Living with Lymphoma

May 2011 update

2011-05-15T22:17:00.002-04:00

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?

2011-04-11T22:54:00.002-04:00

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

2011-03-04T07:55:00.001-05:00

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!

2011-02-28T17:53:00.001-05:00

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

Passing Away

2010-11-17T09:28:00.001-05:00

In God we trust. It is what it is. Everything happens for a reason.

Believe what you will. There is only one certainty in this life and that certainty is death. This morning Nov. 17th, 2010 at 5:17am, the grim reaper came and took my Uncle Harvey. His 2-year courageous battle with renal cancer came to quiet end.

He struggled through experimental treatments, surgeries, weight loss and gain, taste changes, loss of feeling and movement in his arms, and finally the inability to speak. It is horrible to say such words, but I know his passing is a blessing, so he and his family need not suffer anymore.

Rest in Peace my uncle, brother, and my friend.

Gobble, Gobble

2010-11-16T08:05:00.000-05:00

With my favorite holiday only a week away, I enter into this joyous, family, and friendly oriented time of year with a heavy heart and mind. Besides, my son’s 4th birthday in just 6 days, I am laden with questions, concerns, and deep thought.

I believe in the rule of 3. Things happen in 3’s. If you do on to someone, it will come back to threefold. Already this month, the son of my mom’s friend passed away from cancer. Just yesterday, she found out a member of her book club passed away from cancer. And my uncle is currently dying of renal cancer. Hospice comes in daily to clean him, move him, medicate him, and whatever else is necessary at the time. He can’t move on his own and has all but lost the ability to speak. Three losses…one month…all cancer.

I ventured into the world of Reiki and found energy within me I didn’t know existed. However without warning, my Reiki Master was released from her position on Friday afternoon. I will remain her student and patient outside of the office walls, but am bothered by this decision as the office nor her patients were notified or could have predicted this coming.

Friday morning I close one chapter and attempt to move on with my live. At 8:30am at Salem Probate court, I will walk into a divorce hearing to take the final steps into a year and half long separation. As we say in my religion, this is a mitzvah (blessing). There is no denying divorce is the best option for my eventual ex-wife and myself, but I know we both made mistakes and it never had to come to this. I hope only for Gabriel‘s benefit, that our relationship stay amicable so his best interests are never compromised.

Seeing this is a blog about my health, I might as well throw in something. I joined a gym. Yay!!! The more amazing aspect is, I’ve used it. 3 visits in 2 weeks. My knee feels worse if not better and my weight is going up not down. (this could be due to the reduction in Lasix, which is causing more adema to swell in my arms and legs.) I’ll know more about the increasing kidney functions, the removal and replacement of my IV port-a-cath, and eventual total knee replacement in the following months to come.

I’d like to wish my friend, Sarah, a Happy Birthday. Her mother, like I, is a Mantle Cell Lymphoma stem cell transplant survivor. I also want to wish my son, Gabriel, my motivation in life a happy 4th birthday. Chuck e’ Cheese will never be the same, nor will my house. I purchased him a starter drum kit. I know, I know….what was I thinking. Gabriel, Daddy loves you.

And in closing, I want to congratulate my brother. He is being honored Thursday morning at Barnes-Jewish hospital in St. Louis. He is 1 of 10 recipients for an award, which is only given to employees who are nominated by their peers. Barnes employs over 9000 workers. Do math. It is quite the honor and I couldn’t be more proud. I only regret my inability to share the moment with him in person.

Happy Thanksgiving everyone. Be safe!

~Cheers

Happy Halloween - Don't Fear the Inevitable

2010-10-31T01:44:00.000-04:00

Allow me to indulge myself and then proceed to another topic. As my 2nd birthday passed by, I can’t help but see how far I’ve come and yet how far I still need to go. Some conditions get better. Some stay the same. Some get worse. Some are just starting.

The lymphoma is in complete remission. My blood work looks stable aside from some heightened kidney functions and low platelets. Although, my legs are strengthening the knee joint itself continues to weaken and get worse. It will require a total knee replacement at some point in time. Lastly, the IV port (placed on May 14, 2008) is finally failing and needs to be replaced. This will require a minor surgery to remove and insert a new port. For the average patient, a ½ inch incision is a 2-3 week healing process. For me, it is a 2-3 month healing process, with a high risk of infection.

In better news, Wednesday Nov 3rd I will take my Reiki 1 attunement. I’ve been receiving Reiki healing for several months and am now ready to start practicing myself. November will be busy. Besides Thanksgiving being my favorite holiday, my divorce hearing is finally scheduled for Nov 19th and my baby boy’s 4th birthday is Nov 21st. Things happen in threes. These will be three events to celebrate. Thanksgiving is just a great bonus!

Yesterday, hospice was called in to attend to my uncle. Uncle Harvey (my father’s only brother) has been fighting renal cancer for close to 2 years now. Unfortunately, it looks like the fight is coming to an end. There is nothing I can do to stop the inevitable and after seeing him a few months back, I can’t bring myself to see him again under these conditions.

Some may call me a coward or weak. I understand the need to be surrounded my loved ones in a time of need but it hits too close to home for me to be with him now. It sounds horrible but I’ve made my peace. I can’t witness him now, without visioning myself in his place. My father understands my feelings and I hope the rest of my family does as well.

When my uncle moves on, it will not be easy for me. As the appointed Chaplain of my lodge, I will be required to do ritual work at the funeral ceremony. I am hoping to find the strength for my uncle, my lodge, my family, and myself to fulfill this obligation. My uncle enjoyed Masonry and wished he could have been more involved. I know he was proud to hear of my raising and appointment as Lodge Chaplain. If only in death, I hope to honor our brotherhood as Masons at his funeral, so he can see me one last time in full tuxedo, apron, and jewel of my profession.

To all those, who sent prayers and gave their well wishes to my uncle, I thank you. Only one person knows how long we have in this life. We just need to make the most out of that short time we’re given.

Two other quick thoughts. My father is going in to the hospital Tuesday for his 3rd catherization and stent-placement in the past month. Hopefully, third time is a charm and his cardiologist will finally provide him with some much-needed relief. Also, I want to congratulate my brother on being nominated and winning the David AG award at Wash U. It is a prestigious award only given out to 10 recipients of the hospital each year. It is a great honor and I couldn’t be more proud.

Best Wishes to all on Halloween. This message is not meant to be scary, just honest.

~Cheers

Reflections

2010-10-11T08:12:00.000-04:00

There are all sort of calendars and birthdays. For instance, I celebrate 3 birthdays. On May 19th, I celebrate my actual birth into existence. November 18th is my Masonic birthday. The day of which I was raised to the Master Mason level of Free Masonry. And lastly, October 23rd…my 2nd birthday since receiving stem cells in 2008. As this date is rapidly approaching, I feel it is time to reflect on my past year’s events and progress as well as setbacks.

Thankfully, I no longer wear a surgical mask or gloves when leaving the house. I can freely attend parties, visit the mall, movies, restaurants and even travel on public transportation, subways, buses, boats, and airplanes. My oncologists still advise me to visit and travel these places during lower traffic hours, as my immune system will always be compromised. That is where good ole’ fashioned common sense comes into play.

I was able to participate in Gabriel’s Halloween parade and his 3rd birthday party. I went on field trips with this school. I read his class books and attended Father’s day and other school events. We met Santa Claus together and went on 2 duck tours. I watched him learn how to write his name, order for himself at a restaurant, become potty trained, built Lego towers taller than me, and just enjoy being a kid, playful and free.

I got on a plane for the first time in 2 years and traveled to St. Louis to visit my brother, Beau, and his family. He allowed me to get drunk, no matter how obnoxious I became. He introduced me to his Methodist church and took me to an awesome Mongolian grill and kick-butt Super Bowl party.

Proudly, I was raised to the 3rd degree of Free Masonry by my father. It was an honor for him to do so and now I sit beside him in the East of our lodge as Master and Chaplain. The Free Masons are an unbelievable group. Sad to think, that if I had never gotten sick, I would not have had the time nor inclination to get involved. Some things do happen for a reason and I am thankful for this one.

