The Hardest Blog

November 22 - Day 35 + 7

This news is actually from November 15, but I have found it very difficult to break the news. Please accept my apologies for the delay.

On Nov. 13, I had a bone marrow biopsy to determine the results of this round of chemo. On the 15th, I was informed that the results were not good. I am not in remission, so I cannot go forward with a bone marrow transplant.

In fact, there are no viable treatment options left, other than experimental ones which have a very low success rate. So the bottom line is I came home as soon as possible (19th) and I'm on essentially palliative care, which means blood transfusions once or twice a week. This gives me a life expectancy of three months or so.

Thank you to everyone. You've been such a support over the last several months in person and on this blog.

Monitoring and Reacting

November 5 - Day 25

The last ten days have been spent getting rescanned (CT Scan and Chest X-Ray for pneumonia), and monitoring blood levels and topping up where required. In total I got 5 units of platelets and 4 units of red blood cells.

I also got a new PIC line inserted to replace the old Hickman.

The other issue is fevers once or twice a day, treated with tylenol. I literally sweat the fevers out over a few hours.

From today forward, my blood counts should be starting to rise, and with white cells, little irritations like mouth sores as well as larger ones like chest lesions should start clearing up as well.

Post-Chemo

October 26 - Day 15

Last Saturday and Sunday, days 9 and 10, I got the final chemo drug, called Cytarabine. I got the same drug in the first induction, but this time it was given as a 3 hour IV drip, twice a day. Unfortunately, the earliest time to start is about noon, so the second dose was from midnight to 3 am. Not conducive to sleep.

A few hours later on Monday morning, I was feeling pretty bad. I had a high temperature, 39.5, and very low blood pressure - as low as 80/46. They jumped on this with antibiotics and tylenol, as well as red blood cells. (I actually got red blood cells the day before as well, because my hemoglobin count was low.) After a few hours they escalated this to the rapid response team, who determined from blood cultures that I had an infection, probably from my Hickman line which has been in for 6 months. So that was removed, and I was moved up to the ICU.

They determined the family of bacterial infection quickly, and I was already on the right antibiotics for that anyway, so I recovered quickly in the ICU and was back in my normal room the next day. I also continued to get red blood cells for a couple more days. The only problem was they needed to monitor my 'liquid output' to compare against the amount of fluid they were pumping into me, so I had to be catheterized.

The next couple of days were a lot better. My cough is getting worse though, which is affecting my sleep as well as everyone around me, and I'm having occasional low grade fevers. So today, after getting platelets, I had a CT scan.

Up to now, close to half way through this induction therapy, I'd say I'm doing better than the first one. Then I had a pretty fast, deep and prolonged decline, with slow response. This time, the decline was faster, but was handled much quicker and I got back to near normal in a day. Of course, there are still another ten days or so before my cell counts should all be climbing, so bad things can still happen.

Mid-Chemo

October 20 - Day 9

For five days, Monday through Friday, days 4 to 8, I had two different medications for chemo.

The first is called Mitoxantrone (pictured below), and is given by injection over a few minutes. It's dark blue, to complement the red Daunorubicin I got in the first induction. I believe the two drugs are in the same family. All I need now is something green to get on the RGB charts!

The second drug is called Etoposide (pictured here) and is given as an IV drip over an hour or so.

I have also been on an IV antibiotic four times a day, which ended Thursday night (actually 4 am). Stopping this makes sleeping easier of course, though that's never great in the hospital.

The next two days (Saturday and Sunday, days 9 and 10), I'll be getting a different chemo drug, called Cytarabine. I got the same drug in the first induction, but this time it's given differently. More on that later.

Hospital First Days

October 11 - Day 0

Went to the hospital Thursday p.m. for an ultrasound on my butt abcess. Turns out it's not too deep, and could be treated with antibiotics or possible minor surgery. While we were at the hospital, the hospital called us at home to say a bed was available. Of course we missed this call, and got a seccond call around 6:30. After dinner we went to check in. Got a private room at least (for now anyway.) Got some bloodwork, but no IV, so sleep was possible.

October 12 - Day 1

Saw DRAP and the pharmacist. Had at least 8 people look at my butt. Surgeons concluded it is draining itself (very slowly) and that they would not open it up more. On antibiotics - drip 4 times daily for 30-45 minutes, then disconnected from IV for the rest of the time. Decided to delay chemo until Monday to give the butt thing a chance to improve first. In the evening also saw DRRB.

October 13 - Day 2

Just more of the same. Antibiotics 4 times, a few visitors.

October 14 - Day 3

Same again. Chemo should start tomorrow.

Bone Marrorw Biopsy and Results

October 11

Ater three cycles of Vidaza, it was time to check on my progress. So on Tuesday, I had a bone marrow biopsy (5th one to date.) Sometimes they'll wait until after six cycles, but since a bone marrow donor has been found it was worth checking early.

And it's a good thing they did it now. Because, unfortuantely, it seems that the treatments have been totally ineffective, and that I have relapsed into a much worse state.

So now I have to go back into the hospital for another round of induction therapy (7 days of treatment, followed by two or three weeks of recovery). The drugs will be different from the first time, but I expect that it'll be very hard, like the first time.

This will most likely start today or tomorrow.

After Chemo Cycle Three

September 20

I got through the third cycle of chemotherapy, finishing on Tuesday (18th). This cycle seemed to go a bit better. I was feeling not too bad over the weekend after the first five treatments, but worse agan on Monday and Tuesday as the last two treatments were administered. Anyway, I seem to be improving a bit now.

I still have a number of side issues though. For now, the worst is mouth sores. They have been quite bad, to the point where I could only eat liquids for several days. This included blending of semi-solid foods to a mush. I've been seeing a dental pathologist about this, and it's getting better now, though it's still a problem. My other problem is in the lower G-I, and I don't think more detail is warranted here, other than to say that a side effect of this is difficulty sitting down for any length of time.

Next up is a consultation wth my doctor on October 5th, followed by a bone marrow biopsy on the 9th. This will tell us how effective the chemo has been. After that, we'll have a better idea of whether to continue on this chemo for a few more months, or do something else, before getting to the bone marrow transplant.

After Chemo Cycle Two

August 31

This has been a rough month. After the first month, I started feeling better when the seven days of chemo ended and was not too bad by the time cycle two started. This month was not like that at all. At the end of the chemo days, I was feeling worse and worse - major fatigue, along with mouth sores, some head aches, etc. It turned out that my haemoglobin was so low. Normal haemoglobin is 130 or higher, and for anemia, it's usual to get blood transfusions when your level dips below 80 or 90. In my case, it was at 60. So I had two units of whole blood last week, which raised the level to the mid 70s. This week I had two more units, so I should be slightly more energetic. In fact, though I feel a bit better mentally, I'm still pretty tired physically, thoughnot as bad as beofre the transfusions.

I also saw my doctor this week, and we've decided to postpone cycle three by a week to give me a bit more recovery time. It was supposed to start after Labour Day, but will now start the following Monday. Four weeks after that, I'll have another bone marrow biopsy to determine the progress of the chemo, and then we'll determine next courses of action - more cycles of same chemo, or something else. It looks like the bone marrow transplant is still several months away.

