Reality check and ramblings

Quick warning - this is going to be a long blog so be prepared to settle in for a few minutes - maybe grab yourself a refreshment! And please don't be worried - I am writing to help my process - I am really OK. The blog is how I work through the many things that comes with having a loved one with cancer.

I have marvelled this week at how well our brains protect us. They are such an incredibly busy organ! They make sure we continue to breathe and have blood flow, along with keeping everything in our bodies working like clockwork. And they even protect us at times from our emotions. I have had a couple of "processing" days this week. I am trying to get some things re-framed and back into a positive perspective. When we met with Dr. Ahmad he clarified for us that chemo will be something Callum will do now until either it quits working or Callum can no longer tolerate the side effects. We were both thinking that after 6 months there was the possibility that he wouldn't have chemo for a few weeks or a few months. Sadly, that is not likely what will happen. Reality check. Callum has not said much about how he feels about this new info, but he was quite grouchy Tuesday and Wednesday. He did have the port line put in and had to take some T-3's for the pain so that may have been what the grouchiness was about. Anyway, this reality check has started a bit more processing in my brain. I have been quite disappointed and sad that chemo treatments every 2 weeks is what we have to look forward as the "good times". It is possible for him to take a break from it at some point if he wants, but the reality is that most likely when he is totally done chemo is won't be because he is doing well. Of course, once I get this processed I will again be able to draw strength on the hope and belief that he will be one of those few people at this stage of cancer who will become cancer free. In the meantime, I am dealing with the reality check. We had been looking forward to the future in the terms of "when the 6 months is done" and making plans based on his recovery after the chemo treatments were finished. Now we will be making plans for the "good week" and hope there are no more complications. It also hit me these past few days that we are now, right now, living our "retirement". I think I was relying on those precious months without chemo to try and squeeze in our retirement. Now I see it will have to be planned around chemo treatments. Oh, how my brain nicely shielded me from these realizations. I have certainly felt more sadness about this during these past few days. Part of this process is also around Callum and his commitment to his work. I know how much he loves his job right now. He is having so much fun there that some days he says it doesn't feel like work! Work is what keeps him sane. So I feel so guilty and selfish when I wonder if we will have time to enjoy our "retirement". In my heart of hearts, I know to trust his wisdom and I am confident in his assessment of how we will figure out when he will need to no longer work. I am the real impatient one who either needs to know what the next 10 steps are, or I work at making up the next 10 steps! I am not a great "one step at a time" person. Callum is and he really has not disappointed me in the past. I find it hard to feel comfortable with what I think about what things we should be doing while he is still healthy. It feels like I am selfish and not taking into account his needs and wants. But what about us? His family? His friends? Is there a balance with everyone's "wants"? Oh, if it was only as simple as a bi-weekly chemo treatment! I think I am having a bit of grieving time. It is healthy at this point - sure don't want to save all of that up til the end! But I have found myself in tears a bit more the past couple of days. That is why I thought I better blog. I am hoping it will help me process this stage of things and get some of the stuff out of my head. There really isn't a reason for me to feel less hopeful or positive. Things with Callum are going as they should - and he is doing great! It is only my perspective, and the fact that my brain has let me process this information that has changed. The facts remain the same. I know that after all the things that have happened, it likely sounds kind of odd for me to say that these past couple of days I have felt like I am in a bad dream and living a life that "those people" live. "Those people" that I have in the past been very sorry for, and so thankful we hadn't had to face such things. I always thought we would be the people who were spared. It has been quite surreal. I think maybe we have been so busy and focused on the flu, blood clot and gamma knife surgery that I didn't have time to feel. Only time to do. And I am great at "doing". I am a doer. When faced with a problem, I fix it. I can't fix this. So I have to process it. Me. Process. So many of you know me quite well -can you imagine how foreign it is for me to "process" - and over many days? I have been doing OK with it, but it does seem odd for me to not know what to do - or to at least do something! I really want to emphasize how important it is to not worry that I am going off the deep end. This is normal. It is hard, but it is normal. In fact, maybe many of you will feel some comfort in knowing that we know the reality of the situation - we just choose to focus on the hope and belief that good things are heading our way. We are looking forward to at least one winter vacation to Jamaica. And we are hoping we are able to get to Ixtapa to visit my sister. And the chemo treatments, while really are long term, can happen for another year or two. I am confident he will respond well and tolerates the side effects, we will still have a long future ahead.
Well, I am feeling much better know. Thank goodness for blogs...somehow it seems easier to write on the computer than on paper. Thanks for "listening"

"Life is not the way it is supposed to be. It's the way it is. The way you cope with it is what makes the difference." Virginia Satir

Callum or Darth Vadar? Pictures.....(not for the faint at heart)

The day after brain surgery!













