Since my last post, I have switched rooms, been visited by about 20 doctors, have had a variety of blood tests and scans, and had a biopsy. In my free time I wrote a novel and knit a sweater. Just kidding.
To start, I’m back on the third floor of Seidman–my fave floor–with the greatest staff ever. Most of the staff is the same from last year when I was here (along with the various other times throughout the year I was inpatient), so they know me, and I feel comfortable with them. It’s especially nice if I don’t have visitors, because I never feel lonely. So if anyone high up the chain from UH is reading this, this floor should be recognized for their kindness, attentiveness, and straight up awesomeness!!! Oh and Dar is the best NA. (there’s your personal shout-out biotch). Also to Rebecca N, my outpatient nurse: I love you. You really are wonderful at your job, and if I can’t have my mom here with me, then I’m glad you are.
I had my biopsy yesterday. There were a few lymph nodes in my neck that lit up on my PET scan, so they literally slit my throat (see pic), and took them out. Unfortunately however, similar to my bone marrow results, they told my husband and I that they looked pretty normal. Obviously I don’t WANT to have cancer, so having normal cells is great, but its pretty clear that my cancer has returned with a vengeance, and I can’t start any kind of treatment until I have a pathology report/good biopsy, showing the exact kind of cancer I have. When I went into the ER last week, my blood culture came back positive for an infection somewhere in my bloodstream. This has since been treated with antibiotics, but there is a likely chance that the reason those nodes in my neck lit up on the PET, was due to the infection and not the cancer. So that makes TWO pointless biopsies now, and the frustration is mounting…
Dr. C., my oncologist is back in town. She was actually at a conference where they were discussing NLPHL (my cancer type) for a full half hour!!!!! …Which trust me, is like a TON of time since this is a pretty rare form of Hodgkin’s Disease. Anyway, she discussed future plans with me, to some extent. If we are unable to get a good path report from my neck, then the likely next step will be removing my spleen. It’s risky–high risk of infection due to my low white counts–but its pretty clear there is cancer there, and is where the cancer first presented itself the first time I was diagnosed. It will also be harder to recover from, which means I may not be able to go home in between chemo and the stem cell transplant. She is going to talk to some other doctors first to see what they think, so again, I’m just walking blind here. Luckily I really trust her and the rest of the team, and feel confident that they will make the best decision for me. BUT…that being said….GET THAT M-EFFER OUT. I HATE MY SPLEEN.
I’ve had some amazing visitors recently. Some people whom I’ve never met, and some friends I’ve known for years. Thank you all for your generosity and your support. Seriously, I say it a lot, but I really do mean it. I feel so incredibly lucky. I don’t know how to thank you all. My workplace has been great too. Thank you for letting me keep my job, even though I’m now going on my second year of barely-there work I promise to get better soon and work my ass off!!!
Something kind of funny happened this morning. I just got out of the shower, and I looked down and there was blood everywhere! My IV just completely fell out! right there…on the floor. Just came right on out like a cork. Boop! Just like that! I I called the nurse, and she was a little concerned at the amount of blood. I had to laugh a little because her face was priceless. Funny things like that seem to happen to me a lot. Silly! In other news my cool nurse helped to bust me out of here today, and allowed me to walk across the street to starbucks to get a Chai tea latte with soy milk (my fave). It was AWESOME to get a little fresh air! I didn’t even care that it was 22 degrees. It felt amazeballs. Not to mention when I went across the street, I felt totally normal. They had no idea I was a cancer patient, so I’m going to keep milking that for as long as I possibly can.
I haven’t talked to Mack too much, and have only seen him in person once since I’ve been here. It’s hard because he gets scared to see me hooked up to an IV or sick, and I hate to see him that way. We try to face time, but he doesn’t really get it. He tries to kiss me, and asks me to hold him, and it breaks my heart. BUT I just keep telling myself that I can totally do this for three months or so, if it means I can see him grow up. Just suck it up, Buell!
My family has really been through the ringer over the past few years. Not only have my parents had to deal with both of their children having cancer on more than one occassion, but my poor husband had to watch his father pass away from lymphoma, and now watch his wife go through the same thing. Same goes for my mother-in-law who had to take care of him until his passing. They are all so amazing, and deserve some time to de-stress. I had mentioned this on facebook before, but if anyone has any connections with the Ellen show, I would love for my family to be able to see her show. They all love her, and I can’t think of a better way for them to de-stress, then to get away from this hospital for a while, relax, and see their favorite show live! It would make me happy to know that they can all still have a little fun. Obvie my Christmas is ruined, and I know they no longer feel like celebrating either. …But they should!
1) getting my spleen removed will make my stomach flatter, so I don’t have to spend money on a tummy tuck.
2) Starbucks today
3) The nurses on this floor love the Walking Dead, and have “Walking Dead” parties watching the show in the common room. Love.
4) Fresh air
5) Amazingly generous gifts for my son from very awesome people. I CANT WAIT to see him open all of this. He is going to FWEAK OUT!!!
6) Extreme kindness from strangers
7) Someone pours water for me when I’m thirsty. No one does that at home!
8) My room is right next to the Marriott hotel, which allows for some excellent (or non-excellent depending on the moment) people watching.
1) This hotel doesn’t have a hair dryer.
2) I’m still here.
3) I still have cancer.
Whelp looks like the amount of PROS outweighs the CONS this go-round, so that’s a good thing. Today, someone asked me how I stay so strong. My response? I don’t. I break down ALL. THE. TIME. I have these moments of panic where I have to talk to my doctor, just to have her tell me that 1) yes this type of relapse has happened to other patients before and 2) yes, they totally pulled through following treatment. The truth is that I’m terrified all the time. But for me, laughter is always the best medicine. If I can get my all-too-serious doctors to laugh, or make a sarcastic comment or nine, then this whole cancer thing doesn’t seem quite so real to me. The whole mood is lighter, and it feels like a weight is lifted. How can you LIVE after all, without a smile every now and again?
Just keep swimming.