So Many Tigers

I originally learned of this Zen story from a friend who shared it in her blog. I now think about it all the time. Nothing speaks truer to how I am feeling right now, so I will let the tale give a little insight. A few unexpected new tigers have emerged in my life – tigers that I once thought were strawberries I could grasp onto for hope and support. Each new tiger brings a pack as everything in my life and my treatment plan is so interdependent. I see a lot of yellow eyes and baring teeth focused on me right now while I dangle here on a vine awaiting answers. 

Tomorrow, I will be sucking strawberries when I finish my PET Scan and await my meeting with my doctor, ignoring the ridiculous amount of tigers and gnawing mice around me at the moment. Because what the hell else can I do?

“There is a story of a woman running away from tigers. She runs and runs and the tigers are getting closer and closer. When she comes to the edge of a cliff, she sees some vines there, so she climbs down and holds on to the vines. Looking down, she sees that there are tigers below her as well. She then notices that a mouse is gnawing away at the vine to which she is clinging. She also sees a beautiful little bunch of strawberries close to her, growing out of a clump of grass. She looks up and she looks down. She looks at the mouse. Then she just takes a strawberry, puts it in her mouth, and enjoys it thoroughly. Tigers above, tigers below. This is actually the predicament that we are always in, in terms of our birth and death. Each moment is just what it is. It might be the only moment of our life; it might be the only strawberry we’ll ever eat. We could get depressed about it, or we could finally appreciate it and delight in the preciousness of every single moment of our life.” ― Pema Chödrön

(c) takumy.deviantart.com

Coping Mechanisms

Breaking Bad as therapy?

I’m sure everyone lives their days following receiving traumatic news a little differently than their ordinary days. For me it’s been a combination of research, crying, e-mailing, sleeping, reading scientific studies, reading gothic novels, watching violent TV shows, more crying, more reading, more corresponding, more research, and perfecting my drug dealer voice: “Slinging ICE on the streets, yo!”

What does this all mean? It’s been my survival pattern as I’ve eased down from the initial shock of my surprising scan results and moved from “What the F?” to “Holy F’in S” to “S just got real and I’ve got to get it together.”

No, I’m not slinging ICE nor cooking glass, but oddly as it sounds Craig and I have gotten totally swallowed up by the AMC show Breaking Bad. We started with Season I on Netflix and the drama of watching a high school chemistry teacher get wrapped up in cooking and selling Crystal Meth to pay his medical bills and provide for his family, while dealing with inoperable lung cancer has been the perfect distraction. It’s an incredibly written show.

At least I don’t have to dissolve dead bodies or walk around a grocery store naked to get myself hospitalized so my wife won’t wonder where I was (which was dodging bullets from a drug lord in the desert). This is what I mean when I say I’ve been practicing my punk dealer voice. It makes Craig and me laugh when we pretend to be badasses and the show totally engrosses us. Way better than thinking about our own crap.

It was raining for three days straight. The weather shared in my misery. The dreary darkness certainly didn’t do anything for my spirits. It’s been difficult motivating myself to get out of bed each morning and for a few days there was difficult to even speak without my lips quivering and the tears starting to fall.

I’m suddenly very achy and very tired. My mid-back and lower back are sore and angry and the muscles in my neck and shoulders are in knots. I’m pretty sure that it’s more stress related than cancer related – the fatigue especially. Taking this all in is just exhausting.

I did get myself out of the house to the town library where I brought a totally transporting book we’re reading for book club and a pumpkin spice latté (soy, no whip). I cuddled into a comfy chair and ottoman by the window and watched the rain tousle around the dried, colored leaves and just read – for several hours – until I finished. It was glorious.

After putting some feelers out to the medical world I’m exhausted further, but I’ve got some good leads for possible treatment options to explore. Things are cooking:

• I landed an appointment on Monday with the famed “Dr. O” (Owen O’Connor at Columbia in NYC) and am eager to hear what he thinks may be an optimal treatment plan. He is always buzzed about in the Hodgkin world for his expertise in novel treatments for refractory patients. I saw him last spring and am eager to reconnect.

• I also have connected with some doctors at the National Cancer Institute in Maryland through a friend, and they are exploring my eligibility for a possible clinical trial there that involves radiation and a DLI which I’m very interested in.

• Dr. Moskowitz talked to Dr. Anas Younes at MD Anderson for me (another big wig in the Hodgkin world) and he has a trial in Texas for me but also agreed with trying the Phase I trial of PU-H171 at Sloan-Kettering, which I’m slated for initial consult on in three weeks.

• A research doctor at Seattle Genetics (the makers of SGN-35) – whom I connected with a couple months back through the help of my buddy Ethan Zohn to talk about my lung issues as an SGN-35 complication – is now looking at my current status with his team to see if they can come up with anything.

• I’ve received lots of e-mails with offers for referrals, advice on treatments, and links to clinical trials. For that I am so grateful and am still working on weeding through it all. 

More importantly than all the medical leads was the outpouring of e-mails, blog comments, and Facebook messages I’ve received since Monday that filled the hole in my soul. I am so grateful for the kindness of my friends – close and distant – and from the perfect strangers who took the time to tell me how much they’re rooting for me and how much my story has meant to them. It’s messages like those that keep me moving forward. Sure, many of the heartfelt e-mails I got added to the water works, but they were sentimental tears, not tears of defeat.

Today the sun came out and I finally gave in and let my mom and sister come take me out for lunch and a hike. We took Sam to her favorite place: Nod Brook Wildlife Conservation Area and enjoyed a nice walk in the unseasonably warm weather taking in the foliage of Talcott Mountain in the distance.

The tears are less frequent and I’m starting to smile again. Craig and I laughed a lot last night scaring each other with fake finger guns and making up stories about how the dilapidated blight-of-a-house on the end of our street is most definitely a meth lab.

