Before the War

Day 30 Don't have the numbers handy, but Whites & Neutrophils were not down at least.  Platelets had dropped below 50, so I got a transfusion.  Hemoglobin was still holding, so no blood. Diner was "Seafood Chow Mein", and that sounded disgusting enough for me to have a quick snooze off of the transfusion pre-meds, and drive through rush hour to spend the night home ! Day 31 No appointments today, so I get to be at home for the whole day, and night ! I did my daily exercise by going grocery shopping - Sonja hates it, especially with both boys, and I find it calming. Sonja had a "Girls Craft Night" planned, and Gram and Papa were coming out to watch the boys on Saturday Night.  I still only have about 2-3 hours endurance at anything, so they still came out.  We all watched "Up".  Good Movie. Day 32 Up early for a 9am appointment, but both boys woke up before I left so I was able to give big hugs and goodbyes.  Traffic was nice and ligh...

Wasn't in the LBMT unit today, so I have no idea what my numbers are. Yay ! Sonja's Uncle Len popped by today to break me out.  Through elite VPD timing, I was able to bust out and leap into his jeep before anyone new what happened. Got to enjoy a Starbucks Hot chocolate, and a fresh air walk around Spanish Banks.  No rain, clear air, and no damn traffic.  Thanks Len !. I managed to sneek back in during the lunch time confusion, and the warden was none the wiser. I had to crash in the afternoon, as I just couldn't keep my eyes open.  Normally they wind up giving me sleepy drugs in the morning, and after sleeping through the morning at LBMT, I have enough go juice to make it through an afternoon. No drugs, no sleep, crashed. We'll see what tomorrow brings.  Hopefully my levels will have stabilized, and they will let me go another few days.  I might even be able to sneak home for the weekend, but we will have to wait and see.  Monday and T...

W 2.0 / H 0.9 / H 94 / P 64 Rushed in for 8am, got my blood taken, and secured a bed for the lumbar puncture later.  Then I rushed of to the Eye Center so they could look into my eye in detail.  The resident basically did the exact same thing the on-call resident did at the ER, and came to the same conclusion.  He had a confab with the Attending, and he had a look at it, and confirmed the theory.  There are some small hemorrhages on the retina and the big one, that I can see. Next step will be an eye imaging on Tuesday with a funky dye in the blood stream to see if it's a flow blockage vs a flow leak.  Then a follow up appointment a week later. Then, back to LBMT to get my Micafungin IV, Fluids, etc. Since my Hemo and Plates were good, I managed to get away without a transfusion, but still had to wait around for the fluids to finish, and then for the lumbar puncture. They gave me 2 Adavan pills to mellow me out.  I don't have a problem with needles...

W 2.7 / N 1.8 / H 85 / P 42 I had an Ultrasound appointment at 2pm, so nothing but a piece of dry toast and clear fluids until it was over. I was in early at 8:30 to get my IV meds, fluids, and another bag of platelets.  That wrapped up around 11:30, and then headed over to the Heart Center to have my portable EKG monitor removed. Just after 12:00 that was done, so I went back to the Lodge, dropped off my computer to lighten my load, crashed for a few minutes, and then headed back to VGH for my CT Scan at 1pm. That was done by about 1:10pm, so I waited around at Ultrasound for my 2pm.  They got me in early, and were done by about 2:45.  Back to the lodge, ate a pizza pocket from my private freezer stock, then went up to the "Den" and fell asleep in front of the TV until just before dinner. Tomorrow, they want me in a 8:00 to get my blood work collected, then rush me off to the Eye Center to have my eye scanned, then back to LBMT to get my meds, fluids, platelet...

Sorry for the lack of updates.  It's been quite a weekend. Sat 24th - W 2.0 / N 1.2 / H 90? / P 19 Got platelets.  Since I was feeling good enough, Sonja and the Boys picked me up in the afternoon, and I spent the evening and morning at home. It was great to be back home for a night.  I needed the refresher. I was not given a shot of GCSF as planned from the previous day since my whites were going up. Sun 25th - W 1.7 / N 0.7 / H 90? / P 34 No platelets, and the Hemoglobin seems to be holding. My whites went down though, so there is some concern, and they shoot me up with another injection of GCSF Sunday afternoon while working on the computer, I started to notice a problem looking at the screen.  After trying different things, I work out that I have a grey blotch in my left eye view, just left of center in my field of view.  My brain is working out what should be there by using the right eye's view, but if I close my right eye, it's pretty apparent. ...

