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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Tuesday, December 23, 2008

Back Home...Not Exactly by Choice

Japan is now a memory. A very good memory, at least until the very end. We're back home. Things don't seem so abnormal. Besides having a lump in her neck, Rach feels pretty good. It is really hard to understand how she is so sick when she doesn't feel like it. We're now staying at her parent's house in Hubbard, OH. It's a po-dunk town a few thousand folks short of 10 grand. There's probably more bars than traffic lights here. Rach and I grew up here, went to school here, made lifelong friends here, and made many memories here. We both made decisions in life that got us out of that town...years later, here we are, waiting for the unknown.

The day comes for us to meet with the docs up in Cleveland Clinic. We're to meet with an ear, nose, and throat surgeon and oncologist, Dr. Walter Lee. He's a young looking, soft spoken, gentle man who has a relaxing way about him. He calms us as we initiate the myraid of tests Rach will be going through. She starts by getting her throat, esophagus, and stomach looked at with a strange looking tool she had to get placed in her nose and down all the way into her stomach. It looked quite uncomfortable, but as she does commonly, she "troopered" through it. She concurrently went through various scans; PET, C/T, MRI, etc...and her doctors reviewed her case.

By looking at the scans, it was evident that Rachel's cancer had spread throughout her body; the largest mass being in the lower left neck area (the size of a tennis ball), and an assortment of relatively small tumors located throughout her lymph chain in her abdomen. Due to the location of the mass in her neck and the location near major arteries, it was decided to remove the lump via surgery. Rach hadn't had surgery since we were in Virginia. Those surgeries were all on her legs and lower extremities - away from anything vital, whereas this one would be quite dangerous - near many vital areas of her body. It was the first very scary experience we had since this second bout with the beast has come about (besides the lump finding of course).

I waited in the waiting area with Rachel's parents and our Pastor from our Catholic church (St. Pats in Hubbard, OH), Fr. Tim O'Neil. After 4 long hours, Dr. Lee came out and told us the surgery was a success; she made it through fine. That was the good news. We had been told prior to the surgery that this cancer could have been lymphoma - due to the location exclusively in her lymph system. That would have been a much better diagnosis. Dr. Lee broke it down for us, and the news was quite sombering. The mass came back as being positive for melanoma. That meant she was diagnosed with Stage IV, distant metastisized, malignant melanoma (a1c). Needless to say, we all shared a good cry.

The thing that kept us strong in that time of excrutiating emotional anguish was the fact that Fr. Tim was there to comfort us and Rachel's surgeon, Dr. Lee, said something so simple yet so powerful to all of us. He said: "Those who make it through tough times such as these do so because they rely on the 3 F's: Faith, Family, and Friends". That philosiphy of his had held true throughout our entire ordeal.

After a few week of recovery and ensuring the area of her surgery was healing properly, Dr. Lee recommended we be seen by the Melanoma Specialists at The University of Pittsburgh Medical Center's Hillman Cancer Center. Her lead oncologist would be Dr. Ahmad Tarhini, another soft spoken, kind man who has a way of putting us at ease. With my next entry I will bring the story up through the current time and will continue to update this blog with frequent storied of our experiences while Rachel fights her battle with the hardest foe she (or any of us for that matter) have faced.

  • If you must be in the sun, exercise "sun sense." Avoid sun exposure between 10 a.m. and 3 p.m., when ultraviolet (UV) exposure is greatest, and use a sunscreen with a sun protection factor (SPF) no less than 15.
  • If you must be in bright sun, sunscreen alone may not provide adequate protection: Keep exposed areas of your body covered. In addition to protecting your arms, legs, and trunk, remember your head, neck, and shoulders. Wear a visor or a hat with a brim. Melanoma usually occurs on the head and neck, on men’s trunks, and on women’s legs. Do not ignore changes in moles in areas of the body that are not exposed to sun. Melanoma can occur in these areas as well.
  • Examine your skin regularly, and have your health professional check your skin during any other health exams, or at least once a year.

