Monday, July 30

Tired.....

Mum is tired . It's a grinding, horrible kind of fatigue that is mostly associated with the side effects of the radiation. It is completely debilitating. She can get up for about an hour and then has to go back to bed to sleep.
Her throat is still sore , she has enteritis and I suspect she may be starting a cold as she is sneezing and coughing .
It's miserable. She does'nt want to be "sick", she wants to try and get up and do things, but she does'nt have the energy. It's awful and debilitating, but we just have to ride it out.

Saturday, July 28

Magda

We come from the earth, we return to the earth, and in between we garden.- Author Unknown

This has been a sad day. Magda Facherty, my mums sister-in-law and wife of Andrew , mother and grandmother died suddenly last night . I know my mum wishes she could be with her family now , her thoughts are with them today .


Rest In Peace Magda .

Friday, July 27

Home Again ....

It's hard to believe that we actually left the Doubletree as it felt like our second home. Mum and I had decided that we needed to get out fast as we were starting to get quite institutionalized . We noted all the comings and goings of new guests , commented on the lunch specials in the restaurant and wondered what the lobby would look like once the upcoming renovation was complete !
We cleaned up the hotel room as if we were moving house . We filled a garbage bag with old magazines and left over stuff from the refrigerator and empty pill bottles . We grabbed our last stash of hotel shampoo and soap and headed for home .
On the way, we stopped at Joseph Brant Hospital to see Doug who is finally having his bypass operation on Saturday. We bumped into his daughter Cindy as well as Janet and Marilyn . Doug was in great spirits and looked strong and well .

We saw Colin very briefly . He is growing like a weed and now is starting to tower over his grandma. Charlie jumped over mum and hasn't left her side and he curled up in bed bedside her like a cat . It's great to be back and wonderful to see my mother looking relaxed and well .

Thursday, July 26

Life Back at the Doubletree


Mum finally arrived back at the Doubletree . It was great to get her back into a proper bed and into relative peace and quiet. She is on i.v infusion until this afternoon when we can go back to Roswell and get her picc line removed .
She's doing very well ...so well that when she answered the door of the hotel room yesterday, the visiting nurse asked "Where is your mother?" thinking that mum looked far too good to be the patient ! That's mum though ....goes down hard , but comes back up better than ever!

Tuesday, July 24

She's Out (Almost )

It's a big day today for mum. She's finally leaving the hospital, radiation is over and she is not returning to Buffalo until next month . She is not due for any follow up scans for another three months and from now on, it will be up to her to assess how she feels. She has to pay attention to what is going on, her level of pain (if any) and monitor her energy levels and sense of well being .

This is really essential and it's important not to minimize or underestimate how she feels . She has access to the very best that medical science can offer her but she also needs to be a participant in her own care . It's very challenging , especially as she is on 11 different medications , but as she gets stronger , it will be less confusing . The staff here at Roswell do an outstanding job of explaining everything. The pharmacist. Jeff Lombardo went over all the medications in detail and we can call the breast clinic at any time for help and advice.
We are staying at the Doubletree until Friday. Some more i.v fluids for the next two days and time to rest and recuperate before going back to Oakville.

Mum is just so pleased to get out of the hospital, she's practically running out of the doors !

Monday, July 23

Still Here ....

Unfortunately mum has not been discharged from the hospital . She is still not drinking or eating enough , but she is making good progress. We will wait to see how she is doing tomorrow morning. This is dissapointing, but it's best to have her completely well before she leaves Buffalo .
Her last day of radiation was today . This was a milestone as it feels like a long haul. She was seen by the resident, Dr Luqman Dad and also Dr Presaud . She will be seen back at Roswell in three weeks for a follow up and she can expect more imaging studies in the next three months.
Dr Presaud said that she has no restrictions in terms of movement or exercise and she can do as much as she feels able .She can come back to be seen by radiation if she has any more pain , but typically she is expected to do well .

Hmmmm ...... mum had already started to pack her bags to get out , but she has to be careful for the sake of a couple of days.......

Her mood was lifted however with the news that Frank , her nephew from New Zealand is coming over for the first two weeks of August. This is wonderful news and we can't wait to see him.




Sunday, July 22

A Glorious Day here in Western New York







It was a gorgeous day here and I took the opportunity to head out to the Finger Lakes. It is a gorgeous area and a perfect summer day . I stopped off at The Geneva -On-The Lake Resort. The hotel has a great view of Seneca Lake which is the largest Finger Lake which connects through the Erie Canal to the Atlantic . I flopped myself down beside the very peaceful pool and fell asleep in the sun....not a bad way to spend the afternoon !


I think she's turned the corner !


I haven't posted too many pictures on the blog because mum hasn't exactly looked her best ! However, as I walked into her room this evening after my afternoon in the Finger Lakes ,I had to take a snap of her because for the first time in ages she looks much more like her old self . She seems stronger and more cheerful . She still is not eating or drinking apart from a few sips , but she's much improved and not taking any strong pain killers. We still don't know if she is leaving the hospital tomorrow but it certainly will not be much longer . She's starting to focus more on getting back to Oakville and her move to her new condo at the end of August .






