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Tuesday, February 5, 2013

The Treatment Merry-Go-Round

Round and round we go...
Here we go again...the new year hasn't been so good to me thus far. It started off with the abrupt news that my company stopped using the speciality pharmacy that I used to receive my Revlimid, the (very expensive) medication that I have been taking for the past year. And the new pharmacy denied the request for Revlimid because it hasn't been FDA approved for Hodgkin's and they didn't want to pay for it. Well, clearly they don't have the stats that my doctor has on the drug, because it has worked wonders with lots of people (including me!). So I was forced to (along with the help of my fabulous medical team) call the insurance company, the prescription company and the pharmacy multiple times a day, for seven days in a row, to tell them in a nice but firm tone how imperative it was that I receive this medication. Like, life or death people!

I don't write about the insurance part of managing a disease a lot, but it sucks. Seriously sucks. And I'm a lucky one. I've spent many hours calling my insurance company, questioning bills, begging someone to call me back, yelling, emailing, faxing, etc. It's a full time job just to handle the insurance part of cancer, and I'm a smart person who knows how to handle issues like this, but what if I wasn't? I thank God all the time that A) I have health insurance and B) I have a good head on my shoulder and I know how to curse someone out if need be :)

So I finally ran out of my Revlimid and yet the pharmacy still had not approved the prescription. I thought I was going crazy, because I started to think that this was a sign of bad times ahead for me. The fact that I couldn't get my drugs (I sound like an addict) was a sign that I would no longer need to take the medication. You see, my CT scan was scheduled for Jan 25th. I was out of the Revlimid pills for 8 days before it was finally approved and by the time I finally received it and restarted the medication on Jan 8th, I was scared. I started feeling more pains in my chest, waking up sweaty, questioning if it was a night sweat, and freaking out mentally. I got a letter in the mail from the pharmacy that Revlimid was approved--but only until April. "Another sign," I thought. I won't need it by April.

Unfortunately I was right. I'm back on the treatment merry-go-round. On Jan 28th, my doctor told me that my CT scan was just "okay". There were areas in my chest that had improved, but areas in my abdomen that got worse. They weren't huge increases given that my last scan was in July (six months ago--the longest I've ever gone without a scan!) and my SED rate was 7 in November, it's 26 now :(, but an increase is an increase. And my doc doesn't play games with that! I was on Revlimid for one incredible year where I felt....NORMAL! It was amazing, the best year of my life, or at least my life with cancer,...which I said to my doctor and he laughed, looked at Ross and said, "I thought you were going to say because of him." Oh. Yes. Because of Ross too :)

So it sucks to find out that this miracle drug, which was not a chemo drug, which came in PILL form, which I experienced almost no side effects, had failed me. I failed me. My body failed me. Back on that damn merry-go-round. If you can't already tell, I'm angry. But I'm not sad. As annoyed and pissed off as I am about this...this is the first time I received bad news and didn't cry. I don't know if I will break down next week and cry but I'm not that sad. I think I've accepted (for today) that this is just my life for now. I hate it and it's not fair, but I know it's all for some bigger reason, bigger purpose.

And so we move on. To another treatment. This time I'm starting a clinical trial for a novel inhibitor called NAE for short. It's not a chemo, but an enzyme drug that will go after the cancer cells. The funny thing is that I'm not even nervous about a new drug, I'm just assuming I will feel fine...I have no idea why I feel this way though, I think Revlimid has clouded my judgement and I hope I'm not in for a big surprise. The part I'm focused on is how the drug is administered. Revlimid, I took at home every night along with my calcium and fish oil pills, as I was watching Real Housewives or Chelsea Lately. NAE requires me to be hooked up to an IV twice a week.  I.Hate.Going.To.The.Doctor.For.IV.Treatment. I have no patience! I start freaking out! I lose my mind! I start yelling at nurses! It's not my shining moment. PLUS, because this is a trial...that means I will be back and forth to the doctor a lot of blood work and monitoring. But I have no choice. My medical team believes this trial is the next best thing for me, and hopefully, if I do well, I could go back to my buddy Revlimid. UGH! The patience I will need when I start the trial next me!...hmm...maybe they can just put me under some local anesthesia and I won't remember anything??

One silver lining is that today I finally met my friend Bekah in person. Bekah is another fellow Hodge Warrior who has been fighting for 6 years. We connected via our blogs, email, and through a Facebook group of Refractory and Relapsed Hodgkin's patients. This Facebook group is amazing! We support each other through the good and the bad, plus we ask for opinions on treatments, doctors, and trials. Bekah is an amazing person who always spreads love and light to everyone else--even in the midst of her own pain. I've learned so much from her and watching how she handles herself with such she's super smart and knows much more of the medical jargon then I pay attention to :) So it was amazing to see her in person at our doctor's office today! (We both see the fabulous Owen O'Connor) We chatted like old friends...cancer bonds people instantly! It's kinda crazy. I have no qualms about telling other Hodgkin's patients my deepest, darkest secrets (sorry Ross!) because I instantly feel connected to them.

Soooooo that's where we are. Another year, another treatment. Boo.


  1. MGT: as usual you write beautifully about your "situation". Thanks for your honesty and your courage and yes, your anger! Whatever it takes to get you through this - we know you will see victory. Cheering for you.

  2. Good luck and God Bless!

  3. Keep on writing, great job!

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