Sunday, March 27, 2011

Neuro News

We had a great appointment with Dr. F., the neurosurgeon, on Thursday.  It was a follow up appointment from surgery.  Dr. F. showed us the brain CT scan from before the surgery and the brain CT from this past Wednesday. It was amazing to see the difference! The swelling from before the surgery pushed the  brain around a bit and filled in lots of spaces.  The most recent CT scan shows a return to a normal size. It was incredibly emotional for me to see such a difference - the first time in over 2 1/2 years to see a cancer free brain!!

Now we just wait for the CT results of the chest, abdomen and pelvis. I am not sure if we will have the results before our April 5 appt with Dr. H., but will blog when we have news. We can only hope for the same good news. We know that realistically there is always a possibility the news won't be as great, but we have to continue to hope that Callum will once again beat the odds!

Here is a picture of Callum with his planning "cheerios" on his head before the Jan. 26 surgery:


Please continue with all the positive thoughts and prayers!


"Life is an opportunity, benefit from it. Life is beauty, admire it.
Life is bliss, taste it. Life is a dream, realize it.
Life is a challenge, meet it. 
Life is a game, play it. Life is a promise, fulfill it.
Life is sorrow, overcome it. Life is a song, sing it.
Life is an adventure, dare it. Life is luck, make it.
Life is too precious, do not destroy it. Life is life, fight for it!"  Mother Teresa


TTFN

Thursday, March 24, 2011

Jumping through hoops

 One of the things that can be frustrating when dealing with cancer in your household is finding support for the caregiver.  While I have the full support of my doctor and my employer to take a sick leave, the insurance company does not consider me "disabled" so have declined my application for short term disability. I have already agreed to a diagnosis of depression, treated with medication and a referral to a counsellor at the mental health services. So....hoop 1 and 2 done. 

I talked with the intake worker at mental health yesterday - and she surprised me.  I totally felt supported and understood. She very lightly questioned the depression diagnosis and suggested that my main issues really are about grief and loss, and the end of life issues with Callum. She absolutely believes I should not be working, but that I am also a very capable person. It was a great 15 minute conversation!

Anyway, she took the day to sort out what would best meet my needs, and was going to try to get me into to see a psychiatrist fairly quickly. She said she knew a couple that were very supportive of people in my situation, and who also had a lot of clout with insurance companies. Hoop #3 just presented itself. 
I am sure hoping that they know all the right words and write nice insurance friendly letters! 

I did have a message from her today with an appointment for next week, which I am trying to change as we are in Medicine Hat for the week.  

I can't imagine what this kind of thing can be like for those who are not as strong, or have the experience in dealing with these issues. I have spent a lot of my working life having to be creative and advocate for people, so I know I am capable of keeping at this until the decision is reversed.  

In the meantime I applied for Compassionate Care benefits from Employment Insurance - they were approved very quickly. It is amazing at how easy it was. Thank you Government of Canada!!

If you know anyone who might benefit from my experiences in this realm, please let me know - I would be most happy to try and help lessen the burden for someone.


TTFN

Tuesday, March 22, 2011

appointments, appointments, appointments

This is another one of our busy weeks. It seems that if it weren't for doctor appointments we might never get out! Or maybe it at least explains why we enjoy so much the comfort of staying home!

Today started with a trip to the lab to have blood drawn and a visit from the home care nurse just before lunch. Things seem to be fine. We didn't hear anything about the blood results so that should mean everything's a go for chemo! The nurse gave some suggestions on something to ask the Dr about that might help with mouth sores.

After lunch was a visit to the family Dr. for some prescription refills which also included increasing the dose for the long acting pain med (hydromorph contin).  We sure hope he gets some better relief from the pain now.

Callum was tired today with all this activity.  And we have tomorrow to get through yet!

Wednesday starts early - 8 am - for chemo.  In the afternoon we need to be at the hospital at 2 for a CT scan at 3 pm.  It will be another long day for him, although he might catch a nap at chemo!  I am always a bit anxious before the tests, even when we don't find out anything that day! Based on our previous experiences,  if the news is "good", we likely won't hear anything for about a week. If the news is not so good, we kind of expect a phone call by the end of the week. I think we are both a bit nervous this time round.

Thursday morning we see the neurosurgeon for follow up from the surgery. We believe there have been no issues so I am sure it will be a quick appointment!

