this is later

It has been quite sometime since I have added anything to the blog and that for me is a good thing, no news.  Since Boston I have been training for my third kick at Ironman Canada in Penticton BC.  Training went well with no fatigue or any lymphoma related concerns!  Here is my race report for the day...

Ironman Canada 2012 report

Pre-race

Up and at ’em early, Lori woke me a little before 3:30 this morning, she has been up for a bit, the coffee is ready and the oatmeal is cooking.  Usual morning stuff shower, shave and go through race check list; have breakfast and a few cups of coffee before heading out to body marking  just before 5AM.  A somber walk down Lakeshore Blvd to Main St; give Lori a hug and a kiss then enter the marking area.  It is still dark out and there are hundreds of athletes wandering the street looking where to leave their special need bags and for a felt marker wielding volunteer who will write our number on each limb as well as our age on the left calf; I guess the number is in case we lose a limb during the event and the age is to help us decide whether or not to try to pass the person in front of us during the bike and run.

Marking done head to my bike to do the last minute check, I hand my pump and bag off to Lori and then wander around the transition area for a bit, planning my route from the water to the change tent to my bike and out; noting the port-a-potties that are along the way.

Race Day

Pre-swim

Bathroom line ups are as usual around 30-40 minutes long so I hop in one and wait my turn before putting on my wetsuit and heading down to the water for a final goggle check.  There is an odd hum in the air as nervous conversations can be heard from all directions and Steve King is chatting over the PA system about this person and that person, all very interesting stuff but it just blends in to the mix of noise surrounding me.  I look over the crowd of athletes and spectators to see if I recognise any of them, I don’t so it is out for a swim to loosen up before the start.  I chat with a few folks around me as we all wish one another a good race and joke about saving the other a slice of cold pizza.  The water is flat and calm; I line up about five rows back in the centre of the group in a straight line to the route.

Swim

Finally the start is here, no howitzer this year it’s an air horn instead; at the sound of the horn we all take off.  The first 200m or so are always a challenge with folks stopping and starting repeatedly trying to find their space in the water; this year was the worse one yet.  A very rough swim start that never really let up, it was like swimming in a washing machine the entire way.  I don’t believe I was able to put more than 8 full strokes together and even then it was only once or twice, the rest of the time I was constantly being bumped or crowded out of my line.  Still I finished in a pretty good time 1:12:11 which is not quite as good as 2010 but better than 2008, I am very happy with this time especially considering the rough conditions. 

Bike

After shedding my wetsuit making my way through the transition zone and making use of an empty port-a-potty along the way to my bike, smile and wave to the camera and of course the cute photographer behind it (Lori); then I am in the saddle and peddling a nice easy spin to get my bike legs under me, drinking lots of fluids and getting focused for the six hour ride that lies ahead.  The first section goes as planned and I am on McLean Creek road and climbing the first hill of the day, I grab some perform at the aid station and hear a loud crash from behind me.  I take a look over my shoulder and about three bikes behind me two cyclists have bumped into each other and are on the ground with more bikes coming their way, I don’t look long enough to see how many are in the pile up or if anyone is hurt; I am just glad I was ahead of this mess.  The descent into OK falls was good, nice and relaxed with no crowds around me and getting up to 60Kph while being in control.  During the flatter section out to Oliver I am able to hold my pace near 38Kph but my lower back is beginning to get sore so I decide I will stop at the aid station say hello to Bob and take a couple of Tylenol.  Then off to Osoyoos and Richters’ Pass, the first of two mountain passes on the day, I manage to maintain a pretty good mid-teens pace on the climbs and reach 70Kph on the descent; I am still on track for my 6 hour ride finish.  The rollers are next and they require timing on the descents to set up for an easy climb up the next hill, but unfortunately in the valley of the first one there is an aid station setup on a narrow section of the road and due to bikes and traffic trying to get through we have to come to a near halt to get through and all momentum is lost I have to work to get up the hill and I never got the rhythm of the rollers back.

Rollers behind me and Cawston just ahead my bike computer decides to go on the fritz and stops working, I no longer know my speed and decide to ride by HR instead.  I am feeling pretty good through the out and back to the special needs station where I grab a replacement fuel bottle and have some sunscreen applied to my shoulders and neck as the water has washed most of it off and the sun is now out, I need to use the washroom but the line is too long so I will wait 20KM until the next one.  My stomach begins to grumble about only having liquids in it or perhaps the heat??? But it is distracting either way and I lose focus, speed and precious time all the way to Yellow lake road and the second mountain climb where I struggle to reach the top but see my friends along the climb and this makes me smile, Shelley is even out with her bagpipes and pipes us up the hill, thanks for that. 

The climb is done and now I can relax, recover and hopefully regain some energy for the run as I start the descent down the series of hills that lead to Skaha Lake and into Penticton; I am now about 20 minutes behind what I was hoping for in my bike time and there is a strong headwind leading me in to the transition.  As I approach town I see Tim on his way out (at McDonalds) on the run and he is looking pretty good and relaxed, Go Tim Go…

I hand my bike over to a volunteer and grab my running bag head to the change tent get ready for the run; away I go after a 6:22:33 bike I am behind but feeling better now and ready to run.

