Working My Way Out

photo courtesy

Salvage treatment has started. I had my first infusion of Gemcitabine (Gemzar) chemotherapy this past Friday. It is not a drug that is new to me: I once received it as part of the regimen GND, one of the first regimens we tried to get me into remission after I relapsed from my autologous stem cell transplant in 2010. Now, we’re hoping it’s the lone ranger that will be my “get out of jail free card,” as Dr. O puts it. I don’t think it’s going to be a “free” ride by any means, but more of a “guaranteed” ride, as it’s well proven to work against HL. The side effects are supposedly small compared to other chemos, but chemo is chemo and it still makes me feel like shit. And for me, after being through so much of it, unfortunately, I’m more sensitive to those side effects.

This plan hatched after a long conversation at Columbia with Dr. O, my mom, and myself after he and his team had poured over my treatment history and attempted to find creative ways to get me out of this current situation.

A positive takeaway was that Dr. O said the amount of disease I have in my body is really unremarkable. He says that normally looking at my PET Scan and CT Scan results, doctors would give a shrug and give a “eh.” Unlike other patients, I am not contending with a 9cm mass pressing in my chest. For this I am grateful. What I am contending with is disease that – though scattered and therefore not causing any immediate danger ­– is in annoying places that causes it to be symptomatic. Annoying places like my bones and along my vertebrae, which leave me with pain syndromes. Because of this, we must treat a little harder so as to not allow those places to get worse.

We are dose escalating this drug, not using the normal protocol, but a special “Karin protocol” because we know how compromised my bone marrow is from all the treatment I’ve received – most especially my two stem cell transplants. With each treatment it gets harder for my body to muster the strength to create new cells after the chemo wipes them out. My body is tired. Therefore, we’ll watch my blood counts closely, as Gemzar can especially take a hit on my platelets. If things look good, we may add in another drug to the mix. I’ll be riding out this plan for a few months and we’ll depend on my symptoms to reveal improvement and will put off imaging until necessary. Another thing to remember: all of these PET and CT Scans expose me to more radiation, which means more cancer risk.

We had a lot of laughs with the doc and his amazing nurses. Dr. O and I hugged it out solidly. I know he wants the best for me and that I’m in good hands. I love the connections that I have with the team through e-mail and how I never feel like I’m floating out on my own. Though we have these really serious conversations, we can follow them up talking about our favorite candies and how my hot flashes were causing me to strip on the train and how the Decadron he gave me would have me pushing the damn train back home. It feels good to feel like you’re in a human environment.

Fortunately, I am able to receive the chemo locally at Hartford Hospital so as to avoid weekly trips to the city. I feel even more at home here, having been treated at the Helen & Harry Gray Cancer Center on and off for almost four years now. Secretaries, lab techs, nurses and doctors aren’t just my medical team, but truly friends. Not much changes there which is comforting, but also sickening as it brings back a lot of tough memories. I do my best to focus on the sweet moments and not break down at the saddened faces of those around me in the other chemo La-Z-Boys. This chemo drips over only a half-hour, making it about a 90-minute trip with pre- and post-meds, port insertion and removal and rigamarol. Not too bad. Then it’s just a 20-minute vs. 3-hour ride home to my couch where I can sleep it off. So far Dr. D and Dr. O are working together seamlessly and I’ll take the trek into the city once a month to check in and get checked out.

Though the infusion process was just another infusion process, it’s been a chemoey few days. I wanted to see no one over the weekend, and I was in quite an emotional downturn. The fatigue was – and still is – pretty tremendous. If I put my head down, I am asleep. My body also has that familiar swollen feeling both from the chemo drugs and the extra super Decadron steroids I get with the infusion. We are again trying to get me off of steroids of any kind since we can now rely on the chemo to hopefully be holding back the cancer. My eyes are bulged and my muscles and lungs even feel very tight. I went on a walk around my neighborhood yesterday and it was very hard: hard to breathe and even hard on my muscles.

Gotta have goals. I will be strong again.  photo courtesy

I’m realizing that I am very out of shape as I’ve had to “lay low” so much after the pneumonia debacle, long hospitalization, pain syndromes then biopsy procedure. Finally this week, I get the go-ahead to start using my arm again and my plan is to ramp things up again – gently, but consistently. I have this incredible urge to get strong again. I hate the feelings of weakness and lethargy and I don’t want to bow down to the chemo. Today was a much easier walk with Craig and Sam and this week I’m going to take my first dive into water aerobics – gentle, supportive, non-impact and a certain way to make some senior citizen friends at the Y.

