Hats of to the Stranger

I’m done!!!!! I’ve completed 6 sessions of Chemo and now it is time to have this poison leach from my body.

 Don’t get me wrong, this was a choice I made, I didn’t have to have the chemo, I could have relied solely on GOD’s will through prayer and meditation but as I said before, “I’m not Suzanne Summers or Jenny McCarthy”( there’s a mental picture for you.) “ GOD gave the my medical team the skill, the knowledge and the ability to use those attributes. Who am I to ignore they advise?”  Chemo, as with pretty much all medicines, is a poison designed to kill organisms, tissues and other parts of the body that is causing issues. The difference in most medicines is that they skirt the fine line between hurting and helping, in most cases helping outweighs the hurt so we go ahead. However Chemo goes in and kills more than it’s intended target and the body takes its own sweet time to heal itself after. ( Ok all you medical friends that is an overly simplified statement but essentially true.)So now I heal.

The last day was really no different from the others, blood work, Oncologist meeting and then the chemo. Blood work was fine, when I met with the Oncologist he told me that my PSA was 0.037 (it actually was immeasurable but they still give a value above zero) and everybody was well pleased. When I entered this phase of life last August beginning with the hormone treatments I had talked with him about how tired I was during my first week back to work after the 5^th treatment and we agreed that I should stop being a hero, take the extra week off and then go straight into a week of holidays so I will have 3 full weeks to regain my strength and try to get back to my normal. (my normal, cause Lord knows it isn’t YOUR normal). So here I am trying to get whole again. When you take radiation or chemo, The Regional Cancer Clinic has bells you can ring. It is a celebration of the fact that you have completed this  course of treatment and while many if not most ring the bell, I chose not to. Please don’t  get me wrong, I’m  really, really, no really glad this is over but I was also really uncomfortable ringing the bell and let me tell you why.  My treatments were a proactive approach to killing something that might be trying to start. Most people are taking treatments as a reactive treatment to something already attacking their body. When I took a quick tour of the Chemo Section, one of the first things the nurse told me was to be aware of the  fact that most people who come in here are more sick than I and in fact in more dire straits than I. This stuck in my head the whole time, and was in fact, fairly evident whether I had been told or not. So here I am attending six sessions walking into my treatment and leaving my treatment more like a visitor or attendant rather than a patient. It didn’t seem right to me that I would stride out full of energy and colour and jump and down and say look at me I’m done, I’m no longer sick, you too can be like me. It just felt wrong. I did say to the nurses and staff , that if you want me to ring the bell , if you think that it might be useful to others, then I will do it but if you are giving me a choice then I would rather not ring the bell.  As an aside I can’t say enough about the staff at the Regional Cancer Program.  From the receptionists to the nurses, doctors to technicians all were pleasant, all were empathetic and all made you feel important and not just another patient. I hope you never have to experience this but if you should, you are in good hands.

Healing, 

I have begun to taste again, food will soon be something to savour and enjoy, rather than something to keep you alive. The biggest obstacle to overcome is stamina and breathing. A week after treatment and driving back and forth to Guelph on consecutive days was tiring. Yes I took breaks, yes we took time to eat and I did nothing when I got home but man was I beat. Simple tasks can be done but in 2 hour spurts and then followed by a nap. I’m sleeping 7 hours plus at night instead of my customary 5.5. There is usually an afternoon quiet time, not necessarily a nap but certainly an hour of doing squat. I tend to lose focus faster and takes a little longer to go full circle and come back to the lost thought. The biggest  obstacle is lack of breath.  I can sit in the kayak and go for a 2 hour paddle and be ok but push a lawnmower for more than ½ an hour and  I feel like I just did a 100 metre dash. I can sit on my hands and knees and weed for an hour but climb the stairs at the SAIL store and I’m close to being in distress. It isn’t a breathing in issue, it seems to be an expelling problem, so more like COPD  than Asthma ( which I do suffer from).  So while I look ok and you might think I should be back to work, I really am not ready to do anything more than type or walk slowly.

Next steps,

I am still being treated for the prostate issues,  and the bone issues although we seem to have turned the corner. There is going to be more tests, consults and possible treatments,  with Oncologists and Urologists but certainly we seem to be out of the woods at this time. I see the Oncologist in August and the Urologist in September, then there will be the usual 3month, 6 month and 1 year checkups before anything can be declared. In the mean time R&R, work and no worry. (HA)

I will say that I have learned to be more patient, hurry up and wait is a way of life at the Regional Cancer Program, I have also learned to slow it down, at least slow down for me. I have had time to reflect on life,  children and grandchildren. “No” or “ I’m not up to it” or “I can’t” has slipped into my lexicon. Taking more Bill time has happened, although weeding beds that should have been done weeks ago still frustrates the heck out me, I am dealing with it better. I think, maybe, well...........

