Jude Penney -- Remembering Mom

 

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The 10 Year Journey Begins

In Jan. of 1996....I started noticing blood in my stool more often....as well....my bowel habits had changed. They had increased in number. In fact....it seemed that after eating anything....I would have to have a bowel movement. I had also lost some weight. I made an appt. with a highly recommended G.P. in Ontario.
We discussed the blood in the stool....my weight loss....my changing bowel habits and my overall health history. I had attributed my weight loss and changing bowel habits to the stress in my life at the time.....which included starting a new business... A health food store was the "new " business and of course I was experimenting with a lot of different grains...and other high fiber foods and thought that perhaps this would explain the weight loss as well.
This family physician saved my life.....my life has been saved countless times over the years....but it all started here with this first visit . He said because of my delicate age....it would be in my best interest to have this followed up with a specialist, a gastroenterologist/surgeon....An appt. was made for Feb. My family Dr. had seemed concerned about my weight and he did mention that perhaps the bleeding could be from hemorrhoids....but I'm very fortunate he made the educated call that he did and wanted it followed up with a specialist.

I spent 45 minutes talking to the specialist...symptoms....history etc. There were 3 options available . A Barium Enema....a Sigmoidoscopy....or a Colonoscopy. He did not think that I had Colon Cancer. I know that ! He suggested we start with the least invasive of the procedures....the Barium Enema. It was performed and it was " normal ".

On April 1st. 1996....I had a Sigmoidoscopy....the second least invasive procedure. Bingo !! He had no sooner started the procedure when I heard him talking to the nurse about a needle biopsy. He had found a growth. I was very drowsy from the procedure but remember him saying that regardless of what the biopsy turned up....benign or malignant....that growth had to be surgically removed. He expected to have the biopsy results in a few days.

On April 4th....1996....He called me at home around 9 o'clock in the evening. It was Thursday night of the long Easter Weekend. I had been out for the evening and had just returned home. He very directly got to the point of the call which was to tell me the biopsy results came back and I have cancer.
Everything else he said after that faded away.... All I heard was Cancer. I just wanted to get off the phone....call my family and go to bed.

Treatment:

On April 30 – 1996 – I had the operation. They didn't know until they operated if a resection of the colon would be possible or if I would have to have a colostomy.

I was lucky. He was able to do a resection...however...the tumor had penetrated the bowel wall. The diagnosis was Dukes' Stage "C" characterized by cancer that has spread to the lymph nodes.

2 out of 10 lymph nodes tested positive for cancer.

Adjuvant chemotherapy and radiation is the standard treatment approach for Stage 3 Colorectal Cancer.

Honestly....from the time I received the news on April 4th....a part of me kept thinking that they had made a mistake and that I would be getting a phone call any time now informing me of that. I guess that's the denial stage.

From July 1996 to Dec. 1996, I took part in a clinical trial. My treatment was 6 months of continuous infusion of 5FU(5-fluorouracil) via a "port-a-cath" as well as 6 weeks of Radiation Treatment in Hamilton. 5FU has been the standard treatment for this cancer since 1957. It was an all consuming 6 months. Weekly visits to the hospital for blood work and chemo...as well as the daily trips to Hamilton for 6 weeks of radiation. I was able to continue working. Thank God...because that is the only thing at the time that made my life seem normal.

On Dec. 18th. of 1996 the port-a-cath was removed. Treatment had finished. That is never the end after a cancer diagnosis. For me, It was the beginning of an introspective journey that eventually washed me up on the shores of English Bay...Vancouver and a renewed love affair with life !...but there were a lot of dark times ahead in the next couple of years before that would happen.

In the 3 years that followed diagnosis and treatment...what I thought was a solid marriage of 32 years had shattered like " handle with care " fragile glass. I don't think either one of us saw it coming...but cancer challenges the fundamental dynamics of relationships. Some get stronger and others...well...others don't. My business had also failed and I had to walk away. In February of 1999....a week after I had been for a routine check up....blood work and x-ray...I received " the call " that there was something suspicious on the x-ray and they wanted me to come back for a CT Scan. I had done my homework on this disease and knew what the prognosis would be if it metastasized. 12 to 18 months was the norm. I was mentally and emotionally prepared for the day as I sat waiting to speak with my oncologist about the results of the CT Scan. Even without a word being spoken....It was an ominous sign in itself....when the door opened and not only the Dr...but his nurse assistant accompanied him. This never happens. Never ! She was obviously there in case I needed help in dealing with what he was about to tell me. That wasn't the case at all.

I knew exactly what he was going to say. I just wanted it said..so I could leave and go home and pour a glass of wine and get on with my life. His news was that the cancer had metastasized to the lung. No treatment was offered because nodules were found in both lungs and surgery was ruled out. If there had of been one single nodule...surgery might have been an option...depending on the location of it. He delivered the one year to 18 month prognosis. I left. Over the next couple of months...it was obvious that any attempt to reconcile our marriage had failed.

In July of 1999, I made the decision to leave Ont. and drive out west to BC with a friend who was moving back to Vancouver....I planned to spend time with my sister and niece in Victoria and just see where life would take me. I gave up my apartment....I left my furniture and " things " spread out all over Ont. at my family's homes...got in a little Red Miata and hit the road for BC. I had no expectations whatsoever....about anything. I felt " empty " . My cup wasn't half full or half empty....by then it felt completely empty. Starting Over

When I arrived in Vancouver in July of 1999...I felt like I had come home. How is it possible that a place so unfamiliar can feel like home ?. I didn't just see the mountains and the ocean...I felt them. I settled into this charming seductive neighborhood in the west end of the city. I liberated myself from needing a vehicle to get around...instead, walking or busing get me everywhere I need to go. I loved the mild winters. The year round outdoor markets with flowers that seemed to smile at you as you walked by. An eclectic mix of people and cultures and smells and tastes...a smorgasbord of life without leaving your neighborhood. I came for a visit and 7 years later I'm still here !