Soon – hopefully only a few months of this ­– and fingers crossed, we’ll be able to decide the next step as this is not a sustainable treatment. I already got all choked up in the doctor’s office anticipating what that next step will be. It will be a massive life decision, as if I have not made enough of those already.

If/when the Gemzar does what it is expected to do, I will ideally be left in a state that is real close to remission. Now, what to do with that remission will be the big question. I’ll immediately jump to a clinical trial with the hopes of it holding that remission in place as much as possible. Then I have to decide: stick with the clinical trial route and hope that science keeps moving fast enough that I can jump from one to the next for the rest of my life – keeping things in a potential state of constant flux. Or, strike while the iron is hot and take advantage of the only short remission I may ever get and attempt a second allogeneic stem cell transplant, this time with a matched, unrelated donor.

This second option scares the shit out of me, but it is an option, probably the only option besides some miracle or huge scientific advance that could guarantee me the highly coveted long-term, cancer-free remission (after a long recovery process and most certain bouts with risky graft vs. host disease along the way.)

No matter what, I do want to know if this option is even a viable option for me. I like to pour over options. Could my body handle it? Is it advisable? Is there even an unrelated donor out there on the Be the Match registry that is a close enough match to me?

Time is of the essence, as I learned with my first transplant. If I do reach remission from the Gemzar, I need to be able to jump immediately when that happens. Therefore, we need to start tapping resources now. I’m being connected with transplant doctors at City of Hope in Los Angeles and with Fred Hutchinson Cancer Center in Seattle: the two leading transplant centers in the nation with regard to second transplants/haplo transplants/mis-matched transplants – all the fancy stuff I’d be getting into. It’ll be good to find a team and a pseudo-plan now so we’re not scrambling. The Columbia transplant doctor will also begin searching the marrow registry for a match for me, and I’ll be in touch with my Sloan team as well.

Deep breath. As much as I want to say that is all months away and I don’t need to worry about it, I do need to lay a foundation and that takes time, fortitude, and along with that comes, confusion and anxiety. At the same time, I need to focus on getting myself through this immediate step, incorporating the weekly infusions into my life, getting my strength back and highly refocusing on my healthcare plan. I need to do whatever I can do to complement/combat what this chemo is doing in my body so that I’m ready for the next step.

And not just the treatment steps. I’m also gearing up for another beautiful summer of paddle boarding and kayaking, weekend beach travels, more writing opportunities and volunteering. More living my life out loud rather than on the couch. The end of winter was rough in many ways and I’m ready to break out. Right now I’m sick of recovering from this chemo and it’s only been three days. I need to get over that, take a gut check and be grateful I even have this option. I need to be gentle with myself and also kick my own ass. Easy f’in peasy, right?

Phasing out the 'Roids

Today's Starbucks nest. 

Thursday also starts with a “T” meaning that it qualifies as a Tuesday blog post, right? Really, I am trying to get back on the Tuesday/Friday posting wagon because it’s good for me and – I imagine in my head – good for readers to be able to anticipate when posts will be up. [Is it? I’d love to hear from you in the comments.] Today’s blog will serve as a Tuesday/Friday hybrid post: Tuefday.

Ultimately, I didn’t get to writing this week because I am so damn tired and most of my energy has been devoted to laying plans for next treatment steps – with a haircut, pedicure, Hartford dinner date with Craig, and a lady’s movie and lunch date thrown in there (it’s not all medical mayhem). I am tapering off of the 10mg of Prednisone that I’ve been on for months and which has been my little comfort dose. I am now taking it every other day. Today is a no steroid day. I’m trying to replace it with green juices and smoothies and shots of apple cider vinegar and it’s helping a little with the transition. I’m supposed to be doing all of this every day anyway as prescribed by my naturopath, but I’ve fallen off of that wagon lately, too. I’m transitioning better than I have in the past, but it’s still not easy. However, if I can do this, then it opens up more clinical trials, so I will make it happen.

I’m tired for a variety of reasons:

I’m still pushing past that lingering pneumonia. It’s much less, but I’m still coughing and my nose has been running incessantly from a lingering cold. I carry wadded up tissues in my fist like my Nonna used to do. She’d tuck them in her shirtsleeve so they’d always be at hand. It’s helpful because I never know when the faucet will open. 

