Back to reality.......

Well, here we are, back into reality. It was so nice to be away and not have to deal with life!  We left Ixtapa on Saturday and arrived home on Sunday. We had a few precious hours of sleep Saturday night so we are both quite tired. Callum has been very tired for a few days. We aren't sure if it is because he was relaxing, or if it was the heat, or the fact that he was bit by a great black wasp  www.pbase.com/crocodile/image/34100054

He certainly hasn't felt as good as he should given that it is nearly 3 weeks since his last chemo treatment. We were really looking forward to this extra week being so good for him - it has been quite disappointing that he is so tired and nauseous.

Today was a particularly hard day. This morning Callum went into work to tell his staff that his short term disability had run out and he is now on long term disability. I drove him to the office and stayed in his office to wait for him. It didn't take long to see why he loves it there so much. Before the meeting some of his staff popped in. There were smiles and laughs - I was able to see how much he enjoyed those relationships. And after the meeting - more proof. Within a few minutes there were no less than 6 people who had stopped in his office to say good bye, good luck and Merry Christmas. There were lots of thank you's, and I noticed a few tears, too. I really have never seen him in his "work world". We usually kept work and home fairly separate. I think it was a good thing I was there today. He came back from the meeting and I gave him a hug. In his office. Where people could see. He is not known for his public affection - I know it was very tough on him. Although I really have no idea what it must feel like for him. I am usually quite intuitive and empathetic - but this one is beyond anything I have encountered. I had a couple of tears, too. Reality sucks. It feels like another punch in the stomach to me.....imagine what it must be like for Callum.

The other dose of reality this week is the Toyota. It will be picked up on Saturday. We are turning it back in to Red Deer Toyota since it will be at least a year before Callum could get his driver's license reinstated.

Some people wonder how people fight cancer.  Fighting cancer is about so much more than fighting an abundance of abnormal cells ravaging your body. There are many ups and downs. Good test results. Bad test results. Hope. Fear. Hope. Hope. Sadness. Anger. Hope. Cancer strips you down - takes away so many things, one nibble at a time. And sometimes it is a great big giant bite. We must have hope. We must keep positive. But we still get punched in the gut and have to go on.  And we must deal in reality from time to time. Incurable. A very hard word to look at some times. Chemo until you can no longer tolerate side effect or the cancer grows again. Reality. Cancer messes with your mind. How does one deal with what is really happening and yet talk positively about the future? As Callum gets more and more tired I worry that this is about more than a wasp bite or heat.  And even if that is all that it is, I have a preview of what to expect in the coming months. And it hurts like hell. I get annoyed at the things I have to do when he is not well. But up until now he had enough good days to help out with many things. I am not sure when our days will change on a more permanent basis, but  it scares me when I realize that it likely will happen. I don't worry about me so much. I am more afraid of seeing my husband not able to do the things he loves to do, to not be able to do as much as he would like. To become more dependent. More sick. There it is again. Punched in the stomach. If I could wish for anything in the world it would be that he would get better.  

Please understand that I remain positive and hopeful - miracles happen everyday! But it isn't helpful to avoid the facts, as heartbreaking as they are.  Sometimes it is helpful to write about reality....get it out of my system so I can keep my strength to help us get through this....get the miracle......and life back to normal.

 "I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!"
Dr. Seuss 

A great day at sea!

We have had a wonderful couple of days in Ixtapa.

We watched the sunset on the beach last night. Callum and Ray went deep sea fishing and caught 2 little tuna, a 6 - 7 ft sail fish - and the best thing - a 180 lb, 9 ft long blue marlin! They brought home some marlin for supper - apparently not really tasty - but great fun catching it! Val and I had breakfast and floated in the pool until the guys got home. We headed out for some shopping and the guys relaxed. Callum has been quite tired the rest of the day - hopefully he picks up tomorrow. We are very sad that we have only 2 sleeps left before we head home. This trip has been therapeutic for me and has been a great vacation away from our

cancer life. It is nice to have some "normal" things in our life. I know Callum has been tired - and frustrated a bit that he can't do things like he did before. But he doesn't complain, takes a nap when needed, and just keeps going. He is amazing and I am so very happy he got his blue marlin!