It’s funny the strange things we (I) do to cope, but it doesn’t really matter what they are does it, as long as they help us out of our funks. I think I’m on my way. I’m still just very, very tired.

Settle Down, Girl

Monday is another PET Scan day. I’ve been on a schedule of one every three months. That means that once every 90 days I have a particularly rough week of worry, worry, worry leading up to the test. I’ve written about this many times before, but scanxiety is crushing and warrants some attention.

I try to get better at handling it, I really do, but the worry surrounding the unknown has a way of taking over. Remember getting nervous about a big math test in elementary school or a presentation you had to make to your classmates about Mesopotamia in eighth grade social studies? Well, take those stomach butterflies and instead imagine a sanctuary of them flitting around in your belly not because you’re worried about your grades, or if you’ll pee yourself in front of the class, but instead worry over whether the killer inside of you is on the loose – again.

I just want to know the results so we can have that data to make the most informed decision about next steps. I hate not knowing. I hate that the PET Scan results are so finicky. I hate the crazy thoughts that creep into my head: “It’s spread to your brain … it’s pressing on your lungs … it morphed into a deadly new strain we’ve never seen before … your left ear lobe will fall off.” They’re silly and unfounded, but happen nonetheless. They come mostly in the form of nightmares, though sometimes derail my thoughts during the day pushing me to tears or to a ball on the couch not wanting to talk to anyone or do anything. Luckily, I’ve been busy living life, so I haven’t conceded to the beckoning couch (unless it’s happily snuggled with Craig and Sammy watching Honey Boo Boo Child shake her belly fat).

As they say, patience is a virtue, but does the virtuosity have a cap? Having to be patient in life-or-death situations like this for more than three years now is getting a little old. F patience. The real virtue is that I have the opportunity to get this test done. I am still here to be able to lie once again in that whirring tube. To have my patience tried in the meantime just comes with the territory. I need to remind myself how grateful I am to be here and to have the technology at my fingertips to most accurately assess the state of my disease. Not everyone is so fortunate.

I’m trying to stop hypothesizing because it does me no good. I’m a very forward thinker, I’m an idealist, but also logical, and I like to string things together to solve a problem or make a prediction. Most of the time this serves me well in figuring out complex scenarios (especially medical ones), but sometimes my tendency to do this is what drives me to insanity. I need to just let it go and let it be. Whatever, man (said in stoner voice). I work on that one all day, every day.

I feel better than I ever remember feeling going into a PET Scan. [My therapist tells me that I’m supposed to stop there, to be content with that and not trouble myself with what that may mean]. But, remember, I like to connect things. I’m a figure-it-outer. So I create scenarios:

• I’m feeling pretty normal and pain-free so maybe that means all the cancer is gone, that I’ll have a completely clear scan and totally shock the medical world. I’m feeling this well even without the high-dose steroids I had been on, which reduce inflammation, hold back Hodgkin’s growth and give a false energy boost. That must mean something good. 

• However, I’ve been told by some docs that I’ll always have scarring on my bones from all the damage which will prevent me from ever having a squeaky clean scan. What if they keep treating me and it’s really not cancer at all, but just residual clean-up showing up as inflammation on the scan results?

• But, then again, maybe I just want to think I’ve been feeling well when in actuality I’ve been incredibly fatigued and my mid-back has been a little sore, so maybe the cancer is trying to creep around on my spine again.

• But, I did just join the Y and have taken a couple Zumba classes that may be tiring me out.

• The anxiety exhausts me as well – I’m probably just wearing the mental and emotional fatigue physically. 

You see? All of that hypothesizing is exhausting. I can’t figure it out. Nobody knows the answers. I just have to wait until Monday in Manhattan when my team and I can look at these pictures for some clues and direction.

Here’s what we’re looking at:

• Has the inflammation in my lungs reduced after this long steroid course? Does this answer the puzzle of whether the inflammation is exacerbated by the SGN-35 infusions? I’m down to 5mg of Prednisone now. Occasionally I have a cough, but I believe it’s more related to the nasty cold I had over the past two weeks, which I’ve finally kicked. Does this mean my lungs will be okay?

• Are the minimal sites of disease stable? Reduced? Growing?

• Any new areas of disease involvement?

• Am I cancer-free enough to be able to move forward with a Donor Lymphocyte Infusion (DLI), which would give me a booster of my sister’s Natural Killer Cells? Do I want to do this and risk the possibility of Graft vs. Host Disease manifestations?

• Do I continue with more doses of Brentuximab Vedotin (SGN-35)?  If so, I’ll get one on Monday after we make a decision based on the scan results. 

Maybe you can understand why awaiting these results makes me mildly bat-shit crazy if I let it get to me. Fortunately, I have another wedding tonight for one of my very special longtime friends, Thea, where I’ll get to eat and dance the night away in celebration of her, in the company of some of my very favorite people in the world.

I’ve had Philip Phillips singing on repeat in my head this week and was reminded that my sister-in-law, Rachel Diamond (I have to use last names as now I have two sisters-in-law named Rachel!), told me she thought of me when this song first came out. It's become a little mantra now:

“Settle down.

It’ll all be clear.

Don’t pay no mind to the demons,

they fill you with fear.”

Okay, Phil. Let’s do this. Take me home. 

Life is Full

My professional waiting-painfully-long-in
-medical-exam-rooms-for-news face.

I have many notes and seeds for blogs ready to burst. But I've been so busy with wonderful adventuring that I have not had the time to write. Instead I've been out living and collecting wonderful stories to be able to relive again when I get to writing them. This is a wonderful position to find myself in for a change: my life has been rich and full, eye opening, and transformative over the past month.

