Over the Hump?

Where to start? This blog took a siesta while I was stuck back in the In Patient wing of 5 West. I felt crappier than usual, my throat  hurt to swallow, I was exhausted and sleeping constantly, waking every few hours from fantastical to maudlin dreams, then back to sleep again.  All this time I was being monitored, so the feeling of safety was there and it was good. It also meant unless we were prepared and had food handy, I had to rely on hospital “food”. I can’t tell you how many times I was given “high fibre” cereals for breakfast. Think about it: everyone on this ward is neutropenic;  being on immune suppressing drugs, we are all suffering from poor bowel movements. And don’t even get me started on the salads– briefly, any “natural” food from handling to serving can come into contact with bacteria, which would be Bad. I mentioned this to the dieticians and they wondered too, about both this and the high fibre cereals, and both agreed these were good questions. Then they pushed more Ensure and Carnation Instant Breakfast. I was told a few times if the diarrhea doesn’t improve and I can’t keep food down (due to so many drugs causing nasuea) they would have to keep me here. It was a hard battle. One day I had what I call a “dud” nurse– no disrespect, she did her job but didn’t keep me up on the antinausea pills and really wasn’t at all that personable, certainly an anomoly. She told me mid-day if I promised to eat something at home and drink more fluids, and if my pain was manageable, which by now it was, I could go home.  Yes please. I started to pack up and she got the papers going, got permission from the head nurse, and I got out of there as fast as possible.  It felt like a self perpetuating system of sabotage to me– bad food and too many drugs are bound to keep you in longer.

But the nurse I had today was AWESOME. She was thorough, perky, but not too much, knew of Wolfe Island because of the Kraft Hockeyville we competed in together last year (and for which we won a freezer and shelter for our new ice rink), asked questions and made recommendations like she was one of my doctors, and pressed for the reduction and ultimate removal of the pain killing patch to reduce my nausea.  Generally speaking, all the nurses are awesome but this one was special. I look forward to seeing her tomorrow!

So now I am out, baby, but before I go on, I should mention the first few days here were honestly a challenge and I slept through most of it or wandered about in a daze and very monotonic, making Pete I’m sure worry and feel quite helpless. We were excited to see the CBCs go up and this was encouraging to all but it was an encouragement I simply could not express. Today is the first day in weeks I haven’t felt like sleeping all day, kept food down (except when I was writing earlier about hospital food– perhaps subliminal?) and actually felt like interacting with others. All respect to Bernie Siegel, author of Love, Medicine and Miracles and how laughter contributes to healing, but when you’re down and out and haven’t got the energy to read a book or listen/watch something, it can be a real drag to get over that hump. So, I lead you to infer, dear reader, if I feel better now because my pain meds have been significantly reduced, I am home and eating what and when I want or because recently a few things have tickled my funnybone.

This is the first thing that made me chuckle this today:  https://mail.google.com/mail/?shva=1#inbox/135e8b6acb1a02dd (sorry, this is an email attachment that is not visible now. Trust me, it was funny. And rather sexy!)

This is the second thing that made me laugh today: http://www.youtube.com/watch?v=3qEd7DJBUqk

The third thing was actually a recount from a Big Bang Theory episode that my doctor and nurse shared after they saw I had been watching ST:TNG. Here is the scene from BBT. I think my reaction was particularly laced because I was surrounded by Trekkies!

Today I got out early, Pete got me a soft toothbrush — no more mouth sores means no more saline rinses.   In other good news, my WBC rose to 2.7!! I expressed joy but a little concern, wondering if those little guys will know when to stop!  Yes, I was assured. Thank you, April! She suggested we get some physio outdoors since it was simply too gorgeous to not enjoy some fresh air. The temperature was well above zero, maybe 12, there were people jogging everywhere by the canal where we had a picnic with fare from the Green Door. The sun, smell of the air, everything elicited a little cry of happiness. Ah, freedom.

For those not familiar, the top images are at the Rideau Canal. This reaches as far as Kingston, and this is why they say it is the longest skating rink in the world, at 202km.  Sad year for skaters this year, I’m afraid. The bottom photo is the mirrored exterior of the Convention Centre. We are in the middle of the second row from the bottom.

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16 Comments (+add yours?)

  1. Robert Graham
    Mar 07, 2012 @ 18:33:26

    Thanks for the update Sus – glad you were able to get out and enjoy the weather today – it was 16 degrees in Toronto today!

    Reply

  2. Pete Bowers
    Mar 07, 2012 @ 18:56:07

    Just wanted to add a couple of notes here. The last few days have been very exciting with Sus’ numbers rising. We did feel like we snuck out on Sunday. We were very excited that her WBC count after two days at 0.4 rose to 0.5, but I had no sense that turning into a day patient was coming any day soon. Then on Monday we were gobsmacked to hear that her WBC was 1.9! We both had to double check that they didn’t say 0.9. Nope almost 2!

    The next day it was up to 2.3. But yes Sus was sleepy and relying on those nausea pills. I kept pushing the nurses to consider dropping this “pain patch” that was great because it stopped her from needing the other pain med that had kept her in such a fog and confusion that was so miserable and kind of scary. The patch was great for reducing the fogginess (yeah!) but it reintroduced the nausea and added serious sleepiness all day. Since her WBC count was up, her mouth and throat was healing and she was not complaining of pain. The first time I suggested reducing the level of the patch, the nurse came back saying the doctors wanted to keep it the same for one more day. Then another nurse came in and I tried again. I wasn’t sure that the doctors understood that the nausea had not been there until the day after the patch. This nurse listened better and thought it was a good point. She went and talked to doctors and we got permission to cut that med in half.