Nighttime sleep has been a joke – still – even after being home in my own bed. I have bad nightmares and I talk in my sleep a lot so I’ll wake up sitting up in some weird position and will have to basically slap myself to make me realize that the dreams aren’t real. I’ve also been sweating again: both as an effect of the floundering steroid hormone levels and probably the disease itself. Last night I woke up in the middle of a sweat and actually witnessed the sweat beads popping out of my skin, all over, until my legs were slick with salty water and my tank top was misshapen and heavy, a huge ring of visible wetness on it from my neck to my bellybutton. As much as Craig urged me to, I was just too tired to get out of bed, dry off and change, so I fell back to sleep chilled and smelly.

Sweats don't just happen at night either. In fact, I just had one right here. That fireplace next to me suddenly feels like the fires of hell. All of the sudden I'll break into crazy hot flashes and have to strip down to as little clothes as possible. My forehead will bead up and it'll suddenly become hard to breathe. This happens from the hormone up and downs, from the disease, and probably from early menopause, though I'm in full denial surrounding dealing with that. Oh, and P.S. My left boob is still completely numb and aches most all the time. 

The disease is on the rise and my body is in high alert mode. It’s a different tired than when I’m on chemotherapy, which is more drug induced. This is more of a natural tired feeling. It’s actually preferable because when I do fall asleep – which happens best during mid-day naps – I fall asleep quickly and into a very deep sleep. This kind of tired is felt deep in my bones and in every organ. I get to a point each day when that’s. just. all. i’ve. got. No mas. It’s like watching a computer shut down. It goes through each of the open programs and closes them in succession and the screen slowly fades. My body will get tired, then my eyes will get heavy, then my words start to slur. However, with me, no one asks if “I’m sure I’d like to shut down now”. Something greater than me is in control of the power button.

Muscle and bone aches are another prominent feature of the steroid wean. My quads feel like jello and my back muscles are sucked onto the bones as tight as Saran wrap. Without the Prednisone, the awful pain is also revisiting me in my left shoulder blade. The same pain that popped up while I was in San Francisco. The steroid must have been keeping the inflammation surrounding it at bay. It’s one little, very pinpointed spot that has the power to send these electrical flares of pain through my entire body. When it’s really throbbing, which mostly happens in the middle of the night and wakes me up, I feel like I took a bullet there and the pain is reverberating from the impact. I’ve tried Icy Hot on it, I’ve tried massaging it, I’ve tried ice packs, and mostly, like they teach in yoga, I just breathe into that sucker with the utmost focus because it’s all I can do. Oh, and I’m still on the pain patch. It doesn’t touch that kind of pain though. In fact, two Aleve are what seem to be the best for it. They at least take the edge off.

Focus has also faded. Hence, lack of blog posts. It is so much work for me to get out of the house. I am at Starbucks now, but I didn’t leave the house until noon. It’s hard for me to get out of bed, if not for Sammy Dog clicking her little feet by my bedside doing the gotta-pee dance. It’s then hard for me to get out of the shower because it’s so warm and the idea of putting clothes on and making myself presentable is so daunting. Then, I make an elaborate production of morning breakfast and e-mail, Facebook checking. Gotta make an oatmeal with nuts and seeds and fruits, green tea and a lemon water and a green smoothie and get fully caught up on correspondence and take my pills before I go anywhere. Mostly, it’s because I’m too tired to get up off the chair.  Then – shit! – it’s 11:30 a.m.

In order for me to leave the house for some reason I have to prepare like it’s the Apocalypse. It takes me a while to pack everything that I might want to work on, enough things to drink, a snack pack (highly important!), Purell, tissues, as-needed meds, notebooks, red pens, charging cords, sneakers – in case I’ll go for a walk along the trail behind Starbucks, and yoga mat – in case I’ll do a drop-in gentle class at the studio one plaza over. I even do this in my own home. I create a little nest of things I might need all around me. It’s weird and I think a habit I carried over from transplant days when I’d need things at the ready and wouldn’t have the strength to necessarily get to them.

Then, I finally get to Starbucks and they rearranged all the tables in a weird configuration that almost sent me into a panic attack. My usual spot has been replaced with three resting chairs and a little side table. The other tables are right on top of each other and broken into twosomes. What the freak? It’s like my brain is so used to handling the super, super big things in life all the time with relative ease that the easy things can really throw me for a loop. 

Tell me there’s new spots of cancer filling up my lymph nodes and I’ll digest the news no problem. Let's move forward and find a way to fix it. Hide my eos lip gloss egg on me and I can literally break into a panic. I like to blame these tendencies on the steroid taper and insomnia, which I like to blame everything on. A positive is that I’ve been much more receptive to just enjoying things, relaxing, going for impromptu outings and am looking forward to a fun weekend with friends and a dinner party planned. I’m too tired to feel guilty for not being productive and have had a big mind shift lately in realizing that just “chillin” – as my younger brother and sister always call it – is productive too, just in another way. My head and body certainly do need to “chill.”