Between August 1999 to the present time, I am under the care of an oncologist at the BC Cancer Agency. The disease is monitored by blood work and x-rays. The first visit showed that there was no significant change in the size of the tumors...but there were more tumors ! They were now in both lungs. 1 in the left bottom lobe and 2 in the bottom right lobe. However...I continued to feel quite well and was feeling hopelessly...spiritually in love with life. Like seeing and feeling everything for the first time...like what it must be like through the eyes of a child. This had nothing to do with any external relationship. This had to do with what was taking place within...an awakening....A euphoric heightened sense of everything around me. I began running...hiking and mountain climbing...I joined the coffee culture of my West End neighborhood. I couldn't wait to wake up in the mornings to start my day. I often felt myself walking down the street with a Mona Lisa smile...content and very much at peace. The disease wasn't taking anything away from my life at this time. it had given me a new appetite and passion...and I was thriving on it.

Around Feb of 2002...It was suggested by my oncologist that we should re-consider surgery. 3 years had passed since the disease metastasized and now surgery was an option. In preparation for this, I had both a colonoscopy and a pet scan to be completely sure that the cancer was contained to the lungs.

On April 3rd - 2002, I consulted with a Cardio Thoracic surgeon. There were to be 2 surgeries...starting with the removal of the bottom left lobe and followed by further surgery in the right lung after recovery from the first operation which they estimated to be 4 to 6 weeks.

On May 9 – 2002 The surgery to remove the bottom left lobe of my lung was performed at Vancouver General Hospital.

My follow up appointment on June 26th. - 2002 with my surgeon ruled out any further surgery. A recent CT Scan had revealed more cancer in the right lung and more surgery would severely compromise my lung capacity to the degree that it was no longer an option.

I recovered from the lung surgery after a couple of months. Regained my strength. Recovered from the emotional blow that any chance of a cure was now out of the question and I continued to feel quite well until July and August of 2003. I was able to get back to running, Not as far...not as fast...back to hiking shorter distances...but still very much in love with my life. During the summer of 2003...I started to feel easily fatigued. I experienced upper abdominal pain and vomiting from time to time...but would always recover quickly from the episodes.

That all changed On Sept 3rd.2003. I woke up and caught a glance of myself in the mirror...I was very jaundiced. After stripping down I saw that my whole body as well as the whites of my eyes were yellow !

I immediately called the Cancer Agency....they arranged for an Ultrasound the next morning – Naturally I assumed that the cancer had spread to my liver. The technician doing the Ultrasound told me that it looked like a gallstone was blocking the bile duct and that was causing the jaundice. Another technician was called in to have a look and confirm her findings.

They were both wrong !

On Sept 15th. I had the first of what would turn out to be 25 to 30 ERCPS . ( Endoscopic Retrograde Cholangiopancreatography) . An ERCP is a procedure which uses an endoscope to see the inside of the stomach and duodenum, dyes are injected into the ducts in the biliary tree and pancreas so they can be seen on x rays. In my case they found a stricture in the common bile duct and a plastic stent was put in to help keep it open so that bile could pass through. There was no " gallstone " A biopsy of the bile duct revealed a further spread of the cancer. Over the next 2 1/2 years. My gastroenterologist would become my primary caregiver. It's these procedures that saved my life and are what is keeping me alive today....that and of course the FORTRESS of family support I have and my continuing love affair with this very special place on the planet...and the life style that has nurtured me for the past 7 years.

He told me that generally plastic stents would last for approx. 6 months and would have to be replaced. He also told me about an expandable metal stent that was guaranteed for 1 year...but could present considerable complications...like tumor overgrowth if they were left in any longer than that. They are mostly used for pancreatic cancer patients whose prognosis is so poor that they're not considered likely to survive the year following diagnosis.

I wasn't ready to re-join the 1 year to live camp. I opted instead for the plastic stent. I didn't know of course that in my case I would be lucky if one lasted 2 months...let alone 6. From Sept. of 2003 until the present...There were countless infections...visits to emerge...hospitalizations...and more chemo. It was the start of becoming a chronic patient. There were several times when ERCP'S would have to be done on a weekly basis.

I had to say goodbye to the running and the hiking...but not the walking !!! Never the walkng !

On Nov 10 -2003 – I started back on chemo – I had a new oncologist...an old drug...5FU...in a new oral form and with a new name...Capecitabine. I also had hope. Hope that once again the chemo would work. It did. I have taken it on and off every since...usually for a 5 month stretch at a time...2 weeks on and 2 weeks off with very little side effects. After a 5 month period...they would give me a few months off....usually 2 or 3 before restarting. It would all depend on my tumor marker...Cat-Scan and X-Ray results and my general overall health as well as how I was tolerating the side effects of treatment.

In July of 2005 – A CT Scan revealed 10-15 further nodules in the right lung varying in size from 5 mm. up to 1.3 cm. situated in the upper and lower lobes. Left adrenal gland is calcified and there is a 1.3 cm. lesion in the upper aspect of the gland.– – Tumor marker is up to 16 –

Chemo resumed and all was well up until Jan. of 2006.

2006
10 Years:


I was doing fine until around the middle of Jan. Between Jan. 11th. and March 24th...I had 4 ERCP'S and almost weekly visits to emerg...as a result I lost 10 most needed pounds.

On March 24th....I had a metal stent put in. No more plastic. The procedures over the past 2 1/2 years had worn me down and I was desperate to try something else. Enough is Enough.

Metal Stents are considered to be permanent....if occlusion continues to be a problem as it was with all of the plastic stents....a procedure where they insert a plastic stent in the middle of the metal stent to keep it open will be performed.

