To use a boxing reference, I've been on the ropes for the past couple of weeks. I've been taking jabs to the head and the body, weaving and keeping my hands up to protect my face. The important part to note is that my gloves are still up. My body hasn't hit the ring floor. I just hope to hell that the final bell is damn close to ringing, as I have been through enough rounds.
I’ve had blips of coming back swinging, of standing strong on my own two feet again, but unfortunately they quickly pass. Most of the time on this clinical trial has been spent panting on my stool in the corner, wet towel on my head and water being squirted into my mouth between rounds – my coaches shouting motivational clichés at me.
My second cycle of the trial drugs, Panobinostat and Everolimus, began on April 29, though that doesn’t really mean anything beyond written study protocol. I have been on the trial for 41 days total and my pills were held back for a total of 14 days due to my baby white blood cell (neutrophil) count being below 1,000 or because the side effects were just too much.
Since I’ve been home, I’ve received Neupogen shots twice, which has helped to bounce my counts back up within a day each time and gotten me back onto the drug calendar schedule. This has allowed me to be off the drugs for no more than four days at a time.
I’m proud to stay that my platelets and red blood cells, though low, have held on and I still have not had to receive any blood transfusions. Somehow my bone marrow is still working.
However, this clinical trial has not been a breeze by any means. Yes, I’ve escaped dreaded mouth sores and my hair isn’t falling out, but the fatigue is tremendous. I have a very small energy tank and a very low appetite. My weight is down by 10 pounds since I started the trial April 1. There are tender areas on my rib and hipbones, red dry skin spots, and back aches – hence the boxing analogy. I’m pretty beat up.
But such is the world of cancer treatment. A big factor at play is how much past treatment I’ve received. Anyone’s body would still be recovering from an autologous stem cell transplant, but I’ve been doing that and remaining consistently on treatment regiments since. Hence, the refractory Hodgkin Lymphoma world. All I can do is adapt. Prime example: looking at a plate full of food makes me nauseous and intimidated, so instead, I dump the entire thing into the blender. This morning’s mix was a salad of spinach, strawberries, cantaloupe, and coconut water right to the brim of the blender. This way I can sip in all of the nutrients I need: far more than I’d ever be able to get down chewing and digesting.
Despite how frustrated I can get, I have been functioning remarkably well for what’s predicted, I think. There are patients that are off of this trial for up to three weeks without taking the drugs while their bodies recover, so I have the time if I need it. These are such early phase drugs for treatment against HL that everyone is learning as we go. I take my job seriously to report symptoms and to push back when I know I’m not feeling right or when I need to take a break. I am used to taking chemotherapy that has regimens like 1 dose, three weeks off, but this is every day. Three days a week it is two pills a day. That pace gets exhausting and a few times now my body, mind and emotions have given out.
But with those breaks, I’ve bounced back up. I have been off the pills since Monday. My WBCs are in the toilet, neutrophils at 0.2 as of yesterday. After a very difficult weekend side effect-wise, I declined the Neupogen shot on Monday knowing full well that my body was still recovering from the one it received on Thursday, nevermind both the drugs. After no signs of natural recovery, I took it in the arm yesterday and hope that my counts will be high enough today to get back on the pills.
I take the Panobinostat in addition to the daily Everolimus on Fridays, Sundays, and Tuesdays, so those days are particularly hard for me. Last Sunday night was something awful – insomnia, stomachache, back ache, racing heart. Now I know not to take my pills at 10pm. Bad idea. This is all about experimentation. That’s what a clinical trail is, right? What gets me through the tough moments is knowing that going through them will help other HL patients in the future. I am providing essential data to future cancer treatment development. That is a tremendous motivation and honor for me.
The most difficult part of all is the coordination that I have to do. I am now working with three institutions in three different states: Hartford Hospital, Memorial Sloan-Kettering, and MD Anderson. I need to keep them all in harmony, up-to-date, informed and be conscious of their time and my time. It is an absolute truth that being a cancer patient is a full-time job and lately my company has grown tremendously – with it have my CEO responsibilities.
It’s just like working with different clients. Every one has its own processes, protocols, care practices, opinions and egos. The key is for me to know how to approach each one to best accomplish what I am trying to do. But at the center of each institution is my care. I truly know that I have the best doctors and nurses wanting to do what is best for me at all times. I just wish I could get them all into one room for a weekly conference meeting to go over my case updates. But that won’t happen. I am now doing my damn best to conduct this medical orchestra through e-mails, phone calls, voicemail after voicemail, faxes, secretaries, documentation and butt covering. It takes an obscene amount of patience and persistence.
So much of the decision making for my care is in my hands, which is empowering and scary as hell. As much as my medical teams care about me, I am not their only patient and they cannot remember every detail about my case nor are they thinking about it constantly, as I am. I am the only one who sees the big picture, knows the key players, and therefore can manage all of the logistics of painting that picture. Nothing happens in a vacuum so I am constantly conscious of how each puzzle piece relates to another. As Craig says, I’m currently everybody’s patient and nobody’s patient. I have to look out for myself.
I am incredibly fortunate that my voice is heard and that I am a very respected as CEO of this team. Frankly, I don't think that anyone else wants the job. At this point in treatment I know what I need to reach whatever goal it is I’m trying to tackle and my team has been more than happy to oblige and let me take the reigns. As always, I know my body best, but most recently I’ve been less shy about stepping into the leadership role to ensure my safety and survival. Never trust a fax (or a fart). And never assume, it makes an ass out of you and me.
That is not to say that I always do this with grace nor that the stress, frustration and anxiety does not become overwhelming. I have lost my shit more than once, but never to the medical teams … as much restrain as it has taken at times, that is not how I roll. “Kill them with kindness” is still my motto – extra kindness to the secretaries as they hold the power. It’s my poor inner circle that takes the emotional release. If I did not have my family, friends and my husband to pull me out of my funks and get me back on my conductor’s podium, this orchestra would have long ago tooted its last horn.
I have been extremely busy running my own business and staying on my feet in the ring. Though on my off time, I have had some wonderful moments and have been much more at peace in enjoying simple things. I’ve rejoiced at visits from beautiful friends. I’ve had some glorious naps. I’m back with Sammy The Dog for walks, cuddling and resting on the lawn in the sun together. I got to hold my newborn niece. We enjoyed a special mother’s day with my and Craig’s mom and grandmas. I’m back into a regular yoga practice. The Connecticut weather is something out of a child’s drawing: perfect temperatures, a blue, blue sunny sky, and everything in glorious bloom. Soon, I will be too.
Next on my docket is to complete all of my pre-allo transplant testing for the fourth time. I head to Hartford for a Pulmonary Function Test today in addition to my bloodwork. One result gets faxed to New York. The other result gets faxed to Texas. Ill be there somewhere in the middle getting a needle in the arm then filling and emptying my lungs into a tube with all my might. I have to pass the test.
I’m currently double booked for a PET Scan in NYC next Thursday and one in Houston, Texas, next Monday to check the drug’s progress and see if all systems are go for transplant. Currently I’m trying to smooth out that wrinkle … everyone wants me in their machine for their own – very legitimate – reasons. I’m working each angle, considering all the factors, and making my case (aka brownnosing) both oncologists. Welcome to Diamond, Inc., where customer service shines. [insert cheesy logo featuring a winking cartoon man]