Pushing Through Like I Said I Would

A throwback photo.

Sometimes I am embarrassed by how I reacted to my initial diagnosis, shocked at how immature and naive I was – invincible! cancer! fighter! At other times, I’m so jealous of who that 26-year-old was. I feel that about other aspects of my life, too, not just dealing with my disease. As time passes and as I age, more difficult things happen, which can leave me guarded, jaded and tired at times.

I feel like things used to be so much simpler, though they probably weren’t, they were just different. But what I can guarantee is that I did not know as much and now that helps or hurts me depending on the situation.

I’ve never been one to say: “ignorance is bliss.” I’m curious, an information gatherer and problem solver almost to a fault. I want to figure everything out and know about not just everything that is happening in my world, but in the greater world around me. I think that’s why I love books and good news coverage and documentaries so much, because these are things that are really happening even if we as people pretend they aren’t.

But right now, in this moment, I know too much. I know that the tremendous pain I’ve been in over the past four days means lymphoma is growing. It is very intense and very concentrated right in my hips and pelvis and sacrum, exactly where it always flares up. It’s at times like this when maybe ignorance would be bliss, and I could just pretend that it’s a fluke – too much squatting when planting our little herb garden.

My doctors and I don’t even need to directly speak it: they know I know and I know they know what’s going on. No one has said: “It’s cancer in your bones that is causing you this pain” just like no one says the ground is wet because it is raining. Why state the obvious, especially when we’re all getting a little tired of acknowledging it?

I’ve been prescribed a new cocktail of pain meds that got me out of the blinding, seething pain that was Sunday and Monday and into the uncomfortable, woozy, nauseating – though pain-free – high that has been last night and today. Tomorrow we will stick with the plan of a higher dose of Gemzar and the addition of the chemotherapy drug, Navelbine. We’ve got to stop the growth as the pain is intolerable.

When I was first diagnosed, I went at this so simplistically. It was a challenge that I would conquer. I knew it wouldn’t be easy, but I never thought it would be impossible. Now, I’m looking back at 26-year-old Karin for some of that old positivity and confidence.

In my post from May 8, 2009, entitled “Diagnosis,” I wrote:

"So it's confirmed. I have been diagnosed with Hodgkin's Lymphoma, a cancer of the immune system.  

I know I'll always remember where I was when the twin towers were hit. In my dorm room at UNH in between classes as our floor mates all started piling into our room to watch the news coverage huddled together. 

 Now I'll always remember where I was when I got this news: with three cocker spaniels, a hot dog dog, a giant poodle, a black and a chocolate lab, two great danes, a furry, white mutt and Sammy at the Granby dog park. With a slobbery baseball in my hand and Sammy wagging her tail at my feet for me to throw it, I got the call from the oncologist. An odd place to receive a life-changing phone call, but the whole thing has been so surreal that it was almost fitting.  I'm feeling better having a diagnosis and am ready to take on this challenge. I'm looking forward to getting better no matter what it takes. My oncologist is "very optimistic" and assures me that the chemotherapy is very effective and that I'm young and strong and will do fine.  A couple more tests scheduled next week then Wednesday is the big "plan of attack" talk with the doc, me and Craig and the first chemo treatment by the end of the week. Feeling overwhelmed by the outpouring of support from so many people, relieved to know what's going on in my body and that there's a treatment, and anxious to zap these cancer cells out of my system.  I will beat this. It's just a matter of pushing through the tough times."

That last statement was at the time so simple and is now so profound to me. I had absolutely no idea what I was in for. My wildest imagination couldn’t have fathomed what “tough times” would mean. But whatever was to come at me, I knew that I just had to push through it, like how we all have to put our pants on one leg at a time. Simple as that.

I guess none of us ever know what we’re in for and because of that, there’s not much we can do but promise ourselves that we’ll work through the tough times because those are part of this good life, too. 

Gemzar Cycle 2ish

I am two infusions into my second cycle of Gemcitabine. Today was supposed to be the last in the cycle, but it didn’t happen. Then again, there’s really no “supposed to” in my situation. I am far outside of any book regimens at this point. My doctors and I are just reacting and attacking, using my pain syndromes and my blood count levels as indicators of when we’re not using enough or hitting me with too much of the chemo drug.

