Wednesday, September 29, 2010

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.

Thursday, September 23, 2010

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.

Wednesday, September 22, 2010


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.

Wednesday, September 15, 2010

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.

Tuesday, September 14, 2010

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.

Thursday, September 9, 2010

Moving Target

As soon as I think I have next steps planned, start telling my caregivers, begin pulling out items to pack, work on travel plans, and am about to send an e-mail updating my boss at work, it all changes.

When my sister and I were young and would travel to Cape Cod beaches with my family we had a strange little play ritual that still comes to mind every time I go to the beach now. We'd write our names or draw smiley faces with our toes in the firm, darkened sand of the ocean's edge. Inevitably, waves would crash and travel up the shore engulfing our writings and taking the granular canvas away with them. As this process repeated itself over and over, we'd sing into the ocean breeze: "Everything washes away when I'm trying to write it" in expert harmony to a tune we crafted just for to the sentence. That was the whole song – over and over.

This is what is happening in my life now, except instead of sand, it involves entering, erasing, editing and reentering appointment and travel dates into my iPhone calendar. If I was writing in an old fashioned date book, I would have long ago instituted a pencil-only rule.

On Tuesday, Craig, my sister and I traveled down to NYC for more Sloan appointments. I met with Dr. Sauter to go over my PET and CT Scan results in more detail and what they meant for **THE PLAN** and stuck my arm out in the clinic for further pre-transplant bloodwork. My sister had an appointment with a transplant nurse who talked with her about her donor duties and put her through a very thorough physical exam, a chest x-ray and an EKG of her heart topped off with lots of bloodwork. Twelve vials out of me. Thirteen out of her. It was a four-hour ordeal of us passing like ships in the night from oncology suite to oncology suite handed off like relay batons from one member of the medical team to another. Again, we always have to plan for the day being much longer than expected. Never leave the house without a snack pack.

To balance out the medical appointments with a fun reason to make the 3-hour trek into the city, we met up with my fellow cancer survivor friend and i2y Chief Cancer Anarchist, Jack Bouffard, to take in the Yankees vs. Orioles game in the new stadium. This is something I won't be able to do once isolation sets in ... especially the subway ride which involved us standing and rubbing buns with strangers of all sorts. It was a good
thing that my white blood cell counts were so high and that I had the Purell at the ready. Dr. Sauter was more concerned with who the Yanks were playing than me catching anything in a massive open stadium. It was only my second professional game ever and even though I'm a BoSox fan, it was a blast. When in Rome ... or New York ... .

We left NYC encouraged by the very favorable response I had to the GND chemo as evidenced by my clean scans. Some of my internal lymph nodes were still enlarged, but not showing any cancer activity. This is my body doing clean up and scar tissue developing in those stretched-to-the-limits nodes. There was just one tiny hot spot, less than a centimeter in the sternum area of my chest. It's been a stubborn area on all of my PET Scans. However, the GND (and I like to think my visualizations and exercise) shrunk it down more than 2/3 from the size it was on my July scan.

For protocol reasons my sister had to re-swab her cheeks and get further HLA typing bloodwork to make double sure that she is a DNA match. This will take two weeks to process. Her other bloodwork, which is checking for any viruses, will also take a few days for review. The plan was that in the meantime I would come in for another marathon day for body function testing – breathing, heart, dental, etc. Then, once we got the go-ahead results on my sister I'd be ready to start the transplant process. I was psyched to have two weeks when I'd have no treatment and would be feeling well. But at the same time, we and the doctor were fairly concerned with letting me go untreated for that long. With that timeframe it would mean that by the time I entered transplant it would be five weeks since my last chemo. We've learned that the cancer is quite aggressive and grew back in less than a month last time I was left naked of drugs.

