Saturday, January 25, 2014

Light & Dark

I'm sitting in the sun, moving the chair as the light scoots across the sky, and it feels sooo good, but not quite enough. I almost want it to scald me, like when I turn the knob to the hot water in the shower until it bites - yes, I really do that. It doesn't help my dry, itchy skin, but it soothes me for a few seconds , and so I continue to sit here, wishing there was more warmth and more light coming through the panes of glass. I hesitate writing this post because I'm depressed - mostly from the lack of light & warmth in my world of winter inversion - but also because I'm carrying some heavy burdens right now. Emails & texts have gone out (phone service is still sketchy), but everyone has their own weight to carry and I don't want to make this a sob-fest. So, I'll move my chair one more time before the sun goes behind the house across the street & I"ll resist crawling under my fleece blanket on the couch until I've finished this post. No more complaints for now. No more to say. Today's sob story ended.

I went to see Dr. Adler at the University last Thursday. My memories of him from two years ago we're not that complimentary; I thought he was blunt, hurried, and a little too high-and-mighty. This time, he came into the room cheerful, personable, concerned for my well-being, and ready to shake my hand. What a pleasant switch! We talked about my Whipple surgery and the symptoms that brought me to his office this time. We talked about the effect of having one-third of my pancreas surgically removed & how that relates to my symptoms now. We talked about my Creon prescription and how it should help my body absorb nutrients, digest food properly, and get rid of waste normally, none of which it was doing effectively. He asked if I had been told how to take the pills and I admitted that the only direction I  had received was what was written on the prescription bottle: Take 2-3 capsules with every meal and snack. He said, "When are you taking them?" I told him I usually take 2 after every meal. He shook his head. "That's the worst time to take them." He further explained that if I'm taking the capsules AFTER a meal, I'm already playing "catch-up", and because of my shortened bowel, the food has already moved quickly through the tract & is pretty much "on its way out" before the Creon enzymes can take effect. If I take them BEFORE the meal, the enzymes are ahead of the food & have no positive action in digestion or absorption. The ideal method for taking the enzyme is to have 3 capsules at my plate: take one before I start to eat, take one midway through the meal, and take the final capsule right as I finish. "Even waiting 10 minutes after a meal is too long," he said, which is what was happening 90% of the time. No wonder I wasn't getting any relief after taking the capsules! Dr. Adler said he was amazed at how often people were NOT told the proper way to use the Creon. Someone is falling down on the job somewhere! He said he expected I would feel more normal within a matter of days. Wow! Already there is a dramatic difference. I'm very encouraged. He also showed me the latest CT scan of my pancreas and just what the "cut end" looks like. He said that if this proper way of taking the Creon doesn't work, the next step would be to investigate if that "end" is properly sealed. If it isn't, it could come down to being surgically repaired. But, Dr. Adler (and others, including myself) has only good things to say about my surgeon, Dr. Scaife, so that is a very remote possibility. Thank goodness. I certainly don't want another pancreas surgery in my lifetime. I go back to see Dr. Adler on March 4 to see how things are working out.

That was definitely a "good news" day & I needed it desperately. It was a sweet answer to prayers and I was very grateful. It was a ray of sunshine and a burst of warmth that offered some relief to the gray, hazy skies that even the sun can't penetrate. Tiny drops of mercy (and this darling 6-month old!) are keeping me going...

Saturday, January 4, 2014

Something Right

When the phone rang the other day and Caller ID said, "University of Utah," I answered it and held my breath. It was Dr. Shami, at last! (Isn't it great that some of these doctors still make their own follow-up calls? I love it.)  He apologized for taking so long in getting back to me with the results of the bone marrow biopsy & explained that they had tried to run EVERY test to rule out what could be causing the low blood counts. Ultimately, they found NO melanoma or leukemia or Myelodysplastia in my blood marrow! The chromosome testing also came back normal. Normal! It gave me goosebumps! Dr. Shami did say that there was not a lot of tissue in the biopsy to test for someone my age, but he attributes that to my recent chemo & radiation. He also admitted that he has no explanation for the low blood counts, other than that those same treatments have depleted the counts substantially, and that, hopefully, they can be built up again. He said to continue my follow-up visits with Dr. Grossmann, but that there wasn't anything going on with me where his services would be required. I said this was good news, and he said, "Yes, it is, it's very good news." I am so relieved.
Still waiting to hear about my stomach bloat, but the worry-voice in my head isn't sounding a blaring alarm right now, so I can be patient. For now...
Here are some pics from the holidays. They make me smile! Avery decorating a gingerbread man on Grammy day, Jane & Ally in front of one of the decorated shop windows at the Grand America, and lunch at Spagetti Factory with Knox & Silly Olive!

Wednesday, January 1, 2014

Happy 2014

First day of the new year! I didn't roll out of bed until almost 10 AM, even though we were fast asleep by 1 AM this morning. Just ask Janessa - it was another boring New Year's Eve with a movie, Papa Murphy's pizza, watching the ball drop in NY Times Square, and a goblet of "bubbly" (sparkling cider) at midnight. She would have much preferred hanging out with someone - ANY one other than Mom & Dad - but such is life. Maybe next year?
I am grateful to see 2014. There was a time (March 2011) when I didn't think there was anything beyond a few months at most. But today, sitting here in my jammies, with a tummy full of omelet, watching the Rose Parade, I believe anything is possible: the promises of 2014 - with a new baby grandson in February and all the rest - to the promises of 2015 - with Janessa's graduation from high school - to everything that follows. I feel okay. My nagging questions come from not knowing, whether it's the endless waiting for test results or wondering how we can afford our medical bills & still plan some fun family times - that's what weighs me down. 
I'm still (3 weeks later) waiting for the results from the bone marrow biopsy. I've called Dr. Shami's office twice & still no word. I called Dr. G's office yesterday because I had questions about what I feel is a bloated stomach (weird symptoms) & they're going to help me talk to someone more knowledgable about the pancreatic enzymes I take after every meal, which don't seem to be working as well as they used to. More waiting... The lack of information does seem to lean toward a "non-serious" prognosis, but I can't quite believe that yet. I make excuses for the holiday bustle keeping normal business from moving forward, but not sure that's correct. Everyone wants to know if I've heard anything yet - believe me, you'll know when I know. I'm also still waiting (7 weeks later!) for my new contacts, but don't get me started on that fiasco. It just makes my blood boil!
I loved my family time this holiday season. Spent "Grammy-time" with all 7 grands & it was heaven. Wish we could have done more together (sometimes my energy and the cold temps & bad air quality outside keep me inside my "cave" like an old sleepy bear), but I treasured the precious moments we did have. I have a fantastic family. I love them dearly.
I pray for a wonderful year ahead. I pray for more hope, more miracles, more good news, more strength, more laughter, more love, more patience, more hugs, more spiritual experiences, more happy memories, more comfort, more courage, more answers, more dreams coming true, and more joy in every day life.