I have attempted to be here for my parents as they are ill as well. I know they take allot of verbal abuse from me and I need to find a better outlet for my ongoing frustrations. They both do so much to help me on a daily basis from dealing with Gabe, feeding me, and not to mention giving me a place to sleep. Perhaps my newest endeavour into the world of Reiki will calm my nerves, so I may focus my energy on positive thoughts and stop taking life out on the one‘s I love.

Lastly, my health is what it is. Blood work is stable for the first time in 2 years. My overall cholesterol is the best it has been in a decade. I have a left knee that will undoubtedly need to replaced at some point in the near future. My back compensates for the balky knee causing daily pain. However, given these physical setbacks, I am mentally strong and ready to take on the world.

On November 4th, there is a hearing date in front a judge for my divorce. Gabe will always be my son but his mother and I can finally move on with our individual lives. My life…what will I do with the time I am now given?

As I mentioned, I am beginning Reiki 1. I am compiling my journal and blog entries into an eventual book. I continue to create and try new recipes for another eventual cook book (possibly co-written with my mother). I aspire to be a better father, son, brother, co-worker, friend, and person. Nothing in life is set in stone, but if you are waiting for a hand out…you might as well just step out of line.

I wish all my family and friends a happy fall season. This is the best time of the year. Best foods, cool weather, outdoor fire pits, changing of the trees, good times and good friends.

~Cheers

Man in the box

2010-08-25T12:01:00.001-04:00

“I'm the man in the box
Buried in my sh*t
Won't you come and save me, save me” - Alice in Chains, Man in the Box

This is how I felt twice a day for 4 days during the conditioning process for the stem cell transplant. Allow me to indulge you.

As mentioned in the past, conditioning for the stem cell transplant takes place during the first 7 days of admission to the hospital. Two days of chemotherapy (citoxan) and 4 days (7 treatments in total) of double day full body radiation.

At 9am, my nurse rolled into my fish bowl of a hospital room with a wheelchair, blanket, my chart and bucket (in case I threw up). We would take the elevator down to radiology. To help relax, I would bring CD’s for my listening pleasure during my 30 minutes of radiation.

The radiology nurse laid me down on a flat table. She would place a plastic see-through box over my face (apparently the mind is a terrible thing to waste or in this case radiate) and then she high-tailed it out to the safe-bunker and flipped the switch. The X-ray light turned on, a buzzing in the room began, and so did my sobs. It felt kind of a tanning bed but with much a different end result.

This process repeated itself at 4pm. And then 9am. And then 4pm. And every time, no matter how well I was prepared or what music I brought, I cried. Tears streamed down my cheeks, while the buzzing continued and that stupid X-ray light flickered in the corner of my eye.

I cried for my son growing up father-less. I cried for my parents who would have to bury their youngest son. I cried for my brother, who was giving me his blood in an attempt to save my life. I cried because I was terrified. I cried like a baby. I cried because I needed hope. But whatever I cried for, no resolution was found in that f*cking box over my head.

Helpless, hopeless, and in disbelief. I was “the” man in the box. Buried in sh*t. And no one came to save me. I was alone. In some aspects, I still am. Don’t take this as a cry for pity or attention, just the way I feel at times. Don’t feel sorry for me. Nobody brought this on. People everyday are fighting the same battle. We don’t want or need your pity, just your support and sometimes our space.

I said this was going to get real. Here comes the pain. My pain. It may be slow coming, but it will come.

~Cheers
Adam

Update and prayers

2010-07-29T21:11:00.002-04:00

Just a quick update.

I went to an orthopedic specialist yesterday. He took x-rays and manipulated my knee (which now hurts worse than before) and it seems I have a slightly displaced knee cap and a bone spur. I have an MRI scheduled for next Wednesday to see if there is any further damage. From there, I will follow up with orthopedic and discuss a treatment plan. Could be anything from simple physical therapy to knee surgery.

Presently, the major concern is my ability to heal and control pain. After speaking with my oncologist this morning, if surgery is necessary there will be certain precautions we need to take medically to assure the best possible outcome. My timetable for healing is double that of the average healthy person. The only prescription to help my knee right, besides ice and rest, is anti-inflammatory medication (Ibuprofen i.e. Aleve, Motrin, Advil).

Secondly, Tuesday's blood results are back and things are somewhat encouraging. White cells were good. Red cells were stable (for a change). Platelets were up from 80 to 100 (norm is 180 or above). However, because my platelets are low, I shouldn't take any anti-inflammatory medication because the increased possibility of bruising and excess bleeding is too great.

I'll have more to write once the MRI is performed.

I would like to take this opportunity to send out prayers to Jessica's mom, who recently had a stoke, and Laurie's nephew, David, who is trying to recover from massive brain trauma. Please pray for their well-being and families. They need strength and we can help.

~Cheers
Adam

God's Punishment

2010-07-23T19:39:00.001-04:00

I had a very interesting conversation last night with someone I always believed to my soul mate in life. She is happily married and the mother of two. We hadn’t spoken in almost 10 years but the thought of her still warms my heart. I believe that in life we all come across and meet our soul mates. Not many will stay with or end up with that person, but that isn’t my overall point. I am comfortable knowing our paths crossed and she had a lasting impression on my life.

Now to my point which is a little off topic from my normal medical updates. In our discussion, she asked if I felt that getting sick was part of God’s plan for me. As most of you know, I am spiritual but not overly religious. However, this was my response.

Sickness and disease are God’s way of getting back at mankind for taking the gifts he’s provided to us for granted.

We were given a beautiful planet and ruined it. We were given the ability to love but hate so quickly. We are born into life with no prejudices but racism and anti-Semitism towards religions still exists. Homelessness and starvation flood our streets. War is all around us because mankind is never pleased with what they have. Everything needs to be bigger and better than what your neighbor has.

“God” or whomever is in charge of our lives doesn’t appreciate this, so sickness and disease are his (or her) way of punishing us. And unfortunately like cancer, he isn’t overly particular about who it hurts or afflicts. Everyone is innocent until proven guilty but he punishes everyone because we are all guilty for taking life for granted at times.

For some reason, I feel this post my stir more conversation then most things I write, but it was something on my mind and didn’t want to hold back. Please express your thoughts. I look forward to your feedback.

~Cheers
Adam

If it's not one thing, it's another.

2010-07-15T11:28:00.003-04:00

In the past 8 days, my oncologist has made reference to my survival of Mantle Cell Lymphoma in more than one way. First by saying, “Can you believe (that) in 4 months, it will be 2 years (referring to when we started the stem cell transplant). Second by saying, “Well, you are our ‘wonder’ patient.” Making reference to the fact that I’ve broken the mold on diagnosis, treatment, and survival for this lymphoma.

As refreshing and yet disturbing as these comments are, the problems keep coming.

In the past two months, we (my oncologists and I) discovered some new abnormalities in my blood. White blood cell counts, lipid levels, kidney functions, and electrolytes are normal. However, my overall red blood cell (RBC) count and platelets are low. This discovery caused them to drain 17 vials of blood yesterday in hopes of finding an answer. But as we‘ve found in the past, my body doesn’t follow any true diagnosis for disease or disorder. Allow me to explain further.

Hemolytic anemia is the abnormal breakdown of RBC’s either in the blood vessels or else where in the body. Microangiopathic hemolytic anemia or MAHA is a subgroup of hemolytic anemia caused by the tightness or constriction of blood vessels. When RBC’s are looked at under a microscope, they look fragmented and edged, instead of circular as blood cells should. Currently all signs point to the diagnosis of MAHA. However, my other blood work (kidneys function, etc), and lack of heart problems, jaundice or pallor make me yet again an anomaly who doesn’t fit the bill. My team of doctors has no plan of attack yet and we are still awaiting more blood results.

Moving right along, let’s discuss my left knee. For the past several weeks, I have experienced pain, swelling and discomfort behind my left knee. After years of burdening the load for a bum right knee, I assumed wear and tear had finally caught up. Of course, I am wrong. There is a chance, torn cartilage or ligament damage will be found, but after yesterday’s ultrasound we discovered a Baker’s cyst.