W 1.0 / N 0.5 / H 94 / P 36 So, there is this alarm that goes off in the area behind the lodge.  It's either from a car, or from a building in the strip mall that backs on to us.  It manages to go of at really bad times during the night, and has become a topic of discussion around here since there is not much else to talk about except pain and discomfort. Last night it went off just before my alarm at 6:30.  I had been tossing and turning for a few hours anyway, so I had enough energy to get up, put on pants and shoes and go out on the balcony to investigate. It would give me something to talk about over breakfast. There was only one car in the lot at the time, so we have a suspect, but it still sounded like it was coming from one of the stores.  Further investigation will be required.  Once the culprit is identified, it's hard to say what a bunch of angry depressed cancer patients with an axe to grind, and a balcony view of the target will do. Glad it...

W 0.4 / N 0 / H 94 / P 28 As expected, another bag of platelets. The white count doubled again, but still well within the level to indicate nothing. Tired.  Still a bit "Drunk" when I move around, but they think adding the extra fluid IV will fix that, or at least give them something to try until it goes away or gets worse.

W 0.1 / N 0 / H 80 / P 32 So, I was feeling pretty bagged walking to VGH this morning.  There was an ant going faster then me by the time I made it to the top of the incline.  I knew hemoglobin would be coming, and the fungus is probably making a comeback and reducing my lung capacity. Beverly got the special approval forms ready for Dr. Z to fill out, and once he completes the required steps, I can up the GCSF shots at a special pharmacy just a few blocks away. Made it out just after 2pm, and was out of it for most of the afternoon.  Just fatigue, and arse pain.  The goatee wiskers started coming out last week, and the rest is heading out now.  Eyebrows (sorry babe), eyelashes, head, face, body, etc.  Should be almost a complete wipe out this time, I figure. I took some pictures of my room, but I am too wasted to try and bother getting off my phone right now.  I wasn't even going to bother posting, but that would just mean I would have to do...

W 0.1 / N 0 / H 84 / P 24 I figured I would need some platelets, and I was right.  Probably even some tomorrow. I asked to see my social worker at the hospital, Beverly, if she was around.  I wanted to talk to her about what paths might be available to get this medication. She was not available while I was there, but she did call me later, and yes, there is a solution to have this covered, and she has been telling them at the LBMT over and over but nobody listens. So I will see her tomorrow, go through the hoops, and get the drug approved and filled.  I will give back the due, and any leftovers so they have it to give to the next brave soul that decides to say No. Also, to anyone who cares, and might wind up in this situation, and might even read this blog - once you hit 100% coverage under Fair Pharmacare, it means 100% coverage.  There is no Partial coverage - it's all or nothing once you hit that limit. The pharmacies seem to like to tack on a little ...

W 0.1 / N 0 / Hem 82 / P 19 Got the second bag of red, and a bag of platelets today.  Not much else going on. Got the shot, and didn't have to beg since it was the same nurse as before, and she already knew the details. She did mention that there were programs available to help. I will try and speak with the hospital social worker on Monday.

W 0.1 / N 0 / H 74 / P 14 Yikes, Big Drop !  Too much exercise ;) Got a bag of platelets today, and one bag of blood, since there was not enough time to squeeze in the second. The kids were at Gran and Papa's last night (Thank You !), so Sonja was able to spend the night at the lodge since the space was available now that my roommate is out in another room. We went up to the mall to get some diner for Sonja, and then headed back to the room.  A little tour of the place, and a meet and greet with the guests I am familiar with, and then back to the room to eat and relax (the low hemoglobin was hitting me).  I managed to download the episode of The Office we both missed, and we watched that, and turned in for the night. Sonja got to experience the cafeteria food this morning, but much to my dismay they managed to cook up the rare provision of hash-browns pretty good today.  Now it seems I am being too picky.  Prison food probably tastes pretty good on th...

