Run For The Cure

Wow ! What a great morning ...Brad, Colin, myself and Colin's friend Devon joined the Ridley College team in the CIBC Run For The Cure in St Catherine's. It was a gorgeous sunny day and the 5K route wound its way along the Welland Canal . There were thousands of runners and walkers all doing their part to raise funds for breast cancer research.

I picked up a pink "survivor" tee-shirt for mum . She wasn't at the walk , but I felt as though she was right there beside us all the way.

Beautiful September

The definition of a Harvest Moon is: the full moon closest to the fall equinox. The Harvest Moon was thus named because it rises within a half-hour of when the sun sets. In early days, when farmers had no tractors, it was essential that they work by the light of the moon to bring in the harvest. This moon is the fullest moon of the year. When you gaze at the moon, it looks very large and gives a lot of light throughout the entire night. No other lunar spectacle is as awesome as the Harvest Moon.
Harvest Moon Lore

It's a full moon tonight . While I am not one for symbols and suchlike, I noted that the symbolism tonight is quite appropriate because the full moon according to mythology represents the goddess of love and battle.

It's a great analogy after the past couple of days because I feel that those horrible little cancer "gremlins" are waging war and mum is fighting back quite successfully . Perhaps a cure is a long-shot but there is no doubt in my mind that love is the balm. It soothes pain and allows the body to to emerge from adversity renewed and healed.

Good News

It was wonderful to see Andrew. He looked a little tired but fit and well which was great to see considering his recent surgery.
On his first night we had a lovely diner at Paradiso in Oakville with Doug and then set off early the next morning to Buffalo . Tuesday was a real ordeal because the veins in mums arm are not cooperating and it was challenging to access a vein for her bloodwork and injections for the CT and bone scans . Thanks to the outstanding nurses at the breast clinic , she managed to get everything done all in one day and the only thing we had to do was to have an appointment with Dr O'Conner this afternoon .
The news was reassuring. Although the doctor still has to locate the films of mums original bone scan, she was pleased with the results which were as expected. Her CA27-29 was 7.8 and her CEA was 4.2. Her CT scan was largely unchanged except for an interval increase in sclerosis (A thickening or hardening of a body part)associated with extensive mixed lytic (breakdown of bone ) and sclerotic skeletal metastases; the interval change may be a therapeutic response rather than progression of disease.. The metastatic disease is most marked in the spine and pelvic bones bilaterally.

I find that reading the scan results make me feel somewhat depressed because its mum they are talking about not a "70 yr old female CT chest and pelvis w/contr" and it is a bit stark seeing the word "metastatic" but I also recognize that mum is doing very well. The disease is still confined to the bone and she is responding to treatment . This is the best we could possibly hope for and for that, I am extremely grateful.

Before driving Andrew to the airport,we managed to sneak in a quick visit to Colin at Ridley and a fast dinner at the Swiss Chalet . Mum is exhausted now and she went straight to bed once we got back. She is back on the Fentanyl patches for pain and has new medication for nausea .

Good to be back home ..... a very long , but positive, couple of days. Thankfully , we can cancel the appointment next week . Her next appointment is not for another three weeks just before the cruise .

A waiting state of mind

I think overall, this has been a good week for mum. Her move is (almost) complete and I think that she can finally settle into her new place. She is really looking forward to her trip and was out today with Doug getting him kitted out with some new clothes (he's dropped a few pounds since his surgery )
The "downer" is that we are back to that "waiting" mode. Waiting for Andrew to arrive tomorrow, waiting to get the scans over with , waiting to see if she can work out an alternative schedule for the Zometa infusion due to her travel plans and most importantly, waiting for the results of the scans at her appointment a week from Wednesday . Anyone who has been a faithful reader of this blog, will know that waiting is not something I am good at. All this "be in the moment" stuff wears rather thin.

My wish right now is for a pair of X-Ray specs that could zoom into mum and pronounce that she has passed her medical and is fit for active duty. Mostly, I don't think I need them because I do have a tendency to scrutinize her closely for any signs of aching bones . Another reason why her trip will be good, gives us both a break from this hyper-vigilance.

Seize The Day

Growing up as a child and young adult in South Africa, the sight of women carrying huge loads is very common. You see women carrying water and firewood on their heads and babies on their backs. Poverty means that your choices are very limited and your own labour has relatively low currency. To a typical African women, we must seem extraordinarily pampered here in North America.
I don't think I have ever seriously reflected about what it must be like to do hard physical labour every single day....to haul things, to fetch , to drag and to push. What must it be like to have no relief ? I am very fortunate that I have the means to hire someone to share the burden of my various chores.
This summer I have done more than usual physical labour and I'm ashamed to admit that my relatively measly amount of work is wearing me out . I get quite demoralized with the sight of moving boxes and frustrated with myself that I can't just leap into action and drill a hole, fix a broken light switch and shove heavy objects out of the way. The truth is that I feel quite helpless.....an uneasy state of mind for my kind of personality.