A Baker’s cyst is the benign swelling of a bursa behind the knee joint. It may be caused by other damage already in the knee and typically there is no true treatment plan. If it becomes too painful and discomforting, then is may be drained and a cortisone shot could be used but in most cases it either bursts internally or reduces on its own. Leg elevation, ice, and relaxation are usually the treatment plan.

Needless to say, I ran around from 8:30am to 5pm yesterday. Peabody to Dana Farber, check in, blood draw, check in again, oncologist appointment, check in again, back to blood draw, kill time in cafeteria for an hour waiting for an ultrasound, drive to Salem Hospital for knee ultrasound because Brigham nor Dana Farber could scan me, drive back home to Peabody just in time to see my mom arriving with Gabriel from daycare. If the cancer doesn’t kill me, the running around will.

So in a nutshell, I’ve gone from having a blood disease to now having a blood disorder. I have a royal pain in my knee instead of my ass. My doctors are shocked yet happy I’m alive, so everything else is gravy.

That’s all for now. I hope to get back to telling tales of my experiences in the hospital during my stem cell transplant soon. It seems like life keeps getting the way. Be well!

~Cheers!

Hello Summer!

2010-07-09T23:08:00.001-04:00

Welcome to the summer edition of Living with Lymphoma. You were probably hoping I would stay away, but I’m back!

In cancer related news, thankfully I am still in full remission. Biopsy stitches are removed and the area is healing well. Red blood cells and platelet counts are low, so next week I’ll find out if they’ve recovered or if I need a transfusion.

The American Cancer Society (ACS) Relay for Life was a huge success. I have to thank my team, Shawn, Sue, Marie, Jenifer, Jamie, Haley, Meghan, and Laurie. We raised just shy of $3,000 as a team and will be noted a Bronze medal team by the ACS. We are already planning for next year’s walk. How to fundraise better, make the campsite better, and how to recruit more members. It was an awesome experience and am excited to participate again. Thank you to all my friends, family and companies who contributed time and money to making the event such a success.

In non-cancer related yes still medical news, knee surgery could be in my future. There is a snapping, stiffness, and pain in my left knee. For those who know don’t, I have had 3 surgeries on my right knee including a complete ACL reconstruction. The left knee has carried the load (no pun intended) for 15 years now and it was bound to give way eventually. My oncologist checked out the knee and it definitely isn’t drug or steroid related. Hence, I have an appointment at the end of the month with a orthopedic specialist.

The back is still sore and I should have gone back to physical therapy by now. However I am waiting find out about my knee. Can’t stand, walk, or do much of anything for more than 30 minutes without the back flaring up.

Outside the medical world, things aren’t too shabby. Finally passed papers on the short sale for the house in Dracut. Starting to look into new living arrangements to get me some privacy but still stay close to home in case of medical emergencies concerning myself or my parents. I also decided I can’t hide in my bedroom forever and have been separated long enough, so it is finally time to start dating.

My father was nominated and elected the new Master of Jordan Lodge in Peabody and has asked me join his line of officers as chaplain. Of course, I accepted. This will require the purchase of a tuxedo, but it will be worth it. My brethren in the Masons have helped me a great deal and I am looking forward to the opportunity to sit with my father and take on an active role in lodge.

Has always my son is amazing. He is growing like a weed, talking up a storm, wanting to read, and learning to swim. There are just not enough words to describe how I feel for my son. Gabe…Daddy loves you!

Ok, so this has become a slightly long post. Hadn’t written in a while. Sorry to drag on. Hope everyone is enjoying their summer. The fire pit will be open in the backyard soon.

~Cheers!
Adam

Tears of Joy

2010-06-13T19:21:00.001-04:00

Whoever says doctors don’t work on the weekend, obviously has never had cancer and haven’t met my amazing oncologists from Dana Farber and Brigham & Women’s hospitals of Boston.

I received the best news possible. My oncologist just called (yes on a Sunday night) to inform me, that all the biopsy results are complete and I am still in complete remission. My world can finally start turning again.

I am not a patient person, so waiting to find out if I was about to battle cancer all over again was horrible. The past six weeks were absolute torture. There was no relief for the havoc my stomach went through worrying. There was no pill strong enough to give me a good night’s or on some occasions any sleep at all.

In the past six weeks, I questioned my faith in life, my strength to fight and my will to want to continue if the results were different. Luckily, I am no longer in a position to worry about these things.

I want to thank my parents for putting up with my horrible disposition during this time. I want to thank all the prayers from family and friends. I want to thank my brother for his willingness to travel back to Boston on a drop of a dime to give me another transplant if necessary. And of course, my beautiful son, Gabriel, who can always make me smile.

There are no right words to truly describe my happiness at the moment. Needless to say, I will probably end up crying myself to sleep again tonight, but it will be for much better reason.

~Cheers,
Adam

Fear the Reaper

2010-06-08T01:02:00.000-04:00

Everyone is going to die someday. It might be of old age, a car accident, disease, heart attack, murder, or just falling in the house. Most people have a fear of death because we fear what we don’t know or understand. I’ll be the first to admit that I DO fear the grim reaper. What I don’t fear is failing, if I know I’ve tried my hardest until now.

With biopsy results looming of a possible lymphoma relapse, I realize I AM going to fail. I have fought my hardest for over 2 years. Lost my wife. Lost my house and lost several friends on the way. Spent more time in the hospital then anyone should have to who isn’t getting paid to be there. Shit myself because I can’t control my bowels. Threw up every night at 3:30am for over 4 weeks straight. Couldn’t drive a car for 6 months. Was hospitalized twice inexplicably. Broke my back by simply trying to pick up and hold my son. And at the end of the day, I thought I broke the mold and won. But I’m wrong.

I take pride in knowing I fought hard and hopefully I will find the strength to fight again if I have to. But the truth is, there is NO cure for Mantle Cell Lymphoma. I may have to restart chemo, radiation or have more infusions or another stem cell transplant. Truth is…no one has ever beaten Mantle Cell. It is rare, aggressive, and a killer. There are ways to slow it, but it will come back, and each time it does, the treatments work a little less to contain it.

Most medical professionals would say I’ve done good making it this far. The surgeon who took my first biopsies over 2 years ago now, couldn’t even face me with the diagnosis. He called me on the phone because he actually thought he was giving me a death sentence. My oncologists are calm now, because they know I am scared to death. And I know they gave me the medical world’s biggest, baddest Mike Tyson upper-cut treatments to try and beat this disease, because it is what it is. A killer.

The moral is I fear failing and death. Unfortunately, I will fail (probably sooner than later) and will die. I hate the thought of not seeing my little boy grow up. I hate the thought of not having control over my own destiny anymore. I’ve always been a glass half empty guy, but I also always tried to be the life of the party. I’m not sure how more parties I have in me, but I’ll try to make a few more waves before my ship sails.

Any words of inspiration are welcome. Right now I could use the help.
Thank you.
~Cheers
Adam

Trust what they say

2010-05-07T07:12:00.000-04:00

I would like to think I can take a person’s word a gospel, but usually I need to learn through my own experiences. However, when a seasoned nurse gives you sound advice, I suggest you take it and not test the waters.

I learned a few things the hard way during my stay at Brigham and Women’s. First, throw your pride out the window. If you need help, then you better ask, because whatever is about to happen, you probably can’t handle on your own. Second, don’t feel bad about making or causing an accident. I now give my son this advice, as some times in life, accidents are unavoidable. Third, when a nurse gives you advice (helpful hints) as to what to expect and how to prepare, don’t think they are blowing smoke up your butt. They have seen it all and know a whole lot more than you.

This brings me to a funny and somewhat gross topic. There is no such thing as a “Dry Fart” in the BMT (Bone Marrow Transplant) ward. A nurse told me these exact words 3 days into my 4 week stay in the hospital. Humility is an awful thing to learn in a moment’s notice.

