IVAC At-Home Recovery

Welcome, August. I’m proud to say I made it through July – barely, but I made it.

I’ve been home since last Thursday when I was deemed ready to leave my hospital bubble. This past week has been one of recovery and discovery of my limits and my capabilities.

There has been a whole lot of sleeping happening and resting in general, but also some actual summer fun mixed in. I refuse to be robbed of the entire experience of summer 2013, so I’ve done what I can with the incredible help of Craig and my mom and sister who have been here to nurse me back to health and keep me entertained so I don’t totally lose my shit focusing on what I’m facing at the moment.

I can’t say enough about how kind my husband is. Since the very beginning he has ensured that I keep normalcy in my life and knows what makes me happy and wants to make sure I do it. Even if I complain at the onset and say that I can’t, he pushes me just enough so that I don’t fall down the rabbit hole and disappear.

Incredible ladies

It’s very easy to push people away when I’m not feeling well, but he knows I always feel better when surrounded by the very, very special friends I have in my life (in balance with my much-needed alone time). With that in mind, this week we went to an outdoor Rolling Stones tribute concert with friends, had a few friends here in the evenings just to hang, had a date night of a delicious dinner in one of our favorite parks, and I had a girls night at my home where six of my closest friends since high school (or earlier) brought over tons of food and albums of old photos and we spent the night laughing and talking out on the porch under the summer stars until the mosquitos sent us indoors to continue there. It’s been a lovely and wonderful week.

I feel so very loved and so much more comfortable in allowing myself to talk more openly and honestly and to allow others to help me – whether by talking with me, bringing us food, sending adorable gifts and treats that brighten our days. I am much more accepting of those who want to spend time with me and help out because I realize that it’s not a burden to them  - they truly want to – and I truly appreciate them being in my life. I’ve also accepted those who are not there and realize that this is difficult for others to handle, too. Yes, it’s taken me being fantastically weak to get to this point socially, but I’ve been testing the boundaries and have been so pleased with how receptive and loving everyone has been – not that I ever doubted it, just that I was always scared and guarded. Right now I don’t really have a choice but to let it all hang out.

wooded beach

I’ve also been spending many days with my mom and my sister (who is home from out west to spend time with family for a while). My mom is beyond incredible and has always been. She swoops in and cleans my house, changes my sheets, helps me with paperwork, rubs my feet and calves with lotion, waits outside the bathroom door to make sure I don’t fall in the shower, escorts me to appointment after appointment, cooks for me, tucks me in, all while able to laugh and bitch right along with me about this crazy conundrum we find ourselves in.

My sister has been here to relax with me, watch over me, cook me food and just hang like sisters do. We don’t have to impress each other and it’s so nice to have her around. I can talk or not talk, fall asleep or be demanding and she's cool with it. As going to an actual ocean/beach would take way too much out of me, we spent one day together set up on a blanket, me under an umbrella, at a little pond beach in my town. It was so nice to be out enjoying some sun and summer breeze amid the pine trees. We made our own “beach” experience. She’s been so helpful and thoughtful in so many ways.

I just started driving again – short distances – for the first time in weeks and that feels good. Every day I am getting a little more strength. But it’s taken a while to get here and I’m still far from perfect. Tuesday marked three weeks since the start of IVAC. It is as brutal as they promised. Even since being home I have been so weak. I could barely walk up the stairs for the first few days and taking a shower and getting dressed was a big accomplishment for the day. I would need to go to bed afterward. The nausea has lingered and the fatigue is phenomenal. I really have to pace myself.

I barely have an appetite, but I do have overall body aches and some pain. Yes, in my damn hips. It’s nearly impossible to know if it’s pain from cell death, pain from the Hodgkin’s flaring despite the harsh treatment, pain from my bone marrow working hard after the Neupogen shots. I try so hard to stay in tune, but things are all over the place right now. But what I do know is that it is nowhere near the pain I was in pre-treatment and I’ve also still been remiss of high fevers, so this must mean something!

Same goes for the palpable lymph nodes in my neck, which I touch no less than 129 times a day. Some days I feel that they’re growing, others that they’re shrinking and even others that new ones are popping out. It’s certainly difficult not to let paranoia take over.

We’ve been watching my blood counts closely. My white cells are great – high in fact. My reds are low, but no more than usual. It’s my platelets that are lagging. At most recent check, they are 59,000. It is unsafe to do a second round of IVAC until I am closer to 100,000, especially knowing how low my platelet level dropped and how minimally effective transfusions were after the first round. If I don’t have enough reserve there could be life-threatening bleeding complications. Dr. Dailey and I also agreed that I should get my body stronger before more treatment. I’ll get my counts checked again tomorrow and we’re tentatively aiming at starting up Monday.

However, if I am having Hodgkin’s symptoms, then we need to strongly consider not doing another round of this. It would not be worth putting my body through that extreme toxicity again. It is very dangerous. We’re going to see how I feel.

In the meantime, we’ve been back and forth with the haplo-transplant team at Fred Hutchinson in Seattle. My parents, brother and I are all getting our HLA typing redone and having to get special bloodwork done to be sent back to them so that they can determine who of the three of them would be my strongest match. The doctors there are in touch with Dr. O and everyone is working so that if I do hit a remission and I do decide that I want to do a third transplant that all is ready to go as quickly as possible.

