Taking Medications & Status Update

I am having to sit up for an hour as I just took my Actonel. The pharmacist, shortly, upon my arrival here, informed me that I've been taking the Actonel incorrectly. It has to be taken on an empty stomach, I have to be sitting up for at least 1/2 hour preferably a full hour, and drink lots of water with it. Boy am I glad I only take this particular pill once a week. And of course I can't have any calcium at the same time.

Then she later proceeds to tell me that I'm not taking my calcium in an optimum manner. Because I'm on mega doses it needs to be split up through the day to allow the body to absorb it. In case you are wondering what mega doses of calcium are it's 2000+ mg of calcium daily.

Last night I started the voriconazole which is an anti-fungal drug. Dr. Loach said that the CT scan I had done yesterday shows the nodules on my lungs have gotten a littler bigger. These are the nodules that appeared when I relapsed in 2000 that they were unable to get a biopsy of. The CT scan also was still "hazy" meaning I guess that there is still a lot of congestion. He said I would be here until next week at least - they will do another CT scan at that point. They are not sure that I have a fungal infection - but they are not sure what the deal is with the nodules. So Dr. Loach said they would rather overtreat which is why they've started the voriconazole.

At some point they will want to do another bronchosopy to try biopsying the nodes again. However, for the same reason Dr. Chan couldn't fully sedate me last Monday for the bronchosopy he did they will wait because the risk factors with my lungs in such poor shape is too high.

I am having a really hard time staying alert/awake while writing this. Granted it is 7:14 an and I normally would be on a GO train napping on my way into work. But it's a little frustrating to suddenly find myself staring out into space or worse my eyes closed!

It looks like p can come and visit today. I am so looking forward to that. Haven't seen him since he left me at emergency because he's been too sick. So awful that noone there to take care of him.

Leg wound is doing well. And might even start healing a little faster as they dropped the prednisone back to 25 mg. Dr. Chan had increased it before the bronchosopy to try and give some lung function back.

The Joys of Low PFTs

So here I am. On the 14A ward at PMH. Spent last night at TGH emergency. Lungs got so bad yesterday had to do something.

A week ago Friday I saw Dr. C and my PFTs were so bad that he scheduled a bronchoscopy for the Monday so he could figure out what we are dealing with before he committed to a treatment. Went back to work Thursday , Friday had to stay home. Couldn't get hold of Dr. C and his admin suggested I try Dr. L who said yes come. I explained what had been happening and he said well I can't leave you without anything at this point. he consulted with the infectious diseases person here who works with immune compromised patients. Because one result from the bronc came back positive for a viral flu - no not the N1H1 variety but at that point they didn't know which one it was other then not swine flu - it was suggested that he prescribe Relazon which is for viral influenzas.

Of course there was most a hitch. Got down to the pharmacy to discover they didn't have any in stock and nor did the other pharmacy that we called. Called the inpatient pharmacy and yes they had some but they were reluctant about parting with any. Plus it turns out that because of the current status of N1H1 pharmacies can't directly order the drug - the ON government has the say in divvying it put. the long and the short - they did give me the first half of the dose.

So I started the puffer on Friday night. By Sunday I was sicker and sicker. To the point that finally P and I looked at each other and said - okay we have to do something. I was sitting in a chair at my computer and not able to breath.

We called the oncall nurse here at PMH who was a little concerned that we wanted to come into TGH emergency because she could hear I was in distress with my breathing as well as emotionally. The long and short was I did not want to go to emergency in Hamilton because we have just not been having good experiences with either Mac or HGH. I could have gone to urgent care at St. Joe's in Stoney Creek but I didn't want to be admitted in Hamilton. It just doesn't make sense - they don't know what to do with me. So we drove to TGH.

