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.  

Another Pet Scan Lead Up

Tomorrow I travel to New York City for a PET Scan and a meeting afterward with Dr. M. It's been eight weeks since my last PET Scan – a rushed, unplanned scan in response to the severe pain I was having. That last scan showed a couple of new areas of likely disease involvement and increased SUV levels (hot spots) in the confirmed areas of disease in my hips, vertebrae and sacrum. It's probable – but not confirmed – that these hotter spots are lymphoma growth, but those hotter spots could also be my new immune system bursting into action and going after the Hodgkin cells in my bones. There is not an easy way to know. My medical team and I have a lot to talk about surrounding this debate and hopefully tomorrow's scan will provide some positive, tell-tale talking points to work with.

Eight weeks is actually a long time for me to go without a scan these days. I could vomit I am so nervous and on edge about it. Over these eight weeks I've gotten five infusions of Vinblastine chemotherapy. It was rough and tough on me and I'm hoping it was just as rough on the flaring areas of disease and everything has melted as hoped. These eight weeks have also brought a lot of random flaring, itchy rashes and disgusting amounts of strange white textures in my mouth. GVHD? It's not the scan itself I'm nervous about, the process couldn't be easier. What I am incredibly nervous about is what it will show and what that will mean for my future. I keep telling myself that I can't worry about what I don't know. Let. It. Be. That's much easier to write then to put into practice.

Craig has been integral in keeping me sane this week with positive distractions. It's probably the sanest I've been yet in the week before a scan. We've had a few date nights: went out to dinner, watched a movie, cooked meals together. Tonight he is taking me to a concert by an a cappella singing group that performed at his school with a promise to introduce me to the Fro Yo heaven that is supposedly Pinkberry. He loved it in Manhattan, but I wasn't allowed to eat there due to my dietary restrictions. Tonight at the new West Hartford franchise I will douse myself in dispensed flavored yogurt and fresh fruit toppings galore.

My mom will make the trek into the city with me tomorrow to make sure that I stay vertical, have a shoulder to lean on, and actually show up for my appointments. We'll catch the last day of New York City's restaurant week so hope to be able to take advantage of that and maybe a museum visit afterward. I'd like to check out the Whitney. We'll see. I'll either be in a really bad mood or a really good mood after the morning's appointments. Either way, time with my mom, the city's energy, good food after pre-test fasting, and art will probably help remedy the situation. But in reality, the entire day will probably be shot at Sloan.

This is a major crossroads. Images of standing in the woods at an exaggerated fork with six different paths to take keep haunting my dreams. If the scan shows this, then it may mean that. If the scan doesn't show this, then it does mean that. If the scan does show that, then it definitely means this. If the scan shows that but not that then this is probably, maybe, the direction we should go ... possibly. Or we could try this or that or this or do nothing or you're screwed, it's over.

Ugh. I just hope to get through tonight and tomorrow without totally getting lost in it. There will be some answers (or at least a clearer look at options) after I get through tomorrow. There is an inherent nausea and shakes that accompanies the wait for the doctor to come in the room to tell me about scan results. I can usually tell by the doctor's body language in a matter of five seconds. Then, it's just waiting to see how they will choose to make the delivery. I like it done fast: good or bad, rip the news off like a Band-Aid, please.

I've long stopped making predictions. I'll be happy with at least stable disease presence. But, I'd be even more elated if I get a coveted clear report.

Worried-about-trying-not-to-worry face

Vinblastine Treatment 4

I'm feeling decent, though the Vinblastine single-agent chemotherapy that I'm on is pretty tough. The primary side effects have been fatigue, deep tissue aches, jaw pain and tightness, and neutropenia (very low white blood cell count/immunity). The drug is given through a short syringe my nurse injects into my port by push after my anti-nausea and steroid premeds are run. It’s incredible what affect such an innocent looking amount of medicine can do. I can’t let the dosage fool me; it packs a punch!

Scaling the wall 

The Vinblastine has done a number on my white blood cell count. The plan was to get weekly infusions, but my bone marrow has said otherwise. To give it some credit, I have been very heavily treated and my marrow is quite compromised. I’m proud to see that it has still been able to produce blood cells at all – for this I am grateful. I’ve never been unable to rise back to normal blood count levels with time or drug assistace.

