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.  

A Treatment Plan Outline

We’ve done a little shimmying and a little shaking with the schedule of events but I’ve long ago released expectations of set timelines.

That's the mirror reflection of me on a PET Scan. The 

surgeon is going after that area of black in my right armpit. 

I feel so exposed! Heeeeyyyy, sexy la-day!

[Biopsy]:

I thought I was going to have a lymph node biopsied from my neck this past Thursday, but now it’s coming out of my right armpit – tomorrow. I did see the oncology surgeon that day  – an adorable, friendly little man who has performed two of my previous lymph node biopsies, but he wants to go after some different nodes. After examining my latest CT and PET Scans from Columbia, he’s highly attracted by a cluster of nodes under my right armpit. He says they are especially FDG Avid (hot, hot, hot), are large and are easy to grab. He wants to get some really good tissue samples. He’s concerned with cutting into my neck since I do have such a big cluster of nodes there, but many are small and may not render good samples, and entering there could lead to nerve damage – which I’m already struggling with. He also doesn’t want to give me a neck scar. I understand. Let’s get the best specimen we can. *Note on PET Scan photo. A PET Scan shows all metabolic activity, so don't be alarmed at how much of my body shows up as dark spots, for example the brain, the heart, the liver, kidneys, bladder, etc. are all dark because they are functioning normally. The big blobs in my left neck and collarbone, mediastinum, underarms, throughout abdomen, and the smatterings on my hip bones and upper thighs, well, that's what we're trying to get rid of. Sorry if this is disturbing, but thought it might be interesting for people to see what we analyze. 

[Desperation visit]:

I was in so much pain last Wednesday, I hit delirium. I didn’t want to wait for a phone call back from my Columbia team. I wanted to see a doctor in person and knew that a trek into the city wouldn’t be happening. I went in for one of my always productive and calming visits to Dr. Dailey’s office. After discussing my pain syndrome for a while, he prescribed me Neurontin, a nerve medication, and ordered me an MRI of my thoracic spine to see if there was anything pressing on nerves. These were both things that had also been discussed by my Columbia team, so I knew they’d be on board. When they heard the plan, they were in agreement.

The Neurontin has been helping, especially to stop the pain at night. My Columbia team had me bump up to 20mg steroids in hopes of a boost to be able to enjoy the holiday weekend. Even so, Saturday was shit. I was in incredible pain, spiking fevers short of breath and very weak. By all intents and purposes, I probably should have gone to the ER, but didn’t want to land in the hospital when I knew I was going to Columbia on Monday to see the people that I needed to see and get this all squared away. Instead, Craig and I bowed out of the family Passover gathering, and he took care of me all day, at one point able to get me outside onto the deck furniture he brought out to read and fall asleep in the sun. With time and good TLC, things got better.

[Easter]:

My brother and sister-in-law and the kids slept over so that meant that the Easter Bunny came to visit our house for the first time! We helped them create an Easter egg hunt and hide their baskets. In the morning, our nephew, Jake, 3, came running into our room at 6 a.m. (to our delight, really, it was so cute!) to tell us that the Easter Bunny came. He and his sister, Anna, who is almost 2, were so thrilled to find colored eggs on shelves, in plants and under tables. I don't think about pain when they're around because they're too cute to be anywhere in its realm. 

I enjoyed breakfast with everyone, took my meds and went back to bed for a bit before heading to Craig’s grandmother’s for an Easter visit and then Easter late-lunch with my family. We spent the afternoon at my parents with my sister and uncles and aunt and their puppy, Brodie. There, I could be comfortable wrapped up in a blanket when chills set in and leaning on a heating pad when pain set in and all was fine. It was comforting to be there enjoying tradition and normalcy, besides the coughing spasms every time I laughed, which was a lot.

Suddenly it was crash and burn time and we headed back home. I had a solid gagging, coughing fit in the car that caused me to puke into my hands, onto my trench coat, into my purse, and the Jeep rug mat. One bite of decadent Pastiera too many, I guess.

[Come to Jesus visit]:

Monday Craig took the day to drive me into the city, as I knew my body couldn’t handle the train and he wanted to be there to go over the important information we’d be talking about.

We went over the results of the MRI with Dr. O. The test looks closely at bone and soft tissue, showing things that don’t necessarily pop up on CT or PET Scans. Not surprisingly, I have “extensive osseous metastatic disease,” meaning there are lots of soft tissue nodules (cancerous areas) infiltrating my spine, mostly on the left side, hence all of my pain and numbness, as they are doing all kinds of things to the nerve branches coming out of the vertebrae. Good news is that there are no compression fractures or abnormalities in the cord itself.