W 0.1 / N 0 / H 90 / P 32 Over the cutoffs today, so no transfusions.  Probably platelets tomorrow though. The GCSF injection (see yesterdays post) turns out to be not covered by "FairPharmacare", and is not provided unless you are an "In Patient" in the hospital. Dr. Z gave me a prescription for it, as he has to, to follow policy, but said that it would not be covered, but that extended medical would should cover it. Well, that's all fine and dandy, but even with extended medical, it's only 80% coverage, and the drug is $3200, and they "Get Around" to sending you the cheque.  I am on welfare, so where is $640 for the deductible going to come from ?  We're already borrowing money so I can stay at the lodge.  Heck, I still still owe money for property taxes ! So,  I said "No.  There is no way that can happen, so they are just going to have to worry about paying for all the drugs for fixing my liver later.  Maybe I need to be talk...

W 0.1 / N 0 / H 92 / P 27 I got platelets today, and they were a long time in coming.  Marty is has been on my nurse shift for a few days, and she had the foresight to get my blood match ready the day before, so it was a lot quicker then it could have been. My liver has started to show signs of being pissed off with the fungal infection, so they have decided to give me GCSF injection for the next five days. It's a hormone that will try and kick my production of white cells into high gear, so they can start fighting the fungus.  The only anticipated side effects are bone and muscle pain. Other then that, not a bad day.  Tomorrow is Friday.  The 13th.. I wonder what that will bring ;)

W 0.1 / N 0 / H 94 / P 35 Hemoglobin and Platelets were over the cutoff, so I didn't need any products today.  Only the Micafungin anti-fungal IV drip, so I was out within 2 hours. Not much going on today.  I will probably venture out later to pick up a razor and shaving cream as my hair has started to come out. Ass is sore, but stable.

W 0.1 / N 0 / H 94 / P 27 The nurse didn't think I would need platelets today, but I thought different.  Unfortunately I was correct. It was well concentrated, and she let it flow quick, so it only took about 45 minutes, and I was able to get out of there and back to the lodge around 11. Still had to get the premeds though, so I crashed once I got back.

Sunday - W 0.1, Neu 0, Hemo 89, Plat 34 So the Hemoglobin went UP today.  WTF ?  "It happens" is the best explanation.  That's the safe way to say "We're really just winging it here as far as the symptoms".  Either way, it means I didn't need to get any transfusions.  Sonja and the Boys arrived just after 2pm to pick me up.  We stopped off at a Rogers Video on the way so I could pick up some videos for me, and then at the Mall in Richmond so Sonja could check into a sale to see if we could get the boys their Christmas outfits.  No luck. We made it out to GranDan's around 3.  Had a bunch of fun with the boys, and got to enjoy Dexter having a fit trying to creatively get to every phone in the place.  GranDan got us Chinese food for dinner, and I think it was good.  My tastebuds are shot, but the rice and chowmein went down nicely. We packed up and headed out just after 7, they dropped me off around 8, I gave a big hug to AJ and So...

Ass hurts.  Still a ways to go before it is as bad as last time though. My transfusion of platelets didn't push me over the mark, so I got another bag today.  Hopefully tomorrow there will be no top ups, since Sonja and the Boys are coming to pick me up for a visit/dinner out at GranDan's. I left the numbers up in my room, and I am posting this from the downstairs common room, but basicly it was nothing for white/neutrophils, down a point for red, and 28 for platelets. and the beat goes on.

Again, not feeling too bad. The 'roids are starting to develop, so they are going to preemptively add a intestinal antibiotic to my cocktail to prevent anything sneaking in from that. They started me right off with platelets, which was good because the count was only 21, and then followed up with a bag of hemoglobin. They didn't give me the second bag, since my count came back 3 points higher at 88.  Chances are someone/thing miscounted in the lab either yesterday or today, because I didn't get 3 points from my marrow.  Maybe aliens. The pre-meds (to prevent a reaction to the transfusion) hit me pretty hard today, and I was sleeping most of the stay. I may get the second bag tomorrow or Sunday. My roommate Don is out for the weekend in another room with his wife, so as long as no new sickie shows up I will probably have the weekend to myself. Chances are they will keep Don where he is so I will probably have a new roommate Monday. In tomorrow bright and ear...

