day +31 - one month post transplant

Note:
wow a month has gone by since my transplant it feels like just yesterday I was in an immobilized state in the hospital with all kinds of of bags of medications and blood products flowing into the 2 tubes hanging from my chest. a lot has gone on since my last post day +14 when I was discharged from the stem cell unit. I started eating again after loosing a total of 35 pound in 3 weeks. I started to walk again still baby steps as the fatigue is always there and for every 5 steps forward there are 4 back. Im sleeping less but still need a daily nap to get through the day and skipping a meal is out of the question as its my fuel to get me by. I have seen my hematologist a number of times and the reports that have come back have all been positive my blood counts are slowly climbing and returning to normal, they are not perfect yet but they are slowly improving. I have started to see various side effects from the high dose chemo or the transplant we are not sure which one is causing it but for example as you can see in the photo the skin on my hands is coming off, as if I were molting or loosing my skin like a snake or a butterfly. My hickman line came out but of course not with out some amount of drama, after I got home from the surgical proceedure I started to bleed and had to turn around and go back to the hospital to get the bleeding stopped and have a better pressure dressing put on. I have what I think will be the last weekly visit to my heamtologist for a little while this friday
if all is well I wont see him until september when I will have my 3 month ct scan post transplant. This scan will tell us more if the transplant worked or not and at that point depending on the results we will have to make some choices depending if further treatment is needed or not. for now I have 3 months away from the hematology clinic to recover as much as I can (Im told it will take about 2 years until I feel like myself again) and to get my head back on strait after this ordeal.

day +14

Home

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day +13

sitting up, first looks in the mirror at myself post transplant, post fevers, rashes, pain, transfusions: weathered and battle worn, I even look a little unlike myself, not surprised but happy to be......

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day +12

My happy day, starting to feel better, rash subsiding, started to eat again, got out of bed for the first time in 5 days.

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day +11

Fever broke, unknown body rash, counts sky rocketed wbc @ 3.0 neutrapils @ 2.8 hb stable and plts stable

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day +10

High Fevers and Blood Transfusions

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days +8 & +9

Codine

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day +7

Counts drop again, transfusions, mounting anal pain, low grade fevers and neupagin shots are the many flavors today

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day +6

Counts 0.1 up from 0.0 needs to be 1.5 before I'm in the clear. Anal mucasitis has kicked in my butt is on fire.

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Day +5

wbc/neutrafil counts are 0, platelets are 27, will need a blood transfusion over the weekend
all visitors need to wear a mask and not have been exposed to colds/flus over the last 10 days
dont visit if you even suspect your sick or to vain to wear a face mask, call me instead.

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day +4

Neutrapinia

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day +3

Counts starting to drop....

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day +2

Starting to feel the hd chemo side effects. Still sleeping deeply speckled with strange dreams and requests for fluid samples

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day +1

Day one was uneventful slept lots. I Shook the lead out with a masked walk around the SC unit. The sound of the iv pump has become annoying to me its just always there grinding away greating on my nerves.

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day zero

Transplant day, 10 mins and it was all over. feeling drained but optimistic for the future. Was heavily sedated had dreams of marshmellow rooms and a sense of floating in space

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day -1

Note: 2nd blood transfusion hd counts are still low gearing up for day 0 transplant.

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day -2 supplemental

Note:
1st blood transfusion hb went below 90 decided due to heart issues to transfuse hb to avoid angina attack and possible heart attack as a result. This is the first blood product ever and I'm thankful for whom ever donated.

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Note:
chemo cloud ascends

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day -3

Note:
High Dose Malhaplan 1hr. recommended to chew ice for 1 hour to avoid gi tract sores

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day -4 high dose chemo

Note:
VP-16 first infusion

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day -4

note:
5am hydration

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from the sct unit



note:
I checked in to the hematology unit at 1pm (yes, there is free wireless here on site)
they did all the necessary check in routine for me swabs, bloods, weigh in and what have you, I met with my sct in patient team they gave me the info I needed to know in terms of what is happening when
day -4
4am hydration starts
high dose VP-16 for 8 hours
day -3
high dose Malphalan 30 mins
day -1 and -2
sit around twiddle my thumbs wait for the chemo to leave my body
day 0 (my re-birthday june 7th)
stem cell transplant - Im lucky only one bag so its over with in 15 mins
day 1-6
hang out get really sick take lots of really good drugs
day 7
neupagen shots to help raise my white counts
day 8-12
hang out still sick but getting better
day 13 or 14
prepare to head home to recover from this treatment (eta is about 2 years)
so thats it for now let the ass kicking commence!!!!!!

got the call....



note:
Its official Im off for the next 3 weeks, Im being admitted for my transplant to PMH tomorrow afternoon... I have set things up to hopefully be able to post from my cell phone so keep an eye out for updates here... in the mean time with much healing light and warrior strength...

waiting to get to the top of the unknown



note:
after a bit of a scare that I didnt want to post about a new lump I had found in an area close to my auxiliary lymph nodes (ie: my arm pit) turned out to be nothing to worry about, I am back on track with my original treatment plan, which as you all have been reading about will be an autologous stem cell transplant performed over a 3 week hospital stay in the stem cell unit at princess margaret hospital here in Toronto, Canada. Myself and my hematology team were concerned that I would not be able to get this transplant because it was thought that I might be refractory after all this chemo I have gotten and there for now resistant to it. But now that we know this new lump was nothing more then a blocked hair follicle due to all the hair loss I am experiencing we dont have to worry about this. So in the words of my hematologist: go home and get your bag packed as Im getting on the phone and going to start nagging the stem cell unit to get you in there asap. So it should be not much longer now hopefully next week and I will have a bed in the stem cell unit for them to perform the high dose chemo treatments and re-birthday me when they put my stem cells back into me. In the mean time its like waiting to get to the top of some thing that Im not quite sure what it is.

Let the games begin, no more watching from the side lines


note:
all my pre stem cell transplant treatments, procedures and tests are officially done, now I wait for a bed in the stem cell unit. I have been mentally preparing for this day to come now since February when I was told that I relapsed and that the recommended treatment for me would be an autologous stem cell transplant. So today I cracked my knuckles and said to myself out loud "let the ass kicking commence, Im ready for my stem cell transplant!!!" No more watching from the side lines, no more reading about it and researching Im in there the sooner the better. Lets once and for all kick this disease, get rid of it and move forward. I mean cancer no longer deserves the respect even of having of a name any more, I now call cancer: "it", cancer is too dumb to own a name to it self and since its a temporary state why bother. So as fast as the games began, they will be over and with one final fatal swoop of the chemo sword, my bodies extra strong healing powers (thanks for my stem cells) this warrior along with all the powerful good thoughts of health and healing from my family and friends we will kick "it" from me for ever. I now stand prepared knuckles cracked in my strongest of strong warrior stances ready to beat "it" once and for all. I am on the wait list for a bed at PMH as of May 20th so any day now. below is the most recent photo of me I might be slightly battle scared minus some hair, from the last 3 months but I still stand ready and strong.

Im stem cell harvest superstar


note:
after 7 days of extremely high dose shots of neupogen that I thought in the end would kill me Im happy to call myself a "stem cell harvest superstar". But I do say this with some caution as I had been very sick over the last week spending time in the ER with very high temperature hanging around 38.8 and bone pain that had me screaming like I was in labor and making my rib cage and hips feel like they were going to explode along with a blood pressure that dropped to 94 over 77 with heart palpitations and a splitting headaches. it had me worried and scared that some thing was going wrong but all it was in the end was that my body responded so well to the neupogen and had produced millions of stem cells and they were all in my blood making my body respond (at least that is how it was explained to me on Monday when I went in for my stem cell harvest). when I went for the blood test to see if I had stem cells in my blood to harvest it showed up in the 3 digits. once they got back the test they instantly hooked me up to a blood separator and with in 1.5 hrs they collected over 5 million of my stem cells for my transplant. Im calling my self the "stem cell superstar" but this process at minimum usually takes 2 hrs to harvest the minimum amount for my body size which is 3 million stem cells and can take as long as 4 days of 4 hrs of harvesting to get to the levels they got to with me. So who would have known that I have such strong healthy bone marrow, but I do apparently. so now Im waiting for the next and final leg in my stem cell transplant journey: the actual transplant, Im on call for a bed as of May 20th it could take as long as a month to get one or as little as a few days wait. Once I get one Ill go in and 24 hrs later they will start me on 3 days of high dose chemo and on day 4 return my stem cells back to my body and then we sit and wait and hope for the best. In the mean time later this week I have a few more tests to endure before I can be admitted for my transplant a muga scan, a pulmonary function test and a dental exam (to avoid any infections during the transplant process). I will try to post more before I head in for my transplant and hopefully I will figure out a way to post updates from the hospital once Im admitted, they might be less technical as it might be coming from my phone but you will get the idea.

good news, some thing I haven't had in along time


note:
I had been immersed in chemo for 3 days strait at the end of this last week which is a good thing it means that my scans came back and I responded well to the salvage chemo. the masses went from 4 cm to 1 cm and that was with out the radiologist report and just with my hematologist/oncologist eye balling it so he said I am either nearly in complete remission or very close to it going into my transplant, which is good in terms of prognosis (I don't like that word, but Ill save that for another post another time). The closer you are to remission heading into the stem cell transplant the better it is supposedly, but as I was told when I began my salvage chemo in March, even a 50% response to the salvage chemo is a good sign of success. Regardless this is good news, some thing I haven't had in along time. I feel as if I had the stuffing kicked out of me, 3 days of chemo in a row, who would feel good after this?
I start the G-CSF (Neupogen) shots on Monday and my stem cell harvest begins on May 11th, if all goes well we can collect 8 million stem cells in one or two sittings but if not I'm booked for a week on the machines to collect. The doctors are estimating that any time after May 19th I could head in for my transplant, as soon as there is a bed available for me in the stem cell unit at the hospital. Once I'm in the hospital the real action starts, 3 days of high dose chemo and on day 4 I get my healthy stem cells back and hopefully Ill be on my way to a cure (it will take 10 years before they will say if I'm cured or not, more about that in future posts). This will be my new birthday day or day zero the date I get my stem cells back, its an interesting process as technically my entire cellular structure in my body will be changed and renewed in one 4 day period. At least that is how I understand it.

Thanks for Tomorrow: benefit compilation to help raise money for individuals and charities in need



note:
Thanks for Tomorrow is a collaborative digital release led by Canadian
netlabel Pertin-Nce to help raise money for individuals and charities in need.

When you download this compilation, please consider a donation of $5
to $20. Half of the proceeds will be donated to Canadian producer Neil
Wiernik to help offset the costs associated with extensive medical
treatments for a rare form of relapsed Hodgkin’s Lymphoma.

Neil’s progress can be tracked at: www.neilsnodes.blogspot.com

The other half of proceeds will be split equally among charities we like:

Wellspring
(http://www.wellspring.ca)
Wellspring helps people restore the dignity and control they so often
lose when diagnosed with cancer.
----

Dans La Rue
(www.danslarue.org)
Dans La Rue runs programs in Montreal that give street kids the tools
they need to build a better future for themselves.
----

Family Service Regina
(http://www.familyserviceregina.com)
Family Service Regina is a vital, not-for-profit organization
dedicated to helping families, individuals, and young people facing
new or difficult challenges in their lives.
----

Habitat for Humanity (World-Wide)
(http://www.habitat.org)
Habitat for Humanity is needed to help
eliminate poverty by providing simple, decent shelter to those in need.