To remain safe, my WBC count has to be at least 1,000 in order to receive treatment. It hasn't been able to stabilize quickly enough to endure the original, aggressive weekly plan, so I've been more on an biweekly treatment basis. My counts were too low to get treated last Wednesday (ANC 0.6), which is why I felt pretty good last week and this past weekend without the chemo effects. In fact, I felt good enough for a day of indoor rock climbing with Craig. It was our first time and something we both loved. I especially loved the sweet reward of getting to the top and the mental challenge it took to figure out how to get there. I had no problems beyond any normal climbing fatigue and a few battle bruises endured from banging my knees into the wall. It was an exhilarating, rewarding and gratifying experience. There will be more of these types of adventures to come for me in 2012.  

Vinblastine Through the Holidays

Angry Karin on first day back in chemo chair.

I did start the Prednisone the day after my PET Scan and overnight NYC visit. I didn’t get much effect from the 50mg of steroid. The goal was to reduce the inflammation in my body, but I didn’t feel much of anything except a harsh blow when I came off of it. I did however get an effect from the next treatment step. That Friday, December 16, I had my first infusion of a traditional chemotherapy of my treatment past – Vinblastine. I had received it as part of my frontline ABVD treatment – the very standard frontline treatment against Hodgkin Lymphoma.

The idea of a variation of the R-CHOP chemotherapy regimen had been being tossed around for a while by my transplant doc, lymphoma doc, and the lymphoma board at Sloan. It was what was suggested as an alternative to the Revlimid but one that would be a sledgehammer at me. My doctors and I were hesitant to use it as it would be a very toxic blow to me and we are all on the same page that my biggest concern is quality of life. I do not want any more toxicity than I need and I want to be able to enjoy and live my life as much as possible.

We decided to start with a single agent from that regimen, Vinblastine, in order to see if just that one drug would do the trick to melt the current disease activity. Taking just this one drug would also allow me to travel to California with Craig – What? I know! (More on that glorious trip in the next blog – it wasn’t just artistic allusion in those Counting Crow lyrics, we really did go.) My Sloan doctors were more than supportive of us taking this vacation and wanted to do everything possible to ensure that I’d be able to enjoy it.

I received two doses of Vinblastine, one each Friday before we left on our trip the morning after Christmas. I got to skip a week while we were in Cali. The upside to taking a more traditional chemotherapy drug is that I can receive it close to home. I’ve gotten the IV injection right close by, back in the familiar haunt of Hartford Hospital’s cancer center. I’m back under the care of my beloved Dr. Dailey who is working beautifully in tandem with Drs. Moskowitz and Sauter at Sloan-Kettering. I truly have the dream team of doctors. They are kind, wicked smart, understanding, accommodating, thoughtful, and 100 percent in sync with who I am, what my health goals are, and what is important to me.

It’s difficult being back at the treatment center where I started with all of the nurses, lab technicians and secretaries that have seen me from the beginning. It’s as painful for them as it is for me to see me back in the chemo recliner. But at the same time, it’s comforting. They all know my long treatment story, my family, and so much about my life. There is a high level of familiarity there and it takes away the fear of the unknown and unfamiliar. In that regard, I feel fortunate to have forged such close relationships with the team there. We laugh a lot together and I get a lot of hugs and ushered into special rooms on the fast track – the privileges of being a longstanding “client.”

At the first treatment, I was pretty angry and tired. I didn’t want to be there. Craig and I were hosting our big annual holiday bash the following day where nearly 60 people would be at our house and I was much more focused on the fun of that, not this chemo crap, and the unknowns of how it would affect me. But I did it – with the escorting of my mom to make sure that I did it. The infusion is a push IV infusion so the drug administration itself takes about two minutes. I receive Alloxi anti-nausea and Decadron steroid beforehand then a bag of fluid after the IV push. In all, the whole process takes about 90 minutes, including doctor visit. It’s doable, though certainly not as convenient as swallowing a pill at home.

The biggest side effect was constipation – oh, very bad constipation. I was blocked up all through Christmas. This is caused in some part by the drug and a big part by the nausea blocker, as it doesn’t just block one exit, but both. Trying to get things moving was not fun. I felt the normal wooziness the day of the infusion, but was pretty good after that.

The biggest reward is that the pain is ceasing. After just two infusions of Vinblastine, I haven’t felt any pain in my hips and my back pain is highly reduced. A few days after the second infusion (the day before Christmas Eve) I didn’t have to take any more pain pills. This was fantastic as neither the treatment nor the Hodgkin symptoms held me back through all of our holiday events nor our vacation. I was very tired and again, very constipated, through the holidays but things really eased up for me that last week of December.