I haven’t gotten any closer to making that decision. I don’t think I’ll be able to until I see the results of my PET Scan post cycle 2. That’s going to reveal a whole lot. And, whatever way it goes, each scenario carries a whole lot of baggage. No evidence of disease? Great, but that leaves me with a huge decision to make. Do I go for transplant, which could potentially cure me despite the very real risks, or does it mean that I opt for much less toxic, novel therapies in clinical trial that will give me quality of life but we have no idea how much life if the remission starts to slip away. The chemo didn’t work? Does this mean it’s over? I was told if IVAC doesn’t work, nothing will work. Do I continue to pursue more trials if and when something opens that I haven’t tried already, or do I just focus on comfort and quality of life, spending time enjoying it instead of in and out of the hospital all the time? I’m predicting a pretty hellish time leading up to that scan and have no idea how I’ll stay sane. One test has the potential to seal my fate.

But before I deal with all of that, I first have to somehow gear up to knock myself down to zero again just when I’m getting a little glimpse of feeling better. It’s that old scenario of knowingly placing my palm on a hot burner. It will hurt. Isn’t this the definition of insanity? Banging your head on the wall continuously and expecting a different outcome? Well, this is one final bang, one big hopeful push that for once I will have a different outcome: instead of growth, retreat. 

Let's Do This Thang

I once again feel very, very good. Last night I actually paused to check if I was still breathing because I was breathing with so much ease. I have no fullness in my chest and no twinge over my heart when I breathe deeply. I've made a full recovery since the cold that sent me down into the depths of fear. My mood and outlook are a million times better, and I am again completely focused on moving forward. Tomorrow will be an important part of that movement: my Day +133 PET Scan – the one we bumped from last week.

I'm pretty psyched up for it rather than psyched out. This has never happened. Of course I still have plenty of anxiety and worry, but I feel as confident as I think is possible going into one of these things. I feel ready: Let's do this thang. Maybe that's why I had a rough patch there. I knew there was something else going on and didn't want to spoil results. I'm now much more ready to handle those results – whichever way they might swing. I feel fantastic by my standards and that's what matters.

Day +119 Recovery Update

Last week’s check-up at Sloan-Kettering was the smoothest that I’ve had yet. A friend’s mother’s best friend, Renee, picked me up from my home and drove me all the way into Manhattan. We hit no traffic on the way in and very minimal on the way home – a rarity. The smooth nearly seven-hour roundtrip commute allowed me the opportunity to get to know this incredibly giving woman who offered up her day and escort services to help out a near stranger. She incorporated a lunch visit with a friend while I took care of medical business.

I completed the drooly, spitty, alienish process that is the monthly Pantamadine breathing treatment to prevent against PCP pneumonia. After I removed the misting pipe from my mouth and was unzipped from my human size plastic bag they lock me in to hold in the medicinal excrement, I was ushered to my next part of the appointment.

Dietary Negotiations

“So now that I’ve essentially reached 100 days, do any of my diet restrictions loosen up?” I asked Dr. Sauter at my Day +98 check-up.

“Now we’ve reached the point when it’s time for negotiating,” replied Dr. Sauter. “What is it that you want to eat?” he asked me playfully.

Oh no. The pressure of this immense decision! I have to pick something that’s worth it and can’t push the requests too much or I’ll lose my bargaining power. Must make this a good one. Out came the first thing on my mind – something that’s been on my mind since getting out of the hospital:

Homecoming and Day +95 Update

I took a blogging sabbatical for a bit as I got my head screwed back on. This is not to say that it's completely in place yet, but it's many rotations closer than it had been.

I'm home. I arrived home on Friday night, September 2. I spent the entire summer of 2011 away: June 9-September 2; A summer in The Big Apple. My last days in the city were spent packing with the help of my mom who stayed with me for the last week and put up with my incredible moodiness as my exit day approached. The last day was primarily spent at the Sloan clinic and waiting in the pharmacy for all of my drugs to go home with. I said an official goodbye only to the Hope Lodge programs manager whom I had grown close with and two men on my floor who wished me well as I cleaned out our shared kitchen cabinet. None of my close friends were out on the roof deck when I left, and I think it was better that way. I was extremely sensitive and in an emotional torrent.

Day +66 Update

It's time to make some big moves with my treatment. This has successfully sent me up a wall in anticipation, worry, and confusion. Compounding those mental feelings are their physical counterparts. The past two weeks have been particularly rough for me: body aches, chest fullness, night sweats, back pain and increased fatigue. These feelings are not as foreign as the post-transplant side effects have been. In fact, they are far too familiar for my taste and I desperately hope that the lymph nodes in my neck and the tenderness in my back and hips are just my body repairing from the trauma it's been through.

If it is lymphoma creeping back in, it is not the end of the world, but it will make my recovery world riskier and more difficult. I've talked these symptoms over with my transplant doctor and we've decided that rather than guessing at what might be going on, it makes most sense to do another scan. A second scan is normally done around Day +90 anyway, so we're just bumping it up a bit. This way, we can better know what we are dealing with. Is the enemy again on the attack? Or are these just normal body rumblings surrounding all of the adjustments and growth happening inside of me? My doc wants to see diagnostic evidence and I completely agree with our plan.