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