March 30th
My blood work showed the Tumor Marker at 20 – The highest it's ever been. I had been off chemo since Jan....initially to give my body a break from it...but the complications of multiple stents and hospitalizations had prevented me from re-starting chemo anyway.

I started back on chemo on March 30th. I'm hoping that the metal stent will stabilize my health to the point where I can continue on treatment. My weight is at its lowest at 88lbs...I don't know if this is because of the cancer or the complications over the past few months with ERCP'S..or both. Again...not my family Dr., my gastroenterologist or my oncologist have been able to say with any certainty that it's one or the other. I'm sure as time goes on...particularly in the next few weeks...it will become evident what is happening.

My appetite is good..but I have far too many bowel movements to get the nutrients I need from the food to put the weight back on. If It wasn't for the fact that I just had a colonoscopy a few weeks ago..I would bet that the cancer had returned to the bowel. The symptoms I'm having right now are the same as they were when all this started....except there is no blood in the stool.

I have to admit my spirits are a little down due to the fatigue of bathroom visits and the distressing weight loss etc...I'm working on both of those issues !!!

My lifestyle is very different these days....and I'm slowly...finding my way to cope with the limitations the disease has put on me for now. I haven't given up hope !

I'm still waiting for " a new and improved drug " .

Thank God my passion in life is for simple things....like reading and music...talking to family...and short visits with friends. The disease doesn't prevent me from enjoying any of those things...and I still feel humbled and in awe by the beauty of my surroundings...the flowers at the markets still smile as I pass. Some days I smile back...and other days...I'm just glad they're there.

Another appt. with my oncologist on Thurs...April 27th. Will have an idea if the first round of chemo is working again....or not ! Hoping to get some insight or ( an educated guess )as to what is causing all the BM'S.

April 27th.
The good news today is that my weight has stabilized at 88. My Oncologist told me I looked " well " . Very uplifting words. He thinks my BM'S are from the chemo and he wants me to continue on and just take Imodium to try and slow it down. My blood work was fine..although he didn't have the tumor marker results back yet. I see him again in 4 weeks. This was a good day!

Another new symptom has developed since February...I have considerable weakness in my right leg as well as knee pain. I discussed this with my oncologist around the beginning of April and was told that the pain was a result of the weight loss and that I should do " squats " to strengthen my knee. It sounded like good advice..it made sense and of course I came home and started on my squats immediately and did them diligently every day until yesterday May 11th.

I also saw my family doctor last week and after examining my legs...supported the oncologist's " educated guess " that it was indeed a knee problem and that I should continue with the squats. I let another week pass. The squats weren't working and my leg pain and difficultly walking was getting worse by the day. I made another appt. with my family Dr. to discuss this yesterday. I was quite concerned about the possibility of a fracture. It's all making me feel extremely fragile.

He did an x-ray of the knee and said it looked normal. He's also setting up an appt. for a bone scan to rule out metastasis of the cancer to the bone...He told me this type of cancer normally doesn't go to the bone...but nevertheless we would go ahead and do it anyway. In the meantime...he wanted me to get some physiotherapy to help me with the proper exercises to rebuild my leg.

So....today May 12th.
I've added another care giver to my team. A physiotherapist. I just got back and must say it was a very very enlightening experience.

After putting me through a series of " movements " . She said without any doubt that this was not a knee problem. It is a HIP problem. She also said I could tell you what I think is causing it...but I won't. I would rather wait for the bone scan. Well...I'm quite glad she's didn't tell me because quite frankly...I don't want any more opinions until all the test results are in.

She gave me a program of stretching and strengthening exercise to do every day and wants to see me again next Friday. She also sent me to the pharmacy to buy a cane....she said the way I was walking was going to eventually effect my back.

The cane worked out great. It's allowing me to walk upright and I feel more confident out and about with the support it's giving me.

She wants me to keep walking....thank god !!

May 15th

Just got a call about the bone scan...It's scheduled for Thurs..the 18th. So, I should know by early next week what's up. Will keep you posted.

Friday, May 19th.

There's something narcissistic about writing about oneself all the time. I'm not entirely comfortable with it...although I do find it somewhat therapeutic to write in general. That's why this website is working out so well. I know that the only people reading it are family and friends and you have the choice to read it or not....and comment or not. I leave it in your hands.

Just finished my second session of physio. After last week's assessment....she called my family Dr. to tell him that the weakness was in my hip and not the knee. He told her to "PUSH ME " ... the next time I see him....it will be ME doing the pushing. No...not really, it was quite a good but "painful " session. I'm learning I have to trust this woman...even though she's inflecting pain...I have to believe in the end, it's going to strengthen my leg. I came away with another new set of different strengthening exercises and will see her again in 2 weeks.

I do feel that after completing the first week of exercises, my leg does feel a little stronger. But I have a long long way to go before I can see this getting back to " normal "

In the meantime, we'll have the results of the Bone Scan...probably by Wed. or Thurs of next week if not before.

I asked her if depending on the results of the bone scan, if it was indeed a metastasis of the cancer, arthritis, or something else....is it going to be possible to rebuild this leg and she said " definitely ".... So that made me feel good. I was reluctant to even ask the question. Sometimes, the questions are harder than the answers.

May 23rd.

Just got back from seeing Dr. Shah. He's quite concerned about my leg and thinks there's a possibility that there might be bone pressing against a nerve and that I may need radiation. He would want me to start it before going back to Ont. I've just put in a call to my family Dr. to get the results of the scan asap and fax them over to the Cancer Agency. He's given me my capecitabine to start on Thurs....but I'm not to start it until we find out what's going on. I should know more by the end of today or tomorrow at the latest.

