Hip Pre-Op

Today was pre-surgical day. Blood work. Nurse check-up with prescription review. Met with a care coordinator about post-operative in-home and out-patient physical therapy. X-rays. Urine sample. Finally, a meeting with the surgeon, who told me I have a “jelly belly.” If he wasn’t such a damn good surgeon, I’d punt him in the nuts.

Do you remember trying to push a square peg into a round hole as a kid? It doesn’t work.

Well…after viewing X-rays of my right hip today, I found it doesn’t work with bones and joints either. The femoral head of my right leg is the square peg. The hip socket is the round hole. Doc said it probably hinges a lot. This explains the increased soreness and pain I’ve been experiencing. Everything else is right as rain and we are set for surgery.

We also discussed potential corrective right knee surgery following the hip replacement. I am slowly getting closer to the end but still not there yet.

14 days until my upgrade.

Cheers!

Let's review

I am only 19 days away from my second total joint replacement in less than 8 months. As this long awaited event nears I can’t help but think back on the last 6 years of my life. I am obviously still alive but it reads like a bad luck novel.

Diagnosed with rare Mantle Cell Lymphoma.

Four months of r-Chop chemotherapy treatment.

One seizure followed by 3 nights of in-patient observation.

Two weeks of localized radiation.

One allogeneic stem cell transplant consisting of chemotherapy, full-body radiation, stem cell infusion, mucositis, neutropenia, vomiting, diarrhea, bed soiling, wetting, and 5 weeks in-patient.

Pulmonary graft versus host disease.

One rectal fistula requiring corrective conscious surgery.

Prolonged steroid cycles.

Compression fracture of my lower back.

Cataracts in both eyes requiring surgery.

Avascular necrosis in both legs and hips, requiring left knee and right hip replacement.

One divorce.

Oh and I may be losing my disability benefits.

I try desperately to think of the glass half-full but it always looks half-empty to me. Six years ago, a nurse told me if I survive treatment, I’ll have earned the right to do and say whatever I want to anyone. I think it is a brilliant theory but also a cop out to be a complete jackass. I still believe you treat people as you’d like to be treated. Don’t go out of your way to be rude. Don’t boss people around. Don’t intentionally embarrass someone. Timing does matter. Try not to hold a grudge (my own personal plight). Extend a hand to pick someone up instead of kicking them when they’re down.

Unless I win my appeal with Social Security, there probably won’t be another post until I’m out of surgery.

Thank you to my supporters. I know who you are.

Cheers!

Hope

Beyond the dreary black clouds, there is sun on the horizon. How you say? I anxiously went to my primary care physician’s office (PCP) today for the purpose of continuing my appeal with social security for disability benefits. Forms were sent to the PCP by social security to be completed on my behalf for the appeal.

Family, friends, a disability lawyer, and other medical professionals have assured me I should win my appeal without moving to a hearing. Today, I believe that. My PCP hit all the nails on the head about how the physical pain not only hinders my mobility but also my energy and concentration. All of this is true.

I even started a countdown to hip replacement. Today we stand at 72 days. I keep my fingers crossed for a cancellation, so I may be cut open sooner. I am nowhere near masochistic but the thought of replacing this current pain with a new one is exhilarating.

My drawer of spoons is official empty.

I want to wish my brother a Happy and Healthy Birthday and everyone a Happy Rex Manning Day.

Cheers!

An Evening Rant

The past week has been painful and uncomfortable. Not since my knee replacement have I needed to take so much pain medication. Aleve. Oxycodone. Even Morphine. Nothing gives me enough relief for a decent night’s sleep or close to a pain-free day.

Right hip replacement surgery is scheduled for late June. Once that is done, what next? Right knee replacement? Left hip replacement?

It is hard “making the best of things”, when there is constant pain. When does my physical pain end? I don’t want to rely on Social Security to survive. I don’t want to live with my parents because I can’t take care of myself. I don’t want to feel like my days are passing with no meaning.

I want attention. I think everyone does. Shit. I even took on a position in lodge to help and in some demented way feel needed. Unfortunately, my position is underappreciated and its importance overlooked.

