Setbacks and Triumphs

This delay is another indicator of a setback that occurred on the weekend, which was the time that my two friends Leann and Vicki would trade places with Pete so he could spend time with the kids here in Ottawa. The family had a hotel nearby and other than visits with me, which were awesome and often teary, the kids had fun in the museums and IMAX theater. I was back in 5 West with Leann as my caregiver, who also happens to be a nurse, so she really knew what was going on. She took me home and we had some good girl time until I noticed on Saturday that I was suddenly experiencing double vision! Back to the hospital, back to more tests, CT scan and MRI, all clean. Everyone was befuddled by the phenomenon. After Leann left, Vicki, coincidentally also a nurse, stayed in the hospital with me. Other than the double vision, I was doing perfectly fine. Of course, this was another weekend so all the main docs were unavailable.  But my crafty nurse Colleen pressed to have the neurologist come by to see me on Monday afternoon since the double vision had abated. Finally the doc came and said that this is actually one of the side effects of too much Tacrolimus, the anti rejection pill I must take for a long time. She ran the gamut of neurological testing, nerve reflexes, eye co-ordination, etc, and then I was free again!

The kids were here and we had much of the day together while Pete and his mom had some museum time. Vicki took the kids down to the pool which is quite nice, but alas unusable for me. Skyler, ever the logical numbers man, constantly calculated how late they would  have to leave to get back to Wolfe Island and how much time we had left to snuggle on the couch. He was suddenly full of other questions too, about marrow and immune systems. It’s a joy watching him sort things out in his head. He had also calculated, based on the calendar he made at home, that April 1 would be the earliest I could come back because Pat is going to England for a bit, so Skyler is now wondering who will watch them if I am not there? I was so tempted to say I had better news, but this is unpredictable; I would not want to disappoint them with a false alarm.

As it stands now, I am “out” since Tuesday, and won’t be back till Friday, when I go to a different clinic as “out patient”. If everyone is pleased, it is very likely we’ll get the go ahead to come back home! I will need to return once a week for check ups over several weeks. I have no fever, just can’t eat. My appetite is shot and sometimes I can’t keep food down. I also need to drink more liquids to keep flushing out the crap but it fills my stomach and makes it non conducive to eating solids. Now I am eating lentils a few at a time, just to get something into me. Breakfast is my most successful, when I have oatmeal and banana with milk. But even a bit of apple pie puts me over the edge. The tastebuds are still malfunctioning, and will continue to do so until I get weaned off more drugs.  One of the best things of note is that my WBC reached 3.0, the highest they’ve been in years! It’s a bit daunting not knowing what’s going on daily now that I am on the outside, but I trust things will continue to go up. If they weren’t, I wouldn’t be on my own. I just have to use mind power over taking meds and eating food. Pete said  consider the food to be like medicine, which technically it is, so it forces me to just get down what I can. Now that I am here, it is my responsibility to regain my strength.

Unfortunately, for some reason, when I am this energy-less and mentally fatigued, I don’t turn to the things I brought with me to inspire healing, the more esoteric ones. The talismans I brought and my vision board are below. I guess knowing they are there is comfort enough.

From left to right, the box of well wishes collected from the benefit in Kingston, a crystal, a bowl of healing stones, a Tibetan singing bowl, a candle, an angel star, my Trekkie bear.

My vision board for healing.

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10 thoughts on “Setbacks and Triumphs

  1. Hi Sus and Pete, Glad you had a great visit with the kids. I’m sure they miss their Mom and Dad a great deal and can hardly wait till you’re both home. That’s great your WBC is increasing. That’s proof it’s really happening!! I liked your vision board and the small special items you brought along to help boost your well-being.

    It really does sound like you have an excellent support system in place. Lots of people are here for you.
    Now , I guess the focus will have to be on eating and giving your body some energy. Day by day. Do you like soups? Maybe that health food restaurant/store you mentioned before, makes fresh soups ? It might be the ticket?

    I’m sitting in Hong Kong airport right now. Not much is opened but because I have a 4 hr stop over, things should begin to open up real soon. I’m looking forward to coming to Canada, though I hope it doesn’t snow too much! I’m not well prepared for the cold.

    Take care and I’ll keep following you through your blog. Hopefully I’ll be able to see you! You’re getting stronger. Big hug!
    Love Bernie

  2. It sounds so promising – especially your WBC. I hope you can come home soon. That would be the best medicine I think. Best wishes on your continued healing.
    Carolyn

  3. I do love that picture! Sus is strong and happy. Skyler is looking at his mom with the giddy smile that is exactly his, and Jess is sinking calmly and happily into her mom with the smile that is all hers.

    Best medicine indeed.

  4. Wonderful news on your WBC – and – fantastic! – you may be coming home soon. Thanks for sharing the beautiful pictures and stories of your healing. Matt & I send waves and waves of loving vibes your way.

  5. I too love those photos!, as well as your continued improvement despite baffling and frustrating setbacks and stand-stills (just thought I’d make that up). Oh I just remembered: the word is plateau I guess; I’m thinking about the difficulty with eating. I like the thinking of food as medicine. That seemed to work for me when I had mono a while back. – Here’s wishing you continued nourishment in small but potent doses!

  6. so stylish… so strong! You continue to amaze me!! Excellent news about a possible return to home. Yippee! I am just back from a 3 day overnight trip with 135 Grade 3 students. Successful, yet exhausted! Thinking of you from afar… keep up the good work.

  7. So glad you got to spend time with the kids. Great shot of the three of you. Hate being so far away but glad you’re keeping up with the blog. We are off to Thailand in a week, spring break. Before you know it, the summer will be here and we’ll be at Bob’s. Thinking of you. Sending out positive vibes.

  8. Hi Sus- Great news on your healing. You are AMAZING! Thanks for inspiration and for sharing. Thinking of you!

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