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.

Renting Time

Tonight, I ramble.

In my eternal struggle to sleep, I found “Rent” showing on the television. The movie adaption pales in comparison to the Broadway productions, however the soundtrack is still quite amazing.

In many respects, I can relate to the two main characters. Roger, the man struggling to survive a tragedy to find his one song in life. And Mark, the man filming the life around him yet forgetting to life his own.

Forgive me for sounding immature and trying to compare my life to a musical about “Bohemians” in New York City living with AIDS, but living with cancer is just as bad. Tomorrow could just as easily not come for me.

“Will I lose my dignity?
Will someone care?
Will I wake tomorrow from this nightmare?"

Find the dignity in failing to reach the restroom and needing to be changed. Find the dignity in vomiting every evening at 3am? Find the dignity in the inability to shower on your own, or not being able to kiss or embrace your child?

I won’t discuss if people care of not. Some do. Some don’t. Sometimes, I do. Sometimes, I don’t.

Will I wake tomorrow from this nightmare? This poses an intriguing question. Will I wake? Yes. But the nightmare will never be over. Every day is a fight, a struggle, and in some ways a nightmare.

Once, an oncologist told me I was too cavalier. Of course, I proved him right. I have been coughing, congested, and feeling downright shitty for the past 2 weeks. Wednesday in between physical therapy, picking up Gabe and a lodge meeting, I made an appointment to see my primary care physician. This comes only one weekend before my regularly scheduled blood, check-up, and infusion at the Dana Farber.

Will I wake from this nightmare? No. The nightmare is my life. In a way, we are all just renting time. But don’t feel sorry for me. I do it enough for us all.

Cheers.

Let's Get Physical

Physical therapy (PT) became on Monday after assessing my needs at last Wednesday’s consultation. Coming off of a double orthoscopic procedure there has been pain, stiffness, swelling, and lack of mobility.

During the assessment, I mentioned a certain snapping, which occurs below both knee caps and towards the exterior of my knee when I straighten my legs from a 90 degree angle. Sarah, my physical therapist, believes this could be my IT (iliotibial) band. It snaps loudly and hurts.

The iliotibial band is a superficial thickening of tissue on the outside of the knee, extending from the outside of the pelvis, over the hip and knee, and inserting just below the knee. See picture below.

At the PT office, they have heard a woman’s band snap so loudly in her hip, it sounded like she broke it. It commonly tightens on men, and in most athletes who typically run, hike, bike, or weight train (specifically squats). There are ways to loosen the band. You can utilize a foam tube like a rolling pin and roll over the band continuously. Heat helps and ice only if sore.

My largest concern is quad strength. Seeing I am unable to do seated quad lifts until the IT band loosens, we are working different avenues. Began hips thrusts while lying on my back. I feel like there should be a pole and disco globe, when I practice. Front, rear, and side standing straight legged leg lifts. Weighted-standing forward knee bends. I will go 2 days a week and perform the exercises another 1-2 days plus using the stationary bike.

All in all, I did fine. Slight tightness today coupled with a little dull pain. I hate to go back and say it was too easy, but it was. We’ll have to step it up a notch. The saying “no pain, no gain” doesn’t apply, but I need more of a challenge.

As for cardio, running is out of the question at this time. Running equates to 3 times your body weight into your legs with every stride. Given the current state of my necrosis, my legs could snap like twigs. So, low impact walking and bike riding are my options.

So what are my goals? My short-term goals are to walk without swinging my legs from the hip, be able to climb up and down stairs with both legs, and walk a 5K, before having either knee replaced. My long-term goal is to live a long life and continue fighting until my last breath.

Cheers!

I'm not done yet

A decade ago, prior to an ACL reconstruction, a battle with cancer, and several medication related setbacks, I used to workout 5 days weekly. It consisted mostly of weight work with a little cardio thrown in for stamina. My body weight was lower then, than now and I could bench press more than I weighed. I could do squats, leg press, played tennis, and golfed. Not so much now.

However, I am bringing back a theme which was forgotten in my last post. Hope. I forgot that despite having a learning disability, I graduated high school with honors and college with a 3.2 GPA. I forgot that despite attempting suicide 3 times coupled with an anxiety disorder, I recognized the problem and sought out help. And I forgot that despite being diagnosed with a rare life-threatening lymphoma and was all but read my last rites during treatment, I survived.