Visit the site to down load the release and make a donation: http://www.pertin-nce.com

broken but not busted


note:
ok I will admit it Im having a hard week, well maybe its been a hard few months to be followed by a few more hard months. Im feeling really down almost depressed this past week, I think its medication related my serotonin up take is messed up from all the chemo and steroids. or it could be anxiety about my up coming scans (tomorrow) to see how I responded to the salvage chemo. But my guess is that the chemo drugs are leaving my system so for most of this past week, I have felt weepy and a bit less like myself then normal: agitated, anxious and weepy all at the same time mixed up with worry about my up coming scans all makes for a bad combination. Im worried as I have my post salvage chemo scans on april 28th and 2 days later I find out of I can move forward with mobilization chemo for my stem cell harvest. Im feeling worried and concerned about every little pain and lump and bump and feeling. I know this is silly of me I know that the GDP chemo did its job and that I responded and that I will move forward in this auto-sct process and that I should not let these pangs of anxiety and fear get to me. But they do, what makes it worse is that Im having a hard time with how some people are responding to the fact that I have relapsed and that Im fighting cancer again. people who are making empty promises to me by not following through on plans they make with me, when they know that I have so few moments that I feel well enough to do things that every free moment that is lost is a big deal to me or making it nearly impossible for me to meet them by suggesting that I trek across town on public transit to meet them, when they know I have to be careful about being in public places (especially with the flu and colds that are going around). Then there are the stupid things people say to me, I get "friends" telling me the severity of my illness, someone recently told me that what I have is not terminal(??!!!???) I mean what planet are people on, do they not realize that cancer is a terminal illness and that anyone with a cancer diagnosis is one step away from palliative care. Just because as someone living with cancer we dont talk about it, trust me its there doing revolutions in our minds all the time and lets not get onto the good cancers vs bad cancers debate as cancer is cancer its all BAD. I dont wish any kind of cancer on any one at all for just that reason. keep dreaming all you people not living with cancer, keep trying to tell me how Im doing and how sever my illness is or is'nt or keep pushing magic potions and remedies on me and telling me dumb things like I dont have a terminal disease. sure its treatable and sure auto-sct are still considered curative treatments for HL I know all this, I also know that the cure rate is only 50% for relapsed HL, I know that there are risks with this treatment and other cancer treatments. I know that the majority of the folks who have had a auto-sct are cured and that the relapse rate post auto-sct is a rare thing, but these are the same things I believed and thought 2 years ago when I was first treated with chemo. I know a lot more then people are giving me credit for, people forget that I have lived with cancer since march 2007. why treat me like Im stupid and tell me stupid things like cancer is not "terminal" or drink this magic potion it will "cure" you or that I should not do chemo as its bad for me that I should do yoga and drink green juices it will "cure" me. come on world get your socks on and figure it out its not like you need a phd to figure this stuff out its all pretty basic. cancer is bad its not a good thing, its not some thing that you can think or wish away (even though I often wish it was), and in some cases people die from it. Im not saying Im going to die, I know what I have is treatable, but it happens some times so dont tell me it does not fall into the terminal illness category and stop with the links to magic non medical remedies and please dont tell me that chemo does not work as that makes me feel badly for how hard I have worked to get well again. it invalidates my choices of treatment for the disease I have been fighting for 2 years and 2 months now. dont you think that I have done my own research and in doing so that I can show many more people who are cured from chemo then your magic potions. if that is your choice to take that route Im happy for you but please dont push it on me as its not my choice. Im not saying that this stuff does not work but I have chosen the chemo route as it is the one that I think will work best for me, so please dont insult me or make me feel badly for choosing the path that I think will work best for me. I still meditate and visualize and believe that reiki is a powerful form of energy work but its my complimentary treatment for my soul, and its not with out the use of chemo which for me it is what I chosen to use to fight the cancer that I have. I respect your choices please respect mine and please most of all let me tell you the severity of my illness, or how Im feeling. I mean it is some thing Im going through, it is my journey and Im the one who sees the doctors, gets the tests, who is poked and prodded, biopsied, x rayed, scanned, has had 10000000000s of needles, gallons of drugs poured into my body and an equal amount of blood taken out and I am being told what is happening, Im the one who takes these tests and gets the results, not you. dont get me wrong this is not everyone, in fact compared to all the amazing wonderful support I am getting from my family and friends, these people that do these things are a small minority. but this small minority of people stand out in my mind as its these peoples words that cause me the greatest amount of grief and stress with their messages of so called "support". you want to support me ask me how Im doing or if I need any thing or how you can help me (dont get me wrong there are lots of family and friends who do this and know the etiquette of how not to cross that delicate line of when its best to say nothing then some thing for the sake of speaking). All Im saying here is dont tell me what I should be doing, what I need or how to do it, and then wounder why I react in an upset manner as that is not supportive and really just hurtful. Try to remember that behind all this medical stuff that Im still a person and even though Im a little bit broken at the moment, that Im not completely busted.

salvage chemo completed, now the scan



note:
I finally have come out of the chemo fog from my last round of salvage chemo. I wont lie it was rough, GDP the protocol I was getting for my salvage chemo treatments pummeled me hard but as hard as it is I know why we are doing this and Im keeping my eye on the prize in the end. This salvage treatment makes the chemo I had 2 years (ABVD) ago seem like it was apple juice compared. The chemo was hard as nails and still is as it lingers around in my body, I spent most of the last 41 days sleeping and figuring out when I had enough energy to to basic things like use the washroom or eat. fatigue is almost far to light a word to use for what I felt, in fact the fatigue I felt was so over whelming that I barely could even pay attention to all the other side effects I had to deal with during this chemo. like I said this was nothing compared to the ease my first chemo treatments were like 2 years ago and that was not easy so you can have an idea what this was like. Now Im sitting tight until the 27th when I get my scan and on the 29th we can decide if there is enough of a response to move forward to the next step in my transplant process which is the mobilization chemo, 3 days of chemo and 10 days of growth factor shots to stimulate my body to produce 1000s of healthy stem cells to harvest for my transplant at the end of May, early June. everyday I am one step closer to ending treatment, personally 2 years plus is far too long for this to be going on, so Im on a mission to get rid of this disease and move forward with my life. what ever that will be is to be talked about in future posts but for now Im focused on getting through this, then recovery then life. Since Im in the habit of every so often posting a photo of what Im looking like going through treatment, so you all know Im not too scary looking yet (well that is to be debated) this photo was taken just before I made the post.

lucky number 7??? and gdp cycle 2 started.


note:
my blood cultures came back negative for an infection so we moved forward with cycle 2 of my salvage chemo yesterday. today I feel like I have been hit by a truck, but its ok as I know its for a good reason. my bone marrow biopsy came back inconclusive so it has to be redone at some point sadly, but it is what it is, it will be my 3rd one so Im an old pro at it and just breath through the pain of it. they got a good sample of my bone marrow just not of the bone so they will need to do the bone coring again which is the more painful part as they cant numb the bone to core it out.
I have my scans booked on april 27th and a huge amount of blood work the next day as on the 29th I see my hematologist/oncologist and if it all looks good that the salvage chemo put me in a partial to full remission we can move forward with the 3 day mobilization chemo that afternoon on the april 29th, 30th and may 1st, the mobilization chemo along with 10 days of high doses of growth factor drugs to stimulate my body to produce high levels of stem cells/bone marrow (which are the building blocks of the cellular structure of blood). its these which they will harvest from me 2 weeks later when my bones are busting with bone marrow (sort of the same idea as to when we get growing pains as teenagers). For the harvest Ill be put on a kind of dialysis machine where they can filter out my healthy stem cells as they come out of me and pumped back the blood empty of stem cells into my body. Once they get 17000 to 18000 stem cells from me they can stop (usually takes about 1 to 4 days of sitting on the machine for 4 hrs at a time) and I go home and wait for a bed, in the stem cell unit in the hospital. My doctor told me that it will be around the end of may beginning of june that I will go in for the transplant. this will be a 3 week process where I get high dose chemo that will kill all my bone marrow including the cancerous marrow and then give me back my own stem cells that are free of cancer and wait for my white cells to come back up over 3 weeks and then send me home to finish up the recuperation process. They usually see me 4 weeks later to check my blood work and give me a scan to make sure all is good. There is only a 50% change that this will work, but they assured me that there has been a lot of success with this procedure, so its still considered curative for me. And even if not if I end up with no cure in the end they will treat me as needed which they refer to as a chronic disease or recurrent lymphoma. Im going for the non chronic out come personally, but if not at least I know that there are new and better treatments coming out all the time.

day 13 of 42 end of cycle 1: blood infection, hickman unwrapped and cancer treatment etiquette


note:
day 13 of 42 comes to a close with some ugly news for me. I got a call from one of the lead doctors in my hematology team this morning that the blood cultures they took from me last week when I was having unbearable pain and swelling at the insertion site of my hickman line into my chest has tested positive for a blood infection. This explains the drenching night sweats, the sore mouth to the point all I could eat was liquid foods for the last 10 days and the general state of non recovery I have been in since I started chemo 13 days ago. tomorrow I have to check myself into the hospital for more blood tests and a possible 4 or 5 day stay for IV anti-biotics before they will allow me to continue on to cycle 2 in this 42 day cycle of treatment, which needs to be completed before I can move onto the bone marrow transplant phase of my current treatment. I went to an orientation for the auto-BMT or auto-SCT as its more commonly called, all I can think the entire time is how the treatments I got in 2007 was easy compared to what is in store. Not only will they kill all my bone marrow with days of lethal doses of chemo and at the last possible moment before I expire give me back my stem cells to rebuild my entire blood cell system again but this treatment is only giving me a %50 chance, if not well we wont go there for now. but to be honest with you I saw a lawyer 2 weeks ago about my final will and testament to get that out of the way now just in case. I am already totally wiped out by the salvage chemo and this is only the beginning. I have started on the low microbial diet and am more or less in isolation most of the time at this point, as exposure to even the smallest of virus or cold could possibly kill me. So other then going to the hospital and home until my transplant I dont get out much. My blood counts are way down at this point already and will continue to drop, I find it funny how people dont realize how serious this treatment is and keep approaching me like its not a big deal to bring their children/pets around me or to have me go out for dinners publicly. That stuff was not really ok with my previous treatment of ABVD, which is 1/4 of the toxicity of what Im getting now. I mean just to give you an example beyond my lower then lower blood counts and my current state of infected blood just a few of the side effects that I am seeing with this first of 3 different chemo regimes called GDP has been: extreme fatigue all the time, I can't swallow, I'm nauseated all the time, my ears ring, my hands and feet are numb, I have sores and pimples all over my body, my neck and joints hurt can't really move much, I am either not going to the washroom or I'm going to much, basically I feel beyond crappy. But I know eventually this will all be over so that is getting me through it all. But I just want to say this to all the lovely people in my life, as much as I know your wanting to suggest things to help me, visit me, bring me food and flowers, take me out for food, meet me for tea, take me to the movies or have your kids/pets visit me comes from a good place in your heart these things can kill me right now. So if you want to help send me your best wishes and thoughts, email me (but no emails allowed about magic anti cancer drinks and magnetic vibration machines please, I have read about them all), call me, come for your visits only if your a human and adult and please only if you have not been sick in the last 8 weeks or have not been around small children and please, please, please make sure you wash your hands before even thinking of coming close to me and even then dont try to hug or kiss me. Oh and leave your perfumes at home also unless you want me to puke all over your lap. sorry if this note sounds angry or harsh but honestly if you want me to get through this next round of treatments alive and not dead, you and I all need to be vigilant about this stuff when it comes to me at the moment.

there are stages...

note:
I had an interesting thought today as the chemo fog lifts from me and I sort of start to feel better right before I head in for more this week. there are stages to this healing process. As someone living with cancer and going through treatment, we are fighting warriors. As we come out of treatment we are for a moment in time a cancer survivor and most of all in life we thrive and are resilient animals. These stages are in flux not always one or the other but the goal is to always thrive even if there are moments of having to be a warrior or surviving. (I still have my hickmen line covered in a surgical dressing, as soon as this comes off I will get you all a picture to see it in all its glory).

salvage chemo cycle one of two: day 1 of 42.

note:
8 hrs of chemo this past tuesday, we had to re-site my IV 3 times as my veins have not recovered from all the chemo I had through them in 2007. So my veins were unhappy, lucky I had a few very patient nurses who took the time to get the IV going into a good vein for me, so it all finally got all my chemo. chemo cloud descend as predicted the next day. familiar feeling just sooner and more intense then what I had with abvd, I can only imagine that this gdp salvage chemo and the rest that is pending will only get worse and more intensely bad feeling but I am ready mentally to get through it. The hickmen line went in today, not much to see yet it is all covered in steri gauze but once it all comes off you will all get to see my latest cycborg addition to my body to help me in my fight against cancer.