Friday, December 19, 2008

Living Overseas - Prelude to the Present

Many of the people we grew up with have rarely been outside of the country. Some of them may have never been outside Ohio besides going to Pennsylvania for a little shopping or to visit family. I even know a few people who have never left the Mahoning Valley for whatever reason. This was one of most appealing reasons for my joining the Navy - to see and experience as much as I could all over the world. Rachel felt that way too, and that made it an easy decision for us to try to get stationed somewhere us military folks call OCONUS (Out of the CONtinental United States for you civilians!). When we first started dating and through the first couple of years of our marriage, we lived in Norfolk, VA. It was time to jump into the deep end and live a little!

We moved to Japan in the Spring of 2005. It was amazing to say the least, in all aspects. We made wonderful friends over there; many people were and are like family to us. Having them buffered the anxiety of being so far away from home and the fact that we missed our families so much (due to the incredible distance separating us and the cost of travel we could only visit home once a year). We had our bumps in the road and life sometimes wasn't easy, but we made it through our tour there better off than when we arrived. We visited some very interesting places and did and saw some very cool things that are in my opinion once in a lifetime experiences (having a Meiko dance for us was so special - thanks Betsy!)

Shortly before our transfer back to the US in Mayport, FL to go to my next duty station (about 2-3 weeks away), we were hosting some good friends of ours at our housing unit for a little get-together. Near the end of the night, while sitting at the table, Rach was rubbing her face and neck to relieve some stress I guess; as her hand reached the bottom of her neck around the area of her left collarbone, she felt a lump. Needless to say, her mood changed right then and there. It was like she had a premonition that something was seriously wrong. Immediately, she asked me to come and feel it, and then she asked her friends to do the same. We tried to think positive and tell her it was swollen glands or something and maybe she was getting sick; she knew though. She called the hospital and made an appointment with the ear, nose, and throat doctor first thing the next morning.

They did what is called a fine needle aspiration. A needle with a fairly long tip was inserted into the lump, or mass; using that needle, the doctor/surgeon pulled out liquid from the mass to send to the lab for a biopsy. We waited an anxious day for what Rachel knew was inevitable; they told us the next day when we returned that the biopsy from the aspiration came back as showing a malignancy, meaning it was cancerous. There would be know way to no for sure if it was melanoma or not without surgery; the liquid from the mass that was biopsied did not have enough volume or structure to be able to tell what kind of malignancy it was. We knew she had a previous bout with melanoma, therefore, we had an idea what the news would be.

The ball was quickly set into motion by all of the folks involved with doing so. The case managers and doctors at Naval Hospital Yokosuka worked hard to get Rachel MEDEVAC'ed (Medical Evacuation) back home. We decided it was in our best interest to have her transferred to The Cleveland Clinic in Cleveland, OH. It was within an hour or so from our parent's homes, it has a great reputation for quality care, and it was "in-network" for our military health insurance (TRICARE Prime). She was sent home within 72 hours. Meanwhile, I worked with my command, Afloat Training Group West Pacific, to administratively get things in order for my early return and plans for once I met Rach back in Ohio.

Within a week of the initial diagnosis of the mass in her neck, she was home, our household goods were shipped to Florida, and I was on a plane to meet her back in Hubbard. I cannot begin to explain the gratitude, love, and most of all appreciation for everyone involved with helping us with everything in Japan, especially assisting with expediting our return. Many of those same people were the ones who befriended us, mentored us, shared experiences with us, and so much more.

Once at home, we had a few days before we met with the fine folks at The Cleveland Clinic. Some major events in our lives occurred there, and I will go into them in depth in my next entry...

Some more cold, dark, hard facts about melanoma...