Family, friends, doctors, and cancer confidants were in agreement with my gut on the biopsy question. I’m going in next Thursday to see the Hartford Hospital surgeon who performed my first two lymph node biopsies from my underarm. He’s very kind and very skilled. I am so fortunate that my Columbia team had no problem with me getting the procedure done locally, completely understanding the extra stresses that eliminates. I’ll be comfortable in familiar territory and close to home. They’ll be able to analyze the tissue directly as well, so it doesn’t really matter who it is cutting it out.

Thursday will be an assessment of the nodes he could go after and potentially could be the biopsy itself if he determines it’s something he could do right there in his office. Otherwise, we’ll set up another appointment in an outpatient facility. I’m hoping for the former, but am up for whatever it takes. What’s another scar and surgical recovery at this point? Treatment is halted until we get these results.  


[Sidebar]: I reworked, sliced and diced my recent blog post "The Semantics of Cancer" to meet submission requirements, and it was published on The Huffington Post. Check it out here. If you like it, please give it a Facebook thumbs up, share, or tweet it out to your personal social media worlds. You can also "like" me as a HuffPo contributor and get updates anytime I'm featured there. Thanks for following! 

Withdrawal and Dependency

I passed all of the pre-tests with “flying colors” to get onto the NAE inhibitor Phase I trial at Columbia: healthy heart, healthy urine, normal blood cell levels. Turns out the sponsoring drug company will pay for travel and accommodations, so I booked a hotel suite just a couple blocks away from clinic adjacent to Rockefeller Center. The amenities that sold me were the kitchenette, free WiFi, free filtered, bottled water, and a free “yoga kit” brought to my room on demand.

All of our questions were answered, the consent forms have been signed, and the treatment calendar was drawn up by the study coordinator. I would start treatment on Monday, Jan. 28, and live in midtown Manhattan through Feb. 12. It meant that I had to back out of my performance of “The Vagina Workshop” in The Vagina Monologues, as I wouldn’t be able to make the rehearsals nor the performance even. It meant that I’d have the four days free to attend the San Francisco Writing Conference I’d won a scholarship for, but wouldn’t be able to swing our long-ago booked San Fran/NoCal vacation that Craig would be joining me for – with flowers in his hair – the following week. My medical team would plead with the drug company to allow some flexibility in the regimented schedule to allow a five-day delay on the second cycle start. Results still pending on that one. 

Though the infusions themselves are only twice a week for 60 minutes, each of those days requires blood draws every hour, on the hour, for six hours afterward, and each day in between requires clinic visits for EKGs of my heart, urine testing and more bloodwork for safety monitoring and data gathering. I’d go back to the city for another overnight early the following week then have a week off before starting up the second cycle.

We had a caregiver/company keeper rotation set up between my mom and Craig, and some space built in for alone time for writing projects, which I planned to do by the natural light that pours through the grand windows of the New York Public Library. I was beginning to research Broadway shows, concerts (both Fun and Mumford & Sons are playing in the city while I’m there!). I started back up my e-mail subscription to midtown Manhattan Groupon and Living Social deals.

After much internal (and external with my husband) debate, we went away on a previously booked ski trip to Vermont with two incredible friends and a crew of their friends, who quickly and comfortably became ours this past long weekend. I was hesitant to go because I was pissed I wasn’t allowed to ski nor drink – and what is a ski weekend without time on the slopes and an après-ski IPA?

I was anxious about being away for a three-day weekend when I’d be away from home for long stretches at a time again so soon. Then, I had a change of heart and realized I was getting ahead of myself, disallowing myself fun now because of the tough stuff that was around the corner. I could still have a fun, relaxing weekend, just doing it differently. This is my new life and I can’t avoid that by getting caught up on what I used to do in the past. Adapt. Adapt. Adapt. We packed up Sammy and headed north. Craig would ski both days and I would hang back with those who didn’t.

I couldn’t have made a better decision, as the weekend was full of hearty laughs, delicious food, fun people, reading, relaxing, football watching, and dog cuddling, all in a fantastic, eclectic Vermont home with views of an expansive frozen lake and snow-covered trees made more beautiful by passing flurries of fat white flakes. I didn’t think about cancer or my upcoming treatment for more than a fleeting moment.

