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)