Saturday, July 21

On The Menu

Mum is making some progress and is trying hard to get off the I.V food. This is not an easy task . When you take swallowing for granted, 2000 calories a day can be easily consumed in one meal ! She is working on a few small bites.

Lunch Menu

Tomato Juice
Pureed grilled chicken
Pureed potato salad (plain)
Pureed carrots
Chocolate pudding
Mashed potatoes x2
Strawberry Boost Milkshake Thick


She dutifully tried a little of everything ..... we're getting there ......slowly.



Getting to the 18th

Andrew's visit was exactly what mum needed. He brings a different sort of energy to mums hospital room . He mainly lifted her spirits which is very important because they were starting to flag. He is a good listener and is attentive not only to mums physical issues , but also to her emotional needs. He listens hard to any medical information and is able to reassure mum that she is indeed on the right track . On the surface, Andrew is a typical male, but underneath he is highly intuitive. When we spoke on the phone yesterday before he left for Vancouver he mentioned to me that when he went over to the hospital to say goodbye he could just tell that mum was having another bad day . Even though she was asleep, he could see from looking at her that she was struggling . Unfortunately , the side effects of the pelvic radiation have kicked in and her stomach is quite upset causing frequent and unwelcome trips to the bathroom . The doctor has prescribed medication and hopefully that will sort her out .

This morning is a beautiful day in Buffalo. It's sunny and warm without humidity . We are sitting in the room watching the Open Golf on the t.v . Mum is enjoying watching the players and mentioned that quite a few have played at her own home course in Ferndown .

If she compares this particular round at Roswell Park Cancer Institute to a game of golf at Ferndown, she feels she has passed the drinks hut on the 8th green and she is about to tee off on the 16th . It's not a very nice hole , but she tries to think about the best hole she's ever played as she comes up to take her shot . This helps to take her mind off a rather intimidating end to to a difficult game .

Wednesday, July 18

A busy Day

Mum had a "swallowing study" done this morning to check that there are no blockages in her esophagus. Fortunately everything looks ok apart from the ulcers. She then went for radiation followed by physical therapy.

By that point I think she was a bit fed up as the therapist made her walk for eight minutes on the treadmill. Apparently her heart rate did'nt even increase .....despite being in bed for more than a week, she seems relatively strong and fit. She also "passed" all the other tests . I could tell she did NOT want to have physical therapy , but tried to do all the tests and get out of the gym ASAP ! Robin, the physical therapist who worked on mums arm said Hello. Mum enjoyed seeing her - she is a lovely person and has gone up to visit mum a couple of times on the ward just to see how she is doing ......that's the difference at Roswell, there is a sense that you are "known" in the hospital and not just a number.
Andrew is in Buffalo now with mum and I am taking a break for a couple of days in Oakville . When I spoke to Andrew on the phone he said that mum had had another walk around the ward and seemed reasonably cheerful. Having Andrew with her in the hospital is great for mums spirits. It gives her something different to focus on . Andrew is a natural motivator and he is very good at keeping mum positive - that is important because I think her spirits were flagging a little the past couple of days.

It's lovely to see Colin . He misses his grandma but he is managing really well considering all the recent changes.

Tuesday, July 17

Tick-tock


36 days since mum came to Buffalo , 5 days in hospital , 16 doses of radiation , 2 picc lines , countless medications, many doctors and nurses ....... . It's been a long road to try and get her to the point where she can take a break . It's more of the same stuff today ....radiation, doctors and trying hard to get better . It's a struggle and mum is quite weak ......Andrew is arriving tonight from Vancouver and that will give mum a good lift . We are still hoping to get mum back to Oakville on Monday .
Happy Birthday Doug . He was meant to have his bypass surgery this week but it has been postponed for a few days .

Happy Birthday Colin !

Dear Colin ,
It's your birthday today . Twelve years ago during a heat wave I delivered an 8lb bouncing baby boy . You were so cute and adorable. It was the happiest day of my life.
I tried to go on the South Park website to get you something funny but the hospital Internet access blocked the site because it is "tasteless content ".......Oh well .... manged to get you something anyway. You used to like Barney , Scooby Doo and Thomas The Tank Engine . Things have obviously changed , now your tastes are a little more mature !!!
Your Grandma and I are so proud of you . We wish we could have been in Oakville to see you wake up this morning but we both send you lots and lots of love XXXX Mum is planning to be at your birthday dinner tonight and I can't wait to see you.

Monday, July 16

Night time again .....