Chemo Cycle Two

August 11

I'm mid-way through the second round of out-patient chemo. I had four days this week (Tuesday through Friday, as Monday was a holiday), and I have three more days next week, Monday through Wednesday. Then I'm off until after Labour Day.

As before, it's stomach injections of Vidaza (brand name; the 'real' name is Azicitidine), with two each day. Side effects are incredible fatigue, major muscle aches, mouth sores, skin irritation and redness, etc. Not very pleasant to be sure, but still better than being in hospital.

When I met with my doctor last month she confirmed the donor match, but said she wants to complete at least three rounds of the chemo (i.e. last month, this month, and September) before checking status. Then we'll get yet another bone marrow biopsy to determine the state of the cells. If progress is being made, another three to six months of chemo will be done until I'm ready for the transplant. If little progress has been made, then another plan will be required.

Donor Found!

July 26

I've just received word from my doctor that a matching bone marrow donor has been found! Woo Hoo!

I don't have any information about the person, whether they're from Canada or elsewhere, etc. But I do know that they don't inform recipients of a match until they've done additional screening for more matching factors, screened for donor health issues, and got an Intent to Donate signature from the prospective donor. So the fact that this has happened in three months is pretty good.

The transplant wont happen for a few months though. I need to have my blast cells at a lower level, and that will require more cycles of my current treatment. In fact, we don't yet know how effective this treatment is since I haven't had any blood tests since - I'm going tomorrow to fix that.

Chemo Cycle

July 19

It's been awhile since my last entry, so I'll try to catch up with what's been happening.

As I said last time, the treatment plan was changed after it was found that the original treatments were not very effective. So the new plan involves monthly cycles of a different drug, called azicitidine. I get this every work day for seven consecutive days (i.e. Monday through Friday, plus the following Monday and Tuesday). The drug is injected subcutaneously in the stomach rather than intravenously. There are two needles per dose, since the total volume is too much for a single shot. (Some people need three, apparently.) So in effect I get 14 shots in the stomach every month.

Although the actual shots take just a few minutes, I need to spend a couple of hours every day in the cancer treatment centre. On the first day of the cycle, I need to have blood taken and analyzed. This takes an hour or so (the analysis, not the withdrawal), after which I get 'assessed' by an intake nurse. Assessment is just a weigh-in and measure of height (which apparently doesn't change much month to month - the height I mean, obviously weight is more variable) and a quick interview on how I'm feeling. After this point the drug gets ordered from the pharmacy, and that takes another hour or so. The good thing is the drug has a short shelf life (something under one hour) so by the time it comes they take me straight away. On subsequent days, though there is no blood requirement, there is a very quick assessment before the drug is ordered, followed by an hour to hour-and-a-half wait for the drug to be ready. So a big chunk of the day is taken up in order to get a few minutes of treatment.

Side effects of the drug are redness and soreness at the injection site (they change sides every day to spread this around), as well as flu-like muscle aches, head ache, fatigue, cramps and 'digestive' issues. The aches were worst for the first couple of days, but the fatigue and the digestive issues persist throughout the treatment cycle and beyond.

I have another CT scan scheduled for later this week to see if my chest infection from the early days in the hospital has gone away, and then I have a couple of weeks respite from treatment until the cycle starts up again in August.

Remission Rethink

June 29

After the last bone marrow biopsy on Monday, it appears that the earlier diagnosis of remission was incorrect. Apparently, the blast cells are at 14%, little reduced from before the induction chemotherapy. The earlier reading (just before I left the hospital at the end of May) could have been wrong either because of the lack of aspirate to analyze, or because the blast cells were only temporarily supressed.

Repeat of the inducation chemotherapy does not seem to be a viable option, as it would require a higher dose, be harder on me, and have a low chance of success.

So, a new course of action is happening. This is the protocol that is usually used first for older MDS patients, which is the monthly cycle of azacitidine treatments. This differs from the consolidation chemotherapy that I was set to have in that it is a different drug and requires subcutaneous injections for 7 consecutive days in a month (with weekend off, so actually 7 of 9 - bring on the ST:V jokes), followed by 21 days off. The other difference is that this treatment can continue for an indefinite number of months until a transplant is available, whereas the consolidation chemotherapy could only be done twice.

The outcome of this treatment has a relatively low (about 20%) chance of bringing on full remission, but a very good chance of improving the situation somewhat, or at least remaining stable for many months without getting worse. As I am still pretty healthy on a macro-scale, this should be good enough for the time being.

Chemo No Go

June 25

I was supposed to start the next round of chemotherapy today. It's called 'consolidation', as it is meant to maintain the levels that we got to after the major chemo (called 'induction') that we did all through the month of May in the hospital. However, as my white blood cell counts, and particualr my neutrophils, are still very low, at the last minute they decided to postpone the chemo, and do another bone marrow biopsy instead.

The bone marrow biopsy went fine, as they were only going for the aspirate - the fluid part containing the developing blood cells. We had to wait a couple of hours though, as it was not originally scheduled and we had to wait until all the other procedures were finished.

Unfortunatley, this will probably push the chemo out by a couple of weeks. We need six consecutive days for the consolidation chemo, so it has to start on a Monday and end on Saturday with in-home care to disconnect the chemo pump. But next Monday is a holiday (for the non-canucks it's Canada Day) so it seems we wont be starting until July 9th. If only the bone marrow biopsy could have been done last week... Oh well. We takes it as it comes.

Status Update

June 17

Today is, according to Google, Father's Day. Kids are planning something, but so far it includes sleeping in. (For them, not me.)

As far as status goes, there is very little new at the moment, with things to come in the next little while. Last week I went in to give blood samples and have my line flushed and cleared. I also had a chest CT scan to see if the minor infection in my chest has cleared up. (No results on this yet.)

Next week I have a consult with the hematologists, and the following week I have out-patient chemotherapy scheduled for five days - Monday through Friday. I had understood it was two or three days at a time, so I'm not sure how this is going to work exactly. I'll discuss with the hematologists next week to get a clearer picture. More generally, I'm still eating well and getting more energy, though stamina seems to be more elusive.

Update: Kids actually acquitted themselves nicely. When they did complete the sleeping-in, they made me breakfast (not in bed), and we had a nice day together. We finished with ordering a meal from a favourite restaurant, and they lavished me with books and DVDs. Highly acceptable.

ReMission - Possible!

June 7

Yesterday I saw my doctors for the first follow-up since leaving hospital. It turns out I'm semi-officially in remission! (According to Martha, 'It's a good thing!')

It's semi-official because remission requires two criteria: 1) Blast cells (the bad guys) have to be below 5%, and mine are at 3%, down from 20% before I started treatment, and 2) Neutrophil count (type of white blood cell) should be over 1.0. My neutrophils are still at 0.5 but creeping up slowly.

The upshot of this is I now move on to phase 2 of the treatmnent, which is called Consolidation Chemotherapy. This involves outpatient chemotherapy a few days a month, and will continue for several months to keep the blasts in check. The alternative would have been to start over at the beginning with another round of 30 days in hospital, which I was very much looking forward to never ever doing again. Fished my wish!