Imagine yourself, laying in bed, watching TV, and that normal gassy feeling hits your stomach. No ones around, not a big deal. Just let the gas go. Whoa! What the F’ck! Crap! Literally, crap. Ok, first time was a test. Damn, she was right. Second time was all my fault. Shame on me. Third time, I couldn’t get out of bed in time. Talk about embarrassing. A 30-year old male barely being able to control his bowels. I repeat. Check your pride at the door.

So, Yes! There IS NO such thing as a “Dry Fart” in the BMT ward. Almost as bad as my first two nights in the hospital, when the nurse hooked me up to Lasix (a diuretic) while I was sleeping to help me pee out the extra chemo. Nothing like waking up every 15 minutes to take a leak. I suppose it is better than shitting your pants for a week, or not being able to fart for 6 months but not by much.

Don’t go anywhere. The real fun is just beginning. There will be crying, vomiting and fun reality to come. Please stick around you don’t want to miss this.

Happy Mother’s Day weekend to all!
Cheers,
~Adam

4-star treatment

2010-05-05T07:24:00.000-04:00

Picture this. You have your own room. You have your own bed. You have your own bathroom and shower. You have a TV with cable and a DVD player. You have a view of the city. Someone makes your bed, cleans your room and bathroom, brings you food and drink to order, and bathes you everyday. Sounds pretty good right? Where do I sign up? Let me further elaborate.

Your room has a glass wall and door. Your house is a semi-circle corridor of 12 exact same rooms. You are under constant surveillance in your self-contained fishbowl. You aren’t allowed to leave your enclosure without safety mask and gloves. Every four hours whether you are asleep or awake, someone interrupts you and every 12 hours you give blood. Your intake and outtake (that’s right, good ole’ #1 and #2) are kept for examination and measured several times a day. Now how does this sound? That is taking 4-star treatment to the extreme.

Yes, this is the life I led for 4 straight weeks in the BMT (Bone Marrow Transplant) ward at Brigham & Women’s hospital in Oct and Nov of 2008. However, what I just described may actually sound like 4-star treatment after I divulge more of my experiences.

I’ll allow you to digest this information and if you want to stay with me, more fun will follow.

Happy Cinco de Mayo!
Cheers
~Adam

Time to get real

2010-04-20T13:41:00.002-04:00

“To thy own self be true hamlet.” - William Shakespeare, Hamlet Act 1, scene 3, 78

I started writing this blog to give friends, family, and complete strangers insight into my cancer and treatments and hopefully providing some inspiration to those fighting their own battles in life. Also, I found it therapeutic to write about the events I’ve experienced. I needed to empty the thoughts polluting my mind for so long now.

However, it comes to my attention, there are details I purposely omitted because I felt they were too graphic or personal to divulge. These details are the ones which keep me awake at night. The details that make certain smells, TV programs, music, etcetera almost unbearable.

I will start story-telling about some of my more graphic, emotional, sad, and in some cases humorous events that occurred in and out of the hospital since my diagnosis. Be patient, stay with me, and enjoy the ride.

Cheers!
~Adam

Sitting in clinic

2010-04-08T14:10:00.001-04:00

First and foremost, I want to say “Happy Birthday” to my brother, Beau. He is not only my best friend in this crazy thing called life, but his blood runs through my veins. Thank you for always being there for me and thank you for giving your lifeblood to save mine. I love you, bro.

So, here I am sitting at Dana Farber receiving some IVIG (explained in a prior post). My vitals and blood work on Monday looked good. Both of my doctors think things are going really well. And I must agree.

We are still tinkering with medications. Trying to make sure there is no increase in Graph vs. Host disease, increase to the pain to my back, and increase to the fluid retention. It has been one month and so far so good.

Next month, besides coming to clinic for my regular blood work and check-up, we are also going to run another CT/PET scan. It has been six months since my last scan, which showed I was in complete remission. If this scan reveals the same results, I fully intend to return to work this summer, perhaps as early as June.

I am starting to feel “normal” again. I’ve traveled to St. Louis to visit my brother. I’ve driven down to Hartford to visit friends and participate in an annual fantasy baseball auction, that I was unable to attend last year. My mind is running a mile a minute and I am impatiently waiting for my body to catch up to it.

Given everything that I’ve been though in the past 2 years, I am in good spirits and find myself being ready to step up and start living again. I have no problem traveling alone but if you want to come along for the ride, I say “the more the merrier”.

Cheers!
~Adam

Not done yet!

2010-03-08T19:17:00.000-05:00

Long time no talk. This is what I say to everyone when I am reaching out to say “Hi.” Well, it has been over a month with no updates so here goes.

Picture it. Peabody. 10am, March 4th, no plans, pajamas, not showered, sitting in front of Facebook playing Bejeweled. Ring, ring. Ring, ring. “Hello.”

“Hi Adam, this is Katie from Dr. Armand’s office at the Dana Farber. Can you come into today at 1:30pm?”
“Yeah, I guess. There is no way to do it on Monday.”
“Umm…I know it is short notice but this is the only day in the next two weeks both doctors can see you,” she said.
“Ok, no problem. I’ll be there”

Good news is my IV port flushed well and had a blood return. The passing out ceremony was unnecessary. More good news. My blood counts were solid. We are two for two folks, going for the trifecta. Bad news is I’ve added an extra 10lbs in one month, possible due to edema, I’m extremely fatigued and having back and chest pain. What do we do?

Before I go into greater detail, here is a brief history lesson. Back in May of 2009, my breathing became so labored due to Graph versus Host disease (GVH), that I was put on oxygen, steroids, and hospitalized for four days. And now after almost 10 months of steroid use, I was within .5mg per day of Dexamethasone from being completely taken off it for good. Now allow me to continue by update.

There are several things that could be causing my discomfort.

1. GVH. We (the doctors and I) thought it was long gone. Maybe not.
2. Adrenal Gland failure. When a body is administered steroids for as long as mine, the adrenal glands become dependent on the drugs for hormones instead of continuing to perform and produce their own.
3. Thyroid disorder. Patients who have had stem cell transplants, can be prone to thyroid disorders. According to my doctors, this will be the easiest problem to diagnosis and treat if found to be my issue.
4. We might have no clue.

Dana Farber already performed a CAT scan to rule out blood clots and potential swelling in my lungs. (My O2 levels had dropped from 94, which is low anyway, to 82 after a brief walk and six flights of stairs.) The next step is more blood and urine work for adrenal gland and thyroid issues. I will be scheduled for a full pulmonary screening if all other tests come back negative.

In the meantime, I’ve been instructed to increase my steroid intake from .5mg to 2mg daily (to combat possible GVH). I am doubling Furosemide (a diuretic used for congestive heart failure and edema) and cutting back to a low sodium (under 2400mg a day) diet.

Apparently these kinds of setbacks aren’t unusual under my circumstances. I know of two people both over three years removed from their stem cell transplants, who still haven’t returned to work, continue to be hospitalized by the common cold, and are always fatigued like myself. And although I could allow this to tear me down, I will fight on.

I have too much to live for, even though focusing on that is sometimes hard. I have good friends, loving parents, my family in St. Louis, and my amazing son. I am only 31 and plan on being here as long as there is breath in these lungs.

I want to take this opportunity to wish both my parents and nephew a “Happy Birthday!” March is a busy birthday month, 11th, 16th, and 23rd. Also if I don’t update before St. Patrick’s day, go out and have a pint on me but always remember to please be safe.

Until next time, Cheers!

Feeling Content

2010-02-11T21:08:00.001-05:00

What can I say? I haven’t written in a while. Not entirely sure if it is a major case of writer’s block, lack of a good topic, or perhaps things have been going well lately and I have difficulty writing when I’m content instead of upset.

I have two impending doctor appointments coming up, which I am not overly concerned about. Gabe has had a few minor incidents at daycare, however I feel confident with some good parenting and patience he’ll be fine. Remember he IS only 3. The separation agreement between my wife and I is being finalized and the house will either be sold or foreclosed on shortly. Things are looking up.