"However long the night, the dawn will break "
African Proverb

The day started off OK with the Dippin' Dots for breakfast but that was probably the highlight of the day. The plan is to try and get mum back to the Doubletree (and home) as soon as possible . The problem is that she can only take very little by mouth and it is difficult to get enough oral pain medication to allow her to get off the i.v morphine . The doctor has doubled the dose of the pain patch and hopefully this will help. Unfortunately , her picc line become detached this morning and she had to get a new one re-inserted. This was very painful and when she came up to the room her arm was bleeding quite badly . The nurses were fantastic and ultra-efficient . They changed her robe and sheets on the bed quickly and and sorted it all out. Later on, we tried to go for a walk but it was probably a bit ambitious because she ended up coughing badly and feeling very weak and breathless. She needed a wheelchair to get back into the room. It was then back to trying to swallow the evening medicine , which takes forever - liquid oxcodone , Gelclair and Sucrafate .

It's dark in this room and a calm descends over the ward at night. The crowds are gone and so has the volunteer with the cute dog , the magazine cart lady and the whirl of activity . This is the lonely time .The time when it's quite apparent that despite everything that modern medicine can throw at mum and lots of support and caring she is essentially alone with this .

I wish I could take her place right now .

Sleep will help. It calms her body and mind and allows for the body's natural healing process to take over . I've given up saying that she's "getting better" . This is not a simple upward trajectory . the "tincture of time" is the very best remedy . I keep saying to myself ...patience Moira, patience....it's out of your control.

Monday

If you have'nt tried Dippin' Dots ice cream you are mising something. These are tiny balls of ice cream that are flash frozen in liquid nitrogen. It is light, creamy and totally addictive !
For the first time in days mum was able to enjoy a small tub of bannana flavoured Dippin' Dots for breakfast . It was a big achievement considering how little nourishment she has had recently . It's very important she continues to try and swallow because the artificial feeding raises her blood sugar to the point that she needs insulin .



Sunday, July 15

More energy to get into trouble !

"This is the day which the Lord has made; Let us rejoice and be glad in it"
Anyone who knows me would hardly describe me as devout but increasingly I am starting to rely on the belief that our days are predetermined and we just have to slot into a grand master plan . This whole notion is not an easy one for me to accept, but the ebb and flow of the recent days have made me stop and truly appreciate small victories and accomplishments .

Only my mother could go to the bathroom and get her hospital gown tangled up in the i.v tubes. I have no idea how to disentangle her . We may have to get some large scissors and cut it up ! She also forgets that she is attached to the i.v thingy and is in danger of yanking all the paraphernalia out of her arm ......this makes me very nervous !

She has started the tube feeding and already I think she has a little more energy. She's been moved to a new room (on her own ) which has an expansive view of Buffalo. The sunset is beautiful tonight and I hope that the dawn tomorrow gives rise to a better day.

A Parallel Universe

It's not getting much better for mum....but not getting worse either ..... overcoming this latest set-back has been difficult . Mum is very weak , but not seriously ill from this complication of the radiation. She has a good perspective and outlook . It's quite sobering when you see all the other people on this ward . A mother with colon cancer, a guy bald and anemic from chemotherapy and a large family assembled in a room where a woman is dying . There is an instant camaraderie with everyone here. As we walk down the hall, we greet the other patients and family members with a smile and a wave. Someone bought me up a coffee , another family offered a sandwich and someone else helped mum when her i.v got all twisted. We all know and understand the harsh realities of cancer treatment but this hospital has its own life force , separate somehow from the rhythms of the world outside. If it wasn't for the staff and volunteers, I think it would be quite unbearable. They obviously have a job to do, but they also bring a certain humanity and help to normalize a very abnormal setting.

We both have a "secret crush " on Dr Khushalani . He looked immaculate today ....wearing beautifully pressed designer jeans and a lovely shirt , he has a real aura about him . He feels , like the other doctors, that it is just a matter of time to get over this acute complication and mum will eventually heal. In the meantime, she is going to have enteral feeding through her picc line . This means that a special high calorie liquid will be given through her veins . Hopefully this will give mum a bit more strength as she is starting to rapidly lose weight and muscle tone . This will not really cause her any long-term complications , but artificial feeding will help to give her more strength and help her get better .

From the perspective as a family member ....feeding someone you love is instinctive and I knew that today was the last day I could watch my mother lie in the hospital bed with no food.

Saturday, July 14

It's getting a bit tiring .....

At first, the hospital was a bit of a "novelty " . We got to know our way around: The soup in the cafeteria is tasty , don't hang around the waiting room of the breast cancer clinic, go outside and listen to the music in the lobby , park close to the exit , lunch is good at the Doubletree, dinner a bit expensive , they have specials on beer and wine most evenings and check out the waiting room on the 6th floor , it has a gorgeous view of the lake and city .

Now ...... time is dragging . It's a long haul for mum. She's hungry but can't eat and there's nothing to do but wait it out .

Hospital Again

Mum is a bit weak . She has'nt eaten for ages and it is bound to make her feel lousy . The nurses want her to start trying to take Boost , which is a high calorie drink but she can't stand the smell of it and it makes her feel worse. Unfortunately, at this point, she has to either try and take the drink herself or they have to give her food by i.v.
The hospital today is quite busy. Mum has a roomate now . Her family and friends are also here which makes it a little crowded ! Having the internet access and a laptop is great .

Some worrying news today ..........