In the meantime, just booked my flight home for June 14th. Sooooo looking forward to spending the summer with my family.

I'm not at all shocked about this...I've expected it to be something other than a minor injury to the leg as a result of weight loss. Still maintaining the 88 lbs.

Wed. May 24th.

I just spoke with Dr. Shah. He still doesn't have the bone scan results back yet. My tumor marker is still climbing. It's at 30 now. He want's me to continue on with my oral treatment while I'm away with the plan to start Irinotecan when I get back to Vancouver in August. The side effects are a lot more severe than what I'm currently on and he doesn't want me on it while on holiday. He expressed feeling comfortable with this decision...and we're hoping to slow the disease enough with just the capecitabine over the summer.

Have to admit, I'm relieved about that...AM NOT looking forward to the next drug.

I assume that if the capecitabine doesn't slow it down over the next couple of months...I'll have symptoms of that and might have to start the new treatment in Ont. anyway.

One phone call at a time....Will have to wait another day for the scan results.

May 25th.

Just got a preliminary verbal report of the bone scan. NO bone metastasis. They want the scan to be repeated again in 3 months. It did show hip atrophy but the bone scan would not detect the "cause" of that. So..I'll just keep on with my physio therapy for now.

May 29th.

I never used to be a hypochondriac !!!

Interesting turn of events this morning. I woke up with upper abdominal pain and my leg pain is getting worse by the day. Nothing is helping...I'm at my wits end and am ready to board a plane. I was sitting in my rocker waiting for the morphine to kick in and the phone rang. I've been expecting a call from Joe as he's in Vancouver for the day on business...otherwise I wouldn't even have answered the phone.

Well...it was Dr. Shah, my oncologist calling to
"see how I was " He couldn't have called at a better time. Anyway, he said even though the bone scan is clear there could still be a node pressing on a nerve in that area. He's ordering an MRI for this week and If it turns out to be that....I can get some radiation before returning home to ease the pain.

This is my idea of " great news " these days. As far as the abdominal pain is concerned, it's " probably " related to the chemo.

If the leg pain becomes any worse I won't be able to walk...not even with a cane so....crazy as it sounds....I'm hoping it's a node pressing on a nerve because the radiation would help me to walk again....and right now.....life doesn't get any better than the thought of walking again.

June 1st. MRI.

My appt. today was bumped up to noon instead of 3 pm. After it was over I asked how long it would be before my Dr. had the results....she said " it's already in his computer".

So, it's just after 5 o'clock now and he called about 1/2 hr. ago with good news....whatever is happening with my leg is not cancer related. He wants me to go back to physio boot camp and even though it's contraindicated with my chemo...he told me to take small amounts of ibuprofen and to use heat therapy. I'll start on that immediately and will keep you posted.

June 10th.

Only 4 more sleeps and I'll be home with my family. I'm almost afraid to write that things are still the same. That's good news and I hope that writing it won't jinks it. The problem with my hip and leg is the same except that I'm getting a little relief from the Ibuprofen I take once a day before going up the street for my daily walk. I'm taking that as good news. The fact that it's not getting any worse is reassuring.

A summer without Dr's or visits to Emerge etc would be bliss !

I don't plan to see a Dr. except for a requisition for blood work which is required while on treatment. The stent problem feels like it's stabilized....thank god !!

No news is good news....so if you see that I haven't updated the site for a few weeks....take that as a sign that all is well.

July 3rd.

Well I almost made it to 3 weeks without visiting an emergency ward. That changed this morning. The leg pain had become progressively worse over the past few days in particular. It was taking more and more medication to try and keep it under control and even then the meds were just taking the edge off. Kim took me to Cambridge Emergency this morning. I was nervous about going because of the experience I had at emergency rooms back in Nov. of last year in Ontario and didn't want a repeat of that. That wasn't the case...thank god !! I had an excellent experienced emergency care physician looking after me. After the initial consultation, he ordered blood work and we had to wait for almost 2 hrs. for the results before any decision could be made. He came back into the room to see me and said that after consulting with a team of oncologists at Cambridge Hospital...they unanimously agreed that the leg pain was neuropathic and not "directly" bone or cancer related. They've got me on 2 new drugs which I will start today. I'm to stay on them for a month. He seemed quite confident they would work. I asked If they were just for controlling the pain or if they actually helped with the healing and repairing of nerve damage...he said both. Encouraging !

Kim and I did a little research on neuropathic pain when we got home from the hospital and one of the causes of it is " chemo " .... well not surprising since I've been on it for almost 3 years now. The description was exactly as it happened to me. Out of the blue without any injury to cause the limping or pain and getting progressively worse.

So...that's the latest. I'll let you know how the new drugs work and would love nothing more than to be able to write and say...guess what...I can walk again !!!!

For now though...I'll take just pain relief if that's possible.

I love being here by the way. I love being with my family. It feels right. I don't even miss my solitude yet...go figure !!!!

July 12th.

Today I met my new family Dr. in Cambridge. We spent an hour together getting to know each other. He's a very boyish looking 42/43ish year old with an arrogance that I hope he acquired over the years because of his skill as a physican. I've noted the same type of arrogance in my Oncologist, My G.I. Dr. and my Surgeon. All of whom I came to respect and trust over time. After taking all the information of my 10 year history, his comment was " and you're still here ? " .

He wants to proceed slowly. I'm going to have all my medical records transferred to him. I'm making an appt. to see him again in one week...which is when he will make his assessment and will do a physical examination of my leg. He doesn't seem to think that this is neuropathic pain. He does feel that it's a pinched nerve somewhere in the body but won't speculate beyond that. Unlike the physican I saw in emerge last week, He vehemently disagrees with the morphine issue. The emerge Dr. said stay away from the morphine. This Dr. wants me to increase the morphine to the point that I'm as pain free and comfortable as possible.....which is what Tam has been trying to tell me for weeks. I had already taken myself off the meds the emerge Doc had prescribed due to severe side effects and felt no relief from the pain whatsoever...in fact it's just getting worse.

