Todd's Journey

It is with great sadness that I write this final update; Todd passed away early this morning. He passed peacefully, in our home with his babies.

While it has been a difficult journey and one that ended far sooner that it should have, Todd and I had an amazing life together filled with experiences and cherished memories that few get to have. In our final moments together he told me that he had no regrets, but it was his time.

Though my heart aches, Todd is finally at peace and he will no longer be in pain.

Thank you all for your love, support, thoughts and prayers.

Jamie

Just a quick update to let everyone know that Todd is home. He is comfortable and sleeping while being cared for by the ever attentive Nurse Greta.

Jamie

It was little more than a year ago when Todd and I found out that he had cancer. This was the start of a long, undulating roller coaster ride filled with ups and downs, highs and lows, both physical and mental. Throughout this journey, Todd has had to fight every step of the way. He has overcome countless setbacks and obstacles, and he has done so with the strength and tenacity that we all love him for.

Unfortunately we have been given the news that Todd's journey is coming to an end. There is no more that can be done. For those of you who are sharing Todd's journey and fighting your own battle, do not despair. Everyone's journey is different; while Todd's may be ending sooner than we had hoped, that does not mean yours will.

Todd is currently at the Winchester District Memorial Hospital being cared for. We are working with the hospital to get Todd comfortable enough to return home where he can cuddle his babies (Greta, Boba and Brand) and we can spend more time together.

We will be making arrangements for friends and family to visit Todd at home, and will be reaching out with details soon.

Thank you everyone for your thoughts, prayers and support now and throughout this journey.

Jamie

Yesterday Todd was transferred to the Ottawa General Hospital for the day. There he met with his Radiation Oncologist to go over his treatment plan and get prepared for treatment (including getting some new tattoos; a few little dots to help with alignment). In the afternoon he received his first dose of radiation. Todd was then transferred back to the Winchester Hospital to rest and recuperate. It was a busy day, and while some parts of it were a bit uncomfortable, Todd remains in good spirits.

Todd will now rest at the Winchester Hospital; his new pain management plan has helped with his comfort and he has gotten his appetite back. Next week he will return to the General for his second dose of treatment, and they will also decide if further treatment is necessary at that point.

Once the cancer has been 'zapped' - as one of the radio-oncologists said - and dealt with, we can then move on to rebuilding the strength in Todd's hip and leg and hopefully get him back home! The cats miss him very much (apparently I am not quite as liberal with the treats as Todd is).

Jamie

Hello everyone,

I know many of you have been asking about Todd as it has been a while since his last post. In that post you may recall that Todd described his challenges with increasing pain in his upper leg/backside and a reduction in his mobility.

We now know the cause of this pain: cancer was detected in Todd's left hip bone. This is what is causing him so much pain.

The good news is that the doctors have implemented a plan to control Todd's pain and to treat the cancer. Todd will be meeting with the radiology oncologists at the Ottawa Hospital in the coming days to prepare for radiation therapy. The doctors have explained that this type of cancer responds well to radiation treatment, so the prognosis is good for a return to being cancer free.

Thank you for all your love and support,

Jamie

You have heard me talk about "collateral" damage a person with cancer takes on during some chemotherapy and immunotherapy treatment. These are known risks prior to starting cancer treatment. Fortunately a majority do not experience significant side effects that require the cessation of treatment, however a small number of people (including me) do experience some unfortunate side effects. I refer to those as collateral damage, because the risk of not doing any treatment is far greater than potential side effects that may arise.

However, the oncologist do look at what the side effects are doing and decide on whether to continue with treatment.

In my case, as you already know, the immunotherapy was clearly causing damage to my kidneys. While that clearly is negative news, there is some positive you can take from it.

I spoke today to my medical oncologist. He was very, very pleased with my scan results. He said they could not have been any better. He also explained to me that my own immune system became very, very active from the immunotherapy. This is primarily why the kidney issues arose. So, they are trying to shut down the immunotherapy effects to allow my kidneys to heal again. While I was unable to get out this week for my bloodwork, he did look at my last bloodwork, and said my creatinine level was not alarming to him, and in fact was close to where I should be for a man who is my age, and has bladder cancer. He confirmed that I am close to being at baseline with my creatinine levels so will continue to slowly get me off the steriods.

This brings me to my leg issue. The oncologist also suggested that it may be the immunotherapy that has/is causing the leg pain. It is a known risk that immunotherapy (in a very small percentage of people) will experience issues with one or more of your invertable discs (the cushion between each vertabra) causing it become inflammed and bulge, or squeeze against the sciatica nerve.

Just as I would have probably felt the pain from that kind of event, they had started me on very high dose steroids to stop the immunotherapy. With the high dose of steroids I was on, I would have most likely not felt any pain at that point, as the steroids would have masked it.