Mum's friend Doug is normally a very upbeat guy. They have had some great times together with more than a few adventures ! Since my mums latest troubles, Doug has had increasing problems with an ulcer on his foot (he is a diabetic) that has been slow to heal . It has been decided that Doug needs a leg artery bypass tomorrow morning at the hospital in Hamilton .
Our thoughts are with Doug and his family today .

Consiga bien Doug





Friday, July 13

Hospital Day One

Thanks to the pain medication, mum slept well last night and seems a lot more comfortable . It's frustrating though because she looks O.K , feels not all that bad ....it's just this horrible burning in her throat . She is being given Ativan before the Decadron which stops that lousy agitated feeling . It's been a busy morning of people coming into the room - The doctor who works with Dr O'Conner, the nurses, the person handling insurance (that is working great so far ) and the social worker . Without exception , everyone is extremely pleasant . Our nurse has been at Roswell for 39 years . That tells you a lot - about this place and the sort of people that are attracted to this kind of work .

Thursday, July 12

Night time in Buffalo

It's about 11 pm and I'm sitting with mum in the hospital room . It's quiet and surprisingly peaceful here . Poor mum is really in a lot of pain . She is on heavy dose of morphine, a pain patch , Decadron (again ) and Ativan and surprisingly ...she's still reasonably alert . She's comfortable as long as she doesn't swallow . She can't cough either and so the nurses have her breathing into a tube just to try and keep her airways clear . I don't feel too anxious though . She is well looked after and I think it is a matter of time - the radiation to that area has finished and now she just has to heal. Andrew sensibly reminded me tonight that we need to take it one day at a time , just focus on the immediate problem and not worry unnecessarily . I have a tendency to let my mind wander to the "what ifs " and it was good to chat to him about my concerns. The fact that mum has had very little to eat is not a big deal ....she'll hate me for saying this .....but it's not as if she is that slim to begin with .....She has a few pounds in reserve !!!!!

The hospital is completely different once the sun goes down. It is located in a rough area in downtown Buffalo and in order to get inside after 9pm, you have to buzz security . They will drive me to the hotel and/or escort me to the car in the parking lot once I have finished visiting mum . The streets are mainly deserted and it's quite an strange atmosphere being out at night . It's not as if there are any weird people lurking around - I've seen much worse in Toronto ,but the depressing thing about this area is that the downtown core of Buffalo is largely vacant despite a recent economic resurgence . The big medical campus is quite obviously a major player in terms of the economy but there's not much else here. Despite the obvious economic woes , the people are warm and friendly . The community here in downtown Buffalo (predominantly African American ) is more vibrant in some ways than its uptight neighbours to the north and I am really getting to appreciate this unique city .

I'm just glad this day is over and mum is settled . Despite the fact she is in some pain, she looks reasonably well and strong.

Hospital Food (not )

Mum is really feeling crummy. There's nothing going in apart from an i.v . She is not really improving and is getting quite weak. We are still trying to have a laugh - I patted her arm "reassuringly" trying to be Florence Nightingale and she pushed me away and told me to "stop that immediately"! We could'nt help laughing , but then it started another choking fit and poor mum had to just lie back and rest. This is awful . Roswell can set up visiting nurses to flush her pic line at the hotel and give her i.v fluids, but I am concerned about how she will manage over the weekend as she can literally not swallow .

* Update . We have spoken to Dr O'Conner and the feeling is that mum needs higher doses of pain medication delivered by i.v and hydration . Her "official" diagnosis is "radiation induced esophagitis" . She fortunately has a bed available on the 6th floor of the hospital which is a relief .

Wednesday, July 11

A Rough Day !

Unfortunately mum had a very rough day . She not only has thrush in her mouth, she has an inflamed throat and esophagus from the radiation. She is basically unable to eat or drink anything . Dr O'Conner wanted to admit her into the hospital but there were no beds available. Instead, she spent the day in the clinic receiving i.v fluids . This will go on until Friday or until she can start drinking enough to avoid dehydration.
She's got a PIC line inserted which is a long flexible catheter inserted into the vein that makes it easier to put in an i.v.
Mum is now spending the night in the hotel tucked up in bed and seems to be better . She managed a couple of bites of chocolate and some apple sauce and hopefully tomorrow will be a better day. Thursday is day #3 of the pelvic radiation and lets hope that she is spared too many side effects from that . The main side effects we have been told to expect are nausea and an upset stomach . So far she seems to be O.K and possibly the fact that she is eating so little is not necessarily a bad thing right now . She was planning to return to Oakville for the weekend and attend a wedding on Friday night. Unfortunately that looks very unlikely and she will probably stay at the Doubletree now until the end of the radiation .