So starting today, I'm going to take morphine 3 times a day...along with Ibuprofen for inflamation....and will patiently wait to see where we go from here when I see him again next week. He said that neuropathic pain can be diagnosed with testing and was surprised that the emerge Dr. had made that diagnosis without any testing other than blood work.

Who to trust...Who to trust ??? What to do ? What to do ? So many opinions...so many Dr's.

The leg pain has severly limited me at this time to very short walks...mostly around the house. I don't venture too far away from home. The morphine does help it...but I'm afraid to do more walking when I'm on it...in case it causes it to become more inflamed...therefore making things worse.

My appetite is good...my spirits are quite good most days and I attribute that to being around family. Daily hugs and kisses go a long way in the healing process...I'm enjoying my summer and except for the leg pain...life is wonderful as always !!!!

July 20th.

I saw Dr. Laird today for a follow up to last weeks appt. ( he's the new family Dr. ). He spent another hour with me and was very thorough in his physical examination of my leg and hip. His conclusion is that it's all muscular and orginating from the hip...just as the physiotherapist had said. He's ordered another MRI for a look at the hip to rule out cancer in that area. Apparently the MRI done in Vancouver didn't include the hip. He also wants me to see a physiotherapist here. I won't do that until I have the results of the MRI. He's hoping to get me in within the next 2 weeks before I go back to Vancouver. I'm just to continue taking morphine as needed for the pain...do as much physio as to not cause any pain and to stay as active as possible. He said the muscular condition is something he sees a lot in his elderly patients..not someone my age. Sooooo I'll wait for the next MRI to completely rule out cancer and go from there. In the meantime, I've had a spectacular 4 days at the cottage with all my family and feel very contented and very much at home. I can't believe I've been here for over a month already and will be heading back to Vancouver in a few weeks. I'm hoping to stay only long enough to pack up what's necessary...get rid of what's not necessary and come home again. I would not have believed I would feel this way about being back here...when for years...the thought of it made me physically sick at times. I guess time really does heal everything !!!

Aug. 9th.

Finally...a definite diagnosis. The pain was becoming unbearable. I was finding that I would need to take larger quantities of morphine and more often to take the edge off the pain. By yesterday, I couldn't take it anymore and Paula drove out and took me to the Cancer Center in Kitchener. After 7 hours of a combination of physical examination of my leg and hip, x-rays of my spine, hip and leg and consultations with the emergency Dr. on call and a radiation oncologist, I was given the news that the cancer had metastized to both the hip and the pelvic area. Again, It did not come as a surprise.

They've put me on a different form of morphine...same family of drugs but much stronger they tell me. So far I feel a slight difference but certainly nothing significant. Not the miracle drug I would have liked. The drug also has less side effects than morphine and that alone is a blessing . I'm also going to be getting more radiation. I should know more about that today, but I expect it will be done immediately. Radiation " will " be effective for the pain and that's really all I'm concerned about at this point. I also have to stay off my feet as much as possible because of the risk of fracture.

Naturally I won't be returning to Vancouver at this time. Winnie will be taking charge of packing up my things and having them sent back east.

I'm considering getting a scooter to get around but want to wait until the radiation treatment is finished and I have more relive from the pain.

Strangely enough, I'm relieved that at least now I know what's causing the pain. I know NOT to do any more physio. I know I have to find things to do from a chair other than knit or read or watch TV...so if you have any ideas...I'm open to them.

I'm going to miss Vancouver and the friends I've made there over the past 7 years. I still hold hope that I'll be able to get back there for a visit some time over the next few months if they can get the pain under control.

I feel extremely gratified to have had the pure pleasure of living there for the time that I did and to experience a completely different life style. I truly fell in love with it all.

I'm equally as content right now being at home with my family where I belong. I no longer have to miss any of the barbecues and family dinners and most of all...I get hugs on a daily basis and there's nothing that compares to that....nothing !!!

Will stay in touch and write more as things develop.

Update Aug 9th. Hospital just called and my radiation treatment is tomorrow morning at 9:30. Have to be at the hospital for the entire day. Will write later in the week.

Aug. 10th.

I received a call from the radiation oncologist yesterday afternoon to cancel the radiation treatment for this morning. He wants an orthopedic surgeon to examine me before they proceed to make sure that the leg is stable enough for radiation. It's possible they may have to operate before they can treat. I have an appt. with the surgeon Friday morning and will update after that.

August 12th.

It's all over. Kim and I went in yesterday morning to see the orthopedic surgeon. He gave the go ahead for the radiation...got on the phone immediately and spoke with the radiation oncologist. They sent me for the tatoo markings at 11:30...followed by the 10 minute treatment itself at 2:45 and that was that.

Now I wait to see if it will work. I'm to expect a flare up of pain over the weekend before it settles down and and relief will follow shortly after I hope !!!!

There are 2 possible reasons for the pain. One is from the tumor itself...the other is from atrophy of the hip....so the plan is to start with the more obvious cause first with the radiation treatment.

I have an appt. again with the orthopedic surgeon next Friday after my CT Scan. If the radiation works....that's great...if not...he'll consider hip replacement surgery and I can't wrap my head around that right now...so will deal with it when and if I have to.

I can't believe that between Tues. and Friday of this week I've had not only the correct diagnosis but the necessary treatment as well. Boom, Boom, Boom !!!.

What a relief it was to come back from the hospital yesterday afternoon. Even though the pain is still there....I know that everything is being done that " can " be done for now and that's all I can ask for. I feel like I'm in good hands. All bases being covered with a pain management team, a surgeon...an oncologist and a goood family Dr. He's called a couple of times this week to see how things are going and I'm impressed.

