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.

CT Scan complete

I am just back from getting my second CT Scan with the dreaded contrast.  Everything went according to plan; I now have a warm feeling throughout my body and a very odd taste of metal and iodine in the back of my throat.  The process to getting these is quite simple you head down to your local medical imaging centre and say that you have an appointment, they confirm details and ask you to wait a bit.  In a few moments a kind worker will not only offer you a drink but will insist you have two large glasses of flat sugary tasting water (with who knows what in them) and both labelled with a large letter "T"; once you have drank these you are encouraged to sit in a waiting area for an hour or so while "who knows what" makes it way through your system.  after the hour has gone by another kind worker   will come by and ask you to remove your clothes and put on these gowns... how flattering.  they then stick you with a drip line so that when the time is right they can inject some "contrast"into your bloodstream. It is that action that causes a wave of warmth and a feeling of nausea as the roof of your mouth begins to sweat that you have the warm fuzzies I am describing.  The entire process of imaging takes only a few minutes but the lovely feeling and taste lasts for hours.

It is not all that bad just not all that good and it is really a small price to pay for an updated view of what is going on inside of me, once I get a copy of the images I will post one so you can all see for yourselves.

Well that is all for today I am now going to have a nap...

keep the comments and good vibes coming.

The Fog has Lifted

I am happy to say that after two days of progressively thicker fog of the brain that today it gradually lifted and I am now pretty much as clear headed as I have ever been, which I know is not really saying much but I do feel better anyway.
Yesterday was the first bad day in a while and one of only a very few days where I had to leave work early because I was not feeling well.  After a long nap and a bit of food I was good for a while, we (Lori and I) went to government house to see our very good friend Tom receive the Lieutenant Governor's silver medal for excellence in public administration... WOW what an honour to be invited to such an event and I am very proud to call Tom my friend!  Dinner afterwards was a bit rough on me as I was quickly getting tired and even considered making a quiet escape a couple of times through the dinner but managed to hold in and by the time dessert came I was feeling better, even thought the mystery of the missing medal was not solved it was a very pleasant night and I am glad to have stayed.

Today was much better and tomorrow I can have a nap during the CT scan...

I'll let you know how that goes and what the results are as soon as I can.

Up Days and Down Days

Well I just finished letting you all know how good I have been feeling the last couple of weeks; now I need to add that the last two days I have been a bit off...
My brain seems to be about a foot outside my head, I seem to be light headed most of the day and on occasion I can't seem to find the correct ummm, ahhh come on what is it Ohh yah WORD when I am talking to people.  It is in the least frustrating and at most embarrassing as I attempt to sound intelligent and fail miserably.  The other issue I have been having since yesterday is really bad bloating and abdominal discomfort, to resolve this I am going to start a detailed food/beverage intake log to see if I can sort out a potential cause.
Still doing well aside from these minor complaints and yes I am still at work and still smiling...

Appointment Update

A coule of weeks ago I mentioned that the BC cancer Agency called to let me know about my appointment with the oncologist on June 22.  They also told me at that time that they wanted me to have some more blood work done as well as a second CT scan with the dreaded contrast, (leaves me with a metalic taste for hours).  Well we had the blood work done right away and as I have already reported they came back normal, good news.  I spoke with the oncologists' office this morning and my CT scan is for this Friday so bottoms up as I get to drink the special blended sugar water and then taste metal for a few hours.  A small price to pay for some updated images and a clearer picture of what is going on and how far the lymphoma has spread if it has at all.