It was'nt a good day again for mum. The thrush is extremely uncomfortable and she is barely eating or drinking . She has stopped the Decadron completely though and this should help sort things out. The radiation is a lot more extensive now as they are radiating the hip and spots in the pelvis and sacrum. The radiation today took about half an hour as they had to do the necessary adjustments to ensure that they are precisely pin-pointing the problem areas.
After lunch (custard) mum took extra pain killers and tried to sleep . I returned to Oakville and picked Colin up from his Dad's house. He was pleased to see me and full of his usual chatter. He was desperate to spend his birthday money and so I ended up dragging around the mall . It was'nt the greatest evening and I felt tired and irritable, mostly worried about my mum back at the Doubletree.

I had plenty of time in the waiting room today and started thinking about the whole notion of being a "survivor" . This typically means someone who has lived five years or more from the initial diagnosis of cancer. In my mothers case this would mean she is an "uber-survivor" three times over as she was originally diagnosed in 1992. Instead of the word "survivor" , I have always preferred the word "thriver" which implies that an individual can live a productive and positive life in spite of their illness and possibly with alternating periods of active disease and remission. I picked up an interesting article in Heal which featured Julia Rowland ,Director of the National Cancer Institute's Office Of Cancer Survivorship. She discussed the concept of "optimal care" which is care as she describes it that "allows you to minimize the costs of survival (physical, emotional,social, economic), maximize your health outcomes and enable you to be as successful as possible in achieving your goals in the conext of this illness. It makes available to you the resources you need to do this,and gives you hope and meaning for a life beyond your illness and treatment "

As I mentioned yesterday , "optimal care" is what I believe my mother is receiving right now at Roswell Park and in particular the radiation oncology department is at the forefront of this approach. The radiation cannot possibly treat every area of disease in my mothers body and at the moment they have focused on the two areas that have the potential to be the most problematic. The goal of this treatment is to allow her to be reasonably active and pain free - a cancer "thriver". Of course, no one can predict the future course of her illness as the epidural disease is largely resistant to chemotherapy, but for now they feel that they can achieve good quality of life hopefully in the long term . There is no perfect scenario , aside from my mum making a spontaneous recovery, but in the absence of that, there is plenty of room for optimism.

Attitude is an integral part of coping with cancer and my mother is unbelievably stoic. I have hardly heard her complain . Like everyone, she gets anxious and churned up , but there is a mental toughness about her that allows her to see beyond the present trials and tribulations.
I may feel a bit weary right now with everything that has gone on, but my mum is the one that is enduring this with courage and fortitude.

Tuesday, July 10

I wish I had studied harder at school !

I don't have a scientific mind. Radiation is extremely technical and precise and I just have to try and grasp what I can and try to ask lots of questions even if they seem "obvious".

This time around, the radiation will tackle the right hip and pelvis. According to her MRI there is "Patchy involvement of the lumbosacral spine with extensive metastatic deposits and involvement of the posterior elements, as well as the medical portions of the iliac bone and sacrum.
The doc outlined for us the two areas that are important :the possibility of hip fracture and some "encroachment upon the right S2 neuroforamen ". I did'nt quite understand what this means but I can try to explain ......


The sacral spine has 5 (fused) vertebrae (S1-S5) and the sacrum is the triangular bone at the base of the spine formed by these five vertebrae wedged between the two hip bones.
Spinal nerve roots shoot off from the spinal cord and exit the spinal canal through the neuroforamen. These spinal nerve roots branch out to form an intricate network of nerves outside of the spinal canal called the peripheral nervous system. When the size of a neuroforamen is reduced, there is less room for the spinal nerve, which may cause nerve compression. Symptoms of nerve compression include pain, stiffness, numbness, tingling sensations, and/or weakness. Dr Killian explained that if this was left untreated, my mum may have problems with her bladder or bowels and it was important to try to treat this area aggressively .

I will probably try to edit this post as I become more familiar with this stuff but for now, it's the best explanation I can come up with ..... In simple terms , she's got pain in her hip and pelvis and it needs to be fixed .Precise and extremely carefully planned radiation will hopefully try to resolve the issues - they may not be able to "cure" but they can hopefully stop this in its tracks .

These medical professionals here do some incredible , technical work that just blows me away . They smile at the patients, the appointments run on time and you have every opportunity to talk and ask questions . This is a very special place. Dr Prasad is a very friendly guy and the other two Docs- Dr Mclaughlin and Dr Salerno make you feel like they have all the time in the world for you ! Joyce Martin is a radiation tech that has been at Roswell since 1975 - that must say something about the team . We are greeted by name, the techs say hello to us in the cafeteria if they are picking up their lunch too and a "goodbye" at the end of the day . This is simple , human dignity and I cannot adequately express how much that means to my mum . She's treated as Celia, a person, not a "patient" or a "case " . Mum , with her typical under-statement ,said she felt "lonelyish" when she was getting tattooed for the procedures and lying on a hard X-ray table , but she felt secure in knowing that the the people in the room were both kind and considerate. It took the edge off her anxiety and we even managed to take a drive out to East Aurora for dinner and a wander along it's prety Main street . It was a good break from the Doubletree.