Diversion

June 5

Totally off topic, but on the weekend KID1 and I made an adapter to convert an old solar filter I had for a four inch telescope to fit on my current ten inch. It was based on the 'make your own solar filter' web site of the San Francisco Sidewalk Astronomers, but instead of the sheet of solar filter I had a whole cartridge. It is essentially filter material surrounded by a plastic base (in effect a replacement for the lens cap on the four inch). So we made a heavy cardboard and duct-tape adapter that work perfectly on the ten inch.

Then Tuesday was the Transit of Venus, and here are a couple of pictures we got of it. They're not very sharp, but you get the idea. First picture is just around second contact, but it is not clear enough to show the 'black drop' effect (Venus at around 5 o'clock). Second picture is maybe 30 minutes later (Venus at 6 o'clock).

Note for the previous transit in 2004, I used this same solar filter taped to a box, with binoculars taped to the other side. It was quite portable, but kind of unsteady, and certainly wouldn't have worked for pictures.

Survey - Your Opinions (May) Matter

June 5

A huge dilemma is brewing, and your comments/opinions on the matter would be appreciated. (NOTE: for the purposes of this post please stick to the topic and refrain from sarcastic and/or humorous posts. You may resume that later.)

The problem (for which the CMC really couldn't give a toss, but certain females are more interested in) is the hair situation. The question is:
A) Should I leave the current Yoda-look alone and wait for the rest of the hair to comeback and catch up, or
B) Should I shave it (i.e. have it shaved - I'm not doing it!) and get a 'fresh start'? or
C) Make some kind of 'do' out of what I have (joking on this one)

Please add your comments on the matter, and for statistical purposes it might be interesting if you identify your gender (F or M for those new to this concept).

Disclaimer: Your opinions (like many of my own) may not matter, as the aformentioned females often get their way in these situations. Nevertheless, it will be interesting to see the variety of opinions.

Hanging Out and Hanging In

June 5

(Notice I didn't say 'Day 42'? That's because I'm not in the dreaded hospital, so I don't have to count my days!)

Sorry, it's been a few days. I've been adjusting to the luxury of being home.

Things are much better here. I don't need to be constantly poked and prodded, I'm on my own time, I can relax in the Comfy Chair or even get up and do a few things. I'm eating well, slowly getting back my energy and trying to build back my strength. It'll take a while I guess, but I can't say how much happier I am at home. I've even been out a couple of times - once to KID2's soccer game, where I could watch from the car, and once to the hospital to get blood taken and have my line flushed and redressed.

There's No Place Like Home

May 29 - Day 34

Tap your heels together three times ... and say "There's No Place Like Home".

And magically, I am now home! It was touch and go for a bit today as the various groups of doctors debated on whether I could go. Hematology/Oncology did the bone marrow biopsy on Monday, and they were all set to release me today. But the Infectious Diseases doctors were not aware of this, and had me still on IV antibiotics and anti-fungals. Eventually, though, thy took me off IV and gave me prescriptions for oral substitutes. (Turns out the anti-fungal is very expensive, so we'll get a small amount and look for alternatives.) And yesterday they wanted to put me back on IV - but it turned out it was a one-time thing since they already had it made up.

The new Comfy Chair (highly deseving of capitals) arrived on Monday, and Cardinal Biggles was filled with fear and surprise, but not so much ruthless efficiency.

Finally, I did a weigh in and found I have lost 31 lbs. I am basically a stick insect with absolutly no muscle tone, energy or stamina. On the plus side, I expect to be eating vast quantities to try to rebound.

Bone Marrow Biopsy

May 28 - Day 33

Today I had another bone marrow biopsy. It was done at my hospital bed, and was somewhat less painful then the previous two go-arounds. It was done by DRLC, and apparently more freezing was used so that discomfort was kept to a minimum. A decent biopsy sample was obtained, but the aspirate sample (the fluid around the marrow) was difficult to get as is often the case after chemo. It'll take several days to analyze he results of the biopsy, but this is the last step keeping me in the hospital.

No Matches

May 27 - Day 32

I meant to report his earlier, but I had all that catching up to do. Anyway, it turns out (found out about 5 days ago) that none of the SIBs is a suitable bone-marrow match for me, despite the overall odds having been in my favour. Statistics - thou art a heartless bitch. So I am left with the unrelated donor registry. While I am happy for the SIBs not having to go through with the donation procedure, I am now left with perhaps several months finding a match (and then hoping the random anonymous match is happy to go through with the donation procedure!)

The Lost Days

Day 9 through 30

I'm writing here on Day 30 (May 25) about all that has happened over the past 20 days. First, though I was told that things would get worse around day 9 or 10, I was totally unprepared for this. It was a complete Gob-Smack, two-by-four to the head type experience. It's still somewhat of a blur, but I'll try to recall it based on notes I've kept.

May 4 - Day 9

I was feeling pretty good on day 8 as the chemo was finishing. I was even free of the IV for a few hours, like a normal person. But the next day I started to get very tired. My cell counts had dropped to rock bottom - platelets at four (normally 150-400), white count essentially zero (normally over 4). All expected though.

May 5 - Day 10

Day 10 was about the worst. Started at about 5 am when I woke up on the washroom floor. I had fainted, fortunately I'm about three inches taller than the WR was long so my head and feet wedged against opposite walls instead of smashing on the floor. I fainted twice more that day, including during a chest xray - never felt dizzy, just was concious followed by not so much. Also this day the doctors noticed rash / spots on my face and thought I might have shingles. Just what I need. Experts were brought in and decided it was just some minor rash, pimple-type thing. One in the plus column anyway. Also received platelets today. And another fun thing - started getting diarrhea about every 2 hours. This will continue for about two weeks.

May 6 - Day 11

Correction - day 11 was about the worst. I stared to get hiccups. Now, the way I fugre it there are two kinds of hiccups. Mild ones you get, maybe after eating, that are random and fairly spread out and go away after a few minutes. Then there are the more serious ones that are stronger and more frequent and tend to last longer. I started with these, but they were pretty bad in that they were happening every 5 or 6 seconds, and sometimes would overlap. Absolutley no chance to relax or calm down here. And guess what? I now discovered there is a THIRD type of Hiccup. These are completely coordinated in a band across your chest, happen every 2 to 3 secconds, overlap each other, and are quite painful. I counted 167 of these in ten minutes, which works out to 1000/hour. Therefore they shall forevermore be known as Khiccups. Eventually I got a pill that lowered the khics to hics, and eventually stopped them. But I never want to experience that again.

May 7 - Day 12

Not much today. Got platelets, had a CT scan, ate nothing.

May 8 - Day 13

Received red blood cells today. This makes me an official vampire. By my rules, if you have both given blood and received blood, you're a vampire. No need to kill, bite necks, dance under a full moon, etc. As I mentioned in another post, Al Lewis is the best role model here - forget about Depp, Pitt, Pattenson, etc.

