Well I am at the Cancer Clinic tomorrow for a series of tests. I guess “cancer clinic” and tests says about all it needs to.
The cancer they are testing for is almost “always fatal” according to the literature I have read about it. The good news is that if it is found right away, it can be cured. The bad news is that I am well past “right away”. From what I have been told and read, the symptoms I am showing are consistent with both a type of cancer and this long term infection. In 4% of cases, it is cancer. Since it is a fast acting cancer… well you get the drift. While there is a 1 in 25 chance that I am screwed, there is a 24/25 chance that I will be okay. Of course with it being election season, the margin of error is…
To be blunt, I don’t expect them to find cancer but something is wrong with my ankle and foot that is beyond the infection. I can feel something in my ankle. From what I have read and been told, ankles kind of mutate when they have a bone marrow infection, so it could just be that.
That being said, if they tell me I have cancer in my leg, I’ll be be able to say…. well I don’t know what I am going to say. Nothing witty comes to mind right now. I’ll have a witty line ready for Tuesday.
As for around here, the focus will always be on next summer. Wendy wrote up our plans for 2016, which is to spend about 10 days in a rustic Banff National Park campsite and use it as a basecamp to explore a lot of trails around Lake Louise and Banff. We picked out a 2 person hiking tent for next year and I intend, well hope to use it.
Well I survived my appointment with the surgeon with all of my limbs still attached. A lot of you were asking questions so here is what I know.
- The treatment with the wound clinic has been ineffective (I knew that… all they did was change a bandage and lecture me most days for things out outside of my control).
- The test results show that the infection is taking a serious toll on my entire body. Part of the body is fighting on, other parts have given up. It does explain why I go to work, come home and nap until the next morning. It also explains why I haven’t been that social this year, I am so tired all of the time.
- Part of that is that I am probably now a Type I diabetic. I know this is warped but there has been so many other serious things, this doesn’t seem to be a priority for anyone. The infection drives up my blood sugars which exhausts me. Part of the problem is that to figure out what to do with the diabetes, the infection needs to be brought back under control.
- Treatment is going to be long and unsurprisingly, expensive. The treatment the surgeon wants to try isn’t covered under healthcare in Saskatchewan. Some basic research yesterday shows that it is in other provinces but not here. That makes sense because it works and is faster than what we cover in Saskatchewan. I can’t remember if I file this under lean or the New Saskatchewan. Either way it’s ridiculous because…
- Everyone I deal with at the Saskatoon Health Region seems shocked and bothered that I am still working and not laying at home on my bed waiting to die. Believe me, every single morning I was wake up and say, “I feel like death” and “I just want to stay in bed” but staying in bed causes a lot of pain while being up and about does not. So I try to get an appointment where I can get treatment and then go to work. I get told, “well the seniors like those early morning time slots”. I understand that being retired is hectic but seriously? I try to get treatment after work and am told, “We don’t offer that treatment in the evenings.” The best is when I am scheduled for a treatment and am told when I get there, “Oh, we only do that in the morning and at a different facility.” Or they don’t call me but insist they did. Or I show up at appointments and am told that I cancelled it. It is not a lot of fun dealing with CPAS and it is even harder when you are trying to keep working….
- I get asked all of the time if they are going to take my leg. I don’t know yet. Some doctors are more optimistic then others. What we do know now is that antibiotics aren’t killing the infection. When I am on antibiotics, the infection is at bay but as I saw this week, the infection literally moves up my leg in 24 hours after I am off it (I am back on them now). I also am told that there will be surgeries in my near future and there will be a lot of them.
- So that killed the hope of hiking to Grey Owl’s Cabin in August. I know this is stupid but that makes me incredibly sad. You have no idea how badly I wanted to take that trip with Wendy, Mark, and Oliver. The new treatments were going to start today. Since we had planned to leave for Calgary at 6:00 a.m. on Thursday, those treatments are starting next week when I get back. Wendy and I had talked about her taking the kids to Calgary herself if I needed to stay behind but I am hopped up on antibiotics that will keep me going until I get back. Without them, I was told I would have been hospitalized in Calgary which is why I was nervous about going. As the doctor said, I have a long and hard road ahead of me, a vacation right now is a good thing.