Hola

Hola!

We have arrived safe and sound in Mexico and are enjoying my sister's hospitality. The routine here is wonderful - get up, have coffee and breakfast, jump in the pool, make lunch, and then relax. Callum has done pretty well although he says he is feeling good, but tired. We think it is likely the humidity. He got stung by a gigantic wasp yesterday so we were a bit nervous until he got up this morning and all is well. The wasp is known as the Great Black Wasp, or Sphlex Pennsylvanicus - if you want to look it up.
Last week we made arrangements to return the Avalon to Toyota. It looks like Callum will not have a driver's license for at least a year and we have a year left on the lease. We don't need 2 cars and will keep the newest one (since it is the hottest car in Saskatoon!). They will pick it up on Dec 6.
He was happy to hear that he could cut back on his blood pressure meds - cut by 1/2. His blood pressure was quite low when he was at the doctor last week so we hope that with it back to normal he might get some more energy and have no more dizzyness.
His chemo schedule now changes to Dec 3 and 17th this month. It works well as he should be feeling better in time for Christmas and will be 2 weeks past the last treatment before we head to Scotland.
He sees the oncologist again on Dec 2 and should have a CT scan around the middle of Dec. I think we are back to the "normal" schedule of chemo treatments!

That's it for now.............
TTFN
Lorna

Another busy month

Good day all! 

We have had quite a busy few weeks. Most of you know by now that we had good news earlier this month - the 2 brain lesions have shrunk and nothing new is showing up. So far it seems the disease is stabilized - all due to the perseverance and commitment to Callum.  He is still feeling some fatigue from treatment and doesn't recover quite so quick from chemo but he is doing pretty well. He had been lucky to keep away from mouth sores for so long but he is now on his second outbreak of them. they aren't as bad as he has had them in the past, but they are still quite annoying! 

The last week has had a couple of "downers".  We found out that Callum is pretty much out of his short term disability time and is now dealing with the paperwork to go on long term disability. It breaks my heart to see how disappointed he is at having to take a step back from his job. He has worked so hard for over 27 years to get to here - and he just loves it. Then we had a call from his oncologist last week to let him know that he shouldn't be driving since he has brain tumours. It is illegal and he really shouldn't have been driving since June. It will certainly make a change to our lives and I can't imagine what it is like to lose that independence. He never says much so I don't really know what he thinks about it. I think it is quite depressing to him - yet another thing he has to rely on me to do. Not that I mind, but I am sure he doesn't like to have to depend on me. If he was really, really sick then it would likely be easier to deal with. But he is usually quite well at least 1/2 the time so it really sucks right now! But, better to not drive than hurt someone if he should have a seizure - even though it is unlikely. 

I have taken a medical leave from work until the end of January. I find that I lack the ability to concentrate for any length of time and get easily overwhelmed and fatigued. I think I just need some rest to recharge! 

We are headed to Mexico this weekend to visit my sister for a week. We are so lucky to have family living in Mexico in the winter! Then off to Scotland in January to see our wonderful 90 year old Nana and all the other relatives! We are taking Jamie, Vanessa and Stuart so we are all excited for this wonder family holiday! It will be so much fun. 

We are going to be in Saskatoon for Christmas.  The chemo schedule has changed somewhat due to the Mexico trip.  Callum will have chemo on Dec 3 and 17 so should be feeling better by Christmas, and in good shape for Scotland. Both kids will be here along with Callum's brother and his family.  We haven't spent Christmas with them for many years so are looking forward to spending this holiday season with them. 

Callum should be having a CT scan in Dec to check his lungs, abdomen and pelvis, and likely an MRI again at the end of January or early February.  Sometime in February he will likely have an ultrasound on his arm to check the blood clot. He hasn't had any issues with it lately so we hope all is well enough to stop taking the blood thinner shots. 

Well, that is likely enough for now.  We continue to stay positive and look forward to hearing that there is no more cancer in Callum's body. 

Til next time...Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmache

TTFN.......

remember us?