I lived in NYC for two weeks and experienced Manhattan to the fullest. I received highly targeted radiation to the two problematic areas of cancer growth on my vertebrae and the large area on my sacrum every morning at 8:30am for 10 days. Overall, I felt very well during it, and things went smoothly except for one comedicaly outrageous debacle on the second-to-last day (full blog worthy).

My esophagus is very irritated from the treatment, but besides some deep achiness that's the only thing that's lingering. I'm told it is temporary. More importantly, I had a PET Scan yesterday to check on the other small areas of lymphoma involvement that we have not been addressing while I received radiation to focus on the immediate problem areas. Well, remarkably and unexpectedly, just two days after wrapping my rad sessions, the scan revealed that the three big, scary spots are ELIMINATED!! All that is left are tiny flecks showing divets of where the cancer cells were once collecting.

We were all shocked looking at this scan in comparison to my last. The radiation immediately took care of the problem and my bones are now free of danger and the major pain gone. This is an incredible feeling – a literal weight off my back. Not surprisingly, the small areas of lymph node disease involvement in my chest and in my abdomen are a little hotter on the scan with some new spots creeping in, and I am experiencing some symptoms of this. We are formulating a plan to get those back under control with a next course of treatment.

Overall, it's a very good report for my circumstance. I suppose this is what disease maintenance means. My life of late has been full of good food, culture, weather, parks, tons of walking, clearheadesness, happiness, drive, clarity, and wonderful experiences of both Karin time and close friend and family, husband-and-wife time and love. After some convincing and treatment plan tweaking, my wonderful medical team at Sloan-Kettering gave me clearance to travel as planned. As long as nothing crazy happens between now and then, on Wednesday, Craig and I jet set for a childhood friend's wedding in Malibu, CA. After the weekend in LA, I will fly to – finally – see my sister (my life blood) in her Las Vegas environment. My parents and brother will be flying out as well, and we'll spend the week touring the mountains and deserts of Nevada ... and the crazy Vegas strip ... as a family. It will be wonderful. I look forward to lots of blogging in detail when I get back. I have many stories to tell from the past few weeks.

Less Stuff

We don't have the radiologist's read on yesterday's PET Scan report yet, but upon initial review, Dr. M says that it looks "overall better." She said that the radiologists will describe it more eloquently with their write up, but joked that her official summary is that "there is less stuff."

Less is more for sure.

She pulled up yesterday's PET Scan on her computer next to last month's picture and walked my mom and I though the comparative intricacies. Most all of the spots of concern have reduced in size or been eliminated. There are a couple spots that look more enflamed, but the many more spots that are less prominent outweigh those, giving me an overall improved report.

We did a lot of smiling, laughing and rejoicing. Any positive news is a big step forward and warrants some celebration. It's been a long time since I've had a PET Scan report lean toward improvement; it is such a relief. Anything is better than hearing that things look worse.

My case will be presented to the entire Sloan-Kettering Lymphoma Board at their meeting next Wednesday. This team includes all of Sloan's lymphoma gurus and specialists – including Dr. Sauter who will bring in the transplant perspective. They will look at my most recent sets of scans to try and determine what might be happening inside my body. They will also listen to Dr. M's presentation about the several continued treatment options we discussed and will offer their thoughts on the best course.

This team approach is why I chose to have my care performed at Sloan-Kettering. Having the details of my case again reviewed from many possible angles at this critical point will be key. Each doc brings his or her own background in research and patient experience, and I'm so fortunate that my case will be at the center of next week's conversation. I wish patients were invited to these meetings. I'd like to sit at the head of the table, listen in, and take furious notes.

I'm eagerly anticipating the call Wednesday or Thursday with further thoughts on what my scan means and what my future options are. Until then, I'll be enjoying a few days of freedom and will continue riding this wave of positive news.

Another Pet Scan Lead Up

Tomorrow I travel to New York City for a PET Scan and a meeting afterward with Dr. M. It's been eight weeks since my last PET Scan – a rushed, unplanned scan in response to the severe pain I was having. That last scan showed a couple of new areas of likely disease involvement and increased SUV levels (hot spots) in the confirmed areas of disease in my hips, vertebrae and sacrum. It's probable – but not confirmed – that these hotter spots are lymphoma growth, but those hotter spots could also be my new immune system bursting into action and going after the Hodgkin cells in my bones. There is not an easy way to know. My medical team and I have a lot to talk about surrounding this debate and hopefully tomorrow's scan will provide some positive, tell-tale talking points to work with.

Eight weeks is actually a long time for me to go without a scan these days. I could vomit I am so nervous and on edge about it. Over these eight weeks I've gotten five infusions of Vinblastine chemotherapy. It was rough and tough on me and I'm hoping it was just as rough on the flaring areas of disease and everything has melted as hoped. These eight weeks have also brought a lot of random flaring, itchy rashes and disgusting amounts of strange white textures in my mouth. GVHD? It's not the scan itself I'm nervous about, the process couldn't be easier. What I am incredibly nervous about is what it will show and what that will mean for my future. I keep telling myself that I can't worry about what I don't know. Let. It. Be. That's much easier to write then to put into practice.

Craig has been integral in keeping me sane this week with positive distractions. It's probably the sanest I've been yet in the week before a scan. We've had a few date nights: went out to dinner, watched a movie, cooked meals together. Tonight he is taking me to a concert by an a cappella singing group that performed at his school with a promise to introduce me to the Fro Yo heaven that is supposedly Pinkberry. He loved it in Manhattan, but I wasn't allowed to eat there due to my dietary restrictions. Tonight at the new West Hartford franchise I will douse myself in dispensed flavored yogurt and fresh fruit toppings galore.