Turns out that I don't need to worry about that. And, I don't need to worry about how I would spend all of that beautiful appointment/treatment-free time before the NYC move. Dr. Sauter called me yesterday to tell me that he discussed things further with the transplant team, specifically with Dr. Craig Moskowitz, a world-renowned lymphoma expert, and the conclusion was that they want to keep steady this very positive near-remission state that I'm currently in. Dr. Dailey was also conferenced with and agrees with the plan. It's just too risky to wait another week. It was reiterated that what I really need is my sister's stem cells to go after this. The GND chemo is merely a temporary Band-Aid to stop the bleeding.

So today, with half-a-day's notice, I was back at Hartford Hospital for my first infusion in the start of a third round of GND. Obviously I didn't want to go. In fact I was a very angry person this morning (poor husband) and literally had to talk myself down from throwing my ceramic cereal bowl across the kitchen floor just for the satisfaction of watching it shatter into pieces.

No one wants to go to chemo, but you do it because it is what is going to save your life. I was feeling so close to myself again: energy level rising, counts good, hair getting longer and showing some natural blonde highlights! The idea of feeling shitty again yet another time before I then feel shitty from the transplant for a very long time is not easy to swallow. But luckily, as the doctors keep telling me, I tolerate chemo "very well," which is why they're not hesitant to do this.

As long as I don't crash too hard from this infusion, we're shooting to do two weeks in a row of the chemo rather than the every-other-week regimen I had switched to so that we can keep the transplant start date sooner. This is expected now for the first week in October ("written" in pencil.) It's expected that I'll drop very low from this third cycle and will likely need transfusions but that's something that can be controlled. As "they" say: No pain, no gain, right?

Regardless, I completely agree with the decision of the Sloan doctors and it actually does put me at more ease to know we're proactively keeping things at bay – with the added hope of shrinking that hot spot altogether. I was actually very happy to get that call yesterday.

Now I'm dealing with wooziness, immediate achiness and fatigue, but the infusion today went fine. Craig kept me company and the sweet, sweet nurse, Anne, that I had the pleasure of working with today made a world of difference. So did the familiar faces and shared laughs with the secretaries and lab techs that I've gotten to know so well. I had already said my goodbyes to them weeks ago, but here I was, back again, just falling into suit. It actually put a lump in my throat. Quickly my anger simmered down and I was able to smile, very happy that we still have all 10 cereal bowls in tact.

Calm Before the Storm

Before I went in for my scans last week, we decided to get away. The anticipation of everything about to happen at times takes a toll. We're both home on medical leave and though I love our home, it's not so easy to relax here all the time. We needed a place away from the stack of medical bills and claims we are supposed to be going through, away from the laundry and cleaning, away from the stacks of reading material about "preparing for your transplant" or "living with cancer" and all the paperwork we are supposed to be filling out. I think this picture says it all. You can tell I've totally got things under control. Me vs. the glacial erratic.

We dug out a gift certificate we had been holding onto, decided on New Hampshire and picked a place in the lakes region: A Newfound Bed & Breakfast in Bristol, New Hampshire. I love New Hampshire. "Live Free or Die" ... right on. I went to college at the University of New Hampshire on the seacoast and have a special place in my heart for the state. Now the modest Newfound Lake has its own special spot.

Our room had huge windows with breathtaking views of both the lake and the vast mountains in the background. It was stunning to wake up to. It was humbling to watch the sun set into the ridgeline from the jacuzzi in our room. It was awe inspiring to marvel at the expanse of stars and wish on the shooting ones from the reclining chairs on the porch off our room.

We had just two nights and two days free with no appointments and knew that we had to take advantage. We were the only ones staying at the b & b and had run of the place. The best part? So did Sammy. She came along for the trip as well. The make or break b & b choice was that it was dog friendly. She was free to wander the house and chill on the porch with us at breakfast time. We wanted to show her a good time before we have to be without her for so many weeks (months?).