a bit about how I am feeling

Over the past week or so I have been getting lots of questions around how I am feeling and what is my energy like.  I guess as much as it has taken me to have this news sink in it has taken all of you some time to wrap your heads around this as well... so here goes.
For the past couple of weeks I have noticed my energy coming back to a more normal level and am finding that I can do more before I get tired and need a rest.  Heck I haven't even had a nap in over a week now and I don't think I have been very grouchy (for me anyway), our good friend was over on Saturday helping in the yard and he asked me a great question, "on a 1-10 how are you energy wise? if 10 were before any symptoms." I told him I was at a nine this week and an 8 last week.  Kind of like rate the meeting... (work joke sorry).   On Sunday I bumped into another good friend while cheering the participants at the local tri, he had not heard about my lymphoma and was wondering why I was not in the event.  Well when I told him I thought he would fall down; I began letting him know how I was currently feeling and summed it up like this "if I didn't know, I wouldn't know" meaning that as far as how I am feeling now I don't feel sick at all.
 I am not sure if this is because the lymphoma is retreating?  Is it because I am finally fully recovered from the biopsy surgery?  Have I just had enough time to have the thought of having cancer sink in and now I am truly fighting it?  it could be because the weather has finally broken in to something resembling nice or perhaps it is all of the support from friends, family and co-workers?  Truth is I don't really care why, I am just happy to report that I am feeling almost normal!
No but really how am I feeling?  That is a standard question and how I read it is how are you dealing with this?  Well again I am really pretty good about the whole thing as is Lori, we have had plenty of time to think about it and to talk about it and bottom line is it is what it is.  There is nothing I / we could have done to prevent this and nothing I did to cause it so it is here and we (all of us) need to deal with it and show it whose the boss. 
I tell folks all the time that I have a lot of things on my side and it is these reminders that keep me strong;
I am young! average age of diagnosis is 62
I am fit!
I am healthy!
I live in Victoria, best treatment centre around!
I have a great doctor, very knowledgeable and very involved.
I have a great wife!!! Very caring and supportive.
I have great friends!  also very caring and supportive.
I have fantastic co-workers and work at a great place.
I have stage 1 with no b symptoms!
I think I am well positioned to beat this thing.

OH, almost forgot I do still have a sense of humour and that is a big chunk of it too.

So how am I feeling?
If I didn't know I wouldn't know, except for all of the support and love coming from you!

Thank you

A Busy Day

We had a fairly busy day today, first went to Beaver lake for a run. I ran with a friend of ours for 6KM then walked 2KM, it was really nice to be out at the lakes!  This was my first time out there in a couple of years and although it still has lots of dogs and roots it is just such a fantastic place to run the lakes are beautiful.  Thanks for the company M.
Home for a quick clean-up, then we had four very good friends come over and do volunteer work for just about 6  hours in our yard.  We got lots done and the place is starting to turn the corner.  Thank you so much guys and I hope you like the chili, you can come by any time.
So like I said a busy day today now to rest...

Blood test results

I am happy to say that the doctors office called to let me know that the results from my blood tests on Wednesday came in and all markers were in the normal range, this is a relief. 

Call from BC Cancer Agency

Yesterday (Wednesday 26th) was a busy day, first an appointment with our GP just to catch each other up and get a few answers around nutrition.  This went very well we got some advice on eating well and what to avoid.  Lean proteins and green leafy veggies are good, refined sugars and fatty are bad.  I knew this already but hearing again and how diet could impact the growth of mutated cells really hit home.
On our walk to the docs we received a call from the BCCA , we have an appointment with our specialist Dr. Hart.  The appointment is for June 22nd, but between now and then I will have a few more tests done, these include blood tests and a second CT scan.  The blood tests happened today and CT scan is yet to be scheduled.  The appointment is a preliminary one filling out paper work discussing with Dr Hart what and how I have been feeling, going over the test results both first and second sets and then possibly talking about treatment options.  I am very thank full to be seeing Dr Hart as everything I have heard and read about him is very positive!
So that is the appointment and medical news, but how have I been feeling?
The past week has been good! I have figured out that if I get enough rest and don't over do it I have fewer symptoms.  No nausea other than the one day last week and the aches are a bit less as well, stairs still leave me a little winded but I am back to  running a couple times a week.  OK it is only 5 KM but still, I will be cleaning off my road bike this week and replacing my running with a few easy bike rides a week Just like I said I would John!  It has really nice being able to get back to doing some exercise since the surgery and this has helped my head space.  Lori and I have been tackling the backyard over the weekend and with some help from Amanda and Johnathon it is really coming along, another few days and it will be well on its way to looking good again.
Well that is all for now so thanks again for reading this stuff and of course thanks to all for their hugs, notes and calls!

What's this? Good news!

