Sometimes, when you have chronic illnesses, it is possible to escape your reality, just for a little while. Sometimes the stars align just enough for you to try something new, live fully, and lose yourself in an experience. In these moments, maybe even these days if you're really lucky, you forget about your illnesses for so long that you can almost believe they're gone.
This weekend, my husband and I went on a brief trip to Brooklyn. We stayed at a trendy hotel in Williamsburg, saw friends in and around the city, ate good food, enjoyed each other's company, and celebrated his birthday. Although certain aspects of my illnesses were present with me throughout the trip (like getting low blood sugar walking around in the heat Friday afternoon, or having to take pain pills each night because the unfamiliar bed hurt my pancreas), I almost felt normal. Even though we talked openly about my cancer and its harsh and boring realities with our friends, I also felt a little bit like my old self, my self before cancer. I could do things, I was capable and game, I was able to stay out late and have a really great time. These are not small accomplishments when you're living with three serious chronic illnesses. And this respite came just in time, because tomorrow, on my husband's birthday, I am going into the hospital for a procedure that will probably lay me out for a week. Because of the chemo, my platelet count is persistently low, and is currently too low for me to continue my treatment. Also because of the chemo, my spleen is slightly enlarged, and apparently retaining the platelets I need to rebuild my blood count after chemo infusions. As I understand it, the bone marrow produces new blood, and the spleen and liver are stops along that blood's journey throughout your circulatory system. If the spleen gets irritated or inflamed, as mine is, then the new blood can't progress through it correctly. However, some doctors have discovered that certain spleen treatments that patients need in other cases happen to cause a dramatic increase in platelet count. So, this side effect for others is the intended result for me. This means the procedure I'm having isn't standard practice for cases like mine, but is rather a creative and alternative treatment my doctor can offer because he thinks outside the box of standard pancreatic cancer treatment. It's not a dangerous or experimental procedure, it's just not usually used for cases like mine. It's called a splenic artery embolization. An interventional radiologist will go through the artery in my wrist with a catheter (I presume), snake his way to my spleen, and purposefully block the artery's path into part of my spleen. He's using some kind of a compound that's usually used for brain vascular procedures, which will expand and fill this branch of my splenic artery. Over the next several days, then, about half of my spleen will die from lack of blood supply. This will reduce the overall inflammation and make the spleen release the platelets it's retaining. This has proven so far to be a fairly durable procedure, with stable platelet counts lasting at least a couple years. However, at Johns Hopkins, they've only done this procedure in cases like mine for 12 other people, and none of them have been diabetic. There's a risk of infection after the procedure, either from the procedure itself or from the dying spleen tissue. For me, this risk is increased because being diabetic (especially insulin-dependent) increases your general risk of infection. And then once I start back on chemotherapy, my risk will increase again because chemo depletes your white blood cells (which fight infection). But there's no way to know how great my risk will be. And it appears there's no way for me to continue on any chemotherapy treatment if we can't get my platelets high enough for a sustained period of time. So, in order to go back on the debilitating treatment that's slowly saving my life, I have to admit myself to the hospital so I can have half of my spleen killed. And then I'll stay overnight in the hospital on a Dilaudid PCA (patient-controlled analgesia) pump, and go home with some kind of narcotic pills to get me through the pain of waiting for half of my spleen to die. This is supposed to take two to seven days. I've given myself seven days off work, and virtually nothing to do but sleep and read during that time (if I'm not too drugged to read). I have friends and family scheduled to visit throughout the week, which will be lovely. I have some soft and gentle food to eat, like chicken stock, apple juice, boxed organic soups, and crackers. I have three much-anticipated books I just checked out from the library, and a couple episodes of The Great British Baking Show saved up. To be honest, I'm pretty excited about the Dilaudid pump. The last time I had a PCA was when I was nine years old, in Children's Hospital in DC for the acute pancreatitis that eventually turned into recurrent, then chronic pancreatitis, which later led to my diabetes and now my pancreatic cancer. The pump then was morphine, until I had so much of it I could no longer tolerate the severe itching it caused (now I'm morphine-intolerant). Dilaudid, as many with illnesses or injuries know, is the most wonderful of all prescribed drugs, not only because it does give you a lovely high, but more importantly, because it works incredibly well to knock out pain. The low-dose Oxycodone I've been taking for pancreas pain off and on for months now is not nearly as effective. So even though I'm anticipating brand-new severe abdominal pain from my poor dying spleen, I'm relieved to know that I'll be getting enough of the good stuff to wipe the pain away. So I'm prepared, and I don't think it will be terrible overall. But really, this whole situation is ridiculous. I'm intentionally killing half of one of my organs, just so I can keep sucking in more poison. This is the life of the cancer patient.
3 Comments
Andrew
8/2/2016 08:05:24 pm
You can ask for the dilaudid 'to go' also. It comes in a pill!
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Carly Bastiansen
8/4/2016 10:09:57 am
Yes, that's what they gave me! It's definitely better for me than Oxycodone.
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Ashley M Scurto
8/7/2016 11:17:04 am
You are so brave and positive! I have always admired these things about you. Lately, I have had to begin to replace negative thoughts with constructive positive ones in order to keep things moving. We must stay on the right team I suppose! Friends and family help us to see different perspectives and not ruminate on the scariest parts of our journey.
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Authorchildren's librarian, Smithie, writer, reader, cook, gardener, cancer patient, medical oddity, PANCAN patient advocate, #chemosurvivor, #spoonie Categories
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