staging part 2: bone marrow biopsy

note:
well it came and went, I dont know if it is because I knew what to expect, Im at a different place in my life or the NP that did the procedure was extra gentle with me.
But all the anxiety I built up from it based on how much it hurt the first time was in vein as before I knew it, it was over and other then some minor "ouchs" it was painless for the most part. I got results from the gallium scan and I showed gallium negative. I asked if this meant that I had no cancer in me and well gallium uptake is never a sure thing. Based on how the masses have changed behind my abdomen it is a sure thing that these masses are HL again. So we continue to move along the path towards a stem cell transplant (SCT for short), Im scheduled for salvage chemo known as GDP for this tuesday the 17th and on the 19th i will have my hickmen line inserted.
This is a catheter that will be inserted into my chest to help with all the chemo, stem cell harvest and any other things I will need to have done over the source of the next 4 to 5 months of treatment.

this is not a gallium scan...


note:
Friday I walked into nuclear medicine for my gallium scan and rather then directing me towards the room that in the last 2 years of my life I have come to know where the gamma machine is they had me turn the corner. Friday I turned the corner into the future of technology some thing called a SPECT/CT, sort of like a PET/CT scan but newer, and we all know that in the world of medical technology that newer means better (or so we hope). I couldn't take any photos as this new hybrid gamma machine/ct scanner is fairly new at the hospital how ever the photo above gives you and idea of what it looks like sort of as if someone took a gamma machine and stuck a ct machine on the end of it. The scan took about 2 hrs but from what I can tell from my google image searchs and the u-tube videos I have watched about SPECT/CT a well worth amount of time for cutting edge technology. One of the reasons why the Canadian Government never jumped on to the PET/CT scan bandwagon for lymphomas was that there were a lot of false positives with that technology due to the lack of clarity in the scans provided.
With a SPECT/CT scan you are able to pin point where the cancer is acctually see the metastasis rather then guessing if it is cancer or scar tissue and see the amount in the locations that the cancer is in. Some thing that CTs or gallium or PET/CT scans has given doctors and technologists trouble diagnosing what is what for years. In other words more accuracy for cancer diagnosis, some thing that as a person living with cancer has only been able to wish for up until now. I was looking around on line for as much information about it as I can, I wanted to find a video for you to see what its like but all I can find was the IQ/SPECT the SPECT/CTs younger brother that is currently under development for cardiac care. One of the many uses for SPECT/CT out side of lymphoma is other auto immune diseases and cardiac disease diagnosis so maybe this IQ/SPECT video is the wave of this first wave of the future that I experienced this past friday. check out the video below if any thing the soundtrack is great. more later this week after I go in for my Bone Marrow Biopsy.

staging part 1: gallium scan

note:
2 days ago I went for my injection of gallium (a radioactive tracer), which as usual my veins barely cooperated but after a few pokes in it went and over the 3 days it has made its way through my body making all the cancer in my body glow inside of me so that when they take pictures of my insides tomorrow afternoon they can see just where the cancer has spread to in my body. The procedure is called a gallium scan, and usually takes about 45mins to 2 hours to do depending on how still I lay during the scan and how well the gallium uptake was over the last few days. I will try to take some pictures of what the scanner looks like but if you cant wait you can see the machine in this post which are the photos I had from the first time I got a gallium scan 2 years ago when my cancer journey first began. I also learned yesterday that March 11th I will have my bone marrow bioposy, you can view this procedure done on a close friend of mine in 2 parts: part 1 and part 2 (thank you Andrea for sharing this). After this I get a few days rest and I begin the first of 3 different chemo protocols this one being GDP, which will be 4 treatments over 6 weeks (2, 3 week cycles). so it looks like I am starting chemo sooner then anticipated but in my books sooner is better.

"relapse" the words I always hoped NEVER to hear


note:
Yesterday my hematology/oncology team confirmed that I have relapsed, I had secretly suspected this for a long time but never verbalized it, I still have a gallium scan and a bone marrow biopsy to go through to stage me. Im already at stage 3 as the masses they found are behind my abdomen, close to my kidneys and spine. So the bone marrow biopsy will tell us if it has spread to stage 4 yet or not. The treatment is complex but it ultimately will lead me to a 3 to 4 week stay in the hospital getting high dose chemo and a stem cell transplant. But its not for a few more months I still have to go through 8 weeks of out patient chemo and a few procedures first. I dont know when chemo will begin yet I have a long haul of tests and procedures before it begins: gallium scan, bone marrow biopsy, angioplasty (not cancer related but needs to be done before chemo starts), hickmen/central vinous line put in, first round of chemo (2, 3 week cycles), second round of chemo (1, 3 day cycle), one week of nupagin/growth factor shots, stem cell harvest, 3rd and final round of chemo: high dose chemo, wait for cell counts to drop to zero, stem cell transplant, wait for cell count to come back up/recovery.
If Im estimating correctly I wont start chemo for another 6 to 8 weeks and if all goes as planned I would think that Ill be done all this by late July early August 2009.
I dont have much more to report other then this for now, as more information comes up I will post about it. I have hope that this will be the final treatment for my disease and that we will no longer hear the words Neil and cancer together ever again as I plan along with the help of all the amazingly good thoughts being sent my way to beat this thing this time around.

a clearer view....


note:
I have been asked many many time by people who dont know "what is Hodgkin's" or "how is it treated" or most of all people just dont know what the symptoms of what to look for with this type of cancer. For example I walked around with it for years before I ever knew it was cancer. I knew some thing was wrong but I could not put my finger on it, these symptoms are obtuse in terms of what people who dont work in the medical profession would know to look for. I set out on a mission over the last few months to find the best on line resource that would give a good over view of what Hodgkin's Lymphoma is and believe it or not the best resource comes from my own provincial governments website, so here you go to best answer your basic questions about the what, where, hows and why of Hodgkin's please see this link: http://www.healthyontario.com/ConditionDetails.aspx?disease_id=71

recurrent lymphoma??



note:
I wish I was posting some great news but its not. I saw my oncologist/hematologist yesterday and unfortunately, it looks like to him that I have recurring lymphoma. He has set me up for some imitate CT scans for this evening. Depending on where these new masses are I may or may not have a biopsy. So far from what we can tell I have 2 masses in my abdomen and possible another close to my left armpit. I will have a follow up appointment in week, to discuss my treatment plan. However I told me that in his professional opinion, the treatment would be a stem cell transplant. This will require a 4-6 week hospital stay and an extended home stay in semi isolation until my immune system will recover and is functioning properly.

For now the main concern out side of the new growth is that I have a blood platelet count that is below normal, which is called thrombocytopenia (if you can pronounce it you should win some thing). This is a symptom of leukemia or an immune system malfunction (in other words lymphoma). Im not showing any other major symptoms other then I had night sweats a few weeks ago, but it was for only one night and this is a difficult symptom to track as it could have been that the heat was higher then normal in my apartment. I am having some itchy skin but its not like what I had the first time around, where I scratched off my skin pigment or I scratched until I was bleeding. Im not having any significant pain any place so really the only symptom is my blood platelets are abnormal and I am showing some swollen nodes, which is in line with recurrent lymphoma.

I also met with my cardiologist who from the looks of things will move forward asap with my angioplasty before I head into treatment. He wont use a medicated stent but rather use a regular stent, so I dont have to be on plavix for 12 months and instead Ill just need it for a month. My cardiologist told me that he will see about putting in a medicated stent in a year post this round of cancer treatment with the 12 month plavix support, but wants me to get through this round of cancer treatment first. Once the heart damage done from my first round of chemo is corrected I can move forward onto the next leg of my cancer journey.

So it appears like I am about to dawn my cancer fighting warrior fatigues and head into another battle only a year after the initial war was won. I go into this new battle with the wisdom and knowledge I have gained from my previous one, which will help me to gain control over the enemy and once again kick cancers ass out of my body and into the scummy gutter it came from in the first place.

on my second birthday



note:
a lot has gone on over the last year and in some ways its funny how most of it has come to a head around the date of what I now call my second birthday. the date that I was given a second lease on life, early in december 2007 I was told that my scans were clean and no evidence of disease. meaning in simple terms I was in remission.
how ever recently a lot has gone one to make me and even some of my medical team question as to if I really was still in a state of "no evidence of disease". in late november I was sent for a follow up scan of my liver where I had at some point and time in my adult life I developed a hemangioma in the process of this scan the radiologist found what they felt were abnormal or enlarged lymph nodes that were in line with what would be seen as metastatic hodgkins lymphoma. this report was sent to my gp who ordered this scan and then from there to my oncology team who until recently had not been able to give me word as to if this is some thing to worry about or not at this point. in the mean time I had been set up go in for an angiogram test to find out why since I ended chemo a year ago I was experiencing chest pain on some activities, there is no way of telling if the chemo caused this problem or not however it is known that the kind of chemo I had does result in cardiac toxicity but again in the world of cancer and cancer treatment there are never 100 percents (some thing I have learned to live with over the last 2 years of my life). so here we are december 18th 2008, one year post my second birthday, "my cancer birthday" as most would refer to it as.
my angiogram went well, they saw 2 spots in one artery with what Im told are non serious obstructions, one with 20 percent and one with a 60-70 percent blockage/calcification. my cardiologist decided to not do an angioplasty with stent for now in case I need more cancer treatment, as I would need to be on blood thinners for 12 months and mixing blood thinners and chemo at the same time is not a good idea.
so for now we will wait to see what my oncology team says and if there is no planned treatment then we will do the angioplasty with stent in a couple of months time.
what does this all mean? Well the implications are that they didnt fix the problem they only confirmed how bad it was for now. the cardiologist said it was not serious at this point and can be resolved in 20 mins worth of work, these obstructions are in easy to get to spots and are not fully closed off. if they fixed it I would need to be on blood thinners for a year and if I need more chemo because my cancer is unstable again I would have to stop the blood thinners and that would undo the corrective surgery of the angioplasty with stents. So for now until I get official word from my oncology team that I wont be getting any more treatment for at least a year my cardiologist decided to wait to put in the stents and if I get word of no chemo in february we will go in and do this procedure again but this time not just diagnose the problem but rather fix it with an angioplasty and stent with blood thinner support for a year. as for word from my oncology team, I heard back a few hours after I got home from the hospital that, they are not concerned of a relapse but rather that it is unsure if hodgkin's is returned or not and there for if the cancer is considered unstable at this point. the doctor I spoke to on the phone told me that even if my cancer did return that we could wait to treat it that he would prefer for me to get my heart issues fixed so that if they needed to do a stem cell transplant on me in the future they could with out the worry of heart failure. I will see my cardiologist in january and we will arrange a date for this procedure to take place some time in the near future. I will see my oncology team in early february and get more information from them regarding how unstable my cancer is at this point and what I need to watch for. so it looks like my health is in a strange place at the moment not perfect but not bad either, which makes it hard to make choices and decisions about things and how to proceed but Im using all my resources to the best of my abilities to help me make these choices. I know after one full year I dont have the best news in the world to report but maybe this middle ground news is better then some thing awful.

year 1 - post chemo



note: so I made it, its an entire year today since my last chemo treatment. Im still NED so technically what that means is Im in remission, for how long I cant tell you other then I hope for ever. At least that is what my psychological self is saying, my biological self well it could be thinking an entire other thing. since my biological self has no way of talking to me or having logical thought process's I just have to trust my psychological self and hope that no one plays any tricks on me. Life post chemo has its ups and downs and if you have been following my blog you will know all about them, so I wont bore you all with them other then the fact that they are slowly being looked after one after the other. my port came out last week, in 21 days I will have my heart damage looked after with an angioplasty (hopefully it wont be any more complicated then it has to be) and Im currently on a mission to get a referral to an occupational therapist to help me deal with the numbness in my hands (peripheral neuropathy) which has not completely gone away since I ended chemo and does hinder me some what in my thoughts about what my future prospects will be for a career. unlike most people who go through a cancer journey at my age I dont have a job to go back to when Im ready to head back into the work force, so that complicates things some what in some ways and in other ways it leaves the door wide open for me to decide what I want to do for the remainder of the time Im still on this earth. I know it sounds like a tall order to fill but hey I made it through cancer treatment that must stand for some thing in how resilient I am.