Now I am all caught up on the blog!  Today, I was not feeling great.  The last couple of days my abdomen has been "tight" and I have not been all that hungry, well today was a new thing I started feeling nauseous in the late morning and by mid-afternoon left work to go to bed (this is not the good news part).
After having a couple of hours of deep sleep, I picked Lori up from work and went to get groceries, while we were heading back to the car our GP called to give us the results from the biopsy, it is a stage1 follicular NHL!  Great news, I was sure it was a stage 2.  Stage1 is as good as it gets other than hearing that you don't have it at all of course.
He also sent me some great up to date information on Follicular NHL and after reading that we are in much higher spirits.

Thank  you Dr Shafonsky!

The support from our friends keeps coming in and we want and need it so please keep it up>
You are now current and we will continue to post updates here but your calls, emails and visits are always welcome.

Cheers

Finally the secret can be shared

One of the hardest things so far has been not wanting to tell anyone until I knew what to tell them.  I know I have been acting differently around people and that they all have been asking why I am limping, why aren't you running? why are you away from the office so much these days?
Finally I can explain, there is no easy way so I have just been blurting it out.  At work I have found that for a few folks one-on-one is good but for others the group meeting has worked.  Bottom line there is no good way to share bad news; but, people really appreciate hearing it first hand and not through the rumour mill.
Lori and I both feel so much better both about knowing exactly what it is and then being able to share.  All of our co-workers and friends have been very supportive and we love you all for that!

Thanks

Follow-up appointment with surgeon

A short and direct appointment, we are there a bit early and Dr Hyashi sees us as soon as he is in, we are his first appointment of the day.  I have the results of the biopsy and the node removed was abnormal, Non-Hodgkin Lymphoma, Follicular.  Next step is a referral to the specialist which he will do and I should hear back from them in a few days.  We ask a few questions but really we are too overwhelmed to think.  This is exactly what I expected to hear but hearing it is far different.

Recovery

The next couple of days I am obviously tender and not walking all that smoothly, running is out of the question!  I take a couple of days to recover at home, working, sleeping and watching a couple of movies.  Surgery was on Monday the 9th and by Wednesday I am back in the office, taking the elevator rather than the stairs but at the office just the same.  Now we wait for the results, up to two weeks?  More waiting = more stress.
the rest of the week goes by quickly and I am distracted by the discomfort of the surgery to notice any other discomfort.
The weekend arrives and it is time to support Lori as she and a few of our good friends are running the local half marathon; then we are hosting a potluck brunch at our house because we are minutes from the finish line and because we said we would months ago.  Brave faces on! Lori has a great run meeting her goal time and this on a rotten rainy day that even the local ducks are not out in.
I have a bit of a visit with Kate just after the start so that I can get through the afternoon, then out on the course to give Lori her fresh water bottle just past the half-way marker, back home to make some spanokopitas for our contribution and before you know it people are at the door.
We spend a few hours entertaining our guests then off to the airport to pick up a couple of friends from the airport after their little vacation, well they say "any news?" no news but I do have an early appointment with the surgeon on Tuesday morning.  Off to their place to hear vacation stories have some wine and eat pizza.  A fun filled day but I need to go to bed so we walk home and off to bed.

Surgery Day is here, YIPPY?

Finally the day has come!  I get to have the biopsy surgery and move on to the next step, not that I am in a hurry but the waiting is very stressful.
Our friend who you have already met Tom picks Lori and I up to take us out to the hospital for 8:30 AM, we are told to expect the surgery to take an hour or so as I am just going to have a local and not a general anesthetic.  We arrive a bit early sign in and are greeted by a nurse who goes over the procedure with us and shortly there after comes to prep me.
She explains how to put on the "gown" (opening in the back please) and how to place the "modesty towel", she then returns after providing me with some privacy shifts the curtains a bit and Dr Hyashi is getting ready to begin.  A quick and simple procedure actually a 9cm long incision 25 minutes to "free" one of the swollen nodes, he asks if I would like to see it (I do).  It is about the size of my thumb so I would say 8cm long and 2.5cm across, i am amazed that it is that large.  He stitches me up and sends me on my way, just under 40 minutes.  Tom has barley had a chance to start his work before we are ready to go.  I want to get home right away so that I can take a Tylenol and be in bed asleep before the local wears off.
success I am asleep and as they say resting "comfortably".