Aug. 18th.

I met with the orthopedic surgeon this morning after my CT Scan. The scan results were inclusive and he wants to repeat it in 3 weeks...at which time a decision as to whether or not hip replacement will be an option.

The radiation can only help decrease pain around the soft tissue area of the tumor. It's not effective for the more mechanical problem with the degenerative hip joint. Very distressing news.

I was hoping to have had more pain relief from the radiation but it's certainly not happening yet. In the meantime...I have to be very careful about spending time on my feet. Evan a slight fall could pop the bone out of the socket and I could be in real trouble. I'm trying out crutches to get around instead of the cane. It seems to take more pressure off my leg....just have to get used to it.

Next week I have an appt. to see my pain management Dr. at the Cancer Center. The drugs are making me quite sick and have really affected my appetite.

Home and Happy - August

I woke up this morning feeling like I had climbed out of a very very dark hole. I feel like myself in body mind and spirit....which is something I haven't experienced in a long time. The pain is under control, the nausea is still there to a degree but nothing to complain about considering how severe it was over the past few months. I have home care set up to come in and assist me in any way I need.

A bone scan done while I was in the hospital showed 2 more spots in my back and another appt. with the radiation oncologist will be set up again to see if they can radiate them. I don't know if this will have any bearing on the going ahead or not with the hip surgery.

The pain in my leg and hip has improved remarkably. I think the radiation treatment to that area is finally showing benefit.

I can't say enough about the care I'm receiving. Not just the health care providers but the system in general. I think if anyone complains about our health care here in Canada...I will have to kill them.

If there aren't any new updates to this site...it's safe to assume that all is well.

August 23/06

Okay. New format. This update is to inform everyone on today's happenings. Mom has asked me to update her site tonight and I will continue to do so as long as she is in hospital.

John took her to her scheduled appointment with Dr. Lana Tan today. She is a palliative care physician who is specially trained in pain and symptom management. Mom had not been having a good night/morning and had been unable to keep anything down- including her medications. Needless to say, by the time Dr. Tan saw her, she was in pretty rough shape. Action was taken immediately and her pain was under control within 10 minutes.
A thorough history was again taken and an action plan constructed. She was admitted to the Grand River Cancer Centre hospital for a few days to get her pain under control- and to try to control the nausea. She is currently on a subcutaneous pump of a drug called Fentanyl. Once they see what dose she requires to keep her comfortable, they will switch the infusion to a simple patch that goes on the skin (like a nicotene patch) that is changed every 3 days. She is also receiving Intervenous steroids- Dexamethasone (Decadron), which will tackle a few things at once. It will reduce swelling (which causes pain), it will increase her appetite and control her nausea.

Tonight Mom is more comfortable, although the infusion is burning her when she has to give herself a "bolus" dose. They are going to monitor this and possible change the route to IV instead if this keeps up. No nausea thus far tonight. Her TV and phone are hooked up.

So......
A productive day. She is gettting excellent care from a team of highly qualified medical professionals. She is in a good place right now and I think she is very glad that FINALLY she might see some relief from this relentless nightmare she's been living.

Until tomorrow, Tammy.


Aug 24/06
A Great day. Fentanyl through the IV is working for pain control! Finally some relief. Mom had a good day- free from pain and free from nausea. John, Rach, Ava, Katie and Ben visited today. I came and spent a wonderful afternoon and evening with her- talking, watching T.V. curled up on the hospital bed with her - she even managed to persuade me to give her a hand massage. She is eating more- Fries with Gravy!!- and her smile is back.
Tonight they have put her on the fentanyl patch and will discontinue the IV in the morning. It may take some dose adjusting with the patch to get it right, but she should remain comfortable with "breakthrough" medications just in case she has pain. So far the fentanly is well tolerated. No nausea and no sedation.
A really really great day.
It's about Freaking time!


Aug 28/06
Well. Mom is still in the hospital. She is hoping to get out today or tomorrow. She remains on the fentanyl patch but they've had to increase the dose as she was needing more "breakthrough" pain medication. So, the new dose of the patch should take maximum effect today.
She is eating well and is in good spirits.

Upon discharge from the hospital, she will be going to Kims and I am picking her up on Thursday evening to come live at suite 101 at the Benoit home.

That's all for now.

Scroll down for most recent update:
Sept 18/06

Well, it's been a long time since an update. So many things have happened that it's hard to know where to start. Everyone pretty much knows the latest- that mom has moved into "Nana's Nest" at the Benoit home. She is so, so happy to be surrounded by all of her things. Her beautiful bed, her artwork and pictures- just to have the comforts of what is hers has made her so happy. She spent 2 weeks here at the nest- Homecare is coming in once a week to check up on things and will come in more frequently if and when we need them. Moms pain has been fairly controlled over the last couple of weeks- a phone call almost daily to the Grandriver hospital Cancer Centre has ensured that pain control issues are dealt with immediately. She was on the duragesic patch and taking breakthrough morphine by injection about 4 times in a 24 hour period. She had an appointment for a CT scan and with the orthopedic surgeon on Friday regarding her hip. This brings me to the latest update...

We arrived at the Cancer Centre at 1200 for a 1:00 appointment. As soon as we arrived, mom was starting to be in alot of pain and having some nausea. To make a really long story shorter, things spiraled out of control really fast. Her pain escalated to levels that she has never seen- and she was very very sick. She was admitted immediately and was put on Fentanyl IV for her pain. All immediate family members were notified of her change and a very long night was put in by everyone.
By the morning, mom was sitting up drinking coffee with her sister Paula!!! She has the amazing ability to pull more rabbits from the same hat. Needless to say, everyone, including the doctors were shocked at this new person in front of them.
She has had a CT scan of her chest/abdomen today to see if radiation to her spinal lesions will help her pain. The plan is to decrease the IV Fentanyl, increase the duragesic patch and start her on a drug called sufentanil. Sufentanil is administered IF she has "breakthrough" pain. It is quick acting- about 5 minutes and is out of the body within 30-45 minutes. It is given under the tongue- which will hopefully eliminate the need for injectable anything. They are starting that today, so hopefully this will be effective for her and she can return to her nest ASAP.