saying good-bye to an old friend



note: on the heels of what is soon to be the first anniversary of me ending chemo treatments and being told a few weeks later that there is no evidence of disease (NED) in my final post treatment set of ct scans, I say good-bye to an old friend. my port-a-cath or as I have come to refer to this trustworthy friend of mine "my chemo-port". it was removed this past friday (November 21st 2008), this signifies to some the most important step in the period known as remission for a cancer patient, having their chemo-port removed. a chemo-port can be like a cancer patients best friend during chemo treatment. it not only saves ones veins from complete failure but it helps to insure that you get your treatment in the least evasive manner possible, by not having to be stuck with thousands of needles through out ones treatment. a chemo-port can in some cases make the hell ride of cancer treatment bearable enough to with stand so that one can make it through their treatments with out looking/feeling like a human pin cushion. it also acts as a common signifier for all people living with cancer, a common thing that we all have in a world where even though we all are living with the same disease we never experience it in the same way. it is also a security blanket to some and for others its a good luck charm. to me it was the best friend I could have ever had during my treatment, after my veins failed but its a best friend I am happy to say good-bye too. a best friend I was glad to be able to turn around from and to hopefully never have to see again. saying good-bye to this friend for me means that its time to try to fully close that door behind me to let go of the constant reminder in my body of my own battle with cancer. to never forget but to not always remember, I move forward with my battle scars as memories, I say good-bye to my best friend I loved to hate.

post-chemo angina



note:
I saw a cardiologist this week and was told that based on the tests and the symptoms I explained to him that it sounds like I developed angina some time in the last year. both the cardiologist and my hematologist/oncologist wont fully say so but they are suggesting to me that as a result of all the chemo that I got I could have developed this heart defect, but they cant know for sure. Im going in for an angioplasty with stent insertion Dec 18th (about a year to the date that I was first told that I had clean scans). They dont know how bad my angina is until they get in there and take a look around my heart but they are sure I will need one stent at least if not a few more. All the different heart tests I took showed that there is a small area of my heart that is not getting blood profusion but other then that my heart function is normal, so technically once this is fixed and as long as I continue to take care of myself (eat healthy, exercise, stay at a healthy weight), and take the prescribed medication to keep things in check I should be ok. I trust this cardiologist as I trusted and had faith in my hematologist/oncologist, it feels like I am in good hands once again. I was put on a bunch of other medications blood thinners and nitroglycerin has been added to the mix of my cocktail of blood pressure, beta blocker, cholesterol and other pills I have started to take in my post chemo world.
As scary and as serious as it is that they have to go into my heart and fix a problem I still say to myself its not cancer, in my mind for some reason that makes it less scary but I still need to remind myself that it is serious and that there are risks and concerns for this kind of surgery I mean it is my heart it is the thing that technically keeps me alive. above is what the angioplasty equipment with the balloon and stent looks like, below is a video of the procedure for your viewing. I hope it helps to explain what will be done to me.

deep breath


note:
well I can breath a bit of a sigh of relief at least that is what I was told at my most recent 3 month follow up. It appears that for the last year the odds were not in my favor for a relapse and that after year one post chemo the pendulum swings back into my court and the odds going forward get better and better in my favor against me having a relapse each year. but with that said I was told by a member of my hematology team that even though the percentage rate of relapse going into year 2 of remission is considerably lower it does not mean that I am in the complete clear and that a relapse with the sub type that I have can happen at any point and that it is important that I stay aware of my heath and that I continue to come for my 3-4 month follow ups with them. With this news came the news that my port-a-cath will be removed in late november as now that my risk of relapse is lowered that it is better for me to remove the foreign object from my body so avoid other complications. I have to admit that the thought of having it removed is stirring up similar feelings as to that of a mother taking a baby's security blanket away, Im afraid that taking it out now will jinx me and Ill end up with a relapse 2 weeks later or that my veins are still not ready to be poked regularly for blood work yet. I know logically these are unrealistic fears and that in the end that getting my chemo-port removed is a big step in the right direction towards moving forward and away from being a cancer patient. the question still stands am I psychologically ready for this next monster step away from some thing that has become such a huge part of my life over the last 19 or 20 months of my life, am I ready to put cancer completely behind me? I mean in some ways it is but but having the port removed and being told that I graduated to a lower risk level for relapse is a lot to ask for someone to digest who just went through all that I did over the last yeah and a bit, technically its not even a year since I completed chemo (november 28th 2008 is my year anniversary). how does one re-integrate after having a life threatening illness that turns their entire life upside down forcing them into making major life changes and instigates other long term health issues (I see a cardiologist in 2 weeks and I still have intermittent numbness in my hands and fingers), do you just jump right back into things like nothing happened or do you ease back into it slowly? And what about all the "what ifs", like the hematologist I saw last week said "I cant promise you that you wont relapse 2 weeks after we remove your chemo-port, as it has happened but I can promise you that its not some thing that happens often". I guess this is just one more lesson in how to live with the gray knowledge where there are no 100 percents but to rather to just trust all will be ok in the end and to move forward. I go see a cardiologist in 2 weeks I will learn more about what is going on with my newly discovered post chemo heart defect and what all this means for me beyond more life style changes (which I have started to make already) and more medication added to my daily intake. I know its not the end of the world having this but it certainly does make it hard to move forward from cancer with all these daily reminders hanging around like a heart defect.

The reply.....



note:
after days of waiting for a reply this is what I got, no mention of a retraction or a public explanation but an acknowledgment of the miss communication. Now the question stands do I move forward and request some sort of retraction on their website or sit still and be happy with what they have told me. what do you my readers think? I think I should be asking them for a retraction on their website, but its a hard line to follow these folks are trying to create cures and medicines to cure cancer. its like biting the hand that feeds you do you bite the hand or your own tongue. reply email is below...


from name withheld
reply-to xxxx@standup2cancer.org
to xxxx.xxxxxxxx@gmai.com
date Fri, Sep 12, 2008 at 11:02 AM
subject [StandUp2Cancer.org #231122]
mailed-by


Dear Neil,

Thank you for writing to us regarding the show. The portion of the
program that you are referring to involved a celebrity reading a passage
from a personal story posted on the Stand Up To Cancer website. The
condensed version of this person's story that was used on the show is
misleading as it appears as though the statistics apply to all who are
being treated for Hodgkins Lymphoma. Rather, the 2-year time frame
mentioned in the piece applies only to the current diagnosis of this
individual. We apologize for causing any unnecessary concern.

Best,


name withheld
StandUp2Cancer.org

media misinformation....



note:

This is a letter (and their reply to date) I recently sent to the fine people at standup2cancer.org for the misinformation given out on their recent telethon program with regards to Hodgkin's Lymphoma survivor ship. If there is one thing I cant stand is misinformation via the media, I feel that people with the power of a television broadcast should execute their information well researched especially when it comes to broadcasting information about long term survival of people afflicted by disease.

My on going correspondence is below:

---------------------------------------------------------------------------------------
Hi,

My name is Neil Wiernik, I am a recent Hodgkin's (nlp-hl, stage 3b-s) survivor from Toronto Canada.
I didnt get a chance to see your show, even though I really wanted to I had some other personal appointment to attend to. However I had to deal with a lot of the fall out that your show has caused. In your program I heard second hand from more then one source that you stated that there is on average a 2 year survival rate post a Hodgkin's lymphoma diagnosis. Can I ask you where you got these statistics from?
The majority of the research I have done which is composed of both internet and talking to as many specialists in the field as possible have all told me the same thing: a 5 year relative survival rates are 91.6 percent for all patients who were less than 45 years old at diagnosis; http://www.leukemia-lymphoma.org/all_page.adp?item_id=8312#_survival
I use The Leukemia & Lymphoma Society as my example source as I have found it to be the most useful and accurate for information to show you your wrongly communicated information in your television broadcast. Do you realize that by giving out the wrong information that you would cause wide spread unneeded panic and disspare amongst survivors, family and friends of this blood cancer. I think it would be responsible of you as media producers of this TV broadcast on September 5th to communicate to the public the correct information and to apologize for any kind of problems this false information might have caused people to have (a simple internet search on the Hodgkin's message boards will show you the fall out that this information has caused for Hodgkin's survivors).

I look forward to your reply

Thank You

Neil Wiernik
Diagnosed with stage 3b-s NLP-HL March 07 and still alive!!!
---------------------------------------------------------------------------------------

reply from standup2cancer to date (note its an automated reply):

Thank you for writing us at info@StandUp2Cancer.org. We are receiving a high volume of inquiries, particularly related to the constellation and viewing stars.

If your inquiry is not related to the constellation, please be patient
as we address the technical glitches; a support representative will
responding within a business week.

We appreciate your taking the time to communicate with us, as it is
our goal to work toward the best user experience possible and to make
Stand Up 2 Cancer a valuable tool for everyone.

Best,

Name Withheld
StandUp2Cancer.org
---------------------------------------------------------------------------------------

Also of note September 15th is worldwide lymphoma awareness day which is preceded through out the next few months with the light the night walks. The Light The Night Walk is The Leukemia & Lymphoma Society of Canada's nationwide evening walk. Walkers carry illuminated balloons to celebrate and commemorate the lives touched by cancer. Funds raised will support the mission to cure leukemia, lymphoma, Hodgkin's disease and myeloma - and to improve the quality of life of patients and families. Needless to say getting this misinformation corrected by our "friends" at standup2cancer.org is more important then ever, considering the timing.

chemo related cardiac damage



note:
I found out the middle of this past week that there is what is called a level 5 (there are 11 levels) blockage in my left ventricle of my heart. This means its minor but still at such a young age they are concerned and have put me on 3 new medications to try to fix the problem and avoid me having to have surgery to fix it. If this does not work they will schedule me in to have a stent put into the passage way in my heart that has the blockage to clear it out and to keep it clear. This explains a lot to me, the radiating chest pain into my face when my heart rate would go up in the last few months, the reason why I was having so many dizzy spells towards the end of my treatment (to the point that often I could not stand up for hours at a time), the trouble catching my breath which began towards the end of chemo also. It also explains why I developed high blood pressure during chemo and so on. It is a known fact that the the chemo regime that I got ABVD is known to cause heart damage in at risk or older people but I was in the low risk range and am considered young. Any how the good thing about this is that is is reversible with medication, diet and exercise and if all else fails surgery. This still does not change a whole lot as I have already been trying to eat a healthy organic diet and exercising, the only real major change is the added medication, eating lower fat foods and when I exercise to keep my heart rate around 110 to avoid stress on my heart.

updates updates updates


note:
where do I begin, there has been a lot going on recently in my post chemo world of recovery.
I guess we can start off with the good news July 14th I had my 3 month follow up with the hematologists
and it appears that the SED rate in my blood-work showed up as negative for lymphoma, so I have another
3 months to live. Everything in the cancer world is given in 3 month increments, Im not sure who set that standard
of 3 months at a time but that is what it is. every 3 months I see my hematologist and get both a physical exam
and blood test to see where my SED rate is, they also ask me a number of questions to see if Im showing any
lymphoma symptoms. I bet your asking your self what is a SED rate? a sedimentation rate is common blood test that is used to detect and monitor inflammation in the body. The sedimentation rate is also called the erythrocyte sedimentation rate because it is a measure of the red blood cells (erythrocytes) sedimenting in a tube over a given period of time. Sedimentation rate is often abbreviated as sed rate or ESR. a sedimentation rate is performed by measuring the rate at which red blood cells (RBCs) settle in a test tube. the RBCs become sediment in the bottom of the test tube over time, leaving the blood serum visible above. the classic sedimentation rate is simply how far the top of the RBC layer has fallen (in millimeters) in one hour. the sedimentation rate increases with more inflammation. its this inflammation that can be used as a marker for having or not having hodgkin's, it cant be used as a diagnosis tool but rather as a marker for the need of other tests to determine if I would happen to have a relapse. so far so good in my case. as for the chest pain issues the previous tests came back as negative, the doctors and I were not satisfied with the results as I still have this chest pain so I was sent for both a pulmonary function test and a
nuclear cardiology stress test. I am still waiting on the results of these tests, hopefully they will find some thing that is minor and treatable, so an update about this is still pending.