This past week, I actually got a plane and visited my brother and his family in St. Louis. Twenty months ago, this was not even a consideration. Chemo, radiation, stem cell transplant…an immune system which would be compromised if the bathroom wasn’t cleaned daily, let alone being crammed inside a germ-infested airplane for 3 ½ hours. Thankfully, my health is improving and more trips like this should be in my future.

It was an awesome trip. Besides getting away from the cave (my bedroom), I got to spend quality time with my brother, his wife and my nephew, Adam. We went to a Mongolian BBQ grille, a SuperBowl party, a bar, watched some funny movies and I even went to church. I got my drink on for the first time in over 2 years and even made a few new friends, which I am keeping in touch with through email and Facebook.

I am finally on my way to recovery, physically, mentally, and emotionally. Nothing in life is perfect but luckily for me, things are starting to work themselves out. The most important thing is to never give up. It is very easy to despair at times but you must keep your head up.

I will still talk about my experiences with lymphoma but hopefully with less doom and gloom. Stay with me as the journey continues.

~Cheers!

The New Year

2010-01-10T21:15:00.001-05:00

The new year and a new decade is here. Welcome 2010! You can’t be any worse than 2009.

Let’s review 2009. My wife asked for a divorce. I moved back home with my parents. My house hasn’t sold. I fractured my back. I made 33 documented visits to the hospital or clinic this year (probably more). I don’t see my son on a full-time basis, but in the end my cancer was shown to be in complete remission.

Looking ahead to 2010, here a few things I want to do and plan to do. I want to improve my culinary skills. With all my free time, I have had the opportunity to cook allot and would truly like to continue that. I plan to finally return to work in 3-4 months as long as my blood counts stay where they are. And I have full intentions of moving into my own apartment before year’s end.

I have been given something most people never get: a second chance. There is no right or wrong decisions or answers. Will I make more mistakes? Probably. Will I let those mistakes break me? No. Everything I do makes me stronger and builds my wonderful character. (brief pause for snickering)

I look forward to 2010. To see where my journey takes me and how much my son continues to grow up.

So here is to new beginnings.

Cheers!

Happy Holidays

2009-12-19T22:22:00.000-05:00

I haven’t made a post in 11 days and I’m laying in bed watching a classic Christmas tale, National Lampoon’s Christmas Vacation. Perhaps you prefer It’s a Wonderful Life, Home Alone, A Christmas Story, or one of the many variations of Charles Dickens’ A Christmas Carol. Whatever your holiday movie is, everyone has their favorite and families have their holiday traditions.

Around the holiday season, my father usually whips up a big batch of his amazing potato latkes for Hanukkah. Outside of lighting a menorah and my mother hanging decorations, this is the basic holiday festivities in my parents’ house.

My Christmas Eves for the better part of the last dozen years has been spent in the company of my best friends from high school. I’ve enjoyed Christmas morning breakfast at my father-in-law’s house and Christmas dinner at my mother-in-law’s house. I was unable to attend any of those events last year due to diagnosis and recovery from cancer. This year, I will not be in attendance either due to an impending divorce and lack of invitations.

However, not everything is doom and gloom. I was fortunate to spend the first 3 days of Hanukkah with Gabe this year. He helped light the electric menorah (safe for the young ones) and learned how to spin a dreidel. He came with me to the Masonic Holiday party my lodge held and even met Santa Claus. He asks to the use the potty on a consistent basis, gives me hugs, kisses, and tells me, he loves me. Not too bad.

So, here are my Christmas gifts to you. A positive attitude can help in the healing process. Only you can make yourself happy. Listen to others but remain true to yourself. Best wishes and good health to all.

Happy Holidays!
~Cheers

Side note:

I have received lots of feedback since starting this blog months ago. The majority have been positive and recently some negative. Most feel I am a fairly talented writer. Some people were surprised with the information concerning my disease and fight and happy it was shared. Some people think I am looking for pity and one even wants me to stop posting.

I learned a very important lesson in the hospital from a nurse who was in his second relapse with cancer. When you go through something this tough and trying, you earn the right to live for yourself first and tell everyone else to screw. There is nothing positive about cancer. I will not sugar-coat my experiences and feelings.

Best Wishes

2009-12-08T10:19:00.000-05:00

This week, I originally planned on writing about some happy memories from my past, but recent events have changed my mind.

I may not feel well and am still in the midst of recovery from treatments, however my treatments worked and I am extremely fortunate to be in full remission. I am lucky to have insurance that covered my treatment costs. I don’t wish or want disease, especially cancer, on anyone.

There are many who will be diagnosed this year and not have insurance for treatment or will receive treatment that will not work. These people are fathers, mothers, brothers, sisters, sons, daughters, family, friends, lovers, spouses, co-workers, and complete strangers. No one is safe from this disease and research must be done. I’m not asking for donations of money, but take the time to think about others less fortunate then you and maybe say a prayer for better times whether you are religious or not.

Here’s my topic for the day:

Follicular Lymphoma is the second most commonly diagnosed non-Hodgkin’s Lymphoma. Approximately 22% of all non-Hodgkin’s Lymphoma patients are afflicted by Follicular Lymphoma. It is a slow growing lymphoma that arises in B-cells (a type of white blood cells). It is considered a “low-grade” lymphoma due to its slow nature in behavior and how is looks under the microscope.

Some patients may never need treatment, although the median survival time is 10 years with a wide range from less then one year to 20 years. Because the disease moves so slow, diagnosis usually goes unnoticed until it is too late. By the time, most patients (80-85%) are diagnosed the disease is widespread throughout the lymph nodes, bone marrow and major organs.

Now, I am not afflicted with Follicular lymphoma but my father-in-law is. His daughter and I may have our differences and are no longer together but he has always been a gentleman towards me. He helped to move us in when we bought a new house. He came and mowed the lawn when I was too sick and unable to. He went from shop to shop and person to person for donations towards a benefit to help us when I was unable to work. He always had a Memorial Day BBQ and Christmas morning breakfast at his house. He always gave his time to help when and where it was needed. I wish nothing bad for this man; just good fortune and health. Unfortunately that isn’t the case.

He and I have many things in common. We are both divorced. We both live at home with our parents. We both love our kids. We both have fought and continue to fight battles with lymphoma. The difference - my fight is on the upswing and his is going down.

I have recently been made aware that he will enter the hospital on Thursday for back surgery. Due to the disease and treatment, he now has a fracture in his back. (I also fractured my back due to treatments.) Radiology shows a mass in his back near the fracture. Doctors don’t know if this mass is a bone fragment from the fracture or a possible tumor and they won’t know until he is laid open on an operating table.

I want to send my prayers and best wishes out to George, my father-in-law. He is a humble man, who doesn’t ask from anyone. I hope everyone will join me in sending good karma his way. I may not be religious but I believe good spirits and positive thoughts can be uplifting to the body, mind and soul.

~Thank you and Cheers!

The Camel is Broke

2009-12-06T10:20:00.001-05:00

An old adage states, “It take two to tango.” This is true. Another states, “That’s the straw that broke the camel’s back.” Both of these adages ring true when speaking of my marriage.

We fell in love quickly, probably too quickly. We rushed everything from getting to know each other, to living together, to buying a house together, to having a baby together, and to getting married.

We had conflict. We had financial woes. We had in-law issues. We had fading romance. We had both been laid off and needed to find new jobs. We had our first baby. Lots of life altering events and a very short time and then comes the straw…I got sick. WE HAVE A CAMEL DOWN. BROKEN BACK!

My understanding is 50% of marriages end in divorce. I am comfortable being a statistic. This was a relationship heading for the rocks and built to fail from the beginning. Hindsight shows me that. But it didn’t have the end the way it did…in the manner in which it did.

She took me to chemotherapy and clinic appointments. She made sure my benefits and social security were applied for and taken care of. She took 10 weeks unpaid from work to stay home and support me while I was a lump of useful human flesh. (Granted the 10 weeks were paid for with the funds from the benefit event that were supposed to last a year - different subject for a different time.) I couldn’t even stand in the shower by myself without almost passing out.

However, after our affairs were squared away and she returned to work, the love I once felt and still thought was there changed. She became rude. She became outwardly mean. I couldn’t take it anymore. I yelled. I questioned. And finally I got my answers.

