Passing Away

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

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

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

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

“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

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

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.

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!

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

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

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

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

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

“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

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!

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

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

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!