e-lek"tro-KAR'de-o-gram



note:
in the on going saga of trying to figure out what long term post chemo side effects I may or may not have, it was deemed by both my GP and my oncology/hematology team that the chest pain I have been having post chemo might be actually be heart damage of some sort and there for the last few weeks have been yet another barrage of tests this time what I got was a stress test. A stress test, sometimes called a treadmill test or exercise test, helps a doctor find out how well your heart handles work. As your body works harder during the test, it requires more oxygen, so the heart must pump more blood. The test can show if the blood supply is reduced in the arteries that supply the heart. It also helps doctors know the kind and level of exercise appropriate for a patient. A person taking the test is hooked up to equipment to monitor the heart. You are asked to walk slowly in place on a treadmill, then the speed is increased for a faster pace and the treadmill is tilted to produce the effect of going up a small hill. Afterwards you are asked sit or lie down to have you heart and blood pressure checked. Results usually take a few weeks, but as soon as I know what is causing this chest pain then the sooner we can treat it. Anthracyclines one of the chemo drugs I had, are a group of chemotherapy drugs used very commonly in lymphomas. Doxorubicin (Adriamycin), Epirubicin and Mitoxantrone are some of the commonly used anthracyclines, I had Adriamycin (the A drug in the ABVD). It is well known that at high doses these drugs can cause heart damage, occasionally leading to congestive heart failure (CHF) months or years after chemotherapy.
Doxorubcin (Adriamycin) is the drug most commonly implicated in heart failure because it is widely used for lymphoma (being extremely effective) in many chemotherapy regimens including ABVD in Hodgkin's lymphoma, which is the drug therapy I had and is why we are where we are today with me getting the stress test. Below is an example os what kind of equipment is used in a stress test. Also just for fun sake a video by one of my favorite music artists kraftwerk their version of what an e-lek"tro-KAR'de-o-gram is like.

the cytogenetics of...



note:
I realized some thing recently that I often talk alot about they rare sub type of hodgkin's that I had/have and how it is technically a chronic kind of lymphoma that relapses often however I have never really provided any sort of medical reading for any one to look at to fully understand what I have beyond what I have talked about from my own findings. Biology, Clinical Course and Management of Nodular Lymphocyte-Predominant Hodgkin Lymphoma
is a great article written in the last few years that explains a lot about NLP-HL the sub type of hodgkin's lymphoma that I am currently in remission from. The basis of what makes NLP-HL different from classical HL is that NLPHL is characterized by atypical "lymphocytic and histiocytic"(L&H), or "popcorn" cells, which are embedded in background of progressively transformed follicles. These contain follicular dendritic cell networks, follicular CD57+ T cells and plenty small lymphocytes of B-cell origin
see the above picture to view what the chromosomes of said cells are like and below to see what a NLP-HL cells looks like. Also this other article is a good brief run down of the what, where and hows of NLP-HL and is also very helpful for thoughts of you in the dark about it as I had been for so long not fully understanding what it was exactly that I had/have.

small parts isolated and destroyed?



note:
it has been a while since my last update and well really I dont have a very original excuse other then I am just dealing with life post cancer treatment which as I have expressed earlier has its ups and downs. there is a lot of thoughts going on for me as a lot has occurred since my last post. for one may 2nd was another anniversary in my cancer history, on may 2nd 2007 I began chemo treatment. is this some thing to celebrate? maybe I mean it is the anniversary of the beginning of me starting the treatment that has hopefully helped me to over come my illness. the beginning of the title of this post "small parts isolated and destroyed", well maybe chemo is not as an exact science as the title suggests but it certainly does destroy a lot of small parts in my body and there for I more then relate to what the title says. on may 5th I had what was technically my first real follow up post chemo with my hematology team, I had
my first blood work done to check my SED rate post chemo and as I have said in the past no news is good news. along with the blood work I had a full body work up poking and prodding to see if any of my nodes appeared to be swollen or to be of concern. the node that was being watched the last time I saw my hematology team is still of concern and being watched. it still appears to be slightly larger then it should be but not large enough to warrant a biopsy yet but is still large enough to be of concern enough that they are watching it. I have been having what I thought was some lung issues that I brought up to the doctor I saw that day and she felt that after the clean chest x-ray that they took that day that the chest pain Im having might be heart damage and not necessarily lung damage from the chemo. so I am being sent for a stress test to see what is going on, regardless of what it is this chest pain and shortness of breath has really effected my quality of life and in some ways has pushed me back a number of steps in the progress I have made thus far since ending chemo. for now I am mostly trying to figure out what are my limitations are or what my "new normal" is, this is a bit of a daily struggle for me to figure this out as some days are better then others and for what ever reason I cant seem to pin point what causes me to have a good or bad day. Im still dealing with numb hands and feet but Im slowly adapting to this and figureing out what I can and can not do but when it comes to things that concern my heart, lungs and strength/energy it seems to be hard to figure out what I can and can not do. I assume over time I will discover what my "new normal" is but its a slow process, its literally like baby steps. 3 steps forward one step back, but how I look at it is any steps forward are less steps to go. so for now Im focused on figuring out
my limitations, understanding what kind of post chemo side effects I have and which ones I will have to live with and staying healthy, hoping for a life time of remission and good check ups with my hematology team. these hopes are sometimes some thing that is hard to keep a focus on when you know that the kind of lymphoma you have is chronic and can come back at any time, but like I tell people all the time: "it is what it is."

my first virus



note:
I have been waiting for this to happen now for almost a year, or at least wondering when it would happen. I never thought I would ever say this but Im glad it happened when it did and not say 6 months earlier. I finally got my first virus since I was diagnosed with cancer and started treatment, its not some thing I was looking forward to and for good reason. My immune system was under attack for the last year first by the type of cancer that I had/have and then secondly by the treatment of said cancer.
I kept thinking to myself "ok when is it going to happen, when am I finally going to catch a cold or a flu?" well it had finally happened, a little over a week ago my immune system finally let go and allowed the most horrible flu of my life to take hold. now when I say horrible I mean it, I dont know if it was because I had just completed nearly a year of bi-weekly abvd chemo and that my immune system was not up to par or it was just a really nasty flu but this thing had me thinking that I was back to my chemo days. Its funny you do all this work to get over cancer, go through chemo heal from that and then some thing as small as a flu makes you feel as bad as you felt when you were getting chemo. I think the worst thing of all was that because I just had chemo I was not allowed to get the flu shot this year, so I was like a
sitting duck waiting for it to happen and when it did it took me completely off guard.
what has mostly been going through my mind about all this is how would have I faired against this flu had I never had Hodgkin's Lymphoma would had I tackled this as if it was a common cold and just gone on about my business, or has my immune system really taken a beating over the last year and this is part of my new reality that when I now catch a cold Im out for the count for a week in bed? Is this part of my "new normal",
shall I expect these types of situations when I now catch a cold or was this just one ugly flu virus?

anniversary?



note:
ok so its March 22nd 2008 and Im alive, in fact Im happier then I could ever explain to be alive, I am thankful and at peace with it. a year ago today I thought very differently, that it was the beginning of the end for me. March 22nd 2007 I received what I at the time had viewed as the worst news of my life. It was on this date in 2007 that I was given my initial diagnosis that I had NLP Hodgkin's Lymphoma. it was the first of a series of test results that I would get over the next 2 weeks that would eventually lead me to the fact that I have stage IIIa Nodular Lymphocyte Predominant Hodgkin's Lymphoma. Better known as NLPHL the rare almost never seen kind of Hodgkin's Lymphoma. This subtype in the past has been known to be indolent and never really goes away but Im on a mission to prove things wrong, by having a life long remission never to see my disease again. but I also know in my heart if I do I can once again put cancer in its place. so I have been trying to think of how to mark this occasion, do I celebrate it? do I go out for a dinner, throw a party, eat some cake, light a candle? I mean what am I really celebrating that the doctors found out that I had/have cancer or that its a year later and Im alive? Im still standing a year later that in it self is an accomplishment and as such I am very proud to tell people hey "I beat cancer, I kicked its ass". But you know becoming a survivor (again I dont like this word it has some strange implications) has a whole host of other things that you carry with you for the rest of your life. Its not like its over a year later, every little health thing now becomes an issue for me. For instance I am now monitored by my hematology/oncology team for the rest of my life, my GP watches over me now like a hawk, and in doing so has found new things wrong with me that in the past were not an issue like a hepatic hemangioma on my liver, which we now have to watch and make sure does not grow to large. I have had to re-adapt to how I do things because I have things like peripheral neuropathy in my hands and feet and I suffer from a debilitating fatigue that can strike at any time leaving my bed ridden for days the list goes on but I wont.
So is it ever really over, I dont think so, is there some thing I can celebrate yes there is. I can celebrate having the privilege of life. So today I celebrate being alive, not with a cake, not with a huge dinner, not with a party or even with a candle. but I celebrate life by being thankful for still being here 12 months later, by being thankful for all the loving caring family, friends, doctors, nurses and other support networks I have that have helped me along the way. To all of you I wish you namaste.
PS as an update to my last post regarding the barrage of tests other then the hepatic hemangioma and a few other really minor things all the tests came back with positive results.

the grey knowlege



note:
just a quick update about what has been going on for me and my post chemo world, looks like the long term side effects have become enough of an issue that my GP has decided to send me in for a barrage of tests: blood work, an ultrasound of my torso, and a 2d electrocardiogram. These tests only address the most urgent of the problems I have been seeing since ending chemo (dizzy spells, blackouts and pain in the area of my liver). the other things like neuropathy I have been experiencing in my hands and feet or the constant battle Im having with physical fatigue, are taking a back seat until we figure out these 2 other potentially larger problematic long term chemo side effects, despite how painful and problematic living with numb hands and feet is, or feeling fatigued all the time and having to change some of the ways in which I do things is not nearly as problematic as say my heart or liver not working properly. for now I am once again in the grey world of not knowing what is wrong with me, but Im hoping that these tests will give me more insite into what needs to be done to solve these potentially life threatening problems. Its funny you get rid of one thing that can kill you and the treatment for it develops others. more as soon as I know more, but for now its the grey knowledge that I have to live with, not knowing.

the results are in



note:
I just got word of the results of a study I had been waiting for since I was first diagnosed with NLP-Hodgkin's Lymphoma (see earlier posts that describes my particular sub strain of NLP-Hodgkin's Lymphoma as compared to classical Hodgkin's Lymphoma), the results are in and they look good to me. You can read all about it here:
Rituximab Effective for Some Types of Relapsed Hodgkin's Lymphoma

correction: it is behind door number 6



note:
yesterday after 24 hours of waiting with the written report from my ultrasound in my hand at home (talk about temptation) I saw my hematology team for the results of the ultrasound, to see what was going on with the new lump in my neck. well the new lump was really an old lump, that appears to maybe gotten a little bit larger then it was 2.5 months earlier. explanation for this? well there are many: the most likely one we are going with is that I could be fighting off a virus of some sort (remember lymphoma is a cancer of the lymph system and even healthy peoples lymph-nodes swell up when they are sick) because I had/have a cancer of the lymph system and my spleen was damaged as a result Im not as good at fighting off infection as a healthy person is so when it happens with me my nodes swell up larger and for longer, basically I get sicker. the other explanation could be my cancer is back or never really left, how ever because the node is far to small at this point to biopsy we are going to go with the first theory and assume that its not a relapse and that I am still cancer free. we decided to take the stance that Im just fighting off some sort of infection. so its really a wait and watch scenario which is no different then the 3 month follow up regime I have been on since december when I was done treatment. therefor I am back on my 3 month follow up regime and we will revisit the size of this node again only if it becomes large enough to biopsy other wise its life as usual for me, or as usual as can be. the short of it behind door number 6 there was no cancer, behind door number 5 well that is still questionable.

and what is behind door number 5



note:
this is a series of emails that I recently had to send to a member of my cancer team

From: neil wiernik
Date: Jan 30, 2008 9:53 AM
Subject: new growth?
To: XXXX.XXXX@uhn.on.ca

Hi XXXX

Sorry to bother you like this, but you know I would not do so if I was not feeling like there was reason to.
It feels like I might have some new growth in my neck close to the site where I had my biopsy in march 07. It feels like there is a mass, Its been pretty sore, tender almost painful for the last 2 days and when I check the other side of my neck there does not appear to be any similarities in how the area feels (ie its not muscle). I dont know what to think, I have a follow up appointment for March 17th with you guys but I dont know if I should wait until then or do you think you guys would want to see me sooner? I have been showing some other symptoms for a few weeks like itchy skin and fatigue but I just figured that it was winter and my skin was dry and I was feeling tired because I was doing a lot of things that I had not done in 10 months like going to the gym. But now that this thing in my neck appears to be there Im not so sure now, it might be scar tissue but I dont remember there being any scar tissue there before and would scar tissue become sore and large feeling like this?