I just checked the date of the last blog - 20 days ago!! Wow! It has been a very busy number of weeks. The daily trips for radiation continued until Oct 8.  My sister and brother in law came to visit for a few days. My brother and his family and Callum's brother and his family, along with Vanessa and Stuart joined us for Thanksgiving. We bought a MacBook and a treadmill. Jamie and Callum's brother Alan are here now for a visit. We booked a trip to Scotland. I wrote 2 grant proposals, prepared for a board meeting and attended the AGM and conference for our major funder. I had one day off in 2 weeks. I got glasses - yup - glasses!  Callum has had one more cycle of chemo. We had some "uncomfortable issues" with our cleaning service so we had to let them go. We hired a someone to clear our snow (thank goodness we don't have them yet!).  And, I am tired. Why do I always write when I am tired? I don't really know.  I have decided to take Monday off and have 2 days off in a row. Maybe a little "recharge of the batteries" to get ready for the next cycle of chemo. It seems that Callum is still having some side effects of the radiation as he has been quite tired - even until today. He didn't go to work until Thursday and spent only 1/2 day there. He was at work until about 3 on Friday but was quite tired the rest of the day. We sure hope he has more good days after this cycle coming up.  He still stays positive most of the time, but certainly has been quite frustrated with feeling so tired and not well for over a month now.  And he gets quite grumpy when frustrated......I have learned to bite my tongue a lot! It is kind of a new skill for me :) 

We are both still working at this point. We will see how the next couple of cycles of chemo go and see if it is getting time to look at cutting back at work and taking more time to be at home. I am sure Callum gets a little stir crazy when he is home alone so much. And he has been marvelous about cooking, but it seems that more often he gets nauseous when cooking so I may have to do a bit more of that. It has been wonderful that we haven't had daily trips to the cancer clinic. 

We just got our treadmill yesterday so haven't had a chance to really try it out. I am looking forward to getting back into some exercising and having it at home. No excuses now! 

And, now some words of wisdom:

Inner Strength

If you can start the day without caffeine or pep
pills,

If you can be cheerful, ignoring aches and pains,

If you can resist complaining and boring people
with your troubles,

If you can eat the same food everyday and be
grateful for it,

If you can understand when loved ones are too busy
to give you time,

If you can overlook when people take things out on
you when, through no fault of yours, something
goes wrong,

If you can take criticism and blame without
resentment,

If you can face the world without lies and deceit,

If you can conquer tension without medical help,

If you can relax without liquor,

If you can sleep without the aid of drugs,


THEN YOU ARE PROBABLY THE FAMILY DOG

TTFN

Lorna

Going....Going.....Gone.....again...........

Well, the radiation has done what we were told it would - Callum starting losing his hair this weekend. It is nearly gone again - just a couple of tufts and strands here and there. His hair had started growing back when he was off chemo, but it wasn't that long or thick this time, anyway. He said his head is getting sensitive - it will be a bit sensitive from now on. He is still quite tired although today he made a great Sunday breakfast. Alas, by the time it was done he was quite tired. Thank goodness he will rest when tired. He is getting quite tired of being tired. He seems a bit down today - feeling like he will never feel better than he does today. Only 3 more radiation treatments, thank goodness. Then a week off before chemo starts again. I never thought I would ever long for the regular routine of chemo....but I do. It is tiring just having to be at the Cancer Centre every day - and I don't even go with him every day. It just wears on you and provides a daily reminder of what is happening to his body. It will be nice to have a few days of not thinking about it.
We have had a quiet weekend which has been nice. I have been busier at work again so I am enjoying the time spent at home. Callum has been quite interested in cooking. He has spent many hours this past week reading cookbooks and finding delicious recipes to try. It is nice to see him interested and looking forward to doing something. He has decided we will do some kind of meal for Thanksgiving. It is something that is really important to him. We will both have a brother and family up here along with Vanessa and Stuart, so it will be a nice little family affair!
It will be so wonderful when he starts to feel better. There are people who want to visit and trips we want to take, but he just doesn't want to "go there" right now as he thinks he is just going to feel this crappy all the time. I just wish he would feel well enough to look forward to these things. It is hard for me because we are trying to balance so many schedules and we have to make plans soon, but he doesn't want to commit until he knows he will feel better. I just don't think we will ever have the guarantee about how he will feel 3 months down the road - this is one of those "leaps of faith" we will just have to take! It will all come together - I know it will.
Last week I picked up the packages for Canada Pension Disability and the Compassionate Care Employment Insurance. We aren't really that close to needing to fill out the forms, but thought it might help having them here and then we can work on them a little bit at a time.