We scaled down my dosage in the first cycle as my blood-clotting platelets were dipping dangerously low, disallowing me from getting the treatment as frequently as my doctors would want. Now, in this second cycle, my counts have been holding pretty well but I’ve had some bouts of wild pain set in, which makes them think that we need to whack a little harder. A little harder as in dialing up the amount of Gemcitabine I am receiving and also possibly adding in another drug: Navelbine to make sure that we are staying ahead of the lymphoma.

To my maybe not-so-secret delight, that change did not happen today. My platelet level was down to 50,000. It would be way too dangerous to treat me at that level knowing I’d drop even further and would very likely need a transfusion and be at risk for random acts of bleeding and all of that fun stuff. I get a bi-week. This works out wonderfully as I am hopping a train this weekend bound for Washington DC for some time with my college roomie. I couldn’t be happier that I’ll have no chemo symptoms to contend with (including the super swollen face look that I so adore.)

What I am having to contend with, however, is this on and off pain. It sneaks in like a jungle cat, all stealth-like, then wham – attack out of nowhere. It feels similar to having what I’d imagine the claws of a jaguar might feel like if they were scraping around in my sacral and hipbones. The nails dig in and then twist pulling all the muscles and tendons in around the pain that then emanates from that hot epicenter.

Heat helps. Pain patches help. Stretching helps. An increase in my steroid helps – though it’s incredibly frustrating to have to keep popping back up to higher doses of Prednisone (20mg currently) when I know all the side effects they come with. Even with these Band-Aids, sometimes the pain still breaks through and that’s when things really suck. A Dilaudid pill and sleep are really all that will help those times. I am grateful that it is not by any means constant and that I do have options with treating the pain syndrome.

There is no real certain way to know what is even causing the pain. My body could just be old and angry and arthritic, not at all unheard of for all the steroid breakdown my bones have probably endured, the battles going on within the bones, and how much work we’ve been asking my bone marrow to do for four years. It’s not necessarily that the cancer is growing, which is another reason why I wasn’t too keen on hitting it with more chemo today. I’d like to just ride this out a bit and see what happens over the next week. Maybe I just injured my lower back like any regular person. I mean, I was throwing kayaks around … . I kid. I was in on and off pain before that. The big reason I went kayaking was because I finally was having a pain-free day. 

What’s important is that it didn’t stop me from enjoying a weekend away with Craig, Sam Dog and longtime friends at one of their Vermont lake houses. Okay, maybe we had to delay it by a night as I waited for my pain meds to settle out, but that's what flexibility means. We made it, and it was complete with a fire pit and boat, dinghy and ATV rides, blended drinks, meat on the grill, and lots of laughs, reminiscing and catching up. Everything Memorial Day weekend should be. 

[Vermont] 

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.

Regaining Stability

When there are times as a grown woman that I have to be as dependent as a newborn, I latch onto the times that I can be independent with vigor. Sometimes this causes a riff between those who want to take care of me and me, but I have always enjoyed spending time with myself and the feeling of accomplishment of doing something on my own. When I can be functioning by myself again is when I know that I’m past the peak of whatever current hurdle I’m jumping. I’ve grown up and am much better at asking for help when things get messy and unmanageable, and I’m also better at asking for no help when I know I’m perfectly fine – like a kid who doesn’t want his mom to catch him at the bottom of the slide anymore.

My pain was under control as of Tuesday evening with the placement of a pain patch on my belly. It delivers very low dose, continuous medication to manage the bone pain I’m experiencing in my pelvis and will keep experiencing until the initial tumor blow-up process is complete. It cuts the pain completely, without leaving me overly drowsy and loopy and eliminates the up and downs of oral medications and the nausea they leave me with. For the first time, ever, I have an actual pain management plan. I’m grateful I’ve made it this far without having to have one, but now that I do, am grateful that I’m with a team that has done so much to ensure my comfort.