May 9-11 - Day 14-16

Feeeling generally lowsy. Weak and uninterested in anything. Just lying about. Low in several fluids (potassium, phosphates, magnesium, etc.) so on all kinds of IVs. More input equals more output of course. Started to notice significant hair loss around day 16.

May 12 - Day 17

Chest Xray, CT Scan, Cough started.

May 13 - Day 18

Cough gets worse, fevers. Lots of IVs, tylenol.

May 14 - Day 19

Weight own 14 lbs. Another CT scan. As dinner arrives, I'm taken off all food and liquids by mouth. Can't stand not being able to drink. Must also measure all 'outputs'. Covenient and fun! (see last bit of day 10.)

May 15 - Day 20

Awful day. Had the hiccups all night. (Not the khics, a least.) Took hiccup pill but it worked only for an hour or so then they came back. Also, haemoglobin was low, so a red cell transfusion was required. Because many other fluid levels were also low, I was moved to the Intensive Care Unit, room D438. Here the nurses only have two patients, so you get very good attention. Unfortunately you are permanently hooked up to so many monitors that you ae completely bedridden. Tht means bedpans. And if you remember what I said on day 10, this was not a pleasant experience.

May 16 - Day 21

I'm now allowed clear fluids, but I haven't eaten (or drank) anything in two days. I get a fever later in the day and take some tylenol to lower it.

May 17 - Day 22

Another fever in the morning, and tylenol. Ultrasound of my liver mid day. More fever and tylenol in the evening. Also low on phosphates, so more IVs.

May 18 - Day 23

Moved back to C2 unit, room 32, to an isolation room. This is a normal room (single!) and is much more convenient since I can plug my IV pump into the washroom plug and move from bed to washroom without unplugging anything. Just having access to a washroom after the ICU is amazing. Diarrhea is diminishing greatly now, to about half waht it was. In the next few dys it'll go to very infrequent, and completely managable.

May 19 - Day 24

Uneventful. No fevers, just normal IVs and getting along. Starting to feel pretty normal.

May 20 - Day 25

Blood transfusion due to low haemoglobin levels.

May 21 - Day 26

Moved from isolation into normal room C246. My old roommate Dave is here. Get cough medicine a couple of times, and normal IVs (antibiotics, various fluids), but feeling pretty good, though tired.

May 22-24 - Day 27-29

More of same. Feeling well - ready to go home when they let me. Just on fluids and antibiotics. Somehwat tired, but much more alert and energetic than before. Really just hanging about. Had CT scan on the 23rd.

May 25 - Day 30

Needed red blood cells today. Otherwise we are waiting for white cell counts to rise and for a bone marrow biopsy on Monday (28th).

More from WIF - Day 24

First of all, we’d like to thank all of you for your phone calls, cards, e-mails, texts, blog responses, flowers and food.  We are humbled.  We are blessed.  We are never going to have to cook again.    

May 19, 2012

Canmancan is still fighting but it’s been grueling.  He insists that he will be updating his blog soon, but this is much more exhausting even than anticipated.  The previous three days have been spent in Intensive Care, (apparently he’ll do anything for a private room) but now he’s back on the regular cancer ward.  Captain Stubborn will be updating you at some point in the future with as many gory details as he can remember, but for now we’re keeping our fingers crossed.

Quick Note from CMC (in person!) on Day 13

May 8, 2012

Sorry I haven't been able to keep in touch but the internet has been spotty here recently.

I have been keeping notes and will fill in the details in the next few days. Today, though, I received my first blood transfusion. It was the Red. My hemoglobin had dropped below the threshold that requires it, so that's how it goes. So know I may officially declare myself a vampire. (According to my established canon, if you both given and received blood your in. No dying or biting stuff.)

I realize that many of our lady followers might immediately think of Brad Pitt, Tom Cruise, or Robert Pattinson, but I'd suggest a better image might be Al Lewis.

An Update from WIF - Day 10

This is the voice of WIF again, and we are now one third of the way through this initial process, the 30-day hospital stay.

Also, a shout out to Scotland – “Hi Scotland and thank-you!!”  

May 5, 2012

Canmancan started the day in an inauspicious way, waking up on the bathroom floor at 5:30 a.m., his undignified posture due to the fact that he had fainted on the toilet and fallen off.  Not content with that, a few hours later C-man was sitting on the side of the bed, where someone was waiting to help him to the bathroom, and fainted again, fortunately falling backwards onto the bed this time.  They called a “code blue” (cardiac arrest) and then cancelled it when they realized he was okayish.  Not content with this level of attention either, C-man fainted yet a third time, while sitting up in his bed for a chest x-ray.  Enough already!  Stop being such a diva!

The night had been better because loud-speaking-in-tongues had been sedated for part of it, so C-man was much more alert today.  Fever still up and diarrhea had started, so we’re in partial isolation, and everyone has to be gowned and gloved to be in his cubicle.  His blood pressure was way down (hence the fainting) and he was forbidden to get out of bed.  Got both oral and IV potassium, and two rounds of broad-spectrum antibiotics.  The Hickman line is wonderful – all the inputs and outputs go through that.  When his doctor visited she saw the rash on his face and suspected Shingles.  Oh good, we need that.  However, the infectious disease specialist who visited later thought it was just a heat rash, and not Shingles, so better news.  Blood pressure is improving.

C-man has been wearing his own clothes and looking quite beachy in shorts and casual shirts, but the last few days it’s been those attractive hospital nightgowns all the way.  I think looking at them makes you feel sicker.  He’s also attired in attractive anti-embolism hose, which only serves to reinforce our total lack of interest in cross-dressing.

His platelet count is very low.  As in four (4) (IV) (quatre).  Normally it should be between 150 and 450, so C-man is a clear underachiever.   He received a platelet transfusion, which seemed to stop him from peeing blood.  Did I mention that?

A brief digression now.  I am so proud to live in a country where our blood products are not paid for, but come from the kindness of strangers.  And I’m fiercely proud that C-man himself has been one of those kind strangers over 50 times - something you’ll probably never hear from him.  A scant three months after trying to donate platelets and finding the problem with his counts, he’s found himself on the flip side of that particular coin. 

End of digression.  Surprisingly, after letting us plummet all day, the roller coaster ride improved in the evening, and when I called C-man was listening to music (first time in 2 days) and reading a book (first time in 3 or 4 days).  Time to take a derivative and see if we’ve reached the minimum for this particular parabola.

An Update from WIF - Day 9

This is the voice of WIF. Canmancan is holding his own, but very, very tired at this point. I’ll leave all the humour, irony, sarcasm, satire and esoteric references where they belong (with him) and just tell it like it is.  

May 3, 2012

Day 8 (Thursday) started out well, with the unhooking of the IV at about 10:50 a.m. and the freedom of a shower without an IV pole. Appetite was down a bit and tiredness was up, though. Lousy news in the evening – running a low grade fever of 37.5, which may indicate an infection.  

May 4, 2012

Day 9 (Friday) was worse – no appetite and no energy whatsoever. Visitors have been banished (although I negotiated a lunch time visit for myself every day). Phone calls have been discontinued, too (except one dinner time call to get updates). C-man is too tired to talk, to read, to eat, to post, or to do just about anything. The good news is that his fever hasn’t gone up any more, so at this point there are no antibiotics and no blood transfusions. His roommate argues all night with his personal care worker, shouting and swearing in a variety of languages, all of them loud. He also used C-man’s specially-purchased-for-the-hospital crocs last night. Eeewww. Is nothing sacred? One of them needs a sleeping pill.