Callum is feeling tired more often these days. I am really hoping that the pain meds will help him feel better and get some energy back - pain is so debilitating. His leg can get quite sore, and the mouth soresI think I might have to come to the realization that his good days now look different than they did before.  Up until now I thought that if the pain could just get managed properly that he will have energy and be able to get out and about.  Perhaps it will not be like it was before. He thinks he has lost a bit more weight and he is starting to look thinner. It can be worrisome. However, he remains positive, and will not  give up - no matter what! As long as the doctors believe there is good reason to continue with treatment, he will do so.  He has amazing drive, determination and commitment to beating this wretched disease!

If we get good news on the CT scan we will be asking about moving treatment to Medicine Hat. There may be a couple of hoops to jump through, but it would be worth it to have to have him travel so often.

And on goes the week - we'll head to Medicine Hat either Thursday or Friday, depending on weather, road conditions, and whether we have any short notice dr. appointments.

"If the essence of my being has caused a smile to have appeared upon your face or a touch of joy wtihin your heart, then in living I have made my mark."  Thomas L. Odem Jr.

TTFN
Lorna

Tuesday, March 15, 2011

Update is overdue!

WOW! I started this update 10 days ago!!  I hope to have it finished tonight! Yikes!


I sure didn't realize I hadn't updated the blog since before Callum's surgery! Ikes! So many things have happened since then - I will try and make it short....but don't count on it!


On January 14th Callum turned 50.  What a great party he had!  We had over 70 people attend the party -a testament to show he is a very popular and respected man.  Desert Blume Golf Course did an awesome job of the tea and dinner - if you need conference, meeting or banquet space in Medicine Hat, check them out!


With the recent news of the disease progression it was quite an emotional day.  We kept it upbeat and positive - it was truly to be a celebration! Callum had an idea that there would be some family travel to have a birthday dinner, but he was surprised about the afternoon party. We are both so lucky to have so many family and friends who took time out of their busy lives to help us party!


Sorry I don't have pictures yet. We had a photographer taking pictures so I could enjoy the party. I will post some as soon as we get them!


The weekend after the birthday we headed to Calgary to see Vanessa get recognized at the graduation for the new Chartered Accountants in southern Alberta. We are so proud of her and Callum was more than thrilled that he was able to attend. Callum's parents also joined us and that was very special for all of us.


 




 









January was certainly a busy month!  After New Year's, birthday party and the CA Ball we went home and prepared for the upcoming surgery. It was so nice to have a lot of celebrating to keep our minds off such a serious matter.

The surgery went really well.  Callum had his scheduled surgery to remove the tumour in the right cellebullum at just after 8 am and about  3 hours later Dr. Fourney came and told us that the surgery went quite well.  Unexpectedly, at least to us, the tumour was not as big as they had thought. Some of the tissue that enhanced on the CT scan was scar tissue from the radiation treatments. The tumour was about the size of a golf ball - considered to be large according to the surgeon.  They were able to get all of it and that as far as the Dr was concerned at this time, the disease is stable in the brain.  The battle with the disease will now be systemic – which means the danger now lies in the lungs and bones.  Dr. Fourney said there would likely be no more than a 10% chance that there will be recurrence in the same area, and unlikely, although not impossible, that there will be new lesions develop in the brain. 

 He did have a platelet transfusion as there was some concern with him not clotting and this could cause problems. But, like all other things he has encountered, he took it like man (wouldn’t he just love me saying that! Ha ha) and has had no problem with it.

 There are few words to describe the great feelings we had when we heard how well the surgery went.  Both of us have a great sense of relief. We know the ups and downs of this disease and treatment. And more than the surgery itself, we both feared there was something worse they would find, and we would have a far different outcome. Again, one of those weird times when we are ecstatic about the outcome – weird to happy for a regular old brain tumour!

Callum was released from hospital about 48 hours after he was out of surgery! He had a pretty speedy recovery and had the 23 staples removed 2 weeks later. He started chemo on Feb. 9 - 2 weeks after surgery! He had a chance to delay it but wants to keep at this thing as aggressively as possible.  We hope at the very least that it will at least help slow the progression of the disease.

He has been handling the chemo side effects pretty well. He has few days where he is quite tired and seems to have increased pain the leg - but meds seem to help him get through it.  He will have a CT scan of head, chest, abdomen and pelvis on March 23.  We should know shortly after that if the chemo is still effective or if there is disease progression. 

I on currently on sick leave until at least April 15. I am so lucky to have such an understanding board of directors and doctor. We are spending most of our time in Medicine Hat so we can be closer to family and enjoy time with Cade more often. Callum and Cade have a very special relationship - it is a joy to watch. 

I am sure I have missed a few things here and there....but basically we are at status quo for now. Chemo until it doesn't work or the side effects are too hard on Callum.  The March 23 CT scan should give us some information.

I will endeavour to update more often!!

He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has.  ~Epictetus
TTFN
Lorna