After surgery - only bandaids






Little spot after headframe removed














Headframe pins in front and back








Headframe and plastic helmut used for MRI and planning coordinates - side











Headframe and plastic helmut used for MRI and planning coordinates - front




Headframe side













Headframe - front

The night before gamma knife surgery

Gamma Knife

Things went really well on Wednesday - Callum was the star patient! We were at the hospital by 5:30 am, IV catheter in by 6:10, MRI done by 9 am. Then we waited and waited. There were 2 other gamma knife patients there that day. The lady was back for her 2nd treatment. Last year she had treatment for 23 tumours in her brain. All were gone after treatment but she had 2 new ones so that was what was being treated on Wed. The other gentleman had 8 tumours that were being treated. We were very happy to hear that neither tumour had grown much, and there were no new ones there. Very positive news! Callum went in for his treatment about noon and was ready to leave the hospital by 1 pm. We went back to the hotel and he had some lunch and a rest. He took 2 doses of Ibuprofen that day and has been really well since then. He has had a bit of swelling at the sites where he received the anesthetic and where the pins of the head frame were attached to his head. We played 18 holes of golf on Thursday - not bad for the day after brain surgery! I took some pictures that day so when we get home I will post them. There will be a follow up MRI in about 3 months, and it does take 3 - 6 months for the tumours to shrink so we won't know for a while how successful this was - but we are confident it was very successful. The did mention that sometimes the site of the tumours swell so they may look bigger at the 3 month exam, but not to worry about that.
We have had some great visits with family and friends - and some great meals. All in all it has been a wonderful week. Next week we look forward (in a weird kind of way) to resuming chemo treatments. We are hoping all goes well and we are done with the bumps along the way.


I must say thank you to everyone who has phoned or emailed best wishes to us. I haven't had the time to sit down and respond to emails or return calls - maybe I can get to it next week when things quiet down a bit.

Thanks to all of you for walking along this journey with us - we know you are all thinking and praying for us - we truly appreciate it.

TTFN

Gamma Knife consultation

Today we met with Dr. West, the neurosurgeon who will be doing the gamma knife surgery. The appt was just over an hour - a lot quicker than we thought it would be. Janice, the RN, did a medical history and then a quick neuro exam. Callum did quite well, although he did have a couple of minor balance issues. Dr. West commented on how lucky we are to have found these spots when they were so small. Callum had 2 fears before this appt - one was that something would happen and they would say he wasn't eligible for the gamma knife anymore. That one was put to rest quite early on. The other was that new spots would show up on the MRI on Wed and they would decide not to do the gamma knife. That one was also put to rest as they mentioned that since the last MRI was June 24 there was a chance there would be more spots, but they would just zap them while they were doing the others. We were so relieved to hear that. The team is absolutely wonderful and certainly comforting. The gamma knife surgery itself will take anywhere from 1 - 2 hours, depending on the treatment plan. Callum will get set up with a head frame, and then a plastic helmut that will be used for the planning and then it will come off. The worst part about it is that he won't be able to wear his glasses all day so will be pretty much blind.

This seems to be a wonderful thing for us right now - a ray of hope after a couple of pretty crappy months. Dr. West also mentioned that if any spots show up later they can do more gamma knife surgery. It is always wonderful to hear that more treatment options are still out there.

It will be a very long day on Wed, but one we consider to be another start to the road to remission.

I know I didn't go into a lot of detail...so please let me know if you have any questions. I will let you know how things go on Wed.

Take care,

time for an update...

It has been an interesting and extremely busy week! We welcomed my friend and her daughter from Ohio for a few nights while they spent time with family in Saskatoon. It was so nice to see them but we were all so busy we had to have short mini-visits! As both of us were dealing with family medical issues we did the best we could and it was a pleasure to see them. We also had some time to visit with our good friends from Regina - again squeezed in the visits and tried our best to take advantage of quality, not quantity of time.