    And today we got our Sus back. She described getting through this recent time as needing to be in this cocoon. That described perfectly what I was seeking. This morning, however, it was clear that cocoon was disappearing. Her laugh over breakfast at the email (above) was the first sign. I have not heard that in weeks. She didn’t sleep or rest her eyes on the way to the hospital and when we got to her room, she was sitting up. Every other day, she just put the bed down and closed her eyes. She was talking to the nurse (who really was awesome) who could see how well Sus was doing. She never took a nap the whole time, and the Trekkie talk was great to see. We even watched a perfectly timed episode of Seinfeld.

    Being able to go for a walk by the canal was amazing. Sus has come out into the world again. Wow.

    Thanks for all the support from everyone and comments in Sus’ blog. You really all crucial to Sus’ healing team. Thanks from the Bowers clan!

    Reply

  3. Carolyn Ellis
    Mar 07, 2012 @ 19:18:07

    What wonderful news, Susie, welcome back!!!

    Reply

  4. Sally
    Mar 07, 2012 @ 19:53:22

    Such fabulous news! I’m so happy you enjoyed the warm weather today. We look forward to being close to you this weekend!

    Sal

    Reply

  5. Leann
    Mar 07, 2012 @ 20:08:36

    hi!
    from Zoe
    (and Leann too! good to see you outside!)

    Reply

  6. kevin
    Mar 07, 2012 @ 20:11:25

    Sus,

    That is so great, that you got outside today is just fantastic. Fantastic!

    Reply

  7. Pete Bowers
    Mar 07, 2012 @ 20:15:04

    Oh, and one more thing I meant to get in there about the medical team here. One thing that impresses me so much about both the doctors and the nurses is that, there seems to be a very consistent and sincere seeking of information from Sus and I in order to inform their treatment. I get this sense from all of them, but today’s doctor seems particularly excellent at this. I think every time he leaves, the last thing he asks is if there is something else they can do for Sus. Today Sus asked a question about whether she can take probiotics now — something that was a no no earlier. I liked his response. He said hmm..that’s a very good question. I’m going to look into that and get back to you. He did and it turns out that once her neutrophils were over 1 (they are) probiotics are fine, but not before. There was no sense of hiding lack of confidence in an answer and a respect given for knowing to ask a smart question. Im sure that this is also whey they listened to our thoughts about lowering the level of medication in the patch.

    It is so valuable to have a team of medical professionals (doctors and nurses) who clearly love what they do, know a lot, but are also aware that they can do a better job when they listen to what their patients have to say. I’m sure that is not everyone’s experience with doctors. We’ve scored well on this count both this time in Ottawa and with the team we had in KGH 7 years ago with Sus’ aplastic anemia.

    And one final point for Sus’ international readers. I’m confident that we are receiving exactly the same quality care as a millionaire in the same condition. I can’t imagine what we would be going through if we were in the States having to think about the cost of this medical care. I have my complaints about the way things are funded in Canada and where we are headed politically, but I have to say that in this situation we are getting world class care and the only finical burden is lack of work, not at all about the cost of treatment. Gotta give credit where credit is due!

    And by the way, we’ve heard on CBC a couple of times now stories about the two doctors who discovered stem cells 50 years ago, and it turns out they are Canadian. If you’re interested, check out more on this story here http://www.cbc.ca/news/health/story/2011/06/15/stem-cells.html

    Reply

  8. skot
    Mar 07, 2012 @ 22:24:45

    Yahoos for ya Sus! (That’s like a rhyme, I think). This makes our day. Onward and outward and soon to be homeward!

    Reply

  9. Kathy Boyd
    Mar 07, 2012 @ 22:27:03

    Sus- Way to go Sus! Glad to hear the good news. A picnic by the Rideau Canal is so cool! Thinking of you!

    Reply

  10. Bernie Geddes
    Mar 08, 2012 @ 22:58:20

    Wow you’re on the move!! Nice to get outdoors!! Way to go Sus!
    Love Bernie

    Reply

  11. Ilana
    Mar 09, 2012 @ 22:01:09

    I totally know what youmean about hospital food and medicine keeping you down, as we experienced this with my mum in past years… scary vicious circles. Thank heavens you are so knowledgeable. Fresh air must have been a beautiful uplufting experience – bravo! Thinking of you and sending my vibes of strength (ha- random thought – I used this word in my class just yesterday to explain to a student why the was there… think of the family member … they were fascinated and I bet you they’ll always think now of that story and not misspell the word!!!). Hugs, Ilana

    Reply

  12. Gisele Pharand
    Mar 10, 2012 @ 19:54:54

    Welcome back to the outside world – way to go Suzie!!

    Reply

  13. chris meyer
    Mar 11, 2012 @ 12:29:04

    Wonderful to see your mask doing double duty as protection from germs and the cold. 🙂 Here’s to more outdoor freedom just in time for Spring! Chris.

    Reply

  14. linguisteducatorexchange
    Mar 12, 2012 @ 02:03:04

    Yay for you guys. Yay for better food. Yay for sunshine. Yay for fewer meds. Yay for higher WBC. Yay for probiotics, Seinfeld, TNG, and laughter. Yay for not misspelling words. Yay, yay, yay. Yay for life. My wee country church — where the pastor talks about linguistics in his sermons, and a friend and fellow seeker today whispered to me during the service, “Gina, is ‘zeal’ the base of ‘zealot’?” — continues to pray for you guys.

    Reply

  15. linguisteducatorexchange
    Mar 12, 2012 @ 02:03:40

    And yay for social medicine, for sure.

    Reply

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