Tuesday, March 30, 2010
Stem Cell Collection
Sunday, March 28, 2010
Entering the Unknown ... Again
Saturday, March 27, 2010
Clichés
Thursday, March 25, 2010
In the Business of Making Stem Cells
Good news is that I no longer need the third round of ICE chemotherapy that we had originally been planning for. Because my "b" symptoms have subsided, there are no palpable lymph nodes, and I've bounced back well from the first two rounds it was decided between Dr. Dailey and my new oncologist down at Yale, Dr. Cooper, that we should go ahead into the stem cell transplant. It was explained to me that there is a delicate balance between giving not enough and giving too much chemo. Since I received the extra chemo administered in the pediatric regimen, I've gotten nearly as much as an adult would in three cycles. This should have effectively put me in remission. They don't want to give me too much more of this chemo at the risk of wiping out my bone marrow's capability to produce new cells. This makes me ecstatic as it means that I may never have to be an inpatient again!
On Monday I need to be at Yale New Haven Hospital's Smilow Cancer Center at 7:15 a.m. for what is hopefully my first day of stem cell collection, pending my cell amounts are high enough. The next order of business will be to asses my veins and see if they are viable enough to use for the collection procedure. Otherwise, I'll have to have another type of catheter inserted in my chest, which they will do with local anesthesia that morning. Then I will be hooked up to the apheresis machine which will pull out my blood, snatch out the stem cells, and put the filtered blood back in. I'll come back and do this for however many days it takes until they have enough for them to store and freeze for later use. After that comes the scary, high-dose chemo and then the re-transplant of those stem cells I collected pre-chemo. These cells will help to rebuild my bone marrow and immune system which the chemo will have wiped out completely. To be blunt, without the stem cell rescue, the chemo would kill me.
Over the last several days I've had myriad of emotions starting from total fear and dread to where I am now, which is again focused on getting myself strong and ready to kick ass. I've had much blood work done to be sent down to Yale and have had to fill out lots of paperwork and read over consent forms, the most disheartening being the "Consent to Receive High-Dose Therapy with Stem Cell Rescue for the Treatment of Hodgkin's Disease." This document is a doozy and what sent me into a mild anxiety attack on Sunday. Basically, it's full disclosure of all the possible side effects that could occur, it gives some harsh statistics and numbers, and talks about the risk factors, which include leaving me susceptible to future cancers like untreatable leukemias.
But I have a lot going for me and I like to think that I'm not the "typical" patient. Overall, I did really well with the ICE chemotherapy and Dr. Dailey tells me that many of his patients who go through the stem cell transplant procedure find the ICE to be more difficult than the BEAM chemotherapy that I have to come. I'm hoping that this is the case for me. I am strong. I have been walking every day but the 3 dead-to-the-world post-chemo days, have been working out with exercise bands and doing yoga at home as I'm not allowed around the germs a studio would contain. I've been eating well - lots of organic and whole foods, and my blood cells have also made a good showing with time. Right now, my white blood cells are again so low that I'm neutropenic and am again on prophylactic antibiotics, but that's to be expected, and I'm 1 point higher than what I dropped to after the first ICE round. Tomorrow I'll find out if I need a blood transfusion to get me up to the required levels before I can go through with Monday's procedure.
To balance out the medical jargon, I've found it most helpful to talk with real people that have gone through this. It's helpful to hear that there's a light at the end of the tunnel and that the whole process really isn't that bad. Today I spoke to Ethan Zohn, the winner of "Survivor Africa." He's in his thirties and went through chemo for Hodgkin's Lymphoma, relapsed quickly, and was back in for ICE chemo followed by a stem cell transplant. I've been following his path all along as he was diagnosed in 2009 just a couple months ahead of me. I was connected with him through my friend Jack at the I'm Too Young for This! Cancer Foundation.
