quick note

Just a quick note to say things are fine. The swelling in Callum's arm is down a bit and he is feeling a wee bit better. His brother Alan and our son Jamie are here this weekend. Callum isn't up to golfing this weekend, but Alan, Jamie and I got out for 15 holes today - then thunder, lightening, hail and rain chased us from the course. I haven't swung a club since May 25 so it was quite a sight! I did manage 2 pars on the back nine before we quit - I won't talk about what happened on the front! We have an appointment with the radiation oncologist on July 28 and are hoping we hear from Winnipeg by then. We are definitely in a holding pattern for now. We hope to get out golfing tomorrow after the British Open - go Greg Norman!!! As for me, there have been moments here and there, and I am finding myself getting a bit tired at times, but for the most part I am good and enjoying whatever the day has offer - it is the only way!

oncologist visit today...

We saw Dr. Arnold today - the oncologist who phoned Sun. morning to tell us not to take the blood thinners. I will try doing this in point form to see if it can be clear - it is much like a puzzle 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!

the waiting continues...

Well, we talked with the nurse today and the best we can do to see someone is Tuesday afternoon. Callum is no better, but I suppose no worse. The swelling in is arm is somewhat better, but it is still obviously swollen. Whatever is happening in his neck - which I am guessing is related to the swelling - is making it hurt to swallow so he has cut back a bit on eating and drinking. He ate a pretty good supper though, so I feel much better about that. It was a bit frustrating to not get in to see someone today. The nurse just said he could go see his family Dr for something for pain relief for his neck, and to go to the ER if he got worse. She suggested alternating hot and cold on the neck. The problem is that the neck issue is no muscle related! And he has enough pain meds here to do him for a long time. He has taken some Tylenol 3's today and that has given him a bit of comfort, but then he sleeps. So...no answers today. Hopefully tomorrow. And on we go......

here we go again...

We were hoping for some kind of a normal day. Not to be. We started the day with phone call from the on call oncologist. She said Callum had to quit taking the blood thinners. She said he is a specialized case and between a rock and a hard place. If he takes the blood thinners the brain may bleed again and that will kill him. If he doesn't take the blood thinners some could break off and go to his lung and kill him. She said he should just hang tight for today and they will figure out what to do with him. Then I had my first cup of coffee. Great start to the day! We are both quite scared - no doubt about it. We are really just wanting something normal. This past month has been quite a bumpy ride. Just when we think we have the kinks worked out, more comes along. I don't know how much more Callum can take - he is strong but this situation has him quite frustrated. On the positive side, he did a good job of keeping his arm elevated last night and some of the swelling went down. We just hope he can keep that under control until they come up with a new treatment plan for this. His regular oncologist is still away so we are dealing with the ones covering for him. At least it wasn't the other guy who had very little positive to say.

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.

why is there always more???