This past Thursday, I went for my post-op follow-up. They removed the stitches and showed me 25-30 images from the interior of both my knees. Pictures were pretty graphic and I saw the cartilage actually hanging from my femurs. Besides removing both pieces of peeled cartilage from the knees, he also removed bone fragments and debris. It was a mess. Then we discussed the future because I can feel the bone rubbing on bone, can’t do quad lifts, or stairs without discomfort and pain.

What now?

I read up on core decompression surgery, but my necrosis is too advanced for such a procedure. Also, the reason he couldn’t perform the bone grafting. So, I start physical therapy in 10 days. We will try and strength my legs to delay the eventual double knee replacement. Until therapy starts, I have found new ways to maneuver stairs, driving, sitting down, and standing up. Not ideal, but we adapt or die.

My goal is to maximize my time in physical therapy. It can only benefit me. I still aspire to run or walk a 5K. I aspire to golf again and to walk the course not drive. I miss weight lifting and the rush that follows.

I can’t promise not to complain. I will promise to not give up. I will put in the work. When needed, I will go back under the knife. Until then, I will continue to fight to survive.

Cheers.

Overdose!

Today, it isn’t the meds talking. It is me talking about the meds.

Prior to reading this post, it bears mentioning. Since the age of 14, I paid into the system before becoming disabled due to illness. I don't sponge. I pay out of pocket for Medicare Part A, B, and supplemental Part D, plus co-pays, clinics visits, hospital stays and have no dental coverage.

Now proceed.

You may remember my recent struggle obtaining a prescription that would cost me $562 out of pocket. I eventually got the medicine for $3 due to coverage by the MassHealth Safety Net. Now, the plot thickens.

Two days prior to double knee surgery, I attempted to fill a different script. I run into the same problem, but find out that MassHealth stopped my Safety Net coverage. Supposedly, I received an eligibility renewal form, which has yet to turn up. When I contacted MassHealth to refute this, and question what happens now, this was the response.

Sorry for your inconvenience. We’ll send a new form. You’ll need to complete it and send back for review. And what’s the turnaround time? 59 days from the day we receive your completed form.

Ok, let’s see. This were 5th grade math comes in handy. 3 days to send out form, 1 weekend to complete form, 3 days for them to receive it. Up to 59 days to determine my eligibility status…Um, so I may know by Halloween. Thank you for your assistance.

It gets worse. Post-surgery, my doctor needed me to take blood thinner injections for 10 days. He mentioned my insurance may not cover them. I was prepared and they did cost $231 out of pocket. Figuring this was a one-time drug and was essential to my recovery, I purchased it.

Back to present day. My mom kindly went to CVS to pick up a script I’ve been taking since last November and regularly costs me $40. Not today. $251! When she returned home, I was outraged and called my Medicare Part D supplemental prescription drug plan (WellCare) for answers. He says, “You are in the ‘Donut Hole’”. So, now I’m trapped in a F’cking munchkin.

No. It means, now I will be charged up to 60% on generic prescriptions and 50% on name brands out of pocket. I reached my coverage limit for the year. Apparently being on disability due to cancer with complications causing avascular necrosis, leaving me physically handicapped doesn’t justify a need for better healthcare.

Supposedly, social security offers aid that I once had but was dropped as of January without my knowledge. Tomorrow, I will spend all morning on the phone with social security in a venture for prescription drug aid. If they can’t help, I’m screwed. I don’t clear enough each month to afford the number of medications I take.

I try to end all of my posts with hope. Tonight, I go to bed scared. I won’t survive without the medication. Where is the hope in that?

I’m out.

One week post op

In my sordid yet realistic view on life, I believe pain must be experienced to truly experience life. Again, this could just be the pain meds talking but after what my mind and body have been thru; it works for me. Also, I really like the word sordid.

Here’s a brief post-surgery update. It has been a week. I am still experience stiffness, some soreness, and discomfort. The range of motion is getting better. I attempted to drive yesterday and was unable to maneuver my legs properly with the pedals. On a side note, I gained 5lbs in the hospital overnight and have lost 8lbs since coming home. This is extremely pleasing. I follow up with the surgeon next Thursday. He will remove the stitches and assess my progress.

Oddly enough, I have no further rants, topics or such to discuss at this time. So pass the bottle and twist the cap.

Cheers.

Drowning in Thoughts

Thinking is an unwelcome vocation, when it is half past midnight; your knees are sore; the meds aren’t working; and there is nothing on TV. So here I am for your reading pleasure.

