I'm a Lymphomaniac

I’m a lymphomaniac. I keep getting lymphoma over and over again. I just can’t stay away from it.

Maybe I’m a little bit of a masochist. I like pain and punishment. I always said I was not a masochist. I did not like pain, and this is why I am NOT a Red Sox fan.

We do have a bet on, however, and the odds are serious! If the infamous Dana Farber Hospital can cure my lymphomaniac ways, then I’ll convert to a Red Sox fan for the rest of my long healthy life. I’ll proudly wear my pink red sox hat emblazed with Dana Farber Cancer Institute on the side.

Here it is for everybody to hear. These are the odds. If I get cured I’ll ditch my Yankee loving ways and become a Red Sox fan.

My husband may kick me out, so this is serious, but Xander will be happy his mom has finally made it to the “good side.”

Craziness

The Transplant Process

I’m hearing that there is some confusion regarding the transplant process. Let me clear the air.
I am currently receiving chemotherapy. This is not because I currently have cancer. I am in remission. Being in remission prior to transplant presents the most optimal state to achieve a cure.
The chemotherapy is being used solely to give my malfunctioning immune system a beat down. My immune system is misbehaving, and it needs to be punished. It needs to be removed and replaced with a healthy donor system that does not possess the glitch that causes my cells to proliferate and create tumors.
You can compare the process to having a problem with your computer. Let’s say your old software (immune system) has a virus that is causing the hard drive to malfunction (causing cancer). You take the computer to be fixed. The hard drive needs to be wiped out, thereby removing the problem virus, and new software needs to be installed to keep the machine running smoothly.
Is this too much of a geeky explanation? Because the chemotherapy is starting to get to my head and I’m feeling a little foggy.
Either way, the process is going according to plan. I was admitted on Friday Oct. 3 to have a Hickman line placed. This line is implanted in my chest and goes directly to my heart. The chemo is infused through lumens (chords) outside my body, like a gigantic IV in my chest.
On Sat. I began a regime of Fludarabine and busulfan (chemo) by infusion. I was also supplemented with potassium and magnesium to keep my electrolytes stable. I received aloxi to prevent nausea.
The goal of the chemotherapy is to gently remove my existing immune system without causing dangerous toxic side effects. The chemotherapy kills rapidly dividing cells. This is what causes hair loss, mouth sores, etc.
This is also how my cancer will be killed, and without the existence of obvious cancer in my system, it is more likely the chemo will kill each and every malfunctioning cell that is causing my cancer to return. All it really takes to cause cancer is one renegade cell reeking havoc.
I believe Dr. Farber, as in Dana Farber, the hospital where I’m being treated, devised this theory and the subsequent basis for my treatments.
This is where I am at today in my process. I have, about seven days left with my hair. In response, I’ll be giving up shampoo and combs. I’ve never been a huge fan of hair. I’m a fan of electrolysis. I’m a fan of hats and scarves.
I’ll receive chemotherapy until Oct. 7 (a total of 4 days), on the 8th I will have a day of “rest,” and on the 9th the stem cells from my donor will be infused. This is referred to as Day 0.
I am having a “nonmyeloablative transplant” or “mini transplant,” meaning some of my immune system will remain intact.
After the donor’s cells are infused the process of integrating the new system into my body begins. Here is the part that confuses and scares me.
I will experience some level of graft vs. host disease. GVHD is the donor’s immune system taking over my own and not recognizing my body. The donor’s immune system will try to attack my organs, and I will receive medications to prevent this from happening. The stem cells will take over mine slowly, and begin to recognize that my organs are not the enemy. They will begin to recognize my body as its own.
The process sounds a little bit like an art and a little bit like science. I’ll be receiving a study drug called velcade to help facilitate the process. I will also be receiving methotrexate.
Life is a fragile state. I’m going to test just how fragile it is.
This is how I understand the process. I hope I’ve explained it in understandable terms. If I have not, contact me. I want everybody to understand the truth of what happens.

