Looking for that silver lining

Just a brief update to all on a very stormy Monday in TO (or at least we are prepared for the storm to hit tonight) that my last treatment, Treatment #12, has been delayed.  My platelets have bottomed out again to their second lowest level, 66, in the 6 months of treatment.  The threshold for treatment for my Oncologist is 75 - and the only thing we can do right now is wait...give it time...let nature run its course and generate platelets and red blood cells over time.  

My parents were beside me in the waiting room today after making the long trek down from Guelph when my nurse came into the room to talk to me/us. Remember from a previous post that when they come into the room and sit down beside you that the news isn't good.  If it was good, if all was fine and I was given the green light for treatment they just come to the waiting room door and call your name to go into the Treatment room.  Monique, one of the ONC nurses, was sad for me to relay that Dr. Lingas wasn't going to take any chances with my health and safety and re-scheduled me for bloodwork for one week later - next Monday. After calling Victoria and letting her know the bad news she suggested I inquire about going back later in the week to try again rather than waiting a whole week.  So I spoke to the head nurse at the Clinic, Janet, and asked her if Thursday could be an option.  Although she is not optimistic that three days will be enough to bring my platelets up to a safe level she knows my/our story and knows that this is my last treatment and that Victoria is now 36 weeks pregnant and can really go into labour anytime.  So we will try again Thursday.  Cross our fingers and hope.

Admittedly I began to tear up and got a little emotional in the room when I was given the news...you see...I just want to get them over with...I am really really disappointed.  Every day of delay brings me closer to treatments running into Victoria's due date.  I had hoped to have some weeks of recovery time to at least gain some strength back and be feeling better when our baby is born...to be there for Victoria in labour when she needs me most.  We have actually hired a doula (birthing coach) to offer both me and Victoria additional support during labour since we know I won't be able to physically support Victoria how she will need to be supported.  After all, I can barely hold a pencil / pen in my hands let alone offer them to massaging Victoria, rubbing her swollen feet or provide relief to her physical pains.

So where is the silver lining in all this?  I guess I should feel good that despite all the urgency to finishing these treatments my doctor puts my health and safety before all and will not put me at risk with treatment today.  I guess it is a good thing that at least this week I will feel well enough to join Victoria at the new Birthing Centre at St. Joseph's for our tour of the birthing unit and might be able to join Victoria at the appointment with our mid-wife this week.  That's what I will focus on....these positives.

But man...enough already. Come on, platelets.  Let's go.  I want to do this...to put this treatment and what will be 7 months of chemo in the "Been there. Done that" column on life's ledger.  

Why I fight

Good Monday morning to all...I recognize that it has been a week since my last posting and that in my last post I promised to blog about something completely unrelated to my cancer, treatments, etc. but I want to take a moment to provide a quick update in this forum especially since so many of you have been in touch with me recently to find out how I am doing.  Frankly, this treatment has hit me hard...really hard.  I don't know whether it is because I was delayed a week or whether it is reflective of my suppressed immune system, bottoming out platelets and suppressed neutrophils but some of the side effects have been more intense this time around than anytime over the past six months....particularly the cold sensitivity, neuropathy, fatigue and GI issues.  My taste buds are shot - my stomach has been SOUR and my appetite non-existent.  My hands and feet are a complete mess - I can barely type, barely grip a pen and write - and I hope that they recover although there is a chance that some of this nerve damage can be permanent.  It is what it is.  With the Neupogen injections this time around the bone pain and aches in my spine, hips, legs, neck and skull have been brutal - to the point where I needed to take Tylenol 3 (with Codeine) to help me cope/sleep.  BUT...only one more to go.  Countdown - T minus 1.  Bring it. Let's do this.

Why I Fight

And now that I am done "ranting" let's get to the real purpose of this post...and one of the main reasons why I have kept focused, have tried to stay strong and positive, have put on the game face and faced this adversity head-on and with determination to come out on the positive side of it.  Enough of my talking, enough about cancer, enough about side effects, enough about neuropathy and Neupogen...let's let the pictures do the talking.

