Hope for the Best, Prepare for the Worst

It's only been six days since my last post, but an incredible amount of things have happened. As has been my life for the past few months, plans, emotions, symptoms change multiple times a day and I'm working incredibly hard to continue to roll with each of them without ending up totally off kilter.

Wednesday evening I started to feel crummy. Not the normal crummy of chemo fatigue, but a different kind. I could tell that something was brewing. The wind had been taken out of my sails and my joints ached and groaned. These symptoms continued on and off until things really culminated Thursday night when I woke up with shaking, violent chills and a 100.6 temperature. I then woke up several more times throughout the night soaked in my own sweat ... my body pooled in it and my skin clammy to the touch.

The chills and fevers continued the next day as Craig, my mom, sister and I traveled down to Sloan for our education day with the transplant team. As soon as we got there I was freezing, despite wearing a cardigan and pants. While waiting for my pantamedine breathing treatment I just couldn't stop shaking and my teeth wouldn't stop chattering. Between appointments I grabbed a hot chocolate out of the beverage machine in the waiting room hoping that it would help warm me up. No such luck. When we entered the room with the nurse and doctor she remarked at my trembling and gave me a blanket to put around my shoulders. They took my temp and it was rising to the 100 degree mark again. Tylenol helped to cut the fever and to calm my body down but Dr. Sauter was still concerned and ordered some blood cultures and a chest x-ray to check into what was going on.

Despite all of this, the show went on. My sister and mom were taken into their training session where they were taught how to administer the Neupogen shots which she'll be doing at home. Conveniently, my sister is currently living at my parents and even more conveniently, my mom is a nurse much accustomed to giving shots. This saves my sister from having to self-administer. She'll get a shot at 6:45 a.m. every morning for six days, alternating the entry site from the arms to the belly to the legs.

The training session for Craig and me included consenting to research studies, reading over the hard-to-swallow procedure consent form, learning about the new Hickman line catheter I will need to have placed in addition to my port (as demonstrated by the flesh-colored plastic model "Chester Chest"), the 12 meds I'll be taking post-transplant and all of their side effects, the nutrition restrictions I'll be under, the calendar of "events," more about graft vs. host disease. You know, all the fun, serious stuff. As overwhelming and daunting as it all was, the nurse that we worked with had such a great approach. I immediately clicked with and felt at ease with her. She was able to bring in some humor without making light of my situation and I appreciated the funny, sarcastic quips.

Then it was time to meet with Dr. Sauter to once again discuss the details of the stem cell transplant procedures and once again go over the risk factors. He spoke about how he is hopeful of my outcome, especially with the 10 out of 10 HLA factor match that I have with my sister, the fact that I responded so well to the GND, and that I obviously have such a great support system, including a fantastic local oncologist ... all things in my favor. I'm doing my absolute best to focus on these pieces but it's hard not to harp on the other side of the coin, which he had to discuss with me again – the grim odds and his words, which keep echoing in my head: "I don't have to tell you that you've got a bad disease. They call Hodgkin's the 'cureable cancer,' but when it's bad, it's very bad."

To say the least, we were all exhausted after having swallowed so much information. Exhausted, but also more confident on how this will all pan out. We had planned to visit the Matisse exhibit at the Museum of Modern Art but that was just not in the cards after what turned out to be a very long day.

Friday night the fevers were back with a fervor. This time I spiked to 102 degrees and again drenched the sheets and my pillow case, now stained with an imperfect sweaty circle. The chills were awful and Craig spent the entire night with one eye open and a hand over my forehead constantly checking my clammy skin.

After a Saturday morning call to the attending physicians at both Sloan and Hartford it was ordered that I headed to the Emergency Room. It was a beautiful, sunny day, but Craig and I spent the vast majority of it in the Hartford Hospital ER. Blood cultures were retaken. I got another chest x-ray, had to pee in a couple of cups, and had the very back of my nose swabbed with a giant Q-tip. This was all in an attempt to check for growing bacteria or present viruses that might be the cause of the fevers as anytime a fever presents, it means there is some kind of inner battle going on.

