|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 31st 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.