  • Melanoma is the #1 diagnosed cancer in women under the age of 30 and is the leading cause of cancer deaths of women aged 25 to 30.
  • Melanoma, while being the least rare of all skin cancers at 4% of all cases, however, it accounts for 79% of all skin cancer deaths.
  • 62,480 new melanomas will be diagnosed by the end of 2008.
  • Melanoma diagnoses are increasing faster than any other type of cancer.
  • More than 1 million cases of skin cancer will be diagnosed this year.
  • There is a 1 in 5 chance of you developing skin cancer in your lifetime, and a 1 in 33 chance of developing melanoma.
  • 1 American dies every 65 minutes of melanoma.
  • The incidence of melanoma has increased 690% from 1950 to 2001, and the overall mortality rate increased 165% during this same period.
  • The estimated total direct cost associated with the treatment of melanoma in 2004 was $291 million. Of that total, office visits account for $101 million; hospital outpatient treatment - $76 million; prescription drugs - $78 million; hospital inpatient treatment - $35 million; and emergency room treatment - $1 million.

Wednesday, December 17, 2008

The Beast is Awakened

On a warm, late summer day in 2003, Rachel and I were hanging out with friends in the back yard, sitting around the pool and conversing. The conversation somehow turned to moles and other anomalies on our bodies. Rachel noted a mole that had started to turn darker than normal on her left thigh. The mole had been present on her body since at least her high school days, as was proven by looking at old pictures after the fact. One of Rachel's friends, a surgical tech at the time, said she should get it looked at by the dermatologist soon. We made note of it, and scheduled an appointment within a couple of weeks of that day in the back yard.

So, the day comes where she goes to get checked out by the dermatologist. Let it be noted that Rachel is by nature a fair skinned Caucasian woman; her normal skin tone is quite light. She has a multitude of freckles and moles scattered over the majority of her body. The mole on her thigh worried the dermatologist, so they did a "punch biopsy" on it. It was comparatively large, with a radius of 7mm. It was sent off to the lab while we waited for the results.

We were nervously anticipating the response from the dermatologist, when we got the call that put this roller coaster ride in motion. We were told that the biopsy results from the mole on Rachel's thigh had come back positive for malignant melanoma. Needless to say we were upset by the news. We really didn't know how to react at the time; neither of us were prepared for the news of one of us would be diagnosed with cancer (any kind of cancer!) at age 25! We had a good cry and after that bucked up and decided we would fight this beast no matter what it threw at us. At this point she was at least a stage 1...

A week or so later, she was scheduled for the wide incision where they remove all cancerous tissue from the original area of the malignancy. It was her first surgery. It was low risk; however, once it was complete, she would have to have a JP tube inserted to drain fluid from the wound area, and she would be admitted for a few days. Unfortunately, shortly thereafter, she would have to go through a sentinel lymph node biopsy, which required another surgery, a minor one to remove it and check for melanoma "mets" or metastasized melanoma cells in the first lymph node that pulls toxins from the area of the original malignancy. The results come back as malignant; the melanoma had metastasized to her sentinel lymph node. Stage 2, check.

Because of the malignancy in the sentinel node, she had to have a regional lymphandectomy in her left groin to see the extent of the spread of the melanoma. Already feeling beat down, we buckled down and she went through her third surgery. Being the trooper she is, she made it through well, and the news, while upsetting, was not as bad as it could have been. The bad news: There was melanoma present in some of the regional lymph nodes...she is stage 3. The good news: The amount found was quite small; just a tad bit higher than microscopic amounts were found. She would have to be put on Interferon treatments.

Not even three weeks into the initial Interferon treatment regimen, Rachel's labs showed severe increases in her liver enzymes. Due to the minimal amount of melanoma found in the regional lymphandectomy, and the fact that this interferon was damaging her liver so badly, the oncologists suggested we stop the treatment.

Was it the right decision? Should we have pressed the issue? Looking back in retrospect, I almost regret not pursuing things a little further. Of course, at that time, I agreed with the doctors and figured all would turn out well. We finished out my tour of duty in Norfolk, and I got orders to go to Yokosuka, Japan in 2005. Despite her medical history, she was cleared to make this 3 year tour with me. Things went great for almost the entire time we were overseas...more to come on that in my next post.