We arrived at 7:05 pm. Before 8 pm I was triaged, in a room with the door shut for isolation purposes and on oxygen. By 10 pm they had done an x-ray and bloodwork/blood cultures. P finally left at 2 am - he was so sick. I was so very worried about him having to drive home alone back to Hamilton but what could we do? The animals needed someone and while yes there were any number of people that would have put him up it was better that he go home. The doctor, when he came in, said we are just waiting to see where we have a bed for you. Fortunately, in the morning when they came back it was at PMH. Thank God. And even more fortuitiously, on the 14th floor. So while not in the transplant ward I am across the way and Dr. Loach has been coming in to see me except for the weekend. (I started this post on May 5th and am continuing it May 10th)

So the long and short is that I have a para-influenza virus. The only treatment is rest and in my case oxygen, steroid inhalers and stuff to deal with the coughing fits. I've been here Monday morning till now, Sunday night. Lots of visitors - I am so grateful. It keeps my spirits up. Malcolm and Stella, Barbara and Christine, Becca and Emma, Sue, Nancy, Sherman and Jim. I've probably forgotten someone. And of course my Mum and Dad who have been absolute troupers. Thank god for parents. I just wish my mother's day present wasn't a day at the hospital...

So, we are waiting to do a CT scan and beyond that I don't know what is happening.

I figured I should finish this post though because I realized I left some things out in my next post. And I've probably still missed things.

The Joys of Prednisone - Eyes

Today I have a wicked burst blood vessel in my eye that occurred sometime between leaving work and sitting on the GO train.
----------------------------------------------------------------
Sent by Text Messaging from a mobile device.
Envoyé par messagerie texte d'un appareil mobile.
----------------------------------------------------------------

The WCB

Today I called the caseworker from Workman's Comp because I was concerned that the reports I was being sent to complete or have completed didn't have my leg injury on them.
 She took the opportunity to take detailed notes and find out when all my past and upcoming appts were and are. She was really nice. Embarrassed me tho. She said you are so brave. My response was my usual - I just do what I have to. She said, no you are brave and she emphasized it again when she heard how long I've been dealing with this illness. She said that the person that I dealt with initially at the WCB couldn't say enough about me. She said that they deal with people that just have aches and pains and take time off and here I am back at work. I said that it doesn't do me any good to sit at home and mope. Not that I don't mope but I would rather be busy because it's better for me.

It was an interesting perspective of me. I really don't think of myself in this way. If anything I feel bad about how much I moan at p when I am not feeling and certain of my friends that are privy to my complaining. I guess there are a lot of people who take advantage of the system.

She was concerned that I was using my lieu time for Drs appts. She said you know the WCB will pay for it. And you can probably even get work to front the money and be paid back by the WCB. She was worried that I would use it all up for this and not have anything left if something else happened. It's nice to know I have that option - but I would rather do it the way I am currently. It is also nice to know that a complete stranger on a government board is so supportive.

It restores my faith in the system. Especially after my experience last year when the insurance company was going to deny my claim because it was an unreasonable amount of time to be recovering from pneumonia. Again, I was lucky - the nurse at work stepped in and took care of it and set the insurance company straight. I know that even if she hadn't Jeff would have fought for me but because she did intervene I wasn't put through an undue amount of stress because it got resolved so quickly. And I am grateful to CP for that. We think that the reason it was denied was because the more experienced insurance agent had gone on holiday and his replacement was new and only saw a chance to save the company money - not that there was a legitimate claim. He probably didn't fully read through my case! All he saw was a longer then usual recovery and going by the books it could be denied!
But back to the WCB - I really feel supported.

A lot of paperwork though. She wants me to check in monthly even if nothing has changed - and I need to keep them apprised of any appointments related to my leg. Oh, and I think my caseworker was surprised/impressed at the depth of understanding I have about my current problem. That's despite not being able to look at the injury myself! She said it sounds like I am in good hands with the care I am receiving. I agree.
 I have to remember to do a couple of things - one is some forms that HR is supposed to provide me with. I guess they didn't bother because I am back at work seemingly with no limitations. Tecnically that is true. There are no limitations that afffect my work. Just the rest of my life!! Like the no exercise...