The innkeeper, Sondra, was phenomenal. She is a hip woman, I'd guess in her 40s, with a stylish asymetrical bob and a tattoo of a delicate fairy, which stretched from the nape of her neck to her shoulder blades. She was incredibly laid back and easy to get along with. We connected immediately. She lives in a converted red barn on the property but as it was mid-week she slept at her boyfriend's house – now that her kids were all in college, that was the arrangement they worked out, she explained. So we literally had the "compound" to ourselves.

She'd be back in the mornings to wake us with ridiculously amazing breakfasts. Lemon poppy seed muffin swimming in a orgasmic berry smoosh and crisped at the top to perfection, grilled bacon, warm bread pudding with a berry compote (fresh picked from the property), eggs benedict layered over whole grain English muffins with a sweet raspberry jam, garden fresh veggies omelettes with eggs from her chickens on the property and toast with a selection of spreads from homemade pumpkin butter to strawberry rhubarb jam. Let's just say we ate well. And it was all outside on the porch overlooking the scenery on beautifully warm summer mornings.

Though we were only away for two days it was a good taste of bliss and a perfect counter to the sterile, mundane routine of medical appointments and treatments that have been dictating our calendar.
The first day was spent kayaking in Newfound Lake – the fourth cleanest lake in the world (who knew?!) We brought Sammy with the bright idea of trying to get her to ride in the kayaks with us. Not so much. That girl just loves her freedom too much. We tried about a dozen times to get her to ride with us but at the first slip of a wet paw, which rocked the kayak, she was out of there.

Luckily, we had the foresight to buy her a doggy life jacket so that she wouldn't drown with excitement. As predicted she continually jumped ship and just wanted to swim next to us – swim her hardest to keep up regardless of how tired she was. She loves swimming so much she'd probably do it until she sunk. Just like chasing the tennis ball ... . We found a fantastic sandbar that she could bound around on leaving a huge wake behind her to give her doggy paddle a break for a while. Much of the day was spent "docked" here as we watched her beeline for duck after duck through the shallow water.

We brought back wet, muddy, exhausted Sammy to let her nap in the AC while we headed further North to the "Castle in the Clouds" in Moultonborough, New Hampshire, the turn-of-the-century homestead and property of a quirky, 5-foot tall millionaire and his 6-foot tall wife. Not that we saw all of them, but the 5,500 acres of the property were stunning and play host to 45 miles of hiking trails. My crappy endurance limited us to only part of one of the trails but we chose the one where we got to take in the beauty of the waterfalls from above. A trolley driven by a man that takes his job very seriously, calling into "dispatch" after every 15-minute loop he does all day long, took us up to the estate where we took in the "270 degree" views of NH mountains and lakes.

We got to tour the inside of the estate. The rooms were all staged with some of Tom and Olive Plant's shoes, books, grooming tools and skivvies and lots of dusty, plastic food replicas to make it look like they had just stepped away from the dinner table. Historic homes don't exactly do it for me. When I leave a place like that I tend to feel like I'm covered in a dusty film of sepia. I was much more taken in by the view and the property than the yellowed doilies, but to each his own.

Dinner was a chunky lobster roll with the perfect mayo slather and just enough celery crunch. We dined barefoot at a tiki bar picnic table overlooking the majestic Lake Winnepausaukee before heading back to the b & b to stare at the stars with a cup a tea then an 8-inch tall slice of layered strawberry ganache cake Sondra had baked for us. Did I mention that I gained back every one of the 10 pounds I lost during my last transplant? Per doctor orders, I'm packing on the fat reserves to live off of when I'm unable to eat again. Let me eat cake!

Day two we headed out to explore with the kayaks minus the furry excitement ball choosing to paddle on Lake Squam – the same lake on which the Katharine Hepburn movie On Golden Pond was filmed. Sondra offered to have her hang out with her and her dogs for the day. In fact, on our way back that evening we passed her in her pick-up truck with Sammy, her chocolate lab and her beagle mix with tongues out lined up along the seat next to her. They were on their way to a lake swim.