Tanning beds produce more than 3 times the amount of UVA rays, affecting deeper tissue and more apt to cause long term skin damage, than the sun. Long term effects of exposure to these UVA rays is linked to malignant melanoma, damage to the immune system, weakening and loss of elasticity of the skin's inner tissue. If you go tanning, you double your chances of developing skin cancer. Tanning is the body's response to injury caused by exposure to the skin, and can cause age spots, crow's feet, and most of all, wrinkles.

Tuesday, December 9, 2008


Have you ever met someone and just known they're the one? That was the case for me back on the day before September 11, 2001. That's right; before all of the shit hit the fan, I had met (for the second time in my life - more to come on that) my future wife. Her mane of flowing red hair, her black Harley-Davidson t-shirt tight on her boobs, cut down the center to show off cleavage, and the remarkable smile she radiated throughout the entire place made her irresistible to me. She even commented to me later on in the evening while I was at the jukebox, "You know you're going to marry me"...she was right on with that prediction...

Rachel Beasley was some girl who I knew as one of my younger sister's friends in grade school. I picked on her like an older brother does to his sister's friends, and never thought twice about it. Her sister was a grade above me in elementary school, her mother taught me while I was in elementary school, and new her father as a basketball coach at that same elementary school. I grew up knowing her and her entire family.

Dating her and getting serious was easy. I knew I loved her within a week or so. I never told someone I loved them that fast after starting a relationship. Heck, I waited a whole month to have sex (which for me at the time was quite a feat)! All that aside, we just got along so well. We never fought; we thought along the same lines more often than not; heck, we would even make fun of the same people as we sat in the food court at the mall people watching. Her family was just as nice as I had remembered them. I got along with all of them; they made me feel so comfortable while dating their daughter.

S, after a couple months of dating, I asked her parents for her hand in marriage after our Thanksgiving meal in 2001, and in turn proposed to her in December shortly before Christmas that year. I had bought a ring she had stated she liked, and wasn't sure how to pop the question...then, on December 22nd, 2001, I had a good setup. She had a bad day. One of those days you just wished you stayed in bed all day. She cut a tire on the way to work, making her late (she worked at Quaker Steak and Lube in Sharon, PA). Work was bad; she had lots of jerks and low tippers coming to the restaurant. She told this to me on the verge of tears and I went and got her a card to cheer her up. Well it just so happened that her parents had a pewter stocking Christmas ornament that they had just bought, and as I was telling them about my plans later that night to propose to her, they gave me the ornament and said I should use it somehow. I saw I could put the ring inside the stocking. Well, here we go; card and first Christmas ornament. She would be happy at the end of the day no matter what. I get to the restaurant, ad it is packed but she is getting off soon. I go down to the bar to hang with a few of her friends who had already punched out, and of course I told them the plan and they went along with it. Rach comes down, sits next to me, and I get her a beer. She chugs half of it down in one gulp, hugs me and on the verge of tears says how happy she was I came to be with her. As she says that, I pass her the card and the stocking ornament. She opened the card and enjoyed it...and as she looked at the ornament, she sat there puzzled. I told her, "Look at it, babe"! She couldn't fighure it out for a few more minutes until, bam! Her eyes lit up, she opened the clasp, and wham! There's a nice fat engagement ring! I turn her around, got on a knee, and in front of over 100 patrons who by that point were all watching, asked her to marry me...of course, she said yes, and "The Lube" erupted with applause and champagne, etc, as we kissed and hugged and received congrats from all around us.

It was a great few months to start out what would be the love of a lifetime. Problems were so far out on the horizon that neither one of us saw what we would face in the years ahead. The thing is, the problem was already part of her body. It was something normally as benign as an odd hair, a little pimple, a light freckle, a harmless birthmark. It was a mole that had in her 24 years received many a dose of sunlight and even more UV rays from multiple visits to tanning beds. Rach was quite tan for our wedding. Little did she know that the appearance she enjoyed showing would put her into a fight for her life.

More to the next few days.

Ladies and Gents...please be careful around those UV rays.