Why Are There So Many Damn Complications?

The hardest part of her melanoma isn't the cancer itself, it's the complications associated with it. She has been through so much in the last 10 months. Side effect, complication, infection, whatever you could imagine, has affected her.

First it was the vomiting and chills. The pain was next and still prevails even though she is on a fairly high level of constant morphine (She uses a PCA pump to administer her morphine at a level of 6.5 mg per hour with a bolus of 7 mg 4 times and hour). The interferon made her lose some considerable weight, about 50-60 lbs worth. You could see it in her face, in her neck, and especially, in my opinion, in her shoulders. Pictures of her from back in April and now are of a totally different woman. The lymphadema caused by the trauma to her lymphatic system (removal of some nodes and large tumors in others) have caused her to suffer from extreme lymphedema of the trunk and legs, to the tune of a 100 lbs weight gain. She is unrecognizable from the chest up due to loss of weight, and unrecognizable from the chest down due to the accumulation of fluid weight. As if it wasn't enough for her to be in pain from the tumors in her abdomen, the lymphedema has caused an incredible amount of uncomfortableness to her; the tightness of her skin and pressure on her organs is unbearable sometimes. She came down with C-Diff while admitted, which is a bacterial infection caused by too many anti-biotics killing the good bacteria in her GI tract; it results in severe diarrhea and cramping. She had dermititis on her legs from the weeping of the lymph fluid through her overtightened skin; it was itchy and painful. She has had three menstrual periods in the last month, whereas she did not have a period for eight months due to the VEGF-Trap clinical trial. It was spotty at first, took a couple day break, then came back heavy as hell, and then went away for a few days, and came back again, heavy as hell. The period(s) have caused pain in her back and lower abdomen on top of the pain from the tumors and lymphedema. The lymphedema makes the period worse pain-wise for her because of the internal swelling that keeps the discharge built up deep inside until it is released in a bathroom break. Sounds fun, huh?

Speaking of...does any of this sounds fun to you? Could you imagine seeing a loved one go through this, even if it is only one or two of those symptoms? And you still go tanning? God bless you. Please be smart and search the body (naked body) of your partner, kids, and parents if they are under your care. Melanoma doesn't care how young or old you are, what type of skin you have, what background you come from, or what color your hair is. I don't wish this amount of pain and suffering on anyone I may dislike; it is truly a living hell sometimes, seeing someone you love go through what Rach is going through right now.

I ask you all to continue your prayers for her. She needs them now more than ever. Thanks for those of you who read our story and may God bless you.

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 mean...my 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?