Go enjoy life!

Enjoying life on the 30,000 Island Cruise!

Woo hooo! 17 followers, I'm on a roll!

So here is the latest. I seen Dr. Kanjeekal my medical oncologist this past week, and blood work was fine. We discussed my second opinion with Dr. Ramchandren in Detroit and also what they discussed between themselves.

I can say that after talking with Dr. Kanjeekal about the opinion of Dr. Ramchandren that I have an Allogenic stem cell transplant sometime in the near future, I have come to the conclusion that is is just too risky and now have to look at it as a quality of life issue. My discussion with Dr. Kanjeekal just reaffirmed my thoughts about what the transplant would do to me physically. I did however discuss going on the donor list for a stem cell match. I had the HLA blood test required to go on the list yesterday.

It had come down to, do I want to do the transplant and the risks associated with it to get a 50/50 shot at a cure or maybe ten more years of life, but with the physical pain that will come with that. Or, do I want to do the watch and wait, do chemotherapy as necessary and keep things at bay for two to three years or maybe longer as I am now, and not with the increased lasting pain of the transplant.

So I have decided on the latter and will do the watch and wait with chemo as necessary. I have already thought and researched this over the past year in the event it ever came to doing another transplant. So this is not a quick decision, but rather something that I have researched and thought out very, very carefully. I have also had conversations with all of my doctors about this.

So I shall do what Dr Kanjeekal suggested on my previous to last visit, and that is, "go enjoy life!" Not as simple as just that though because on a disability pension you just don't have enough left to travel, or do things at will. We will find things to do though that are enjoyable. I will keep entering contests, which has become a hobby for me as of late. I have won a few, but currently in a "dry" spell! I'm sure something I forgot about will pop up as win from a contest I entered and forgot about. Who knows there's always the lottery.

Did you know the most common name for significant lottery wins by males is Tim! So there, I already have an advantage that cuts down the odds. Yeah, I know big dreamer but you never know! Can't win if you don't have a ticket either.

I do have the actual Million Dollar Bill pictured here. It's around somewhere, Brenda asked me one year what I wanted for either my birthday or Christmas and I replied, "a million dollars!" Well to my surprise I got that million dollars, non-negotiable of course.

Speaking of photos, the one at the top of Brenda and myself on the cruise was taken when we were up north on a getaway we took after my transplant and also just after Brenda's surgery. The trip was possible through Cottage Dreams Cancer Recovery Initiative. They have getaways all over Canada for cancer survivors and their families at no cost! You just have to get your own way to the cottage and buy your own groceries. They are a great organization doing great things for survivors

So as you can see by that, there is things you can do without costing you a lot of money, or in some cases nothing at all. You just have to search them out or ask. Never be afraid to ask, I've always said, "what's the worst someone can say? No. Your already at no!".

Just to add, as I said the van is gone to the scrap man, and we are in the process of working on a new vehicle, maybe by next week we can have something of our own to ride in. It has been through family and friends that we have currently been getting around and we thank you all for your help and assistance. It is very much appreciated. Besides, we've had Brenda's mom's car for most of the time, and that means she's grounded while we have it . The bingo halls are missing her and have been struggling since! A little humor there.

So I leave you with love and hugs no matter where you are in your journey.

Choices

Now that I have seen Dr. Ramchandren in the U.S. for my second opinion, and have rec'd the results and his opinion I am quite torn on what the future brings me with regard to treatment options. The options mentioned at the appointment were R-ABVD, ICE, or even RITUXIMAB alone. The thing that has been mentioned by 3 Oncologists I've spoken with is that I would need another transplant. This time an Allogenic Stem Cell Transplant.

This is what has me torn. I have gone through the transplant process before with an Autologous transplant in 2008. I feel I have not totally regained my strength or immune system since that one. That, is part of the reason this scares me. I am still weak and have a compromised immune system from the last one, I know what I went through with that one. Not sure I want to do that again first of all, but the risks of an unrelated donor, allogenic transplant scare the hell out of me. The prospect of having a match with a sibling donor have become slim to none. I've been trying to find the good in it but the odds of even the good are against me.