Well, just when we thought we had enough to worry about...today Callum woke up with a very swollen left arm. I always check his medication and health sheets when unusual things happen so that we can see if they are side effects of any medications or treatment. In the PICC line info it states that rarely there can be swelling of the arm, and to call the Dr. immediately. His arm was swollen and purple - like something was constricting the blood flow. He was going to have a shower and I was having some breakfast and then I was going to shower and we were going to head over to the emergency room. Well, Callum came out and said it was getting worse and we had to go now. Well, I hadn't had more than a cup or so of coffee - and anyway who has seen me in the morning knows how important that is to me! Anyway, I threw on some clothes, grabbed a travel mug and we headed to the hospital. We got to emerg and some guy outside said to Callum I wouldn't go in there - it will take 4 hours before they see you!" We kind of thought things would happen a bit faster for him, and by the time I parked the car and got back to emerg he had been processed, registered and was on his way to a bed in the ER. The took his blood pressure and checked for all signs in circulation in his body. Everything seemed to be good, and his lungs were clear (we were happy to hear that!). They took 4 vials of blood and figured he had a DVT (here is my vocabulary lesson for the day) - a deep vein thrombosis - to you and me, that means "blood clot". So....they ordered an ultrasound, and we headed upstairs to the CT/ radiology dept. And the Dr was right - it was a blood clot. Now, I don't know what you think of when you hear blood clot, but I tend to think a larger drop of blood - maybe the size of a dime or nickel or quarter, but some kind of little spot just sitting in the vein. Well, did you know that you can have a blood clot from your shoulder all the way to nearly your wrist? The Dr. referred to it as "big" and "extensive". Wow! I couldn't believe it. Now we know why he was purply from his neck on down to his wrist. He got a shot of heparin and a dose of warfarin in the hospital. We came home with 7 more heparin shots and a prescription of warfarin. I think Cal has decided to give himself the heparin - I don't think he likes the idea of me coming at him with a needle! The figure the clot was likely caused by the PICC line - however one of the side effects of Avastin is blood clots, so who knows. They removed the PICC line and they will have to put another one in before his next chemo on the 23rd. The Dr was good and he checked with radiologists and the oncologists on call before proceeding with treatment. We were there a total of 5 1/2 hours. Neither of thought that is how we would spend our Saturday, but I guess that is all part of the deal. So, now we have even more to worry about - or at least think about. The issue with the warfarin is that until they find the correct dose, he can be prone to bleeding when he shouldn't - so we should watch for that. The big concern for me about this is that the MRI had already shown some bleeding around one of the tumours in the brain, so I hope that doesn't start. The other concern is that if part of the clot breaks off it will go to the lung and cause some serious issues - it could also head to the heart and that would cause some issues. The Dr considers him at high risk for this in the next few days. So, we have to watch for shortness of breath, chest pain, leg pain, and neurological symptoms - headache, nausea, vomiting. At least he is pretty much past the chemo side effects for now, so we should know that is these happen it is due to the blood clots. It is quite scary as there is not much we can do except wait for the medication to take effect and keep his arm elevated as much as possible. It could take up to 7 days to get the correct warfarin dose. It must be pretty risky as we had the nurse, Dr and 2 pharmacists review what it does and the serious symptoms to look for.

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.......

Callum's new hairstyle!! Ain't He Cute!

Don't you just love his new sportin' hairdo!!

I think I have Whiplash!!! What a rollercoaster ride....

Well, it has been quite an interesting few weeks and quite a while since I have written, but I think most of you understand why it is that way. It was very disheartening for us to hear that the cancer has spread to Cal’s brain. Still quite unbelievable some days. We had many ups and downs since that news. We are feeling quite lucky that Cal picked up the flu a couple of weeks ago – even though it stole some of his good days. That is what led to the CT scan, followed by the MRI which basically confirms that the two spots are cancer. One is in the back at the cerebellum and the other is in the left frontal lobe. They are both small so that is good. Along this bumpy road was yet another fax referral that didn’t “make it” to the other end. Thank goodness I am getting better at insisting on things, as it was only through inquiring about the status of the referral that we found out it wasn’t received at the neurosurgeon’s office. It only made a difference of a few days, and that will likely really make little difference anyway. Now, Cal had his regular check in appointment with his oncologist in early July but his oncologist was away so we saw a replacement. Well, this guy was just weird. Just moved here from Ontario, is really a blood cancer guy – I suppose quite a good one, but not the best for us. After Cal’s regular oncologist, Dr. Ahmad, had said the spots on brain were probably operable, this other guy says he would be surprised if they did surgery, considering everything else going on for Cal and the fact that there are 2 spots on the brain, not one. The other thing we learned is that he has to quit taking Avastin as it has too much of a risk of stroke and death, and one tumour has already been bleeding a bit. So, we left that appointment feeling quite down. Cal was having some trouble breathing and with this news it just made us feel like we were losing the battle. We did start walking a bit that week, and then the weekend we spent following Dale Vallely playing golf in the Canadian Tour event in Saskatoon. We made it walking pretty much 18 holes of golf – 2 days in a row! We were both bagged on Sunday night, but it was such a great boost to Cal’s spirits. He didn’t think he could do it, but he made it through – with no real issues. He was starting to feel so much better. We now have an infrared sauna which is wonderful!! I used one when I was in Red Deer and feel in love them. There is a bit of research on using them as part of cancer treatment. The theory is that since the infrared rays heat you from the inside out (pretty much like the sun does when you are lying on the beach) that it helps slow down the growth of cancer cells since they don’t like heat. Some think that is why testicular cancer is so curable – the cells are closer to the body and therefore are in a warmer environment. Anyway, he has been using the sauna diligently and I think this helps, too. It is supposed to help both your cardiovascular and immune systems. Check it out at www.prohealthsauna.com.

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!