Talking with Ethan certainly helped to quell a lot of my fears and helped to reinforce my beliefs in a lot of mechanisms that I've been using to get through everything I've been through so far. He is also a big advocate of exercise, yoga, visualizations, meditating, and diet and gave me a lot of tips for how turning to them helped him get through his transplant. He told me how there were days that he wasn't able to eat hardly anything because of the nausea but that he would force himself to at least drink a shake or a smoothie to get something in and also was devout about downing lots of fluids. He also told me how important it was for him to get up and move/exercise every day even while in isolation. Some days that meant just getting the motivation to get to the shower, but when he was feeling a little stronger he had exercise bands and weights that he brought with him, would do yoga stretches, etc. and swears that this made such a difference for him. I'll be packing them in my bag as well.
He told me that he wouldn't kid me, that it's not going to be easy, but that it's manageable and you get through it. He told me not to be shy, not to try to be a hero, and to ask for what I need when I need it. He told me that I have science on my side and assured me that within 30 days he was back at the gym and walking outside and that he's feeling stronger and that he's there at any time if I have any questions. This is what I'm talking about when I'm talking about being part of this great cancer community.
- His stem cell harvesting day (this will be me on Monday) - it helps me to visualize what this apheresis machine is all about
- Post-stem cell transplant interview with Ethan and his girlfriend, Jenna Morasca, winner of Survivor: Amazon - in this one he mentions that his journey with Hodgkin's was the most difficult thing he went through in his life - harder than being a contestant on Survivor, Eco Challenge and running an ultra marathon.
Sunday, March 21, 2010
The Dream World
Saturday, March 20, 2010
ICE Round 2: Aftermath
In the past I've thought I felt like shit, but that was nothing. I liken these past couple of days since chemo to feelings of oozy, raunchy, steaming dog shit.
I am completely zapped of energy. It takes a tremendous amount of effort to get myself out of bed and onto another horizontal surface and that's pretty much all I've been doing. When I do get the strength to shuffle around in the kitchen or to walk to the mailbox I return with a pounding heart and have to immediately sit to calm my body back done again after its excursion. What I have to continually tell myself is that this is because my body and the chemo is working so hard against the cancer cells and that my body is trying to bounce back from being ravaged with three days worth of high-dose chemotherapy. But it's hard to keep that perspective when any sudden movements cause a wave of nausea and when my brain just literally can't focus on even the most mundane of tasks.
As Craig said last night, "If you didn't feel this bad, then we should be worried." This makes sense, I suppose. I feel bad because the chemo is working. It is tearing out my insides - literally. The whole first six inches of my throat feel like an auger went through it hacking away at the soft tissue so that it's hard to speak at a normal volume and uncomfortable to swallow. Despite that, I drink and drink and drink - water, Gatorade, Crystal Light, and more water. It's vitally important for me to force the fluids to flush everything out and keep my kidneys functioning well. I also shove the food down my throat no matter how nauseous I am.
Between the steroids and my body's fatigue, I certainly have a big appetite and eating usually curbs the nausea waves. I consider it fuel for the cancer bonfire that's happening inside of me and I must continue to give it the kindling it needs so that it doesn't go out. This means many frequent meals throughout the day - and it's odd things I crave. Last night I couldn't get my mind off Pad Thai so we ordered in and that did the trick. This morning it was banana and peanut butter sandwich then a healthy portion of bacon and spinach. Right now all I want is fiery chicken sausage so I'm working on Craig to light up the grill.
I am proud to say that I have not vomited and I made it past the vomit point of the first ICE chemo. I also have not had a bowel movement ... sigh. But, you take what you can get. I'm on some different nausea blockers this time around. Zofran in the morning and then I have this cannabis-based drug called Marinol. It's synthetic delta-9- tetrahydrocannabinol, the same chemical found naturally in marijuana. It's often used for cancer patients, AIDS patients, people with anorexia needing an appetite stimulant. Side effects are "elation, easy laughter, relaxed mood." Now this is a much nicer side effect list than what I'm used to reading on the printouts for each of the chemo drugs: nausea, vomiting, diarrhea, heart palpitations, rash, hair loss ... . Truth be told I've only taken the Marinol twice. I'm a big proponent of "the less drugs the better" especially with how many I have in my system without a choice. I like to use mind over matter techniques until I just can't take it anymore, then reach for the drugs. I just never want to be dependant. The Marinol does cut the nausea very well, but I wouldn't say I experienced a "high" - not that I would know what that is like - except for that one time in college ... .