You can be surrounded with all your heart’s desires and still feel alone. Oh, crap! Adam, don’t go on one of these self-pity rants. In case you missed it. Read the opening lines again.

I don’t live alone. Admittedly, I live with my parents. And God bless them, because I am not sure where I’d be without them. I have a son. He loves me. I know he loves me, because he tells me. He cuddles with me. He hugs and kisses me. I could get all the same affection from a dog without 18 more years of child support payments, but really… where’s the fun in that? Friends…they come and go. Throughout your life, they always do. And I wouldn’t be here without my brother. He is my life blood.

Maybe, I’m getting off track or maybe the meds are finally kicking in. The point is. I feel alone. I could be standing in a sea of a million people and feel alone. I always have.

I participated in a program in college called “Lost but not Forgotten.” We’d paint our faces pale and put dark circles under our eyes. We’d wear T-shirts explaining how we were one of thousands of college students, who would be lost this year due to a drunk-driving accident. We’d ask permission of our professors not to speak for the day and then remain in silence from dusk ‘til dawn. It was the one day everyone wanted to talk with me. That never made sense.

I was in a rock band in high school called Rugged Sara. (Cheap Pop!) I had my regular group of friends consisting of nerds, band dorks, and freaks. We played one show at the high school and some of the “cool” kids then noticed me. Of course, everything is short lived. We broke up the next year and I fell into obscurity again. I never understood that either.

I was the last to be picked for kick ball. Good reason, I sucked. I was last to get a science partner. Bad reason, I was fat and a dork. I’ll never be a model, super or plus-size. I like to eat too much. I’ll never be NBA Hall of Famer. I’m white, short, clumsy, and slow. But I like to think I’m a good person.

We all have faults. Damn, I could start writing tonight until Tuesday and probably not finish a list of mine. I don’t have a clue what my point is. Maybe, there doesn’t have to be. Some things just are. I guess I am too.

Cheers.

Surgery results

Like almost every installment of my blog, this has good and bad news. In this installment, I will attempt to explain what did and didn’t happen during Wednesday’s scheduled surgery to repair a fracture in my left leg.

Due to avascular necrosis, there was a fracture in my shin bone. My surgeon’s expectations were to scope the leg; then remove a bone graft from my hip; drill a few holes; pack the holes; and finally insert two screws across the top of the bone to hold everything in place. I am sure you can imagine my surprise, when I came to in the recovery room to find this couldn’t be done. Needless to say I walked in with a broken leg and left with a broken leg.

This is what did happen. He performed scopes on my both knees. In each knee, he found the same problem. The cartilage between my thigh bone (the femur) and the knee joint had peeled off the femur. It was hinging on the joint, which resulted in pain, instability and discomfort. The cartilage was removed from each knee and I will eventually need both knees replaced.

Here is the good news. My right knee feels much better. Better today than when I entered the hospital Wednesday morning. Give me a few weeks of physical therapy and it should hold up for a while. The surgeon believes the fracture looked worse on the MRI than when he took a look inside. So even though there is less pain with the peeled cartilage, the overall stability of that leg is still questionable.

Luckily, I have a high tolerance for pain. I was told most patients wouldn’t have been walking around like me, let alone walking around without the aid of pain medication. This puts me in a better position to hold off further surgery for a longer period of time.

Am I disappointed? Yes. Is my son going to be disappointed, that daddy still can run? Yes. But I have some relief and it is better than the alternative. Monday, I was trapped on a flight of stairs with tears in my eyes. Today, I walked a corridor and climbed up and down stairs with minimal pain.

I’ll stay tough. I’ll stay positive. Give me a week or two and I’ll be out and about. Thank you for all the well wishes. I also want to thank brothers Prousalis and Davidson for visiting and mom and dad for taking care of me.

Cheers.

Business just picked up

Having intelligent, well-respected, personable, and prompt doctors are a blessing and a curse. Curse, you say? Yes, curse. Only when referring to their ability to wake you from a sound sleep at 8am with bad news.

So, let’s get down to business because I am awake now.

Surgeon: So what’s going on with the knee?

Me: My knee popped when I was trying to stand up yesterday. I have trouble weight bearing and the pain is tremendous.

Surgeon: What do you want to do?

Me: We probably need to scope it, but you said that might not be a good idea with everything else you’re already doing. And how will I manage to get around, especially up my front stairs with 2 surgically repaired legs.