Run

The first few KM are clumsy and awkward as I slowly get my running legs under me, I have a bottle of perform in hand and I am controlling my pace so the legs come back fairly quickly.  Michael is just outside of town and decides he is going to run alongside me and chat with me; this is a very welcome distraction.  By KM 8 I am into my pace and will run around a 5:20/KM walking up the steeper sections of the hills and through every other aid station until the last 10K when I hope to be able to run the rest of the way.  This plan goes well and I am having fun while passing lots of folks on the run and getting comments like looking strong and great pace, I thank them and keep moving.  I have been packing my jersey pockets with ice and putting sponges of cold water on my head at every aid station to combat the heat and my sore back, this feels amazing and helps with the heat and discomfort but has gotten my shoes and feet wet and I can feel blisters building on my big toes with every stride; these are going to hurt over the race.  I see my coach from 2010 during one of my walks and say hello and we have a brief chat before the hill is done and I start to run again, thanks Kelly,  it is always great to see you out on the course.  Near the 30K mark I need to use the bathroom again and this throws my legs off for a bit but I recover and am able to get back to my pace in short order.  With 7 KM to go I decide I have some energy left and start to pick up the pace a bit going around a 5/KM with a couple of sub 5’s as I can now hear the finish line and almost taste the beer.  Before I know it I am back on Lakeshore and looking for Lori; there she is with our friend Evan, I hand off my visor and glasses head to the turn around and then to the finish line passing people and trying to find a spot where I can assure myself of a good finish photo this year.

The run is over 3:57:14 and the race is over 11:43:53 as I cross the line in a new personal best I smile and think to myself take that stupid lymphoma, I win…

Post

A couple of very nice volunteers (father and daughter) help me through the finish area grab my finisher hat and shirt, and get me to the finisher photo area then to the medical tent so that I can have my blisters looked at; they are not as bad as I thought (did not burst) so I leave the tent without any treatment and go grab some cold pizza and recovery drinks before trying to get to my bike.  This took forever and was very confusing as the finish area has changed from last time and no one seemed to know how I could get to my bike… I finally get there and Lori is waiting by the fence, you cannot imagine the smiles on our faces.  We discuss how and where we will connect to head back to the motel but again I have difficulty in the finish area; we miss each other and I walk back to the room alone then text Lori when I get there.  I have part of a beer some munchies, a shower then head out to cheer the other competitors on as they finish their race, I am more than just a bit sore but it is great to see our friends finish the event all of them surpassing their goals and all of them with BIG smiles on their faces!  Time for bed…

After this I took a few days rest and then ran the McNeill Bay half Marathon a couple of weeks later and actually pulled off a personal best at 1:29 for the 21.1K so I was very pleased.

I am resting now with a focus on getting some things done around the house and doing whatever I can do to help my wife get ready for her run at Boston this year...

Boston done and I still have my chip

Well it was a hot day out there and I don't have the energy for a full report but wanted to let you know I have finished and still alive!!!  I have a new medal to hang on the wall and a couple of small blisters, no trip to the medical tent and no issues other than having to slow down a bunch to get past the heat.

More details later but wanted to say thank you all for the best wishes for today.

more later I promise...

Boston Marathon weather update

well the forecast has come down a couple of degrees from yesterday... will see what it is like tomorow.

Wish me luck

Boston Marathon heat advisory

We have spent the last couple of days in Boston after our very pleasant flight.  Picked up my race package yesterday and met with the Doug's, Shelley and Cathy.  Today had lunch with Leonard and his running wife Charlene.  Len told us about the athlete advisory for race day Monday, due to the high heat (31'C) only the fittest runners should attempt the race and even then they should be adjusting their goals.
I will play it by ear but for the time being I still plan on running the event and going out at a good pace early on in the race, but slow down once the heat climbs.  No personal best here this year but I do plan on finishing... I figure if I can get close to the 25 or 30 KM point before noon and the really warm temperatures I should be able to slow down and enjoy those hills just ahead.  We are still a few days out from the race and the weather forecast is likely to change but that is my plan for the time being.

Boston Bound?

Well after a bit of a rough weekend with what was very likely a nasty flu/bug, I was in to see the GP as I was concerned that my symptoms (which are better not discussed in polite company) were related to my lymphoma or my Gallbladder.  I was informed that it was very unlikely to be related and most likely a bug or the nasty little flu going around lately, but either way I was dehydrated and needed some blood work to make sure all was as expected.
I have had a quick look at my test results and although I am not a doctor they all look very good to me so I am going on the premise that Lori and I are leaving for Boston tomorrow and I will be running the marathon next Monday April 16th and unless the GP connects with me tonight we are leaving the house in our friends very capable hands and heading out in the morning.
If you are interested , you can track my progress through the marathon by going to www.baa.org and using the track an athlete area follow bib # 8391 starting at 10AM EST.  I am hoping to do the race in around 3:15 but will happily take whatever the day brings me.  I am not bringing my cell phone with me but will be updating the blog while I am there as well as having access to my email and texting through Lori's phone.
I guess for now that about covers things so cross your fingers and send me your good thoughts for Monday as I am going to need all I can get...