Mum and I are both very similar. For her, to sit back and watch others work is not something she is comfortable with. She gets frustrated relying on people and I know would rather just get the job done .She hates waiting around with half finished projects. I try to console her ..."C'est la Vie ", "Let it flow" ....all useless platitudes as we both know that the slightest hint that our independence is compromised is an utter anathema and something to be avoided at all cost.

Carpe Diem is our mutual philosophy ...or...get bums in gear....NOW !

Where mum is going next !!!!!

Mum and Doug are leaving on the Queen Mary 2 on October 19th from New York to Southampton, staying a week visiting relatives and friends in England and then returning from Southampton on the Royal Caribbean lines via France, Spain and Madeira to Fort Lauderdale.

I am so happy for them both .

Shopping

Mum and I quite enjoy Ikea. When she first arrived in Canada, we were content to pick up her furniture almost exclusively from the store as she still owned her flat in Ferndown. I will never forget Mum, her friend Viv and myself spending EIGHT HOURS one day at the Mississagua Ikea getting all the stuff she needed.....must be some sort of record ! Today, we decided to take a trip down memory lane and we ended up buying a picture for Colin's room . The Mini is very small and the picture is very large and so we ended up literally jamming everything into the car and mum and Colin folded themselves into the car for the drive home. I laughed hysterically at the two of them when I took the picture but Mum didn't have quite the same sense of humour(she was perched on the edge of the front seat) ....all she could think about was arriving home in one piece !

We chatted tonight on the drive back from Ridley.We both recognize that she's come a long way ....there were some extremely bleak days a short couple of months ago....finally getting out and about and doing some ordinary things is very healthy for both the body and mind - Mum certainly does not want to be wrapped up in a cocoon.

Andrew arrives next week and he will be going down to Buffalo with mum for her CT and bone scan . I just have to believe that she will have positive or stable results - I can't (won't)even consider the alternatives .

First Week Of School Over

Brad and I picked Colin up from school today . He was extremely cheerful and very happy. He was waiting for us outside his boarding house in bare feet , shorts and a tee-shirt - I haven't seen him wearing his school uniform yet ! He had a great first week , busy but extremely positive. He was a bit disappointed that he didn't make the soccer team but there is such a huge variety of sports to choose from at Ridley that I am sure he will eventually find his niche.
It was wonderful too see him again. It felt like a longish week for me (and his grandma) without him!

I'm thinking about changing the title of the blog !

You know it's late summer in Oakville when you inhale that familiar stench of rotting algae coming on from the lake. It is truly disgusting . The good news is that the pills mum takes for nausea are effective because if she can handle the Cladophora she is really improving.

Busy day today -

Purchases
1 bed
2 cordless phones
1 Lazy-Boy leather recliner
Fed-Up Phone Calls
Bell Canada
Cable Company
Food
Lunch with Doug at the Oakville Club
Late night dash to Oakville Club again for comfort food order of two kiddy grilled Cheese Sandwiches and fries


I am feeling relatively optimistic today so I have decided to change the title of the blog ...the term "coping and hoping" seems almost redundant now. I've just got to come up with something new .I'll mull it over ....

Back At Bridge

Bridge is such a sensational game that I wouldn't mind being in jail if I had three cellmates who were decent players and who were willing to keep the game going 24 hours a day

Warren Buffett

Mum has always stressed to me from an early age the importance of knowing how to play a decent hand of bridge. For her it has meant that wherever she is in the world it's possible to always find a group of like-minded people and have instant rapport . Since she moved to Oakville,bridge has provided her with a great social outlet and she has been fortunate enough to meet some lovely people through the game. In particular, she enjoys her Oakville Club friends and today she made it to her regular Tuesday gathering. She looked terrific, happy, relaxed and very cheerful . It's wonderful to see her look so well as this move has really been hard on her.Today ,for the first time in weeks, she really seemed like her old self . We cracked up with laughter tonight in her condo because I told her that she had to prove to me she had no pain !She decided to do a dance around the living room just to show me that she is quite fine and pointed to her mounting collection of canes gathering dust as evidence that she is perfectly mobile.

Satisfied, I left her for the evening feeling really pleased that she has had such a great day . We just need another....and another and one after that ......