Surgeon: Some low mumbling and muttering to himself… random terms included; partially torn ACL, cartilage tear, ruptured meniscus….umm. We can do the scope. It won’t be too bad. Clean up the debris behind your knee and the torn cartilage, and assess the total damage to the ACL.

Me: What kind of shape will that leave me in?

Surgeon: It really won’t be much worse than what was already planned. Maybe an extra day in the hospital, but you’ll be fine.

And there we have it. What started as an aspiration and cortisone injection has turned into orthoscopic knee surgery. I knew if I kept buying lottery tickets, eventually I’d get a winner. Looks like my numbers finally came up.

Cheers.

It just went from sucks to blows

Snap. Crackle. POP!

Allow me to get the good news out of the way. All of my blood counts today were as good if not better than we’ve seen in months. My counseling session was productive. My oncologist feels everything is moving in the right direction. I can remove one prescription from my daily meds and it looks as though the bacterial infection is all healed.

However, like any good Shakespearian tragedy, the main character needs a flaw. My legs presently are the flaw. As you’ve read in prior posts, an aspiration, injection, bone graft and fracture reconstruction are planned for this Wednesday. The plot thickened this afternoon.

Imagine yourself sitting in the waiting room for your name to be called. It feels like winning the lottery, when it happens. Woohoo! I get to move from this waiting room to waiting in “the” room.

In an effort to stand from the prone position, my right knee pops. I hear it. I feel it. I’m now concerned about it.

This continued to happen on 3 more occasions during my day at clinic. The drive home was difficult because moving my leg from pedal to pedal became a painful chore. While exiting the car at home, the knee popped again and here come the stairs. Stair 1 – pop. Stair 2 – pop. Stair 3 – I collapsed on the staircase from exhaustion and pain with tears in my eyes. It took about 10 minutes but I eventually arrived on the landing after conquering Mount Saint Richmond (6 stairs).

Needless to say, I am now using a walker instead of crutches. I now have a call into my orthopedic surgeon. I am now wearing the brace for my fractured left on my right knee. And finally, I am favoring the fractured left leg over the right one.

Despite everything, I am still confident in my surgeon and probable success of surgery. It might just be a longer recovery.

I pray for one pain-free day. It may not come before I’m buried but at least it gives me something to look forward to. Grisly but true.

Cheers.

Avascular necrosis - A pre-surgical update

Avascular necrosis is a disease where cellular death of bone components occurs due to the lack or interruption of blood supply. Without proper blood supply, the bone tissue dies and bone collapse and fracture. In cases of avascular necrosis involving bones of a joint, it usually leads to destruction to the joint surface.

There are at least 15 didn’t factors that can cause avascular necrosis. Three of which, I have been exposed to. They include chemotherapy, radiation, and prolonged steroid use.

Today was my last pre-surgical consult. I scheduled the appointment, so there would be no surprises upon walking in the operating room. The plan for the right knee is still same. Drain (or aspirate) fluid from the joint and inject a cortisone shot. That’s the easy part. The left leg gets tricky.

I know my bout with cancer was rare and we were sailing unchartered waters. What I didn’t know was we are now doing the same with the left leg. He’s never performed this surgery on a patient with avascular necrosis. Apparently, there is a difference when repairing a bone that was broken by falling, sports, or being beaten in an alley with a pipe, then one with bone necrosis.

He gave an 85% chance it “could” be successful, or in the least buy me a little time before a full prosthetic knee replacement. This is a complicated surgery. There is a lot of stuff going on. There is NO physical therapy until I’m off crutches. It wouldn’t really matter anyway. We aren’t trying to strengthen surgically repaired muscle; we are trying to build bone. Is anyone catching my drift?

Theoretically, the procedure makes sense. Scope the knee to assess the complete damage. Make one 1” incision on both sides of the knee. Drill two holes into my fractured fibula. Take a sizeable bone graft from the right hip. Pack those two holes with as much bone graft as possible. Insert two large screws along the top of the bone, just below the knee joint to structurally stabilize the bone from collapsing. It is sound theory, but very risky.

Ok, that is all the semi-bad and medical information. Here’s the good news. I trust my surgeon. He is the only of three orthopedists, who gave me an alternative to a total knee replacement. I am young and don’t take much if any pain medication currently. This increases my chances of success. I’ll be partial weight bearing for 6 weeks on crutches or with a walker. That is my decision.