Accustomed to these types of trips we thought to bring along the laptop and some DVDs to keep us entertained. Waiting for blood test results and trying to get discharged from the ER are two very drawn out processes. After nearly six hours, the attending ER doc gave me an antibiotic prescription to treat the only thing that was slightly off in all of the test results. My urine had some very, very minor signs of a possible urinary tract infection, though not at the levels that they'd pay any attention to in a "normal person." He spoke to both Dr. Sauter and the person covering for Dr. Dailey and all decided this was the best course. Basically it is grasping at straws, but since then I've been taking Keflex four times a day in hopes to treat whatever this is.

Sunday was a bit better. Monday and Tuesday I again felt in the dumps. I had several conversations with Dr. Sauter yesterday about my symptoms and how to proceed. The fevers are still high, especially at night, and the night sweats are fierce. Sleep has been incredibly broken (for both Craig and me) and my appetite is nil.

I hated to even say the words but I had to be honest and brought up the conversation with Dr. Sauter that this is eerily similar to how the disease presented itself during my last relapse. While we were on our cruise at the end of June, every night I faced shaking, violent chills and though I was intentionally thermometerless, I no doubt had fevers. I told him I was very worried that this was the Hodgkin's already growing back. I feel the same way that I did each other time it has happened.

Obviously this is concerning and after some thought and collaboration, Dr. Sauter called me back and explained that he wanted to get me in for a PET Scan first just to rule out if there is any disease creeping in. So we've bumped things by a day. Now today, instead of checking into outpatient surgery to get my new cathether put in, I'll be heading to nuclear medicine for yet another scan, my seventh. As soon as I am done with the scan I'll give Dr. Sauter a call and he'll let me know the results and whether I'll go ahead with the transplant process tomorrow. We're packed up and ready to go as if we're in for the long haul, but realize that this might not yet be the case.

Dr. Sauter explained again how crucial it is that I am in a good remission before going into the allo transplant ... studies show that those patients that are have a much higher success rate. Basically we're trying to create the absolute most ideal conditions. He said that in the past, the allogeneic transplant used to be like a "Hail Mary pass", a last ditch effort at saving someone, but these days, if the contributing factors are ideal, patients can be, and are, put into long-term remission. Plus, if the Hodgkin's is brewing, we go ahead with the transplant, and it comes back full force despite the higher dose chemo, it is much harder to deal with as a post-allo patient, which comes with its own bag of complications.

So, once again we're waiting on a scan. Three suitcases are waiting at the door for today’s trip with enough to keep us clothed and occupied for many months if needed. All the house and medical paperwork is in order. But the chance does linger that we might be turning back around to start yet another course of salvage chemo treatment. We're preparing for the worst and hoping for the best ... . I'm not really sure which is which. Whatever happens and whatever I need to do I will do it. I'm up for whatever it takes to get me through this. I am scared as hell, but I am nowhere close to giving up.

It's On

So it looks like this is actually going to happen. It's getting real. Everything seemed so far off when I first relapsed, but suddenly, it's the first day of autumn and we're closing in on October. GND chemo is behind me and it's time to take the next giant leap. My admission date to Sloan- Kettering is next Wednesday, Sept. 29th. That's six days from now, but who's counting?

This means that everything has fallen into place. All of my sister's tests came back on Tuesday and she was given a clean bill of health. This is great news for her, and for me. Plus, we are now doubly sure that she is the ideal sibling match as the HLA testing done at Sloan confirmed Yale's results. All systems go.

And a system it has been. Getting this admission date was like pulling the gun trigger to the start of a long endurance race. I got calls. My sister got calls. The insurance coverage got approved. Long-Term Disability kicked in. It's a whole, magical series of events that happens as each patient begins down the transplant road. Luckily, the Sloan team is handling all of those logistics for us and they're even pleasant when I can't let go of control and call to check up on the progress of things.