The oncologist appt on Wed was OK. This doctor mentioned that the last chest CT showed some new spots in the right lung, but reassured us that Callum really hadn't had enough rounds of chemo to accurately assess how he was responding to it. Dr. Ahmad wants the chemo to start again as soon as possible, and it would have started this coming week had it not been for the gamma knife surgery.

Callum will do some blood tests on the 18th, have a port put in on the 19th (it is a minor surgical procedure) and will start chemo on the 20th and 21st. It has been a nice break without chemo and neither of us are looking forward to the sickness that Callum experiences with it, but we are confident he was doing well on chemo before and are looking forward to a successful end of the treatment. His last blood test results were good - in fact - the cancer marker in the blood (CEA) was the lowest it has been in over a year and fully in the normal range.

We are in Manitoba and will meet with Dr. West and his team in Winnipeg on Monday morning. We will meet the nurses and doctors, he will have an exam, we will watch a video and we should be done by lunch. Then we will go back about 5:30 am on Wed morning to start the preparations for the gamma knife surgery. We are so excited to have this done so we can start to concentrate on the chemo treatments and whole brain radiation and getting him better. We have a long journey ahead...but we are looking forward to the future!

Keep up the positive thoughts and prayers....this is going to be an exciting week!!

more family times...

Family times...

Here are the reasons we all stay young!!!

Thoughts on the weekend...

We had a great weekend! We were at the zoo - saw the white baby bengal tigers - they were so cute! The girls did a shop til you drop day on Saturday while the boys golfed. It was so good for Callum to get out golfing - he played pretty good which was even better! He had some minor swelling in the arm where he had the clot but it hasn't caused many issues. On Sunday we went to a park that had some kiddie rides for the girls - they had such fun! It was just a blast all weekend to have them here! They made it home safely and we now have our next guests - an old friend from Brandon. She is here to visit her parents so she will have a busy few days.

Life becomes so different when dealing with a serious illness. It is almost weird how the weirdest, outlandish things become your "new normal". Let me explain. Callum and I had been disagreeing on which brain tumour is bigger. I have been trying to get the MRI and CT scan results so we could settle the disagreement. I was telling my nephew that I wanted to get the MRI report so that we could find out which tumour was bigger because we disagreed about it. He kind of gave me a strange look and then laughed. I realized then at how bizarre that statement was. But this is what we deal with. We have daily conversations about tumours, chemo, radiation and doctors appointments. It seems so weirdly normal for us. I sometimes forgot that many households don't usually talk about brain tumours, and the thought of them at all is so frightening they find it uncomfortable. OK - we are frightened about it, possibly a bit uncomfortable about it - but it is the cards we are dealt with (I need another metaphor for that, too - any ideas!). So, we deal with it.

We are both doing well - taking a bit of a rest today. Then we will be getting things together for our trip to Manitoba. It will be another busy week but we are getting used to that by now.

Happy August everyone!

appointments and appointments, sunshine and great weather!

We have had a really good week. Callum is feeling much better - I am sure from skipping the last cycle of chemo he should have had. We found out that he is scheduled for gamma knife surgery on Aug 13 and we have an initial appt with the neurosurgeon on Aug 11. So, we will head out on Fri Aug 8 and plan to return to Saskatoon on Monday Aug 18. We were so happy to hear that Callum is eligible for the surgery. I don't remember if they will do the gamma knife on both spots or just the largest - I guess we will find out for sure when we get there on the 11th. It is such exciting news for us. We meet with Dr. Ahmad, the main oncologist, this Wed the 6th, so hopefully we will find out when he will be able to go back on chemo. With hearing that it is looking like he responded well to the chemo he has had so far, we would like to see the chemo treatments start again as soon as possible. We don't like the sickness that goes with it, but we know how important it is in the long run. Stabilizing the disease in the lungs is the next important issue after treating the brain mets. We have an appt scheduled with Dr. Kundapar on Sept 11 so it looks like the whole brain radiation will likely start Sept 15. That is a guess right now, but based on what he told us before that is a pretty good guess.

We have been enjoying our nephew and his family these past few days. Went to the zoo yesterday and the boys are golfing today and the girls are off to the mall. It is busy but so much fun!

We hope everyone gets a chance to enjoy the long weekend -we will!!

Take care,