What would you like me to do? Do you guys need to see me before March 17th or should I wait for the 6 weeks until my appointment with you guys and just observe this in the mean time?

Thanks in advance and again sorry to bother you like this.

Take care

Neil
---------------------------------------------------------------

From: XXXX, XXXXX
To: neil wiernik
Date: Jan 30, 2008 3:08 PM
Subject: RE: new growth?

Neil - you should come on Friday morning (9ish) and someone can exam your neck.
----------------------------------------------------------------

From: neil wiernik
To: "XXXXX, XXXXX"
Date: Feb 3, 2008 5:43 PM
Subject: Re: new growth?

Hi XXXXX,

Just a quick question about my ultrasound and follow up with you, the only date we could get for it was at TGH on Feb 12th and the follow up with you is on Feb 13th will that be ok? Will you be at the clinic on Feb 13th, its a Wednesday.

Thanks again

Neil
---------------------------------------------------------------

From: XXXXX, XXXXX
To: neil wiernik
Date: Feb 3, 2008 6:51 PM
Subject: RE: new growth?

that is okay - XXX told me about the booking
if things change drastically, call me
yes I will be there on the 13
----------------------------------------------------------------

watch me create a new reality



note:
I know its been a while since my last blog post, I have been busy trying to readjust to my new reality. so Im done treatment, I had clean scans, now what? well most would think that would mean its all over and done with and I can return to my life before cancer, but can I? that is a good question, can one go back from where they came from when they have gone through so much? can one be the same after they have visited questions like your own mortality? being diagnosed with cancer, living through the treatment and all the other things that occur while your fighting cancer can have a profound effect on ones view of the world. what was once important is now not, many of the things that you occupied your emotional and physical energy and time with before now seem frivolous on so many levels compared to the bigger picture of "life". I can picture it now people are thinking "what is he going on about". well think about it when your dealing with issues of mortality and long term survival, after your done with cancer treatment and given the clean scans speech: "your ok now, but we are going to watch you for the rest of your life", things like saving for your "future" or trying to keep up with the jones's are not at the top of your list. ones view of reality gets twisted from what it was once was and redefined. a new reality comes into play, this reality is different for every "survivor", I for one have taken on this view to try to live every week like it possibly could be my last one. what do I mean by that well just to live in such a way that I feel like I have no regrets in the way I am living my life. one of the most important things I have learned through all this is to live in the moment to not get caught up in living in the past or thinking too far ahead into the future. too root myself in the present, this is not a new concept in fact it is a very old one. the concept is better known as the buddhist idea of mindfulness, which was in recent years brought to westerners in a more digestible package by
Jon Kabat-Zinn dropping the religious aspects of this concept. what is mindfulness your asking: Jon Kabat-Zinn’s definition of mindfulness is: “paying attention in a particular way; on purpose, in the present moment, and nonjudgmentally.” ok now I bet your all asking your self "how on earth did Neil come to this, he was never into this sort of stuff before". I think I might have mentioned this in one of my earlier blog posts about a year ago when I started this blog to document my life living with cancer, I made myself a promise to have an open mind going forward to explore all that needs to be explored for me to understand the disease I have/had and if it meant visiting ideas and thoughts I never would have gone to before then so be it as long as it helps me with understanding my new reality. in this journey of exploration, I came across 2 programs that opened me up to the idea of living in the moment to not occupy myself with the past or the future. the first program I explored and am still exploring is the healing journey program founded by Dr Alastair Cunningham, The Healing Journey is a program for people who want to learn how to help themselves when they have cancer, or other serious chronic diseases. It is a practical course, providing simple, psychological and spiritual tools which promote inner harmony, peace and healing, methods that can help any of us become a "healed person". The second program was founded by Jon Kabat-Zinn called mindful based stress reduction. the mindfulness based stress reduction program, teaches how to use ones innate resources and abilities to respond more effectively to stress, pain, and illness. the central focus of the program is intensive training in mindfulness meditation and its integration into the challenges/adventures of everyday life. there you have it one (really 2) of the steps of how Im picking up the pieces of my former life and creating a new one. by the way I dont feel the least bit comfortable using the survivor word simply as it implies one who outlives another and that we are alone in this process but really we are all part of a community fighting for the same thing life, and this community is not in competition to out live one another, but rather we all want the same thing. I will stop here as really this could be a whole other blog post, but I will revisit this notion of cancer survivor and fighter in a future blog post.

This is the education I didnt ask for



note:
In my fight with cancer I met lots of really wonderful people, some were momentary meetings and others became close friends. I refer to these cancer fighters and survivors that I have met along my own cancer journey as warriors, we share a sense of community fighting for a similar cause, life. One such warrior, who I had become close with life ended on Monday morning. her name was Grace, even though I did not know Grace for long she was in my heart. A few weeks before her passing Grace and I had been corresponding back and forth about the some of the recent developments in her illness and my recent remission, that conversation inspired me to to write some words about what it meant to go through a cancer journey.
It was because of the conversations that her and I had that I was able to come to these thoughts, thoughts I only hope she was able to take with her.

"we have been poked, prodded, had parts of our bodies removed, things added into our bodies, organs and parts destroyed or altered, toxified with chemo and other drugs. regardless you know what you, I and others like us, are living breathing people, we are human and are special people by going through this experience, we are warriors!!!! we are the best kind of fighters out there: fighters for life!!! and when all is said and done we are survivors of the most special kind, survivors that have an understanding of life that only a few understand, we are touched people that makes us more then special people. so yes we are shadows now of our former self's but that is only because it is part of the transformation that this experience brings on to us as people"

This post is dedicated to all the lost warriors most of all to Grace (1964-2007), who allowed me to understand the true warrior spirit. Grace may you RIP my friend, you will always be in my thoughts.

visit to the hematologist - my welcome to club remission



note:
Today the sun came out and its bright healing golden light touched me, Today I was told that I have a new lease on life.
My scans from last week came back clean and Im am officially in remission. Now I have 2 birthdates Dec 31 1967 and Dec 17 2007. This year not only do I get to celebrate turing 40 but I get to celebrate life in general. I went head to head with cancer and won my fight. Chemo was the battle, now Im a survivor, now the real healing begins over the next months I will take care of myself and make sure all the wounds I incurred in my battle with cancer heal up properly so that my story can be told and the knowledge I have gained from this experience can be shared. What does all this mean well, from this point forward I am on what is called the maintenance plan, every 3 months going forward for a year I go in to be checked by my hematology/oncology team, then after a year its every 4 months for a year and after that every 6 months going forward for the rest of my life. They told me today the most critical time going forward is the first year in terms of having a relapse the chances decrease with every year but its not unheard of to have a relapse in year 10, its rare but not unheard of. The other important things they need to watch me for in the coming months is if some of the longer term side effects go away, stay the same or get worse, the one they are most concerned about for me is peripheral neuropathy. I have been showing worsening signs of the peripheral neuropathy since I began chemo, but its not to the point that they can do more then watch to see what happens as I still have use of my hands and feet they are just numb/tingely all the time. So its more a nuisance for me then any thing else its not really painful its just annoying and weird feeling. Besides to me some foot/hand numbness is a small price to pay to have my life back. All the other side effects like fatigue, short term memory loss and others should go away with time.

Chemotherapy - ABVD - day 16, the end of cycle 8



note:
its finally over and done with, at least this leg of the journey is. no serious issues this time around seems like my port-a-cath has become fickle in its old age and now in order to get blood return from it I have to raise my arms in the air and turn my head to the left and cough. sort of like playing chemo-twister but less fun. any how going forward until I get the port removed (Im guessing in march 2008 some time) all Ill need to get done is to have the port flushed once a month to make sure there is no clots building up around it. I also got to ring the bell along with all the others that did so in solidarity with me yesterday, I made sure to ring it extra hard so that my family and friends around the world could hear. above pictured is the bell I rang in the chemo day unit.

hematologist visit, I can breath again



note:
my most recent visit to the hematologist was one of the most hopeful ones yet, it turns out that even though in the past I had been told that the the type of hodgkin's lymphoma I have was chronic and will relapse again and again through out my life. but according to the most recent data from research being done into the sub-strain of hodgkin's that I had NLP-HL
that if it is treated like classical hodgkin's that it behaves like classical hodgkin's. what does all this mean well what it means is
that in the past this type of hodgkin's I had was treated less aggressively and was believed that it relapsed often and was a chronic form of lymphoma (in other words not curable). but with the most recent data collected that NLP-HL if treated like classical hodgkin's is treated, that after a 5 year state of remission I can be declared cured. now how do I declared to be in a state of remission well my next set of scans on Dec 12th will help to do that, if things all look good and that the first line of treatment has fully worked they they will officially declare me as in remission and from that point forward I will be watched every 3 months for scans to make sure I stay in remission for 5 years so we can say that Im cured. as I said to myself when I walked out of the office this week I can breath again.

lymphoma information session



note:
nov 20th 2007 I was invited to participate in a lymphoma information session as presented by the lymphoma foundation of canada and PMH. The 2 presenters were 2 of the people from my cancer team at PMH who I greatly respect (along with the rest of the team) and was honored to be able to absorb 3 hours of their knowledge on the subject. one of the most important things I walked away from this information session was that beating and treating lymphoma is as much an art as it is a science. maybe that is why I have found some of the most profound artistic inspiration through my cancer journey then any other point in my life. or maybe I just deal with my life crisis with an artistic response, who really knows but as much as I enjoyed learning about the science of the treatment of these types of cancers I was happy to learn that it was equally a creative artistic process as well.

Ring a Bell in Solidarity



note:
Hi All
Im not sure how many of you are on facebook or not but I created an
event that I would like my family and friends to know about here is the link in
case you are on facebook (if you are add me as a friend please)
ring a bell in solidarity

and if not here are the details of the event I have created

Ring a Bell in Solidarity
help symbolize the end of my chemo treatment
starts
Wednesday, November 28, 2007 at 9:00am Toronto Time
ends
Thursday, November 29, 2007 at 12:00am Toronto Time
Location:  WHERE EVER YOU ARE

ring a bell in solidarity to help me symbolise the end of my
chemotherapy treatments. On Nov 28th 2007 at 9am
I will have my final chemotherapy treatment. After 8 months of chemotherapy I will be finally
ending this round of chemo treatments (and hopefully my final round ever). I am asking that
on this day my family and friends take a moment out of their day to
ring a bell in solidarity to help me symbolize the ending of my cancer
treatment and the beginning of my new lease on life. Because I cant
judge when exactly I will be done my final treatment that day (it can
take any where from 3 to 8 hours depending on how things go) I am
asking that you take just one moment out of your day on Nov 28th and
ring a bell of your choosing where ever you can find one beginning at
9am. Again I want to thank all of my family and friends who have given me
so much amazing support during this time, it is not some thing I can
ever forget. You all hold special places in my heart.

additional information regarding this project:

First of all I want to thank every one from the bottom of my heart for making the commitment to taking a moment out of your day on Nov 28th to ring a bell to help me commemorate the ending of my chemo treatment and in turn to help create a profoundly intense global energy that the resulting 150 plus bells that will be rung through out the day on the 28th.
As part of this project I would like to ask you all as participants to record your bell sounds for me (if you are able to that is) and email me the recorded file (preferably in mp3 format) to
chemobell@gmail.com
I plan to compose a piece of music from the resulting recordings that are sent to me to. The end result will be used as a soundtrack to a series of images I have been taking since the beginning of my chemo treatment. I have not yet decided how these images and the soundtrack will be presented yet, but as soon as I decided on the presentation method you will all be made aware. I will give full credit to everyone regardless of how the final results will be presented.
Please don't feel obligated to record your bell sound, just the fact that you are taking time out of your day on Nov 28th to ring a bell in solidarity for me means a lot to me already, how ever if you are able to do so and have the means to do so I will be forever grateful for your extra commitment to this project. Feel free to record your bell sounds after the fact if cant do it when your doing it, I will accept recorded bell sounds until the end of December 2007. Also do not worry about sound quality I will accept and use all different quality of recordings of your bell sounds.
Please include the following information in the email with your recorded sound:
your full name
location (city/country)
the time you rang your bell at
and
what you used as a bell
If you have any questions please feel free to email me
Thank you in advance for participating.

