My husband's journey with cancer started on Sept. 30, 2005. Sadly, he passed away Monday, July 11, 2011. He beat the odds many times, and was an inspiration to anyone who met him. As many people have stated "we didn't order this, can I send it back?" - but of course, we can't. This is our story. Tales of ups and downs, good days and bad. It is mostly from a caregiver perspective and experience. We truly feel we walked the journey together....and alone.
Monday, July 28, 2008
radiation oncologist
This Dr. had a quick look at the CT scan from last week and says it looks like he has responded well to the chemo treatment. The radiologist report says they have no CT scan to compare it to - a bit confusing when one was done April 10. We will have a technician do a comparison report before we see Dr. Ahmad (the regular oncologist) next week. It might have to do with the fact that the scans were done at different hospitals. Oh well, at least this doctor had a computer and could look at the scans - he wouldn't say much since he is not a technician, but did mention that it looked like at least one of the spots had disappeared and there is now scar tissue in its place. He was sure to tell us there are still multiple nodules, but some spots were smaller or seemed to not be there anymore.
We should hear from Winnipeg by Wednesday this week and then have an idea of the process from here - at least for now.
We have a busy couple of weeks ahead - our nephew and family, Chris, Raegan, Karly, Danielle and Brandon are coming to visit this weekend, and then my friend from Ohio is up here from the 4 - 8th, and we will get some visiting with friends from Regina who are coming up that same week. We are so lucky to have so much support from everyone!
I will post again once we hear from Winnipeg.
TTFN (if you don't know what that means, check out a Winnie the Pooh story...:)
Sunday, July 27, 2008
Another great day! Thoughts about hope.
YOU STILL HAVE HOPE
If you can look at the sunset and smile, then you still have hope.
If you can find the beauty in the colours of a small flower, then you still have hope.
If you can find the pleasure in the movement of a butterfly, then you still have hope.
If the smile of a child can still warm your heart, then you still have hope.
If you can see the good in other people, then you still have hope.
If the rain breaking on a roof top can still lull you to sleep, then you still have hope.
If the sight of a rainbow still makes you stop and wonder, then you still have hope.
If the soft fur of a favoured pet still feels pleasant under your fingertips, then you still have hope.
If you meet new people with a trace of excitement and optimism, then you still have hope.
If you give people the benefit of a doubt, then you still have hope.
If you still offer your hand in friendship to others that have touched your life,
then you still have hope.
If receiving an unexpected card or letter still brings a pleasant surprise, then you still have hope.
If the suffering of others still fills you with pain and frustration, then you still have hope.
If you refuse to let a friendship die, or accept that it must end, then you still have hope.
If you look forward to a time or place of quiet or reflection, then you still have hope.
If you still buy the ornaments, put up the Christmas tree or cook the turkey, then you still have hope.
If you still watch love stories or want the endings to be happy, then you still have hope.
If you can look to the past and smile, then you still have hope.
If, when faced with the bad, when told everything is futile, you can still look up and end the conversation with "yeah, but..." then you still have hope.
Hope is such a marvelous thing.
It bends, it twists, it sometimes hides, but rarely does it break.
It sustains us when nothing else can.
It gives us reason to continue and courage to move ahead, when we tell ourselves we'd rather give in.
Hope puts a smile on our face when the heart cannot manage.
Hope puts our feet on the path when our eyes cannot see it.
Hope moves us to act when our souls are confused of the direction.
Hope is a wonderful thing, something to be cherished and nurtured, and something that will refresh us in return.
And it can be found in each of us, and it can bring light into the darkest of places.
NEVER LOOSE HOPE!!!
Saturday, July 26, 2008
What are you thankful for?....and ramblings...
Yesterday I was very thankful that I was able to golf with Jamie before he headed home. That lead to being thankful for having a job that allowed me to take the time off on Friday to golf and then I go in to work and finish up what I needed to do. After days of dodging thunderstorms I was very thankful for a sunny and warm day to golf! One of the most wonderful things on Friday was that when Jamie and I got home from golf -Callum had lunch ready! It was such a nice surprise. Today has been no less marvelous - a warm sunny morning greeted us as we enjoyed drinking coffee and reading the paper while sitting on our deck. The sky has been nearly cloudless all day. Callum sounds like his regular old self today and joined me in a mega shopping ordeal at Costco and Sobeys. He even washed my car! He is planning one of his famous cooking days tomorrow - big batches of chili, chicken gumbo soup and spaghetti sauce to freeze. It is so wonderful to see him feel better. We see the radiation oncologist about the whole brain radiation treatment on Monday, July 28 and by Wed. the 30th we should find out if he is accepted for gamma knife surgery and where he is on the priority list for it.