Dr. O spent an extensive amount of time with us explaining my scenario, going over options and talking way into the future, noting that if we only plan for the immediate step, we’re only going to be left spinning our wheels. I concur. He infused me with a lot of hope when I was expecting a very dire report. Here’s the current “plan:”

1.     Get Karin feeling better and out of pain, as this is a quality-of-life issue. We will work to shrink down the disease in my bones and stop the pain. We’ll do this with a “short pulse” of induction therapy with traditional chemo drugs. We’ll do this just long enough until I can get a fairly clean scan. Radiation may be involved in this as well. The actual treatment will be decided once we get the biopsy results next week and know for certain what kind of lymphoma we’re working with.

2.     Move onto a clinical trial (many options) that will maintain the near-remission and keep me stable for hopefully a long time.

3.     While 1 and 2 are happening, explore future, future options. We’ll start searching the Be The Match Registry to see if there are any unrelated, matched donors out there that I might be able to get a second transplant from. We’ll also look into some promising vaccine therapies taking place in Texas.

[Signoff:] 

Tomorrow I go under the knife. The surgeon says he’ll give me the Michael Jackson Propofol special, so I shouldn’t feel a thing. I was reading my blog post from my last lymph node biopsy in 2010. Apparently, the day after, I went for a 40-minute walk, baked kale chips and zucchini bread. I don’t foresee that happening this time. I’ve already recruited my bestie to come over and take care of and watch movies with me – maybe we can do a 10-minute walk around the neighborhood.

Stunned and Stupefied

It's been a tumultuous past few days to say the least. I'm still grappling with the fact that the cancer is still there and even more so that it's rearing its head in new places ... the little bastard. However, the shock and disappointment has turned into a sharper focus and an even stiffer determination to rid my body of it. The Bendamustine just isn't the drug to do it. We're running pretty low on options, but there is still an option. What I really need is the immunotherapy that the allogeneic stem cell transplant will provide. However, I can't get that until I'm in remission. This is currently a challenge.

This past Wednesday was a NYC family trip a la the Griswolds minus my little brother who is surely studying hard at school. Despite the chilling cold, my parents, sister and I spent the morning walking around the holiday market and watching the ice skaters at Bryant Park. It was beautiful but also mildly torturous as snaking around the artist booths were the incredible smells of kettle corn, hot cocoa, crepes and sausage dogs. Normally this would be wondrous, but I was on a six-hour fast before my PET Scan. A water-only diet equals sheer torture.

We then walked along 5th Ave. admiring the holiday windows down to Rockefellar where we got to see the lights on the big tree and it was there that I left my family to further explore while I hopped in a cab to Sloan-Kettering. There was no need for everyone to sit in the waiting room with me. And, it was a good thing they didn't as the nuclear medicine center was running nearly two hours late. It certainly gave me plenty of time to thaw from the raw cold we had been in.

I drank the red concoction yet again but it actually tasted much better. The nurse alerted me that they no longer use Crystal Light, but instead, a raspberry flavor mixture from Starbucks. Ah, luxury. They started an IV in my arm and injected the radioactive fluid that would illuminate my innards and there I sat reading my book for an hour until it was time to head into the tunnel.

It's wildly uncomfortable in there and for some reason I had more anxiety than I've ever had. I laid on the narrow table and they gave me a blanket to cover myself while I shimmied my pants down past my knees so that my metallic zipper and buttons wouldn't affect things. This is normal protocol, but on that day, I was also wearing a set of long underwear as it was a high of 29 degrees. Pulling all of these layers down to the tops of my fuzzy winter boots while on my back without exposing myself to the tech was an acrobatic feat.

Finally all was settled and I lay with my arms above my head. Thirty minutes without moving. The CT Scan came first where they pushed me in and out of the tube a couple of times to snap photos then injected dye into my IV, which sends an instant flush of heat through the body. It made me feel like I had just wet myself, which I very well could have after drinking all of that fluid. But I didn't. It's a normal reaction.

Normally I just fall asleep once the machine starts whirring for the PET Scan portion. But this time, I wanted out. For some reason, the tube seemed smaller than ever, the velcro straps tighter than ever around my legs, and I wanted to just scream. Suddenly I had to itch everything and had a frog in my throat that I couldn't clear. All I could do was think of Ze Frank's chillout song reprise: "Hey, you're okay. You'll be fine. Just breathe." over and over and over until the narrow table pulled me out of the tube for the final time. Maybe deep inside I knew that in fact I wasn't okay.