Monday, July 9

"Miss Polly had a dolly Who was sick, sick, sick,
So she called for the doctor To be quick, quick, quick;
The doctor came With his bag and his hat,
And he knocked at the door With a rat-a-tat-tat.
He looked at the dolly And he shook his head,
And he said "Miss Polly, Put her straight to bed.
"He wrote out a paper For a pill, pill, pill,"
That will make her better, Yes it will, will, will!"

Phew !

We heard from the doctor that mum does'nt need surgery on her hip , just radiation . This is excellent news because it means that if everything continues to go well, mum will just have a course of radiation lasting for two weeks on her hip and then she will take a break and go home . She only needs to return to Roswell for the Zometa infusion and appointments with the oncologist. This is a big relief because now mum can start to focus on more positive things . Much as we both like Buffalo and the Doubletree, it is great to feel that mum is moving along with her treament and things can hopefully get better.



Village Of East Aurora Monday Night

Last Day of radiation - for now

Its been another rough day. Mum has very severe thrush all down her throat . It makes eating or drinking extremely painful and she a bit dehydrated and has a mild fever .The doctor has put her on another medication and we are hoping that will do the trick .
She finished radiation on the spine today . That felt good and she was pleased - the radiation technician gave her a hug .
The small victories are so important and make her feel like there has been tangible progress.

Late night ramblings

I left Oakville late tonight and drove along the highway to Buffalo . The familiar landmarks and distractions - Hamilton, the vineyards at Jordan , the turn-off to Ridley College, the Niagara river and the Peace Bridge were not visible. It was just me , the radio and a dark road.

I started thinking about my own diagnosis of ovarian cancer in '97. I didn't fully recover for two years and it was a horrible , bleak time of my life . My mother didn't go hysterical on me - that would have probably obliterated what little sanity I had left .She just made herself completely available , despite the fact that I wasn't particularly appreciative or nice to be around. I knew however,without discussion ,that she would give up her life in England in a second and be there for me if I needed her. Looking back, understanding that I had that kind of support was almost like a suit of armour . I could be brave knowing that I had extra protection and a safe haven . I knew that if it all got to be too much , I could just hand everything over to my mother and she would assume my load . I couldn't escape the realities of my disease , but I don't remember being afraid.

Saturday, July 7

Insurance (Rant )

"How would American cultural life be if so many of our talented and creative people weren't worn out by their day jobs with benefits? Would vapid, commando starlets still rule our cultural discourse, or could we become a culture defined by ideas instead of the easy sell?" Rednecked Mother

Every single day, my mother gives thanks for the fact that she has health insurance। Due to the fact she is not a landed immigrant into Canada (that's a long story ) she is not eligible for the free public health care. Fortunately , she has excellent medical insurance which covers 100% of her cost of treatment. The insurance company people are lovely to deal with and maybe I am naive, but I get a sense that they really CARE about my mother and are doing everything they can to facilitate her treatment at a top notch medical facility like Roswell Park . Yesterday she was an hour with her physical therapist going over all the various options available to her for lymphedema. Her outstanding , compassionate therapist (all the people in that clinic are great ) has managed in a little over a week to get the swelling in her arm down by 97% . This is no small achievement.

There has been a lot of discussion recently about the new Michael Moore movie Sicko. This movie cleverly satirizes the national disgrace that 45 million people in U.S have no medical insurance. There's also a huge number of people that are under-insured and stand to lose their homes and assets if they ever find themselves dealing with a major illness in their family . There are the obvious points to be made about the fact that America is the only industrialized country in the world that fails to address the health care needs of its citizens , but what I find a fascinating argument is how potentially the national character of the country could change if it tended to its most vulnerable citizens .

Just imagine if a writer , an artist an athlete could freely work without concerns about being completely wiped out by a major health catastrophe. Just imagine if my blogging friend Liz over at "As The Tumour Turns" was able to get proper health care .

"try being over 50, self-employed, low-income, with several preexisting conditions, and see if you can afford the skyrocketing premiums. And then there's the whole mess of being underinsured. Even if I'd been able to afford to hang on to the shitty little health insurance policy I had managed to qualify and pay through the nose for for five years until 18 months before I got sick, it wouldn't have covered more than maybe an eighth of my cancer expenses. I would still have ended up bankrupt."

Liz needs a few bucks to get through . If you are in the market for some interesting reads, check out her business website Deep Inferno Trading Post .

Instead of feeling glad and fortunate that we enjoy a completely socialized , standardized health care system in Canada, I am finding myself "sicko " about the whole awful situation in this country. Roswell Park is not in the best neighbourhood of Buffalo. You don't have to drive too far to see grinding poverty , broken down houses and teenage mothers pushing strollers. What happens to their kids when if they have appendicitis ? What about the mom who has diabetes or the grandma with breast cancer? Even if you are fortunate to be middle class and have some sort of medical insurance, the co-pays and deductions might wipe you out .

There's something seriously wrong with the national psyche of a country that can wage a useless four year invasion of Iraq , sink billions of dollars into a campaign that was doomed to failure right from the beginning and not provide the basics of good health care for its citizens. Yes, I am incredibly grateful that my mother is receiving the finest care that America can offer , but we are both haunted by the faceless, nameless other women with the same diagnosis of mum that may be on the verge of financial ruin because they had the bad luck to get sick.