I was saddened on Friday to hear of the death of Randy Pausch - the guy who is now famous for his "Last Lecture". He was 47 and passed away from complications of pancreatic cancer. He had a fabulous attitude and I believe his legacy will teach many people about how to live with, not die from, cancer. If you haven't checked him out yet, here is his home page: http://download.srv.cs.cmu.edu/~pausch/ . There is a link there to both the Last Lecture and his update page if you are interested in his story. I have bought his book and found it quite interesting - it is a quick easy read and really is mostly about some of life's lessons, and not focused on cancer.
I have done a bit of browsing on Lance Armstrong's LiveStrong website and ordered the Survivorship Notebook for people with cancer. It is quite an interesting book and full of both practical and support information. It is almost like a wedding or baby album as there are places to put your immediate family information, along with the health and treatment information, and a place to list important documents and where they are kept. I think this will be a great historical book for us as we will be able to document the type of cancer and the treatments given. Given the difficulty in accessing health information many years after the fact I am hoping this may be helpful to our family members in the future.
It is kind of funny that when I first read Lance Armstrong's book I felt he was really an arrogant and pompous kind of guy. But I now find wisdom in some of his words. Just the other night I was asking for the strength I would need to get through the months ahead. The next day the notebook arrived and in the forward he says:
"If there is one thing cancer has taught me, it's that we are stronger than we think. When times get tough, we find a way through. When we think we've had all we can take, we find the will to go on. When you believe in your strength and know how to tap into it, you LIVE STRONG. It's about trusting that your strength will be there for you to fight cancer, to race, to love, to take risks, to dream."
I then realized that he is right - the strength will be there. I do not worry about that anymore. Whatever I need will be there. Sometimes it will be a friend who calls or emails; it might be some alone time in the sauna; it might be coffee on the deck; it might be a scoop of ice cream; whatever I need.....will be there. And everyday I will be thankful for that.
Til next time...
Tuesday, July 22, 2008
The Dark Knight is awesome!
Saturday, July 19, 2008
quick note
Tuesday, July 15, 2008
oncologist visit today...
- Blood clot - not much they can do. He can take one ibuprofen in the morning and 2 at night to try and take inflammation down. He can't take aspirin as it might cause bleeding. He can put hot compresses on his arm and chest, so he will do this and it looks like the infrared sauna will be OK so he will do that, too. Those things might break up the clot and get it absorbed into his body. He is still at risk of a clot breaking off and going to his lung but this is the best we can do right now.
- Brain mets - this oncologist has suggested we get those looked after as soon as possible, then if Callum needs the blood thinners in the future he can take them. She is following up on the referral to the radiation oncologist in Saskatoon to start whole brain radiation - even before the gamma knife surgery.
- This means that chemo will be temporarily suspended because if he gets another PICC line inserted he risks a blood clot in his right arm. He doesn't want that. The good news is she said the lesions in his lungs are quite small so interrupting chemo right now likely won't make much difference. Callum did have a choice on whether or not to suspend treatment and that is what he decided. It is just way too risky to have clots in both arms!
- The sore neck is due to the clots - there is not much draining happening from the veins in the head so the blood is backing up a bit in the neck area. Hopefully this starts to dissipate as the clot breaks up on its own. He is taking Tylenol 3's for the pain and feeling much better now!
- The referral to Winnipeg will be sent on Wed - likely will be another 2 weeks before we hear from their clinic.
I think I have it all - this is very complicated at this point - lots of things to watch for with medications and treatments. He is in much better spirits since starting to take the T-3's. He was afraid to take anything until he saw the Dr today. I told him he will likely end up in a medical journal -especially after he is cured after all this!!
Anyway...time to get ready for be. It has been a long few days. I have started to rely more on being positive - fear won't rule! I have vowed to spend at least one week not looking anything up on the internet - I think I have borrowed worry needlessly - a precious waste of time and energy. Onward and upward!
Monday, July 14, 2008
the waiting continues...
Sunday, July 13, 2008
here we go again...
Well, it will be a quiet day. I should have some time to do a bit more organizing in the house and get some laundry done. In the middle of sitting and waiting for the bad things to happen, life goes on. I think we will have to have our hospital bags ready all the time - I had a hell of a time finding something to wear yesterday - the end of the week and laundry needed to be done. It is almost like getting ready to have a baby - you may have to go to the hospital any minute so make sure you have clean underwear handy!!!
Enough blabbering....time to get to work.
Saturday, July 12, 2008
why is there always more???
I just wish he could have one week of feeling really well. It has been such a long road already, with few really, really good days since early April. He is about 30% done the chemo treatment, so that is good to think about. I am sure that these other things will go away eventually....there has to be better days ahead!
So...back to the earlier post....why do we stay positive? Because we need to enjoy every minute that we feel good and on top of the world. If we borrow too much worry then we will be worried all the time. We will celebrate the little victories, and gain strength for the tougher days.