That's it for now. I'll try to update when more information becomes available.

Sept 20 /06
Mom remains at the GrandRiver Hospital. They have taken her off of the Fentanyl IV completely. She is currently on duragesic 175mcg via the patch, and she is receiving sufentanil under her tongue as she requires it. She has needed it hourly throughout the night. They will increase the dose of the patch today. The radiation oncologist was in yesterday and confirmed that she indeed requires immediate radiation to her back. She is being "marked" today and will have her 1st dose hopefully later this afternoon. This will go a long way in easing the pain in her back.
Mom is very, very tired. Exhausted from the excrutiating pain she has had to endure the last couple of days. She is so strong. She is a truly amazing person.

I have added a guestbook to this site, so visitors, please feel free to sign it for mom.

Sept 21/06
More rabbits from the same hat! Mom is having a good day today. She is now on fentanyl 200mcg and but continues to take sufentanil every 1-2 hours for pain. She has finished her second day of radiation today and has 3 more to go. Hopefully this will ease her pain a bit and they won't have to increase the patch again.
Tonight she is in good spirits. Yesterday she had a wonderful visit from her brother Kevin and neice Elysia. She loved all of the pictures of Elysia's baby girl. Grace and Julianna came for a visit tonight- mom was so happy that Juianna curled up in her bed with her and snuggled. I think this was like medicine for her. John and Rach came in late tonight and had an amazing visit.
Mom's friend Anne has left now for Vancouver and was really happy to leave mom on a good day.
So... Friday radiation and then Monday and Tuesday. She is really looking forward to coming back home.

Sept 25 /06
Mom has put in a very bad day. The pain in her abdomen came back early this morning and they could not control it. They ended up giving her a drug called nozinan which is a sedative- so she is not in pain right now, she is just sedated. She is back on IV fentanyl for her pain. She has not "voided" - (pee) all day and has not eaten anything. Her respirations right now are 5/minute and very shallow.
Dr. Tan was in this evening and said that moms abdomen is very hard and distended again (the same thing that happened last Friday). She said she wouldn't be suprised if (the cancer) wasn't in her stomach now.
I am just waiting for Joe to come home and I'll be heading there. I will update the site as the situation changes.

For right now, mom is comfortable. She is completely sedated and is free from pain. Amen.

Sept 26/06
Hello everyone. I am updating this from the hospital. Mom put in a "drugged" night, and today she is brighter but remains on the fentanyl IV for pain. Mom really wants to come home to Barrie. Right now homecare here in Kitchener is trying to change policy in Barrie to allow that to happen- as it sits right now, they won't allow fentanyl IV to be administered at home. Ridiculous. We are working very hard here to make this happen for mama.

Will update when I know more.

September 28/06
Victory!
Mom has only lived in Barrie for a couple of weeks and all ready she has made history. She will be the first person in Simcoe County EVER to come home with a fentanyl infusion through a PICC line. She will be transported home via ambulance on Monday or Tuesday. She is very, very, very happy about this.
Homecare here in Barrie, Homecare in Kitchener, the nursing agency, Dr. Tan (moms palliative care doctor in hospital), and my family doctor have been involved in making this happen for her. What a process! Change can happen!

Until next time, Tammy.

Scroll down for most recent update:
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October 3/06
OMG. So much has happened. CCAC called me late last week to say it was all a go with regards to mom coming home. Yesterday am they called and said they couldn't do it ! I have been beside myself. Yesterday they told my mom she couldn't come home- unless I took full responsibility for he fentanyl pump!!!.
I have been on the phone ALL day today. College of Nurses, CCAC Kitchener/Barrie/regional manager and the ministry of Health and Long Term Care manager for Simcoe County. It all boils down to they are going to accept mom here- but it will take a couple of days to process the new agency "policy and procedure" regarding the fentanyl infusion. In the meantime, they are transferring mom to RVH here in Barrie. She can have day/night passes and will be home for thanksgiving which she was most devasted about missing. I am just waiting to hear from Grandriver regarding time/date of transfer. They were working on getting a bed for her last I heard. I will call shortly to see what progress has been made.
When I know more, I'll update.
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OCTOBER 4TH
Mom is still in hospital. She is doing well but the fight to get her home has become an unbelievable nightmare. The hospital here in Barrie- the same hospital that I am employed at will not accept mom with the medication she is receiving via her picc line. No organizational policy currently exists, and they realize this is a "gap" in their care and they are trying to put a new policy into place, but it has to go through 2 different committees and won't happen for 3-4 weeks from now!
A phone call late in the day by myself to the actual nursing agency in Barrie who is putting the policy into place for homecare,and training their nurses in the care of fentanyl through a picc line- turned up some very interesting information. CCAC here in Barrie has told me all along that it's the nursing agency ST. Elizabeth, who doesn't want to take mom on due to a lack of policy and untrained nurses with this particular medication. According to the clinical director/educator for the actual nursing agency (ST. Elizabeth)- THEY DO HAVE A POLICY IN PLACE, HAVE GIVEN THIS MEDICATION IN OTHER JURISDICTIONS, HAVE TRAINED NURSES AND HAVE BEEN WILLING TO TAKE MOM ON ALL ALONG! This same person with which I was speaking, informed me that it was CCAC who was not willing to take mom home with the pump- the same people who said they would be willing to bring mom home with the pump, as long as I signed a legal document stating that I would take 100% responsibility for the fentanyl infusion.
So....needless to say, I am through playing nice, as it gets you nowhere. Tomorrow I will be spending some time with the CCAC regional manager. Tomorrow the clinical director/educator from St. Elizabeth nursing agency will be spending time with her as well. He (Glen) was completely shocked with the information I provided him, as I was as shocked with the information he supplied to me. We will both get to the bottom of this fiasco tomorrow morning. Mom just might make it home for thanksgiving yet.
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OCTOBER 6
Miracles do happen. Finally a person at CCAC who cares enough and has education as well as common sense. After having been on vacation for two weeks, this case manager was shocked to come back to work and find out that mom was not back in Barrie and even more shocked at what has transpired. She apologized sincerely about how this has been handled from the beginning. She was going to do everything in her power to get mom home. In the meantime, the hospital moved forward with their decision to discharge mom to Cambridge.
I received a phone call this morning from my now hero at
CCAC to inform me that Barrie will now accept mom and that she is cleared to come home!!!! Unfortunately, this won't be able to occur this weekend, but she will come home Tuesday from Cambridge. My hero also wanted me to know that an investigation into why this happened in the first place was going to occur within the CCAC organization next week. They are going to gather all persons involved and try to prevent this from happening again in the future. They will use this as a learning "case". So... in the end some good may have come from all of this.

