Having Fun Turning One

Having Fun Turning One
One year ago today I recieved a stem cell transplant.  As all of my blood stem cells were replaced with donor stem cells (my brother Don), the doctors and nurses view it as being "reborn".  Accordingly my transplant date is my new birth date. So I am turning one today.

I plan to celebrate my new birthday by spending time with friends and family.  Tonight I am  attending a fundraiser for the Bill Beattie Foundation and this weekend all the "Albert " family is getting together for a BBQ.  After this experience I truly cherish and enjoy spending time with friends and family.

My recovery continues moving in the right direction.  There are still good days and bad days, but I am now getting out, doing more and pushing myself to find my new "normal". Treatment side effects can be troublesome from time to time, but considering the alternative I am keeping them in perspective and learning to live with them.

 I am so fortunate and thankful to be able to celebrate this anniversary and look forward to many more.

All the best to you and your families on behalf of myself, Kelly and Samantha.

1 year ago....

...I was diagnosed with Acute Myeloid Leukemia.

It has been one year since I was first diagnosed with leukemia. Looking

back now, I have trouble remembering what life was like prior to cancer.

The battle against a disease like this is all consuming and has impacted me

deeply. I don’t know how I would have survived the physical and emotional

toll without the love and support of Kelly, Samantha, my family and all my

friends.

Today I am seven months post transplant and happy to report that I am

winning the battle and my recovery continues to go in the right direction.

Fatigue remains an issue and there still are some side effects from the

treatment and transplant that I am still dealing with. However the positives

far out way the negatives.

I am looking forward to getting on with life as a cancer survivor and finding

my new “normal” physically. The doctors say that one year after transplant

is a good measuring stick as to how well the transplant has worked and

what your “new normal” will be. So the work to get better and stronger

continues.

Thank you again to everyone for their support and positive thoughts. All the

best for a great 2012.

Welcome to the world- JerDon

A lot has happened in the 100 days post stem cell transplant.

After being discharged from the hospital ahead of schedule, I focused on trying to get my strength and energy back. This meant daily walks, rest and trying to eat a well balanced diet. It felt so good to be at home. Samantha has returned to Ontario to finish her last semester of school (Sam note: FINALLY I'll graduate in February!) , which has made our household a lot quieter (Sam note: Because everyone knows how much fun I am). However, summer has not been easy as I have encountered numerous complications (meaning: back to the hospital for periodic stays).

Now for some good news - A recent bone marrow test indicates I am still in remission and 100% of my blood has now been replaced with donor cells (thanks again to brother Don)...!

This is the best result we could hope for at this early stage and our family feels blessed, thankful and relieved. While there is still a long tough journey ahead, we have achieved our first major milestone. We don’t consider ourselves “out of the woods” yet, but it is a step in the right direction.

Right now I don’t feel " healthy" but the doctors remind me that recovery from a transplant takes a long time and I have to be patient. Also as my blood counts are still below the normal range it seems every virus within a mile somehow finds me, which is frustrating. But I am working to get better each day and with such good news feel re-energized. I will continue to remain under the care of the BMT Unit at the Tom Baker for the next phase of my recovery .

Keep the love, positive energy and prayers coming - it's working!

Jerry

Canada's Top Models

As you know, back in May our little family of 3 took a trip out to Victoria to get away from the hospital, Calgary and cancer for a few days. We had such a great and relaxing time in Victoria, as it also served to re-energized us for the biggest and hopefully last, battle; stem cell transplant. Before our visit to the island, I had asked a close girlfriend, Ashlene Narin, if she would be available and willing to do some family photographs for us. She graciously accepted and we conducted our family photo shoot at Fisherman’s Warf. The three of us had never been apart of any type of photo shoot, but we tried our best to channel our inner top model, and work it! The photographs turned out better then I had hoped, and we now have and incredible family memory. We wouldn’t have this gift without Ashlene…so thank-you!!! You did a fantastic job, and I can’t wait to see where this talent takes you!

Below are some of my favorite photos I’d like to share with you…

Howdy from Jerry - Day 35

Rumor has it that nurse Sam has been seen drinking margaritas on Scottsdale Rd. and partying at "W" at night . Another sighting was at the gay pride parade in Toronto riding a fire truck and later hosting a pool party and drinking fine wines in the Niagara peninsula. The call of Stampede has brought her home, but her Stampede obligations have kept her too busy to get to her blog duties as of yet so I am providing the update.