So I look at it this way, quality of life for the short term or being sick, increasing the pain of my neuropathy, and then there's the possibility my system does not come back up to normal after the transplant. That in itself is enough to scare the hell out of anyone. I took that risk the first time, taking it again just does not make sense to me right now.
At the end of this post is an excerpt from "The Journal of The American Society of Hematology" which speaks of some of the death rates related to this procedure during one study, which does not mean this happens in all cases, but worthwhile reading none the less, as it is a side effect no matter how small or big that I have to consider.

I have an appointment in the next week to see my oncologist here in Windsor and I will be having a pretty in depth conversation about it to say the least, and to go over the report from Dr. Ramachandren as well.

Similar to mine minus the striping

So not fun right now, dealing with looking for a new vehicle, as our van has an "unknown" electrical problem which keeps activating the anti-theft system and shuts down the van as your driving it, this is when it will even start! Anti theft system shuts down everything, just like pulling a plug on something electrical. So the cost of search out the problem and TWO licensed mechanics not being able to find the problem we have decided to write it off and just move forward looking for a new vehicle, "disposing of" or selling the old one a.s.a.p. as it needs to be moved from where it is. And then there is my health issues as well as Brenda's health issues, her ulcer has been acting up regularly even with her meds. With me and my problems, that's enough to give anyone an ulcer! Surprised I don't have one, or maybe I do, who knows, all I do know is it is a lot to deal with, but with the help of each other family, friends, and other sources we will get through it all.
So I leave you with love & hugs no matter where you are in your journey.

Transplantation-related mortality and outcome
Of the 101 patients included in this study, 52 died during the follow-up period, and 49 are still alive at a median follow-up of 413 days (range, 60-1326 days), of these 35 (71%; 95% CI, 58%-84%) achieved and remained in complete or partial remission (Table 6). Disease progression or relapse occurred in 40 patients (40%; 95% CI, 30%-50%) at a median time of 76 days (range, 6-781 days) after RIC allo-SCT. Thirty-four deaths were directly attributed to disease progression or relapse. Twelve deaths were attributed to aGVHD or cGVHD, whereas 5 patients died of infections. The overall cumulative incidence of transplantation-related mortality (n = 18) was 18% (95% CI, 10%-25%) at a median of 138 days (range, 7-420 days) after RIC allo-SCT. However, it is noteworthy that among these 18 patients, 2 patients died from DLI-related GVHD following disease progression. In addition, among the 18 patients who died from TRM, most (n = 13; 72%) were older than 50 years. Only 5 patients (5%; 95% CI, 1%-9%) died of transplantation-related toxicity before day 100. Among patients who died of TRM, 11 were in the group of 46 patients who received the higher ATG dose of 10 mg/kg or 7.5 mg/kg, whereas 7 were in the group of 55 patients who received the lower ATG dose of 2.5 mg/kg (P = NS).

( Just a note to add: The van is no longer our problem, auto wrecker will deal with it now. Scratch that worry off the list!)

Karmanos Visit

On Monday April 18 I attended the Barbara Ann Karmanos Cancer Center in Detroit Michigan for a second opinion, as well as to inquire about enrolling in their SGN-35 Trial.

Once again the weather was miserable, SNOW!, of course it did I had an out of town appointment! Well, not so bad as it was only a fifteen minute drive door to door. Speaking of doors we had valet parking service at the entrance to Karmanos and it was included in my visit! Nice touch. Did not have to go looking for parking then walk forever to get to the Center.

Also, I was greeted in the lobby shortly after my arrival by Verda from International Services. She showed us around the main floor area and then showed us to the waiting room for Dr. Ramchandren. Shortly after sitting there one of the nurses came out and called my name. False alarm. She only had come out to tell me that Dr. Ramchandren was running about forty five minutes late and we had time to go for lunch if we wished.

So lunch it was! We found there was a small soup and sandwich shop, a Quiznos or Wendy's to choose from. Wendy's was the choice. After lunch we headed back to the waiting area, it was a long wait as well, my appointment was for 1pm and I did not get in to see the doctor until 3pm.

We were brought in to an exam room by the nurse and after a short wait Dr. Atassi entered the room. He is one of the Fellows there. After going over my history with him and answering a few questions he left the room to go over everything with Dr. Ramchandren, and about twenty minutes later the both came back into the room.