I felt even worse afterward. All of the dye and contrast and such made me nauseous on an empty stomach and I just wanted to meet back up with my family. It was now 5:30 p.m. Dark. Freezing, freezing cold. And worst of all, shift change time for cabbies. No one wants to get someone in their car for too long of a trip before it's their time to go home. Finally, I was able to hail one and huddled into its warmth and the kindness of the driver as we remarked about the 99 cent pizza slice joint and how their business plan could possibly work.

I found my family back at Grand Central, which was a bustling mania of commuters. I couldn't even speak to them before I shoved a few bites of mango salsa chicken burrito down my throat. I parked it next to a homeless man and his big garbage bag as he rocked, talked and sang to himself. I did not care in the least I was so hungry and so tired. The train ride then car ride home was peaceful and full of laughter as I merged in and out of fits of sleep and kookiness.

Not so peaceful was my back. It had been in undulating pain in seething spurts for about a week, aggravated even more by the long periods of sitting and stillness. I had taken a sudden turn for the worse after my ultra positive feelings of just a week prior. In the evening especially I had developed a pain at the top of my left leg that would shoot and pulse all the way down the length of it and leave me helpless with no stretch that would touch it. The pain woke me up that night at my parents' house as it had for several nights before. To add insult to injury, I've been sporting a mirror pain on my right upper back for about three weeks now. Again, not constant, but when it comes, it lets you know it's there.

Thursday was spent nursing this and waiting in agony for the doctor to call with the scan results. It's not like that's a difficult thing at all ... . It's not like I took my cell phone into the bathroom with me every time. It's not like I wrapped it up in a towel and balanced it on the tub edge when I just couldn't put off taking a shower any longer. It's not like I walked around with it in my back pocket all day and checked the screen every 20 minutes. Oh wait, yes I did.

It wasn't until nearly 7 p.m. that I got the call. A call I probably could have done without. At that point I knew that it was going to be bad. In my vast experience when I don't hear results until very late in the day that means the doctor has been conferring with his/her colleagues, looking it over thoroughly, maybe grappling with how to break the news. I ran up to Craig's workshop above the garage where he was doing some woodwork and put the phone on speaker so that we could each hear what Dr. Moskowitz had to say. It was freezing up there but it didn't matter because as soon as she said that the scans looked "puzzling," my whole body went numb.

Craig diligently took notes on a pink lined Post-It note while I mumbled back "uh huhs" and "hmmms" back to her. After some beating around the bush, the report was that previously involved lymph nodes had shrunk some in size, but were still showing Hodgkin's activity. In addition, some new hot spots appeared on my vertebrate and left rib. This was stunning and nauseating to hear.

When I told her about the back pain – something I probably should have reported earlier but didn't want to deal with – she was highly concerned. She wanted to make sure that the cancer lighting up on my vertebrate was not compressing any nerves. If it was, I could be left with permanent weakness and irreversible damage to my body. It was decided that I would go back to Sloan the next morning as early as possible and enter through their Urgent Care/Emergency area where I would need to get an urgent MRI. If it showed that nerve damage was occurring, immediate hospital admission and radiation to those areas would be needed. Dr. Moskowitz apologized in advance that it wouldn't be a fast nor pleasant experience, but that it was the quickest way to get immediate scan admission. Again, more nausea and bewilderment.

After I hung up the phone and put away my "professional" brave voice I lost it. There was a lot of crying, a lot of F-bombs thrown. Some kicking and doubling over. Craig even reverted to showing me pictures of puppies but even that couldn't console me. He was also at a loss and visibly upset. I couldn't even function. I just curled up in the corner of the couch and turned on the TV. To my delight, Charlie Brown Christmas was on and I lost myself in the story's innocence.

Seemingly unconsciously Craig and I packed a suitcase in anticipation for a possible long hospital stay and were on the road back to the city, this time via car, at 5:30 a.m. We arrived at Urgent Care by 8:30 a.m. so the craziness had not yet set in. My nurse was so incredibly kind and kept reporting back to me on what the status of things were. We were moved from a curtained room with a bed to a curtained room (or maybe more appropriately, closet) with a recliner. There was a TV and we had the laptop on which we watched movies and stupid online videos. After two hours I saw the ER doctor. After four hours I was transferred via wheelchair to the MRI area of the hospital.

Somehow previous to this, I had managed to avoid the need for an MRI scan (Magnetic Resonance Imaging). It uses a giant magnetic field to align the magnetization of atoms in the body and reveal pictures of detailed internal structures. I was vaguely prepared for how narrow and deep the machine's tunnel would be, but I was not prepared for how loud it was. I had to remove all metal and was scanned with a wand like at the airport. They gave me ear plugs to shove in and once again I had to lay on the narrow shelf. My head was between two foam blocks and they stuck even more foam between those and my temples to make it very firm. I was strapped down, given a pressure bulb to squeeze if I needed help and told to lie very, very still ... no deep breaths, no shallow breaths. When they pulled me out to put in the contrast midway through, I was told to remember not to move then either.