Sometimes you have to take a leap of faith. I did when I fought Mantle Cell and will when my leg is reconstructed. I have the strength and the will to do it. Either way, you haven’t heard the last of me.

Cheers.

Give me strength: Part 2

“What is joy without sorrow? What is success without failure? What is a win without a loss? What is health without illness? You have to experience each if you are to appreciate the other. There is always going to be suffering. It is how you look at your suffering, how you deal with it that will define you.”
― Mark Twain

Yesterday, my post may have taken some of you by surprise. If you’ve learned nothing else from this blog, you should have learned by now, I’m a fighter. So far, my track-record it pretty good. I have accomplished and experienced plenty. I have fought and survived the rare and aggressive.

I flipped my wig yesterday, but with good reason. There is a chance (minor) that surgery could be postponed due to the new bacterial infection. Again, it is a small chance, but for my own sanity this procedure needs to be completed. And like every struggle from childhood to the teenage years, through college, into the real world, marriage, cancer, divorce, remission, and setbacks, I’ll beat the snot out of this next huddle.

I have a ton of living still to do. I need to golf. I need to run a 5K. I need to visit St. Louis with Gabe. I need to sit on top of the Green Monster, fire a crossbow, and witness the changing of the guard.

I use this blog as therapy. If you get inspiration, a few minutes of entertainment, or nothing at all, I will continue writing. I am an emotionally driven individual. I am learning to release these emotions instead of burying them and eventually exploding.

I am going to be fine. I’m a survivor. I’m a fighter. I’m a dad and a damn good one. I have NO regrets. There may be some second thoughts but NO regrets. Every struggle has shaped me into a loveable, sometimes short tempered, over-emotional, but devoted, funny, and caring son, brother, father, and friend. I will continue to be sporadic and continue to try to help and inspire those who fight every day.

Cheers!

Give me strength

“If there is no struggle, there is no progress.” – Frederick Douglas

I believe Mr. Douglas had me in mind, when he spoke these words. I prefer not to complain when possible. I hate pity and never want to experience it. Struggles come and go but a time-out once in a while would be nice.

Today, a skin culture came back positive for a bacterial infection only 9 days from a complicated leg surgery. For the next 7 days, I will be taking an antibiotic 4 times daily and the only major side effect is uncontrollable diarrhea. Well sh*t! Where do I sign up?

Not sure what dark moon I was born under or what bet my parents lost with G-d, but life was never easy for me. It took me forever to potty train. My weight has always been an issue and I was constantly reminded with schoolyard teasing and ridicule by my grandfather (RIP). I have been in and out of therapy since my first suicide attempt in high school, my anger management in college, anxiety, depression, cancer and divorce.

Surgery is scheduled next week to fix a leg that is completely f*cked up due to the cancer treatments that saved my life and left me with a fractured back, two blind eyes, a son who reminds that his mother is more fun than me, and pimp limp, I didn’t want.

I put on that happy face and stuck it up. I’ve struggled to survive 34 years with very little progress. It seems whenever I take a step forward, someone is there to pull the rug out from beneath me. I want to G-d to give me a reprieve. I want him to stop testing my strength and will. My shoulders are only so wide and if he didn’t notice my legs are crumbling from the extra weight.

My mind and body may be far from stable but don’t ignore me. I’ll live with the ramifications of my actions, but I refuse to live in regret. Call and invite me for drinks, see if I can handle the road trip, or want to see that new movie. I can only say yes or no.

I repeat. I don’t want your pity. I just want one day at Mr. Willa Wonka’s chocolate factory with Gene Wilder singing Pure Imagination and a break from the cold, hard reality that is my life.

Cheers!

Soaking up the Sun

Almost 1A.M. on July 26th and of course, I am still awake. This post was originally planned for a different topic. However, life continues to get in the way.

This evening, I attended the Wrap-up dinner for the 2012 ACS Relay for Life. More people attended this year’s final meeting than the past two years combined. It was a great turnout. Had the opportunity to meet new people and reflect with old friends on the success of Relay.

I return home from the dinner to a social media posting from a close friend, who just had a skin lesion removed today. She saw a dermatologist yesterday and he seemed to be concerned. Today the lesion was removed and sent for testing. Now, I am going to lay down some skin cancer 101.

There are 3 common forms of skin cancer; Basal cell carcinomas (BCC), Squamous cell carcinomas (SCC), and Melanomas.