Friends

I just wanted to include a quick entry to mention that we have not been solely consumed by this or our running.  I have mentioned that we have shared this with a few friends and the response has been great!  Thank you all.  From the surprise deliveries of home cooked foods being left on our doorstep to the bottle of scotch, the dinners at our place or yours where we did not even mention the obvious topic our friends Frank & Caroline who came over from Vancouver to share a very fun filled weekend to distract us from the upcoming surgery and help diminish our scotch supply, and especially to our friend Ray for giving us two full weekends of his time and energy rototilling our backyard ( which is just recovering from our house renovation and construction) and then laying down our new brick walkways.  All this while saying, as all of you have, "anything you guy's need just ask".  with friends like you Lymphoma doesn't stand a chance.

Thanks to all of you!

only a few days before the biopsy

By now we have told a small hand full of close friends and have asked them to keep it quiet as it is not 100% Lymphoma.
Tom and Catherine very kindly have invited me to join them in a small trip to Vancouver to the BC Cancer Agency Lymphoid Cancer Education Forum.  Thanks T&C this was a great day for me and I learned lots!
There were some challenges though first one was they were giving everybody coloured dots to put on their name tags, these dots were based on the type of cancer you had.  I don't know what I have yet I am waiting to hear, so I explain what my symptoms are to one of the doctors and they say here take a red dot it is as likely as the others, Tom & Catherine get yellow for Myeloma.  We settle in for a coffee and some snacks prior to the forum beginning and can't help but notice there are a few unusual people here, and the most unusual seem to have RED dots.  Tom jokes that they have definitely given me the correct colour dot.
We begin the learning portion of the day "the Lymphoid cancer basics" this was a fantastic overview for me and a real eye-opener, this doesn't have to be an ending to my story just a crappy summer perhaps.  Next speaker is about "the new developments in treatment" this was interesting but a bit over my head with science. I got we have made great leaps in the treatment of these cancers and continue to make more all the time or there is hope!
The final speaker of the morning was a very energetic doctor who is a Lymphoma survivor himself and he went over the "why me and why now" portion of the day, very uplifting and made the day for me.
Next was a break followed by our colour coded breakout sessions.  My colour as it turns out was the correct colour, not for the unusual person part as Tom suggested but for the fact that it was for the indolent non-Hodgkin Lymphoma group.  It was a good session for me as I looked around the room and saw how many healthy people have survived this and how they all talked about how much quality they have in their lives; although they have not been "cured" they all talk about it like it is in their past and that it is not much different than any other chronic illness such as Diabetes or Chronic Asthma.  You live, you monitor and when needed you medicate.

Lunch time

OK so we have a break which is good as I have taken in a bunch of information and I need time for it to soak in.  I am looking for T & C and trying to avoid some of the "red" people, while I'm in the buffet line.  Food is actually pretty good very good flavour actually not what I had expected at all.  I find Catherine and Tom at one of the "yellow" tables and they have saved me a spot, thank goodness.  We are sitting there enjoying our lunch and chatting about various things but mostly experiences with cancer, when the lady next to me notices that I have a red dot... I was thinking "is she going to ask me to sit with my own kind"? or what as she was quite taken aback by this.  Then it was clear, she had assumed I was with Tom & Catherine and in a supporting role not here because I had cancer.  She yelped, what? You are too young to have this how old are you? 28? THANK YOU I said no I am a bit older than that, but thanks.  Well that made my day we can go home now!

The afternoon session was less formal but very good, it was a feature from a cancer survivor/former doctor/author and was very light hearted informative and fun.  The big lesson here for me was you must write one thing down each day that made you laugh or smile; because, you will need to remember them some days when you don't think there is anything to smile about.  That bit is in my pocket and everyday I make note of one smile>

So how have I been feeling?