Radhakrishnan Ramchandren
Physician
Wayne State University - Karmanos Cancer Institute
Hematology-Oncology
4245 Karmanos Cancer Institute
540 E. Canfield
Detroit, Michigan 48201
rramcha@med.wayne.edu

Dr. Ramchandren was very thorough and went over everything and his opinion of things, he also answered my questions about the SGN-35 trail as well as Bendamustine + Rituxan as well. Due to my CIPN, (Chemo Induced Peripheral Neuropathy) I would not be considered for the trial as the main side effect of SGN-35 is Neuropathy. How did I miss that one! He also said he did not think that Bendamustine + Rituxan was for me and explained the reason why.

The visit lasted about two hours, and I also gave him my pathology slides and CD's of all my latest and early scans. He was going to go over the pathology and the CD's and he would also be speaking with Dr. Kanjeekal, my oncologist here. I am to call him on Friday at which time he will have had a chance to go over the pathology and the CD's and offer a better opinion of my case, which he considers very complex.

So, overall not the news I was hoping for,and a letdown, but not the end of the world either. I guess I will have to wait to speak to him again on Friday and for his written report at which time I will be able to make some decisions and move forward.

This whole process is taking a lot out of me mentally and physically. I really do need to get away from all of this once the dust settles and my plan of action is settled upon. Not sure where, how, when or even if I can afford it. We shall see.

So that is my journey for now, and I'll update again when I know more. So love and hugs to everyone no matter where you are in your journey.
Tim, xxx

Comfortably Numb.

Wednesday April 13 2011, the day it all became too much. The combination of a broken toilet and being told there's nothing more they can do with my vehicle and the cost to fix would be double what it is actually worth. That was it, enough, no more.

I just did not want to do it anymore,, I didn't want to have a broke down vehicle, I didn't want to have a broken toilet, I did not want to have to go to Detroit for my appointment or possible treatment. I did not want to have to worry if my CD of my PET scan from London would arrive on time. I did not want to have to worry about how I was going to pay for my appointment in the U.S. next week. I did not want to have cancer. At that moment in time I did not want to do any of it any more. Just make it go away!



I've been holding it all in and trying to shoulder it all for too long now, so enough is enough. I'm going to try to not worry about all these things and just let things fall where they may. That, however will be new territory for me and is going to be easier said than done, but I have to do this to get my mental health back in order.

Again, easier said than done, all you survivors and people still in the fight, caregivers and patients all know this too well. I'm treading into pretty dark territory here speaking about this and I'm not even sure it's the right thing to do by putting it out there. However it's done, I just said it, for that moment in time all hope was lost, and the emotional and physical pain of it all finally boiled over and I just did not want to do it anymore.

I grabbed the phone to call my social worker and she was not available, however someone got back to me, and talked me through a calm down phase, and actually Brenda putting on some calming music put me to sleep. When I awoke the rest of the day was pretty quiet, and it was an early night for me.

Why am I writing this one?, well it's because I've been about sharing my story since the beginning, I've always felt that sharing my story, my thoughts, my emotions would be a good thing if it even helped one person who was in this battle. That's is what this blog has been all about, with a few distractions along the way.

It's hard, and that is part of the "new normal", learning to deal with the hard part, I've had a great team with first and foremost my wife Brenda who has been there through every moment of this journey. Every single appointment she's been there to help me remember what was said, been there for every single treatment I've had. Seventeen cycles of chemotherapy and all the nasty things that has to offer. Every radiation appointment, all forty five of them, and every thing that comes with that. Every hospitalization, here and London where I spent three weeks during my stem cell transplant and the stresses of that.. Many scarf's, blankets, and hats were crocheted during that time, and thus a few people with new scarf's, and hats to keep them warm during the cold winters. Been there for all the drives down the 401 to London in every imaginable type of weather. Seems it was always winter and the worst weather when we/she had to make those trips.

Maybe it was Brenda who should have had the meltdown, lord knows she has a reason to. But she has held it all together but not without the problems she has had to go through with the accident, dealing with the insurance companies and lawyers, her own issues, and then me, trying to keep me together as well. Caregivers and the people on the front lines of the life of a cancer patient do not get the credit they deserve.