A big piece of the prep was the body function tests that I was put through on Tuesday. We stayed at friends in White Plains on Monday night so as to avoid the rush hour Manhattan traffic. It was great to see their place and catch up over a fab meal and chocolate chip cookies. It makes such a difference when we're able to mix in something fun to the 3-hour drive. Early Tuesday we were up and my escort, Craig, was driving into Manhattan. It's so fortunate that I have him as I don't think I'd ever be able to navigate that traffic – nevermind when I'm half asleep.

I repeated the pulmonary function test. However, Sloan's version was quite different than the breathing tests I've had done at Hartford and Yale. I actually had to sit in a clear vertical box which reminded me of a glass shower stall except with a big breathing tube sticking through it for me to blow into. It was called the "Bodybox 5500." This made me laugh because I could only think of it as being pronounced by the dramatic voice from the previews of every action movie.

I'm assuming that the lung diffusion capability test again did not go very well. I was clued into this when the pulmonary tech asks: "Did you have any recent surgeries?" I replied, no, just several biopsies months ago and asked him why he was curious. "Oh, just because one of your tests had a much lower result than the others," he replied matter-of-factly. I just sighed and explained how much chemo I've had.

An echocardiogram of my heart followed. This test just requires some sticky disks taped to my chest and a lot of pressure on different areas with a lubed up probe in order to snap photos and audio clips of the heart.

Then it was onto the dentist, right there in the Sloan clinic. This is their standard protocol of pre-tests before anyone undergoes what I am about to. I was so tired at this point that I fell asleep in the dentist chair waiting for him to arrive. After a panoramic x-ray and a quick examination he said: "Well, that's the best mouth I've seen all day." I like to think that a sparkle beamed off of my front tooth like in a cartoon. Finally, good news. I still maintain my 28-year no-cavity streak. His hygienist did however determine that my jaw soreness is due to clenching while I sleep. This is why it feels like I've been punched when I wake up each day. She says it happens when people are under a lot of stress. I'd say I probably fit into that category.

Somewhere in between there, Craig and I bumped into Ethan Zohn, Survivor Africa winner and fellow Hodgkin's survivor. We've spoken via e-mail and phone, especially now that I'm having my transplant at the same institution that he did. He was there with his girlfriend, Jenna, Survivor Amazon winner, for a follow-up. They were so incredibly generous in sharing their stories with us, spending nearly an hour with Craig and me giving insider tips to survive all the days in quarantine and what to order off the hospital food menu. We now know that the turkey burger and the chocolate shakes are actually pretty good. It's so amazing how once you're in this "cancer club" we're all so bonded. It's tremendously refreshing to talk to people that can relate to us on so many levels. It doesn't matter if you're a reality TV star, chemo strips everybody to the bone.

After several hours it was back on the road riding a celebrity-encounter high. We'll be back to NYC again tomorrow where I'll get some more details from Dr. Sauter on next Wednesday's start. My mom and sister will be along for the ride as Kristen will be receiving her donor orientation and Neupogen shot training. We also plan to do something fun in the city to counteract the building anxiety.

I'm very tired, very anxious, very eager, very achey all at the same time. But I'm ready. I love having a date to count down to and a to-do list to check off. It's helping me to keep focused and build confidence. So is this beautiful weather.

In yoga class today the instructor had everyone pick an affirmation card out of her hand like you'd pick a card for a magic trick. Mine couldn't have been more appropriate. It told me to think of a fear that has been haunting me and to focus on letting it go to be dealt with by the divine ... to not let it control me, but to realize that all will work out. So that's what I'm working on ... letting the fear go.

Pressure

Often it takes other people to help you realize your own potential. At least for me, it's easy to write myself off when I'm feeling really crappy. It can get exhausting constantly trying to talk myself up mentally and to overcome the negative and anxious thoughts that so often sneak in. I live with myself every day and pep talks in the mirror have lost a bit of their effectiveness after so many months of them. But I know that no matter how exhausting it gets I could never give up, not just for my own will to live, but because if I did concede defeat so many people would come ramming down my door and kicking my ass in gear. I wouldn't stand a chance.

