That’s a picture of my cousin Michelle and I watching the Bachelor in true neutrapenic style. I mean the Bachelor is crazy already, but try watching it with a 103 degree fever! Yowza! You can give me stage IV cancer, but you can’t keep me from watching the Bachelor. It always makes me feel better about myself, because I mean hey….at least I’m not THAT girl. As a side note, I think the next Bachelor or Bachelorette should be held at the Betty Ford Clinic. Although then it may not be quite as fun to watch…..
So Monday night was my last night of freedom before being hooked up to all kinds of machines back at the Seidman Center! My fevers were getting worse, and my white counts were down to 0. Which as previously mentioned in my brief post, those white blood cells are highly underappreciated. Cause holy crap, when they’re gone, you suuuure can feel it!! I was sent to the hospital Tuesday morning, however there were no beds open at the Seidman Center. So the bright idea was to send me to the ER to wait for a bed to open up. Ummmm yaaaaa…..send a neutrapenic cancer patient with a white count of 0 to the ER filled with people who have the flu…so many people in fact that they were sitting on the floors of the hallways, and starting Ivs in the lobby. I think you can see where I’m headed here….after 4 hours of waiting, guess who got the flu? THIS GIRL. When you have no white blood cells and you can’t fight anything off, just the plain old flu really wipes you off you’re feet. I can honestly stay that I’ve NEVER in my life felt as sick as I do now. (well not right now exactly because I’m all hopped up on some really good drugs. Don’t be jealous).
Once I was here, I was visited by my oncologist, who came with some pretty surprising news. The pathologist has “amended” my diagnosis. Apparently the type of cancer I have is called (prepare yourself, this is a long one..), Nodular Lymphocytic Predominant Hodgkin’s Lymphoma. The weird part is that there is a strong genetic link between direct siblings and this type of cancer (which is now causing my team of oncologists to look back at my sister’s records to see if that’s really what she had too), and that none of my symptoms are consistent with a diagnosis of this type of cancer. The cool part? This is an even RARER form of cancer that is a little harder to treat. Derek has banned me from Google, but some of my friends texted me and told me that the cure rate, even in later stages is still pretty high. I’m going to blindly believe any good news, because that’s what I do. So how does my treatment change? Not too much actually, other than the addition of a new drug to all my other ones, called Rituximab. (Rituximab (trade names Rituxan and MabThera) is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of B cells. Rituximab destroys B cells, and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and some autoimmune disorders.)
My oncologist explained to me that Rituximab is very strong, and 95% of all people who take it the first time experience some sort of allergic reaction. So that’s something fun to look forward too! The plan was to administer a small portion of the (I’m just going to call is “R” because it’s too long to keep typing out) R on Thursday, the day before my scheduled chemo to monitor the side effects, and to come up with a drug plan to treat whatever allergic reaction I may have. The rest of the R was to be given to me on Friday along with the rest of my chemo. As you can see, it’s Friday, and I’m posting on my blog (not only is today the first day I haven’t been too weak to even type on a computer), but they postponed the R on Thursday because of my flu, and have decided to postpone the rest of my chemo (including R) until MONDAY. Arrrgghhhhh. So I’m just going to sit here all weekend, sequestered to my room on the 4th floor of Seidman. SUCK.
The worst things about being stuck here are as follows: A) the 4th floor staff, with the exception of one nurse named Emily, and another one that I can’t remember her name…are so sub-par compared to the 3rd floor staff I had last time I was here. For example, on Wednesday night, I was having trouble breathing. My chest was hurting and I was coughing every time I would breath through my mouth, and I couldn’t breathe through my nose AT ALL. I had a fever of 104, and was absolutely miserable. I called the nurse button, and a half hour later my nurse arrived. Her solution to my problem was to put me on oxygen using the tubes that go up your nose……um can’t breathe remember?!!! That made my chest hurt even worse, and it was like she didn’t believe me. So I just ripped it off. I asked for some sort of nasal spray or breathing treatment…and then she got a call on her iphone. She answered it, left without saying a word to me, and I didn’t see her for an hour. Thank God Derek stayed the night that night. He took pretty good care of me, changing my ice packs, keeping me cool, trying to help me breathe etc. Needless to say I complained about her, and will not be having her anymore. That being said, I have been visited by 2 of my nurses from the 3rd floor who were just concerned about me and wanted to pop by!!! Noticeable difference? I think so. B) I miss my little guy. I only got a brief week at home between hospital stays, and I just miss the pants off of him. The good news is that he would prefer Mickey Mouse Club House over mommy any day right now (which is a good thing), but I never actually thought I’d be jealous of a cartoon. Oy.
Crappy cancer-related items:
1) I’m still getting fevers. No one is able to tell if they are from my cancer, from the flu, or from an infection, but they are daily, they get pretty high (and not in a good way), and they make me feel like SHIT.
2) I’ve developed anticipatory nausea. That’s where whenever I see a pill or an IV bag of meds come my way, I immediately get nauseous. Its awful.
3) My skin is soooo dry. Partly due to the hospital air and partly due to washing my hands 20 times a day, but my skin is literally starting to flake off. Its disgusting.
4) I have to wear a medical mask ALL the time until my counts come back up. Do you know how hard it is to breathe in those things? Ya they’re hell on your face.
OK now for the good things, because I always have to find at least one:
1) I like my doctors this go round. Dr. Koon is the head of my oncology team here. He has a lazy eye and I never know which one to look at, and also makes me hope that he’s not a surgeon. But he’s pretty funny, and he likes when I swear, so I really unload when he stops by. He usually leaves in stitches, and I get a kick out of that. I also like his peon, Dr. Sullivan who looks to be around my age. Today I was watching back to back episodes of Boy meets world, and I caught him stopping mid physical exam to watch some of it! I bet he closetly loves Saved By The Bell too. Who wouldn’t?
2) My hair is falling out more. I actually consider this a good thing because I’ve been getting hot flashes, and I’m ready to buzz it off. That’s the plan for when I bust outta this joint.
3) Derek is not here to hog the remote, so boring as TV is right now, really, at least I can watch whatever I want without a fight!
4) I pooped today. Ya maybe that’s TMI but it was glorious to me. Also made my spleen feel smaller, and we all know a small spleen is a sexy spleen. Small miracles.
Until next time!