Speaking of my leg. Here is where things are at. I saw PS and Jeff at PMH last Thursday on the 12th. She doesn't think that the iodide gel is the right treatment as it is not a debrider. It is good for keeping bacteria down and preventing infection. She even looked it up and tried to consult with a colleague. However, she said we would stick with it until the end of two weeks which is March 21st. She thinks hydrogel or the Silversorb would be better for debriding purposes. But she didn't want to keep changing the treatment either because that was the third approach taken to date.

Then Jeff came in and took a look and said I need to see a plasic surgeon. He asked if I could do it through my GP because although PMH has plastic surgeons they are used to dealing with oncology related issues which tecnically mine isn't in the sense that it wasn't directly caused by cancer. Yes, related but not directly. That makes sense to me actually. So we asked if p's GP (and I don't mean guinea pigs in this case!) would take me on as a patient. He said yes and wrote me a referral letter for a plastic surgeon at St. Joes in Toronto. That was to be sent today. PS said that it's not likely that they will want to do a skin graft for a couple of reasons. One is why make another wound when there is alrwady one not healing. Another is where would they get the graft from? My skin due to the prednisone is too fragile and in no shape to use. She said she thought it more likely that they would go in and clean out the necrotic tissue manually. I am not looking forward to that. Actually, I am kind of hoping they might suggest using maggots. It is apparently not painful. They just stick them in the wound and cover them up and let them do their thing! Who knows. At any rate by March 21st if the Iodide hasn't worked P- wants them to use Silversorb or Hydrogel.

The wound is 7 cm up and down my leg and about 4 cm wide. There is some concern about some redness around the perimenter of the wound as apparently it has increased somewhat. So p is keeping an eye on that. It's quite deep - apparently very close to the bone. All this from a fall down the stairs. Sigh. Yes I know. I could have broken my neck and I am grateful I didn't. The fall happened February 5th - today it is March 16th. And it hasn't started healing. There is yellow slough and I gather black eschar - all necrotic type tissue. I really can't look.

Update on my Leg‏

Yesterday after much prompting from p (two days) I e-mailed Dr. L and said I had been having trouble breathing so had increased my prednisone from 10 mg to 30 a day. I also said that my leg was still bleeding/oozing through the dressing and should I be worried about that. He said the prednisone was what he would do and to run with it. Then he suggested I might want to come in to see the wound nurse. Who would have thought there would be a wound nurse?So we came in this morning. Accidentally slept in til 7 because alarm didn't go off. The nurse's name is Pamela and she was really nice. She has a good poker face too. All she said was something to the effect of "oh my". Dr. L was more dramatic! He said something to the effect of "oh my god!". The frown was somethong to behold. Then he said "and you wanted to wait?"They all agreed except for Pamela that amputation of the leg at the neck was necessary!Pamela said that my leg wasn't healing properly. It was trying to scab over but was necrotizing. She said she would need to remove the black/yellow tissue and would use a silver gel as antimicrobial and to promote healing. She walked p thru the procedure. She also had to use a razor to scrape the top so that the gel could get through. I couldn't feel it which was good. They are also setting me up for home health care which will be good because among other things it means supplies for the dressings are included. They were starting to get pricey. So that is an unexpected benefit. So I will probably see the nurse once a week - hopefully they can come on the weekend - and he/she will change the dressing then and assess. I am supposed to watch for increased pain, fever or red streaks up the leg as that would be a sign of infection. Pamela said it will probably still bleed thru the dressing as they are trying to liquefy the necrotizing tissue. I might notice an odour as well. Hope not. Part of the dressing is a gel/liquid to protect the good dkin on the edges of the wound. She measured it as well. It is 7 across and 4 up/down. Can't remember right now if imperial or metric.Then I talked to Dr. L again to say that i've been getting more headaches. So as I compose this I am sitting in a waiting room waiting to have another CT scan done of my head. Dr. L said there can be delayed bleeding - even though the CT scan done in emerg at the time of the fall was clear. Hopefully it will be clear again. I also asked him if he thought I might have a concussion and he said it is really hard to tell. He also checked my eyes with a light and tested my tracking of a finger ib front of my face. Assume I passed! Didn't confuse left from right at least.So another morning off work. Hoping that HR won't insist on WCB paying for it. I had asked/told my boss that I would use my lieu time and he was fine with that. However I think I need to report to HR that I went in for follow-up just in case. I don't plan on taking any time off other then what I have to for medical follow-up. After this will probably grab lunch at Druxy's before heading up to work.Long days like this r so tiring.Saturday I am scheduled for IV-IVG and the YBR crew are supposed to come for supper except C came home from work sick this morning. I hope he is ok - not just because I want to see them but because it is miserable to be sick. Get better C!