I know the government is working here to put together a program for caregivers and to support them when they need to take the time to deal with us ill patients, it's a program that has been too long in the making and they just need to get busy and dot the I's and cross the T's!

Am I fixed? does it all go back to normal now? Not a chance in hell, the problems are still there, the challenges are still there, the how to deal with it all is still there. It will continue to be a work in progress, there will be a whole process of  finding a new set of programs to deal with all of this. There will be the trip across the border this coming week to deal with, and the outcome of that to deal with as well. So there will be lots of trips to the supportive services area at the cancer center and programs at the Hospice as well. We are both taking advantages of the services offered through them.

There also is one of the most crucial parts of the team, the social workers. If you have access to them please take advantage of that. I think we at the Windsor Regional Cancer Center have some of the best workers in the province and I thank them for everything they do, and the challenges we put in front of them. By the way, who takes care of them!

Then there are the oncologists who strive every day to get us the best quality of life that they can. To seek out new and challenging treatments all the time for us. To explain to us, all the options available, and when those become few to offer, they point us in the right directions, to seek out second opinions, to offer their opinion on clinical trials that may be available to us, even if in a different city, province or country.

Then there are the nurse practitioners, and nurses of the systemic therapy departments, the technicians and nurses of the radiation department, and diagnostic imaging. All of those in the pathology departments who get us our blood work and biopsy results.

All of the front line staff at the various desks you have to get by to get to see your doctor or to guide you where to go. The volunteers from the Canadian Cancer Society, the yellow jackets as I refer to them, always there with a cheerful greeting and helping hand getting to the right area when you don't know where to go.

So you see, your never alone on this journey. Although you will feel that way at times, feel hopeless at times, you have a whole team out there, take advantage of it. Sometimes you will get so wrapped up in it all you will not think to use their services, but they are there, there for YOU! They may not always get back to you as quick as you think they should, we always want it right now, but they will get back to you. They have hundreds if not thousand of patients just like me or you, but never forget they are there for you.

So when you get to that point, the point a meltdown, pick up the phone, look next to you, but just do it, they are there for you. Look into programs and services that are available to you and your family by your cancer center, or the local hospice, they have great programs, and are a part of your team as well. There are many different services out there, just ask some one to help you find them. Most of these services are free of charge due to the donations and help of the community your in. So seek them out.

Cancer or serious illnesses are not easy to deal with and have heaps of challenges associated with them, you can not do it all by yourself. You will need to ask for help. There will always be someone, somewhere, that can help. Big Tim has found out he can not do it all, and does not have all the answers. I do know that help is there, and where and how to ask for it, the hard part is actually doing it. Actually saying your scared. Actually saying you don't want to do it anymore, and then, asking for help dealing with those emotions and issues.

Here is a link leading to a video of My team and what they do at the Windsor Regional Cancer Center.

My cancer center, My team.

Love and hugs to all no matter where you are in you journeys.
Tim,xxx

The stress and fustration of putting the puzzle that's me together!

Just what I need, more stress and frustration. I am in the process of gathering all my pathology slides, C/T scans, X-rays, PET scan etc. for my appointment next week in Detroit. You don't realize how frustrating and stressful that really is until you have to do it.

I have been on the phone all morning trying to get through to the various departments at the Hospitals that you have to go through to end up with the right person in the right department. I've had to deal with two different hospitals here in Windsor, and well as London,ON. not to mention back and forth with Detroit to see exactly what they need.

I just want to make sure they have everything they need for the consultation there next week. So CD from London is in the mail, hopefully it gets here by Friday!!, I have to go to Windsor Regional to get my Cd's of X-rays and scans from them, just a matter of filling out a paper and then a 5 min wait while the copy the X-rays and scans to CD, I'm leery, 5 min!, I'm getting all scans and X-rays back to December 2006! We'll see. Hotel Dieu Grace has told me they will call me when they have my pathology slides ready for pick up. I also am waiting for my oncologist to get back to me with the exact SGN-35 clinical trial she is referring to as there are a couple of them currently enrolling at Karmanos.