Chemo Almost Done, Day 7

May 2, 2012

Down to the last few hours. At this time (about 20:45) the reading on the pump says 8.1ml. At 0.6ml per hour, it should be done in under 14 hours.

While waiting for that to happen, a more minor milestone was passed today - I've been here or over a week. I don't think I have ever been inside a single building for a week before without going outside.

WIF and KID1 came around noon, MOM this afternoon, and RELDS and RELMP both came this evening.

Food and Media - Day 7

May 2, 2012

Food

Breakfast: Scrambled egg, toast, peanut butter, jam, corn flakes, milk, orange juice, tea

Lunch: Cream of brocolli and cheese soup, tuna salad sandwich, banana, tea - WIF brought meatloaf sandwiches from FRDRW

Dinner: Breaded chicken stuffed with brocolli, mixed vegetables, jello, apple, apple juice, tea

Media

Books: Skippy Dies, Paul Murray (started)

DVDs:

Music:

Television:

Chemo Continued, Day 6

May 1, 2012

Near the end of chemo. Getting tired of it. Wanting it to be over. But still a couple of days to go.

I was moved to a different room tody. I had been a double, at the door side, though I would have preferred the window. Now I have a window, but it's a triple. My second roommate left for home today and they needed the room for some women, so I got bumped.

SIB2 and whole family, and WIF & KID1 came this evening. (WIF this morning too, of course.) WIF and KID1 had to leave soon, though, as KID2 was arrving home earlier than expected from school trip.

Food and Media - Day 6

May 1, 2012

Food

Breakfast: Pancakes(2), scrambled egg, toast, syrup, peanut butter, rice crispies, milk, apple juice, tea

Lunch: Chicken noodle soup, cheese sandwich, pineapple, tea

Dinner: Chicken A La King, Italian mixed vegetables, rice, mandarin oranges, apple, orange juice, tea

Media

Books: Magazines

DVDs:

Music: Random

Television:

Chemo Continued, Day 5

April 30, 2012

Today I really don't have much to say, so I'm going to say it.

Not much.

This is the boring period, while I still feel ok, but the chemo is continuing for a few more days. Then it'll get worse. Then it'll get better. DRRB visited today and said everything is tracking normally. My counts are down as they should be, but still have some way to go.

I slept reasonably well sleep last night. My hope for a room to myself was dashed at about 10:00pm when they brought in a new patient, but he was quiet and I managed to get some rest. I had some more today, as I took down time to just lie about listening to music.

WIF came this morning, MOM this afternoon, and SIB1 this evening. I also got calls and emails from a few people, including some pics of balloons from WRK.

Food and Media - Day 5

April 30, 2012

Food

Breakfast: Scrambled egg(1), toast(1), peanut butter, jam, bran flakes(1), milk, tea

Lunch: Tomato ravioli soup, chicken salad sandwich, pears, tea - WIF brought meatloaf sandwich from Pusateris via FRDGG

Dinner: Chicken pasta primavera, brocolli, french fries, grape juice, fruit cream cookies, tea

Media

Books:

DVDs:

Music: Bach, Brandeburg Concerti

Television: Once Upon a Time s1e20, Amazing Race s20e10

Chemo Continued, But Less - Day 4

April 29, 2012

No more Daunorubicin, but I'm now just halfway through the Cytarabine. When thy told it me was just in a little pouch that I could carry around, I thought that's good. But they negelected to tell me that I'd also be on continuous IV of saline to help flush all the bad stuff (medical term) from my system, so I'd be attached to a IV pole the whole time. All that liquid also means frequent ... well You're In Nation of trouble if you don't know what.

I had a poor sleep last night as my room mate was having difficulties. Unfortunately he's been moved to an isolation room, so for the moment at least I've got the room to myself. I've tried to take advantage by having quiet tme.

SIB3 and the Mr. came by this afternoon, and later MOM is planning to show up.

Food and Media - Day 4

April 29, 2012

Food

Breakfast: French toast (1), scrambled egg (1), toast (1), peanut butter, jam, bran flakes (1), milk, orange juice, tea

Lunch: Cream of potato and chive soup, turkey sandwich, rice pudding, tea

Dinner: Pork chop, mashed potato, gravy, mixed garden vegetables, jello, apple juice

Media

Books: Scientific American (mag)

DVDs:

Music: Chicago (band, not musical)

Television: Fringe s4ep19

Chemo Continued - Day 3

April 28, 2012

Not much happened today again. (I note I said this yesterday and then went on for quite awhile). I got my third and last shot of Daunorubicin at about 12:15 (pm). Cytarabine is still trucking.

I'm a little bit tired today, but no more than a usual Saturday when I'd try to sneak in a nap when no-one is looking.

WIF and KID1 visited today around lunch time. Later, RELDS and RELLT came by and brought edibles from themselves and from FRDDD.

Food and Media - Day 3

April 28, 2012

Food

Breakfast: Toast (2 pc), peanut butter (2), jam, scrambed eggs (2), corn flakes (2), milk (2), apple juice, uncoffee

Lunch: Chicken noodle soup, egg salad sandwich, mandarin oranges

Dinner: Meat pie, mashed potatro, corn banana, grape juice, uncoffee

Media

Books: The Lost Gate, Orson Scott Card (finished)

DVDs: Yes, Minister (s1e2, s1e3)

Music: Fleetwood Mac, James Galway

Television: Big Bang Theory (current episode)

Chemo Continued - Day 2

April 27, 2012

Not much happened today. I got my second shot of Daunorubicin at about 2:15 (pm). Last one comes tomorrow. And the Cytarabine just keeps on pumping, as it will for a total of seven days. It's very low flow though - only 100ml total, or about 0.6ml/hr. (Work it out - 7 days = 168 hours * 0.6 ml/hr = 100.8ml). By contrast, the regular saline or glucose drips are set at 100ml/hr, and the Daunorubicin shot is 122ml, and it's given over about 5 minutes which would be an hourly flow of 1464ml/hr.

Other than this, just the usual 6am vampiricism, a change of my dressing on the Hickson line, and I had a shower! (Interesting task with open wounds that are not supposed to get wet and several tubes leading away from me to various sacs and devices.) I also slept pretty well last night, in contrast to the first night when I got very little, with the pain from the line wounds and a woman in the next room moaning most of the night.

I am still feeling perfectly normal. There is no nausea, fatigue, swelling, vomiting, upset stomach or even hair loss (at least that I can detect above and beyond that which has already happened). This would not make for a interesting TV commercial for a drug who's name is often mentioned but whose purpose is left a mystery. ("Talk to your Doctor to see if X is right for you", despite the fact that X is probably for removing feathers from chickens and you are not of the galliform persuasion.) I suppose the effects of the drugs will be cumulative, though, as I'm told the bad stuff will be starting around day 9 or 10.