The Americans need to stop this ghoulish, disgusting obsession with celebrities and start focusing on a truly national debate about the sorry state of access to health care in this country .

I highly doubt that Fox News and CNN are the ones to do the job ! It will take millions of citizens rising up to demand a better deal from the government . There are some hopeful signs . FOr example, I aplaud the efforts in California to establish Healthy Families which provides medical insurance to all children who do not have health insurance and do not qualify for the public insurance medi-cal .

Innovative programs like that need to be available to every citizen.

I'm off my soap box now . Thank you for listening to my vent and good night !

Friday, July 6

No News is good news ?


As predicted, Colin was his usual happy self and mum thoroughly enjoyed having him around.

We had lunch at the "Cheescake Factory " at the Walden Galleria and the only way to describe this place is a gastronomic orgy ! We had to have the "world famous" cheesecake of course and it lived up to expectations . Mum's throat is still very sore but she was very easily tempted by a huge slice of caramel cheescake and whipped cream !
It's part of North American culture to go and wander around a mall for an afternoon with no specific agenda. It's climate controlled, sanitized and cheerful and is visually appealing. There's no traffic to navigate around, no trees , no litter and no "undesirables" as presumably they are all moved out by mall security .

I have to admit, I have always been slightly "snobbish" about the whole concept as I am one of those individuals that enjoys the diversity of urban life and prefer to frequent small stores as opposed to the huge "big box" monoliths. However, we have both been pleasantly surprised by our little outings to the mall. There are some unique stores , the people are incredibly friendly and the whole experience just "works" . It is a stress free outing that gives us a much needed diversion from the hospital .

Colin and I are leaving tomorrow. Mum needs a couple of days to herself to read, rest and relax. The orthopedic oncologist has not decided about the surgery yet and we have to wait now until Monday . His assistant just stressed again that mum needs to be extremely careful not to put strain on her hip. She feels that mum needs to have a walker but recognized after only meeting mum once, that she would NEVER agree to that ! Colin and I managed to persuade mum to get into a wheelchair to go around the mall . She is not too happy about the idea but is actually surprisingly compliant . Colin loves to push Grandma around and is becoming the expert navigator.

Thursday, July 5

Life Truncated


" Life can be found only in the present moment. The past is gone, the future is not yet here, and if we do not go back to ourselves in the present moment, we cannot be in touch with life" Thich Nhat Hanh
Mum had a bad day today . She has a very severe case of thrush in her throat . It is a side effect from the radiation and Decadron . . She had her CAT scan this morning and she was'nt able to swallow the horrible white stuff that is required before the scan . It was a real ordeal . The doctor prescribed Clotrimazole which will hopefully clear everything up. She's had a hard time drinking anything and can barely talk . Today for the first time I have felt that mum is "sick". She's weak and tired and the cumulative effect of radiation is really taking a toll on her body . She's decided to stay in Buffalo for the weekend instead of going back to Oakville. Even the relatively short drive is too much for her at the moment .
This is about hour to hour and day to day . Mum has no choice - she's got very little strength left. She is not very social right now and seems almost withdrawn. Usually she's a very busy , active person but she's been forced to slow right down , almost putting her life in suspension. There's no expectations and no specific plans . Just getting through the day takes a huge effort, physically and emotionally . There's no extraneous expenditure of energy and it seems to me as if all her resources are focused only on healing and ultimate renewal .
Colin returned from Vancouver tonight and I suspect that he will be able to infuse some of his vitality to his grandma tomorrow. He's a very caring child and I think he senses that she is depleted at the moment . Illness can be a profoundly isolating experience and Colin , like her other grandchildren, create joy as well as a sense of family and connection .This is a critical part of recovery and and hope. Fortunately, mum has that in abundance.

Wednesday, July 4

Happy July 4th

Back to Oakville today and I am hoping the Peace Bridge is not too busy with traffic. Finally getting the mini fixed and then return to Buffalo with Colin . Mum is hanging out at the Doubletree and Doug will be joining her overnight.

Starting too get a bit anxious now about surgery . Its a big undertaking and , if I use my analytical brain ,we have to hope mum is on the positive side of the risk/benefit ratio .

Or , as we are in sight of the Niagara Falls Casino, do we just ask "Lady Liberty" for some luck ?

Tuesday, July 3

Getting To The Other Side


We are so fortunate that mum is being treated by a lovely oncologist Dr Tracey O'Conner. She is unfailingly polite and kind and even though the appointment was two hours late today and the clinic was frantically busy .You would never know - she is completely calm and attentive. I asked her what time she would get home tonight to her own kids and she doubted it would be before 7pm. Apparently, her son knows and understands that mom looks after the "sick ladies". We certainly appreciate "mom " AKA Dr O'Conner and all the other moms that work at Roswell .

