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.