Basal cell carcinomas are typically present on sun-exposed areas of your skin. They rarely metastasize or cause death, and are easily treated with surgery or radiation. Next up is Squamous cell carcinomas. SCCs are also common, but much less than BCCs. They metastasize more frequently than BCCS. However, the metastasis rate is quite low, with a few exceptions to the lip, ear, and patients, who are immunosuppressed. Lastly, we have Melanomas, which are the least frequent diagnosed of the 3 common skin cancers. Unfortunately, treatment is aggressive and they metastasize frequently and could eventually cause death once they spread.

Our collective breath is being held in anticipation of the biopsy results. Once the classification returns, treatment could be as simple as using a chemo cream and some localized radiation, or as aggressive as intravenous chemo and oral medications.

I seldom write about anyone other than myself, but she is a good friend and it is good reason to discuss skin cancer prevention. I understand many people love the sun and always want to be under its rays. You just need to take the proper precautions. Don’t use tanning booths. There is really no reason ever to fake and bake. Secondly, when you go to the beach, pool, or are simply in your yard, be sure to apply sunblock. Also, remember to reapply after sweating and swimming for long periods.

Cancer comes in so many forms and there are still so few cures. Don’t play with fire and tempt fate. Smoking is bad for you. Too much sun is bad for you. Please take precaution with your lives. It doesn’t only affect you. It affects everyone around you.

Cheers!

PS:
Stacy, I am sending you positive energy and prayers. The darkness time is now, before diagnosis. Once you know what the challenge is, I am confident you can beat everything. You are one the stronger women, I’ve ever known. You can do anything and I’m always here to help you through.

Gaining Focus

“Life is what happens to you while you are busy making other plans”. --John Lennon

Most patients, who are fighting Mantle Cell Lymphoma, don’t survive 4 years past diagnosis with or without treatment. I was diagnosed in April of 2008 and am still alive and sitting. So much for statistics! However, I am in no shape to resume a full-time job or start a new rugby career, but there are few things I may like to accomplish.

Everyone has heard fables of the hypothetical ‘bucket list’. Hence, the list of things you’d like to do before you die (kick the bucket).

I never gave a bucket list much thought. I was always too concerned with surviving than living. It didn’t hit home until 7 months ago, that I never moved past the treatments even though they had ended. My life was cancer, instead of cancer just being a part of my life. I returned to therapy and am now setting goals and making a list. This provides me with structure and something to focus my energy and time towards.

After I recover from knee/leg surgery, game is on! Technically, the list has already started. I participated in a food challenge. I didn’t complete it, but I competed. Now I just need to win one. Captained 3 Relay for Life teams, increasing our goals every year. I traveled to St. Louis for a beer festival. I played in a rock n’ roll band, which performed at the Waterfront in Boston, and recorded a demo. Not a bad start.

I want to run or walk a 5K. I want to travel to England, California, and Alaska. I want to eat a Bacon Waffle at the Magnolia Pancake Haus in San Antonio. Make a hole in one (on a real course, not mini-golf). Take Gabe to the beach. Try goat. Some will be easier than others, but I have nothing to lose and only great experiences to gain.

As Ferris Bueller would say, “Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.”

Be spontaneous. Enjoy life. Enjoy your family and friends. Try new things. Laugh often and loud. And always be proud of who you are.

Cheers!

Reality Check

Morning: Wake up and take 1 pill. Wait 30 minutes. Take 2 pills. Wait 30 minutes. Take 1 pill. Wait 30 minutes. Start breakfast. Halfway through breakfast take disgusting, thick, yellow suspension liquid. Complete breakfast. Take the remaining 7 pills. Now, I can start my day.

Noon: Take 2 pills. Wait 30-45 minutes. Have lunch. Take 4 more pills. Go back to my day.

Dinner: Start eating. Halfway through eating enjoy another spoonful of the yellow liquid. Finish eating and relax until the sun sets.
Evening: 2 hours after my evening snack, take 2 more pills. Wait 30-45 minutes. Take 5 more pills.

Bedtime: Before I lay down to sleep, I take 1 sleeping pill. This will complete my daily medication cycle.

Of course, there are those days when I need to take nausea, bowel, anxiety, or pain medication. I can rack up another 4-6 pills easily. In the chance, I come down with thrush, a fungal mouth disease, there is a swish and swallow suspension I can use as well.