Have a wonderful Thanksgiving everyone. This Thanksgiving we certainly have alot to be thankful for.
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OCTOBER 9
The technical glitch that is not allowing the guestbook to be signed will be fixed asap tomorrow. Please be patient.
Well. Thanksgiving was a wonderful celebration with a house full of friends and family. A combination of traditional and newfie thanksgiving delights were enjoyed by all. Mom was able to sit up in Ken's big leather recliner and be a part of it all. She so much enjoyed the ambiance, the music, the sounds of the children running and playing, enjoyed Grace and Ava have a tea party, the smells of thanksgiving that filled the house, the laughter and especially all of the hand massages and pedicure. Spoiled rotten she was - and she loved every minute of it. She soaked it all in.
Thanks for everyones effort in making this happen. What a blessing.
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OCTOBER 11
Finallly. What you all have been waiting to hear. Mom is finally home. She was brought home by John and Rach and Ava on Tuesday evening. They heated up the seats of the Envoy and she was in luxurious comfort the entire way- pain free. She was so happy. She had a great sleep and a great day today. Nursing came in this morning and I think were quite amazed at the person in front of them. I'm pretty sure they were expecting someone on that much IV fentanyl
to not be as "alert" as she is.
I am taking a course through the University of Alberta- I have been in communication with them throughout all of this. They are very interested in learning more about moms case and how to better their home care policies regarding this issue. They are interested in talking with the palliative physicians at the Grand River Hospital.
Perhaps something good will come of all of this... perhaps mom will be the pivitol case in changing how difficult pain management cases are dealt with in the community.

Thanks to everyone for their ongoing support. Mom read all of her updates today and was quite touched. Keep them coming!
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OCTOBER 19
Coffee Culture??? Last weekend EVERYONE that came to visit brought a "round" of lattes! My coffee table was filled with Starbucks cups. Mom was in her glory.
She enjoyed a ffew hours out last Saturday. She has been out of a good book to read and I suggested that she go online to Chapters and look around and that I would pop over and pick up what she had chosen. She had another plan. She got dressed and wanted to go over to Chapters with me! We were there for about 2 hours- and of course had our lattes. I had been reading some cook books so it kind of got both of us thinking about different foods. We decided to pick up some Indian food and bring it home. A wonderful, wonderful Saturday indeed.
So, this week her days are filled with regular coffee and a couple of good books.
We called the doctor Monday morning as mom has had a cough that has been increasing since Thursday. He ordered antibitics right away, phoned them into the pharmacy immediately and I picked them up 15 minutes later. How's that for service??? The doctor did come in on Monday evening for a home visit. We reduced her fentanyl patch then as well.
Today is Thursday. Physio is coming in to assess mom for a walker- as this might offer some additional support while she is up. We have reduced her patch even further today as she is in no pain. The nurse is coming in today to do some blood work- as mom has a "double Picc line" it will be a piece of cake...no looking for a vein- they just take the blood from the picc line. Voila.
AMAZING news I would like to share with everyone. When I was speaking with DR. Shaver this morning at RVH, he checked into the status of the "fentanyl" policy changes and was very pleased to inform me that the policy has been fast tracked due to mom being "in the community"!!!! All this means is that IF we have to resort to her going to hospital- which we are going to avoid- then it won't be a problem with her being on the Fentanyl infusion. Great news. From here on in, I'll try to update at least once a week, unless something happens then I'll update right away.
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OCTOBER 28
Well, nothing much to update in this last week of October. Mom is comfortable and happy. She is up for coffee and a bite to eat in the mornings and then rests most of the days. Evenings Julianna and I have been bringing the rocking chair in beside the bed and sitting watching T.V. with her for a while in the nest. Mom looks so forward to Monday nights (Prison Break) and Thursday nights (Grey's Anatomy). Last night was a repeat of Grey's, but it turned out that she was in the hospital during the original airing of that particular episode, so she was happy to watch it. She loves the weekends when family descend upon the house. The house is full of laughter and love. (and the occasional latte and glass of wine- or "dirty" martini's)

She continues to receive homecare visits from the nurses 3X per week. They have been wonderful and have established a great relationship with mom. She is well cared for, that's for sure.

So, as November rounds the corner, we find ourselves hanging on to each and every day that we are blessed to have Mom still here.

Take care everyone,
Tammy
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