I can’t thank all of you enough that have prayed, sent well wishes, taken the time to help out  or come over for a coffee. Knowing that you are out there has been a great support system and that along with my faith in GOD and JESUS has kept me from falling into a deep pit of despair. You have kept my spirits strong and you have been understanding while I have been pushing myself and not quite meeting the bar I set for myself trying to be as normal as possible. My friends, Wen and Dave, Cyndi and Larry and a special hug and kiss to Mark and Lynne who along with Mary and Bob have prayed daily and sometimes more than once in a day. I felt everyone of those prayers especially on the tough days. Some of those decisions of mine may have not been the smartest ( driving to Quebec on day 2 after a treatment, playing golf on day 3 of a treatment) but I don’t regret trying these things at the times I did them. I need to publicly thank my family, this is been hard on them, some went through his with DAD, and MORAG, all have been helping me try to be normal while continuing through their own life’s challenges..

Many songs of praise, were instrumental to my journey in this last 6 months, I will Rise by Chris Tomlin, We Believe by the Newsboys, Build Your Kingdom here by the Rend Collective and 10,000 Reasons by Matt Redman  among them all of which our Choral Group, THE MAMMAZ and PAPPAZ introduced to the congregation of Trinity Community Church. If songs of praise are you thing I suggest you check these ones out, they are all available on You Tube. The other evening when Mark and Lynne were over for dinner, we began talking about music and other things and the group Lighthouse game up and it reminded me of one of their songs Hats off to the Stranger.  Several lines in their verses stood out and certainly for the next month I may take to heart. You may think what you like, but I think the stranger was an Arabic looking dude with a gentle disposition and a loving heart, that came to earth to save us all, and to walk with me during this journey.

"Walk down the road of life, a-happy as can be
But not so happy, yeah, that you can't see
Be very careful, mm-hmm, everywhere you go
Take it very slow"

"Nobody's perfect, boy, not me or you
It doesn't matter what you say or do
But you could be singin', yeah, a better tune

Hats off to the stranger
For tellin' me what he knows
I said, Lord, I here ya
And I'm walkin' slow, yeah

Read more: Lighthouse - Hats Off (to The Stranger) Lyrics | MetroLyrics

Until later,

Bill

It is still better look down at the grass than up at the grass  J

One More To Go

I have said this before, it amazes me what other Chemo patients go through and are still able to function and keep a stiff upper lip. I take a single drug instead of a toxic cocktail and I feel that I have been dragged backwards through the ringer, stood up and pushed through the other side. Don’t get me wrong,  take a week off, I attend meetings, do some light gardening and get the dogs their morning walk, but the constant fatigue, lack of stamina and no breath is mentally taxing.  I’ve started the first of two weeks off of Chemo which means the first week back to work. Staying awake in the afternoon, keeping on track, and keeping focus are really difficult this time.

Thursday last week I decided t as a good idea to travel to Sailbury de Valleyfield QC to visit my sister, her husband and cousins who had flown over from Wales for a conference and were staying for the Montreal F1 race. After Beth got off work on Thursday we got on the road and headed east. I did really well until Napanee where we stopped for a protein break. While taking time to stretch, eat and rest we got a text informing us that there was a new baby that is going to join our extended family in November. On that high we got back on the 401. Just down the road, the fatigue started to set in, the adrenaline high started to abate and trucks appeared in front of us a lot sooner than I would like. Time to pull off. We pulled off at Brockville, with an hour and a half to go we decided to get a room for the night. (part of the backup plan all along). It was a great visit, but daily driving, walking through museums and the odd beer a day ( that would 3, 5 7 not 1) would take its toll. After supper if we were just talking i was falling asleep by 9:30p, I needed more  alone time than usual, fortunately not many are up with me at 6am, and certainly the shortness of breath and the joint plains were taking a toll as well.  Was it the smartest thing I have ever done, NO!, am I sorry I went NO!, would I do it again IN A HEART BEAT! A chance to see family that I haven’t seen in 3-4 years, and I may never see again for the same length of time or longer, and only 7 hours away is a powerful draw. We came home on the Monday and had a fantastic music practice that evening, but wow did I go for a long deep sleep.