Cheers
Don

PS thanks in advance to our drivers who are taking us to and from the airport!

delayed news

Due to some technical issues at home I have not been able to let you all know about the latest bit of news.  during my last GP appointment I was informed that I have a 2.5cm gallstone; which has been the likely cause of much of my discomfort.  This is very much a relief and it was nice talking to the GP about something else for a change.  The gallstone was noticed on the review of the ultra-sound I had done a few weeks back,  so I am waiting for a time to see the general surgeon and have the discussion around what to do; meanwhile I am continuing to prepare for the marathon in Boston and doing my best to stay healthy and strong.

an update from the oncologist

Well...I know it has been a few days that I have kept you all waiting but I had to figure out what I needed to say so here goes.
We met with the oncologist on Thursday and were in with him for around an hour or so discussing the blood-work, ultrasound, new lumps in my neck area, running and of course the elephant in the room treatment options and timing. 

Blood-work: yes the numbers have changed but nothing that "wows" him, certainly we will continue to keep an eye on my platelet count but it is not near the worrisome range at this point.  The other markers of interest are as it turns out not that interesting, so no need to discuss them (they are only slightly out of the normal range).

Ultrasound: the ultrasound showed that my spleen is a bit larger than it has been in the past, still not huge but definitely enlarged.  I asked if I should be concerned about it being below my ribs and exposed and the answer was no not for running or cycling as there is not a great deal of it exposed.  For the mass swim in Ironman I will use some protection to cover it.  Ultrasound is not as accurate as a CT scan but my GP and I did not want to have more exposure to the radiation unless the ultrasound indicated it was necessary.  Nothing really to worry about here either...

New lumps: I have some new little lumps in my collarbone and neck area that are the size of marbles and are an annoyance when I shave as well as a constant reminder of my lymphoma when I wear a buttoned shirt and tie (most days), or when I shower (also most days); but, I have already been diagnosed as stage 4 and even though this is evidence of the spread into other areas I am still stage 4 so medically no change.  This is tough on me mentally though as I now have constant physical reminders that I am sick.

Running: Lately I have been feeling fatigue during and after some of my runs, especially when I push myself during speed work, hills or races.  On some of my workouts I have had to call it a day part way through because I just could not go on and in a few of my recent races I have had to take walk breaks during the race but have been able to finish very strong and have come very close to previous race times for the distances.  We asked if my pushing myself in this way was contributing to the spread and were told absolutely not and that I should continue to train and pay attention to my body as I have been.  Look out Boston, here we come...

The elephant: this is the tough part to type to you about because so much gets lost when I type compared to talk to you but we simply cannot phone you all...only because I am an athlete am I noticing any symptoms from the lymphoma, this is also the only reason they are even considering treatment at this time.  They do not want to risk me losing interest in running or exercise and so correctly concluded that it is having a negative on my life and lifestyle; which is one of the reasons to begin treatment.  The treatment being discussed is chemotherapy, specifically CVP+r.  The standard for this would be 8 courses each of 3 weeks where the first week involves the chemo and the following two are recovery weeks, so 6 months of treatment.  There are side effects of this treatment as you can well imagine and some potential for some to be long term, such as neuropathy.  I know the question on your minds "will you lose your hair?", well; this form of chemo can cause thinning of hair so if I have treatment I probably will  be able to keep the ponytail!

The plan:  is like this, I will contiue to train for The Boston Marathon for this April, come back have some blood-work done and see  the oncologist to review.  Assuming all is well I will begin to train for Ironman Canada for August, and again have tests done and review and perhaps if it is required begin preperation for treatment in September or so depending of course how I am feeling and what the tests show. Meanwhile Lori and I will talk to or read about people who have been through this or something similar, focusing on athletes to hear their stories and outcomes of either defering treatment or having the treatment, the impacts on their fitness and of course the lives and relationships.  If you know of anyone who would be willing to talk about their experience or of an online resouce, books or whatever please let us know.

Many thanks and we will type to you soon.

a quick update

I was at the GP's last week and found out a few more details around my blood work and we have a bit of a plan, first a few of my markers were a bit high and I mean just a bit out of the normal range, also my platelets are down a bit again.  There is also some indication that my spleen is a bit larger and I have an ultra-sound this week to take a look at that.

The next week looks like this; blood work tomorrow, ultra-sound Thursday and in to see the oncologist next Wednesday with GP calling me when he receives the details from my ultra-sound. 

The Hatley 8KM went very well for me this past Sunday as I finished only 30 seconds off last years time and placed 5th in my age group while averaging 4:21/KM over the hilly 8KM, next race is the Cobble Hill 12K followed by the Bazan 5K.