Then, toss in (and don’t laugh), showering, using the bathroom (on a more than normal basis), picking up, dropping off, and taking care of my son, going to appointments, errands, Masonry, and occasionally doing something for myself, it makes for a busy schedule.

When the public sees a young man walking with a cane, they assume he wants to set a trend or look cool. They don’t see the heavy duty brace on my knee. They don’t see the cancer scars on my calf and ankle. They don’t see the fractured back. They don’t see the hidden scars, the hidden pain, the hidden child scared to death he won’t see the light of the morning star.

Don’t pity me. Don’t say you’re sorry. I don’t want special treatment. I just want to be normal. Whatever that may be.

Cheers!

The Wheelchair isn't just for Show.

Whether you are comfortable with the term handicap, handicapped, impaired, or disabled, they are words of similar meaning. Given the most recent setbacks concerning my legs and knees, I obtained a handicapped placard. It should allow me to park closer to buildings, making walking less labor intensive.


Although, I possessed the placard for less than a month, I have noticed the common public’s blatant disregard towards the disabled for decades. My father has dealt with this behavior for nearly 30 years after his right knee was fused in 1982.


Here are two examples from just last week. I went to the grocery market and attempted to park in the last available handicapped spot. When I went to pull in, the young carriage boy had collected all the grocery carts into the spot making it impossible to park. I was far too dismayed, when the young man finally noticed me waiting in my car, so I drove away.


Secondly, Gabe goes to a day care center inside a small strip mall that also includes a Dunkin’ Donuts, pizza shop, convenient store, and karate studio. There are limited handicapped spots in the lot. I pull in to drop Gabe off Friday morning and a stone mason’s truck is parked on the outside yellow striped lines next to the handicapped spots. How in the blue hell does this help a disabled individual if they have a van or truck with a wheel chair or walker? I’m sorry that you need your caffeine fix so badly, you care so little for the disabled veterans, the elderly, or medical patients who actually need those spaces for a reason. Maybe you could do us all a favor and drive off a cliff.


Last night at the mall was my most recent incident to report. I circled the parking lot 6 times to find a spot; handicapped or otherwise. My placard was up on the window and I eyed a space close enough to comfortably walk from, but a large SUV looking directly at me (with hanging placard) decided to disregard my need for that spot and cut me off. I did finally find a spot. However, the greatest public display of reckless abandonment consisted of the sarcastic jabs I took from the hostess about getting a table close to the door. (That, I did not request.) “Sir is close enough? Is it too much of a walk for you. Do you think you’ll make it? Ha, ha, ha.” Go F’ck yourself!


I don’t use this forum to bitch often but I feel the general public needs to be put on notice that this handicapped person is going to start throwing cane shots at ignorant fools.


On that note, I hope everyone had a happy and safe 4th of July. Love to my supporters and a middle finger to the haters.


~Cheers!

Relief is on the way

Good afternoon to all, It has been a long time. Too long for me. Not long enough for some. For those familiar with me from facebook, you may know the happenings in my life. Most recently, my legs are the main focus. The pain has been ongoing for 2 years and it is time for a little relief.

Here is the short and long of it: Besides a minor meniscus tear in the left knee, structurally the knee is fine. The problem lies in the Femur, Tibia, and Fibula bones. I have what is called bone marrow necrosis. There is poor blood circulation, so the marrow is decaying. The bones are fracturing and collapsing almost like a pothole on a road. What seemed to be a minor problem a few years back, has become chronic.

The right knee has seen the operating room 3 times in the past 18 years. Two scopes and the ACL was reconstructed a decade ago. Since I now favor the left leg, the right ACL is tearing as well as my menial meniscus.

What's the plan you say? The surgeon plans to scope the right knee. Clean out the debris, drain the fluid and inject a cortizone shot. He will then scope the left knee to clean and assess the total damage. Then roll me on my stomach, extract a bone graft from my right hip, roll me again and insert pins and screws to support the bone and finally inject the bone graft into my bones; hopefully stimulating new bone growth. Once I stop favoring the left leg, the right knee should heal on its own. Much less invasive and straining, then my last 2 opinions who suggested full knee replacements in both legs.

As we say in lodge, "It is better to be seen, then viewed." Happiness comes in spurts as does pain. I try to live my life right. Be a good dad, a good son, good brother, and good friend. I give when I can and expect little in return.

Thank you to all my supporters. You know who you are and I love you all.

~Cheers