Nausea has been a larger factor this time. I have had to take meds, at each large meal, and some times before bed. The hot flashes from the hormones seem to be more frequent and warmer. Simple tasks take a little longer and if you thought my mind wander before or I couldn’t stay on track before, you ain’t seen nothing yet. My desire to be at work has gone, I’m not dreading it, nor do I hate my job and I loathe the climb up the stairs to my office a zillion times a day but I certainly don’t want to be there for this last 5 weeks but other than the Chemo week I have no real reason not to be there.

My hair continues to grow on top of my head and my beard continues to slowly grow, although red and brown are gone and have been substituted with strawberry blonde and white.  

Ah well things go on, I have been able to garden, kayak, drive to Quebec , move my daughter, yes all at a reduced rate, but I have been  able still to do it which a lot taking this regimen have not been able to do.  This has been the fifth of six treatments, the next one, the last one, I get to ring the “I’m done bell”.  So all things being equal I’m only a few weeks away from totally flushing these toxins from my body and getting on with life.

All things are good and I can still look down at the grass and not up at it.

BK

No Energy

No this isn't about gas prices, renewable energy, carbon tax or anything like that. ( it is not even about grammar as my editor is at work)This is about resilience and stamina.

I've just finished round 4 of 6 with the Chemo and as with all of the others this one was the same but different. It starts the same as all of the other, check in, blood work, Oncologist then Chemo. So far so good. We did add a new twist, a chest x-ray.  I have been have trouble breathing, to the point that I have used my rescue inhaler more in the last 12 weeks than in the last 5 years. Just to push 6 buggies into the store would cause me to lose breath and get headaches. It was possible that I was getting a fluid build up around the lungs, but probably all my strength has gone to fight the drug invasion and left my lungs allowing the asthma to make a occurrence. The x-ray proved negative so asthma it is.

Tuesday evening was normal, sleep, wake up middle of night as the Benadryl wears off, after a couple of hours go back to bed.

Wednesday, drive Beth to work; go home have a nap,  do bugger all; have another nap, prep dinner, pick up Beth, have another nap, go to choral group practise, sing for an hour and half,  go home fall asleep watching TV.

Thursday, wondering why I have taken the week off, starting to loose all taste again ( except for a metallic taste a kin to fresh fillings in your teeth). I decide maybe a little therapeutic gardening is in order. Get the rotor-tiller out , till the veg patch (1/2 hour). Well that took so much energy out of me out was out of commission for over two hours and that was new. Also I was so over heated and unusually so for even as hot as it was that I need a shower to cool down. So being the pigheaded red head ( or use to be) that  I am was I was refreshed and feeling good so I thought I would change the lawn mower blade, which lead to an oil change, a cleaning of the air filter, tuning up an oil filled engine, all in told 20 minutes and another hour and a half nap. So much for doing anything else this day.

Friday,  I figured out that I needed a new air filter for this 20 year old mower. Off to find it, now this shouldn't be too hard except, not at Lowes, Rona, Home Depot, the repair shop I bought the mower nor the dealership the repair shop sent me too or Canadian Tire. Home again it is and another nap. Mid afternoon, after 20 minutes with Briggs and Stratton, 10 minutes with a dealer referral centre and an hour on the Internet, I find that just up the road in the middle of all the places i went to is the only place i hadn't tried and yes they carry the filter. Home again, 40 minutes to cut the grass front and back and wow I almost didn't make it with out a rest. This is something new, normally I'm go go go, 6 hours of sleep and maybe a 10 minute kip after supper. To be constantly out of breath, no stamina, little strength, and little ambition all at the same time is taking some getting used to. Yes they said to expect this, Yes everyone tells me to slow down, Yes there should be more Bill time and Yes I ignored it all until all reserves are gone.  Daniel is not feeling well so Beth and I go over and sit for a couple of hours so the kids can do some grocery shopping. Watch the grandson, listen to the ball game go home and crash.


Saturday, Beth isn't going to get much of a Mother's Day as we are celebrating my Mother's 80th on Sunday, so I decide to take her greenhousing. For the next 7 hours we drove from Mt. Brydges along #2 through to Chatham and down to Blenheim and back along #3. We found our favourite spots, and a lovely breakfast/lunch diner in Thamesville. On the way home we stopped in to work and did the grocery shopping, got home and boy I was knackered. Who would have thought that driving would take that much out of you. We had a late dinner, then a movie with the "major" who popped by.


Sunday, slept in to 7:15, no dogs whining to be going for  a walk.  Come back breakfast on the deck, off to church. Long day, practice singing for the service, finish service, clean-up coffee and get ready for Mom's do, Mom's drop-in and then off to her birthday dinner. Home by 7:30 and zone out for the  evening. Why am I so tired?!