What do you call a person who has a compulsion to get lymphoma over and over again?
A lymphomaniac!
(and you thought I was going to say me) For more cancer jokes, check out cancerisland.com

Hospital Clothes

My Room

I’m happy to hear people are beginning to understand my blog. I’d love feedback on how user-friendly this is. I’ve posted answers to some frequently asked questions to the right in the sidebar. I hope my blog is easier to figure out than I am or you’re going to be sitting here a while.
I always thought I was pretty simple and straight-forward as far as a woman goes. I certainly have my moments, but generally I know what I want and I’ll ask for it. I wish life could be the same.
I had a bit of a rough night last night. I couldn’t sleep. I’m still becoming accustomed to the line in my chest and the pain accompanying it. Then my blood pressure dropped to 70/50 (normal is 120/80), and the nurse became concerned.
I told her there was no need to be concerned. This is what happens at night. I sat up for her. I walked around the room. I did not feel like I was going to pass out. I wasn’t sweating. This is how my body behaves.
I am concerned, however, that I’m referred to as “the girl in room 56” or the “BMT down the hall.” I want to be seen as a human being with a life outside of my cancer. I understand the need for professional boundaries in a nurse patient relationship. I’m not looking for a new set of best friends while I’m an in-patient, but these people are the crux of my social interaction. I am looking for some evidence that I’m seen as human and not just a disease. In all the time I’ve spent in hospitals, I’ve never experienced this level of detachment between my caregivers and I.
With all due respect, it’s also, only, my third day here, and my day nurse is fabulous. She treats me relatively effortlessly. She gives me the schedule for the day each morning when she brings in my “cocktail” of Vit. E, folic acid, metopropolol, lexapro, multivitamin, acyclovir, and whatever else I’m getting.
She hangs the calcium I’m getting today, and the magnesium and potassium I’ll be getting daily for the remainder of my stay.
I haven’t really been paying attention to what I’m taking. I know, that is not me, not the Hillary most people know, but I’ve finally humbled myself. I don’t need to know. Sometimes, I wonder if I know too much.
Maybe the detachment is only my imagination because everybody who enters the room looks like a masked bandit. I do get to focus on the eyes of my caregivers, and I suppose that’s all I need. Maybe I’m projecting my own feelings of detachment and isolation.
Either way, I’m coming to terms with my surroundings and the roller coaster that is my life. I’m thinking of ways I can enjoy myself. I’m getting creative. I’m going back to the basics. There are not many things you can do within a small box of a room.
I’m going to turn on music videos and try to do the moves like I did when I was ten, and when I realize I can’t, I’m just going to jump around. I’m going to have movie marathons with my sister and laugh until I cry. I’ll play with my video camera and make silly videos for you to see, and if I don’t have the energy, I’ll take my camera so you can view my world, however small, through my eyes.
This will be okay.

I Want Out of My Life

I want out of my life. I’m going to trade it in for a better model. This was not how it was supposed to go. Somebody, somewhere, must have made a big mistake.
I’m trying to be cool. I’m trying to remain calm, but if that damn alarm goes off one more time, I think I may hurl it out the window.
I’m not permitted to program the pumps. It’s not my license. I don’t have a license anymore. I have not worked in over two years. I have to push silence and call the nurse. I’m a professional cancer patient, not a nurse.
I have a nurse in her twenties. She’s the one with the license, with the job, and her whole future ahead of her.
I’ve never been jealous before. I have always had what I wanted, and if I didn’t have it, I knew I could get it. Now, I have to watch everybody else live, lives I may have had.
I won’t be working as a nurse for over three years by the time I heal. Everything I worked so hard for will be gone. All the knowledge I attained.
I’ve never spent more than three years attempting to accomplish anything. I graduated from high school in three years. I graduated from college in three years. I have a short attention span. I always have a plan for something more. Now everything is on pause.
This wasn’t what I saw when I talked about what I would be doing when I grew up. This wasn’t how I envisioned my twenties.
I call a “redo.” I’m questioning my life. I’m questioning all the decisions I’ve made.
I don’t even know what I want out of life. I have never been in this place before. I’ve always known exactly what I wanted. I knew exactly where I was going. I have never had trouble accomplishing anything I put my mind to.
Now I’m on lock in an 18’x15’ room, and no matter how hard I try, I can’t send my disease into remission with my mind. I can’t make my life disappear. I can’t change my situation.
I don’t feel blessed today. I feel screwed. I feel lost.
I try to stay positive, but underneath the surface, I’m scared I’ll lose everything. I’m scared I’ll lose my functionality, a fate worse than death. I try not to think about the possibilities of lung or kidney failure. I try not to think about any possibility that will keep me dependent and tied to a machine.
I still wonder where I will draw the line. I wonder how far my treatment can go before I call “uncle” and head home.
I hope I never have to make this choice. I’ve always been an all or nothing type of girl. If I’m going to do something, I’m going to do it right, go head first, and full throttle.
Everybody keeps telling me I don’t have to make any decisions now. I don’t have to think about this, and they’re right. I’m going to sleep this feeling off. I’m going to let time tell.

Intro to Heather

My New Friend