As I went along lowering the steroid dose weekly, eventually the steroid effect would not help, and I started to feel the pain in my leg quite significantly.

It does stand to reason since my pain is most evident in the morning (when the steroids from the day before have worn off) and the pain returns after dinner as the steroids begin to wear off.

After dinner, I now again need help bathing, getting around, walking, sitting, getting dressed as the pain increases all night.

Thankfully we will be trying an extended release hydromorphine pain killer that will provide a more constant release of hydromorphine over a 24 hour period, rather than just trying every 6 hours to lower the pain. This may also help with the extreme drowsiness I experience from the hydromorphine.

So yes, it's been a return to the days of last September, October and November where my leg had atrophied and I was not able to move around as much. The difference this time is the pain is significantly higher than last year. (Probably due to pressure on the sciatica)

So what's the silver lining in all of this? Well, according to my oncologist, when immunotherapy treatment has shown to cause my own immune system to become so active (which it did) I have a much higher chance that the cancer will remain dormant for a longer period of time (and in rare cases) not come back.

That IS a silver lining. And they are working on my leg issue. Just playing the wait game for an MRI so they can confirm what is going on, and then treat it effectively.

On a final note, in the last week I have been told of four friends or friend's relatives who have been diagnosed with or affected by cancer.

As a cancer victim myself, I have always been drawn to statistics on survival rate, recurrence rates, etc. I now always tell my friends now that what's important when looking at those stats is to not focus on the negative outings (which are often quite higher) than the positive outcomes.

For example, I was diagosed with Stage 4, high grade, muscle invasive, metasticized bladder cancer. The 5 year survival rate is 39%. That means that 61% of people in my position will not survive more than 5 years without treatment. Instead of focusing on the 61%, I look at the 39% I could very well be a part of. The same goes for all cancer stats. Just because you are likely to be in the larger percentage group, doesn't mean you will be. You could very well be one of those people who do beat this dreaded disease. Those people exist. And are part of those very statistics you are looking at. :o)

Going through this Cancer journey has taught me a lot about myself, my disease, my tolerences and my mental health.

To say I never get down or frustrated would be an absolute untruth. As Jamie has often noted with me, I put on a different face when talking to my Doctors or Friends about certain issues, than I do when talking openly with Jamie or when I am not in the eye of others. I tend to minimize the pain I have, or make excuses as to why I am feeling a certain way, and it leaves my Doctors a little bit out of the loop. I know it's not good to be that way, but it is who I am.

As for you who have been following my blog (thank you) you will know that I am really struggling with leg pain and mobility issues. For the last little while we have been trying to work on pain management, which is very much a trial and error kind of approach. Balancing the need for pain medication, while not overdoing it is tricky.

Tonight, for the 2nd night in a row, the strength in my leg is very weak. If I put any pressure on it, the wrong way, it gives out. I am walking around with the use of a walker, and walking like at 90 year old man. It's embarassing, it's depressing for me, and it sets me back mentally by months.

Having fought back my bladder cancer to the point where I am cancer free, but to be faced with such immobility and pain now is just sad. The doctors don't yet know what has happened to my leg. We are waiting to have an MRI, and for the results of the X-Ray I went for last week. But it does seem to be worse every day.

I can't go anywhere anymore because longer distance drives just kill my leg, and I can barely walk even short distances. I have had three instances in the last two weeks where my leg gave out on me.

I hope one of the excellent doctors I have will finally figure it out for me, and get me on some treatment for it.

But yes, the face I put on for you, my friends, my doctors, my family is not always a truthful reflection on what I am going through.

We have been trying different approaches to my pain management in terms of my leg and sciatica. As mentioned, Dr. Morash is going to send me for an MRI just to see if there is anything specific around my piriformis muscle or with my lower back that may be impeding upon my sciatica nerve.

The only real way to resolve this issue is through movement of that muscle and rest at the same time. This was just not possible with the level of pain I was having with my leg.

We are now taking the approach of keeping on top of the pain by taking a pain killer every 4 hours, like clockwork, whether I need it or not, just to maintain a baseline of pain control.

This does seem to help a lot, (not so much overnight and first thing in the morning) but it is much more controlled during the day with less flareups and more relief.

The drawback to the pain management working is it causes me to be very drowsy during the day now. I nap almost every couple of hours for a half hour or so, but even that helps me a lot. Given my lack of sleep at night sometimes, I do feel like I am catching up on some sleep issues.

The pain in the muscle could still be a side effect of the immunotherapy that hasn't quite stopped yet. Until we get back the results of the MRI and X-Ray of that area, we don't yet have a good idea of what is going on there, and so it's difficult to start treatment without risking causing further problems.

But for now, it's back to napping for me. Just wanted to keep you all updated.

Thanks again for keeping in touch with me. It's always so good to hear from everyone. I could not have beat this major battle in my life without all of your support, prayers and wishes.