Victoria June 6  - about 14 wks

Victoria at about 16 wks

About 18 weeks

18 weeks

21 weeks

29 weeks

27 weeks

30 weeks

33 weeks

Victoria, you are my rock.  You are my best friend.  You have honoured me by being my wife.  You have stood by me and propped me up when things have been so rough these past few months.  You never let me wallow in self-pity or despair.  Those closest to us know that you are the real captain of the Kicking the Crap Crew ;-) You remind me every day what is important in life. 

And soon you will give birth to our baby and I cannot wait.  I am overwhelmed with joy.  You are going to be as wonderful a mom as you are a wife and partner.

Thank you for being you, Victoria.  

Treatment #11 in progress...I think Europe says it best

Well...I may have chemo brain these days and forget things that I am in the middle of doing or forget names or forget where I am driving to when in the car....but my drug addled brain tells me that if I am in the second day of Treatment #11 out of 12 that equals 92% of the way there!!!!  YIPPPPPPEEEEEE!!!!!!!

And it cannot be over soon enough...

So my Dad came into town to spend the day with me yesterday and take me to the hospital and join me in the treatment room (hopefully if all pans out with the bloodwork).  A shout out to Dad - if I didn't have him there and was alone yesterday I probably would have ended up falling asleep early on into treatment and slept through the afternoon in the clinic but we ended up talking about everything from Ontario politics, the XL Foods beef recall, the US Presidential election, cancer, family stuff, Victoria's pregnancy, etc.  Thanks, Dad for being with me yesterday.  You have no idea how much it means to me to have someone there with me on the next step in the journey....when I look around at the other patients in the treatment room it always hits me square in the face that I am the youngest person in the room and by quite a few years.  But I try not to dwell on that fact but it does strike me every time.

The bloodwork came back positive for treatment (Thank, God! - he must have heard my prayers ;-) ) after the week delay.  And as my good friend and fellow battler, Barb so eloquently articulates throughout her blog Bring it On! http://barb-james.blogspot.ca/ delays in treatment, bloodwork challenges that introduce things like transfusions (in her case) or bone marrow injections (in my case), all fuel our anxiety.  And you as you read me say that may struggle to understand in my case why it is so anxiety-evoking especially in light of the really positive news I have received over the past few weeks in terms of surveillance tests (CEA, CT scan)...but I don't want to give the bad cells, those f#$%ers ANY opportunity to do their dirty work.  One week delay in treatment means in my mind that every day that goes by I lose the opportunity to continue to punish them, to have the chemo drugs doing their job, and to keep those bad guys at bay.

My platelets rebounded to a healthy 133 from 59 last week (75 is the absolute lowest count where treatment is a no go decision) and my neutrophils rebounded to a great 2.6 count (up from 1.88).  The platelets were the big concern and short of platelet transfusions there is really no intervention that will increase these counts...just time for them to recover naturally.  So Treatment #11 was a GO.  Because of the week delay I didn't recognize any of the other patients in the treatment room as I am now on my third different treatment schedule - started with every other Thursday, to a Monday schedule to now an alternating Monday schedule.

I don't know whether it is because of the week delay or what but this one is really hitting me hard.  Last night when I came home from the hospital I was sooooooo flippin' tired that I napped for hours until Victoria had dinner ready.  I was able to eat dinner (and what a healthy dinner it was - baked salmon, sauteed spinach, and brown basmati rice with a cup of matcha green tea) and pretty much laid on the couch all evening not feeling so great....but last night's sleep was AWFUL.  My stomach was more sour than ever....in fact to the point of needing to spend hours by the toilet in anticipation of vomiting but thankfully it never got to that point.  I was sooooo weak and feeling crappy that I left the bed so Victoria wasn't exposed to me and ended up laying on the couch trying to sleep.  Sleep was broken with bouts of nausea and just feeling completely shitty.  But I managed to sleep after Victoria left for work this morning to now so I thought I would take advantage of the little energy I have today to update you all.

And btw...my Oncologist is not taking any chances with my neutrophils despite only having one last treatment to go.  I am undergoing another round of 5 daily injections of Neupogen to stimulate my bone marrow (these injections have really been taking their toll on me with the bone pain in my spine, hips, skull and neck).   But oh well....last round of injections.  Bring 'em on.