WIF visited today around lunch time, though she only brought snacks rather than a full meal this time. After my lunch we went down to the cafeteria for hers. In the evening the screaming hordes arrived, wih Auntie M and Uncle G, SIB2 and Mrs SIB2 and SIB2KID2, bringing (and saying) sweet things.

Food and Media - Day 2

Food and Media - Day 2

April 27, 2012

Food

Breakfast: Toast (1 pc!), peanut butter, jam,rice krispies, orange juice, uncoffee

Lunch: Vegetable soup, salmon salad, lemon pudding, coffee
WIF brought grapes, cheese & crackers, strawberry-banana yogurt drink

Dinner: Grilled chicken thigh, brocolli, diced potatoes, jello, apple juice, uncoffee

Media

Books: The Lost Gate, Orson Scott Card (started)

DVDs: Robin Hood, Men In Tights

Chemo Starts - Day 1

Chemo Starts - Day 1

April 26, 2012

Today the chemotherapy actully started! Woo-hoo! Not that chemo is great in itself, but the sooner it starts, the sooner it finishes.

The therapy regime is called '7 + 3 Induction', because it is 7 days of Cytaribine, and 3 days of Daunarubicin. The Daunarubicin came first, at about 12:15. That's delivered as a big syringe full of a dark red liquid. It's about 120ml, or the size of a large cigar. I get that for three consecutive days.

The Cytaribine goes for seven days non-stop, and is in a small infusion pump the size of a large remote control, or a 1980's cell phone.

I can carry it around with me when I'm not otherwise connected to an IV (which, so far, is rare.) This started about 1:15, but I keep having trouble with it as it starts beeping irritatingly and saying 'high pressure'. You think you got problems, little machine? You don't know what pressure is.

Food and Media - Day 1

April 26, 2012

Food

Breakfast: Waffles, bran flakes, something almost, but not quite, unlike coffee

Lunch: Turkey sandwich, cream of tomato soup, tea, banana
WIF brought Pusateri's panini, and also berries, so I didn't eat the turkey sandwich.

Dinner: Beef stew, mashed potato, turnips, blueberry cookie, orange-pineapple juice

Media

DVDs: Yes Minister s1e12

Music: Slipknot (Sorry KID2, I don't get it.)
Glen Gould

Admission - Day 0

April 25, 2012

After getting the Hickman line, we went for lunch in the hospital cafeteria. Then we went up to the Cancer Ward to see if they were ready to admit me. They weren't, but apparently they had just left a message at home that a bed would be ready later in the evening, after 4:30.

We went to the ward lounge and chatted with the nutritionist who was presiding over Wednesday Tea. Then we went back to the car to get my luggage. WIF went home and I went back to the lounge to wait.

Here is where I ran into technical difficulties. I couldn't get wifi on my laptop, but I could on the ipad. This makes blogging more difficult, and slower. It seems I can post, but not edit, so please live with the spelling/typos until I can figure this out.

My room was actually ready at about 4:00, So I moved in. I saw DRLC who told me about the chemo for tomorrow. I was given dinner at 5:00. - some lasagna-like substance with corn mush, and later WIF and KID2 came to visit. In the evening I watched Harry Potter 7.1 on the iPad.

Overall, eventful without a lot actually happening. But at least it is started.

Hickman Line

April 25, 2012

We came in a bit earlier than the 10:30 requested for the 11:00 appointment and got a weekly parking pass set up. This means it's only $50 a week instead of $23 per day. That would have cost about $700 for the month!

Next, we went to the designated reception area and we're called in at 11:07 - a new world record! Then we were in a radiology ward, which RELSH says is the 'safest' place. They shaved my upper right chest area, so I'm now left-heavy and I expect I may develop a limp to the left. At about 12:30, the procedure room was available and a nurse took me in and prepped me. Basically more shaving and positing and covering me.

The doctor came in and did the procedure in about 20 minutes. It was somewhat painful as the local anaesthetic didn't seem adequate. But in the end it wasn't so bad. I believe the weight of the line more than compensates for the shaving, so now I think i'll lean to the right.

I am now a Borg.

Pre-Admission

April 24, 2012

Today I went in to Sunnybrook for the MUGA scan. Arrived about 7:45 for the 8:00 o'clock appointment, just as the reception desk in nuclear medicine was opening up. I gave in my card, as usual, and then waited until 8:25. Pretty good compared to previous experience.

I was then taken in to a room with a couple of chairs and received an injection of something. Then I went back to the waiting room for twenty minutes. After 20 minutes (on schedule - woohoo!) I went back to the room and got hooked up to a small IV.

This was connected to a plastic collecting tube, and at the side of this was a separate connector to which a larger metal cylinder was attached. Some blood (about a vial or two) was drawn into the metal cylinder, which was then disconnected an placed inside what looked like a lead crucible for 10 minutes. The point of this was to irradiate the collected blood with radioactive Technetium 99. After the ten minutes, the metal cylinder was connected back to the IV and the blood was re-injected into me.

Next, while I was trying to figure out how to shoot webs out of my wrists and swing from building to building, I went to the scanner (maybe a cat-scan maybe something else; I have no experience of these) where I had three electrodes hooked up to me, and then had to remain still on my back for two 10 minute periods while the images were collected.

The MUGA scan measures the Left Ventricular Flow (LVF) which is the percentage of blood that is pumped out of the left ventricle on each contraction. Higher is better. The point here is that this is a baseline taken before the chemotherapy starts, because some of the chemo drugs can do damage to the heart and lower the LVF. They want to know that it is healthy to start with so they can monitor it as the chemo goes on and adjust as necessary.

Technetium 99 has a low radioactivity and is generally harmless, other than the web-shooting thing. On the other hand, it has a half-life of 211,000 years, so by the time it has all decayed the Leafs may have won the Cup.

The Middle Ages

The Story So Far Part Two (see Part One first, obviously).

Note: re-written April 26th after 'technical failure'

April 2, 2012

We arrived at Sunnybrook for my 11:00 o'clock appointment. Checked in at the main desk, did the registration thing, then went to the waiting area for my bone marrow biopsy procedure. Then we waited. Then we waited some more. I checked at the desk in this waiting area, and eventually, a 12:50, they found my chart and sent it through. Finally, at 1:30 we saw DRRB. She was very apologetic that there had been some scheduling mix-up, but they can't do the bone marrow biopsy after 12:00 since they no longer have the rooms available. So instead she examined me and talked about the treatment in general. The procedure had to be re-scheduled. Aaaargh!

April 5, 2012

We went back again for the bone marrow biopsy. This time there were only minor mix-ups. We were sent donwstairs, then sent back upstairs to get blood work done. While there, DRRB's nurse came to find me to make sure I wouldn't miss the procedure again. The procedure worked much better this time as well. DRRB got better samples, both the aspirate and the biopsy itself. And there was less pain, due to the tylenol taken ahead of time, and maybe knowing what to expect. Also, I was lying on my stomach this time instead of my side, and that was more comfortable. We still need to wait 8 days for the results though, so this still seems to be dragging.

