent: no progression has been detected apart from Floyd, both sites that received radiation have responded well. There is still a lot of pain in my lower back and groin, but I take narcotics on schedule to address that. I can’t escape the fact my immune system is wonky, I am still easily fatigued, and I need to be aware of things that heretofore I never had to think about in order to attain and then maintain good overall health.

If you are living with metastatic breast cancer, then you know it’s a full time job. You need to learn about your disease and cancer writ large, master your medications, understand your treatments, and anticipate challenges. You need to become your own advocate and to the best of your ability keep the myriad appointments for scans, follow ups, and monthly treatments. There are moments of triumph, times when you lose your footing and slip backward, times when you are hopeful, and other times in which you just don’t care. But over time you realize that the fear you try to smother never really goes away; and I venture to think that this is probably varies from person to person. The fear, for me, is not one of inevitable death, for we all die. My fear is that of profound vulnerability.

My first exposure to being vulnerable came with the news that I had breast cancer. Intractable pain made me feel fragile. Finally acknowledging that I had to leave my career was, I thought, the worst vulnerability of all. The loneliness and isolation reveals yet another layer of fragility. Having to depend on people and feeling resentment from some that you need their assistance. But this experience taught me there are even deeper levels of vulnerability that leave one exposed and in real day-to-day danger. And I know that as time passes I will discover even more.

I never liked roller coasters. And I really hate the one on which I’m stuck until the ride is really and truly over.

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28 Responses to Two Kidneys, Two Clots, and a Tumor Called Floyd

  1. dglassme says:

    My fear as well Scorchy, is profound vulnerability.

  2. Roz Warren says:

    Glad you’re back home. I’m always at a loss for words after reading your posts, so I usually don’t comment but I’m one of the many people who feel honored to be a part of your audience, if audience is the right word for it. Fan base? Peeps? Internet Entourage? Scoarch-arians? Is there a word for us? And by the way, you’re one terrific writer. (And also, for your amusement, I’d be happy to send you a comp copy of my new librarian humor book. Just email your snail address to roswarren@gmail.com.)

  3. Beverly says:

    I found your blog last year after searching for info after my own breast cancer diagnosis and I find myself worried about you when you don’t post for awhile! I’m sorry things have been rough and am glad you are on the mend. You are a great source of information and inspiration for me. Thank you!!

    • Scorchy says:

      Hi Beverly. I can’t tell you how pissed I am on your behalf about your breast cancer diagnosis. It’s not what we wanted, but we’ve got one another’s backs. You inspire me. xoxo

  4. Hi Scorchy, I’m new to your blog. I stumbled onto your post in a round about way on Twitter. I just wanted to take a moment and say thank you for sharing your experience. I imagine it is difficult to write when you are sick and weary. I’m sure you bring comfort to others who are enduring similar experiences and you bring understanding to those who do not yet have first hand experience with the horrors of breast cancer. I hope the Xeloda brings you relief and I hope the chemo kills Floyd quickly. Best wishes, Justin

    • Scorchy says:

      Thanks so much for stopping by, Justin. I loved your note and your support is indeed welcome and appreciated. I wish you all good things! xoxo

  5. oh, my Dear Scorchy,
    though you have been to hell and back, it’s a good thing that you were plagued with that wonky ankle and the other ensuing mysterious signs and symptoms – definitely not fun, but good they prompted you that something (s) were amiss. but oh what a horrific ordeal you suffered! I am so happy you are home, and that much of what was so very out of whack is now stable. I am hoping that the burgeoning of Spring Time will be a big part of helping you feel stronger and provides a little buffering to such a wearisome chapter I so wish you did not have to endure. sending warm hugs, big hope for the Xeloda, and the death of that damned Floyd. xoxo, Karen

    • Scorchy says:

      HI Karen! I always miss you during a blogging hiatus. About two years ago a wonderful friend of mine collapsed at the subway station and was transported to the hospital just two blocks from where I live. She had a sore ankle for a few days and it really started to hurt so she wrapped it thinking she must have turned it and was oblivious. It turned out to be a blood clot. When my ankle bothered me for two days–but just a slight ache–I didn’t think much of it. But when it became torturous that Monday, all I could think of was my friend. I didn’t have a blood clot in my leg, so as a symptom the docs were a bit puzzled. But perhaps it was my body putting two and two together. I had some chest heaviness, but I chalked it up to asthma.

      I realized through this event that I drastically underplay anything physically amiss. Not a good habit to be sure. xoxoxoxo

  6. Ordeal: When the meals are too awful looking to put on Facebook. Good grief, honey. I’m glad that despite your terrible hospital experience, you came out of it in better health than you anticipated.