Now I just need to hear back from Detroit as to if they just need my latest pathology slide or back to the beginning. It was my understanding from a discussion earlier today they wanted back to the beginning, but I called back again to as why we need all those, and was told she would speak with the nurse of the Dr. I am seeing there and get back to me. That has not happened yet.

There is were the frustration and stress comes in, will I be able to get everything on time for the appointment, and if not, will  I have to go back for an additional appointment when I get everything together. This is what happens when you get a quick appointment date, rush, rush, double rush!! Ah, the puzzle that is me.

UPDATE

Just to update everyone on what has transpired the past couple days. As you know I had started the process to get a second opinion at Karmanos in Detroit. They had received my medical records yesterday. Today I got a call from Verda at the International Services desk and I now have an appointment with Radhakrishnan Ramchandren, M.D. Hematology Oncology.

I have also received a Health History Questionnaire and have filled it out in order to save time at the appointment on the 18th. I now believe I have completed everything necessary to make this appointment as smooth as possible. I also have called my Oncologist here to let her know what is transpiring and keep her up do date. I wanted to ask about my Diagnostic Imaging disks to take with me, and also how to go about getting the pathology slides, as I believe they will want to see them, however good old chemo brain kicked in and I forgot! Oh well I'll have to remember to do it on Monday.

So this will take care of one of the options I am looking at. It's been a very stressful past couple weeks and I will be glad to get this step behind me and move forward. My Ativan stock is running thin! I have also been putting together all my records and notes that I have here. I've been documenting since this all began in 2006, so it's been interesting going through all my books and reading some of the notes.

Begining the next step of the Journey.

The border markers inside the Windsor Detroit Tunnel

As you know I have been struggling with the next move of my journey. I have carefully weighed the options in front of me, and have decided to move forward with the decision of getting a second opinion. I have contacted the people at the Karmanos Cancer Institute in Detroit, Mi. USA.

I have spoke with Verta at International Services at Karmanos, a very pleasant lady and she is helping me in getting my medical records transferred from Windsor to Detroit. She has sent me the release forms necessary to start the process. I have filled them out, faxed them, and confirmed with Verta that she has indeed received them.

The next step in the process is that she is forwarding them to the necessary department, which will have the records transferred to a physician/oncologist for review.Then I will get an appointment to see the Dr. there at which point he/she would examine me and then provide a report on his/her findings.

Now comes the question some will ask and that is , is this covered by OHIP (Ontario Hospital Insurance Plan) the government funded medical coverage here in Canada/Ontario. The answer to that is No. No they do not cover appointments for a second opinion, so all costs associated with this will be out of pocket. Just one more expense that we really can't afford, but this is a matter of life or death and the cost and having to pay it is not up for debate.

The cost for the second opinion includes a review of my medical records from 2006 to present, an exam, and the report of the physician doing it. From there it is my decision based on the Dr's report from Karmanos,  and my oncologist here in Windsor, what I do next. It is my hope that between the two opinions I can make a firm single decision on how to proceed. Watch and wait is a pretty much a dead option according to Dr's I've heard interviewed at the 2010 ASH conference in Orlando back in December.

Breakthroughs in Lymphoma from Patient Power® on Vimeo.

 Above is a video from the conference with Dr. Anas Younes ,an oncologist, lymphoma expert, and a Professor of Medicine at M. D. Anderson Cancer Center in Houston, TX. describing the breakthroughs for Hodgkin's and non-Hodgkin's lymphomas, and also about the pending death of the watch and wait school of thinking. Great news for us with recurrent/chronic disease!

Dr. Younes speaks of both of the newest treatment options,which I mentioned in my last blog post, Bendamustine + Rituxan and also SGN-35. I am very interested in the SGN-35 option, and am hopeful of getting in on the clinical trial of this at Karmanos. Very exciting indeed, however I'm still not 100% decided as yet and not hinging all bets on one option or another. This is just the way I am leaning at this moment in time. That could change an hour from now!

I have some amazing friends out there that have offered many words of hope and have enlightened me on information on all the options I am looking at. To all my U.S. friends, you guys rock! thank you for all the info you have helped me with so far. Like I just said though, I have not made a 100% commitment to any one choice just yet, other than I will be proceeding with the second opinion.

This is the latest for now, so I leave you all with love and hugs no matter where you are in your journey.

Tim. xxx