So that's it for now....I am wiped.  Just typing is a challenge these days (and you can forget about holding a pen or pencil and writing legibly).  I will post later with a message completely unrelated to my cancer and my treatments....stay tuned and thanks for stopping by.

I will leave this post with the words/lyrics from the band Europe and their song The Final Countdown:
http://www.youtube.com/watch?v=AyggY_R3jU8

It's the final countdown
The final countdown
The final countdown
(The final countdown)
Ohh ho ohh

The final countdown, oh ho
It's the final countdown
The final countdown
The final countdown
(The final countdown)

Ohh
It's the final countdown
We're leaving together
The final countdown
We'll all miss her so
It's the final countdown
(The final countdown)
Ohh, it's the final countdown
Yea

Where oh where have my platelets gone?

Today was supposed to be Treatment #11...in fact I went in to the Oncology clinic this past Friday prior to the long weekend to get my bloodwork done to determine whether I would even have treatment today.  My Oncologist had warned me in our meeting to discuss my CT scan a week ago that treatment may be delayed in light of the drop in platelets from my previous bloodwork.  However, the bloodwork from this past Friday came back quite positive.  Platelets had rebounded to 91 (100 is the threshold for treatment but in light of there being only two treatments left there was good chance that we would push on with levels just below the threshold) and neutrophils were 2.05 (1.5 is the lowest threshold for treatment so I should have been fine with this count).  The nursing team told me to come in Tuesday (today) and prepare for treatment.

My sister, Jodie, who lives in Guelph made arrangements to take today off and come down to TO to accompany me at treatment.  She had never joined me previously and with three young girls and a husband at home it was a considerable gesture to arrange to be my Onc buddy for this treatment.  We headed for the hospital for my appointment time of 11am and I asked the receptionist if I was still required to do bloodwork today since I had had it done on Friday and she confirmed that Dr. Lingas (my Oncologist) considered the three day long weekend enough of a timeframe to warrant me having my bloodwork analyzed today. So...another bloodletting and wait in the waiting room that was packed, busy since the clinic was closed yesterday on Thanksgiving Monday.  Jodie and I had a good conversation about the process...about the usual routine for treatment. Then, one of the nurses, Michiko, came in to the waiting room and sat down beside us to talk about the bloodwork.  As soon as she sat down beside me I knew the news wasn't good - you see, if you are cleared for treatment the nurses simply come to the door of the waiting room and call you into the treatment room.  And the news isn't good.

My platelets have dropped to a dangerous count of 59.  This was a significant drop over the weekend and represents the lowest they have ever been since treatments began in May.  Of more importance this level means I now suffer from chemotherapy induced thrombocytopenia.  This condition makes me at a significant risk for bleeding as the clotting factor in my blood has been compromised.  It isn't quite at the dangerous level for internal bleeding but the downward trend is alarming and needs to be monitored.  (http://www.chemotherapy.com/side_effects/platelet/managing_platelet_count.html) It also might be why I have been so friggin' fatigued inside my bones - basically I have no strength.  None. Nada.  And no stamina.  Climbing stairs is almost embarrassing for this once physically fit male.  My hips ache, my knees and legs have no energy or strength.  I sometimes even have to grab the banister to pull myself up - when noone is looking of course.

My neutrophils dropped to 1.88.  This is above the lowest threshold for treatment but represents a significant drop in three days even after a round of Neupogen injections the week previous which are meant to stimulate my bone marrow to produce neutrophils.  So the downward trend is alarming and makes me immune compromised...at risk for infection, fever, illnesses that would otherwise be warded off in healthy individuals but unfortunately can pose a serious threat to cancer patients like me whose immune systems are compromised.  A simple fever or infection is an Emergency room visit.  Admittedly I have been seriously fortunate all things considered for the course of treatments...I haven't yet succombed to any flu, fever, sickness in the 5 months of chemo on top of the side effects of the therapy.

What does it all mean?  Well it means that I was not well enough to continue treatments today.  In fact, Dr. Lingas has requested a delay of an entire week for the next treatment.  Damn.  I am trying really really hard to focus on something positive but it is tough to do so.  I guess I feel very fortunate that my Oncologist insisted on doing bloodwork today even after having it done on Friday and that she is putting my safety and health at the forefront.  Delays in chemo treatments are crappy.  Ironically we cancer patients want to get through these treatments according to the prescribed schedule for maximum efficacy - the protocols are designed with a schedule that sets dosing and cycles of treatment to maximize/optimize their results.  My attitude from day one has been let's go....full dose...manage the side effects as best as can be but stick with full dose to optimize the results.  Kill the beast...do their job.

