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I am writing today from the comfort of my cushy couch, a fabulous cross breeze, a swath of sunshine and the everpresent sounds of birds twitterpating and frogs doing whatever is their equivalent of twitterpating.  It is summer, has been for a few days, yet it is only the first day of spring. Last Friday we were hoping at my appointment to be able to go home but the docs needed to sort out my tacro levels so we stayed through the weekend and on Monday made a road  trip to Wakefield, a beautiful little town just a half hour from Ottawa. We were certainly not dressed and I was concerned for the blazing sun, which I am to avoid for a year, so Pete zipped over to Tigre Géant to find me the biggest floppy hat ever invented. We sat at a patio and I had a few spoons of chili and some ginger ale. Then we drove ove to examine the covered bridge painted fire engine red. Lovely. That was all I could handle so I went to bed early hoping to be bright eyed and bushy tailed enough to convince the doc the following day (Tuesday) that I was ready to leave.

It may have been the hoodie that I not so surrepticiously kept on when they did my weight, but it appeared I had gained a pound, and that made them happy.  Katie, who is the nurse coordinator for outpatient (who I incorrectly identified as

 

an inpatient nurse, whose name is actually Linda), walked me through some things about going home. The dog is not a problem, even if it licks me, which I avoid at normal times, stay away from dirt, avoid crowds, etc. We talked about my fluid levels and how if necessary I could get home care from KGH to do that for me. Any strangeness, fever, etc, call Ottawa first. They will liase with Kingston, so that makes me feel safe, in case I need to get a quick antibiotic drip. Then Dr H came in with the big news, my WBC had surpassed 6 and my RBC were at 133!! Platelets still lagging behind but in the safe zone. He indicated that at this point hydration is more important than food, so if I don’t feel like eating, which is most of the time, that’s OK.  We had one more prescription to pick up before going to pack as much as we could and get the rest on consecutive Tuesday clinic days when we’ll drive up for the day.

While we were getting ready we were awaiting a short visit from our friend Bernie, from Balikpapan days. Her son, who Pete and I both taught, just graduated from engineering at Queen’s!! Feeling older now…. We left Ottawa around 1 and rolled into Kingston just before 4. We had an elaborate plan to avoid letting the kids know, but as we pulled up to our meeting place at Kev and Sal’s, it was obvious they had a sense of what was afoot, and they happened to be right on the curb when we appeared. If not completely suprised, the kids were definitely pleased. Jess had dance and two meetings for middle school, so I didn’t see her again till 9:30, but Pat drove me and Skyler home on the 5pm, and I saw no one on the boat I recognized, so my arrival was appropriately anonymous.  The house smelled great, everything smells great. No chemicals, no Javex. Just fresh country air, a dark night compared to lit up cityscape, and frogs to lull me to sleep. I was a bit nervous last night, however, when my temperature persisted in the yellow zone. It really was warm out, even with the window open, so I pushed off the covers and willed myself back into the green, which I did successfully. It would have sucked to come this far and end up at KGH. They have crappier beds.

I am still, and will continue to be, exhausted, so I lie down to read or have an actual nap. I have discovered so far two foods that taste normal: watermelon and cantaloup, so these are foods I ask for regularly. Today my favorite cereal didn’t like me. I guess I just need to snack on whatever is available and palatable. My internal clock woke me at 7:30 and it was great to be up with the kids before school.  “So,” Skyer needs to clarify, “when we get home from school, mom and dad will be here?” Yes. They must be so happy. And Lily, who has seen me less than Pete, zoomed straight for me when she came inside, but it was nothing compared to the whining and whimpering she did over Pete when he and Jessie got back later that night!

I just passed the third way mark, and will continue to count the days. Katie cautioned me that this is the “honeymoon stage”. I was not ready to find out more, other than it has to do with signs of graft vs host disease which could be anything.

So today is a day for unpacking (maybe), resting, counting my blessings. I feel the rebirth just as the Earth is going through hers how. If we stay in sync, we shall power on through the year.

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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.

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.

Living On, Behind and Beyond the Edge

I knew I  was in trouble when nausea began to fill my thoughts. Usually when I am in some kind of trouble, my subconscious mind would dredge up a song specifically for this occasion and provide me with a soundtrack to help me deal, recognize a theme, create a mantra. But when the nausea remixed itself into that Lady Gaga song, “I’m on the edge… of nausea…”  became my Song for the Moment, I was doubly praying the drugs would kick in.

This morning I was delighted to hear Bruno Mars’ The Lazy Song. I could mention others, parodies created in my semi-conscious state that come into being when heavy duty drugs and me get together. Hallucinations visual, verbal and tactile, false memories and periods of lost time, even stuff I write that comes out like kloikrkk or fmmfgsm or [[[[///{{{h. I’m always disappointed that it isn’t something profound or prophetic. Perhaps some wisdom of the ages or channelling from Pleiadean elders. This would account for some of the expressions in my pics.

I have probably mentioned other side effects brought on by this stew, much of which is related to fine motor skills and lack of comprehension of even the simplest of things.

It might be the dry air in here but I also find my eyes get fatigued often and I have to rest after a few moments, leaving me open to the kind of gibberish mentioned above. Sometimes I see things moving in my peripheral vision. Most disturbing if not more intriguing are the episodes where I feel someone touching me– a hand on the shoulder, massaging my toes, poking my thigh. Very interesting, indeed.

Day 14!

Now that we’re at Day 14, we’re also at an important milestone, just 2 weeks with my new marrow. No fireworks, no lucid dreams about the other side. Other than create sores in my GI tract that come up through the lining of my mouth and outwards, like a lip augmentation gone bad, says my Latina friend, Elsa, and no Popeye breakouts.

\It took me two hours to get this little post this far. The Lisa Rinna lips never made it. My own are too scary but you might see them if I ever get to that point.  In the meantime, here’s my newest, routine. We’ve been in 5 West since the pain in my mouth and  throat  got to be excruciating. No fever, but normal BP and increasing mental dullness and pain.  If I can’t get food down on my own, I weaken and out come the eating tools and “incentives”.

Pete tried to help me cut my hair really short that evening when I started getting clumps beween my fingers. But to be honest,  I wanted this part of transition to be mine. Losing my hair was mysterious to go at it on my own, and sitting on the bed with a bucket for hours of transformation was therapeutic. Re-watching some bookmarked YouTube videos about fake hair I learned that they are for women, by women, who have such compassion. Though most of the wigs now made are from a special synthetic, others are still made the old fashioned way and all are stunning and suited to all tastes but mostly it was Leann’s visit that gave me the strength that only girl bonding could offer. She had left Kingston around 7pm and after a short follow up, Pete was sneaking back to the Island so Friday morning he would jump on the kids’ beds and ask who wanted to go skating! They played hookey Friday.

Here’s what we did!