What really upsets me is the appeal process with Social Security for disability benefits. I am completing all the same paperwork as in January and they denied me then. Why should this time be different? I’m royally screwed if I lose this appeal. I can’t physically or mentally hold down a full time job right now. It would be impossible.

Too many people recently mention how life is unfair. When my lymphoma went into remission, I thought my unfair days were behind me. I was wrong. Seems the cure has left me worse off than the disease. All I have now are more bills, more pain, and fewer friends.

Venting is healthy. Thank you to those who stand by my side.

Cheers.

Here’s a smidge of good news for the weary. After 4 phone calls and 2 weeks of waiting, my total right hip replacement surgery is scheduled for June 20th. The date is later than I would have liked but they promised me a spot on their cancelation list if a sooner date should arise.

Otherwise, life is peachy or at least I’ll have you believe it as such.

Cheers.

Time to be a bother

In one of last week’s posts, I mentioned speaking with the orthopedic surgeon’s office to schedule a total right hip replacement. The first call was made Friday, Feb 28th. The young lady assured me I’d be called back with a schedule that afternoon or the following Monday. I received no call Friday afternoon or Monday.

Fast forward to last Friday March 7th, I call and leave another message about scheduling the hip surgery. Their voice mail states all calls will be returned within 24 hours. Which brings us to today, Tuesday March 11, 2014, and I am still without any surgical information.

I now have a new plan. This plan involves me calling their office every morning at 9:30am for the foreseeable future until I get what I want. Since Saturday I’ve been switch-hitting between a cane and crutches. Ambulating has become tedious and I need to know there is a finish line up the road.

Here’s a bit of good news. Yesterday, I found enough energy to shower. That had been 3 days in the making due to pain and fatigue. And last night I doubled my usual sleep intake from 2 to 4 hours. It was either the Morphine or exhaustion. Either way, I’ll take it.

My weekend was decent. I helped Gabe practice for his second drum lesson. We spent most of our time watching live drum sessions on YouTube. He seems really engaged with the thought of playing the drums. It is fun watching him get excited over what was such a large portion of my life.

I’d like to wish my mom a Happy Birthday. I’ve been homebound since Saturday and am without card, but hope she reads this. I know I can be a pain in the ass mom, but I love you. I don’t take for granted everything you do for me or anyone else. You always find the strength even when it is near impossible to grasp. Happy Birthday!

My plans for the week are as follows: Harass the orthopedic office until surgery is scheduled. Drive to Dana Farber for prescription refills. Go to lodge rehearsal Wednesday night. Visit Gabe’s school Thursday for a presentation on Black History Month. Take mom and dad out Friday night for their combined birthday dinners. Of course, run other random errands and hopefully I see Raine.

That is all for now.
Cheers.

I must admit the past 6-7 days have taken quite the toll on me. Emotionally, physically, and mentally I'm at breaking points. Some more than others. Physically, I know I'm broken. X-rays show the proof of broken and corroding bones in both my right hip and knee. Emotionally, I'm sad, angry, depressed, which is mentally driving me mad. I'm confused about relationships with my friends. I'm upset with my inability to leave well enough alone and I'm disappointed in always be judged for my attitude and condition. The stress affects me physically by increasing my pain levels, causing additional muscle aches, and unfortunate stomach issues resulting in daily bowel problems. I'm tired of not sleeping. I'm tired of the pills. I'm tired of never feeling like I belong.

Yesterday, my son asked me why I sounded so sad. All I said was, "hello". Today, he barely spoke and I actually hung up the phone on him. I begin to question my own veracity.

Always alone in a crowded room, lost in the voices of a clouded mind.

Good night.

Eyes wide open

Eyes open. Eyes close. Eyes open. Eyes close. Bladder calls. Eyes close. Roll over. Knee attacks. Hip attacks. Eyes open. Bladder calls. 3:32A.M. Stand, cringe, limp, urinate, wash, limp, cringe, and sit down.

Prior to midnight, I took Oxycodone and Ambien. One relieves pain and the other keeps me asleep at night. Both work to complete their intentions, neither able to do so.