My patch and I took the train in on our own, eliminating the need to do any driving by taking Amtrak from a more local station. The seats were comfortable, the train car was warm, and I was able to work on some writing with power and WiFi access. I dressed up in business casual clothes as I felt in a business casual mood, not a cancer patient mood.

Bendy/Brentuximab Trial: Cycle I

I am one round into this latest clinical trial: a combined therapy of Brentuximab Vendotin (SGN-35) and Bendamustine. The premise of this Phase I/II Clinical Trial is that the drugs work synergistically for maximum effect against the disease. Dr. O has put one person with much heavier disease than I have into complete remission and two others had impressive disease reduction. I am patient number 6, part of the second wave. I hope to add to the positive statistics.

Both of these drugs are proven to work against Hodgkin Disease. I’ve had both on their own at one time or another, but apparently there’s something about the one-two punch and the science behind that.

Each cycle requires two days of infusions at Columbia’s clinic in midtown Manhattan. The first day I received both Brentuximab and Bendamustine, the second day was Bendamustine only. Craig was my partner in the city this time around: there to hold my hand, help carry my bags, find me food, keep me smiling and entertained – all things he is expert at and for which I love him so much. He secured us a hotel with an upgrade by pulling the cancer treatment card. It was right in Times Square and walkable to the clinic and Grand Central, which made things easy.

I had been feeling so awful that I was actually looking forward to starting treatment so that I could again begin the healing process. Therefore Craig didn’t have to deal with the normal caregiver duty of dragging me to the chemo chair. In fact, my body was so spent that it needed two bags of red blood cells the day before I was to head to the city and get treatment. My hemoglobin had dropped down to 7.6, explaining my fatigue and malaise. I had to get my counts high enough to be able to safely receive the treatment drugs and qualify for the trial. With the help of my local oncologist, Dr. D, I secured the apparently “last bed in Hartford Hospital” and hurried up and waited for blood. After they drew my type and cross to check my blood type things were taking excessively longer than normal, though it’s always a slow process.

Suddenly my nurse ran into my room saying: “You had a transplant, right?” Then ran back out saying she had the blood bank on the phone.

She ran back in a few more times with further questions: “Was it with a donor? Was it your sister? What is her blood type? Where did you have the transplant?”

Obviously something was amiss. I’ve been going to Hartford Hospital for years now, they have substantial records on me, and many of the oncology nurses know me well. I have always been O-positive blood type, but that night my blood was coming back as Type A-positive. The head of the blood bank and all the big wigs were pulled in to look at my case and they re-ran my blood and discovered that in fact, my type had changed more than a year after allo transplant. Apparently, this is a very common occurrence, but not so commonly seen in a hospital that doesn’t perform stem cell transplants. Just another bizzaro piece of science. Nothing surprises me anymore.

Once that got squared away, it took two hours for each bag of blood to drip. Sweet Craig stayed with me the whole time and we were finally able to leave the hospital around 1 a.m., get to the Avon clinic later that morning to ensure my counts were high enough, and then make the trek by train into the city via a gracious ride from my mom. So, so many logistics.

As always, there is a ton of waiting at this particular clinic, but once you’re in, you’re treated with the utmost time and individualized attention, which makes the wait worth it. It’s also been great for my reading portfolio. I’m finishing a book a week.

Infusion days went smoothly. The nurse and nurse practitioner that work with Dr. O are incredibly smart, caring, thoughtful, friendly and comforting. They are close to my age and we have quickly fallen into step being able to joke around and be very real about symptoms, side effects, etc. They are excellent at follow-up and side effect management, which is huge in my world.

Our view at "Once." 

Craig and I cozied in my little infusion cube, me under a blanket with the New Yorker and a space heater blowing at me; Craig on the laptop catching up on schoolwork and mindless videos. The time passed as pre-meds dripped then the drugs themselves. Nothing unusual, no glitches. We only had to be in clinic for a couple hours each day, then were free to explore.

