In Search of a Raft

Ducking out in the rain with Craig for some 

Thai food to celebrate his birthday between

a very hard-to-swallow doc appointment and

an always-enjoyably claustrophobic MRI. 

June doesn’t seem to be my month this year. Really 2013 in general hasn’t been treating me that well in terms of the whole cancer thang. Everything else in life has been wonderful, but the lymphoma has really been rearing its head far too much. Too many hospitalizations. Too many transfusions. Too many side effects. Too much pain. Too many appointments. Things have not been stable for over six months now, and the up and down is tough. I know I can’t stop the waves and I’m doing my best to ride them instead, but it is getting exhausting. I wish someone would throw me a freakin’ raft I could float on for a while.

Yes, it is confirmed that all of the pain and the fatigue I was having were indicative of cancer growth. I had a PET/CT Scan done of my full body and an MRI to take a close look at my pelvis and there is progression in old spots and new spots have developed. We have to give up on yet another treatment after just two cycles. Goodbye Gemzar. Hello VBM.

VBM is a combination of Vinblastine, Bleomycin, and Methotrexate. I have had both B and V in my frontline ABVD treatment and I’ve also had V as a single-agent therapy when trying to get into remission for my allo transplant. I have never had Methotrexate used as a chemotherapy agent. This is a pretty rough, intense regimen but one that is proven to work. Apparently it is very old school, something that was used before ABVD came to the forefront of Hodgkin Lymphoma therapy and kind of got forgotten about, though it had very good results.

My scans look pretty horrendous and my pain has been equally so. To get me out of this, we started up already with the new treatment. I had my first infusion on Monday after having my PET/CT Scan that morning. Craig had taken me in for an MRI the week prior that kicked this all off. It was how he got to spend his birthday. Then this Monday was a long day in the city for my mom and me. I vow to never again take the train home after receiving treatment. It was pretty unpleasant. The train was extra cold with A/C blasting and extra jostling. I was nauseous, then had a huge onset of pain and then an uncontrollable bout of chills. I wanted to get off the train so bad and cursed the entire 98-minutes. I tried to sleep or read but nothing worked. The last 20 minutes were sheer torture. Then it was still an hour-and-15-minute drive home, though it was much more comfortable to be in my mom’s car on the heated seat. I could barely muster the strength to get from the car to my living room couch.

The post-chemo feelings continue to today. I’m very lethargic, dry-mouthed, swollen feeling. The pain is pretty well controlled, but my stomach is very unhappy and my body pretty angry. If I let myself, I feel as if I could sleep for a week straight. But, I don’t. I’m determined to still be a functioning human being even while being back on very traditional chemo. The process is bringing back familiar feelings of my past and frankly, I hate it. This is not a long-term treatment, but again, trying something to get me out of the woods here. We have to stop this disease from growing and get rid of what’s there so that I can move onto a treatment that is more tolerable and will serve as maintenance to keep everything at bay. But right now it is just too dangerous to put me on anything that is an experimental therapy.

In the meantime, I’ve started the conversation with a transplant doctor at Fred Hutchinson Cancer Center in Seattle about the possibilities of a future second allo transplant so that if the time comes that I do get a remission from this regimen, I know what all of my options are for what to do with that remission. That whole thing is nauseating in itself to think about.

Last week/weekend I attended a writers’ conference at Wesleyan University where I was saturated with teachings about the craft and the business. It was a wonderful distraction and a good dose of much-needed inspiration. It was exhausting commuting back and forth for long days feeling like I was, but it was worth it. I need to have life balance of some sort even if that means pushing it when I barely can.

Also of note: Sunday we celebrated my dad in honor of Father’s Day and also marked my second transplantaversary. June 16, 2011, was the day that I received my sister’s stem cells and began the growth of my new immune system – my “rebirth,” so they say.  It also would have been my friend Steve’s 38^th birthday had HL not finally taken him far too soon. I cried a lot, for him, for his wife, for me and my family and thinking about what we’ve been through. I cried also because I’m so happy to still be here two years after such a traumatic experience. I cried because I’m still not cancer free and that I know there is a lot more to endure. The memories of it all are still very raw: both the ones that make me shudder and the ones that make me smile in triumph.

No, where I am at right now is certainly not ideal. I need a lot of help. But, I am here and that is what matters. I am doing my best to make the most of it and to not allow myself to fall into the pits of discouragement.

Sick or not, I still have to get groceries, cook meals, do laundry, pay bills, keep up our house, research treatments, keep on top of my medicine and appointment schedules. Sick or not, I still want to love on my husband, play with my dog, hang out with friends, spend time with my family, go out to dinners and breakfasts and see movies and plays, listen to poetry, read, write, go for walks and get back into yoga again. Thank goodness for those things or I don’t know where I’d be.

No matter how shitty I feel, the summer weather is still beautiful, the flowers striking, my love for those in my life stronger every day. This is what I tell myself to calm myself down when the fears get to be too much. I know we are teetering on the edge of no options. I’m not sure what the plan is if the disease doesn’t respond to this traditional regimen either. In truth, I am getting scared. I can’t do much else but cling desperately to hope.

In just a couple of weeks – June 29 – I’ll get to celebrate my 31^st birthday. 31. I couldn’t be more thrilled to keep reaching these milestones, though I do wish I could be running, not crawling, to them.  