This isn’t new. Same song, different night. Some nights are laden in bad dreams. Some nights my mind just runs wild and is impossible to turn off. Hip pain. Knee pain. Chest pain. Joints lock. Muscle aches. Nightmares of running, trying to catch up. Maybe it is the secretary duties at lodge I’m running after, or social security to overturn their ruling. Maybe I’m chasing the life, I had prior to cancer. Either way, I don’t sleep.

Tonight I ramble. Tonight I research. Tonight I tried to help a brother who is worse off than me.

I have a brother (fraternal), who is confined to a wheel chair, but used to teach the youth of America how to act on stage. He has been crippled with Multiple Sclerosis. He has no use of his legs, left arm, and partial movement in his neck.

I took it upon myself and turned rogue to help a brother. I sent message to the Ivory Tower and hopes to remit my brother’s payment for a life-time. I am certain this payment would benefit him and his family in other ways.

I know what it is like to be disabled and reach for life lines just out of your stretch. It was a selfish and noble act. I performed this act, hoping if one day my health takes another downward spiral my brothers will do the same for me.

I celebrated a 7 month anniversary with my special girl yesterday. She must be special because she makes me special. My son started drum lessons and didn’t wamt it to end. It makes me proud seeing him pick up where I left off. Most importantly, I wouldn’t be here now, if it weren’t for my real-life blood brother. He is the rock, who keeps me whole when I am so close to crumbling.

He assures me I’m not all doom and gloom and the past year has been quite difficult for me physically but it is all part of life. He tells me not to allow others to judge you, because they don’t walk in your footsteps.

My well is dry. So I say Good morning. 5:06am

Cheers!

Overdue

It has been over 5 months since I utilized the power of the pen (or in this case the keyboard). I apologize for the absence. Many days have passed and many events have transpired. I will attempt to bring you up to speed.

October 2013
We last left the limp crusader (me) he was preparing for total left knee replacement surgery and an industrial strength hip injection to subdue pain. Doc anticipated the need to cut away several inches of corroded bone and insert steel rods to hold the artificial knee in position. Alas, he was able to replace my old knee without the assistance of extra rods. The bones above and below the knee joint weren’t corroded to the point of uselessness. Coupled with the hip injection prior to surgery, the whole procedure was a success.

Throughout the next few months, a team of in-home and outpatient physical therapists put my body through a rigorous regimen of exercises. We did everything from simple stretches, walking down a hallway, and low grade stationary bike, to weights, squads, and unassisted stair climbing. Happy to report my total left knee replacement went better than expected.

Of course with every victory also comes defeat. The physical therapy took quite a toll on my whole body, but most severely the right knee and hip. As I’ve mentioned in prior post, the day would come when both would need replacing and the day has come.
I visited Dr. John Ready of Brigham & Women’s hospital on Thursday, January 30, 2014 for a post-operative appointment. We did X-rays on the left knee and right hip. The knee looks perfect. The right hip showed increased damage to the already fractured femoral head. Instead of scheduling surgery, I opted for another hip injection (noting the success of prior injections). Unfortunately, the injection on February 3rd offered no relief. This past Friday morning I contacted Dr. Ready’s office to schedule a total right hip replacement and possible orthoscopic right knee operation. Knowing their timetable, the surgery won’t be scheduled until late May or early June. That’s 3-4 months of limping, using a cane, and biting a bullet.

On a related medical note, I recently filed an appeal against Social Security. They stated I am medically improved and no longer need their benefits. I should go back to a 40 hour a week schedule. This will cut off my disability check and medical insurance. They are under the guise of a 35-year old male in remission for 5 years is healthy enough to reenter the workplace. They don’t take into account my diagnosis of Avascular Necrosis (AVN) due to a prolonged use of steroids to combat Graph versus Host Disease (GVHD) as a result of a stem cell transplant to save my life from Mantle Cell Lymphoma.

