Difficult Realities

Block Island crew (minus 1) enjoying a perfect day.

I realize I’ve been absent from blogging and thank you for the concerned comments. If I haven’t gotten back to messages, e-mails, text, please don’t take offense. Life has been focused highly on mere survival the past couple of weeks.

Yes, I did celebrate my 31^st birthday with a wonderful trip to Block Island with Craig and a fantastic group of fun people. After days of rain and storms, the skies opened for us to enjoy a lazy day of perusing the adorable island- the native trip for Craig and me.

That Monday previous was the first time I’ve ever lost control crying in a doctor’s office. My mom took me in for my second infusion of the VBM and when describing to Dr. Dailey the blinding pain I was in, I couldn’t even get the words out. All I could do was cry and my mom had to fill him in through her own teary eyes.

I got through the chemo in hopes that this pain was just a flare of disease being killed. The rest of the week got progressively worse in the pain department and what I needed for pain control was making me so tired and so woozy.  So was the chemo. So was the disease. I almost canceled on the weekend birthday trip, but pushed and was so glad I did. What was the difference if I was sitting at home on the couch in pain or sitting on an Adirondack chair overlooking the harbor in the sun? Luckily, the non-narcotic Toradol was holding my pain (an intense version of Aleve) so I was able to be clear-headed, but I had to come off of it after the weekend due to possible liver damage it can cause.

Everything got worse. I started having chills and fevers and my lymph nodes in my neck are only expanding by the day. Pain was getting out of control. My parents took me into NYC to see Dr. O at Columbia last Wednesday as he wanted to look at me in person after hearing my symptoms. He agreed with my instincts that the chemo wasn't doing anything. I should have felt some improvement. Instead, it was only making me feel like shit on top of shit by dropping my blood counts and making me even more weak and lethargic. We're discontinuing it. In looking at the long list of treatments that I've had, there's really no sustainable options left. 

He started talking about what a fighter I’ve been and what a trooper I’ve been to handle all of this and I just wanted the talking to stop. He said he’s never seen someone that VBM did not work in. I knew where the conversation was going. I was so tired, I felt like I was just staring at him feeling so defeated and simultaneously trying not to make eye contact with either one of my parents knowing that if I did I would burst into tears. The disease is getting too out of control and there are scant viable options left. This is coming from the doctor who flies to China, Germany, Switzerland, Italy to speak specifically about Hodgkin Lymphoma. His name is synonymous with research surrounding the disease and he has seen hundreds of difficult cases like mine. He is also an extremely positive doctor with so many creative solutions. Unfortunately, the strain of my disease is real fucking creative, too.

What he is suggesting as kind of a last-ditch option is a blast of a very toxic chemo regimen called IVAC. It has come up in the past as a kind of “save until the absolute end” option. I would need to receive it in the hospital over four days with constant monitoring. It will be very rough, I will get mouth sores and vomit and lose my hair again and there's a slight worry that I wouldn't bounce back from it. However, it can open some bridges for me.

Right now my tumor burden is too high to use any burgeoning, experimental drugs, Dr. O gently explained to me. Yes, they may go at the cancer in a different way, but they are not going to be effective against the high volume of cancer I have right now. They will not make me comfortable and out of pain. Basically, I need a chemo strong enough to match the disease right now or we're only going to be kicking pebbles and making my body weaker and maybe even ruling out those clinical trial drugs for the future when they would be more effective for maintenance. 

If I do not do the IVAC I will die from too much stress in my body. I can't continue like this. Even though I don't have disease involvement in or around major organs, my body eventually will just shut down with the continued stress response it has to be in to deal with the pain and tremendous inflammation. A recent blood test (Sed rate) came in at 143 mm/hour marking the inflammation in my body. It should be under 10. As Dr. Dailey explained to me, it is very difficult to know how long I would have - weeks? months? Before a “near-death” experience. The lymph nodes in my neck are so large that you can see them sticking out now.

Should I choose to do the IVAC (which would start as early as Tuesday), it could bridge me to the following things: 

a) There is one more chance at a cure and that is a second allo transplant. This one would be what's called a haploidentical transplant and would use one of my parents or my brother as a half-match. It is very risky and obviously would be very intense, as my first allo transplant was. I would do this at the nation's leading transplant center: Fred Hutchinson in Seattle. I've been in talks with a transplant doctor there who knows Dr. O (everyone does) about seeing what we can do at this point. The two of them have been in talks.

I have too much disease to do it at this point (which would be the purpose of the IVAC), but I don't even know if there's anything else that would affect me being an eligible candidate. We also don't know yet if there are any reasons that my parents or Michael (who would need to be at least a 50% match) would not qualify as donors. We have to get as much as possible in the works to see if this is even an option and to be ready so that when the IVAC gives me a near-remission, we can jump on it, fly my ass to Seattle and start up that whole process. Again, this choice would be a tremendous risk that I might not make it out alive from or that I would end up with permanent damage as a result of Graft vs. Host Disease. 

b) If it clears up a lot of my tumor burden, I can move onto less toxic clinical trial drugs with the intent of keeping things at bay. But if I do this I could lose the one opportunity from the one remission I ever get to get a cure from it. I'd continue with maintenance drugs as long as each one kept working and live out as much life as possible relying on continued scientific developments to come up with new things for me to try with hopefully a decent quality of life. There's no way of knowing how much time this would earn me. 

c) This will help me to make the decision of whether it is time to stop all of this. I'm told that if IVAC does not work then it's safe to assume that nothing in the world will work, again this is coming from the foremost expert in the world. We'll then know that these tumors are just treatment resistant and then I'll need to make a decision of what to do with that knowledge. At the least, I’ll know that I tried the harshest thing I could (in addition to four years of constant treatment and two stem cell transplants) and it didn't work and decide that now it's time to focus on the quality of the end of my life and on being comfortable - not more arbitrary treatments and hospitalizations. 

