Monday, 26 March 2012
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.
Saturday, 3 March 2012
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.
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.
Tuesday, 21 February 2012
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...
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...
Monday, 6 February 2012
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
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
Saturday, 4 February 2012
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...
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...
Monday, 9 January 2012
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.
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.
Thursday, 29 September 2011
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.
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.
Tuesday, 30 August 2011
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!
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!
Friday, 12 August 2011
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.
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.
Tuesday, 12 July 2011
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
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
Wednesday, 29 June 2011
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!
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!
Tuesday, 28 June 2011
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"...
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.
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
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
Wednesday, 22 June 2011
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
:-)
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
:-)
Thursday, 16 June 2011
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.
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.
Tuesday, 14 June 2011
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.
Thanks for the idea and let us know if any of you are interested in producing.
Sunday, 12 June 2011
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.
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.
Friday, 10 June 2011
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.
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.
Thursday, 9 June 2011
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.
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.
Wednesday, 8 June 2011
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...
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...
Monday, 6 June 2011
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
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
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