One disease spawned a second disease in turn spawned a third diagnosis in turn has rendered the 4 major joints in my lower extremities to need repair. This causes hourly pain, limited mobility, fatigue, insomnia, and mental stress on a daily basis. The upcoming surgeries are pending on the assumption I’ll win my appeal.

Let’s see if I leave you with a positive vibe.

This summer I met a girl. She is quite the woman. She likes me for me and all my limitations. That is a rare breed. There is something special there, so I’m not rushing anything.

My son continues to grow. Most days I have nothing to give him besides companionship. Pain limits my ability to play with a spry 7-year old boy, who has energy to burn. But he tells me it’s ok and he loves me, and that I’m the best dad in the world. He tells me these things not because I supply him with vacations and expensive toys, but with my time and affection.

Time…time is all we have in the world. My time is spent mostly on a couch, in my bed, or in doctors’ offices. Most days I have just enough spoons to shower and feed myself. I try to make the best of what time I do spend with friends, family, strangers, and my loved ones. I know there are times I’m a bear and impossible to deal with, but isn’t that just human nature. Isn’t everyone entitled to a bad day, week, or year?

The next time we chat, I should be scheduled for more surgery. With each artificial piece they use to rebuild my body, I take another step forward in rebuilding my life. The sky is often filled with clouds. You just need to find your silver lining.

Cheers!

Ortho Update

I paid the orthopedic a visit today to discuss discomfort in my right hip. They took a few X-rays. I sat around and waited for my name to be called. To my surprise, he was on time and it didn’t take long for the results. The right Femoral head is breaking down around the hip socket in the exact same manner the left femur is fracturing around my knee joint.

There are several treatment options. 1. Bite the bullet and deal with the pain. 2. Injections, such as cortisone. 3. Weight loss and low impact exercise IE; water aquatics, elliptical trainer, & stationary bike. 4. Hip replacement.

I am choosing options 1-3 for the time being. A hip replacement is inevitable, but we’ll start with a hip injection next week. The goal is get me through knee replacement and rehab without needing to focus too intensely on the hip.

As for the knee, there is nothing to do between now and Oct 4th. I questioned the possibility of a cortisone injection in attempt to control pain. This was shot down. To my surprise, they don’t perform joint injections within 3 months prior to surgery. I am supposed to stay as immobile as possible, avoid stairs and attempt to lose 20lbs in 3 weeks. The weight loss is little steep so I’ll shoot for 10lbs.

Breakdown: Good news – Surgery is still on for Oct 4th. Bad news – There is little to no pain relief in sight for the next 3 weeks. The Crystal Ball – The right hip will eventually need surgery. That’s the long and short.

Cheers!

The Painful Truth

For almost 2 years, I anxiously awaited a surgeon to approve knee replacement surgery. Here is the twist. Less than 4 weeks out from surgery and tomorrow I will be calling that very same orthopedic surgeon to discuss my hip and possibly to postpone the replacement.

I fractured my right hip back in November and it hasn’t been the same since. It has actually been a larger distraction than the left knee. The pain has become intolerable and needs addressing. Horrifying to think there is a more pressing matter than fixing a broken femur and faulty knee but it is true.

If nothing else, it gives me a reason to write more every day. Honestly…What’s the point of a blog if you don’t write?

Cheers…

The Spoon Theory is a savior

Five years. Five years, I’ve struggle to explain the invisible. If you saw me in a booth at your local diner drinking coffee and enjoying breakfast, you’d say I look normal. “He’s nothing more than an overweight, bald man stuffing his face.” You can’t see the blood disease that lies dormant in my veins. You can’t see the broken leg, cracked knee cap, or fractured hip. You can’t see the never-ending pain pulsing through my body.

You can’t possible understand how each moment of my day/week/month needs to be planned and scheduled. Most people just get up and go. They know not of restraints or limits of energy. They know not of the invisible diseases, aches, pains, etc., that limit so many people.

Today, I was introduced to The Spoon Theory written by Christine Miserandino. I thank Raine Vollor for the introduction. I repeat. Five years, I spent trying to explain something, which Ms. Miserandino writes about so easily. She lives with Lupus and found herself trying to explain her chronic pain and daily routine to her best friend. Hence, she created the Spoon Theory. The theory based on Lupus can easily be used for cancer, Rheumatoid Arthritis, Chronic Fatigue Syndrome and many more.