She wasn’t happy. “Like two ships passing in the night,” she claimed. No romance. Friends at best. Kissing tales of weeks past with a co-worker. Did I really need this? No, but with a resounding YES.

Had I grown less romantic? Yes. Who would feel romantic while receiving chemo and feeling like shit day in and day out? Did we have problems? Yes. Show me a marriage without some conflict and I’ll sell you a bridge. I asked for couples counseling. It was refused. I asked to give me more time to recover and things would change. She was too far past that.

The result = divorce.

I have avoided this subject for too long now, but when someone says, “I bend over backwards all the time for you, always at the last minute.” I get a little pissed off seeing I can’t control cancer and I can’t control a suppressed immune system during flu season. There ARE things I could have done differently but in every relationship there has to be a push and pull and there will always be work to be done. Remember the vows, in sickness and in health, for richer or poorer, ‘til death do us part. It’s just rhetoric.

I don’t want to be painted the bad guy because I am sick? I don’t necessarily want her to be painted the villain because she left at the worst possible time. Everyone makes mistakes and unfortunately timing sometimes IS everything. I won’t apologize for being sick. She’ll never apologize for doing or not doing what she did.

There is no right or wrong. Everyone has their own opinions. I’m just tired of apologizing for what’s out of my control.

Cheers!

Footnote: Italicised text credited to content written in email by Kristie Callahan written 12/6/09

you be the judge - retraction

2009-12-06T07:37:00.004-05:00

Due to deep personal feelings and rash decisions, I have decided to pull my last post. I had a morning argument with Gabe's mom and should have calmed down before blasting her on the internet. I will repost this subject again at a later date with more information and slightly less venom.

Cheers!

To Port or not to Port

2009-12-04T14:37:00.003-05:00

An Infusion Port (also called a Port-a-Cath, Mediport, etc.) is a type of IV catheter, which is surgically implanted under your skin. It provides an entrance into your veins and arteries. Your infusion port allows medications or solutions to be given intravenously whenever needed.

Let’s talk past and present. On May 14th of 2008, I entered Brigham and Women’s hospital to have a dual-port placed for infusion use during chemotherapy.

This is a very minor and quick procedure. IV line placed in arm. Sedatives administered. X-ray. Ultrasound. Please hold your breath. Twenty minutes later. Please hold your breath….”You just asked me to do that?!” You are all done we just need a picture to make sure it is in right. “Oh, ok.” It’s that simple. Two days later I had my first chemotherapy and the rest is history.

The purpose for placing a port in my body instead of using a regular peripheral line in my arm is simple too. The chemotherapy regimen my body was about to endure would have stripped the veins in my arms. The ports would assure the poison would travel into a main artery and leave my veins useful for a later date.

I’ve had very few issues with these ports. Flushing with saline and heparin has never been a problem. Blood draws recently have taken a few minutes to start but then flow fine. And I have never experienced pain, until yesterday.

Please tune up the orchestra for the passing out ceremony. Port accessed…begin saline flushing…shooting pain up my neck…getting dizzy…going cold…sweat dripping…and…..WHAT HAPPENED?! That’s right. I passed out. I told the nurse I was going to and who am I break a promise. Here comes the wheelchair. Here comes a nice hospital bed. Here’s the question…what’s wrong with the frickin’ port?!

They try to access it again. Same pain, shoots straight up the right side of my neck. I don’t taste the saline and there is no blood return. At least the second time I didn’t pass out. So instead of a simple clinic visit, I get poked twice in the chest for no good reason except to cause a pain in my neck (no pun intended), poked once in each arm for blood cultures (necessary to have cultures from two different areas when checking for infections), had 2 chest X-rays (one to check the port and one to check for a respiratory infection) and a nasal washing (check for influenza and pneumonia, Dana Farber’s version of water boarding).

Being cancer free doesn’t mean stress free, pain free, or free from any normal sicknesses, viral infections, or flues that afflict everyone else. It just means I’m cancer free and still share everyone else’s problems. Please don’t welcome me to the club, I am charter member.

Here’s my update since Thanksgiving. Been fighting a viral infection resulting in two missed days with Gabe, one missed date, one clinic visit, one passing out, four placed IV lines, two chest X-rays, one nasal washing, one pain in my neck, and a partridge in a pear tree.

I know this is the time of year for giving, but really…Give me a Break!

Cheers

Thanksgiving

2009-11-27T16:43:00.000-05:00

This time last year, I wasn't thankful for anything. I know it sounds horrible but being two weeks removed from one month in the hospital doesn't make you very grateful or thankful.

Here is a list (in no particular order) of what I am thankful for this year.

Gabriel, my son. Daddy loves you!
Beau, my brother, without him I wouldn't be writing this list
My family, most notably my parents
My friends - it is really easy to give up on someone when they seem down in and out
My wonderful team of oncologists
All of my new brothers from the Masons
Chinese food
Pizza
Beer (in moderation of course)
Good and Bad comic book movies
The Food Network
and most importantly complete remission from lymphoma

Like I mentioned before, this list is in no particular order but just some of things I am thankful for now and will not take for granted anytime soon. Be thankful for everyday you breath and experience life. Be thankful for the people in your life who love you whether you're being a pain in the ass or a complete angel. Not much more to say.

I hope everyone had a safe and Happy Thanksgiving and you survived black Friday if you were brave enough to go.

Cheers!

Blood on the Down

2009-11-23T11:29:00.000-05:00

Neutrophil granulocytes, commonly referred to as Neutrophils, are the most abundant type of white blood cells in humans and form an essential part of the immune system. Neutrophils are typically found in your blood stream. However, in the beginning stages of inflammation, particularly with bacterial infections and some cancers, neutrophils are one of the first responders of inflammatory cells to move toward the inflamed site.

On two separate occasions since my diagnosis with cancer, my Neutrophil count has dropped to zero. On both occasions I’ve been hospitalized. As far as I know you need to have a Neutrophil count of at least five, or at least I needed MY count to be five to be released from the hospital.

My first experience with a low Neutrophil count was following my third treatment of chemotherapy around July 4th of 2008. I had a high temperature, mouth sores, dehydration, and exhaustion. After contacting my oncologist, I went to Dana Farber to be checked out. Upon arrival to the hospital, my temperature was 102.5. As soon as the nurse started to draw blood cultures, I passed out and had the first and only seizure of my life.

Waking up from a seizure and seeing 20 strange faces in front of you, your wife crying and people yelling “Code” and trying to stick you with IV needles is quite the experience. If I hadn’t just regained consciousness, I probably would have passed out again. I didn’t know what happened and no one would answer my two questions. “What happened?” and “What does that mean?”

Regardless, I was placed on a stretcher, put in an ambulance and taken to Brigham and Women’s Hospital. After five days of tests, IV fluids and antibiotics, my Neutrophils rose to a normal level, my temperature dropped but we never found out what kind of infection I had.

Now this past Memorial day, I had no temperature, felt fine and just happened to be at clinic for my regular monthly check-up, but I had no Neutrophils in my blood work. I went to Boston for a check up and ended up staying in the hospital for 5 days. Tons of scans, blood work, and even another bone marrow biopsy found no infections or problems in my body. My Neutrophils were at zero for 3 days. Day four it rose to one and morning five it was at twenty-two and I was released.

I think my point is whether I feel sick or don’t, whenever I have blood work done there is always a chance I will hospitalized. The doctors and nurses will poke and prod. They won’t find any problems and I’ll magically be better 3-4 days. Talk about frustrating!

I want to close this post my saying I am very proud of my son. We just celebrated his 3rd birthday. I don’t remember his birthday last year as I was only 16 days removed from the stem cell transplant. Gabe is adjusting so well to life with his parents separated. He can spell his name, count to 24, sing “you are my sunshine”, ask to use the potty, and wants to help or do everything my himself. He knows his full name, his mommy’s and daddy’s names. He says “I love you” all the time. He is SO special and SO smart. He will be my legacy one day when I’m gone and I couldn’t be prouder.

Daddy loves you, Gabe. Happy Birthday!