My mom will make the trek into the city with me tomorrow to make sure that I stay vertical, have a shoulder to lean on, and actually show up for my appointments. We'll catch the last day of New York City's restaurant week so hope to be able to take advantage of that and maybe a museum visit afterward. I'd like to check out the Whitney. We'll see. I'll either be in a really bad mood or a really good mood after the morning's appointments. Either way, time with my mom, the city's energy, good food after pre-test fasting, and art will probably help remedy the situation. But in reality, the entire day will probably be shot at Sloan.

This is a major crossroads. Images of standing in the woods at an exaggerated fork with six different paths to take keep haunting my dreams. If the scan shows this, then it may mean that. If the scan doesn't show this, then it does mean that. If the scan does show that, then it definitely means this. If the scan shows that but not that then this is probably, maybe, the direction we should go ... possibly. Or we could try this or that or this or do nothing or you're screwed, it's over.

Ugh. I just hope to get through tonight and tomorrow without totally getting lost in it. There will be some answers (or at least a clearer look at options) after I get through tomorrow. There is an inherent nausea and shakes that accompanies the wait for the doctor to come in the room to tell me about scan results. I can usually tell by the doctor's body language in a matter of five seconds. Then, it's just waiting to see how they will choose to make the delivery. I like it done fast: good or bad, rip the news off like a Band-Aid, please.

I've long stopped making predictions. I'll be happy with at least stable disease presence. But, I'd be even more elated if I get a coveted clear report.

Worried-about-trying-not-to-worry face

Painful Signals

“You are extremely anemic,” Dr. Moskowitz said as she pulled up my bloodwork results on her computer. She looked at me with great concern and it seemed that all the symptoms I had been describing since the beginning of our Dec. 13 appointment came together and made sense. 

My pain had gotten to be extreme, waking me up writhing in the morning, preventing me from sleeping, or worse, the gravity of it waking me up in the middle of the night. It would throb and seethe mostly in my right hip – a pain that emanated from deep in my bones yet would spasm through my pelvis and upper leg. It brought me to tears and it forced me to take some of the pain medication from the bottle I had from my transplant procedure. I called my parents the night before this regular check-up at Sloan-Kettering. I knew that I wouldn’t be able to handle the train and I needed a ride in. My parents were happy to oblige – my father’s first time driving into Manhattan – and I was able to stretch across the back seat with a blanket and pillow alleviating the pressure on my painful sitting bones.

My mom and I went into the appointment and the doctor asked her customary, “How are you feeling?”

“Um, okay,” was all I came back with, knowing that my eyes said it all.

“Oh no,” Dr. Moskowitz said in her sweet voice. “What’s the matter?”

Tears started to well and I hardly had the strength to hold them back. I told her how exhausted I’d been, how I had had some kind of upper respiratory infection, which really knocked me down, how I’ve felt some lymph nodes, how I’ve been having the worst pain of my life.

I couldn’t even finish the list. My mom stepped in and told her that things have been very difficult lately, that I lost my mother-in-law, and that I was very tired, angry, and frustrated.

Dr. M listened quietly in her thoughtful way and though she kept professional, I could see that she was breaking inside too. She’s young, no more than a few years older than I am, and because of that, we have a special bond with each other: two young women facing this Hodgkin’s puzzle together.

She told me that my low RBC count would require two units of red blood cells. My numbers were so low that the transfusion couldn’t even be given in the regular day hospital. I would have to go to Sloan-Kettering’s Urgent Care Center … and would I want an ambulance ride there? She even laughed herself at that request knowing how I always walk, always, and how she teases me that I do more hiking and yoga than she does. I’ll ask her about my exercise regime and she’ll say, “Should I be doing that?”

After a continued exam she was concerned about how gaunt and tired I looked. She felt some little lymph nodes in my neck and underarm but said that they were nothing remarkable, and likely could be reactionary, like anyone’s. But I could tell she was concerned. And she was not going to let this pain go unchecked. She worked to get me an emergency PET Scan the following morning. The plan was to send me to Urgent Care, wait for the units of blood then admit me as an inpatient so that the doctors could explore what was causing such a loss in red blood cells. For my count to halve in just a week was not acceptable and was cause for great concern.

I was so comforted to have my parents with me because the added concern of anemia on top of the worries I had come into the appointment with led to sheer exhaustion. Had I been by myself I may have just crawled into a ball and curled myself in the corner. They helped me get from building to building and into that dreaded Urgent Care center where the sickest of the sick cancer patients hang out.

I didn’t understand it. I knew I wasn’t feeling well, but I hadn’t felt as dizzy or debilitatingly fatigued as my numbers were showing. Just the day before, I had hiked a mile uphill with Sam Dog to our lookout. The Urgent Care nurses drew a type and screen match for the blood and we knew it would be hours before the blood bags came back from the bank. Then, each bag would have to run over the course of two hours. We were in for the long haul: I on a metal stretcher with a mattress worthy of an ironing board pad and my parents jammed into uncomfortable chairs in our little curtained cubby with extreme patient scenarios all around us.

The Urgent Care doctor came in spouting concerns about what my low blood counts could mean and told me that they would have to admit me and hold me until they could figure out what was going on: an internal bleed of some sort? This was terrifying. He told me that they secured the first PET Scan of the morning to check into the pain that brought me there in the first place. Equally terrifying – but assuring to know that we were looking into what I already knew was going on. The Revlimid wasn’t working. To me it was so obvious that my body was having a Hodgkin Disease flare. It’s a very distinct feeling. There is a certain chills-like tingling that I feel throughout my body and my fatigue becomes a heavy blanket wrapped far too tightly. It slows everything from my cognitive function to my walking stride.