Attached is a link to her article. I found solace in her words. When you hear me referencing “spoons” for now on, you’ll know why. It will be our inside joke.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

PS. There are no surgical updates as the date was moved to Friday October 4th.
Cheers!

For those who want to walk, we will cut you.

New England summer weather is the worst for one who’s had an ACL replacement, fractured back, fractured hip, or currently broken femur. Humidity rises. Temperature rises. Humidity drops. Temperature drops. Throw in the occasionally thunderstorm and it all equals chronic pain.

However, I digress.

Several updates for those keeping score at home. First, dad is finally out of the hospital. After a brief 18 night stay between the Union Hospital in Lynn and Beth Israel in Boston, dad is half cured. Believe me, when it is called the “practice” of medicine, they aren’t joking.

Secondly, my son earned his orange belt in Kempo karate this past Monday. I am an extremely proud papa-bear. I love watching him perform karate. He puts in the effort and earns his awards.

Thirdly, my mom found a part-time job. This is excellent news. She has searched and searched to no avail. Hopefully, this will work out well, where she can stay busy and earn a little extra spending money.

Fourthly, I participated in my 4th American Cancer Society Relay for Life. For the first time, I was accompanied by my son and mom. Half-dozen friends came to support our team and assist in pushing my wheelchair around the track. I am grateful to everyone’s contributions, whether it was monetary, time or effort.

Lastly, surgery is scheduled for August 16th to repair and replace my left knee. This will include a revision of cutting & repairing my femur and a total knee joint replacement. I should be in the hospital up to 3 days, followed by 1 month of in-home physical therapy and 3-4 months of out-patient physical therapy. Surgery could have happened as early as July 19th but I opted to share my summer with Gabe instead of recovery.

I look forward to spending many summer days with my son, friends, and family and endure a long recovery from surgery in hopes of doing it all better next year.

Cheers!

The Bees Knees

Today, Thursday May 30, 2013, I got caught off guard. Allow me to explain. I was scheduled for a six month evaluation on my knees. This included X-rays and a surgical consult.

Here is a little history. This would be my 4th visit over the past 2 years with this orthopedic surgeon. Usually the conversation consists of him telling me I’m too heavy, on too many steroids & immunosuppressant drugs, and too young for a total knee replacement surgery. Needless to say today’s expectations were not high.

Fast forward to today. With X-rays completed, I waited for the doctor. Running 45 minutes late, my number was finally called. Johnny tell him what he’s won…a move from the waiting room to waiting in “A” room. Following another hour wait, the doctor eventually comes to my door.

He manipulated my knees, asked about pain, mobility and medication. I told him about my recent surgeries, hip fracture, and weight loss. Then, we looked over the X-rays. The right knee looked decent minus some corrosion of the knee cap. The left leg was interesting. Many angles showed little too no damage except on the outside of my femur. The bended view exhibited a blatant deterioration of the femur.

Now, I am preparing for the “you’re too fat, too young, etc.,” speech but it doesn’t come. Instead he offers me a cortisone shot and explains that we could perform a total knee replacement and knee revision. I decline the shot. (Avoiding needles is a must.) Having surgery is completely my decision and for a change, there is a willing and able surgeon.

What does the replacement and revision entail? For starters, they need to remove the corroded portion of my femur and add a metal plate. This is the revision. The total knee involved stems (rods) into the bones for support, the removal of the knee joint and installation of the new.

What are the cons? 1. I will outlive the replacement. Replacements last 10-15 years and I just turned 35. 2. Infection. 3. Rejection. 4. Amputation. All risks I'm willing to take.

However, if surgery is successful, I could walk with less pain, go up and down stairs, exercise and have more fun with Gabe. My personal plan is to keep dieting. I want to drop another 15lbs, enjoy the summer with my son, and then schedule surgery in early autumn.