Monday, trying to get back to normal, from this point until the next session everyday from the last session is a better day, strength is coming back. After the school breakfast club, Morag and I try to golf. I say try as it is the first of the season, I haven't the strength to walk the nine holes and my hands still won't full close, But it was a day out. Came home and yes you guessed it, had a nap. Later in the afternoon I was able to prep the trailer and load the kayak for the weekend. Didn't have to take the inhaler for the first time since the chemo, perhaps we are rebounding after all. Tomorrow off to work and perhaps a movie on cheap Tuesday.


I must say that one of the other things I notice is that I find it even harder than before to stay focused on tasks and energy levels still haven't gotten beyond a 60% level yet but as I read this I didn't need a morning nap so maybe I'm closer to 70% today.  I'm  grateful for this proactive approach to treatment and it gives me a new perspective on life and those people who have to take this treatment as a reactive approach.


LIFE IS ALWAYS BETTER WHEN YOU CAN LOOK DOWN AT THE GRASS AND NOT UP AT THE GRASS

Bill/Dad/Grandad/Uncle/Mother Goose/friend

Half way Done

Today is the third session of six and I’m thinking this is becoming old hat. The routine

goes something like this. You arrive, get blood work done, see the Oncologist and then Chemo. A process that takes about 4 hours.  The chemo experience itself isn’t that rough. When it is your turn you are hooked up to an IV machine, given a bag of Benadryl to counter act any possible allergic reactions and 2 Zantacs pills for acid reflux. Finally the drug is administered; ice gloves and shoes are applied and 1 ½ hours later it is time to go home. Today it seems is going to be a bit longer we are a half an hour behind seeing the Dr and that backs everything else up. Getting the chemo itself isn’t all that bad but the side effects and changes the body take some getting use to.

It was my intention to work through the sessions taking only the actual chemo day off. Well I wasn’t prepared for how much this would knock me on my ass. First I didn’t sleep at all the first night, went to work for the evening shift and was just bagged, by the end of the first week I wasn’t quite sure what I was doing. I knew I was at work, I was told I did my job properly but if you told me that I did something unusual or wrong I wouldn’t be able to deny it. Consequently I needed to take the next day off. I now take the week of chemo off, rest when I’m tired, watch for signs of infection and look after my health. So I catch up on my reading and generally chill. That certainly made the next session easier.  During the second week I slept through the night but also during the day, this week I slept to 4am and then, bing, wide awake.

 One of the side effects that really gets to me is the loss of taste and the powdery zinc taste in my mouth. Many of you know of my love of food so you also know how much of a loss this is, although it hasn’t stopped my weight from going up. J The general weariness by supper time is also something I’m not used to, this is an extreme measure to keep an A.D.D. person quiet. I have also have begun to lose my hair. Somewhere just after week one , it felt as if each one of the hairs On my head had turn to pins and when I lay down the pins where pushing into my scalp. Then clumps of hair kept falling out. Sooooo we shaved my head down to just above fuzz in my effort to look more like Earl Dunham and less like Zzorhn Carlson. 

 

Everyone seems to like the new look but me, I miss my thick hair. Don’t get me wrong if this means the evil inside is gone and I never get the hair back then I’ll join my brothers in the Telly Savalis club rather than wear a toupee. I shaved my beard down thinking it would also disappear, it hasn’t in fact it seems to have grown some, not its usual rate of growth but not falling out either.

One of the things I’m also learning is patience. I’m just one of hundreds seen daily many who are much more sick than I so their doctor time runs into mine holding up the whole process ( I’m now an hour behind .and counting). So I bring a tablet, I have my music, my book, and limited internet. A downside of taking the week off is waiting to get paid for the time off. Doctors notes don’t cut it, forms have to be filled, throw in Easter and I still haven’t been paid for that first week off as I begin the next week off. All of this means of course I require more notes and forms filled out, all of which just pleases the doctor to no end. It is a good thing I have a benefit plan that will kick in (eventually) and a spouse that works, I certainly don’t know how a single income self employed person would survive this financially.

Another effect is the overall fatigue that attention loss. To do a normal task such as prepping dinner, or typing a blog not only seems to take much longer than it should, but the need for a nap is overwhelming and often just happens. Not that many would consider that a bad thing but it is most unusual for me. I usually can multitask but that also is a harder juggle than usual. So maybe this isn’t all a bad thing either. Bill time maybe a good thing. It might also be good that we have no spring/early summer air shows this year, the bad thing is all of the shows to spectate at in the same time frame are cancelled or this is their year off.