The views were equally stunning. I love being in the kayak because it allows you to explore the nooks. It allows you to pull over on a hidden beach and jump in for a cool swim, key in the 90 degree weather. A post-kayak coconut milkshake helped to cool the core as well ... for medicinal purposes, of course.

Mid afternoon set in and it was time to leave our bucolic escape behind and prepare for our trek to the concrete jungle that is NYC the next morning.

Sunday, September 5, 2010

Favorable Response

Not expecting to hear a thing until Tuesday and totally accepting of that, I received a call at 6 p.m. on Friday evening from my Sloan oncologist, Dr. Craig Sauter. Yes, a Friday night, and not only that, but he was in Michigan and just thought that I'd like to hear the initial news before entering the long weekend. This is a sign of a fantastic oncologist and most certainly reinforces my decision.

I had gotten my PET and CT scans only the day before but as I know from past experience, initial results are available nearly instantaneously, it's just a matter of whether anyone decides to share them. He cautioned that he does not have the final report from the radiology team, but that he wanted me to know that on initial review it appears I've had a "very favorable response" to the GND chemo. This means the cancer, or at least the vast majority of it, is gone. We celebrated with buffalo chicken pizza. I will find out more details on Tuesday, but this is fantastic assurance that everything I have endured and everything I've been working so hard at over the past few months has been worth it.

Now my sister is scheduled for her own donor appointment with the nurse practitioner on Tuesday. The ball is rolling. This is assuring, exciting, scary and unfathomable all at once. Like a circus artist, it feels as if I'm balancing on top of a rolling ball trying desperately to shift my weight and keep my footing as it changes speed and direction along this unpredictable course. I was stopped against a wall for a bit there, but now I'm again on the move.

The day of my scans, we took the 6:23 a.m. New Haven train into NYC after an hour drive from our home. I was tremendously tired and both eager and anxious for the test I had been "studying" for over these past weeks. The train was filled with CT to NYC commuters. Lots of iPad clutching, dry cleaner pressed business suits on board, all zoned into their normal morning routine. Though the train was jam packed, hardly anyone spoke, all of us getting our early morning bearings, adjusting to the light of another day and whatever challenges and opportunities it held.
Our day had its challenges: getting to step into one of the hospital rooms I will be living in and taking in how close the four walls really are, navigating the bus transit system, walking block after block on no food or fluids per pre-test orders, drinking more than 1,000 ML of pink oral contrast. However, it also had some huge opportunities.

To make the most of our trek in, we had scheduled a meeting at a possible apartment. Craig and some of our NYC familiar friends had been doing Craigslist and Google sleuthing for weeks to try to find a place for Craig to live in/rent while I am an inpatient for more than a month. This way he would not have to sleep on the oh-so-cozy looking pull-out chair in my hospital room with gloves and a mask on every night. It would also provide a place for my family to crash on the days that they come down to visit. As one just might assume, NYC rental rates are outrageous and the unknowns of my case makes it difficult to commit to a lease or a set timeframe. Could be 20 days. Could be 120 days.

However, we are not the first people to be in this situation and we found an organization that caters to people exactly like us and could not be more astounded with how ideally they function. Most appropriately, it is called Miracle House. We met the patient coordinator, Majo – a fantastically animated, sporty and witty Slovakian – at the high-rise apartment complex where the five three-bedroom apartments operated by Miracle House are located, just 3 blocks from Times Square. Though it isn't free (it'll be like a second mortgage payment) the nightly rate is the most affordable we could find and what comes with that rate actually brought us both to tears.

Majo is one of the nicest most comforting people either of us had ever met. To every question we had, his response was "no problem, we'll make it work." We don't have a firm entry or exit date. We don't know who exactly will be sleeping there on any given night. We don't know if I'll need to be living there after I'm discharged. It didn't matter. They will make space for us and providing a solution to those scenarios is why the organization exists.