Allo Transplant Day+5 through Day+14

Since I continue to not be feeling well enough to write, I’m having Craig transcribe a basic update that I’m narrating. I’ve been in the hospital for 21 days and it’s been 14 days since the transplant. I have not left this isolation room.

Many of the side effects I recently experienced have left. Unfortunately, new ones have come in. The debilitating bladder spasms and pain is gone. I’ve regained control of my bladder and no longer have to use the commode at night. It seems chemo caused this bladder irritation.

Turned out my Hickmann Catheter line was infected so with a minor surgery they pulled that line and put in a new triple lumen catheter right next to it. Unfortunately it is in an awful spot, basically coming out of my armpit, making it tough to maneuver around, but it is working. At least the pain from the infection site is gone.

One-week post transplant my curly locks started to come out in clumps off of my head. In the shower I wet my hair and the weight of the water was enough to pull much of it from the back of my scalp and leave clumps in my hand. My scalp itched and burned so after a few days of discomfort, Craig helped me to buzz it off. I still have some stubble patches but it’s much easier to watch that fall out than longer hairs. While my eyebrows and eyelashes are still in tact, I’ve lost all my nose hair and delicate inner membranes.

I’ve had a few transformations to my bottom lip. I got incredible sores on them as well as in my mouth. The lip area has been particularly uncomfortable because it has been bumping against my teeth, is very dry, swollen, and bloody. Twice now, it has completely sloughed off. That has not been a fun experience. Right now it is pretty normal and I am just working on keeping it moisturized with vitamin A and D ointment. The sore on the back of my left inside cheek is also healing slowly.

Mentally and emotionally, I’ve been better than I anticipated. It wasn’t until day 21 that I said out loud that I’m ready to get out of here. I think it’s because I’m feeling so tired and fatigued and every day brings some new symptom so I wouldn’t want to be anywhere else right now. Here, the experts can do their best to alleviate pain, assure me that this is temporary and expected, and make me as comfortable as possible. I’m still so pleased with the caregivers and have gotten quite close with some of the nurses who have seen me in some very vulnerable moments and positions.

Craig has been with me just about all day every day, my parents have made a few trips in, and I have had visits by a few local friends. Mostly though, I have not had the energy to visit with anyone, return phone calls or emails, nor even be on the computer much. I’ll literally fall asleep typing mid-sentence or the room will spin and I’m too nauseous to focus on the computer screen.

Every day cards, packages, and messages come and I am so appreciative of these warm and gentle distractions. My room is filled with so many reminders of all of the love and support that I have behind me. The medical team is constantly remarking about how bright and well decorated it is in here.

June 29^th brought my 29^th birthday. My closest nurse knew she wouldn’t be here on the day of my birthday so she came in the day before in street clothes to bring me some funny birthday balloons. More balloons and ice cream cake arrived from the rest of the nursing staff along with tons in the mail from friends and family. On my birthday eve, friends came by for a short visit of laughs, complete with luau themed decorations. Though I was drugged up and not feeling well for most of my actual birthday, Craig was here to cheer me up with some games of Family Feud on the Wii and other distractions.

The engraftment of my sister’s cells has started and blood counts have begun to rise. My white blood cells are now at 2.5 and my neutrophils are 1.1. This means my new immune system is starting to grow and things are on track in that regard. The emerging white blood cells have helped to fight the many infections that I’ve had. My platelets and red blood cells are still low but holding. I haven’t required transfusions in the past few days. Previously, it was nearly daily that I was receiving blood products. To add some excitement, I had some scary reactions to platelet transfusions. So now, I need to be heavily pre-medicated before they transfuse.

I haven’t been able to pick up a book nor get through a movie without falling asleep. Somehow the days go by pretty fast, mostly working with the different medical professionals that come through this revolving door, and there’s a lot of napping. I’m nauseous, have been having diarrhea, and vomiting most days, sometimes many times per day, and getting very little bits of food down without it coming up. My stomach and back pain have been very uncomfortable. I can tell that my GI tract is a real mess from the chemo.

My legs and back feel very cramped up since I haven’t been able to walk more than back and forth across the room. I’m getting sick of being attached to a huge IV pole. There are many fluids running 24/7. This caused me to gain up to 15 pounds of fluid. In one night with a little over dose of Lasix, I dropped 8 pounds in just a few hours. This left me dizzy and light headed with nurses rushing to replenish my electrolytes. I am now back at my admission weight and it feels nice to not have all the swollen parts.

I miss my dog Sammy tremendously. I can’t wait to go for walks and cuddle with her when I get home. She has been staying at two wonderful “summer camps” at friend’s houses. The frequent photos and even a Skype session have helped keep me close to her.

Focusing on all that I have to return to when all this is over is a huge help. I daydream constantly about swimming, the beach, hiking, kayaking, picnics with my family, BBQ’s with friends, fire pits, camping, and smiling, laughing and joking without having any pain or discomfort to deal with. I dream about starting a family, becoming a better writer, driving my car, and being able to eat delicious foods whenever I want. I dream about exploring everything and being at the pique of carefree physical health.

The reality is that soon these side effects will stabilize and I’ll get a little bit stronger. I may be discharged as early as next week to recover at The American Cancer Society’s Hope Lodge in Manhattan. With that will be a whole new set of adventures, but most importantly I’ll enjoy some freedoms like being untethered, not getting woken up throughout the night for vitals to be checked, walking in crowdless places, and fresh New York City air. That will be nice.