I would have to be admitted into the hospital. They were working on securing me a room. As much as I persisted otherwise and promised that I’d stay in the city, that I’d come back first thing in the morning to get my PET Scan, the doctor was not having it. Can’t I just get the units of blood and leave? Why do I have to stay overnight just to get a scan? Please, let me go. I didn’t have a chance. They couldn’t leave me unmonitored with such anemia. They needed to find the cause of the blood loss. The idea of a night in the hospital was mortifying.

I changed into the requisite hospital Johnny and curled up with the paper-thin pulpy blanket they provided. Those Johnny gowns couldn’t be thinner if they tried and they always hang at the perfect length for the chest pocket opening to be right at nipple level leaving my booby the chance to unknowingly peek out. The “sleeves” never button up right and the back ties either slip apart at the most inopportune times or knot up so tightly that it takes some patient Girl Scout ingenuity to get out of the thing.

I endured more needles and blood draws and begrudgingly rolled over for a rectal exam, the lubed and gloved fingers of a stranger entering me and searching my bowels for a sample of stool or evidence of an intestinal tear. I had no strength and the feeling of defeat that once again I was to be poked and prodded like an animal was disheartening. I locked eyes with my mother with a look of pain and longing to be anywhere but there.

More time passed and my mom persisted with the nurse that my Complete Blood Count (CBC) needed to be rerun. That had been Dr. Moskowtiz’s request as well and we all assumed that it had been done. But when questioned, for some reason this had never been ordered. After some push, the doctor and nurse in charge of my care agreed to ask the lab to recount my blood levels. We were still waiting for the bags of blood from the bank anyway. I also still couldn’t eat in case by chance they had to do a test that required fasting. It was the evening by this point.

A few minutes later, we heard the ER doc on the phone at the command station saying: “I can’t believe it. I’ve never seen this before.” He pushed back the curtain to the cubby where my parents and I camped and told us that my red blood cell count was 9–far from the 5 that had registered earlier that morning. I was still slightly anemic, but that was normal for me. In fact, I was nowhere in the danger zone. The ER doc, with his heavy Russian accent, told me that Dr. Moskowtiz was on the phone and wanted to speak with me. I shimmied to the central nursing station in my non-slip socks with my fleece zipped over my risqué hospital gown and leaned over the counter to grab the phone and chat with her.

She was shocked and so apologetic that it took them so long to identify this issue. She was under the impression that they had verified the numbers hours earlier. She explained how rare it is to have just one number be out of whack – how if a sample is faulty, usually all the blood counts are unmistakably incorrect. At this point, all I was concerned with was getting outta there. She confirmed that yes, I wouldn’t have to stay overnight in the hospital, but that I would need to return in the morning for a PET Scan. Even though my blood cell levels were decent, I was still having Hodgkin symptoms and a lot of pain.

My parents and I were able to secure at room at one of our old stomping grounds, the Miracle House, and we spent the overnight in the city, unplanned. The organization and the accommodations they provide truly live up to the “Miracle” name. My parents were troopers. We visited CVS for essentials and a diner for a late dinner of French toast and hydromorphone for me. I slept no more than two hours. I was up all night tossing and turning with pain and worry. Half a book and episodes of Conanand Seinfeld couldn’t make it go away.  

We were up and in a cab crossing through Central Park from Hell’s Kitchen to the Upper East Side by 7:30am. Fingers were crossed that my PET Scan appointment was kept for me even though I wasn’t an inpatient as it was initially booked. There were no problems. It wasn’t until I was in that scanning tunnel, arms overhead and rolls of towels tucked alongside my head so that I wouldn’t move that then I fell asleep. I was overwhelmed, exhausted but comforted by the heated blanket they draped over me before starting the test. It’s a sad testament that the whir of a PET Scan taking 3D pictures of my body was this adventure’s magic sleep trigger.

I got a call from Dr. Moskowitz that evening. I listened and took notes on a scrap envelope at our kitchen island. Craig stood by reading over my shoulder. I wrote:

Lymphoma is growing.

Obvious Revlimid not working as we hoped it would.

Areas on right hip, sacrum, and vertebrate lighting up more significantly.

New hot spots in pelvis, left hip and abdomen.

This is cause of pain.

It is in my bones and on my bones.

Don’t start 2^ndcycle of Revlimid pills.

Stronger chemo needed to melt disease.

It won’t cure me, but will get things under control - will make me more comfortable.

Start prednisone steroid immediately.

I knew. I could feel every bit of it increasing in anger, flaring against me. I knew that the war inside was getting heated.

[   “It’s been a long December and there’s reason to believe that maybe this year will be better than the last. … The smell of hospitals in winter and the feeling that it's all a lot of oysters, but no pearls. If you think that you might come to California, I think you should.” – Counting Crows   ]

So we did.

Scan Storm

Two days after getting my less-than-desirable PET Scan report, we lost power at our home in Connecticut, along with just about everyone in our state. We had no heat, hot water, lights, internet, cable, or electricity. We remained out of power for 7 days. There are still 45,000 customers out of electricity here in Connecticut and I feel greatly for them: the scenario can be quite frustrating. The timing of it all was impeccable because for Craig and me, it actually provided a very welcome distraction from the realities of the news that I got. 

We spent the week in the comfort of neighbors' company with unexpected sleepovers, rotating dinners among all of our houses, lots of laughs and indoor camping. I got good use out of my long underwear and all of our blankets. It was confirmed once again that we have the best friends, neighbors and family. 

Lights out pizza party 

After a long day of doctor meetings at Sloan-Kettering on Friday, Craig and I came home to the beckoning beam of our driveway floodlight and the sound of our neighbor in our basement rewiring the electricity from our generator to our main switchboard. We came in to the heat pumping from our pellet stove and the house whirring with that buzz we all take for granted. It was glorious to be able to sleep upstairs in our bed for the first time in a week, rather than bundled on a couch or air mattress. 