Today is certainly much improved over Thursday and Friday and to make it all better it's been hovering above 70 degrees with bright sun each day. So, even though I'm not able to do much, I'm able to lay in my anti-gravity chair, complete with flip-over shade and full reclining capabilities as I just exist outside in the warmth. There are certainly some healing powers to that. Yesterday I reclined so hard in my chair that I rolled right over myself - head in the arborvitae, ass following immediately afterward. My mom and Gramma were there playing Rummy 500 while I floated in and out of sleep all afternoon. My Gramma, who's weak from getting chemo two days ago herself, is the one who rushes over to help me up while my Mom stands turned away from me, hands between her legs bent over laughing and trying not to wet herself - her usual reaction to these types of occurrences. I also almost pissed myself I was laughing so hard at the hilarity of it all as I picked pine needles out of my mouth and scraped the sap off my elbows.
"Does this count as alternating rest with light exercise periods?" I asked my mom after the summersault stunt.
We laughed more - Marinol induced or not, that was funny stuff. I guess my reflexes are a bit compromised.
Wednesday, March 17, 2010
ICE Round 2, Day 3
ICE Round 2, Day 2
Monday, March 15, 2010
ICE Round 2, Day 1
Thursday, March 11, 2010
Full-Time Patient
I’ve been out on medical leave now since Feb 8, just over a month, though it seems like forever since I’ve been at work. Being on leave is an interesting journey in itself. I thought that I would never be able to stop thinking about my work responsibilities, to stop worrying about deadlines and projects that I was managing. What I’ve found is that my mind is so filled with cancer-related and life-sustaining information that I don’t even have room to think about work.
This revelation has just reaffirmed my choice to step away fully and completely focus on my health and all that goes into regaining it. Mentally I wouldn’t be able to give my job the attention that it deserves and the devotion that I require of myself in my career. Practically, with all the required hospital stays, the blood work appointments every other day, my forced quarantine, and the debilitating days when I am completely wiped of energy would make it impossible to work. It’s only going to get harder next month when the one-hour treks to Yale-New Haven hospital begin.
What makes it easy to step away is knowing how capable, intelligent, and adaptable the team I work with is. For someone who may be a bit Type A, it is greatly reassuring to know that all the projects I was working on are in extremely capable hands. I do feel awful adding to the already full hands of my co-workers, but not once did they instill guilt upon me and immediately told me I was ridiculous when I would make any attempt at apologizing for having to step away. They practically pushed me out the door telling me that I need to focus on myself and to not think about work for a minute. I know that this is not the case everywhere, and I feel so lucky to have that support. Knowing that people have my back helps me to stand up tall when I’m feeling unstable.
We discussed that there were no medical questions asked for the policy, that it was guaranteed issue, and the sales rep and I specifically discussed my cancer and how this policy would give me the capability to not have to work during my treatment.
I remember him saying: “Chemotherapy is awful. Would you have worked during it if you still could have gotten paid without working?”
My husband’s knack for bartering and negotiating has come in handy as he’s made calls to our utility providers pulling the “cancer card” and getting them to reduce our rates. Plus, he’s starting to sell some of his phenomenal wood wall hangings that he crafts which is great for him as an artist and for our bank account.
I know we’ll be fine. But while we live through these few months of limited means I have no doubt that it will teach us some valuable lessons. There’s something to be said about having a thinner wallet and big dreams. You find new ways to get there.