We checked out some restaurants recommended by Manhattanite friends, took in some familiar Times Square sites, tried our hand yet again at The Book of Mormon ticket lottery (no luck), and rested in our teeny boutique hotel room. Since we were walking by in the evening, we took a glance at the TKTS board and saw that “Once: The Musical” tickets were half-off. I had seen the show in previews last year and (if I can boast) said that it would be the “next big thing.” Eight Tony Awards (including Best Musical) later, it is. Craig hadn’t seen it, so we decided to splurge. Like me, he loved the music and the energy of the show. All the actors are also musicians performing with their guitars, ukuleles, cellos, mandolins, etc. on stage. It takes place in Dublin and tells the story of unrequited love and musical inspiration. It was a romantic distraction from the real reason we were in the city.

Dave Letterman audience cheerleaders.

After the next day’s treatment we scored free tickets to a taping of the David Letterman Show. We’ve been to a taping before, but this time, we were profiled as “peppy and fun” and chosen to be one of the 24 people they put in the first two rows to be the “lead audience” members. I think both of our doofy smiles and geeky enthusiasm for freebies and behind-the-scenes stuff had something to do with that. Oh, how ironic it was though seeing as I was fresh off the chemo chair, still in a Benadryl and Decadron haze. But clap and cheer we did after our training session and we hope we did the show right as we laughed at Dave’s Top 10 List and enjoyed his interview with Kevin Spacey from spitting distance.

I’m not sure if it was the pepperoni pizza we had after the show or the drugs making my body angry, but I was up all hours of that night with atrocious heartburn and acid reflux. It felt as if someone took a blowtorch to my esophagus. Craig felt awful for me, listening to my moaning and tossing and turning and looked out our 17^th floor window from which he spied a 24/7 Duane Reade pharmacy. All of the sudden he had his pants on and was out the door and into the 20-degree-with-gusts-in-the-teens Manhattan streets at four in the morning. Dodging drunkards and hookers, he came back with Pepcid and a chocolate soymilk that was oh-so-soothing. That’s love.

Sad to say, it’s been a downward spiral from there. The weekend was okay. We had dinner out with our UConn friends, who are always a good time, breakfast with another great friend and then watched the Super Bowl with a bunch of our neighbors. If I can get myself out and around people I care about it’s amazing how much energy I gain from that and what it does for my spirit. It’s when I’m alone that things get really tough without the distractions. I had been overly tired and starting to have some pain set in during the days but just slept a lot and accounted much of it to all the travel I’d been doing and sleep I hadn’t been getting in addition to the treatment side effects.

Yesterday morning the pain came in with a bang. I woke up with severe pain in the bones of my pelvis, hips, and sacrum. It felt as if someone was stabbing them with scissors. When I stood, it felt as my pelvis might just give out and collapse, it felt so full and swollen. My mid-back also had shooting pains and all of my joints felt arthritic. I had suddenly gone from 30 years old to 90. I tried Extra Strength Tylenol but it didn’t cut it and I knew it warranted a call.

After conferring with Dr. O, it seems that the pain I have is a good sign. It likely means rapid tumor death, which can be very painful since the disease I have is confined to such a concentrated area. All of the meds and my own white cells are flooding my little bones and blowing up landmines in there. Being that the disease is within the bone means that this process can be very painful – and it is. I worry that the bones are just going to explode.

Our typical evening cuddle session does wonders for pain.

I have always had a very high pain tolerance and an aversion to pain meds as I cannot tolerate most of them because they make me vomit and make me feel loopy. But now, I cannot function without some relief and I need to ride this out. He expects that the pain will fade after about a week or so. I’m much more accepting of pain if it means positive things are happening, but it doesn’t change the fact that it is leaving me in tears.

I’m working with the team to find some pain management options that will get me through this week without leaving me a vegetable, keeping me pain-free and not a walking ball of nausea. I’m going to be trying a patch, which seeps the medication in through my skin rather than pills as that may eliminate the GI effects for me.  I need to get over my own mental stigma that using pain meds means I am weak, because it doesn’t. This isn’t a power trip. I’m trying to survive here – one moment at a time. Relief will come. Until then, I keep remembering to breathe.