The symbolism of it all was kind of eerie. The plug was pulled out of me for a while there, but there is still light. Yes, there is the dark light of hot spots on my PET Scan, but there is also the promising light that is new experimental drugs and a lymphocyte boost. All of that light came flying at me violently twelve days ago when I first learned the news. My friend Meredith's mother, Julie, generously drove me into Manhattan and killed time while I endured my PET Scan then went to meet with Dr. Sauter to go over the results right afterward. 

He walked into the room and said: "How's your back feeling?" and proceeded to rub the middle of it asking me if it was sore. I knew immediately what that question meant. He informed me that there were some hot spots on vertebrate on my spine, two new lymph nodes lighting up in my right chest, and that the spot on my right hip/sacrum had grown more prominent since my last scan. In short, it looks like the lymphoma is on the rise again despite my new immune system.

The good news is that more tests confirmed that I received a perfect graft from my sister and now have a fully functioning immune system again. I am completely off of immuno suppressant drugs. Her cells are within me thriving and doing wonders for me, as evidenced by how well my foot has healed – I am walking and hiking and working out on it. However, the graft between us was so perfect that her cells are in there living lovingly and comfortably. This is why I have not had any Graft vs. Host Disease symptoms: my sister’s cells and my own body have synced together seamlessly – everything that we hoped for, a rarity of beauty. Unfortunately, that also means that my body has not gotten the desired Graft vs. Lymphoma effect.  

The words swirled as Dr. Sauter pulled up my scan and we looked through it together, taking a 3D tour from my brain to my pelvis. I was doing my best to hold it together until he reached out and gave me a hug and I lost it.

I looked at him and said: “But I was supposed to go back to work on Monday. What am I supposed to do?” It was the first time that I have cried in a doctor’s office. He gave me tissues and we took some comforting breaths together. I think it was as hard for him to deliver the news as it was for me to take it. Understandably, we’ve grown close over all of this and he wants nothing but the best for me. He had been so hopeful along with me, but admitted that he was more worried every time he saw me and saw how well I was doing.  Ironically, from the allo transplant standpoint that wasn’t really a great sign and we both knew it. From a quality of life standpoint, it’s been fantastic.

So, forward we move. Craig and I went back to Sloan this past Friday to further discuss options and realities with Dr. Sauter and also with Dr. Moskowitz, my lymphoma specialist there. Between their two incredible brains, we will find the best next step. They each spent so much time with us going over the science of it all and the goals, possibilities, and statistics. I am incredibly fortunate to have such kind, compassionate and smart, smart doctors in my corner. I am now again held in the care of both of them and my case is being brought up to the lymphoma and transplant teams to pick the brains of all the Sloan-Kettering oncologists in those specialties.

The whole situation is confusing and disappointing. I’m very sad and have not yet decided what path to take at this huge fork. More research and contemplation is needed. I want to make the best decision for my survivorship. The first step in that research will be a surgical biopsy tomorrow at Sloan. They will be performing a CT-Scan guided biopsy to extract a piece of the bone in my right sacrum to be analyzed by the pathologists. My doctors and I want to confirm the enemy that we’re working against here. Clinically, it is presenting like it is Hodgkin Lymphoma again, but there is the chance that the cancer could have morphed into Non-Hodgkin Lymphoma … or something else. It has been more than a year since my last biopsy and I’ve had much treatment and donor transplant since then so it makes sense to check.

Pending the results of tomorrow’s biopsy, the vague proposed plan is to endure a few cycles of another treatment drug that I have not yet tried – hopefully a targeted therapy that will leave me with minimal side effects. There are still a few drugs that I haven’t tried and new ones are on the horizon all the time. Once it’s determined that I’m in a more sufficient remission from the disease, we can try what’s called a Donor Lymphocyte Infusion (DLI). This will be a super booster injection of more of my sister’s lymphocytes (a type of white blood cell that fights disease).

The DLI process would be as easy as getting a blood transfusion, as my blood is now her blood. However, my body will always be my body and therefore foreign to her cells. The purpose of this DLI will be to push my immunity balance over the threshold and essentially force my sister’s cells to go after the lymphoma. Unfortunately, my body will be the collateral damage as we essentially force Graft vs. Host Disease on me with the intention of keeping it mild enough to be treatable, but aggressive enough to ramp up the allo transplant effect. For the most part, the undesired Graft vs. Host Disease and the desirable Graft vs. Lymphomia effect run in parallel. There is risk, but also promise, to the procedure.

In the words of Dr. Sauter, I’m a great patient, but I just have a very bad disease. Fortunately, there is nothing that is of immediate danger to me and that means there is time to consider my options, or even wait to make a move if I choose to do that. I feel good, considering, and I’m very resistant to not feeling well again.

UConn Huskies

I have been enjoying many wonderful moments amid the tears that are hard to stop from falling. Highlights include dressing up as one of my favorite literary characters Lisbeth Salander to pair with my husband as Home Improvement’s “Wilson,” hiking to our mountain ridge lookout, taking in a UConn football game and getting to play with my niece and nephew.

A perfect setting to all of this chaos, most of the trees in our yard are snapped, scarred, and splintered from the snowstorm. Like them, I feel broken but still hopeful that I too will heal with time. Right now nothing really makes sense: 18 inches of snow in October? Golden fall leaves coated in white flakes? Halloween canceled? The cancer is back? Talk about a warped reality. 

"The Girl with the Dragon Tattoo"

Hidey Ho, Neighbor!

Tailgate

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.


I've been spending a lot more time doing everyday regular person things with very special people in my life. That has made a world of difference to my psyche. I'm not allowing myself to be a recluse anymore. I already did that to the extreme – not by choice – this entire summer. This month I'm going to work on pushing myself to be uncomfortable because I've realized that once I get past that initial paranoia barrier, there are so many positive moments to be had, and that I deserve. I'm starting to hit the tipping point. I need to grasp the concept that I can be a little more reckless, more easygoing, more challenged in exciting ways. I guess what I'm saying is that I'm again trusting myself to take the reigns of my life and gallop wildly into its next beautiful adventures.