Until next week take care...

Cedar 12KM done and dusted

Well I mentioned on Saturday that Lori and I were heading up island to Cedar to run their 12K as part of the Island race series.  Here is how it went, we picked up our friend Kathy and headed out for the hour and a bit drive to the race.  I was not feeling 100% but also not feeling too badly either, I have a bit of discomfort just below my bottom left rib.  Lori too has had her running challenges lately, she has a slight pulled hip flexor and took a bit of a tumble on a training run bruising and scraping her left knee. 
We both ran within ourselves and finished within a minute or so of what we had targeted, I finished in 52 minutes and Lori in 1:08 while Simon Whitfield won the event in 37 minutes; so I guess we will need to run a bit better if we are going to challenge him next year, but hey we can officially say that we have now done multiple races with Simon.

We have had a few calls asking about the follow up from last Thursday and we thank you for the support.  So what is next?

Simply we do our thing until the next appointment and go from there.  GP appointment is on the 16th, this is a regular appointment to stay in touch with him and keep an eye on how I am doing general health wise.  Blood work on the 22nd followed by an appointment with my regular oncologist on the 29th.

I will keep the blog current  not only on appointments but also on any changes on how I am feeling.

'til I write again

2nd quarterly follow-up with Oncologist

Thursday February 2nd was the day of my second follow-up appointment at the BCCA but first I had to pick a few friends up from the airport.  They were fresh from Hawaii and looking tanned and cold as they arrived in Victoria.  While waiting for them to clear customs the agency called to let me know that my oncologist was sick with the flu and I would be seen by another doctor at the same time.

I arrived at the agency and checked in and in no time the doctor was in to see me, told me that the results of my blood work were good and then asked if I felt any new symptoms, I mentioned that the nodes around my collar bone and next had flared up in late November and although they are quite small (jelly bean sized) they were a bit troublesome, as well as I have been feeling a bit fatigued for the last couple of weeks but that it could be due to the season or the snow shovelling.  She asked several times if I had had a cold or fever lately, I haven't and she continued with the physical exam noting my spleen and a few other sights of interest.  I commented that my spleen has been enlarged since I was diagnosed and that it had never gone down in size she flipped through my chart and agreed.

We discussed the exam and she told me she would review this with my regular oncologist but that the fact that the appearance of inflamed nodes above my diaphragm in combination with the fatigue meant that it may be time to discuss treatment.

I was dumbfounded! 

The rest of the day was a bit of a blur as I processed the mention of treatment, let me mention that I did discuss the treatment options with the doctor today and really there is only one for me and that would be chemo, although there are a few options within chemo it is still chemo (+?).

I have now had a few days and some conversation with Lori and friends, I will discuss it with my GP in a couple of weeks and then again with the oncologist after that.  I'll keep you all current on the discussions and how I am feeling, for now I am focusing on the Cedar 12KM run tomorrow and the Super Bowl.  Then Monday followed by Tuesday etc...

Catch-up

Well I guess I left you all hanging for a while after my last entry and follow-up appointment with the oncologist and for that I apologise; here is a quick catch up.
The results of the CT scan show that everything was the same or slightly smaller than previous scans so this is good news, especially the spleen as it did not change I am less concerned that it is peeking out a bit from my bottom rib.  The stomach issues have cleared up and I have stopped taking the medication for that as it was likely (in my opinion) due to anxiety of having to see the oncologist, I see my GP every month or so and all is good on my health front!
Bass lessons are continuing and I am actually putting a few notes together and some folks can even tell what song the notes are from, that is what you get for having a good teacher.  I have a new amp now and am practising regularly so improvements are just ahead...
Charity fund raising is in the works, although I am not quite ready to share any details just yet.

I have had a bit of time to consider my health over the past few months and have had some ups and some downs (mentally) I know that I will not hear that my cancer is "gone" and I am cured, which is a down and plays little mind games every once in a while.  The flip side is that I wake up everyday!  This sounds like a simple thing but what it means is that I am alive and while that is true I am doing well and winning my fight.  Since July now I have only had two or three bad days where I did not feel well and I think most of you have likely had the same or more??  I am glad to still be at a point where I do not need any treatment and that other than the odd day where I feel the "why me" I am doing very well.


Thanks to all for reading this and following along with Lori and I.

First quarterly check-up

Wow three months just zipped by.  I have been feeling really well since Canada Day weekend; which is why I have not written much. 
So first a bit about what I have been up to, you already know about me signing up for Ironman Canada for August 2112 I am also running the Victoria marathon on October 9th and hoping to have Lori pace me in just under 3:55:00 (fingers crossed).  This week I have also officially signed up for running in the Boston marathon based on last years Victoria marathon finish (3:17:36) we are very happy about this!  I have also decided that I should be using these key events to raise some donations for cancer research so will be very shortly putting a site up linked to the BC Leukemia and Lymphoma Society as a third party fund raising site, more details to follow on this.   In other news yesterday I bought a new to me bass guitar which I am also very pleased with and am looking forward to our friend Doug teaching me a bit of what he knows.