Aches and pains

I'm feeling quite stiff and sore tonight. I have worked hard all day in mums condo cleaning and sorting . I suspect that whatever aches and pains I am experiencing , my mother copes with a great deal more discomfort every day. When I was clearing out mum’s bathroom I could’nt help but notice a wide array of Tylenol, Anti-inflamitories and funny smelling gel rubs ! It would guess that mum has been quietly living with pain for months (and maybe even a year or more ) prior to her diagnosis. She always put it down to her back or her knee “playing up” and I don’t think she really realized that she was starting to live in chronic pain. If it was’nt for a chance visit to the emergency room back in April I wonder how long it could have gone on before she was finally diagnosed .

Mum is still reluctant to take pain killers . Part of her wants to feel the pain, or a "twinge" as she calls it, to allow her to monitor her own body and symptoms and part of her still has a belief that somehow taking pain medication is in some way “bad”. Thankfully, the philosophy of her doctor at Roswell Park is to take a very open and collaborative approach to pain. She is encouraged to basically take as much (or as little) pain medication as she feels is appropriate and there is always someone to contact if she needs a prescription or wants to talk directly to the pharmacist. The goal is for mum to feel comfortable and pain free at all times. From a personal perspective, I can see quite clearly that any fear of “addiction” or “dependence” is totally misguided. Mum is brighter and more energized when her pain is under control and is extremely lucid and coherent even if she increases her normal amount of pain medication.

Sadly, individuals diagnosed with cancer and other serious diseases including AIDS in the developing world are unable to access appropriate pain medication. An article in todays New York Times was startling .Six countries — the United States, Canada, France, Germany, Britain and Australia — consume 79 percent of the world’s morphine, according to a 2005 World Health Organization estimate. The poor and middle-income countries where 80 percent of the world’s people live, consumed only about 6 percent of this relatively inexpensive drug. This fact alone is quite startling and underscores the wide disparities in global healthcare . For example, if you are unlucky enough to live in Sierra Leone, you have no legal access to morphine and the majority of people with painful illnesses have to endure uneccessary pain and suffering.

Mum is fortunate to be able to access good pain management services and there is no stigma attached to her use of pain medications . I suspect the things that work in her favour is her relatively high pain threshold and a very positive approach. She’s a tough Scot and she would have to really be in real discomfort to prevent her from getting on with life.

I am just so thankful she has that option.

Spa Day

The Zofran seemed to work and so thanks to the recommendation from Dr O'Conner , mum and I took ourselves off to the spa in Williamsville. It was a great escape and we certainly relaxed. We hit the "House Of Pancakes" on the way back to the Doubletree ....yuck .... a bad idea ....mum really has to watch how she eats from now on.

It was an incredibly hot and smoggy day in Buffalo with temperatures well into the 90's . I just hope that Colin is doing OK at Camp White Pine in Haliburton. Hopefully it's a lot cooler up there and he is having a good time . I'm counting down the hours until I see him tomorrow.

Midnight dash to the drug store

Today mum woke up feeling very nauseated again. She struggled bravely through the day without complaint but eventually I had to phone the doctor on call at Roswell. He prescribed a drug called Zofran which is meant to be excellent at combating nausea. Wow is it expensive ....$20 per pill and she takes two at a time. The main thing though is that it seems to work. Mum was quite definitive,if she had a choice, she would rather have the pain than the nausea ....it's that bad . We went to the Walgreens downtown Buffalo to pick up the prescription. It's quite a sleazy place at night. Last time I was there I almost called 911 because a crazy woman was getting out of control in the aisles . This time I heard something crackle on the security guards radio about a drug dealer and a gun.

We couldn't get back to the Doubletree fast enough.

Finally at Ridley for Colin

The summer holidays are over now for Colin . we said goodbye to him today at Ridley . He seemed very happy and cheerfuldespite the hot and humid weather. Mum also decided to go to the school and had a very happy day wandering around and chatting to everyone. She even had a glass of red wine at a reception this evening ....the first for a long time. When we were at the hospital, the Nurse Practitioner suggested that mum should go off the pain patch as it could be contributing to her nausea. She followed her advice and so far it seems to have eased off considerably. Mum is now on Oxycontin, but it is not a very high dose and I suspect it helps her feel more alert .

We heard that Andrew is back home in Vancouver. That is a huge relief .

Family Stuff

It's pretty obvious that mum did not have the best summer but despite everything, Colin has had a good time being twelve years old and reasonably care free....as long as he has his computer and nobody disturbs him.....

First day of school tomorrow for all three of the grandkids...Grade 7 for Colin and Grade 8 for Lexi and Jen.

