May 2011 update

Hello again. I’m not going to lie. The past four weeks were tough. Lazily, I’ve been using Facebook to give minor updates, but this forum is probably better.

Aside from the recent medical issues, my long term disability benefits were denied the first of the year and subsequently my employment terminated 60 days later. As the snowball continued to build momentum, medical benefits (for Gabe and me) ran out as of April 1st. After weeks of phone calls, applications, and letters, come June 1st I will finally be approved for a state prescription and insurance plan. Luckily, Gabe is now covered under his mother’s insurance.

Ok, ok… So, besides this past Friday the 13th (go figure), I can’t remember the last time I felt so tired and weak. Now, my platelet count had been dropping but it didn’t explain the tiredness. Due to my lack of insurance, I was avoiding getting labs drawn for financial reasons. My oncologists insisted I go and get blood done and we found my Hematocrit count (red blood cells) was dropping.

Since the stem cell transplant in Oct. of 2008, my Hematocrit level has always hovered around 29% (a little low but stable). The normal adult male range is 41-53%. Within the last 4 weeks, mine dropped from 29 to 22 to 19. This was alarm enough for my oncologists to draw 17 vials of blood for testing and order a three-pint blood transfusion last Friday. I also took an Immunoglobulin infusion Monday, followed reluctantly with my third bone marrow biopsy.

And the results are in… The transfusion pushed my Hematocrit level back up to 29%. All the blood work was inconclusive. The bone marrow showed no signs of lymphoma recurrence but an abnormality of blood cell development called dysplasia. Blood dysplasia usually occurs in cancer patients who have endured intense amounts of chemotherapy for long durations of time. I do not fall into this category, so again my doctors are left scratching their collective heads. For now, we get to keep running monthly blood tests and in 3-6 months perform another bone marrow biopsy.

It is annoying and frustrating but I am thankful it isn’t worse. My family continues to be amazing. My friends provide me with more support than I expect. And, of course, Gabriel is my shining star. There is still fight in this battered dog. I am not going anywhere soon.

~Cheers
Adam

Why do I Relay?

I am proud to be a cancer survivor and as such want to help all cancer survivors and patients celebrate more birthdays. My grandfather, uncle, father-in-law, close friends and so many more have been afflicted or lost to cancer. I know many who fight and live with cancer every day. I have seen the smiling faces of children with cancer at Dana Farber and the looks of horror on their parents' faces. Cancer could affect your parent, grandparent, son, daughter, friend, neighbor, co-worker or even yourself. Cancer doesn't sleep and isn't prejudice. I want to help and hope to someday find a cure.

I am walking in the American Cancer Society's Peabody Relay for Life for the 2nd year as the Team Captain of the Mantle Cell Marauders. I walk to give back. I walk because I care. I walk because some can't walk for themselves. I walk to show support. I walk because I am a survivor and want others to be as well.

Please help me, my team, and the American Cancer Society to find a cure. Help us to celebrate more birthdays. Help everyone who is a caregiver, provider, patient or survivor. Research is so crucial and we can't do it alone.

Donations can be time or money. No amount is too small and you could save a life. Copy and paste the link below to read about the event and help if you can.

Thank you and cheers,
Adam

http://main.acsevents.org/site/TR/RelayForLife/RFLFY11NE?team_id=840123&pg=team&fr_id=31173

Bit of a Vent

I am by no means “busy” but I do belong to a few groups and keep a steady schedule with my son. I noticed a revelation yesterday when I was reviewing my calendar for March. Upon viewing the pages, there are no medical appointments for the month. I have an MRI, blood work, check-up, and a Lymphoma conference in April but nothing scheduled for March. This marks the first time in over 3 years, I will go one month without visiting a doctor or medical facility. Of course, this might change but I am keeping my fingers crossed.

Life is filled with ying and yang, give and take, push and pull. You get the idea… By the end of March, my employment with Suntrust will officially be terminated. My position was unprotected and I need to reapply for employment with the company. The problem being the closest open position in the company is over 350 miles away in Baltimore. That won’t cut it.

Here is the point.

When my employment is terminated, I will have the option to keep medical insurance through COBRA. Anyone who is on unemployment already knows, COBRA charges through the ceiling. In my attempt to be proactive, I have applied for Medicare and MassHealth. So although, I have no appointments in March, I am hoping to find a way to keep my appointments in April and still afford coverage for Gabe and my list of prescription medications.

I continue to look for work, through the paper, internet, and friends. Social Security gets me by, but a full-time job would be much better. Supposedly I am eligible for unemployment benefits, so I may be able to subsidize my income there. It is a nerve racking waiting game.

Back on the bright side, my health isn’t getting better or worse. I can live with that. Some days are greener than others, and as we say at lodge, “It is better to be seen, than viewed.”

This was more of a vent than anything informational but thanks for reading.

~Cheers
Adam

I'm Back!

It has been too long. I’ll openly admit to being in a funk for a few months. My uncle passed away. Father-in-law passed away. Both to cancer. Long Term Disability benefits were declined. My official employment termination will occur by the end of March. I haven’t had too much cotton candy or carousels recently.

Regardless let me get you caught up.

My health is decent. It isn’t great but decent. I have felt like crap for over a month and been fighting the flu for the past week. My white and overall blood counts are good. Red blood counts are stable. Platelets are low.

Kidney functions started looking funny, so my oncologists dropped my Lasix (fluid reducer) and once again increased my steroid regimen. Good news. I haven’t gained or lost any weight. My kidneys are normal again but an increase in steroids means an increased chance of infection and sickness, hence the flu.

The dual port, I once so heavily relied on for infusion of chemo and other various substances was removed. It wasn’t working properly and needed to be replaced or removed. I elected to remove it. Of course, on my first trip to clinic without the port and I almost pass out when the nurse is placing an IV line. I may not of liked it, but passing out stinks!

Let’s move outside of the medical world to something less meek shall we? Masonry is treating me well. I truly enjoy going to lodge and the fraternity. It could be a meeting night, weekend breakfast, or Mai Tai with the brothers on a Monday. I have met some amazing people and friends I hope to have for life. I, also, recently became a noble member of the Shrine.

I know many will roll their eyes at the thought of spiritual healing but I believe it works. In January, I passed my Reiki 2 attunement. I am involved with a small and fabulous group of practitioners. Your body is just a shell without the strength of your mind. I highly recommend Reiki and other spiritual healing exercises outside of just medicine and physical therapy.

Lastly and most importantly, I can’t forget my son. Gabriel grows so fast. He snaps the fingers on both his hands. He can almost beat me at video game bowling on the Wii. He loves to dance, sing, color, draw, and so much more. Unprompted, he tells me, “I love you, Daddy.” He is a gift to the myself and world.

I’m sure there are things I’m forgetting but there is always tomorrow. Be well!

~Cheers,
Adam