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."