Still no real news about Andrew , but apparently he is being a bit demanding about getting out of the hospital . Sounds as though he is more like his old self ! What a relief to know he is out of danger. Apparently the surgeon wanted to take him in at midnight but could not get an operating room and so he slept right in the hospital until 3am when they could take Andrew into surgery . Hilary has said that it will be at least ten days before he can start to move around ....this will not be easy for an active guy like my brother . We just wish we could see him and be near him .

GET BETTER SOON ANDREW XXXX

Appointment

Walking into Roswell Park today was very familiar and vaguely comfortable. Mum and I both know the routine .... get the blood work done fast , ask the nurse for a pager so we don't have to sit in the crowded waiting room and have a list of medications handy .
Both mum and I tend to gravitate towards other people in the clinic. Mum chatted a woman she remembered from her last visit and I spoke to a friend of a young mom of four kids who is battling to cope with her diagnosis. There is a real sense of camaraderie at the clinic as there is an unspoken understanding that despite the cheerfulness of Roswell Park ,the walls of the place absorb a great deal of pain and sadness.
For us though, it was a very positive appointment. The verdict was that mum looks like a "million bucks ". Everyone was very pleased with her progress. Her CEA was 3.9 and her CA 27-29 was 15.8 She is due back on September 25th for a bone scan and a CT scan and she will get the results a week later. The picture I put up today is in the infusion room with one of her favourite nurses Katie. Katie was the nurse that looked after my mum just before she was admitted to the hospital with the espophagitis . Without exception, every single staff member here is incredibly kind and polite. We have yet to encounter one rude person in the entire hospital but sadly, we have become quite conditioned to unfriendly and officious attitudes in the healthcare system generally. I find now that I have no tolerance for any kind of rude behaviour and have raised my expectations accordingly. If Roswell Park can achieve outstanding patient focused care why can't we replicate this in other hospitals ? I'm not wanting to knock the Canadian healthcare system here, but I have personally encountered too many doctors and other healthcare professionals that should not be let loose on vulnerable and fragile individuals. Condescending and patronizing attitudes, long and unecessary waits for treatmentsand miserable drab surroundings create a demoralized and depressing atmosphere which has a direct impact on the quality of care . There are no easy solutions , but I do know that healthcare workers are held to a high standard and if they can't make the grade then they should find another job....

Get Better Soon Andrew

It was a long , dreadful drive to Buffalo tonight . The Peace Bridge was closed for some reason and we had to go over the border at he Rainbow Bridge in Niagara Falls. As it was dark, we had a lovely view of the American Falls all lit up which was a bonus . We also stopped for dinner at the Hard Rock Cafe but all we could think of was our comfortable beds at the Doubletree . We finally staggered into the hotel very late and very tired .

We feel so much beter knowing that Andrew is recovering from his surgery. We talked to him on the phone on the way down to Buffalo. He sounded very tired and a bit drugged from the pain killers but relieved to be able to put the whole awful episode behind him. He asked Hilary to get him some magazines to read and a toothbrush which we see as a great sign that he is on the mend ! I also found out today that Andrew has'nt been 100% well in he past month but he did'nt want us to know in case we were worried. He had a very painful cyst on his back which was slow to heal ....... it makes me think that he was gettng run down and tired ....I wish I had known.

It's very hard thinking about Andrew in a hospital so far away as our first instinct is to see him imediately. This is very hard on mum as she realizes that she is not well enough to travel and has to focus on her own health . We will be relieved when andrew is finally back at home in Vancouver . When I think about what might have happened I feel a horrible anxiety and vulnerability.
He will see the surgeon tomorrow and we will have more information about the operation and his recovery.

The longest Weekend ........

We just heard this morning that my brother Andrew had emergency bowel surgery in Victoria in the middle of the night . It was a very serious operation and we still don't know all the details. What we do know is that he is lucky to be alive . According to Hilary, he is resting comfortably and is in no pain . Hopefully he will be out of the hospital in the next couple of days but he will need to recuperate for a long time . Mum is understandably very worried but she is trying to keep calm .

The move was tiring and frustrating , but the good news is that my mums new place looks great and she is very pleased with how it has all turned out . Unfortunately I am practically deaf with this ear infection and had to make a trip myself to the hospital last night .

We are heading down to Buffalo today , doctors appointment tomorrow and then St Catherine's on Wednesday with Colin to drop him off at school. We will stay in Buffalo until the weekend because there is still quite a lot of work to be done at the condo . Hopefully by Saturday night mum can move in properly and I have just another week to go until I get the keys to my place .

Arghhhhh ...... OK I know all about the light at the end of the tunnel stuff.....but this is just too much. My poor brother ......I just can't stop thinking about him . He is the "invincible" one ...the rock of our family and when something happens to him, it makes us all feel very vulnerable.