My apologies for the delayed post. The day following my brief excursion to Starbucks, I have never felt so sick in all of my life. It hurt even to blink. I couldn’t sit up in the bed without feeling like I was going to faint, until about 2:00pm. I had a fever of 104.5, that I just couldn’t break. (These fevers by the way happen usually only at night; around the same time, and have been determined to be a symptom of my disease, rather than an infection or virus. I experienced the same symptomology last year when I was first diagnosed. It’s pretty weird because it’s literally on like a timer or something…I just look at the clock and know within the hour I’ll be getting a fever and feeling like crap. So many perks of cancer!!!)
Anyway, the day I was feeling like all-out garbage, was the day I was visited by my amazeballs son Mack and husband Derek. Seeing them made me feel so much better, and even though I couldn’t hold him, or play with him like he wanted, I tried to muster as much strength as I could to hide how I was feeling. You can tell it scares both of them not to see me in “mom mode”. We had an amazing visit, and of course the minute they left, I balled my eyes out. I try not to think about it–about this happening again–about missing Christmas. About missing Mack’s 3rd birthday. Missing his first day of parent/toddler pre-school. All of these firsts, that I’ll never get back because we can’t have any more children…I try not to think about it, because in the grand scheme of things, I would much rather just NOT DIE, …but I couldn’t help it. Other than their visit it was just a bad day for me. I hate feeling sorry for myself. I hate other people feeling sorry for me, because I wish I didn’t have a reason for people to feel sorry for me. I felt bad because my team of doctors and my nurses aren’t used to seeing me down-in-the-dumps; too sick to get out of bed; frustrated; et al. I could tell they were caught off guard, and didn’t really know what to do or say. But damn if they didn’t try to cheer me up. Kudos to you, Siedman 3. For what it’s worth here is my little soap box comment to doctors and nurses: When you are a patient, especially a cancer patient, your whole life turns upside down. You almost no longer feel human. Instead, you feel like an actual giant piece of poop. Sometimes it would be nice if you would just “shoot the shit” with us. Talk to us about Ellen, or the weather, or something stupid your spouse did. You know what that does? THAT makes us human again.
Anyway, like in most cancers, you have your good days, and your bad ones. The next day was a good day, although I received the news that the biopsy of the nodes from my neck were normal. Most people would be happy about that, however, it irritated the hell out of me. Three reasons: 1) Clearly I have cancer and need to start treatment, now am delayed yet again 2) I just had my second unnecessary biopsy and nice 3.5 inch scar across the center of my neck and 3) They probably just took out the only remaining GOOD lymph nodes I had left. lol. Have to laugh at that one. That’s actually kind of funny, in a really sick and twisted way. And so it came down from above that Dr. C. wanted to remove my spleen entirely for the biopsy. This is the primary location for most of my cancer, and seems to be where it keeps originating, so although it’s risky to remove an organ (even one you can live without) when you have no white blood cells to help heal you, this really seems like the best option.
NOTE: I woke up to a kick-ass sign from my nurses, see pic below.
After waiting in NPO status (no food or drink from midnight until approx. 2pm the next day), the surgical resident came down and explained that they could not perform my splenectomy. It simply was too big for a laproscopic procedure (that’s when they make small holes in your belly and basically try to pull the spleen through one of them by stretching them…kind of like when you’re having a baby), so I would be rescheduled for Tuesday the 17th. Dr. Kim, who is the surgery chief will be performing my surgery. He came in to meet me, along with my oncologist, and infectious disease doctor, (I was super happy everyone got on the same page. It seems INCREDIBLY HARD for the slew of docs I see on a daily basis to get together and talk to one another. I find myself constantly telling one what the other said. Luckily I have a bit of medical background from my job, but I feel bad for other people). Anyway, I really liked Dr. Kim. He didn’t talk to me like I was an idiot, and explained everything he would do in enough detail, that I had no questions (which was a first). He told me that I had a “famous spleen”, in that many doctors have been talking about the size of my spleen. I mean Kim Kardashian has a pretty famous ass, but she’s got nothing on me. Apparently my spleen is about 17-18 cm in diameter, and normal size is between 12-13 cm in diameter. It’s not the biggest spleen the doctor had ever seen, as he told me, but inside me, because I Have a pretty small frame, it’s pretty huge. I think he was pretty impressed when he squeezed it on exam. I’m just saying.
So since they have treated my infection earlier this week, I have to wait until Tuesday for my surgery, and I’m not currently undergoing any treatment, they allowed me to go home for the weekend. I am currently typing this from the comforts of my kitchen table with my son making a giant mess around me, which I could care less about. Even though it’s amazing being home, I don’t think I’m going to be able to come home for Christmas now. They are going to start chemo as soon as they can, following my spleenectomy, and the chemo is inpatient. I’ll be having R-ICE. I haven’t looked too much up about that yet. One step at a time. My brain can only take on so much worry at once, after all. I’m hoping that I can get at least a day pass on Christmas Day, like I had last year, for a few hours, but I’m not sure. The risk of infection for me is pretty great. We’ll see. I’m not going to get my hopes up. But we are not celebrating Christmas this weekend, just in case I am able to come home. Like I said before, the most important thing is that I DONT DIE. I’m not going to pout like a baby about the rest. Suck it up, buttercup.
When I came home, the house was spotless, and all the laundry done. Once again, mad props to my amazing husband, who takes the best care of me, and of our home. I am so incredibly lucky. Mack asked me today if I was all done being sick now. I told him no, I still have to see the doctors for quite some time. I told him that I would lose my hair again, “just like daddy!”, and he laughed. Then he said something that shocked me: “Mommy you not sick, just your blood is sick!!”. It’s scary how much he knows and can say for just turning 3. And you know what? He’s right. I’m not sick. Just my blood is. Just have to fix that part, then I’ll be golden. What he said to me reminds me of when I was first diagnosed, and a lymphoma survivor gave me a single piece of advice; that of which I’ve shared with many others, and have repeated in my head daily (aside from my momentary lapse of freak out upon relapse, of course). And that is: “Pick yourself up. Get your shit together. You are NOT going to die.” There is always someone who is having a worse day than you, and I don’t just mean the people at Walmart. 🙂
I probably won’t be able to update the blog for a while, as I will be feeling pretty lousy post spleen removal. Thank you all for the well wishes, and If you could just remember me in your prayers, I would really appreciate it. Also if you could please continue to pray for my friends Kris and Marty, that would be great too.
Additionally, and I hate to solicit any more, but I randomly came across this website on Facebook, and I just really wanted to share. This person, well, I just am so so sorry. That’s all I can say. Please read and consider donating.
Joe Crumley and Family
I’m banking on the fact that my spleen weighs at least 12 lbs.