early morning visit to the ER




note:
Sunday night, well more like early Monday morning I started to run a high fever and after a phone consult at 2am with the on call nurse at the hospital I'm being treated at, it was agreed that I should go to the ER to get some tests done to make sure I don't have any viruses. this is a regular procedure when running a fever when going through chemo especially when your white blood cell counts are as low as mine have been. the reason for this is that with out white blood cells, you have no immune system to fight off infection and you can become septic very quickly which complicates things to a much further extent then they already are. after a few hours of stressful tests (that included many blood tests, x rays and a cardiogram), my port-a-cath not returning blood, 4 needle pokes to get blood from my unhappy veins (that still are not working properly) and some very nerve wrecking time waiting for results, I was told to head home. The tests all came back negative for any virus's, Im still waiting on the blood cultures which should come back some time today but from the looks of things I was running a fever due to my tumor breaking up and my body reacting to that. on a good note my white blood cell counts came back with a neutrophil count of 3.7 up from 0.4

homecare nurse - neupogen shots day one




note:
the shots sting a little bit and cause me to have some bone pain as the bone marrow starts to produce more white blood cells but these are small problems compared to the bigger picture that this procedure will allow me to complete my final cycle of chemotherapy on Nov. 28th. The first shot was administered to me in the hospital yesterday the remainder 4 I get from a home care nurse that the province provides to me to get these shots.

Chemotherapy - ABVD - day 15, the start of cycle 8




note:
the final blood test results are in I'm still at a dangerously low level for my neutrophil counts (0.4), we have proceeded with the chemo for this cycle and the doctors have put me on to a 5 day regime of neupogen shots to help stimulate my bone marrow to produce more white blood cells where the virus fighting neutrophil cells (a type of white blood cell) is also produced.

hematologist visit



note:
after 7 months of chemotherapy looks like my neutrophil counts have finally dropped to the point where they need to give me the neupogen shots so I can continue on with my final month of chemo cycle 8.

personal update



note:
as promised a long time ago I would post self portraits of me from time to time, so you can see physically how I'm doing.
I don't know if you can tell from the out side but on the inside I certainly feel like I am about to start my 8th and final month of chemo. I feel sick almost all the time now, my body is showing every possible side effect in the book now and my recovery time after chemo really only gives me 4 good days before my next treatment. It makes it harder on me in that up until the 6th month I would at least have 9 good days before I had to go for chemo again. I know its all for a good cause: my life and that any thing worth fighting for in life does not come easy. Nov 28th is when I'm scheduled for my last chemo treatment, I'm planning to gather as many people together that day to come to the chemo day unit at PMH to have "an end of chemo bell ringing party" with me. so if any of you want to show up that day let me know Ill tell you what time I should be completing chemo at and ringing that bell (I need to ring it loud enough for my family in Montreal to hear). 

Chemotherapy - ABVD - day 14, the end of cycle 7




note:
there was some concern that I wont be able to get chemo this past week as my neutrophil (these are the most abundant type of white blood cells and form an integral part of the immune system) counts dropped to a new all time low of 0.7 a healthy persons neutrophil counts are in the range of 2.0 to 8.0 mind for the most part has been hovering in the range of 1.6-1.7 through chemo and for them to drop further is normal when under chemotherapy treatment. the main concern was that being below the marker of 1.5 was of concern if they wanted to give me the chemo or not. my hematology team had chosen to allow me to get chemo as they have seen these white cell counts come back up from 0.7 and because of the aggressive treatment I am getting they wont hold off on my treatment unless my cell counts go below 0.4 and I become dangerously neutropenic at which point they will put me on daily shots called neutropagin but this wont be necessary unless my counts drop to 0.4 or below. neutrophils quickly congregate at a focus of infection which is why it is so important to make sure these counts are stable when going through chemotherapy.

the results part II visit to the hematologist



note:
once again the sun was shining on me monday
Here it is officially, after 2 miserable weeks of worry and distress,
I was told today that the uptake on the gallium scan came back
negative for cancer and that all my nodes have shrunk some
more. so it looks like the concern was over scar tissue and not active
cancer. They didn't give me more info then that, we keep going with
the chemo, as originally planned.

Chemotherapy - ABVD - day 13, the start of cycle 7




note:
started into the 7th month of chemo last week, I was thinking OK how bad could it be most people go on this type of chemo regime for 6 months, I'm going 8. well I was underestimating things, for the first time in my entire time of chemo I feel horribly bad. I'm not talking about a few hours or a day but what I'm talking about is multiple days, never ending feeling of fatigue, nausea and foggy brained. my energy level is non existent right now which is the most frustrating side effect of them all. It goes beyond being sleepy but there is just this lack of energy to do any thing even some thing as simple as lifting my arm up, its unlike any thing I have ever felt before and in many ways is soul crushing for me. I'm sure for thoughts of you who know me know that my energy levels are usually boundless so you can just imagine how this makes me feel, when its a challenge for me to walk to the corner. I just keep telling myself that its only another 3 more treatments then I can rest and figure out the next steps.

post scan hematologist visit



note:
I finally went for my scans late last week and early this week and unfortunately the initial were not 100 percent very favorable
so right now I'm trying to dust myself off so I can stand up tall and be ready for the next leg of the
fight. I'm scared but looking I'm staring down my cancer every day strait in the eye and telling it to go away.
so  the results, its sort of not good news but not bad news, in fact its really a
sort of watch and wait situation.
they think and could not conclusively tell me for sure until they get
back the full scan results but it looks like I might be in
relapse/refractory. from the initial report, that the first
radiologist gave to them my lymph nodes in my neck
that had shrunken seem to be getting larger again or has not shrunk fro the last scans 3 months ago.
but they cant tell for sure and need to get the full radiology report back, with pictures of
the ct and the gallium scans them self's, so my hematology team can
make a proper assessment.
It can be one of a few scenarios, if the gallium scans come back as
positive for cancer and the ct's show the nodes are growing again then
it means that we have to resort to a a much more aggressive treatment,
which means high dose chemo and a stem cell transplant (this is an
intense treatment and requires about 2 months of hospital stay and a number of months of home recovery time),
but for now we are all thinking and hoping that I'm not in relapse/refractory but rather the gallium scan will
come back negative for active cancer and what appears as a larger node is really scar tissue or tumor that has not fully shrunk but is dead. This is common with bulky tumors which I has in both my neck and on my spleen.
If this is the case that it is scar tissue then they will try 4 more cycles of the same chemo that I'm currently getting and then spot radiate the bulky site to break the tumor up more.
so in the mean time, they are taking the assumption that it is scar
tissue and there for continuing me on with the treatment as planned
for until December. the doctors will only visit the topic of having to take on a more aggressive treatment for
me and do a stem cell transplant once they have gotten every thing together and seen evidence that is needed as such. They did a full body exam and didn't feel any enlarged nodes to be concerned about. Also I'm not showing any symptoms of disease (night sweats, fevers, weight loss, itchy skin, pain in a location etc etc) so they are leaning on
the side of the scar tissue for now as that is the physical evidence they can see right now with out the full scan reports.

So for now I'm back in cancer limbo land for 2 more weeks when they see me next. they told me if any thing urgent that needs to be addressed asap they will call me in right away. I know in the past I have said that there will be bumps in the road, I was just hopeful that this was not going to be the one, For now I'm looking at it like this no news is good news.

Chemotherapy - ABVD - day 12, the end of cycle 6



note:
living with cancer is not an easy experience as I'm sure a lot of you reading this know or could imagine. I have gone through all kinds of emotional feelings through this: loneliness, fear, hopelessness even sadness, angry and confusion, but it would not be fair to say that I feel like that all the time, in fact I feel like that a very small part of the time as compared to all the time I actually feel at peace with my illness, knowing that its some thing I can beat (am beating), I feel constant hope, knowing that every day I wake up its a new day with new possibilities of a cure and most of all I feel joy knowing that I am in the company of others that care. one of the most wonderful things I have found even re-discovered is that  I have some really wonderful caring people in my life.  people that are kind enough to take time out of their day to come and sit with me through chemo treatments, go to doctors appointments with me, go with me to tests,  come to get results from tests, listen to me when I need to talk or vent, people willing to sympathise with me as best as they can, friends and family that have rallied around me to help me in which ever way they can (and in which ever way I'm willing to accept this help, as learning to accept help is hard), most of all I have people in my life that inspire me. I guess what I'm trying to say is thank you for every thing, I am grateful for every ones help, no matter how small of a thing you might think it is that your doing for me its actually a huge thing for me.

hematologist visit and a great article





note:
not much to report and like I have said in the past no news is good news when your in the shoes that I'm in.
but since there is nothing to report that is new I would like to share a very educational academic article that was passed along to me with regards to the specific type of Hodgkin's that I have nlp-hl.
nlp-hl vs chl
I learned a lot with regards to my specific sub-strain of Hodgkin's that I did not know before, the source is very reputable so read away there is a lot of good information here to learn from.

Chemotherapy - ABVD - day 11, the start of cycle 6




note:
nothing really to report other then I'm begining to feel more of the side effects, for longer and more intensly then before, this is a result of the accumulation of all the chemo drugs in my body. for now its just the fatigue, the nausea, the flu like aches and the numbness in my hands and feet that I'm feeling worse and for longer now, but these side effects I can cope with. For the most part I have found ways around these side effects that work for me so I'm OK with them. I mean its not much longer I'm in the home stretch now so its OK, I'm just motoring along.

hematologist visit





note:
visit with my hematologist this week, we checked out my portacath to see how it looks, every thing looked normal. we also discussed the scheduling of my next set of scans, which are booked for October 12th and October 15th. I'm set to have a standard set of CT scans on the 12th and then on the 15th a gallium scan. The CT scan is to measure the amount of shrinkage that my tumors have shrunk since the last scans and the gallium scans are to measure metabolic activity in my tumors and in my body. metabolic activity is important as this tells us if I have active cancer cells lurking in my body or not. this round of tests will tell us if we we can end my chemotherapy treatment at that point, if we need to continue on for the planned 8 months of treatment which means I would end treatment in early December or if we need to alter my treatment to some thing else. so some major options will have to be decided on October 15th, which of course I will keep you all posted on.

energy healing powers and coping skills



note:
I decided a long time ago after I was diagnosed with Hodgkin's lymphoma that I was going to to be as open minded as possible to things and make an effort to take an active role in understanding my illness and into helping the healing process that Im going through. If you know me, like some of you do, Im not one to follow things blindly, so when I decided to take an active role in my battle against cancer, I made sure to know and understand these methods of complementary therapies that I have choosen. My path to helping myself was not easy as there are so many choices out there and some work better then others for different people, but in the end I think I have choosen the methods that work best for me. These are the the alternate healing methods I have been doing in conjuction to the chemotheraphy :

Relaxation: relaxation techniques are used by people who wish to relax, for a wide variety of reasons. Since the 1960s, research has indicated strong correlations between stress levels and physical and emotional health. Meditation was among the first relaxation techniques shown to have a measurable effect on stress reduction. the type of relaxation technique I use is visualization or guilded imagery.

Reiki: teachings state that there is a universal 'life force' energy, which can be accessed by practitioners to induce a healing effect. It is claimed by believers that anyone can gain access to this energy by means of an attunement process carried out by a Reiki Master. The belief is that the energy will flow through the practitioner's hands whenever the hands are placed on, or held near a potential recipient, who can be clothed. Some teachings stress the importance of the practitioner's intention or presence in this process, while others claim that the energy is drawn by the recipient's injury to activate or enhance the natural healing processes. Reiki is a form of spiritual practice, used as a complementary therapy, proposed for the treatment of physical, emotional, and mental diseases. Mikao Usui developed Reiki in early 20th century Japan, where he said he received the ability of 'healing without energy depletion' after three weeks of fasting and meditating on Mount Kurama. Practitioners use a technique similar to the laying on of hands, which they say will channel "healing energy" (ki). Practitioners state that energy flows through their palms to bring about healing and that the method can be used for self-treatment as well as treatment of others.