From early April until surgery (May 9th) I have been generally feeling well.  A bit grumpy at times, a bit of a back ache, a frequent mild head ache, restless night's sleep most nights, a pretty good appetite although my stomach and abdomen are tight and grumbles a lot.  the worst thing for me is occasional shortness of breath and the fatigue, I almost always feel like a nap would be in order and I can't always have a nap.
I have been keeping an eye on my weight and it has not moved more than a pound or two.  I have been running a couple of times a week and as the doctor suggested these have been slower and not more than 5KM.  Except for running the Sooke 10K with Lori (and doctor's permission).  That was a great race, I ran the entire 10K with her.  She got a personal best and I had a blast, well done Lori you ROCK.

some questions for the doctor

So now we have the initial diagnosis, a date for the biopsy and a month to wait.  I still have lots of questions and another appointment with our GP.  So we ask about nutrition, supplements pain killers, sleep, running and should we find another surgeon?? Answers are eat well, continue with the B and multi you have been taking, Tylenol is best in this case as it won't impact my kidney, sleep as much as I can and when needed take an Ativan, running is OK but not too much 3-5K and slower than usual.  As for the surgeon we have one of the best in town and it is better to wait and since we are not waiting for the surgeon it would not make a difference.
We also ask about some symptoms I have had the last few days; gaseous, tired, yawning,cramping.  All of these are fairly normal and to be expected. 
So we are to keep doing what we have been doing be mindful of what I eat, not challenge my immune system and get my rest.
Lori sure has a long summer ahead of her and we have a new spelling for irritable "Don", ha ha very funny but oh so true.

The call

Monday morning I am off to work, I get a call on my cell phone and don't recognise the number.  It is doctor Shafonsky calling to let me know he has the results from the imaging and the report is that I do indeed have indicators of Lymphoma.  The next step is to meet with a surgeon and arrange for a biopsy of a node to identify which form of Lymphoma it is.
I am shocked to say the least!  So glad I told Lori and a couple of friends over the weekend because now it is real and I already have a few people to fall on.  I tell my boss and the CIO at the office, both are incredibly supportive and made a huge difference on how my day went.  I go home for the rest of the day to let Lori  know and to wait for the phone to ring, "Don, we have you booked with Dr Hyashi this afternoon, bring a book as you might be waiting a while because he is going to fit you in between appointments."  I have no idea what to expect from this appointment, turns out to be a pre-op exam and that we will need to wait a few weeks to have the surgery, which is scheduled for May 9th.  almost 4 weeks away.

A long weekend, likely the first of many

Saturday AM Lori is getting ready for work and I am trying to sort out how to let her know, when to let her know and before I can say anything to her she is at work and I am having coffee with Tom and Catherine???
What just happened? I dropped Lori off drove for coffee and still did not let her know what the tests were all about?
During coffee a friend (Kate) who is also a psychiatrist calls me, she is replying to a rather vague email I sent her Last night asking her to call me as I wanted to talk to her about something. She has no idea what her morning has just turned into...
I wrap up coffee with Tom and Catherine then drive over to Kates' I get half way there and start crying. OK get it together, perhaps drop the car off at home and walk over to clear my head. A good idea not to drive when you are this upset anyway!
Kate answers the door and welcomes me in, "hey, how are you? What's up? Do you want a coffee? or something like that.  I sit down and let her know I am about to ruin her day, she says OK that's what I am here for.  After a few minutes of tears and fumbling with words I finally spit it out. "I have cancer"
Wow, that is the first time I have actually said it out loud.  Kate asks me a few questions around symptoms and such, I really can't remember all that well because my head was spinning. 
We talk about how Lori is doing with this news and I tell her she does not know yet.  "so you are missing your best friend?" and "she is missing hers'".  Kate, Thank you for this!  It really put things into perspective for me, of course Lori already knows something major is going on she does not know which thing it is.  Her mind must be playing some pretty good head games right now.  The conversation with Kate took a couple of hours and left me feeling really positive and focused on what I needed to do.
That afternoon I had arranged for Tom to drop by the house as I wanted to talk to him, practise makes perfect.  Tom is one of the most possitive and strong people one could ever hope to meet.  He is just finishing up his own encounter with cancer (Multiple Myeloma) and was an inspirationto many through-out that.  I managed to tell Tom wiht only a few tears, he was great and the conversation ended with "well, you are in for a hell of a summer man, don't forget to ask for scotch.  and don't take any of those blended ones either".  When Tom was undergoing treatments he told everyone that when they visited they need to bring him some pity and since he could not deal with the traditional type that a bottle of single malt scotch could be a symbol of their pity for his predicament, he now has a pretty good collection of scotch!
So I have now told two close friends about this but still not the one person who should know, she is at work and we are supposed to go to a birthday party tonight.  I pick Lori up from work and get home, she can tell something is up and I just say it. "Dr Shafonsky thinks that I might have Lymphoma", we have a good talk about it and I tell her about my day and why the doctor thinks it is Lymphoma. 
We have a bit of a cry, put our heads straight again and call our friends to let them know we are not able to make the party, sorry Rory hated to miss your birthday!
The rest of the weekend is a bit of a blur with friends coming by, not knowing why we weren't really there.  We both did our long Sunday run, very therapeutic.  I think we watched a couple of chick flicks and waited to hear from the doctor with the imaging results.