I went to Sloan-Kettering yesterday and Dr. Moskowitz was thrilled that my pain was reduced and saw this as a good sign that the Vinblastine is working. She told me that she could cry she was so happy. We decided not to add in the other drugs of the R-CHOP or CHLVPP regimens that we had discussed and stuck with what seems to be working with as minimal toxicity as possible. She is fully behind this plan knowing that it allows me to keep my active lifestyle and it was wonderful to rejoice in that with her. It’s not to say that I feel like a million bucks ­ – far from that. But when you’re in a position like mine, the “feeling good” scale is pretty skewed. For me, this is fantastic compared to what early December was.

Happier Karin Week 2 - maybe because carolers
came around to sing for the patients at the cancer center.

Another big development is I have mild Graft vs. Host Disease of the mouth. It is likely a chronic condition, something that develops in 60 percent of allo transplant patients. This is wildly uncomfortable at times, but so thrilling! I can’t believe I’m rejoicing about it, but when I learned yesterday that the weird growths in my mouth are GVHD I wanted to do a happy dance. Dr. Moskowitz sent me over to Dr. Sauter’s clinic, where he came down from the hospital making special accommodations to see me because he was so eager to look in my mouth. All three of us were pretty psyched that because if my sister’s immune system is going after the cells of my inner cheeks and lips, it means they may also be going after the lymphoma. We’ve got some immunotherapy action happening!

My mouth had been very dry, tingly and tight for weeks. The night of my first infusion of Vinblastine, big raised white bumps rose on the inside of my upper lip and along the inside of my cheeks at my gumline. There were lines of white raised trails all along my cheeks that were scraping up against my teeth and gums. The first two nights were pretty painful and I couldn’t eat or drink much without enflaming it.

At that point, we weren’t sure what was going on. It didn’t make sense that the sores were from the Vinblastine. Customarily, it takes at least a week after chemo for it to drop blood counts enough to cause mouth sores. And these mouth sores weren’t open and seething like ones in the past. They were more actual raised growths in my mouth, kind of like under-the-skin pimples on the inside. It felt like there wasn’t enough room in my mouth for my cheek tissues as the skin was so taunt and overgrown. The growths remained for a week though reduced in severity with each day. Prescription “Miracle Mouthwash” helped to numb and soothe the areas as it’s basically like swishing Novocain around your mouth.

Before my second infusion, Dr. Dailey took a look at the mouth growths and found the whole thing so curious. By phone, my Sloan doctors did as well. There were murmurs that this could be GVHD. Of course, I had done my research as well and was convinced by the photos I found online on medical sites that this was in fact what I had.

After the second chemo infusion, the mouth irritation is all but gone. My cheek tissues are scarred and swollen and my mouth is still incredibly dry, but by day 2 in California it was no longer bothersome and didn’t affect my eating or drinking at all. This further solidifies that it is GVHD of the mouth mucus membranes – a common manifestation.

Dr. Sauter explained that the sores were going to come whenever they came. It was likely just coincidence that they flared the day I started the Vinblastine, but that the chemo is actually what is making my mouth better. In his words, the chemo is like “taking a bazooka to my immune system” and is stopping my sister’s cells from attacking my mouth because it is suppressing it. Aha! Makes perfect sense. The hope is that the chemo is working in tandem with my sister’s immune system to go after the lymphoma. He still likes the idea of doing a Donor Lymphocyte Infusion with more of my sister’s cells after a few more hits of the Vinblastine to really get the lymphoma under control. I’m considering this option and will see where my body and head are at in February after four more doses of this.

To help control the mouth irritation, I have now started a steroid mouth rinse. I have to swish it around my mouth for five minutes twice a day. It brings targeted steroid therapy right to those mouth mucus membranes where the auto-immune action is happening and will reduce the inflammation there. If all I have to deal with regarding GVHD is doing a mouth rinse for the rest of my life, I’ll take it.

I’m at the Avon Cancer Center right now getting my third infusion of Vinblastine. Hopefully it continues to do the trick. I’m currently neutropenic again so I received a shot of bone marrow-stimulating Neupogen yesterday at Sloan. Seems that it worked: my neutrophils are up to 3,000 and my bones have the aches to prove that progress. Bring on the poison; continue the healing.