So back to the health check, as I was saying for the past while I have been feeling great; except for the last couple of weeks.  During this time I have been feeling nauseous and on the verge of throwing up, this left me a bit nervous going in to the oncology appointment.  I had my blood tests a few days prior to the appointment and on Monday found out that they had come back perfectly normal!  This is very happy news.  In talking to the doctor about my test results and my stomach issues we agreed that the nausea is not likely related to my lymphoma, more good news.  He gave me a prescription to settle my stomach down and I am going in for another CT scan and more blood work along with a few other tests to rule out the possibility of Lymphoma being the cause of the problem.
Tomorrow I have an appointment with my GP and we will review everything and see what he can come up with as the pills helped for the first two days and although I am not feeling as bad as I was the last couple of weeks I have been feeling nauseous yesterday and today.

More updates to follow as I get my test results back and we figure out what is going on.  Also I will post my marathon results, links to the fundraising site and likely a photo of my new bass.

IMC here I come

Well, after consulting the GP and Oncologist and of course getting the OK from Lori (my wife); we have all agreed that Ironman Canada 2012 is a good thing for me to do.  Yesterday myself and six fellow binner's (www.bin-tri-n.com)  signed up for the event in Penticton, so now begins the year of preparing and training for my third Ironman Canada competition. 
This one will be focused on my diet/nutrition and my sleep/rest periods so that I remain healthy through the training and the event.  I plan on keeping this blog up to date with my progress and promise all of you that I will listen to my body and not my training schedule.

More to follow on this next chapter of my kicking lymphoma square in the nodes!

physically doing well; but mentally???

Well as you all know the doctors have told me that I am fine for the time being and I should continue about my life as normal, well I put them to the test.  I called the oncologist office the other day and asked if they considered training for and doing another Ironman Canada as being normal, the answer was no concerns and no objections...
So later this month I am heading to Penticton to register for next summer's Ironman Canada.  I know most would not consider this as normal behavior and certainly not what someone with cancer would be doing but as I mentioned in the title my mental health has been in question for a while now.
This for me is great news as it means the doctors believe that I truly am healthy and can really go about "my normal" life.
Lori is very happy that I have a new goal and some direction for my energy to go in rather than another renovation at the house.
More to follow but wanted to share the good news.

Long Time No Type

Well I am a bit behind on this blog and for that I do apologise.  It has been an eventful week for us and I have a fair bit to share so grab a coffee or a tea get comfortable and read on.
Last time I wrote was around my bone marrow biopsy, an uncomfortable experience that I hope none of you have to go through.  This week I had my second oncologist appointment to review the results of the biopsy and go over a few other things that have been nagging at me.
I had been told that there was roughly a 70% expectation that the cancer would be present in my marrow; after all, I do have a type of blood cancer and it is involving my white blood cells and marrow does have a lot of both of these things.  Well the results are as follows; I do have cancerous cells in my marrow which takes me to a stage 4 cancer due to the fact that it is in my marrow, the amount is VERY low at 2-3%.  This does not change anything at all it only finalises the staging; Grade1 stage 4 follicular non-hodgkin lymphoma (fl-NHL).
 The other concern I had was the fact that on both CT scan reports they had mentioned that my spleen was enlarged, apparently spleen sizes vary from person to person but up to 12cm is average for a white male adult athlete and mine is about 18cm.  The concern is that since it is enlarged it has moved out from behind the protection of the ribcage and is sitting just below my bottom rib.  So no more contact sports for me and if I ever get a blunt force trauma in the area I go directly to emergency to have it checked for a rupture.  I discussed this with the oncologist and we will monitor my spleen and if it gets too large then we will treat my lymphoma since that is what is causing the increased size.
Treatment options?  Well as I mentioned in previous notes the options are fairly limited, watch and wait, radiation, or chemo.  Chemo is overkill at this point since my symptoms are not too bad and the impact to my lifestyle is not that great.  Radiation is also out for me due to the fact that some of my involved lymph nodes are around the lower portion of my Aortic artery there is a risk that the artery could be compromised and since I run and compete in triahlons we definatley do not want to risk a blown artery.  For now watch and wait is still the course of action.
 I have mentioned to some of you that I have been doing a tonne of research into other forms of treatments and one in particular involving the use of a commonly used anti-bodi as a stand alone treatment rather than being combined with radiation or chemo as it is currently used today.  There have been a handfull of smaller studies that have shown this to be an effective treatment and in a very small percent of cases actually cure a persons fl-NHL.  These studies are fairly recent and not proven studies and although some countries are recommending this as a first line treatment Canada is not one of those countries and I am sorry to say that it is not a standard treament in BC and therefore not funded.  This was a bit dis-heartening to hear but as I listened to the doctor it is beginning to sink in, I will very likely not require any treatment for many years to come. 
We have reviewed all of my test results, which there have been many.  At last count 48 vials of blood for tests and the like in the last three weeks alone.  The results are that I am a very healthy person and aside from having cancer there is nothing wrong!  All but one of my blood markers was in the middle of the normal range and that was my platelet count (the portion of your blood that allows it to clott) these were a bit low.  I think it is because they are tired from having so many tests done and working so hard to stem the flow of blood afterward.  There is no risk here as it was only a bit low and I do still clott quite quickly.
I have also been to see our GP a couple of times and he agrees with the course of action reccomended, we have had a few coversations about it and I am feeling pretty good about the decsision now, at first I was upset that they were just going to ignore it and leave me to live with it as they went on to their next patient, but after giving it much thought that is not the case at all!
The concern around treating me is based on my quality of life and since I have only had a very few bad days symptom wise and this has really settled down in the last week, and since the affects of the two other treatment options would seriously impact my quality of life and still not cure the fl-NHL we are going to pay close attention to any changes and act on them when appropriate.  Part of this approach is having some intellegent precausionary treatment done like getting my Heppetitis A&B shots done since there is a possible connection between the two blood diseases, we are also going to increase my visits to the GP as well as having regular blood work done and seeing the oncolgist every three months.
I am told to go about my life as per usual, so for me that means getting back out running and cycling, I am going to start running with my wife Lori a couple times a week plus one other time to see if I can get my speed back a bit.  We are hoping to run the Victoria marathon together and get her qualified for Boston so we can both do it this coming year as I qualified last October; then the Island Race Series begins in January.  The cycling season is pretty well under way and I am not in any type of fitness to keep up with any of my riding buddies so I will just do some light easy pedals this summer and wait for them to get back out-of-shape over the winter.  I think I still have a couple of Ironman distance tris in me and need to sort that out as well, for now I think New Zealand is next but when?
Since there is really not too much to say on a regular basis I will not be posting here very often; only when there is a change or something to say.  I will keep you all informed on my regular visits to the docs and of course if my health changes I will post about that right away.  I am doing just fine and although my life took an unexpected detour for the last 5 months or so it seems to have gotten me back to the main road and I am on my way again.  This blog will be a no news is good news blog!  If there are any questions you still have unanswered please connect with me directly or leave a comment on the blog and  I'll answer it there.
So I guess this is it until the autumn when I have my next appointment with the oncologist, talk to you then and enjoy the rest of your summer.
Thanks for reading,
Don