April 13, 2012

We met with DRLC filling in for DRRB. Results were not completely final, but it looks like I have a high level of MDS, with about 15% blast cells. The cutoff for AML is 20%, so I'm not yet there but will be pretty soon. But because of my situation (age, health, etc.) they will treat me as if I had AML anyway. We talked about other options, side effects, etc. Then I went to the blood lab to give a sample for HLA testing and to give them the contact information for the SIBs so they can be tested for a match.

April 17, 2012

Yesterday (April 16th) I received a voice mail from DRRB to leave a mobile number with her assistant so she could speak with me. This morning we spoke, and she told me she had consulted with colleagues at Princess Margaret Hospital, and we discussed several things. First, the cytogenetics (i.e. the genetics of the cancer cells, not my normal ones) was not super good, nor really bad - somewhere in the middle, making the prognosis pretty good. Second, they were progressing with HLA matching, which may take a couple of weeks. (We interrupt this post to tell of future news: As of April 25th, this has not been done, because PMH never received the SIBs contacts. They were resent and I was told by the PMH coordinator that SIBs would be contacted starting April 26th. Now back to our regularly scheduled post.)

The next steps are for me to get a MUGA scan, to determine a baseline to monitor the effect of the potential heart-damaging chemo drug, and have a Hickman line put in. Following that, I should be admitted sometime next week.

DRRP told me to expect NOT to work during the inter-hospital period, and expect to be of wok for up to a full year. I was expecting maybe 6 months, so this was a surprise.

So the overall treatment plan is this: 1) in hospital induction chemotherapy, consisting of three days of one drug and seven days of another (simultaneously) followed by one month in hospital for monitoring; 2) several months of mostly out-patient consolidation chemotherapy, probably a few days a month; 3) bone-marrow transplant, from a SIB or from a match on the unrelate bone marrow donor registry; 4) several more month of post-transplant recovery.

Pre-History

The story so far ... February and March 2012

February 8, 2012

It all started back on February 8th. Being a nice guy, I went to donate blood. I've done this over 50 times in my life, and never had any problems. But I've always, before now, donated whole blood. And the screening they do for that is to drip a drop of blood from your middle finger into a copper-sulfate (sorry, American spelling) solution to test your hemoglobin. This works by timing how long it takes the blood to drop through the copper sulfate solution. If it's fast enough, that means the blood is dense enough and therefore has sufficient hemoglobin to carry on with the donation.

This time, though, I was donating platelets. This is a bigger deal, because they have to centrifuge your blood to extract plasma and platelets, and return the rest (mainly cells, and more plasma) to you. It takes much longer - a couple of hours, usually. So you get hooked up to the machine first (after the usual questionnaire and basic blood pressure test), and as it is working pumping blood in and out they take a sample away to do a CBC, or complete blood count.

Long story still pretty long, my counts were low. The phlebotomist (yup, it's a real word meaning a licensed vampire) said that can happen sometimes, no worries, let's take another sample from the other arm. Same problem. So, the blood donation is aborted, and I'm advised to go see my doctor.

February 10, 2012

I went to see my family doctor, DRGR and he examained me and said he didn't think it was anything serious. He took some blood, and that was all.

February 13, 2012

DRGR called me to come back in to discuss the results. Apparently, my blood counts were still low. Back in November, 2011 I had an annual check up and everything seemed normal at the time. So again, he didn't think it was very serious, probably not lymphoma or leukemia, but still there must be a problem with the bone marrow no producing enough cells. DRGR suggested an appointment with a hematologist.

March 15,2012

After a long wait to get the specialist appointment (nearly a month), I saw DRMT at St. Michael's. She examined me again, and saw the previous counts, and didn't think there was anything major going on. (Theme here. About to change.) She sent me for more blood work, and scheduled an appointment for a couple of weeks later. She said if there were anything serious she'd call me by 5 pm.

Well, 5 pm rolled around, and I was feeling a bit relieved. But a few minutes later, DRMT called and told me that the neutrophil counts was a concern, and to come in for a bone marrow biopsy. Uh-oh.

March 19, 2012

Feeling a little apprehensive, I went for the bone marrow biopsy. DRMT was there, as was a resident (oncologist, I think) who would be performing the procedure under DRMT's supervision. As she was a small woman, and my bones are very strong (like an 18-year old, they said - I bet they tell everyone that, including MOM, who does!), there was some difficulty, and more pain than I'd expected. In the end, they got a pretty good bone sample, but not much of the aspirate.

March 22, 2012

I went back to get the results. DRMT said the results were non-diagnostic due to the insufficient sample, but it looked to be either Myelodysplastic Syndrome (MDS) or Acute Myelogenous Leukemia (AML). DRMT wanted me to do a follow-up / 2nd opinion at Sunnybrook, to be scheduled following week.

(continue with part 2)

Media

Media - Books, DVDs, Music, Television

Following is a list of what I've been reading, watching and listening to, and what I think about it or what it makes me think about.

Please feel free to comment with rebuttals, or more usefully, suggest other media that complements or contradicts anything you see here (or see-hear!).

General philosophy of this page is De Gustibus Non Est Disputandum, but more specific philosophy, based on rule #1 is Mea gustat regula

 

Books

Title	Author	Genre	Notes
REAMDE	Neal Stephenson	Sci-Fi / Thriller	Not his best. Pretty good though. Thriller plot mixes up MMORPGs, Chinese Hackers, Russian Mafia, and Al-Qaeda. Does't match 'Snow Crash' or 'Cryptonomicon', or even the 'Baroque Cycle'. About on par with 'Zodiac' and 'Diamond Age', though the latter has special geek-apeal with allegories of historical computing theory (which admittedly may have a 'limited' audience.)
The Hobbit	J. R. R. Tolkien	Fantasy	Great. Nth time through, still a page turner. I heard a rumor about a movie.
The Lost Gate	Orson Scott Card	Fantasy	A bit young (teen-ish), but quite good. Reminds me of cross between Card's 'Ender' series ('Ender's Shadow' in particular) and Pullman's 'Subtle Knife', with a smattering of Thor and Adam's Dirk Gently series.

 

DVDs

Title	Details	Notes
Harry Potter	7.1	Need to see 7.2 now, And 1 through 6.
Yes, Minister	s1e1	Different opening credits
Robin Hood, Men In Tights		Was going to Match LOTR, but somebody removed it from the case! I figure this will be similar. (Later) It wasn't. In spite of Jean Luc Picard meeting up with Farmboy Wesley, it's among Mel Brooks' weaker effort. He's reused jokes from previous movies. He should have tried recycling, or reducing in this case.
Yes, Minister	s1e2, s1e3	e2 riffs on Stateroom scene from Night at the Opera e3 doesn't end with Humphrey saying 'Yes, Minister'

 

Music

Artist	Album	Notes
Pink Floyd	The Wall	Actually Pulse Disc 2, which is a live version of The Wall
Slipknot	All Hope Is Gone (Special Edition)	Sorry KID2, not my cuppa.
Glenn Gould	Art of Glen Gould - Bach, Beethoven, Haydn	Cure for Slipknot
Fleetwood Mac	Best of …	"Don't stop, thinking about tomorrow, Don't stop, it'll soon be here, It'll be, better than before, Yesterday's gone, yesterday's gone" "Yes I can live today, If you give me tomorrow"
James Galway	Essential James Galway vol 2	Pop-tunes and movie themes
Chicago	Greatest Hits 1982-1989	Yeah, oldies. (Not the musical / movie)
Mozrt	Introducing Mozart	I thought we already knew him. Also, even oldier.
Bach	Brandeburg Concerti	Oldiest, so far

 

Television

Show	Season, Episode	Notes
Big Bang Theory	s5e22	The Stag Convergence
Fringe	s4e19	Letters of Transit
Fringe	s4e20	Worlds Apart
Once Upon a Time	s1e20	The Stranger
Amazing Race	s20e10

Be A Donor

Though you probably can't help me, there are always ways to help others by registering to be a donor. Here are some options:

• Give blood. In Canada, go to Canadian Blood Services to find out how, where and when.