~Cheers

Coming Home Again

2009-11-14T17:36:00.000-05:00

Who says you can never go home? I’ve done it several times in the past. Thanks to my parents I have always had that option. I came home after college. I came home after a failed apartment experiment. And most recently I came home after a failed marriage.

I would like to take this opportunity to thank my parents for their continued love and support throughout all my endeavors in life. They’ve dealt with my best on the stage, on the field, in high school, in college, at the workplace and my worst with relationships, my struggles with teenage angst, depression, suicide, and cancer.

Several of my supporters have asked me to write about a topic I wasn’t truly ready to tackle. For the love of my son Gabriel, I won’t go into great detail and will keep this somewhat short.

Let me say I have no regrets In life, but Lord knows, I have made my fair share mistakes. Just a few being attempting suicide in high school, attacking a friend in college, buying a house far out of my financial means and my marriage. Hindsight is always 20/20 and you can‘t change the past. All we can do is learn from it.

My wife and I were engaged three months before finding out we were pregnant with our first and only child, Gabriel. His due date and our wedding date were set only weeks apart. So, we cancelled our wedding plans, got back what deposits we could, flew out to Las Vegas on May 21, 2006 and got hitched. On November 21st of that same year, Gabriel was born.

Less than three years after our Las Vegas marriage, my wife asked for a divorce. There are many reasons she asked for a divorce and I know my sickness was one of them. Life hasn’t been easy for me but I know it must not have been easy for her either, dealing with someone sick on a daily basis for 10 months. Going in and out of Boston for treatments. Taking care of a toddler by herself while I lay in a hospital bed. Living with someone who didn’t share compassion and had all but lost his passion for life.

Perhaps, I am naïve but I always thought marriage was taking the good with the bad. Sickness and health. Richer or poorer. Until death due us part. I now know this is just rhetoric and doesn’t mean much. I actually had to keep myself from laughing at a recent wedding when I heard these vows repeated by the bride and groom. How sad is that?

And despite everything that’s happened, I still believe in love and would like to find my happy ending. My happily ever after. But I realize, it won’t come from someone else. I need to find my own happiness as does everyone. Whether it is cooking, sewing, music, art, religion, exercise or doing nothing at all. If you can’t make yourself smile, don’t expect someone else too.

I love my son so much I am not going to divulge anymore of my feelings here. I could go on for much, much longer, but I’ll keep my harsher feelings on this matter between me, my journal, and my counselor.

Thank you again for taking the time to read. I still have so much to say but am so unorganized. Stay with me. There is MUCH more to come.

~Cheers

The Chimerism

2009-11-10T11:57:00.000-05:00

“Chimerism (Marrow Transplant Engraftment) Monitoring assesses the relative ratio of donor and recipient cell populations in the post-transplant peripheral blood and/or bone marrow of the patient.”

Since the stem cell transplant, my oncologists perform chimerism studies (blood work) every couple of months to determine the percentage of my brother’s cells in my blood stream. My most recent study just came back and I am 100% my brother’s cells. Obviously this is outstanding news.

However it isn’t always peaches and cream. There are many things that can go wrong with a donor stem cell transplant. The same way things can go wrong with an organ transplant. Even with a perfect match, complications can occur. The worst, of course, resulting in death.

Wikipedia states Graft-versus-host disease (GVHD) is a common complication of allogeneic bone marrow transplantation in which functional immune cells in the transplanted marrow recognize the recipient as "foreign" and mount an immunologic attack. It can also take place in a blood transfusion under certain circumstances.

In simpler terms, your body rejects the new stuff and tries to fight it off by any means necessary. I have some first hand experience with GVHD, even with a 100% chimerism of Beau’s cells.

Seven months ago, my breathing became so labored I was using an oxygen machine. I landed in the hospital for 4 days over Memorial Day weekend and have been taking steroids ever since. Luckily, the steroids corrected my breathing but left my body a battered, bloated, and fluid-filled mess.

Funny thing about steroids…the first 4-6 weeks I felt empowered and unstoppable. This must be the reason why athletes use them but only in cycles. Since those initial weeks, the muscles in my legs and lower back deteriorated to the point where I had to push myself up from chairs because my legs were too weak. I actually fractured my lower back trying to pick up my son and needed 2 weeks of bed rest and 3 months of physical therapy.

And don’t get me started on the hunger and eating related problems. There wasn’t enough food in the house to keep my appetite at bay. I am a good eater anyway and this just made things worse. But once the energy went away, the pounds packed on as did the fluid. Unfortunately, now the fluid is in my skin and not my veins, so I have to wait until the steroids are completely tapered down before the fluid will hopefully flush out of my body. Ugh!!!

The moral of this story is. You need to take the good with the bad. I wouldn’t have gotten to this point (cancer free) without having been through many struggles. The initial battle is over but the war still rages on.

Keep me in your prayers and I’ll keep up my spirit and the fight.

~Cheers

Looking for a New Direction

2009-11-06T12:06:00.000-05:00

Good day to all my friends, family, and brethren. Today, we will be covering an interesting topic. That topic being…drum roll please - What do I do now?

Ok, ok, I know this sounds ridiculous but just hear me out. As you know, a week ago I was diagnosed cancer free. For the past 18 months, besides thinking and caring for my son, my only concern, focus, and identity has been on me and my battle with lymphoma.

Granted I am still on several medications (immune suppressants and steroids), which keep me from resuming a regular work schedule and social life. Also, I am in the midst of getting divorced, attempting to sell a house, and eventually moving out from under my parents’ roof and living on my own again. Outside of these items, I am getting closer to the light at the end of the tunnel.

My problem…when I reach that light what do I do? I have been so self contained with cancer, I am not sure where to begin or how. I want to travel. I want to find a new career. I want to spend more quality time with my son. I want to be able to find someone to share life experiences with (although I am unprepared for that now). I want to find more happiness in my daily life.

I am reaching out to anyone reading this blog. I am open to comments, criticisms, ideas, reflections, all of the above. Give me your insight as I am looking for a path.

Thank you and as always cheers!

Rendered Speechless

2009-10-29T21:19:00.000-04:00

I am going to keep this post short. Today, October 29, 2009, I went to Dana Farber Cancer Institute for a CT/PET Scan. This scan was to show how far into remission the cancer in my body as come since the start of my treatments on May 16, 2008.

Dr. Alfred Lee, who has been with me since the beginning, came into clinic today and told me I was in complete remission. With my own eyes, I viewed the pictures from the scan that showed no contrast in my right leg, where 18 months ago it was completely infected with Lymphoma. I was rendered speechless. Anyone who knows me, realizes this is almost an impossible task to accomplish.

So, again I will keep this short. Today is a day to savor and reflect. I couldn’t be happier and am still not sure how to express it. Thank you again to everyone who has supported me through this journey. It isn’t over yet, but we are getting closer to the end.

~Cheers

Wait and See

2009-10-25T20:14:00.000-04:00

Let me start this post by thanking someone for asking me to create this blog. Over six months ago, my friend, Minesh, suggested I start a blog about my story. He thought others may find it motivational and in some way I feel it has been therapeutic for me. Minesh and I haven’t always seen eye to eye, but he has a good heart and had always been there for me if I needed him. There isn’t much more you can ask from a friend. Thank you.

This up-coming Thursday Oct. 29th, I have a CT/PET Scan to find out how far into remission the cancer is since the stem cell transplant one year ago. To say the least, I am quite anxious. I will be at Dana Farber at 8am for blood work, 9:45am for the scan, and then 11 and 11:30am with my oncologists for my normal monthly check-up with blood and scan results.

My last scheduled scan was three months following the transplant and showed diminished size of the lymphoma in my leg. This time around I am obviously hoping for improvement or at the very least no change at all. I won’t begin to discuss my feelings if the scan shows something other than those two outcomes. You can use your imagination.

I am going to keep my fingers crossed and try to stay as positive as possible. Of course, if that fails; I always have my Celexa and Ativan to fall back on. I may post again before Thursday, but it might be difficult to keep any thoughts straight.

Keep me in your prayers and I will update again soon.