Did you get the name of that horse?

Oh ya, Charlie!
I have never ever had a Charlie Horse like this one.  Man is my leg stiff today, not painful just stiff.  I am sure it will be back by tomorrow just in time for Canada Day aka Dominion Day.

Happy July 1st all

enjoy the long weekend!

Bone Marrow Biopsy day is here

Well, I have not written too much about this because I really was not looking forward to it and kind of hoped that if I did not write about it they may cancel it.  No such luck!
It was this morning and Ray & Dar came to pick me up and take me to the Jubilee to have my blood work done then the biopsy.  We got there in what I thought was plenty of time only to discover the the lab was busier than normal and had recently had a software upgrade which was of course slowing things down even more as the staff had to learn the new system (rotten IT folks always changing things).  Hey, only two viles of blood today that makes around 30 in a week my personal best to-date. 
Next is the biopsy in a second lab and now instead of being 20 minutes early I am 20 minutes late, I hope this doesn't mean they'll skip the freezing to make up for time... no problem they are running a bit behind as well.  I get called in and here is what happened next.
A very kind lab tech explained the process to me and asked me a few now common questions, do you have any allergies to any medications? latex products? Are you on any blood thinners? and a few more that elude me at this moment.  After the tech was happy that I understood everything correctly and that I was at ease with the process she paged the doctor who came in a couple of minutes later.
The Doctor was also very pleasant and comforting and told me what was involved with the biopsy and then asked me similar questions, my answers did not change so I think I passed the test and this is what I got from the two of them telling me about the procedure.

I will lay on my left side with my shorts lowered just below my hips, the doctor will position me and place some towels and cushions to prop me in position.  Next the area will be sanitised and a topical freezing will be applied, followed by a few additional freezings each a bit deeper until the area around the bone is frozen.  This all takes place just above my hip joint on my right side.  From here she will insert a small needle into the bone and extract a liquid sample of my marrow.  I am told that this is the part that people find uncomfortable or unexpected; next she will use a slightly larger tool (about a pencil lead size) and get a solid marrow sample.  Once they have confirmed the samples are good she will clean and dress the area, and I get to relax for fifteen minutes or so, in order for them to ensure the bleeding has stopped.  There are no stitches to worry about since the incision is so small.