16 Years‏

Today is the anniversary of my diagnosis with CML. Chronic myelogenous leukemia. It's been 16 years and there have been so many bumps and lifts and love and learning along the way. I spent the weekend at this time in 1993 in the hospital in Brampton. It was Peel Memorial then, now the William Osler Health Centre (I think). It was notorious in Brampton for being an awful hospital but I have no complaints - even despite the way the nurse in emerg blurted out oh you're the one with leukemia. And I didn't know at that point. That's where I met Shirley who was my room mate and made friends. That's where I had a surfeit of peanut butter & smartie blizzards because there is a DQ just down the street and my mum was determined to feed me to make me put weight back on I guess! And take out from the Olive Garden - also relatively near by.And jen's reaction when I called to tell her. She said: "F@&k off". I don't blame her. I wouldn't have believed it either. I didn't believe it - should have known from all the hints Dr. Goldberg was giving when I spoke with him that day on the phone. He had called me to say there were some issues with my bloodwork and he needed me to come into the hospital for some more tests. And the real drag of that weekend - other then being told I had leukemia, CANCER - was that I had tickets to go see a taping of Kids in the Hall. Yes, that's right, I didn't get to go. But my substitute got me a t-shirt as a consolation prize. Reminds me a little of Deb - a friend from the BMT list - she had to miss being on Wheel of Fortune. Except that she later did get to go and compete on the show. Anyway, here I am 16 years later. And there have been many good things and people holding me up along the way. And I just want to say thank you to you all because you have all been there at different times and in different ways and you have all kept me on my feet through difficult and interesting times.

The second half of Feeling Queasy Day

I just came back from my visit to the acupuncturist. There is a team of alternative health practitioners who come to the building and see patients. I had decided to try acupuncture about 6 months ago as Lee from church had raved about how it helps her. The jury is still out to be honest - but it's hardly fair to judge considering that any progress I may have made probably was obliterated when I became sick with pneumonia. At any rate, one placing of the needle in my back is still stinging - slowly abating but it's certainly never done this before. In fact, today and last week I was most twitchy and sensitive to the needles. I think I almost kicked Dr. M when she place one needle in my ankle last week - it felt like there was an electric shock going through my foot up my calf!

Anyway, enough of the health junk. Really, the second part of today has to do with job opportunities. I ran into the SVP of my former company (which is technically the same company I'm working for now, just a different branch) and I said hi, how are you and she said the same back. Then she said I saw you applied for that job - I said yes, but haven't heard anything. She said, well we haven't made a decision yet. Then she said but there are other jobs that are going to be available - possibly up to 5 other positions. We would love to have you back - you are thought very highly of (blush). I said, thank you. She then continued to explain how things were going with people finding other jobs within the company (because of the move if a person was in a role that was moving and didn't particularly want to move because it's a fair distance they can look for another role that suits them in the company with the full support of management). She did say that in some ways it's difficult because employees who have been bumped so to speak would be preferred for positions. Regardless, it heartened me immensely. So I know they will keep an eye out for my applications. I would really love to transfer there as it would cut my commute to 20 minutes or so. Much less then the current 2 hours I'm commuting! Not to mention I would be working with a good portion of my old team again!

Time will tell!