I still find it hard to deal with complete opposite thoughts - plan for disability and death while remaining positive that Callum can beat this! It is a new form of brain gymnastics to me! This is one of the hardest things I have ever done. And we worry about very different things - he is so worried about me and how I will make out when he isn't here. I will be fine. I have lots of family and friends who will help support me. We are fine financially. It will be the first time I will have ever really been alone, but it will be OK. I tend to worry more about what happens between now and when he is really sick. It overwhelms me to think about him being really sick all the time - not just these few weeks here and there. I rely so much on his strength. I will need to find many new sources of strength so that I can share mine when he needs it!
I have ordered a treadmill - he promised me he will use it if we had one. And I need to get back to doing something and it needs to be easily accessible. Exercise is really the only thing he hasn't been doing that would really help him . I just can't seem to help him understand that he will need to do it for 3 or 4 weeks before he will feel the difference, and that it will help him get through the chemo treatments easier. He is quite fatigued, so I am sure he finds it hard. Hopefully the treadmill will help, even if he goes on for only 5 minutes at a time.

This has turned into a very long post. I suppose I should write more often. Sometimes it just seems to be hard to find the time and energy to stop my busy brain long enough to put thoughts together and write. Although, I am not sure this was the most coherent post I have ever written!

TTFN

radiation fatigue

I can't believe it has been over a week since I blogged. The radiation is taking its toll. Callum is very tired these days. The dexamethasone seemed to help him get over the nausea hump and he worked a couple of days last week. But he was exhausted on the weekend. He was a bit better on Monday, but was warned by the radiation techs that the fatigue will set in again during the week. And so it has. He had to have a nap this afternoon and was a bit grumpy before supper. He was much better this evening, though. He still gets a "funny tummy" every now and then, but is eating better. He will have a week of recovery between the last radiation treatment and the next cycle of chemo. He won't have chemo now until Oct 15. We ordered some Usana nutritional supplements that were recommended by the lead researcher at the Colorectal Cancer Association of Canada. They arrived today and Callum started on this buffet of pills at dinner tonight. It is quite a mixture but is expected to help lessen the side effects of chemo and radiation and help him feel better overall. The research is quite positive so we are sure this will help improve the quality of every day. It can take a couple months to get the full effect, but we hope it happens quicker for him. We met with Dr. A on Monday and mentioned to him that we were wanting to take a trip to Scotland, and wondered when we should be taking that trip - before or after Christmas. He recommended we take it sooner rather than later and suggested we do it before Christmas. We are looking at making this the family trip to Scotland that we were going to take about 16 years ago (better late than never?) and have Jamie, Vanessa and Stuart come with us. With all of our various schedules it is looking like we will be going in early January. This conversation led to a discussion about the change of life expectancy now that there had been cancer spread into the brain. Now, sometimes time frames are wrong and sometimes they aren't helpful. And there are some mitigating factors in this case such as the brain lesions were found quite early and the gamma knife is usually quite a successful treatment and would impact life expectancy. The bad news is that he said he would estimate Callum's life expectancy between 6 months and a year, possibly longer than a year. Callum is more determined than ever to prove him wrong and be here for a lot longer than that! We heard just this week of some new and exciting research about a potential cure - viral therapy. They are hoping human trials can start in 2 - 3 years and he plans on being part of that trial. Check out the story at http://www.colorectal-cancer.ca/ .
Callum's parents arrived on Sunday for a visit. It has been nice having them here, especially when Callum has been home during the day. My sister and brother in law will be here Monday for a visit, and then our brothers and their families, along with Vanessa and Stuart will be here Thanksgiving weekend. It will be nice to catch up with everyone!

I think that is all for now. I have been a bit tired this week since I was away at an art retreat on the weekend - I was the organizer, not one of the artists! It was a beautiful location and a great retreat, but I am looking forward to some time off next week. Time for bed tonight......

"May you LIVE all the days of your life" Jonathon Swift

TTFN