So that is what is I was told to expect... and it did happen pretty much as described.  The doctor followed the above process all the while making small talk with me to make sure I was still OK and "comfortable", this was a pleasant distraction as we talked about running, work triathlons and food.  The procedure was going very well until she said OK I am going in for the liquid sample now on the count of three you may feel that discomfort I told you about, 1, 2, 3.  Wowzers discomfort? It felt like a tooth the size of my head with a sensitivity to cold had just been dipped into a bucket of ice cream, this only lasted for a few seconds and I didn't even cry or scream like a three year old (I am so proud).  There she said that's the worst of it now to get the solid sample, I could feel her pressure on my hip and could sense the rotating movement she was making as the talk about sports and hobbies continued.  She commented on the strength of my bones and how it had been expected due to my age and the sports I do, then she said she was just going to lower the table a bit. to which I said leverage? she gave a quick yes response and a moment later said she was through and going to start collecting the sample.  This was uncomfortable but not really painful at all. The work was done and now to confirm the samples, OK.  Clean and wrap the area.  All done, now relax for fifteen minutes while laying on a tightly rolled towel to apply pressure and reduce bruising.
I felt pretty good afterwards so gave Lori a call to report in and then took Ray & Dar out for lunch.  By the time lunch was done so was the freezing and I really appreciated its role in the entire procedure and am a bit less proud of my accomplishment of not crying so now can I go home a lay down?
Wow, is my hip sore!   I am not tired but it hurts to move around so it is movie time... to the media cave.
Jim is taking Lori to her guitar lesson tonight (thanks Jimmy) and I am resting "comfortably"...

Research update

I have been searching other treatments, both "western" and "complimentary". 
On the medical side of things all my research is telling me that the oncologist was correct, except for one potential newish form of treatment which suggests that certain anti-bodies may help me or even have a very slight chance of curing my lymphoma.  Now before we get excited remember I said that this was new, and has had only a handful of early clinical trials and still lacks solid evidence of its worth (medically speaking); but, it is certainly worth bringing to the attention of the oncologist and having the discussion.  Thanks to my sister-in-law I have a few articles to bring to the appointment to start the conversation.
On the complimentary side of things I have found some suggested practices I can include such as, meditation, exercise, yoga, message and therapeutic touch therapy.  I have been told  to initiate by my doctors to resume my active lifestyle so back to cycling and a bit of running. Check!  I have also started a weekly touch therapy session with a neighbour and friend so check on that as well.  Yoga, will have to wait until after my bone marrow biopsy is done but soon.

Catch-up time

So what has been going on?  Well the day after my oncologist appointment I had a follow-up appointment with our GP, during this we discussed a number of things including my treatment "options" and we basically came up with the same options and rational.  Chemo, too big of a hammer for this stage, radiation, may impact my aortic artery as one of the regions of impacted nodes is in the para aortic.  watch and wait??? hmmmm I still don't like it much and will use my old friend the Internet to help me look for a fourth or fifth option to bring forward to the oncologist.
We also discussed the results of my many sessions of blood work, turns out that lymphoma sometimes involves hepatitis and I show no sign of exposure to this so he is recommending a Hep. A&B shot as a precaution (this will happen next week).
Then we discussed the conversation around my symptoms not being necessarily related to or as a result of my lymphoma (as this was suggested by the oncologist).  GP sent me in for, you got it more blood work to test me for a thyroid issue.  This is good news because if my symptoms are a result of thyroid then they are treatable and suddenly watching and waiting just got bearable...
We also discussed the option of getting a different oncologist and ruled this out as the one I have is VERY highly respected by his peer group and even higher by patients, a second opinion is not required as the cancer agency makes recommendations by committee and given the potential impacts of the ruled out treatments they are not something I wish to risk.
So perhaps a thyroid issue, we watch and wait plus research.

next steps and appointments are...

blood work to determine if there is a thyroid issue
blood work for the two clinical trials I have agreed to participate in
blood work for oncologist review
bone marrow biopsy to determine if the lymphoma is in my marrow
follow-up with oncologist
follow-up with GP

Oncology visit

Well today I had my first appointment with the oncologist, after three months of waiting (only 6 weeks since diagnosis) today was finally here.  The folks at the cancer agency were all very fabulous!  Friendly and very respectful.  First came some very basic work, filling out forms, blood pressure temperature etc... then a medical intern came in as expected and checked me for swollen lymph nodes took some notes on my condition and went to get the oncologist.  He too gave me the once over and then started to let me know the options for treatment. There is a slight correction in my diagnosis what I have is as follows...
Follicular non-Hodgkin lymphoma (no change there) here is the different part, I have grade 1 which has to do with the maturity level of the cancer cells, grade 1 being early in development.  This was news to us; the next bit cleared up some questions I have been asking and have been asked by many of you.  I thought you said stage 1 and that meant only one lymph region was impacted but you said the CT scan showed multiple areas???  Yes both are correct, I have a couple of lymph areas impacted by the cancer one in my right groin and a second region in my centre abdomen.  So I have grade 1 stage 2 lymphoma with no strong symptoms and one more test coming next week that will confirm the phasing of the cancer, next week I get the pleasure of a bone marrow biopsy; yippee!!!
This test will let us know if my bone marrow also has been impacted, I am lead to expect a short uncomfortable procedure with about a minute of real strong discomfort; given my form of cancer there is a relatively strong chance that it will be there but either way it will not change the plan for treatment.

