Monday, December 29, 2008

Bringing You Up to Date (Happy Holidays)

Before I begin this entry, let me say that it was a blessing being able to be home for Christmas. Rach and I wish all of you nothing but the best this holiday and to our family and friends, we love you and continue to appreciate all you have done for and with us.

Okay; so, back in April, we have our initial meeting with Dr. Tarhini, who like I said before is a soft spoken, kind-mannered gentleman who like Dr. Lee has a way of both relaxing and comforting you with his manner. He gives us options. Our first option is to try a clinical trial of a treatment called VEGF-Trap (Vascular Endothilial Growth Factor - Trap), which they hope will prevent the growth of new blood vessels needed for her tumors to grow. It sounds like a great first option. The side effects compared to other treatments are very minor and much more manageable. Trying this would also give us more options; if it didn't work, we still have the other, more traditional treatments as well as other clinical trials we could use.

Needless to say we agreed to participate in the VEGF-Trap trial. Rach would have to get the treatment via IV at the Hillman Cancer Center in Pittsburgh every other week, and would get labs done after a two month cycle of those treatments. Things appeared to be going well with the VEGF-Trap. She seemed quite healthy, and besides the blood pressure medications she was on, life seemed to be almost normal...

...Normal enough that I followed through with my Naval commitments to the USS THE SULLIVANS (DDG-68) homeported in Mayport, Florida (just east of Jacksonville). I left Ohio and proceeded to begin my tour on the ship. We had acquired an apartment in Jacksonville, near Jacksonville Beach, which was very nice; and I spent my days on ship and my nights at the apartment. Rach and I used our webcams to talk constantly (I purchased her a laptop shortly before we left Japan for this reason alone). We talked every day, sometimes multiple times. I was hard charging on the ship. I took over as Leading Petty Officer of the Weapons-Missiles division, with a great young group of guys and girls who continuously performed well and whom I got along with easily. I made many friends on the ship; I also tried getting qualified in as many things as I could in order to prepare myself for the Chiefs board next year.

Life went on like this for a few months. Our daily routine was set. Rach made it through a couple of cycles of the VEGF-Trap with what the doctors called "stable-disease", which means that there had been no substantial growth of any of her tumors since they started the trial. Things were set up nicely for my upcoming deployment. I came home on leave to spend some time with her prior to my leaving for a multi-month trip overseas with my ship. We spent almost every day together; the love and affection had reached new levels, as if they weren't maxed out before! Those couple of weeks were amazing. The intimacy, the talks, the time spent just staring peacefully into each others eyes, those of you who are truly in love know exactly what I heart felt good being able to leave on deployment when my time on leave was up. We had a somber trip to Pittsburgh International Airport to fly me back to Jacksonville. We both cried hard and held each other so tight that nothing, not even an F5 tornado, could tear us apart. Jumping into the unknown, we went our ways...her back to her parents' house, me to my ship where I would be going to places unknown at the hands of the government; but both of us heading into ground where we felt unstable and afraid. Her knowing she couldn't lean on me when and if things got rough, me not knowing if I would have the communication to know if anything went wrong. Being over 8,000 miles apart at one time during this ordeal is something that was amazing that we were able to do.

We had gone about 3 months into the deployment when I received an email from Rach that would change my life. I knew it couldn't be good when she started it out with "Please Don't Worry"! During her last set of scans and labs, it was found that there was tumor growth that was outside of the margins for us to continue the VEGF-Trap clinical trial. We would have to move on to another treatment. Our next option was to go to a treatment called interferon-alpha2b. It is a treatment called immunotherapy, which supercharges the immune system into fighting the tumors as a foreign body instead of ignoring it. Once it has detected and attacked a foreign substance, they alter it by slowing, blocking, or changing its growth or function. The problem with interferon is that the side effects are harsh. They are very flu-like in nature. Right off the bat I was worried I would have to come home, even though she told me I didn't need to just yet.

A few weeks later, I get the word that she was admitted to the hospital for complications to a reaction to a drug that was being used to counter the side effects. Rach, while still a strong girl, was getting beat down by the treatment, and more harshly by the disease. I received an email from Dr. Tarhini telling me how the disease had unfortunately progressed, and how they recommended that I come home as soon as I could.

I proceeded with running two things on my end; an emergency leave request and a request for reassignment due to humanitarian reasons (HUMS). The first would get me home quickly and for a few weeks. They later would extend my time at home and give me a chance to be Rachel's primary caretaker. Luckily, both were approved and I came home on the 18th of November.

Needless to say I was so happy to see her; but the visual clues as to how the treatment and disease have changed her just in the 3 months that I had been gone were staggering and a bit overwhelming. I immediately began to take care of her; driving her to and from the treatments in Pittsburgh, administering her meds, comforting her when she needed it, and whatever else she may have required. Unfortunately, on December 8th, she became overwhelmed by the effects of the disease and side effects, and the pain and nausea were unmanageable by her parents and I at home so we admitted her to UPMC for two and a half weeks, coming home on Christmas Eve night.

During our stay, the doctors spent time adjusting meds and doses to make her comfortable. They have put her interferon treatment on hold until she gets back strength and is a bit less symptomatic. She finally was given a pump to provide her with a constant morphine dosage and a shot called a "bolus" of morphine four times an hour. Her pain is for the most part under control. Her nausea has subsided. During her stay in the hospital she contracted severe lymphadema, which is swelling in the body due to a buildup on lymph fluid. We have her on a portable pump at home for that as well; I do all the infusions of the meds myself through her PICC lines in her arm (semi-permanent IVs). I have had to take on the job as a nurse as well as being a husband and caretaker. Rach needs 24 hours monitoring, so there are many nights I don't get sleep. Sometimes if they can, one of her parents rotates shifts with me. It is definitely not easy.

Well, this long entry brought you up to present time. In my next entries, I will give more present time updates as to what Rachel's status is and what is going on in her life. I will also continue to put facts in my entries regarding melanoma and it's associated causes.

Since this was a long entry I will limit the extras to one point...
  • For those of you who do tan or lay out, think about how you would deal with the pain and suffering that she and her family have gone through. Is it really worth it?
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Snobby Bobby said...

God bless you my friend. I'm the boyfriend of Miss Melanoma (just fyi). What you're doing for Rachel and for our country isn't going overlooked. I agree that when Lori was on interferon it was tough to watch. If the treatment wasn't a beating enough the side effects seemed awful too. I can't even imagine having to actually do the treatments. I've said it many times that Lori is one of the toughest people I've ever met. It sounds like your Rachel is the same way.

Here's to hope that you both will see a day without interferon injections, picc lines and all the other nastiness that surrounds this horrible disease.

You're a good man. The only thing I can say is hang in there.

My prayers are with you both.

vicki said...

thanks for the update tell rachel that i love her and that wish i could be there to give her a big hug and kiss.. i think of her all the time and constantly she is always in my prayers as you are to so take care of her and yourself ok