What I didn’t know at the time was that it was a last hurrah before shit hit the fan on the evening of MLK day. Seeing as I’ve been relegated to the couch and the bed from Monday evening to this morning when it’s now 4 a.m. and I’ve been up since awakening with excruciating pain at 2:30 a.m. yelling to Craig that I need hospice care, things have gone downhill fast. After two Aleve and a heating pad, I am off the hospice thoughts, but only the very edge is taken off. I am in some of the worst pain of my life.

This clinical trial does not allow a patient to be on any amount of steroids. I have been on a therapeutic dose of 10mg Prednisone for months now after trying to come off of it after several months at 60mg necessary to clear up post-radiation lung inflammation and having dizzy spells and blood pressure drops without it. I was told on Friday that I’d have to come off the Prednisone again, instructed to drop to 5mg on Saturday and Sunday then cut it out altogether on Monday. Being at 5mg over the weekend in VT wasn’t so bad: I had some headaches and back pain in the morning, but it went away with Aleve and breakfast. However, when my body realized by Monday evening that it wasn’t getting any, it went ape shit.

10mg is about the amount of Cortisol that our bodies produce naturally, which can be replaced/supplemented with steroid therapy. Cortisol is a life sustaining adrenal hormone essential to the maintenance of homeostasis. Called “the stress hormone,” cortisol influences, regulates or modulates many of the changes that occur in the body in response to stress. Without it, the body can’t effectively fight disease and stress or regulate itself. Well, from the symptoms I’m having there is worry that my adrenal glands, which produce the hormone, have gone caput after being in a state of stress for so many years now, going through so much treatment, and having been on so many steroids (a double-edged sword).

Without even the small level of Prednisone, I’ve been riding a wave of severe Hodgkin symptoms and steroid withdrawal: fevers in the 100 range, soaking night sweats, sleeplessness, extreme fatigue, shortness of breath, incredible pain in my back, hips and pelvis, aches and swelling in my lymph nodes, insatiable itchiness on my legs, lack of appetite, nausea. Basically, the works. 

My medical team does not like this and is highly concerned. We already know that the disease is on the rise and that the Prednisone acts as a Band-Aid masking symptoms. As my nurse explained to me today, once that Band-Aid is taken off, everything that’s been brewing underneath is exposed – hence all my b symptoms raging. On top of that, the fact that I may be dependent on the Prednisone for my Cortisol brings its own very serious dangers, as the body cannot function without those stress response functions.

In three hours I will get a blood test locally to check my Cortisol levels without the steroid. If they are less than 5, I will have to go back onto a Prednisone course, which would disqualify me for this clinical trial and wipe out all of those beautifully laid plans above. My body’s drug dependency will probably disqualify me from many trials. I don’t know yet what the plan of action would be, but I obviously need a treatment that works – fast.

If I do have enough Cortisol, it may mean that these are just steroid withdrawal and Hodgkin flare symptoms. I’ll be able to move forward with the clinical drug trial, and they’ll give me a drug similar to, but not, a steroid that will help to stimulate some of my functions that are lacking.

I’m scared and exhausted but can’t sleep due to the pain. I have to get through another whole day and night before Cortisol level blood test results return and we can determine the safest way to get me feeling stable again.

"It's better to feel pain, than nothing at all ...
So keep your head up, keep your love
Keep your head up, my love
Head up, love."
-The Lumineers

"Stubborn Love" by The Lumineers from Look Sessions on Vimeo.

Revlimid 3-Week Update

I have been taking the Revlimid immunotherapy treatment pills for just about three weeks. I think it’s safe to say that overall I have been feeling well and that the side effects are not much at all. The initial few days on the medication were tough, but that is always the case when shocking my body with a new set of chemicals. Everything seems to have synced up nicely. I no longer have the pain I was having in my bones when I first started (remember, this was a good thing indicating that my natural killer cells were zeroing in on the cancer cells and causing a flare, we hope). The fatigue is still pretty intense, but my head is clear and I’m able to live like a non-cancer patient, so for that I am grateful.

However, I can’t say that things have gone so smoothly during my continued adventures with Prednisone steroids. As I mentioned in my latest medical blog update, I had tapered down to zero after three months of use and my body went haywire with immense body aches, fatigue and high fevers. The Columbia team put me back on 10mg along with the start of the Revlimid 10mg to get things stabilized again.

After a week, I was having muscle vibrations and loss of strength in my quads – a common side effect of prolonged steroid use. To combat this, the team agreed to wean me off again as I was no longer having fevers. I started to taper off of the 10mg by 2.5mg at a time, dropping every five days. Apparently that wasn’t slow enough.