Speaking of treatment plan, here is how the discussion went (more or less) first option is chemo and at my current stage (2) and given my general health and fitness along with lifestyle the side effects are too severe for this to be a viable option at this time.  Second option is radiation treatment, this is what I was expecting to be told was our go protocol; unfortunately, because of the second cluster of nodes down the centre of my abdomen again the side effects would not justify the outcome since this would not cure the cancer only minimise it and the damage to my abdomen could be permanent radiation is also out for the time being.  So option three is my option. I call it the ticking bomb but officially it is called watch and wait... great I am tired of waiting and frustrated by the lack of any effective action.  Don't get me wrong I do understand the reasoning behind the direction but will need some time to digest it and get my head around it.
So the plan is a GP appointment tomorrow with a marrow biopsy next week and a follow-up oncologist appointment the following week.  To day the long-term plan is for regular quarterly follow-up appointments but not regular CT scans due to the radiation exposure so it will be regular blood work and monitoring how I feel (we all know how good I am with feelings).  It could flare-up in a few weeks, a few months or even 30 years or more before I "need" treatment; this is a normal practise and I am told and have read that the results of waiting are not any different than if it were treated in the early stages with the exception of only having to go through the physical illness once.
So for now I can dust off the bike pick-up the shovel and get back to my normalish life, sorry Jim no regular western afternoons here :-(
We will watch and wait and wait...

More to come as this soaks in.

Thanks for watching
:-)

6 days and counting

So here we are, less than a week to go before our first appointment with the oncologist.  This time next week I should have a pretty good idea of what the summer will hold for us.  In the meantime I continue to feel pretty good most of the time with only short lived brain fog moments and some minor bloating but nothing preventing me from doing things around the place or going to work so all is good there!
It will be a huge relief to know what is next and although it seems like forever ago since this little blip in our lives appeared, the time between then and now has provided me the time I needed to wrap my head around the likely treatment options (I think), as well as making arrangements at work to ensure that I still get some money every other week and that my work load is still getting looked at.  Knowing in better detail the near future will allow us to plan our lives a bit or at least stop us from saying no to doing things or committing to do things.  Our friends have been very understanding about short notice cancellations or early departures and still invite us to events but it will be a great feeling not to have that worry...
Soon we hope.
I do ramble on at times so for now, all continues to be wellish and almost normal.

Back to Work

The rest of the weekend went well, as we did our usual Sunday things.  It is very nice to do those usual things and perhaps we did get a bit more out of them than we have in the past.  Monday was a bit of a tough day as one of our cats kept me awake most of the night and I was tired and perhaps a tad grumpy, but we still managed to have a pretty good day of plant shopping and driving through the country side.  I snuck in a nap and enjoyed the hockey game. My neck is a bit sore and swollen near my jaw but I felt a 7 today and will sleep well tonight.  I am still eating well most days and have not been losing much weight at all so this is very good.

Movie Comment

Great idea to make a movie about this blog; title choices "To There and Back Again" a story of a band of friends as they fight there way through the trials, tribulations and battles to conquer Follicular non-Hodgkin Lymphoma.  or we could go on the lighter side of things and go with "Follicularly Challenged" a humour filled story about a man, and his friends fight to save his hair and and sanity during cancer treatment, will it become a story of loose ends???  In both versions I am told that Johnny Depp may be interested in the role but only if we can convince  Cate Blanchette.  This is still not a finalised thought but I think you can see where we are going here...
Thanks for the idea and let us know if any of you are interested in producing.

Stenello marathon goes international!

I wanted to take a quick moment to share with you the viewing numbers of the "Stenello Marathon"

So there you go we are now officially internationally viewed.

more yard work

yesterday (Saturday) after giving Lori a ride into work I had a coffee with Tom and Catherine.  We chatted about a few things and it was good to see them, as the last time was Wednesday at Tom's award dinner and I was not feeling good and certainly I did not look well; today I looked good well for me anyway ( I am still no Colin!! lol)
Came back home and started to do some more work in the yard with Ray; I think this is the 8th or 9th weekend that Ray has come by and spent at least one entire day working his butt off for us, the only thing he ever wants in return is friendship.  I am not supposed to say this but thanks Ray, the lunches and beer are just not enough but I think the working conditions are at least pretty good.  We spent the day screening the rocks and glass out of the soil and top dressed where we were going to seed the lawn.  This was a very satisfying day as we can now really see what the yard is going to look like (even better than it did before construction), Lori was very pleased to say the least when she came home from work.
Lori is out for her 90 minute run and she let me sleep in a bit today so that hopefully I don't need a nap as it is going to be another long day, heading out to Thetis for a swim with Amanda and then over to a friends place for dinner.
Still feeling pretty good and I would say yesterday was a 7/10 day for me.