The beginning

Two weeks later, I return to Dr Shafonsky's office to discuss with him the results of the blood tests (pretty normal) and the hard glands which he correctly lets me know they are lymph nodes not glands. Next step he says is imaging (CT scan and x-ray) he also lets me know that he is concerned that this may be Lymphoma and that he is trying to rule that possibility out.
Lymphoma? Isn't that cancer?
Off to the internet for answers...yes it is cancer, breath you don't know... stop reading the web page breath. He wasn't sure, just concerned that it might be, BREATH.
Thursday AM and I am having a bit of a cry in the shower thinking that I may have cancer (I have not mentioned it to Lori yet because I still don't think it can be happening), the phone rings and Lori tells me it is the local health authority. I take the call half in the shower and trembling, must be serious as the doctor only asked for the tests yesterday, tomorrow AM? OK. I'll be there. Lori and I both have a frightened look on our faces, "that was fast" we both say. We get ready for work and don't really say much more about it. Friday comes and I go for the imaging. CT scan with contrast and a chest x-ray, this is really happening! And to me! I go back to work that afternoon and it hits me, I might have cancer! It is all I can think about that day and night, not a great sleep as I lay there wondering how I am going to let Lori know.

Where to begin???

Wow, so much to say and where do we begin?  Well I guess I should let you know a bit about me, I am 42 years old and have been quite physically fit for the past 11 years or so having completed 15 marathons and 2 Ironman distance triathlons I would say I was in the best shape I have ever been in.  I am Married to a very amazing woman named Lori who is also an avid runner and a marathoner not to mention being an inspiration. 
For the past couple of years we have had a running coach and have been focusing on our speed; both of us have seen some pretty good improvements in all our race distances and this year was to be the peak for me during the "Island Race Series".  I should take a moment to mention that we live in Victoria BC Canada and our road racing season start up in January and ends for the most part in October; not bad for Canada eh?  Any way we were all set for a great year of racing and after the first race in the series and both of us doing personal bests at the 8KM we were on track.  Then race 2 a 10KM and Lori again does really well although I am off a bit from my expected finish time, race three a 12KM and similar results Lori does very well and even finishes with an above elite age group time for the distance!  I fall a bit short of expectation again and am not feeling well so off to the doctor.  We discover that I have an infection and so I start what will be a 6 week course of anti-biotics, during which time I continue to struggle during my races but brush it off as a result of the anti-biotics.  Six weeks go by and I am ready to race the Comox half marathon targeting 1:29:anything, it is March 20th and I run a pretty good race but at KM 8 I am done and walk up the hill as my running friends run past with questions in their eyes.  after a bit I feel better and start running again and do finish the race in a time of 1:31:23 pretty close but again a bit disappointing.
That night I notice that my glands on my right groin are swollen and I think it a bit odd as I have just finished 6 weeks of anti-biotics and no bug should have survived!  I shrug it off and go to sleep; Monday morning I wake up and they are still there so I call the doctor.  Wednesday that week I am in with Dr. Shafonsky explaining why I am there and after taking a look and checking for cuts or infections, he sends me off for blood work and a follow-up appointment in two weeks time.
In the following two weeks there is little change in my glands other than they have turned hard and a little sore, other than a feeling of being tired every so often I feel pretty good and keep up my normal day-to-day life including my running.