Miracle House was founded 20 years ago with the caregivers of HIV/AIDS patients in mind. Patients were flocking to NYC in droves as that was the place to find the life-saving treatment that they needed. However, there was nowhere for their caregivers to stay that was necessarily affordable and safe – the last stress anyone needs when a loved one is faced with a catastrophic illness. Since then, it has expanded its mission to people traveling to receive any type of critical medical treatment in the city – a vast majority whom are cancer patients ... many being treated at Sloan for its world-class reputation.

We had found housing that will put patients up (like the American Cancer Society's Hope Lodge where we'll be likely be living after I am discharged), but nowhere that would put caregivers up without the patient there. The droves of research to try to find some kind of place that we could afford on top of everything else was taking a toll on Craig. Finding this place is a huge piece of the puzzle now in place. My family will have a furnished bedroom with a private bathroom and a suite style shared kitchen and living room with two other sets of caregivers. It's bare bones for sure, but all of the essentials are there.

It puts me at great ease knowing that those that I love so much will also be being taken care of. Not only will the Miracle House apartment provide a safe, comfortable place for my husband and our parents/siblings/friends to sleep, but they will also have access to all the complex's amenities, including a gym, pool, laundry room, theater, rooftop deck, etc. The pantry is stocked with go-to items provided by the organization. Volunteers take whomever would like to go out to complimentary breakfast every morning, dinner three nights a week, and Saturday brunch at a nearby diner.

Those taking part in the meals are people from all over the country/world and are themselves or have a loved one going through a difficult medical treatment. The purpose of volunteer facilitated community meals is for people to have others to relate to, laugh with, cry with, and lean on. There is everything from Reiki services to counseling provided free-of-charge to those living at Miracle House. Again, it is a Godsend and I hope that it will be healing for my family who is grappling with such a traumatic undertaking. We'll all be away from home and that's not easy.

I've said this before, but I think the job of the caregivers is much more difficult in these situations. I know how I feel. I know I can do this. I know what's going through my mind and what's happening in my body, whereas they have to watch and wonder as I go through my ups and downs pushing themselves to stay strong for me and to do whatever they can to alleviate my hurt. I can only hope that the Miracle House will allow them to unwind and bitch and cry about me without having me in earshot. Let's face it, I'm not always an easy patient.

Once that hurdle was crossed it was the 50-minute bus ride across Manhattan over to Sloan's Imaging Center for my scans. The facility was beautiful. Opened just a year-and-a-half ago it was bright, clean and modern. The waiting room was full of patients lounging in the couches and chairs sipping out of their clear plastic bottles of pink liquid which filled their intestines with dye to be picked up via whichever machine they'd be tested in.

For me, it's old hat, this being my sixth PET Scan in just 14 months. However, the process has been a little different at each facility. And, I was also photographed via CT Scan in the same machine. After a nurse accessed my port and injected me with the normal radioactive substance, I was left alone in a little room and given 45 minutes to drink the 1,025 ML of "Gastroview" to make the radioactive material visible. It tasted like raspberry Crystal Light. I cuddled up with the fresh-from-the-warmer blanket they gave me and started reading The Girl With the Dragon Tattoo.

The nurse came back to get me and I was led into the scanning room. I climbed onto the familiar narrow cradle and took in the tunnel ahead of me with a deep breath. I laid on my back under a blanket, my madras skirt at my ankles so that its metal snaps wouldn't affect the picture. On the ceiling was a huge, round hand painted treetop scene that made it appear as if I was laying under the beautiful green of a tree and looking through its leaves at the sun.

More injections came through my port which filled my body with heat and made me feel like I wet myself ... a side effect they always warn about. Then, arms interlocked above my head and my legs dangled over a pyramid shaped bolster, into the tunnel I went. For 25 minutes the machine whirred around me. After just about three of those minutes I was sound asleep and woke up to the jolt of the technician's voice over the speaker:

"Just a couple more minutes. You doing okay, Karin?"

"Yup. I am okay," I replied.

Not only okay, but feeling ready for the next step.