What I do struggle with is trying to look back and process all that I've gone through. I was so busy pushing forward and focused on finding health among nonstop treatment that I didn't spend much time thinking about what was happening to me. What I did was make the best of my situation every day. I didn't have the time, mental, emotional or physical capacity to be able to comprehend how dire my situation was at moments. All of this time I never felt sorry nor grieved for myself. Now that I'm peeking out the other side, I can't believe where I've been and what I've overcome. And not just me, but everyone whose life I am a part of.

This reality gets more and more haunting and difficult with each day. Until I've started to feel better I had no idea how really sick I was while taking all of those treatment drugs. At those times I just adapted and pushed through. Now I'm so proud of myself for being capable of doing that, but so sad to think that I had to and so sad to think of what others watched me endure, yet somehow remained steadfast in keeping me going despite how it affected them.

However, looking forward is getting to be less intimidating and more thrilling with a capital "T". I am incredibly grateful for that and deeply hope that tomorrow's scan and appointments will bring me even more confidence and more freedom to live my life with.

One of my friends and biggest inspirations, Matt, who is also recovering from an allo stem cell transplant told me to:

"Keep a good thought."

I'm holding tightly onto it.

Worried Sick

I feel as if I’ve squandered away the past week. I completely bowed down to the tremendous anxiety and stress that today’s looming PET Scan was causing me. And after all of that fretting, my oncologist and I decided to postpone the scan – as well as my appointment with the transplant team – until next week. I contracted some kind of cold/flu and we do not want to risk a false positive reading on my scan results.

Whether I picked up a germy somewhere or I got myself sick with stress, I came down with a whopping sore throat, chills, feveryness, aches and tremendous fatigue this past weekend. I convinced myself that it was DoomsDay. I worried and worried and worried andworried about all the scenarios:

Conclusion A: I’d never recover from the virus I’d contracted and it would find a way to eat me alive

Conclusion B: Hodgkin’s Disease was flaring on the rise, for sure, so fast that my new immune system would never be able to catch it

Conclusion C: I re-broke my foot, as it was so achey, along with the rest of me. A piece of bone must have dislodged and was floating through me ready to nest in my brain and cause me to hemorrhage (so obvious)

All of these scenarios were evils that I manifested then couldn’t handle comprehending. I completely lost control and surrendered, basically digging myself a grave these past few days. I conceded defeat and moaned and groaned the days away just wishing I could get to today to have my damn PET Scan that would seal my fate. That is not like me, and I hated it.

I could do nothing but pace around the house like an angry troll. I think I may have worn down the floorboards with all of my aimless wandering. I slept more than half the day away counting the hours until Craig came home. I was weepy at everything. I did a lot of “tinkering”: starting projects, moving things around, but ultimately not able to follow through with even the smallest of tasks. I was so tired and so flushed. The idea of even emptying the dishwasher was enough to send me into a tizzy. It is a very good thing that I have a patient, aware, and experienced husband and dog that kept me going.

Overall, I was very sad. I felt so good the week prior and had been so positive about the encouraging strides I was taking that I could not handle the setback. I could not handle the anxiety and the anticipation of what today’s scan would reveal, nor the anxiety surrounding why I wasn’t feeling well. I’d wake Craig up in the middle of the night crying and telling him how kind he was and how much he means to me.

But you know what? I’m not dying right now. I had a cold with a sore throat. A cold. It’s now five days after the symptoms started and my throat doesn’t hurt a bit, my energy level is on the rise, and I’m walking on my foot without any type of cast with only a little swelling, no pain. I no longer feel fevery and my tight chest has opened up again.

Now I’ve learned that even transplant patients get a common cold – and an even more important lesson, we can recover from it with rest and fluids and a little anti-viral Tamiflu prescription just like a regular person. Could this mean that I’m a regular person? I’m so used to hearing incredibly grave news that it’s strange to me to think that being sick could be just that, being sick. Not that the cancer is back. Not that I’m dying.

Since transplant, my confidence has taken a big shot. I get very afraid of a lot of things, an emotion that I am not accustomed to. I’ve always been pretty fearless and even going through much of my initial cancer treatment, I spat in its face. But now, the fear of recurrence is not as easy of a beast to tame. It roars and spits right back at me. If the cancer relapses now, I don’t have many viable options. In the past I always had the autologous transplant in my back pocket. Then I knew that if that failed, I still had the allogeneic transplant card to pull. Now, I’m just dangling on hope that this is forever successful.

I get a stomach cramp from eating too much cheese and I immediately think it’s Graft vs. Host Disease attacking my intestines cell by cell. I cough and I think the lymphoma is gripping my sternum again.  I have a gas bubble in my chest and think that my heart is giving out. Obviously, I tend to jump to extremes. But I can’t blame myself, I’ve been living in nothing but extreme conditions for the past two years. I’m not used to these common ailments.

Like Dr. Sauter, I need good data. I need some reassurance that things are looking clean and bright inside. Neither one of us wanted to chance some residual chest cold inflammation showing up that could contaminate my results. PET Scans are finicky enough without the complications of a viral infection. So, I will wait another week. Yes, that means another week of anxiety, but that is far less threatening than mulling over a suspicious hot spot that’s nothing more than my lymphatic system doing what it’s supposed to do: attack viruses.

The scan delay actually alleviates a huge weight. I’m the one who called the clinic yesterday and questioned whether it was wise to get scanned today. My desire to have an accurate scan outweighed my desire to get it over with. I knew Dr. Sauter would agree with my concern. I even got out of traveling to Sloan-Kettering for a visit. Instead, I only had to get bloodwork locally today. My counts look fantastic and all blood types continue to soar into normal range.