Things are looking OK. Her blood work showed that her white blood cell count was a bit high and there were some other things that were "off" on the bloodwork - RDW, Lymphocytes and Neutrophils were abnormal Glucose was a bit high , Calcium and protein a bit low, Alkaline phosphatase and BUN / Creatine high ....... phew ......its all a bit complicated . What I found most ironic was that the CA 27.29 , a tumour marker used to detect recurrence of metastatic breast cancer was normal . Her CEA , another cancer tumour marker was elevated however. The CEA is most commonly used to monitor cancer of the gastrointestinal tract.

We're both tired and a bit fed up . The "novelty" is starting to wear off - the only thing now that will help is to go to the mall !! Somehow I tend to end up carrying my mums walking stick and she wanders off leaving me in the dust ! I gave her strict instructions this morning to wait for me in radiology and guess who I saw disappearing into an elevator totally ignoring me ???

Maybe she is getting back to normal ? She's got many rivers still to cross , but for now , she's making her way.

Doubletree Discussions


"I wonder whether those who object (to animal testing) to finding a higher solution for a major health problem would prefer to see a women continue to suffer and die from breast cancer rather than accept the use of any form of animal experimentation, which appears to us essential for making any real progress in research on this disease."


K.K. Caroll Former Director of the Centre for Human Nutrition, University of Western Ontario


There's a real cast of characters at the hotel . All we need to do is go to the bar, sit at a table and we end up chatting to everyone. Our waitress works at the Doubletree but is employed also at the animal laboratory at the hospital. While I would prefer that experimentation on animals was not part of scientific research I recognize that progress in the fight against cancer and other serious diseases have used animals as part of the research process.
However, I was sad to find out that there are 1,300 chimps - many of whom were captured from the wild- living in laboratories in the United States. Only Japan, Liberia and Gabon still use chimpanzees for research . Not only are chimps an intelligent and social animal, they are also highly endangered. Fortunately, a new chimp sanctuary, "Chimp Haven " has opened in Louisiana. This provides a sanctuary for chimpanzees retired from medical research, the entertainment industry or those no longer wanted as pets.
I nervously asked our waitress what sort of animals were held in the lab, I was relieved to find out that they had mice , rats and a solitary groundhog - no large animals (not that this makes any difference apart from soothing my sensitivities ) and animals were only used as part of an experiment for 15 days.

While there are some harsh realities associated with medical research . I wonder if there are some alternatives ? Lung cancer and cigarettes is a sad example of failed experiments on animals. . Years spent feeding or injecting animals in the labs with tobacco derivatives or forcing them to inhale smoke, were unable to 'demonstrate' a cancer "link ". This allowed the tobacco industry to deny any causal association between smoking and cancer for many years and undoubtedly led to thousands of additional deaths.

The truth is that despite the many arguments opposing animal research , I do not take the moral "high road" . If there was a treatment out there that could potentially help I would eagerly embrace anything that could buy my mother time or add to her quality of life . Maybe somewhere there is a scientist in a lab right now that is on the verge of making a connection , a process or a procedure that could help my mum. How I wish that was true .......

Medical Update


Today we had the appointment at the office of the orthopaedic oncologist . We didn't see Dr Mcgrath , but had a consultation with his assistant , Robyn Rice. She explained to us that there are two immediate areas of concern - in the actual hip socket and also further down the thigh bone. The lesion in the femur measures 2.5x2cms and there is concern that mum is at great risk for a fracture. We will know by Friday if mum will need surgery and assuming she will need surgery, we will also find out what kind of surgery is recommended. She may need a total hip replacement and/or a rod for stabilization . After surgery, she will need to go to a rehab floor of the hospital for physical therapy and then "focal " radiation to zap any other pesky areas. She also suggested that mum uses a cane at all times to reduce pressure on the hip and give her more stability . We drove straight over to a medical supply store and picked one up. Its not exactly "pretty" but it does the job and I certainly feel happier. This is not the time to be "independent" or "stubborn" - mum is very fortunate that she has not had a fracture already given the state of her hip .


Sunday, July 1

Good Weekend

We had a good weekend. I was finally out of my house , the weather cooled off and it was time to take a couple of days to relax.On Saturday, we went to Marilyn and Janet's home for a wonderful meal served under their pergola in their gorgeous Japanese style garden. As well as mum and Doug, the two Jims, Cindy (Doug's daughter) and Maureen were all there. Thank you Marilyn and Janet for a very pleasant evening. Today , it was a Canada day barbeque at Doug's condo. Mum told me she sang "Oh Canada" with a little more fervour ....her immigration is still stuck in limbo. Perhaps if she sings loud enough, some government drone will hear her !

Colin and Janet in Manzanillo

We miss our boy !

Colin comes back on July 5th. He has had a wonderful time with his cousins, Uncle Andrew and Aunt Hilary but we are missing him.
Sometimes he thinks we are both totally unreasonable - "Oh Grandmaaaaa " or "Mum , noooooo " , but he is the best 11 (nearly 12) year old boy there is . We love you Colin and look forward to you coming home .

Mum and Grandma