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