I have much more I can say, but I am tired and need a break from this.
To be continued.......
Friday, July 11, 2008
I think I have Whiplash!!! What a rollercoaster ride....
So, we waited to hear about the neurosurgeon appointment and at 9:15 Monday morning we got the call for the 1:30 appointment on Tuesday (July 8) afternoon. Now, we have had many scary moments over the last 3 years, but this was the scariest. We were both very hopeful, but also very prepared to hear that there was nothing he could do for Cal. However, he is a great surgeon, and after doing the regular neurological motor tests he recommended gamma knife surgery – much less invasive and has shown to be as successful, or nearly as successful as open surgery. It is day surgery, so recovery is just a few days. There are only 3 places in Canada that do it – and Winnipeg is the closest for us. We will likely combine a bit of a vacation with the surgery since we are so close to family there. We couldn’t have been happier. He did suggest whole brain radiation after the gamma knife surgery, to be sure we get rid of all cancer cells. He also said if the cancer comes back in the brain they would be looking at doing open surgery. So…we are not at the last treatment option! Some of the best information on the gamma knife is on the Winnipeg Health Region website – the neurosurgery section. http://www.wrha.mb.ca/prog/surgery/gamma_knife/index.php
Yes – it has been quite a few weeks. My vocabulary increases every day. I learn about different medical procedures. We are so lucky to have available to us so many options.
I think many of you are wondering why we are so upbeat – how do we stay positive? Hope. We have to continue to have hope. I recently read Lance Armstrong’s book – “It’s Not about the Bike”. In it he questions which is the stronger emotion – fear or hope? It is so reassuring to know that it is normal to have both feelings – even though they are in conflict. If you try to be too real, and only look at the average statistics, you get full of fear. That is just not positive. However, if you only focus on hope, and cure, and all the best of things, you can be deluding yourself. It is important to understand the gravity of the situation, but you also must remain positive and hopeful. Lance Armstrong’s doctor told him (after he was cured) that he was in the top 3% worst cases he had ever seen. According to the stats, he is not alive. I have come to think of all the instances where people beat the odds, for good and for bad. There are people who win lotteries, sink the $1,000,000 basket, score the $1,000,000 goal in hockey, get hit by lightening, don’t get hit by lightening, get pregnant when they shouldn’t, have very sick preemie babies survive, win lotto homes, miss their flight only to find out later the plane crashed. People beat the odds every day – why shouldn’t Cal? It really can’t be out of reach – we have to keep believing that he will beat this. He doesn’t even have to beat 1 in 14,000,000 like 6-49. He only needs to beat 1 in 95. I also have recently read “The Last Lecture” about the last lecture Randy Pausch gave at Carnegie Mellom University. He had been recently diagnosed with terminal pancreatic cancer. Someone asked him what he wanted on his tombstone after he died. He said “Randy Pausch: He Lived Thirty Years After a Terminal Diagnosis”. I think Callum’s will say he live 40 years longer than his prognosis!!
I don’t know if I can adequately describe how super strong Callum is. I marvel at how he takes everything in stride. I told him today that I wasn’t sure if I could do what he is doing. He gets hooked up and pumped full of toxic chemicals (we now have a “hazardous chemical clean up kit” at home in case the infusion bottle has leaks) to kill bad, but also good, cells in his body. Then he deals with fatigue, nausea and hiccups for a few days. His hair is pretty much gone. He sits down to a meal and takes anywhere from 2 – 6 pills, from anti-nausea to vitamins. It is quite a busy few days after chemo! He is such a trooper – hasn’t yet missed a meal! He is trying so hard to do all the right things – no one can fight harder!
I have learned that I really gain my strength from him. He was down for a few days – I could see so much worry on his face. I wanted so much to fix it for him. I still want to fix it for him. This is one of the first times in my life that I am helpless to change an outcome. I can’t nag, counsel, listen, talk, shop, buy, or just do anything. Except, of course, hope and believe. I wish so much that I could take the pain away from him. Life is just not fair!!
I have many days where I suddenly have tears. I try to allow myself some sadness, and then move quickly to the positive and believing it will get better.
I am sure I have forgotten a few things…but I will write again. A bit sooner this time – we can’t be having any more bad news to delay the blog!
So…why do we stay so positive? It is easier. It is necessary. It keeps us focussed. It helps us enjoy each day – even if there are only a few moments to enjoy. We know the outcome doesn’t look great, but Lance Armstrong beat the odds – why not Callum. When waiting at a follow up appointment, Lance Armstrong made up an acronym for cancer:
Courage, Attitude, Never give up, Curability, Enlightenment and Remembrance of my fellow patients. Pretty neat! And his comment on which is stronger – fear or hope? He said:”Something told me that fear should never fully rule the heart, and I decided not to be afraid”. We absolutely agree with this statement…hope is where it is at!