This has been third in a 6 dose cycle. Week one get the drug, Week two have the symptoms fade, week three 85% back to normal. Then repeat. Ah well this is for the greater good, I’m still looking down at the grass and not up at it and that is always good.

Till next time.

The Elephant in the Room

So I have a secret, not a dirty one, not one that I had people sworn not to tell, but still I had information that only family and close friends knew.  I HAVE CANCER!


Cancer can come in many forms, some such as pancreatic cancer are deadly and some like basal cell carcinoma are just annoyances. I have prostate cancer, and a particularly aggressive form at that.


This latest journey started in February 2014 when I had my annual Physical part of which is the usual blood tests for cholesterol, sugars and PSA. All things came with in my norms except the PSA was rather high. Normal PSA counts are under 4, mine was 21. Well for my doctor alarm bells started ringing and a roller coaster ride of emotions was soon to begin. At this point I have none of the major symptoms, I don't get up frequently in the night, I don't hurt, I have a steady stream, in short what is all the fuss about.

I'm going to make a commercial announcement here; there is a lot of controversy over the PSA test. There are many that say the amount of false positives out weigh any good a PSA could do. A high PSA could mean an infection in the bladder, a false reading or as in my case prostate cancer. I believe it, the PSA test, is just a tool, an indicator that perhaps something is wrong. My male friends; use it, pay for it if you have to especially if you are over 50 it may save your life.

So after the PSA came back high, my GP ordered another and it was also high in fact it was higher than the first. Now we are worried. I was hooked up with an Urologist, Dr. Chin, who would be come my primary care doctor. After 3 months Biopsies were ordered, 12 samples taken and the results were that all 12 were cancerous. F.....k me! So then I needed a bone scan and a CT scan. You know if it weren't for the seriousness of this disease, the whole process is kind of interesting. Nuclear medicine, cameras rotating around your body, items inserted where nothing ever should be inserted, all to try and get a handle on what is growing inside of me.

It turns out, as mentioned before, that I have a fairly aggressive form of prostate cancer. Prostate cancer is different from other cancers in how it is graded. Most cancers are reported in stages. The lower the stage the early or smaller the cancer is, the higher the number the worse it is. Prostate cancer differs in that it comes in 10 forms. It was explained like this Level one is a slow walk through the park, Level 10 is a rocket ship to Mars. I have a Level 9. Again things differ with  Prostate Cancer in that you never have a 1 that progresses through 10, if you have a 9 it will always be a 9 as long as it is in your body. So the doctors are trying to get things done quickly. We are now in July and it is official it is Level 9 Prostate Cancer! I am going nuts trying to figure out when tests are and what they are looking for and why does it take so long. I expressed my frustration at 2 months to see a Urologist 8 weeks for a bone scan and 3 months for a CT Scan. I was told that those were amazingly short times and short of dying or being critical these were reasonable waits. After the tests I was told to go on my holidays and they would schedule Oncologists appointments. We went away, camping in Eastern Ontario, had a good time with my sister and brother-in-law, away from daily cell phone coverage trying to keep an unworried even keel.

When we got back from holidays, we met with Oncologists, Chemo was thrown out, Radiation was put on hold, hormone therapy was the choice of treatments. Wahoo, breasts, mood swings and hot flashes just what I need after riding all my female friends over the years. ( He who lives by the sword dies by the sword).


This takes us to November, we meet with the Radiation Oncologist, PSA numbers are now below 1 ( at one point they were above 50) and the prostate appears to be shrinking. Time for a CT scan see what those cells are doing.  January 2015 CT scan comes back and the prostate is shrinking and so are the lymph nodes.. WAHOOOOOO! Big high! But, he says and it is a big BUT, we are a little worried about two angry spots on your pelvic bone, lets have another bone scan to make sure there is nothing going on, The bone scan comes back negative, however we suggest you consider taking Chemo as a preventative, we believe by doing this strategy you can continue on a KILL AND CURE course and not a Manage and Survive attitude. Let the next phase of the journey begin........



I titled this piece "The elephant in the room" but made no reference to this in the article. The expression "The elephant in the room" means An important and obvious topic, which everyone present is aware of, but which isn't discussed, as such discussion is considered to be uncomfortable. All of my family and most of my close friends and a few colleagues have known about this affliction, the rest of you are finding out now. One of the purposes of this article is to let you know that it is alright to ask how things are going, inquire about the whole process and be open about the whole deal, in short I'm releasing the elephant from the room.( chiefly because with my ego it is getting a little crowded in the room). Oh and by the way I'm open to gallows humour despite what Brian's wife might think of it's appropriateness


This will be an ongoing blog at least until there is nothing else to report.



BK