I felt like a Chilean miner being pulled out from underground in that narrow capsule. Afterward, I fact checked my feelings. The MRI machine tube has just a 24-inch diameter. The miner's escape capsule had an inside diameter of 21 inches. My comparison wasn't that far off. But if they could do it then I could do it, squeezed in there with eggshell colored plastic surrounding my entire body just 8 inches or so from my face. It took everything in me to not freak the F out. And I am a petite person with no claustrophobic tendencies. It felt like being buried alive.

The sweet accompaniment to it all was the pounding of jackhammers all around me in a jarring and inconsistent symphony of sound. The ear plugs were a joke. The magnets were so loud as they spun and moved and I could actually feel the magnetic force field enveloping my body. It was one of the longest 40 minute snippets of my life. And I had thought first period high school pre-calc was bad.

But I made it through ... snowflake print Johnny over skinny jeans and all. As is everything else, it was only temporary. My biggest concentration during it was remaining as still as I possibly could for fear of messing up the picture and having to repeat the scan. I was wheeled back down by a sweet, sweet man named Richard to the pod closet in which Craig was waiting.

Another two hours and the doctor came to tell me that the radiologists had read the results and that things looked clear. There was no immediate danger to any of my nerves. It's likely that the pain I've been experiencing is from shifting disks in my back pinching nerves intermittently. It seemed that the doctor and the nurse were just as excited as we were and were eager to expedite our discharge.

Once again, I hadn't been able to eat and Craig had only picked at the breakfast box we had been given. We both randomly wanted Pizzeria Uno so badly and for some reason thought that getting off a mall exit off of I-684 on the Friday night before Christmas was a good idea. We sat in gridlock adding another hour to our ride but the deep dish pie and Caesar salad was so worth it. We slept very hard Friday night when we finally made it back home.

While all of this has been happening, my oncologist has been writing an individual study specific to my case in the hopes of obtaining a yet-to-be FDA approved drug on a compassionate use basis. The drug is called SGN-35. It's a targeted missile drug, unlike normal chemotherapy and different in its makeup than anything I've ever had before. It actually seeks out and destroys the type of cells known to exist in Hodgkin's rather than just arbitrarily attacking all fast-growing cells in the body.

SGN-35 is a hot ticket drug that was all the rage at this year's American Society of Hematologists conference and in Scientific American magazine. Dr. Dailey, Dr. Cooper, and all the doctors at Sloan have mentioned it to me as the next step should the Bendamustine prove ineffective – which apparently it has.

The drug is a huge breakthrough that's very close to being a mainstream treatment for Hodgkin's patients. However, it's not there yet and there are no open clinical trials anywhere in the nation that I qualify for. The hope now is that the pharmaceutical company that possesses it will have compassion for my situation and release it into the hands of my doctors. Right now, Dr. Moskowitz is diligently making my case. And here I sit doing what I do best ... waiting.

On Thursday, the day before Christmas Eve, it's back down to NYC to find out the verdict and hash out a "plan" (a word I use only in the loosest sense possible).

Post-Scan Update

I had my much anticipated PET and CT Scans yesterday. Last night around 8pm, I got a call from my Sloan oncologist with the results. The later and later it got to be in the evening, the more I knew that it wasn't good news. My scan was not clear.

The areas that showed as hot spots (denoting likely cancer activity) in my scan two months ago have shrunk some, but are still lighting up with activity. What's more concerning is that there are some new hot spots on the vertebrate of my spine and on my left rib.

I've been experiencing tremendous pain in my very upper left leg with shooting pains all the way down my leg on and off for about five days now. I also have a lot of pain and inflammation in my upper right back, which has lasted a while.

Because of these symptoms and the hot spots on the scan, my doctor ordered an emergency MRI so that we can immediately assess what is going on. So, Craig and I drove back to Sloan today and now I am here in the urgent care center waiting to get the scan done. The MRI test will be able to more accurately reveal what is happening and will be more definitive as to whether it is cancer.

If in fact it is cancerous lymph nodes pressing on nerves, I'll be admitted today and we'll start radiation to those spots immediately as permanent weakness and irreparable damage can be caused if we let it grow. If it is some fluke, then hopefully I can go home today.

Whatever it is, I'll find out by later this afternoon. I'm deeply disappointed that the Bendamustine isn't working as expected. I'm very tired and very anxious, but we're keeping entertained and holding onto hope.