~Cheers

My New Birthday

2009-10-23T08:37:00.000-04:00

Today is my unofficial new birthday. October 23, 2008, I received an infusion of stem cells at Brigham and Women’s hospital. The nurses say this is a rebirth because it changes my blood type and rebuilds my blood counts and immune system from ground zero. After the conditioning process, (already described in a prior post), if the donor stem cells are accepted by my body, they should destroy any remaining cancer cells and provide me with 30-40 years of life without relapse. So far so good with one year down.

Needless to say, this is an emotional day for me. Now a little background again. I still don’t quite understand the process used to find a stem cell match. It isn’t as simple as matching a blood type. There are specific items the doctors need to see within the blood to find the perfect match or at least one close enough. You would think siblings and relatives might be the best donors but only 25% of all siblings end up being a patient’s donor. My memory is a bit foggy but it was my understanding I only had a half-dozen potential matches in the bank of registered blood donors.

Now, I’m a gambler. I’ve never won big but I do love Vegas, Foxwoods, Mohegan, the lottery, scratch tickets…so I decided to roll the dice. And wouldn’t you know…I hit pay dirt! My only sibling, Beau, was tested and found to be a perfect match.

He traveled back and forth from St. Louis to Boston for testing, physicals, counseling, the actual donation, and he also went through a series of shots to increase and mobilize the stem cell levels in his body. The donation process is interesting. The machine resembles a dialysis machine. Beau had one IV in each arm. One IV taking his blood out, which was then cycled through the machine to separate the stem cells for me, then returning the platelets and red blood cells to him through the other IV. This is an eight hour process, where his entire blood supply is cycled 3-4 times. No fun to say the least.

As if this wasn’t enough, the staff found Beau to be a bad mobilizer. Basically even with the shots, his body didn’t produce a high enough level of stem cells needed for my transplant. So not only did he donate cells on the 23rd, but also on the 24th and was required to have a full bone marrow harvest on October 28th. This is a full surgical procedure, where three holes are made in the hip bone (while sedated) and bone marrow is extracted for later infusion.

There are no words to truly describe the feelings towards Beau. He is my big brother, my confidant, and my best friend. And after this procedure, he became my savoir. How does one find words for someone who attempts to save your life? Impossible. His blood now runs through my veins (literally) and I can only hope it will make me a better person and I’m not speaking solely of my health.

Today, I celebrate my new birthday and in doing so, I want to send all my love and thanks to Beau Richmond. I wouldn’t be here today if you were not part of my life.

~Cheers

Diagnosis

2009-10-20T09:51:00.001-04:00

Today I’m going to backtrack a bit and talk about how everything came to a head.

Back in very early 2008, I noticed two small red bumps (size of a pencil eraser) on my right leg, one by my ankle and one on the back of my calf. At the time this didn’t seem strange or odd but in the coming months that would change drastically. With each passing week, these bumps got larger, then swollen, and painful. By late March, I was having trouble walking and both bumps were now the size of racquetballs. Time to see a doctor.

My primary care physician put me a course of antibiotics in hopes this was a staph infection of some nature but after seven days there were no changes. I was then referred to a general surgeon, who first performed two series of ultrasounds to rule out possible blood clots. As these tests came back negative, the next step was the dreaded biopsy.

Two small biopsies were taken (one from each bump) and within 10 days time I received a phone call. “Mr. Richmond, I am terribly sorry to give this news, but the biopsies show you have a subcutaneous B-cell Lymphoma.”

Hold the frickin’ phone! I’m at work, not a care in the world, and to the most part completely ignorant to the wide world of cancer. The doctor might as well been speaking Chinese because I had no clue what just happened until he said, “I can refer you to the North Shore Cancer Center if you’d like?” OK, there is was in plain English…”Cancer”. My whole world as I knew it collapsed.

First I called my wife (soon to be ex now). Then I called my parents and my brother. I told a few close co-workers, instructed my boss I’d be leaving for the day and then somehow managed to drive 50 miles home with tears streaming, anger brooding, and hope dwindling. My main focus was my son Gabe and what time did I have left.

I decided if I was going to have cancer and fight the good fight, I might as well be seen by the best oncologists in New England. I immediately called the Dana Farber Cancer Institute, had a second larger biopsy taken from my calf (to get the classification of Lymphoma, there are over 85 kinds of non-Hodgkin’s Lymphoma), and made an appointment with Dr. Arnold Freedman. He is an amazing oncologist, who focuses on Lymphomas. He and fellow Dr. Alfred Lee would oversee the next six months of my chemotherapy treatment.

I’ll get more into that shortly. I need a break. Thanks for reading.

~Cheers

Conditioning

2009-10-18T13:33:00.001-04:00

This time one year ago, I was getting ready for an evening cocktail of Cytoxan. Cytoxan also known as cytophosphane, is a nitrogen mustard alkylating agent, from the oxazophorines group. It is a chemotherapy used to fight lymphomas and some leukemia by infusion. In my case, it was the beginning of a 6-day “conditioning” process to destroy my immune system prior to receiving an infusion of stem cells.

This is how it works. Two nights of Cytoxan, followed by 4 days with 7 doses of full body radiation. After experiencing 5 months of chemotherapy prior to the stem cell transplant, I was aware of most of the chemotherapy side affects. However after only a few minor sessions of localized radiation on my right leg, I had no idea the toll full body radiation would take on me.

Diarrhea, vomiting, dry skin, itchiness, mouth sores, throat sores, fevers, body aches, muscle aches, lack of energy, lack of appetite, lack of taste, dry mouth, depression….you name it, I pretty much got it. In one word, “Hell”. If there weren’t pictures of my son hanging in the room to keep me motivated, death would have been a welcomed option.

Now, I’m not sure how real I want to make this, but there wasn’t a day that passed in the hospital where I didn’t cry. I spent 30 minutes sobbing, every morning and every afternoon that I was brought down to the radiation lab for treatment. Laying on a slab, with a plastic box over my head crying. It feels like a tanning bed but it isn’t like preparing for vacation. I was a mess.

Let me apologize if my comments and messages seem a little unorganized and scattered. I have so much to get out and am not sure the best way. Just stick with me and we’ll get through this together.

I’m spent for now. In the next few blogs, I’ll get into my 5 months of chemo, actual diagnosis and presentation, and the donor of my stem cells.

The First Post

2009-10-17T09:08:00.000-04:00

So, where does a person begin a story of epic proportion. Maybe I’ll do this Tarantino style. We’ll start in the middle, work our way backwards, and then have a big finish. I could just be straight forward or I could myself and start and stop and jump for event to event with no real rhyme or reason. Either way, here we go.

I’m a 31-year old male, who is attempting to survive a battle with cancer. What kind you ask? Mantle Cell Lymphoma (MCL). Yes, Mantle Cell Lymphoma. You’ve never heard of MCL?! Don’t feel bad. I had never heard of it either in April ‘08, when the oncologists at Dana Farber Cancer Institute in Boston gave me their diagnosis.

Let’s tell you a little bit about Mantle Cell. It is a B-cell non-Hodgkins Lymphoma and one of the rarest. Only 5-7% of all non-Hodgkins cancer patients per year will fall into the category of MCL. It is most commonly diagnosed in males over the age of 60. There is no known cure for MCL. Even with active treatments of chemotherapy, radiation and bone marrow transplants, most patients will fall victim to MCL between 3-6 years of diagnosis.

Today is October 17, 2009 and one year ago I was admitted to Brigham and Women’s Hospital to begin the process of a donor stem cell transplant (similar to a bone marrow transplant) to hopefully save my life and buy as much time as possible while being afflicted with this horrible blood disease.

This is only the first post of a what might end up being a long lasting blog. I've had a few friends ask me to tell my story as they see it may bring hope and motivation to others, fighting cancer, illness, or other problems in their lives.

I want to thank those friends and family and my very loyal medical staff who have stuck with me through from diagnosis 18 months ago though my current attempt at recovery and remission. There is much more story to tell, so please stick with me as this ride is going to get bumpier before it smooths out.

Cheers!