(Editors note (aka Sam): I apologize for not getting this out when my Dad actually sent it to me... I was too busy pretending to be a cowgirl and consuming adult beverages at the Stampede.... So the dates he mentions may be off by a few days...but you'll get gist, I believe in you)

It has been 35 days since Transplant Day. Here are some of the good things that have happened so far:

I was discharged 2 weeks ago ahead of schedule. I am now at home and go to the BMT clinic twice a week. My oncologist tells me that I am progressing well at this time - no infections or signs of graft vs. host disease, where my body rejects the transplant, other than a minor skin rash which is considered good (its a sign the new blood is seeing my old blood cells as 'enemies', and fighting them off).

My blood counts are close to normal levels now, most of my mouth and throat sores are gone, I've maintained my weight better than most, and I have been able to become more active, getting short walks in twice daily.

That being said, I still feel crappy - there are so many side effects from the transplant and the numerous drugs I am taking. Eating is a problem as I haven't had an appetite yet. The radiation makes food taste metallic, so it definitely closer to taking medicine than eating for enjoyment.

The doctors tell us this is the most intense and aggressive cancer treatment they give to cancer patients. So post transplant recovery will take quite a bit longer than recovery from my previous chemotherapy treatments. I am extremely tired all the time and this extreme fatigue is expected to last for at least 8 to 12 weeks.

Things are still very early and it is too soon to tell whether the transplant was successful. The next 65 days are critical as most complications arise the first 100 days post transplant. In fact, complications are likely and it will be a matter of managing the hiccups and taking it one day at a time.

So bottom line - so far so good.

On behalf of myself, nurses Kelly and Sam, thanks again for all your continued support and positive thoughts.

Life since transplant...

Today is day +15, and what a journey it has been since the transplant!

Prior to transplant, we were given a book that outlined all possible risks and detailed a grocery list of likely side effects. We have managed to put a checkmark beside most of the side effects… yay us. Our last 15 days have consisted of (but definitely were not limited to) fun experiences such as: lightheadedness, nausea, fluid retention, mucositis (painful inflammation and ulceration of the oral and digestive lining), stomatitis (inflammation of the mucosal lining of any structure in the mouth- tongue, gums, etc), rash and pain.

The worst side effect by far is the mucositis/stomatisis. It was incredibly painful and caused a great deal of discomfort and an inability to eat. We have weathered the worst of that storm, and with the increase of WBC, he is beginning to recover from that week of hell. People say you should always find a positive to every life experience. Positive: I found a new hidden talent. I make AMAZING blizzards. I’m no expert in the kitchen. My cooking skills are limited to popcorn, pancakes and yam fries. I am now excited to add blizzards to my list of expertise.

The aggressive chemo and radiation prior to transplant has once again forced my Dad’s blood counts to bottom out causing us to receive multiple platelet and blood transfusions during his recovery. With the aid of a few days of GCSF shots, his counts have stabilized and begun to show some recovery!

I would like to address one issue that I am sure has been on the minds of many; possibly even keeping you up at night. The pain in the ass. Has it been an issue? Have you been down to ultrasound, x-ray or CT? Is there a drain? Well, let me tell you. Ever since my Dad received his ‘piercing’ back in May, the pain in the ass has not been an issue (don’t get my wrong, its still ‘not right’ down there, but its no where near the issue that it caused us in the previous rounds of chemo). The doctors have pumped him full of antibiotics in hopes of keeping fluid accumulation down, and it appears the ‘piercing’ device is doing something in my Dad’s favor!

One last thing. Uncle Don is doing great! He experienced some fatigue after donating, but there have been no complications or negative side effects on his end. He's a champ.

Pics from Day Zero

We did it!! Family picture after the first transplant. The theme for that day was black, grey and white.

The room setup for the first transplant of the day. AND the incredible nursing team :) Little did they know they would be apart of a photo shoot

Uncle Don's stem cells getting hooked up. My Dad had 4 of those bags. 2 in the morning, 2 in the afternoon.

The stem cells were kept frozen, and thawed at my dad's bedside.... In a roasting pan. It was real silver... we kept it classy.