- I appreciate the advice that EVERYONE is giving me and that is that I go to the Mayo Clinic. Umm, I have about $200,000 equity in my house. Wendy and I have looked at re-mortgaging to do this but to go down, it would take every bit of money we have and then what happens if it doesn’t work? I bring up the costs for just a week of treatment and people’s jaw drop. Let me be blunt, the Mayo Clinic is for the wealthy. Wendy and I are very middle class. Throughout this I am realizing that people see the Mayo Clinic as their last hope. If everything else goes bad, there is always the Mayo Clinic and “those” doctors can help you. They may be able to do so but only at a tremendous cost that most of us can’t afford.
After being assured that my latest batch of antibiotics would work on killing the infection in my leg. Taking the antibiotics via IV was supposed to give me a deeper penetration and therefore kill the infection fully. I finished my last batch of them on Thursday (and out came the pic line) and things looked better. Last night I told Wendy that I could feel the infection return. This morning I could see that it had and it is currently moving up my leg.
Tomorrow I have a doctor’s appointment with a vascular surgeon and we will talk, umm, options for what to do next. It’s not going to be a fun appointment.
My white blood cell count is normal which means that my body has just given up fighting the infection. My protein count is supposed to be 7. It’s 150.8 because of the infection and inflammation. Not only that but the ulcer on the bottom of my foot is bleeding horribly this morning after months of improvement.
So I am off to City Hospital for treatment of the ulcer. Then I am going to head downtown to shoot some photos and deny what is happening. This afternoon I am off to Don’s Photo where I am going to calibrate some lenses for Mark and I before returning home to battle the coming chills and fever all night.
I hate this. I just want it to end. Hopefully I have two legs at the end of the process.
After three days of sleeplessness, fevers, and chills I went back to St. Paul’s Hospital. The cellulitis had gone from my ankle up my calf and almost to my knee. As of 5:00 a.m. this morning, the infection was winning.
So the plan was to be at St. Paul’s by 6:00 a.m. We walked in, saw triage and was given a bed right away. I was quite pleased with how fast this was going. I expected to be home by 10:00 a.m. Since the teaching is done at RUH, it meant no interns, no residents and just a doctor.
So the nurse saw it, gave an expected course of action. The doctor saw it, affirmed her course of action. He ordered blood work. The blood work came. I was rolling along.
The white blood cell count came back as normal. Which was kind of odd since I have this chronic infection. The C-Reative Protein test came back. I did well in it. It was supposed to be around 7. Mine was 150.8. Beat that folks.
So they gave me a dose of IV antibiotics and then I wait until 3p to leave. I had to see Home Care to get me to agree to give myself an IV. Then they made me sign off on giving me my own medication via IV. Then they taught me to give myself medication via IV but not really because I already had it. I did get an instruction guide.
Oh yeah, they put the IV into my hand. Not only do I look like a hardcore addict but you type with an IV in your hand (of course I can inject heroine into my hand if I ever decide to take up drugs).
I think that was the biggest frustration, I asked them several times to keep the needle out of my hands for work and they stuck into my hand because it was the easiest place for them to jab a needle. Actually they seemed amazed that I would be working and not at home. Like I have written before, some of us need to work, especially with an illness that has no end date right now.
Then I was allowed to go to City Hospital where they gave me boxes and boxes of medication. I have more gear then a safe injection site (and with my hand, I look the part).
- Since the start everyone has been saying that my leg is a vascular issue despite the vascular tests being largely normal. I have been saying it is an infection. It’s weird, I have had a few doctors look at my leg closely and none of them have thought it was cellulitis when it clearly was. I am sure this happens lots but doctors appear to “thin slice” to use Malcolm Gladwell’s term.
- I have a problem with what the hospital charge for parking. It cost me $18 for a day of parking and it wasn’t like it was I was there for a party. That is obscene and taking advantage of people.
- Here is something else that blew me away today. Everyone in emergency today was on a waiting list for a specialist and their condition had deteriorated to the point where they were sent to the E.R. (we had time to chat).
- I am not really that comfortable injecting myself with an IV medication everyday so I asked if I can come in and have it done. Nope. My choices were inject yourself or have a nurse come in on their hours (which doesn’t work for my schedule) and they can do it for you. I can’t go to a clinic or hospital to have it done. I just want a time and I’ll be there early but nope. I don’t know why this can’t be done. So this is patient centric care in Saskatchewan. Do what you aren’t comfortable doing because it’s cheaper and you have a piece of paper.
- Cellulitis hurts. Badly.
- I don’t know if this is going to work. Every treatment they have tried so far “is going to work”. It’s been 8 months and I am getting sicker.