There have been a lot of tears among my parents, Craig, me, my doctors. I am mostly in disbelief and just so confused how this happened so fast. No, I am not ready to die. Even in pain, I still love my life. I'm faced with some really big decisions right now about how I can still try for some more time, and also how those decisions will effect what very likely could be my last few months of life. Do I want to spend it in intense treatment? Do I want to be far from home and again brought to the rawness that was some of my experiences with my first transplant? I'm very overwhelmed, very scared, so tired and very sad. I am not angry, just more confused than anything as to how this could happen so quickly but then again I guess I’ve been dodging bullets for a long time now. I've tried so hard and feel so defeated. How do I make the most of the life I have left? When do I say that enough treatment is enough and that it's time to just be comfortable and enjoy what remains. No one has a crystal ball.

I'm writing this from Hartford Hospital right now. I had to come into the ER because I was having fevers upward of 103 and they wanted to rule out infection. Plus, I was severely anemic and have already received two bags of blood. Dr. Dailey came over after his shift at the cancer center to talk with me. He too is concerned about how harsh the IVAC will be on me, but has a great amount of respect for Dr. O and trusts his instincts. He too talked about that if I don’t do this, then we’ll need to look at taking comfort care measures as there is nothing else for me right now. He thinks I should give it a shot and then I’ll know that I did everything that I could.

He talked candidly and softly and gently as he always does to my mom, Craig and me. While he was saying all of these serious things like how sad it would be for him and my family, but that they’d all support my decision, all I could think about was how severely I had to pee. I had called for a nurse to let me go several times. I was tethered to heart monitors and an immovable bag of blood. I thought that I would literally wet the bed while having one of the most important conversations of my life. I gave my mom the glaring eyes and whisper across the room and she knew to go out and try to recruit someone. Then, I finally had to just apologize to Dr. Dailey and say that I couldn’t concentrate. I had to pee so bad. He picked up the call button himself and said that there was a “bathroom problem” with his patient.

Finally, someone came and I had to stumble out of my own end-of-life meeting to the sweetest urination relief of my life. It was especially funny because it reminded us all of when Forrest Gump got to meet the president but had so many Dr. Peppers all he could say was “I gotta pee” when he got to him. I – who very rarely drinks soda – had fittingly sucked down a Cherry Dr. Pepper an hour before. The laugh took the sting out of things.

I’m on my second hospital overnight now. My fevers continue. It’s obvious that they are tumor fevers, but they need to wait for blood cultures to come back to confirm that and ensure I don’t have a blood infection. I just continually rotate between fevers and sweats. The two bags of blood helped a lot of with my energy and clarity and the extra steroids they’re giving me has kept my pain at bay. I should be going home in the morning.

However, if I go for this IVAC (I am leaning toward yes, after some mental prep) then I’ll be back in here on Tuesday to start and will be in for at least four days.

I am not giving up hope, but rather communicating the realities of the decisions we're faced with. I welcome miracles and assure you that we're staying positive. Just because I am writing this out doesn’t mean it’s going to go down this way. I’d welcome spontaneous healing with open arms. Please keep all the good juju, prayers, chants, visualizations coming that have gotten me through this far. I am forever grateful.

I am also so fortunate to have a husband and a family that are so respectful that these are my decisions to make for my life and for my body and that they will support me fully in whatever I choose. I know it is beyond difficult for them, but no matter what, they make me feel truly loved.

Same goes for my friends whose kind words as they found out about how real my situation just got have already done so much to heal my heart, which I thought was literally breaking.

I am by no means in this alone. I will have help and I will have comfort and I know that the love I already have all around me with only explode further as we walk down this precarious path together.

Thank you to all my blog readers for your continued support and positive messages of encouragement. Even when I can’t respond to them all, please know that they truly mean the world and help to fill my soul when I feel very helpless.

I’ll be searching my heart and my gut for some answers and when I make a decision, it will be the right one. I am confident in my instincts and the strength and the drive and the fire that I still have within me. I am the one with the power to direct that flame. Even if this is my time, I know that all who love me will never let that light die.

2013 Visible Ink Staged Reading Video

The Visible Ink program at Sloan-Kettering has posted the video from its 2013 staged reading. Here is a link to my piece, "The Guru in the Elevator," being performed by two Broadway actors who I was thrilled hit the sentiment on the head.

Please take the time to watch the others as well. Each showcased piece offers a very unique perspective. If you watch just one other, Mark Jason Williams's play "Recovery - Scene 2 - Bob and Amy" is incredibly moving. 

Enjoy!

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 Complicated Relationship

Hope you enjoy reading my latest piece for The Huffington Post's Generation Why Series: "A Complicated Relationship." This essay personifies the cancer within me and focuses on the diseased relationship I have with this toxic lover that's got a stranglehold on me - the stuff of daytime television drama.

If it sounds familiar it's because it's born from a blog entry I wrote back in 2011, when recently out of my allogeneic stem cell transplant and learning what it was like to be in recovery, thinking that my cancer relationship was finally over. With this reworked piece, I honed in on our complicated relationship status and reworked it to focus on the continued stresses my lover brings.

As always, if you like it, please share it on your Facebook pages, "Like" it, Tweet it, comment here or on the Huffington Post page itself. I'd love to hear your thoughts! Thanks for reading.

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.