  7. It all sounds absolutely horrible. I am so sorry. Love and hugs.

  8. gspeers says:

    Dear Scorchy, thanks for this. You are just a bit ahead of me on the roller coaster. Although I did have Xeloda for about a year to attack my ‘Floyd’, I’m now back on Aromatese Inhibitors. One more option in that bag after this one before I kiss them goodbye. You articulate our experience so well. Esp the vulnerabilities. I had not thought of that in that way but you are right. When you get up the courage to ask for help and it is grudgingly given, it does make you feel a range of emotions, I had not thought of the vulnerability angle, but you nailed. Same with day to day. Giving yourself permission to only do what you feel up to do. (Paused for two hour nap)!. Also thank you for speaking of the achingly unrelenting groin pain… I thought I was the only one! Now I have proper pain meds and if taken on schedule I don’t feel it. Trouble is I think it masks other pain like my infected tooth which didn’t seem so bad… Oh boy. Yeah, what next, eh? Yes I’m Canadian. Good luck with xeloda. I found using Udderly Smooth cream on my hands and feet and wearing cotton gloves (and poss socks) made the hand symptoms manageable. Best, Gail

    • Scorchy says:

      HI Gail. I wonder what is up with the groin pain? When it first started I thought i just pulled a muscle after being sedentary for some months at the time. But it seems that it’s here to stay. I love Udderly Smooth cream, so I’ll pick up an additional tube this week. I addressed the many side effects with my doc, she apparently stops the drug and adjusts it in an effort to avoid side effects to some success. I hope so because if this hand/foot thing brings knitting to a halt there’s gonna be some loud profanities heard from NYC (well, louder than usual).

      Crossing that line into chemotherapy is scary,isn’t it? In my mind’s eye there is one of those colored indicators that starts out yellow and then ends in bright hot red. I feel like the arrow has moved into the early orange section. When things get orange and red they get real.

      Thanks so much for reading The Boob and I wish you the very best with this nect stint of AIs. xoxoxoxo

  9. The Accidental Amazon says:

    Well, dear one, at least the bloody snow is gone.

    What a miserable, interminable ordeal. I hope at least your local friends were able to sneak some palatable food in to you while you were incarcerated. Cripes. I don’t know enough swear words for this. Stage IV cancer is not what I’d call a great career option. But there it is. I hate these new layers of vulnerability you have discovered. But I’m thrilled that at least you’ve finally been able to walk, actually leave the house and cross the street. I hope the daffodils are blooming. I hope today is the beginning of a long and beautiful relationship with Xeloda. A spring romance, as it were. I hope Floyd is destroyed (oh, that rhymes!).

    Sending you love. And lots of kitteh snuggles. xoxo, Kathi

    • Scorchy says:

      At least the snow is gone, indeed. Just the smell of sweet air, flowers, and the intoxicating sound of bird song is healing. As for sneaking food in, two doughnuts and a to-die-for almond croissant made a couple of mornings very enjoyable. They were medicinal, of course. xoxo

  10. Knot Telling says:

    Sweetheart, I am so sorry for all this. I know lots of people have had long runs with Xeloda; I hope you do, too.
    I wish there were something practical I could do for you.
    Lots of love and gentle hugs.

  11. nancyspoint says:

    Oh, Scorchy, I’ve been following your Facebook posts regarding some of this stuff, but this post gives me a better picture about what you’ve been dealing with lately and I don’t like the picture much. I wish you could get off the dang roller coaster or at least have a calmer and smoother ride for a bit. Good luck on the Xeloda. Standing by from here to offer what support I can. Thank you for the update. xx

    • Scorchy says:

      Thanks, Nancy! Yeah, looking back on all of this I’ve been out of commission for quite awhile. Some of the dots that would eventually be connected appeared in November 2014. Would that we could have 20/20 vision all of the time, eh? Thanks so much for your love and support. xoxo

  12. Dear Scorchy, I’m sorry to hear what you’ve been through. But so glad that your scans showed no progression. I hope the Xeloda does the trick for a very long time… Not comparing, but with understanding, I had pneumonia for almost three months (started at Christmas) and it knocked me flat for almost two. I don’t fear death either, but the uncertainty does play tricks with our sense of self. Hanging onto the roller coaster with you. xoxo

    • Scorchy says:

      I had pneumonia in 2011. It knocked me for a loop. In fact, getting pneumonia freaked me out for months after. It affected me more psychologically than cancer. Sounds crazy, but there it us. Living with ambiguity is so difficult. We all do, but w/ cancer it’s right in front of your eyes all the time. This roller coaster sucks. As much as Indiana Jones hated snakes, I hate roller coasters. I hate ’em! xoxo

  13. Shit, shit, shit…..big love xxx I hope capecitabine does its job…I was on it for 2 and a half years…it kept my tumours stable xxx

  14. Well. Shit.

    I think of you often. Always good to see a post from you but I’m sorry you’ve had it so rough lately. Hopefully, along with the warmer weather, things will settle down for a while.

    • Scorchy says:

      Hello, my dear. I have never been so happy to welcome spring into my life. It has already made a profound difference. Thanks for always checking in. We’ve been acquainted to some time now–since the beginning of the blog I think! xoxo

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