This indisputable fact was again shown very clearly to me at a Glow Ball Tournament fundraiser that our phenomenal friends organized this past weekend. After an outdoor barbecue dinner, participants got to golf at a country club in the pitch dark with light up balls and glow sticks around their necks – fantastic.

The event's proceeds will help to offset our medical bills, lodging and travel expenses but what was taken away from the event goes far beyond finances. People so deeply care and genuinely want to help and that is continually humbling and baffling. Craig and I have been at this for a while now, but the support just doesn't waiver. When we get tired of holding ourselves up, our extended support group still displays exceptional endurance. I don't even know what to say to people in response to their stunning kindness anymore. "Thank you" doesn't come close to representing the gratitude that Craig and I feel. I wish there were a stronger phrase than the same one used when someone holds the door open for me.

Obviously having so many people looking out for us carries its own pressures. With a growing support group comes more and more people to succeed for, more and more people that I don't want to let down. It's bigger than me. Now I realize the place that I hold in other people's lives and see now more than ever how connected we all are. To me, this is a true gift that has come out of this. When I'm tempted to give up or when I begin to doubt what I'm capable of, I think of the two little girls who have donated their hair for wigs in my honor, of Craig's students that set up an afternoon lemon-AID stand to raise money for cancer research, of my family that loves me so much, of the friends that remind me consistently that I will end up on top of this. And not to forget, of Miss Sammy who depends on me for Pedigree and belly rubs.

Ya, I feel the pressure, but I wouldn't want it any other way.

Good News, Bad News

I did not get chemo today. Part of me is rejoicing at having gotten out of it. Another part of me is devastated at the reason why. Another part of me has the omnipresent dread that this means everything is going to happen faster. Again, that cancer world cliche comes up: "Take the good with the bad."

And this time the bad is not so bad and apparently it is not a permanent bad. Craig and I went into the cancer center today with the requisite snack and activity bags packed. I was wearing my sweats and slippers and carrying the lavender prayer shawl that I cozy under while I hold ice in my hands and under my feet. By all accounts we were ready for another chemo infusion. The night before we discussed that it was to be the 38th infusion of chemo in 17 months. That's a lot of rat poison.

Except for my usual anemia, my blood counts looked good. They've just started to ease downward so I certainly passed that test. It'll be later this week that I sink the lowest. However, the results of last week's pulmonary function test halted today's treatment. My transplant specialist at Sloan, Dr. Sauter, had ordered this test to have a look at my lungs and make sure that there weren't any signs of toxicity before pumping me with more GND. The test requires a series of inhales, breath holds, sharp exhales, long exhales, etc., done with a respiratory therapist.

Dr. Dailey informed me that the test portion that measures how well my lungs are able to diffuse oxygen into my bloodstream showed less than favorable results: 51% of predicted. This certainly explains why I am easily winded ... the oxygen can't get to where it's needed efficiently enough. This is obviously disheartening. I miss the other 49%. I was only in the 80th or so percentile when I had this test done pre-autologous transplant in April, showing that the Bleomycin in the ABVD regimen had already taken a toll on my lungs. Most recently, the Gemzar in GND can have the same toxic lung effects. This added insult to injury.

We waited while Dr. Dailey consulted by phone with Dr. Sauter at Sloan about what to do. It was decided to spare me any further damage and to pull the plug on this last infusion. Instead, the transplant date will be sooner. Get out the eraser ... again.

I'm happy about getting things moving I guess, but I'm not happy about this lung damage news. However, I'm told it's not a permanent condition. Once this is all over, my lungs, like everything else that has been damaged, will be able to rebuild. I believe it. I've been impressed over and over at how my body has been able to bounce back. Though I'm discouraged now, I know it's not forever and half capacity is better than no capacity.