So I will cling to the positive that my safety is top priority and accept that treatment #11 will have to wait another week.  That means that my last treatment will be at minimum October 30 and possibly not until the first week of November.  Victoria's due date is November 27.  With treatments going into November we are both sad, anxious, desperate for the end of the treatment cycle.  I soooooo badly want...no...need to be stronger and feeling better than I have been when the baby arrives.  I have no idea how long it may take for me to recover from these treatments...I would imagine some side effects will take much much longer to resolve themselves if they indeed do such as the peripheral neuropathy, mucositis, fatigue. And now to add to the list my fingers are a complete mess...I mean they are a disaster...it is painful for me just to type this blog post.  The nails are disintegrating and my fingertips are constantly in nerve pain.  My chemo coach, Aunt Diana, has "warned" me about this possible side effect and it has now come into effect full force in the past month.

It is what it is.  Treatment #11 will have to wait a week....but then there is just one left after that.   The end.  No more chemo.

So in tribute to my friend and fellow battler, Barb...BRING IT ON.

And the survey says...I mean Surgeon says...

So yesterday I met with my Surgeon, Dr. Hart, for my post-CT scan, 6 month post-surgery, follow-up.  I went into yesterday's meeting buoyed by my meeting with Dr. Lingas (my Oncologist) the previous Thursday but still anxious...anxious that Dr. Hart and Dr. Lingas are on the same page and that my CT scan showed nothing of worry to my operating surgeon, to the doctor that had originally resected my colon with urgency in  March and intervened upon diagnosis on that fateful day in March.  Although I emotionally was so relieved on Thursday I spent the entire weekend processing the CT scan printout, processing the discussion with Dr. Lingas, processing these "anomalies" on my lungs and liver and trying really hard not to worry.  Unfortunately I physically felt lousy this past weekend as the Neupogen injections really hit me hard this time around...or at least I blame it on the injections to stimulate my bone marrow to produce WBCs / neutrophils.  Maybe it is that my platelets have dropped considerably (81 on the last blood analysis) and are approaching danger zone territory.  Whatever the cause my lower back and spine were in constant spasm, my hips and legs ached, and my appetite wasn't great.  Tylenol would only take the edge off my bone and nervous system pain.  But such is my life these days - only 2 more treatments and rounds of injections to manage through.  Bring 'em on.

Within moments of seeing Dr. Hart I was at ease.  He suggested that in light of what he saw on the scan that there was nothing to worry about and that next surveillance from a surgical / post-surgery perspective would be a colonoscopy next March - exactly one year from original diagnosis and surgery.  He also suggested that  our respective meetings from this point on were really just social visits since there was nothing clinical to discuss - the CT scan, the bloodwork, all are pointing to good news at this stage.

So...now that my appetite has returned and I have received great news from both my Oncologist AND my Surgeon I think it is time Victoria and I really celebrate...with a good meal out...maybe Indian....after all we both LOVE Indian cuisine and it is cancer friendly with all its spice.

In terms of upcoming treatment(s) that is really the only bad news we received this past week.  Unfortunately as I indicated previously my platelets have dropped to the lowest point for me during chemo and there is a pretty good chance that my next treatment will be delayed for some time until they rebound.  I will go in for bloodwork before the weekend to see if indeed the platelets will be too low for treatment scheduled on Tuesday following the Thanksgiving weekend.  Hopefully the delay will only be a few days and let's get it done with sooner rather than later.  I so badly want to recover some strength before our baby is born and really " be there" for Victoria and our newborn.  After all November 27 (our official due date) is just around the corner....

In honour of the upcoming Thanksgiving weekend I hope that everyone who has taken the time to stop by and read my blog finds themselves surrounded by family, friends, love and laughter and finds something that they are truly thankful for and acknowledges it.  I know I am thankful for so much now that this will truly be a celebration and a time for me to give thanks.