That is the long and short of it. I could go on about the great family time & celebration in St. Louis last week for Beau’s graduation or my first successful relationship since the divorce or how amazing my son is but I’ve written enough this evening.

Thanks for reading.
Cheers!

Failure to succeed

Success vs Failure

I like to say, “You can’t be successful without the willingness to fail.” However, I am disappointed with my current failure to succeed.

My attempt to hold a successful large scale charity event for American Cancer Society ended yesterday. Due to poor sales and caterer cancellation, it wasn’t going to happen. Not going to lie…This will sting for a bit and unfortunately, I may decide not to Relay in 2014 and turn my attention to other foundations. I have enjoyed my time with Relay but I need a fresh start.

This weekend wasn’t all black clouds. I spent quality time with my Gabriel. He performed well at karate. We visited 2 parks, played football, went to dinner, and both volunteered at the Special Olympics bowling event in Danvers. Such a good kid.

What to say about my health? I’m tired. Both knees and both hips hurt daily. My back and right shoulder are sore. I have dizzy spells. Walking is a chore. Running is impossible. Stairs are challenging. I’m tired, so very tired. The next 5 weeks will test my stamina and resolve. (More details to come.)

I am overly appreciative to all the donations and support I receive for my charity and self. I understand times are tough and money is tight. Thank you all.

Cheers!
Adam

What is Hip?

Here’s the newest.

I encountered a new stabbing-like pain in my inner hip Sunday night. I went and saw an orthopedic hip specialist Tuesday morning. After several X-rays, a brief exam, and bone-chilling stare, the doc immediately ordered an Arthrogram joint MRI. Told me not to walk without crutches, not to drive unless without pain, and protect the leg and hip at all costs. There is either an impingement of the femur in the hip joint, a stress fracture, or both. Surgery is usually the only option.

How will this affect my everyday life? I can’t drive to pick up or see Gabe. I can’t participate in the activities, which I had planned to do with my brother this weekend. I can’t attend lodge meetings because it requires going up and down stairs plus walking. I will lose two days a week with Gabe as my ex is now placing him in an after school program. The joys and freedoms, I have grown accustomed to; are being stripped away.

Amazing! I beat cancer. I did the impossible. I should have died 4 years ago. However, here I am. A broken-down, beaten shell of a man I once was, alive, but yet unable to live. What a waste!

~Adam

Clinic update

Today, I paid a visit to my friendly neighborhood cancer institute and here are the results.

Blood work was normal. The burn on my arm seems to be healing properly. There is no puss discharge or discoloration. I needed an impromptu EKG due to the fainting, which resulted in the burn on my arm. I was forced into receiving the flu shot. The flu shot will probably not aid in my recovery from the current sore throat, cough, and stuffy nose, I currently have.

There are minor changes to my daily medications. Cellcept was reduced from 1000MG twice daily to 500MG thrice daily. I need to add Claritin D, a Flonase and saline nasal sprays.

Later this week, I will revisit the Brigham & Women’s for a left leg MRI and knee replacement consultation. A couple different variables will play into this possible surgery including my high risk of infection due to medication, the recovery timetable, medical insurance, and timing with Gabe’s schedule and school vacations.

I’m struggling with a few mental/psychology roadblocks and social issues, but there is nothing I can’t work though. It is hard being in a packed room and feeling like you’re standing alone, but is my problem to deal with.

That is all for now.

Cheers.

Post Thanksgiving update

Much has happened in a month. W/here do I begin?

Halloween has come and gone. I trick-or-treated with Gabe for the first time ever, despite it only being two houses. (My legs wouldn’t carry on.)

I visited 6 lodges (including mine). I met more brothers in the past 2 months than the past 2 years.

After 10 months of changing my diet and medication, I dropped 50lbs and finally fit into size 36 pants.

My son started a Lego program, karate, and turned 6.

I also celebrated 3 years in complete remission from Mantle Cell Lymphoma.

Amid double orthoscopic knee surgery, these legs of mine still aren’t meant for walking following 10 weeks of physical therapy.

OH! I would be remiss if I didn’t mention my fainting episode that left me with a 2nd degree burn on my right arm.

