Saturday, October 20, 2012

Whirlwind Past Three Weeks!

I see I haven't written since September 20th, so I guess it's time to update now that things have settled down and I can take a breather!

A lot has gone on since I last wrote, and my journey with chemotherapy has commenced once again. Bendamustine (Treanda) was approved for me on a compassionate basis. This was not easy to get and I have to thank Debbie Gammon in the Cancer Centre Pharmacy for her hard work to get this and also to get it funded for me.

It all started with blood work on Sept. 28th, followed by an appointment with my Medical Oncologist Dr. Kanjeekal to go over my blood work and treatment plan for this round. To start with, my Haemoglobin and Platelet counts were still quite low which explains my tiredness lately and also why get out of breath so easily now.

My first treatment of Bendamustine was on Wednesday, October 3rd. The infusion last about an hour and everything went well, I even brought Peanut Jr. along with me for company! October 4th was day two and once again it was an hour infusion of Bendamustine. All went well this time around also. Now comes the wait until the next treatments. I will be on a 28 day cycle with this, and I believe it will be a total of eight cycles, I will have to reconfirm that next visit as I'm not 100% sure of this.

Me and Peanut Jr. at Chemo!
Prior to my first Chemo on the 3rd I also had a pre surgery assessment at the hospital. This was to get everything in order for the surgical biopsy of the node on my left jawline. All went well as at that time I was still not sure the surgery was even going to happen because of my low blood counts my Oncologist thought it might be best to cancel it for now. But at my request to continue she put it in the hands of my E.N.T. Surgeon Dr. Elbreki.

After Biopsy.
Dr. Elbreki was also concerned about the low counts and if they were at at number comfortable for him he would proceed. If not I would agree to a blood and or platelet infusion and then proceed.
All was fine the day of surgery on Friday October 5th, which was the day after my last Bendamustine infusion. The surgery went well and we did it with just a local anaesthetic and "twilight" on hand to use mildly if needed. After about 45 minutes in recovery I was allowed to leave after eating some cookies and drinking a ginger ale.

Next up was an appointment with my Palliative Care doctor Dr.Giddings. At this appointment it was decided that due to all that is going on and still have some pain in my hands and feet, we would increase my medication by a few mg. just to stay on top of the pain going on.

Chemo Port placement.
This was followed on the 11th of October by another surgery at Hotel Dieu - Grace Hospital to insert a Chemo Port which is used for the infusion of Chemo and for blood work when needed. They had a bit of trouble getting a vein at the first chemo treatment, even after warming my lower arms and hands with warm blankets. So thus the port in order not to have to poke around looking for veins all the time.

I had mentioned to my CCAC worker when she asked,  that I had fallen a few times and was having episodes of lightheadedness, She said that she was going to send out Physio and Occupational therapists to assess the apartment for my needs to stay safe and for what my personal needs would be for keeping safe as well. The Physio consultant came on the 12th of Oct. and determined that I should have a proper cane and as well a wheeled walker for getting around outside the apartment.

C.A.L. the Doors L.A. Woman
Finally a break in all of this whirlwind of activity! We were given tickets to us by my Facebook friends, Alicia N-Dana to see Classic Albums Live, perform The Doors album, L.A. Woman in it's entirety. It was an awesome show and the seats were fantastic. These guys are good and you'd have sworn you were at the real thing!  They followed the Album set by a short intermission, then came back to perform a whole host of Doors classics. It's just wonderful to get away from it all to listen to some good music and forget just for that time, all that is going on in my life.

"M" Rail.
Back to it all on Oct. 19th when the Occupational Therapist came to assess the apartment for my needs here. After her inspection and talk with me, it was decided that my needs here were to get an "M" rail for the bed, an elevator ring for the toilet to raise the seat 3 1/2 inches and also for a shower / tub chair.  She said all these would be delivered and set up for me in a few days, which they were on the 18th. With the exception of the shower seat, the M rail and the seat elevator are great additions that are really helping me, but the Shower chair just doesn't feel comfortable, so I may be sending that back after 30 days. I have all of these free for 30 days to try out, and then the option to purchase them at a discounted price or send them back.
So we'll see how the next days go to see how I feel at the end of it and if I'll be purchasing any of it or sending any of it back.

My Social Worker
Nancy Hannon!
My Dietitian Donna Danelon
and I at the Cancer Centre.
The morning of Oct. 19th was very busy with appointments. It started with an appointment at 9am with my Social Worker at the Cancer Centre, Nancy Hannon. I discussed with her the the options I have with regards to the equipment I just got, and that I will also look on Ebay or Kijiji to find out if I might be able to get the same items used or new at an even lower price, which I will do.We also discussed all that has been going on with the chemo starting and just the overall whirlwind of activity over the past weeks. I then went over to the Lab for 10am to do my weekly blood work. after that was an appointment with my Dietitian, Donna Danelon. The topic of discussion has been and still is the rapid weight loss I've been experiencing and the fact I need to eat, even though I have no appetite at all. She also sent a prescription upstairs to the Pharmacy at the cancer centre for 5 cases of Ensure, this will ensure that I'm getting the protein and calories I need to try to maintain my weight. When all of this started just over three months ago I was approx. 330 lbs.and now currently as of this writing I am down to 262.2 lbs! Too much too fast but with no appetite, I just don't know what more to do.

Wednesday after all of that we had tickets that I had purchased ahead of time to go see Led Zeppelin, Celebration Day which was filmed in 2007 but just released now. Again after a busy day and whirlwind of activity, I was able to get away from it all and lose myself in some great music.

What an awesome show it was, age has not affected them at all, if anything it's made them better. Jason Bonham did his dad proud replacing him on drums, John may you forever R.I.P. and know that Jason has got it!  What a night it was, so now the DVD is on my wish list!! Thank you Led Zeppelin for letting me "get away from it all" just for a moment.

Thursday morning I had my follow up appointment with my E.N.T. Dr. Elbreki and prior to the appointment I had removed the bandage and during a shave I accidentally "caught" the stitch and pulled it out, however he said it all looked good and he went over the Pathology report with me which was back. No real surprises but there were some new things that have come forward. It appears I have a "coexisting and clonally identical classical Hodgkin lymphoma and nodular lymphocyte predominant Hodgkin lymphoma". A mixed up mess it is, but then again what's "normal" about me!

That pretty much brings things up to date and where I'm at now. So the journey continues, my next chemo treatments are on the 31st of October and the 1st of November. This is all after my follow up with my Medical Oncologist Dr. Kanjeekal and blood work. Stay tuned for my next writing it as usual may come at any time!

So for now "Trust your Journey" as "You'll never know how strong you are until being strong is the only choice you have".


  1. Coexisting and clonally identical identical classical Hodgkin lymphoma and nodular lymphocyte predominant Hodgkin lymphoma. What the eff does that even MEAN? Holy moley. Sending love and prayers your way.
    Heather L-K, from the crazy train.

  2. This link is to one of the better articles I found about it. Thanks Heather.