So now I'm on the full-speed transplant train. This is actually going to happen. Next Tuesday I'll go back to Sloan for a marathon day of pre-transplant testing. Then, I'll head to the city again on Friday to see the doctor and go over it all. I could be admitted and starting the whole shebang by the week of September 27th. That's 12 days from today. This is pending any new developments of course.

The day has been a mishmash of emotions. I had to take an intense walk with some classic Dave tunes blaring to blow off some anxiety steam. I'm not sure really what I feel right now. Good? Bad? Indifferent? Yes. Yes. And, yes.

Must Be Time

Much of the aches have subsided, though the feeling that I have been recklessly clocked in the jaw overnight is still there to greet me every morning. The throat rawness and soreness has dissipated. My concentration is back–in fact, I had the focus to start and finish a 600-page novel this week (unbelievably rewarding to me). My energy levels have risen back to what I now consider my normal. It all sounds too good. This must mean it's time for another chemo whop.

Yes, indeed. Pending any huge drop in blood counts, the GND chemo will again be plugged into my port tomorrow and send me back into slow-man's land. The land where everything is blurry in mind and body and everything you try to do takes 12 times more effort: the sumo wrestling suit phenomenon.

Like a song stuck on repeat I again tell myself: "If it's making you feel like this, imagine what it's doing to the cancer ... ." Blah. Blah. Yada. Yada. In all fairness, outside of the immediate days following last Thursday's chemo I've felt pretty well. "Well" of course being a relative term. If my pre-chemo ravaged body suddenly popped into the picture I don't know that I've even recognize it.

Pretty under the weather this weekend, Sammy and I spent Friday night at my parents where we could be spoiled. We took my Dad's antique car to the Bethlehem Fair and enjoyed fried dough and apple fritters while donning hoodies in the suddenly cool fall night air. Breathing in the fresh, country air and licking my cinnamon slathered fingers did me good. Each day I grew progressively stronger.

The primary goal of the week has been to be outside as much as possible soaking in every last drop as if somehow I'll be able to revisit the wind, grass, leaves, and trees from the climate-controlled confines of my hospital room. I spent an extra-long time at our CSA farm Saturday picking edamame and basil under the warm sun. Eating, reading, writing are done outside until the mosquitoes set in. I like to think of myself as a solar panel absorbing and storing all the energy for later release as needed. But as that is a mere pipe dream, I've been taking pictures of our favorite places to walk and hike so that I can decorate my "home away from home" with them and at least visually transport myself.

With my counts and energy *high* I've been back in the yoga studio as opposed to practicing with my DVD. This has been strengthening and calming. As much as I've come to love yoga, I do miss balancing it with a good, sweaty workout. It sounds strange but I have this great desire to go to the gym, run on the treadmill, lift some free weights and just get real sweaty. I long for the kind of 5:30 a.m. gym visit that used to leave me with chest sweat and swamp bottom. Even better, I'd love to take a body pump class that would leave me with that old, welcome soreness. An ache in my body that meant it was recovering and building muscle, that it was leading me to be toned and strong, not the ache I feel now, which is an angry one as my body tries to heal and survive ... not thrive.

Before all of this I climbed the 3,100-foot summit of Mt. Monadnock without blinking. Granted, I'm not saying I was a Lance Armstrong by any means, but I never struggled with athletics and endurance. Now I sweat out drugs and toxins as I sleep. Now I break an unwelcome sweat not from purposefully pushing myself to, but from the simple act of carrying the laundry basket up the stairs.

Now when I sweat it's not adrenaline fueled, it's a pure biological function of my fatigued organs having to work double time. For now I guess I'll have to settle for a warm, post-yoga or post-flat- terrain-walk glow and be grateful for that.

If years from now I ever whine and complain about getting in a daily workout someone kick me in the gut. Someone remind me that at one time I had to inhale medicine out of a tube in a pressurized room in order to assure that my lungs wouldn't fail me. Remind me how I felt today when being out of shape wasn't a choice, but a sentencing.