So, this morning was the CT scan.  I ate my piece of dry toast for breakfast on my way to VGH.  CT scan was quick (about 5 minutes) and on time. Then I headed back to the lodge, had my shower and got ready for the day.  Back to contacts today now that the chemo is 48 hours over - I hate wearing glasses, especially in the rain. Setup in the 'Den' and tried to get some computer work done and keep my mind off my growling gut. Headed over for my ultrasound (late and long), and then up to the day unit for my IV Antifungal, Fluids, and Bloodwork. And Food - A Yummy meal replacement bar, a bag of sunchips.  My tastebuds are definitely gone now. CT Scan results were good, and the fungal infection is going down in the lungs, but the Ultrasound shows no change in the liver.  This is not unusual.  Things are not worse, and that is the key.  The bummer is that I will be daily at VGH for some time to come (weeks).  I was hoping for a day off this wee...

Nothing much going on.  Side effects are starting to develop, but still not bothering me much.  Tastebuds, crapper, etc. The fatigue is hitting pretty hard, and I can't stay awake for more then a few hours.  The bonus is that it makes the days go by quicker. I was hoping to maybe go home for a visit this weekend, but after talking to the doctor today, they will not be stopping the IV Anti-fungal no matter what the results of the tests tomorrow are.  So, in every day for some time to come. White/Neut cells are gone, Red was a 86, and Platelets at 29, so I got a transfusion this afternoon. CT scan bright and early tomorrow at 7:50, then ultrasound at 1pm, then up for IV at 2:30. Nothing but clear liquids after midnight tonight until after the ultrasound, but I can't eat after 2pm for one of my pills, so I will have a narrow window between ultrasound and LBMT to get a meal bar into me. Since it is a afternoon ultrasound, I am allowed a piece of dry toast in ...

So, my ECG yesterday was OK, so I can go ahead and take the pills that have an effect on it.  My ticker hasn't freaked out in a few days now, but I am still getting fitted for the halter monitor next week. The intestinal lining is starting to go, so I need to keep near a crapper.  Taste buds are heading out.  Tired and hard to focus on things. The Cough is starting to go away, so that's a good thing. Counts today are White 0.3, Neut 0, Hem 95, Plat 41. Judging from the platelet drop I probably will be getting platelets tomorrow.

Day 6, last day of chemo. Hopefully the LAST day of chemo ever. I felt pretty good this morning, and didn't need to take a gravol to keep the puke back. Some eggs and hashbrowns as usual, and then off to VGH for 9:30 I am still under isolation there, but not for tomorrow.  White and Neutrophil count is still hanging at around 1, but should be gone in a day or two. Platelets were around 70, and Hemeglobin was 82, so they decided to give me some red cells since the fungal infection is still zapping my lung function. I also had an ECG today to make sure everything is ok with the ticker before I start the next round of after chemo drugs (some of which can affect it). That pushed my "visit" until just after 4.  - This is one of the main reasons I am at the lodge. Back at the lodge, I unload, then walk across to the Safeway to pick up some instant noodles for the next "Long Day" with no food. Still feeling ok enough to wish I was at home, though I d...

Today has been OK (generally speaking). It was nice to sleep and wake up in my own bed, if only for a night.  Barfed nothing again just as we were going to bed, but I felt better after that. I spent the morning trying to do a bunch of things I wanted to get done before going back.  Like redoing Sonja's computer, and get the printer working on it.  Downloading some more TV shows since there is no TV in the room, and my internet is through my cell phone, so I can't go crazy on it.  Not enough time for any of it, but did get to play some "superhero motorbikes" with AJ and Dexter in between it all. Packed up my clean clothes, and things I had forgotten last trip. Early morning on the Nov 1st, I am usually going out to the stores to score some ultra discounted candy (which if I was the one rationing it, would last us months) from Superstore, Walmart, etc.  Same for the day after Easter (that's the biggest one). This year I was unable to attend, but big th...