  I was a blood donor - and that's how I found out I had a problem. Since I don't have any symptoms (at present, anyway), it might have been several months before I was diagnosed. Instead, routine blood tests when donating tipped me off early. So, give blood - the life you save may be your own!

• Get on the Unrelated Bone Marrow Registry.

  Since only full siblings are possible matches; even slightly further relatives are no more likely than any random person to match me. But it could happen, and it would be found if you were already registered. And maybe you'll match someone else, while some other random donor might match me. I'd call that even.

  Note that you need to be between 17 and 50 to get on the registry, but if you're on by that age they'll keep you on.

• Think about organ and tissue donation before the time comes that you don't need them yourself.

PsAcronyms

Here is a list of Pseudonym-Acronyms, or the latest future hipster-like trend to hit the inter-thingy, Psacronyms!

People (pseudo-people anyway)

Who	What	Description
Family
CMC	me	male, 50-ish
WIF	spouse	female, 50-ish
KID1	son	late teens, in university, aka SON
KID2	daughter	mid teens, in high school, aka DAU
MOM	mother	80-ish
DAD	father	deceased at age 71(1997) of lymphoma
SIB1	oldest bro	50-ish, aka BRO1
SIB2	older bro	50-ish aka BRO2
SIB3	sister	50-ish aka SIS
Doctors
DRGR	family doctor	(since 1990, or so)
DRMT	hematologist	first specialist I saw, at St. Mikes
DRRB	hematologist	my main Dr. at Sunnybrook
DRLC	hematologist	colleague of DRRB
DRxx	medic	various other docs
Other Relatives - Use initials in place of 'xx' if you want to pseudo-identify yourself to people who know you
RELxx	relative	any relative of CMC or WIF not listed above
Friends - Same 'xx' note
FRDxx	friend	anyone who's not related to me or WIF
Co-workers - Same 'xx' note again
WRKxx	co worker	anyone from my work, past or present (and hopefully, future!)

Other Strange and Exciting Terms

Eh?	What	Description
AML	Acute Myelogenous Leukemia	(Sometimes called 'myeloid')
MDS	Myelodysplastic Syndrome	(formerly known as 'pre-leukemia')
ish	adjectival prevaricative suffix	if attached to a number it means 'more than' by any amount somewhere between a tiny bit and laughably too much if attached to anything else it means 'not really'

The Rules

I figure if I'm going to have a Blog, I get to make the rules.

So, here are the rules.

Rule #0

You must follow the rules.
Sometimes I will follow the rules too, but that's not one of my rules.

(Why #0? See Rule #3)

Rule #1

Tone. Let's keep it light. As much as possible anyway.
Cancer is not funny, but it's much easier to get through it (and to get through life in general) if we can all have a sense of humor (which may, in my case, include sarcasm!).

Don't have one? Try amazon.

Rule #2

Anonymous. I'm trying to keep this anonymous, and not name anyone who isn't already famous. So all comments may be made without any sign-in whatsoever. Please try to follow this rule as well, for the sake of others if not yourself. If you really do want to identify yourself, I suggest using either just your first name and last initial, or use the pseudonym-acronyms. But I WONT be moderating your comments (I expect to have other things to do), so it's up to you.

Perhaps I'm too paranoid, but I'm told that beats three noids of a kind.

And, BTW, if you think you are famous and you are still referred to by a pseudonym-acronym, I'm sure you can find another blog to deal with your 'issue'.

Rule #3

The G word. One day, I went to my parents and told them "It's time I came out of the TARDIS. I'm a Geek." They said "We know. We've always known. We love you anyway."

You too can be a geek. It's ok. If you see too many obscure references, go read / watch Hitchhiker's Guide to the Galaxy, Lord of the Rings, Monty Python, The Princess Bride, Star Trek, Star Wars, Young Frankenstein, et al ad infitnitem. (n.b. previous list shown in alphabetical order to eliminate possibility of favouritism and prevent global-thermonuclear-geek-flame-war.)

When you can contribute your own obscurities, grasshopper, you will finally be ready to admit to your inner-geek.

Rule #4

No Adult content. No more 'splanation required. End of 'scussion!

Rule #5

If you have particular views on religion, spirtualism, psychic powers, no-traditional medicines etc., that's fine, and I really honestly appreciate that from your point of view this may help you (and perhaps me). So good wishes stemming from your beliefs are alright, but as I am not of the faith (any one you'd like to mention), I don't want to get into debates about 'do this, follow that', etc.

Rule #6

There is no Rule #6.

Rule #7

Topics can be anything I like. (See Rule #0)
Frequency will be whatever I can manage.
Diversions may happen. Diversions of diversions may happen.

Rule #8

All rules are subject to change at any time at my sole discretion, except Rule #8.

About the Blog

This is the blog for Canadian Man with Cancer.

The cancer in question is Acute Myelogenous Leukemia (AML), and it's related disease Myelodysplastic Syndrome (MDS).

This started up with me in February of 2012, and while I am undergoing treatments and life in general, I intend to use this blog to keep anyone who's interested up to date. I may also use it for random topics to help relieve me of boredom, and anyone is welcome to join in on any topic he or she likes.

I'll assume that you, visitor, either know me and have been given the Blog address in order to keep in touch vicariously, or you have stumbled in as a result of searching for cancer or leukemia or something similar. In either case, you are welcome here. If you do know me, then you'll probably know many of the other people I refer to cryptically (see the psacronym page for some de-cryptification. And if not, it doesn't matter.

And don't forget to check out the Rules please. Though they may sound strict, I am nothing if not flexible. (Quiet in the back, there.) So if they aren't working out, I'll consider changing them.

About the CMC

I'm CMC, or CanManCan.

You can call me:

• CMC, or
• CanManCan, or
• Cancer Man (from) Canada, or
• Canadian Man (with) Cancer, or
• Cancer Man Can (beat this cancer), or
• Canadian Man Can (beat it),
• But ya doesn't have to call me Johnston.

Here is a picture of NOT ME.

That's the 'Cigarette Smoking Man', or 'Cancer Man', from the X-Files. I don't look like that. And I don't smoke. (But apparently, neither does William B. Davis, the actor playing the CM. And he is Canadian too. All the coolest people are.)