Recently, I had a bit of luck with the ladies. This is a change and huge surprise.
So, what’s next?

This Monday, I have counseling, a full blood panel, and clinic check-up at the Dana Farber. Thursday, I will be at the Brigham for a left leg MRI and consultation on a full left knee replacement.

The holidays are coming and in a few weeks, so will my brother. It will be a grand time in the city when the Brothers’ Richmond come together. Man, I miss that kid and so does his nephew.

I’m running out of material, but truthfully I just don’t want to indulge this blog any longer.

Happy post Thanksgiving! Gobble, Gobble. (sarcastic snickering)

Cheers!

Ghost Story

October is more than ghouls and goblins. I’m reminded of Ebenezer Scrooge. I realize, he is a Christmas character. However, it is the spirits, the ghosts of Christmas past, present, and future, who visit Scrooge on Christmas Eve that interest me. I, too, am visited by ghosts, though mine all occur in October.

October marks several milestones for me. The stem cell transplant is my ghost of October past. On Oct. 17, 2008, I was admitted to Brigham & Women’s Hospital to begin the stem cell transplant procedure.

Day 1 – A double Hickman line was surgically implanted in my left breast, matching the double IV-port in my right. It provided 4 IV lines for antibiotics, fluids, pain medication, and a food line. Days 2 & 3 – Nightly infusions of Cytoxan. Days 4, 5, & 6 – Morning and afternoon sessions of full body radiation. Day 7 – Morning session of full body radiation. This completed the prep process.

On Oct 23, 2008, the same night as the last radiation treatment, I received an infusion of stem cells. In the medical world, we call this Day Zero. The cells were removed from my donor (my brother). The hospital needed to eventually perform a full bone marrow harvest on my brother to collect the cells I needed, but Oct 23rd is the anniversary date of my birthday.

This is a time in my life, which will forever haunt me. It is my ghost of October past, for now and forever.

Oct. 29, 2009 marks a 3-year milestone. It was on this date at Dana Farber Cancer Institute, when my lymphoma was declared to be in complete remission. I can’t call it, the ghost of the present but perhaps the ghost of good fortune.

The truly frightening ghost is the ghost of future to come.

These birthdays and anniversaries are wonderful, but what does my future hold. What am I meant to do? Will there be a relapse? Will I work again? Will I walk without a cane or eventually stroll in a wheelchair. Will Gabe grow up, healthy and strong? Will he know the struggles I endured?

Living day to day not knowing what that future holds is scary. I think in many respects, we all share this fear. Oddly enough, I am not as afraid of dying these days. It seems my bigger fear is living.

Cheers.

Just another update

Treatment never stops.

This past Monday, I went to clinic for blood, check-up and Zoledronic acid infusion. The infusion is brief and is used to treat and prevent osteoporosis, which I have. Blood counts were stable besides high triglycerides and low IgG (immunoglobulin) levels.

So what’s next?

We treat the low triglycerides level with a new prescription for TRICOR (or the generic because Medicare won’t approve the brand). We treat the low IgG level with an IVIG fusion this week. And my immune suppressant medication is lowered as a reward for good overall blood counts. Of course, if I have any trouble breathing the meds go back up.

I have taken some form of immune suppressants or steroids for 4 years now trying to combat lingering graft-versus-host disease in my lungs. This will be our third attempt to taper and remove such medication from my everyday life.

My week wasn’t all gloom, however. Gabe lost his first tooth. He is the absolute best. Unlike Santa Claus, the tooth fairy did visit my home and he was a happy boy. I had the chance to get out of the house Thursday night. Saw some lost but not forgotten souls and received a few well wishes and compliments on my weight loss. It was a pleasant surprise.

This week will be busy. 2 visits to physical therapy. 1 Reiki session. 1 trip to Dana Farber. 1 infusion. 1 elementary school parent open house. 4 pickups, 4 afternoons, and 2 nights with my son. Who says being unemployed on disability is an easy job?

In the timeless words of Porky Pig, “That’s all folks!”

Cheers.