I decided when I woke up this morning that I will not let the worry overtake me anymore. Five wasted days is too many days. And maybe they weren’t wasted, maybe I needed that rest and that zombie period to get to where I am today. I suppose bad days are important too; it helps me to realize how good my good days are becoming.

On Halloween I’ll be back to work full-time from home and will be gearing up to start graduate school to pursue my MFA in Creative Nonfiction Writing. These pursuits will no doubt help me refocus my life on what I want it to be and regain my confidence and control. I’m still straddling the gap between patient and survivor and look forward to being able to let go and come to terms with all of this. 

It’ll be refreshing to fill my days with meaningful, fulfilling projects and stimulation rather than doctor’s appointments, drugs, needles, and incessant medical logistics. I’ve got to move on with living my life. I can’t just wait around for something bad to happen. It’s damn time for some good things to happen in my life. No more wallowing around: If I don’t stop that gig soon, I’ll make myself certifiably crazy.

I did not go through the trauma that I’ve gone through so that I could shrivel up at the first signs of struggle. Things are a little harder for me these days, but with each new accomplishment, the award is that much sweeter. I just need to rekindle that drive and motivation and not let the fear get the best of me. I know in my heart that I am fully capable of anything I set my mind to, it’s just a matter of taking that first really scary step. This week’s accomplishment? I was sick, and then I got better, and then I went on a fall walk on both feet with my dog.

In the words of my man, Ray: 

"Worry ... worry, worry, worry, worry. Worry just will not seem to leave my mind alone/ Trouble ... trouble, trouble, trouble, trouble. Seems like every time I get back on my feet she come knock me down again/ Worry. Oh, worry, worry, worry, worry. Sometimes I swear it feels like this worry is my only friend." 

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.

After my CBC and metabolic panel bloodwork was drawn from my mediport, I looked at the nurse with a big, though cautious, smile and said: “I literally have nothing to report.” She ran down the requisite list of symptoms: “Any rashes? Fevers? Night sweats? Diarrhea? Stomach cramping? What’s your bowel pattern? Numbness or tingling? Trouble or pain when urinating? Itchy or dry eyes?”

I shook my head side to side at each question indicating that I had no issues with anything on her list. This is a far cry from my initial post-transplant appointments when I would have comments on each of those categories and usually a separate list in my notebook of symptoms that had arisen, which I wanted to discuss. 

“I go through this list because these are all things that could be signs of Graft vs. Host Disease,” said the nurse. “If any of these symptoms come up, you need to let us know.”

I understand. I understand that I am not out of the woods and that GVHD can come at any moment, and can be with me chronically.  I understand that it wouldn’t be a bad thing to see a little creeping in, that it would show promise of a more aggressive Graft vs. Lymphoma effect. I understand that we are very aggressively tapering my immunosuppressants and therefore aggressively opening me up to auto- immune attacks. About fifty percent of patients endure GVHD after 100 days post-transplant. Though, there is still a chance that I could get away with a cure and no GVHD at all.

I also understand that I don’t have any of these symptoms currently and with this understanding, I’ve got to take advantage of this time. After examining me, Dr. Sauter was happy with my progress, lack of post-transplant issues, and encouraged by absence of any lymphoma symptoms. However, he likes data and so do I. This is what makes us a good team. This time data will come in the form of a PET Scan. It has been more than two months since my last one. We want to see what is going on inside of me to be sure that there is no lymphoma on the rise and therefore be able to better determine if this immunotherapy is working.

Unfortunately, PET Scans provide such finicky data. The technology catches any kind of metabolic uptake and is hardly conclusive, but as Dr. Sauter, who isn’t a huge fan of the at-times inconclusive evidence the test provides, says: “However, this is your test.” The lymphoma I’ve had in the past does not show up on other types of scans, so this is what we have to work with and it’s the form in which my comparative data lies.  

Our hope, obviously, is that there is no growth. My last scan in August showed very, very tiny spots of possible cancer that would not be of concern except for my history with the disease. We’ve now given a solid two months for my new immune system to kick in and go after any rogue cells. There is much reason to believe that it is working, or at the very least, keeping things at bay.

The impending Oct. 20 PET Scan means I am now holding that massive bag of anxiety over my head once again. If the past is any indication, the bag only gets heavier as the scan day gets closer: T minus one week. That’s only one more week left of freaking out and creating incredible scenarios in my head. I’m an emotional wreck swinging from elation to depression and back again. I need to get better at handling this as these scans will be a reality for the rest of my life. My vast imagination can be a real damper on the scanxiety process. I’m very hopeful and also very scared. I’ve had some chest fullness, which in the past has been an indicator of disease on the rise, but it’s difficult to tell that from the chest fullness that anxiety also brings.

But back to what I do know and understand for sure and what I don’t need a scan to tell me. I am still feeling incredibly well more days than not. My head and heart are still open and clear. I am still free to live my life now, no longer in the confines of that hospital room unable to control my surroundings and activities – never mind my bodily functions. There have been a few tough days this past week, which caused me to cancel plans with friends and succumb to very early bedtimes and some self-pity crying sessions. The fatigue is still tremendous when it barrels in. However– and a big however – this past week has also provided me with some fantastic days, some of the best of my life. 

I talked to my sister, my donor, from across the country this past weekend and she told me that I sound like myself again, that it’s again “Karin” in my voice, and that I’ve regained my sense of humor and sounded bright and strong. 

“Sisterrrrrrrrrr!!!! You’re back,” she said, in her beautiful, loud and brutally honest vernacular. “I’ve got my sister back!”

This was the best compliment and the most conclusive data evidence of health I could ever get.