Psychological self help through the the healing journey program (www.healingjourney.ca): a progressive, stepwise program for cancer patients interested in doing more to help themselves, as an addition to conventional medical treatment. Recent research, both at the Princess Margaret Hospital and abroad shows that undertaking psychological self help work of this kind almost always improves quality of life, and may in some cases help people with cancer live much longer, as well as better. The skills learned through the Healing Journey Program can improve communication with others, lessen anxiety and depression, and provide a welcome sense of control. Healing is a progressive process which depends on a gradual increase in understanding and "connection" with all parts of ourselves. This program uses techniques that are a combination of deep relaxation and guilded imagery along side teaching an understanding illness and how to make the needed changes in ones life to help cope with living with cancer and the resulting changes that occur in ones live as a result.

Art and Music: The purpose of art therapy is much the same as in any other psychotherapeutic modality, to improve or maintain mental health and emotional well- being. But whereas some of the other expressive therapies utilize the performing arts for expressive purposes, art therapy generally utilizes drawing, painting, sculpture, photography, and other forms of visual art expression, in my case I have included my music making parctice into this process as well. art therapy is based on the belief that the creative process involved in making art is on a basic level healing and life-enhancing.
my own art/music practice has been greatly usefull in my coping with my illness and helping me to deal with understanding what Im experincing through creative expeession.

Chemotherapy - ABVD - day 10, the end of cycle 5



note:
this was my first treatment via the portacath I had inserted into my chest last week. Things went extreemly well this round.
All the anxiety of IV needles were gone going into the chemo and as a result things went much smoother then normal. Other then a little discomfort from the site of the port being a little bit sore still things went better then normal. The only thing that I need to watch for going forward is bloodclots with the port forming in the surrounding veins of the port but Im told this is a rare occurance and that its no more an issue then clots developing with IV chemo. So like a lot of this stuff its a wait and watch type of thing, some thing I have become very a custom to through this entire process. cant worry over some thing you cant control and as long as your aware and dont let things get out of control even if some thing that is a problem comes up as long as you take care of it quickly your generally ok. like any thing there are risks with any thing you do in life, you just weigh out the risks and for me this one is one is smaller then the greater one being treated.

surgery: portacath insertion





note:
today after many delays I finally got my portacath installed into my chest. The surgery was uneventfull and for the most part I was pretty much sedated to the point that I barely know what was going on or remember much.
a portacath is an implantable port device, which is positioned completely under the skin and inserted into the subclavian vein and avoid the need for repeated venepuncture or cannulation. it is used for certain patient, not all, who may require regular drug administration, such as chemotheraphy. the portacath is be inserted under general anaesthetic in an operating theatre. It reqiures a hospital of a few hours. the portacath is positioned in the chest. sometimes you can experience some initial discomfort around the insertion site but this should go after a few hours. the portacath can be used for chemotherapy administration, for taking blood and receiving hydration fluids. a portacath requires only one needle being inserted into the middle of the circumference of the portacath.

Chemotherapy - ABVD - day 9, the start of cycle 5



note:
this is my final IV treatment august 28th I get my port-a-cath inserted into my chest and will from that point forward have chemo via a port in my chest, which will be much easier on me and my veins which are now a mess. this photo represents the last time you will see chemo going into me via an IV.

visit to my oncologist/hematologist


visit to my oncologist/hematologist


note:
I havent really talked much about the sub-strain of hodgkin's lymphoma that I have, mostly because it sort of scares me to talk about but after a very positive vist with members of my oncology/hematology team I feel ok with talking about it: many of you know that I have a non classical form of Hodgkin's lymphoma called Nodular lymphocyte predominant (NLP) Hodgkin's lymphoma, is in a category of its own, outside of classical Hodgkin's lymphoma. this sub-strain tends to relapse more often then the classical types, which means its a chronic type that I have to live with for the rest of my life. Knowing this has made things very scary for me, as even though it is the most treatable sub-type of Hodgkin's the idea of relapse and having to go through other types of treatment or even worse a steam cell transplant, is extreemly scary for me and I have had many bouts of anxiety about it as a result. my sub-type of Hodgkin's is super rare and the data that is there is for stage I or II as unlike me most are caught at the early stages, where am stage III. since I was found at a later more progressed stage there is not as much data availalbe out there about my sub-type and my later stage of this kind of cancer. but at my last visit to the oncologist/hematologist we addressed this issue with me and this is what I got from them: they told me that not everyone relapses and when it does relapse it is treatable. that they have seen many people with nlp-hl that never had relapsed or are in remission for 10 plus years. they also told me the only time they would go the steam cell transplant route is if I relapse in a short time frame (1 to 2 years) other wise they would try some thing else dependent on how aggressive it is. that radiation and other chemos are all options and that there are new treatments comming out all the time. The doctor told me to sit back and take a deep breath that the whole team knows that I have had a rough ride with my cancer but to focus on the, good scans I got and that we are more then half way through now and that for them they are going for a full on cure for me because of the good responce to chemo I have had thus far. they send me for my next CT scans october 1st after that we will decide if we go for the full 8 cycles or end at 6 cycles. so things are looking very promissing for me going forward, even though my sub-type is chronic. Just thought I would share this information with you all, as I think i have finally come to terms that my condition will be with me in one way or another for the rest of my life.

Chemotherapy - ABVD - day 8, the end of cycle 4




note:
4 cycles down 4 more to go. due to a complication I was forced to postpone the surgery for my port-a-cath insertion. the surgery has been reschedualed for august 28th.

Chemotherapy - ABVD - day 7, the begining of cycle 4




note:
this chemo session went much better, my veins worked well and I was able to get my chemo with out much effort. I did however feel sicker then I normally do after chemo, but I think that was more a result of a few factors, the ct contrast dye still lingering around and 3 months of chemo drugs also lingering around in my system. But it was not terrable I took some extra anti-nausea pills and took an extra nap after I got home from chemo both helped a lot. next hurdel is my port-a-cath insertion a week from friday, hopefully no real complications from that procedure.

doctors visit mid treatment ct scan results




note:
good news, the sun was shining on me today, I got positive results for my 3 month CT scan - 50% plus shrinkage of my tumors, so the chemo is doing its job as it should be doing. I will continue on with 5 more months of ABVD chemo as its working better then expected.

er call back, 6 days later.




note:
this past thursday I was called back to the er, as they found a possible bacterial infection in my blood from the tests taken from my last er visit a week earlier.  the er doctors wanted to take more tests, to make sure Im ok and if needed give me some anti-biotics. so another 6 hours in the er, 14 more viles of of blood, a chest x-ray, and lots of temperature taking. still nothing, but my knee is feeling much better for now and a lot less swollen. the blood culture tests take a few days to come back, so far no word back from the er, no news is good news.

Chemotherapy - ABVD - day 6, the end of cycle 3




note:
today's chemo session was one of the most trying ones to date, 9 needle pokes later they finally were able to give me my chemo for this week. As a result it has been decided that I will need a port put in so far they have me booked in for august 3rd to have this done, it is a simple operation that takes no time at all. The port better know as a "Port-a-cath " is a generic term that describes any implantable venous access device. It is a common device used for people getting chemotherapy to have one inserted.  A small intravenous catheter  several millimeters in diameter and 20 - 25 centimeters in length is inserted into a large vein behind the clavicle.  The catheter is connected to a "port" which is about the diameter of a 25 cent coin.  The port is then placed underneath the skin of the chest where it can be easily felt and "accessed" by a nurse.  Administration of an intravenous medication or collection of a  blood sample is both simplified and made much less uncomfortable for you when a port-a-cath is available. Once placed it is recommend that a port-a-cath not be removed until the likelihood of a recurrence of the cancer is minimal.

bi-weekly trip to my hemotologist-oncologist's office





note:
I have been set up for my mid treatment re-staging ct scan appointment for july 19th. what does this mean? It means that I will soon find out if the chemo regime I have been put on is doing its job. this scan will dictate, if my treatment remains the same or not and give us a better idea of the length of my treatment and if I will also need radiation to compliment the chemo.

a friday night trip to the ER.



note:
on friday night after watching my leg swell up and down for about a week, I took the advice of  a friend and went to the er. that day my leg swelled up to about double its normal size. the er doctor thought I might have had an infection, a blood clot or gout  (who knew at 39 you could get gout but as it turns out any thing is possible when your getting chemo) so 9pm turned very fast into 5am in the er (as it normally does). many viles of blood later (11 in total), some x rays, an ultrasound and a needle stuck into my knee and they found nothing. I was then sent home, told to stay off my knee for a while take some advil and to tell my hematologist-oncologist about this on monday. at least I'm infection and blood clot free which was the main concern, as for gout well....

Chemotherapy - ABVD - day 5, the start of cycle 3




note:
iv pumps regulate the infusion of the chemotherapy drugs into me, this week I had some problems with my veins and had to have my iv changed to a new vein about 3/4s through being given all 4 of the drugs I get. But its nothing to worry about I was told this sort of thing happens often, I mean after all these are harsh drugs and our veins are not really meant for such harsh drugs to be put into them. they were forced to slow the pumps down this week for the D drug from a 1 hour infusion to a 2 hour one as to avoid a similar issue with the new veins they used after the first vein stoped co-operating.

note:
all this time I have been so concerned with showing you my birds eye view of my experience I have totally forgotten about the main subject of this essay. Im sure many of you have been wondering how Im doing physically how Im holding up through this.
I decided to take a photo of myself today to show you, that so far so good, sure Im minus some hair but since I already didn't have much hair to begin with its not a huge change.
This picture was taken one day before I begin my 3rd cycle of chemotherapy, which means my 5th of 16 sessions of chemo.
my last visit to the hematologist was a positive one, it looks like Im responding positively to the treatment, no major issues or at least nothing that cant be dealt with using medications. I will every so often post more photos of myself so you can see how Im doing and you can get a rest from the voyeur view point of my other photos.  

Chemotherapy - ABVD - day 4, the end of cycle 2

Chemotherapy - ABVD - day 3, the start of cycle 2

another visit to my oncologist for a pre-chemo check up, all is looking good.

post chemo meds

Chemotherapy - ABVD - day 2




note:
Cycle 1 compleated, 7 more cycles to go.
Chemotherapy is not usually a single treatment, but a course of treatments. A course usually takes between 3 to 6 months, but can be more or less than that (in my case its 6 to 8 months) During that time, I will would have between 6 to 8 cycles of treatment. A cycle includes the time when I have my chemotherapy treatment and then a break before the next treatment, to allow my body to recover. In my case its every 2 weeks. Depending on the drug or combination of drugs, each treatment lasts from a few hours to a few days, in my case there there is one day in the hosptial for IV drugs and 2 days post IV drugs taken orally.

another visit to the doctors



note:
no news is good news.

Chemotherapy - ABVD - day 1





note:
Chemotherapy is the use of chemical substances to treat disease. In its modern-day use, it refers primarily to cytotoxic drugs used to treat cancer. The protocol I get is ABVD and is the standard treatment for most types of Hodgkin's Lymphoma.

bone marrow aspiration and a bone marrow trephine biopsy





note:
There are two main types of bone marrow test - a bone marrow aspiration and a bone marrow trephine biopsy. Aspiration means the doctor sucks some bone marrow cells up into a syringe. A bone marrow trephine means that the doctor removes a 1 or 2cm core of bone marrow in one piece. Both were performed on me today, better safe then sorry.

where I go for treatment

where I go for tests

nuclear

more tests

staging visit (IIIb) - speechless




please note update:
On April 16th I was further diagnosed with stage III Nodular lymphocyte-predominant Hodgkin's lymphoma, with tumours on my left neck and spleen and retroperitoneal lymph node involvement. I am still going through some further testing to complete the staging process. I will begin chemotherapy on May 2nd. Because of my cancer's advanced stage, I will require potentially 8 months of treatment. I am currently under care at Princess Margaret Hospital.

one of many hospital visits

ct scan

premedication for CT scans