Pain and Celebration - Day 76

Just after my last post, I started experiencing pain in my stomach along with diarrhea and had to visit the clinic for fluids, tests and assessment. Dr. Brown's instinct was that it might by GVHD starting. By the time the tests were all back on Monday, the pain had eased significantly, so I just needed fluids and an increase in one of my stomach medications. While the docs aren't sure what the pain was, Dr. Brown was happy his instinct was incorrect this time.

Unfortunately, the timing of the pain cancelled our birthday/anniversary dinner plans. We instead visited the boys on the weekend to get some twin-time in. The boys are getting so old now, and Davis even spotted my twisted face when a wave of pain hit me - his little face with a furrowed brow and "you ok?" was enough to heal me!

Last week I continued to get stronger and I actually feel some marked differences. Mom and I made 2 laps around the loop at the house and I was able to visit some friends without being completely out of breath. I even got over to Tasha's, as she was back from vacation, for some much needed catch up.

On the weekend, I had some family friends visit me - Ellen from Regina and her daughter Amy, who flew in from London (UK) after living there for a year with her husband. I lived with Ellen and Amy while I finished university in Regina years ago, so it was wonderful to visit with them for a day or so. We had so much fun I forgot to take pictures!

Last night, we celebrated Dad's 60th birthday a day in advance, at home, with my brother, Dana and the boys. It was pure entertainment with Davis' dancing and Jack's comedy, surely better than the dinner we had planned.

I am off to the clinic in an hour or so, and I have no doubt that my numbers will continue to look pomising. I'll be happy to report that how I feel is starting to move in the right direction as well. Thanks for sending me the energy and prayers - it seems to suddenly have kicked up a notch!

Celebrations bring small improvements

I'm happy to report that I feel a wee bit stronger than when I last posted. While I'm still challenged by the same side effects, I puff a little less out of breath, can again walk the loop around our house, and haven't lost weight the past few days. Perhaps its all the Olympic fever motivating me! Of course I know it's more likely the continued energy I receive from everyone each day.

While I was disappointed that my plans to go to Tasha's cabin in Saskatchewan had to be deferred, I was lucky to have some of Saskatchewan come to me. Shelley Boyd and her mom Marilyn came to visit me and mom (and dad!) for a couple of days. Shelley lives in Montreal but was back in Regina for a while, so when my plans changed, she and her mom made quick plans to fly to visit us. Our moms have been friends before we were born, so we have known each other forever! While the time was too short and activities were limited to sitting, visiting and eating (and a few naps for me) - it was really awesome to hang out with old friends and feel normal again.

Monday was Day +60, a milestone for the trial, so I was at the hospital getting extra tests and bloodwork, as well as some follow up yesterday. The numbers continue to look good and the doctors are happy. With that news and the feeling I am making small improvements on the strength side, I am happy too.

Friday we're hoping to celebrate Mom and Dad's 40th anniversary (Aug 3rd) and Dad's 60th birthday (Aug 27th) and go out for dinner with my brother and Dana (babysitter pending). Since neither Mom nor Dad wanted a big party we decided to send them to a small island - Maui. Actually they had already planned to go in January so we just made it a gift instead! Not that creative but they love Maui so why risk it!

So I'll deal with my shakes, aches and fatigue...there's too much else to celebrate! I hope you enjoy every summery day before they're gone! Cheers

Day +51 Good on paper

I realize it's been 2 weeks since my last post. While overall I continue to do very well "on paper" as my doctors say, with normal blood counts and no reason to suspect any GVHD or infections, I am definitely far less strong than a month ago. I have lost a considerable amount of weight and am short of breath at the slightest amount of activity. My attempts to drink the required amount of liquid each day have not been consistently successful, so my visits to the hospital have increased to get liquids intravenously to supplement my oral intake. My tacrolimus (anti-rejection drug) dose has had to be increased in order to keep it in the range the doctors feel gives my enough protection from GVHD. With that of course, comes increased shakiness and itchiness. As well, with the weight loss goes my muscle, which increases the weakness, which increases the tiredness, etc. It's a bit of a vicious circle.

I do not want to sound like I am complaining, I just want you to keep you updated and realize why I haven't been blogging much. The doctors are very happy with where we are at, on Day +51, and let me know that I set a record on Unit 57 for "shortest inpatient stay post-transplant" which is remarkable as this was my 3rd and most of the other patients were on their 1st! Probably the tacrolimus dose, which was 0.5 on Day +1 and is now 2.5, is just starting to kick my butt a bit more than I had expected.

Despite the side effects, I have been able to see some friends and family during the past two weeks, which of course is a wonderful source of healing. A month ago, Tasha had invited me to "chill" with her family (and celebrate being done her radiation and herceptin treatments!) for a few days at Regina Beach next week, and so I booked a flight for this coming Tuesday. Based on how I am feeling now, unfortunately I had to change my plans. The good thing is it's Westjet, so I can use the credit later with Tasha!

So I'll get back to my quest for an easy liquid to drink, and attempts to get this strength thing turned around. I appreciate all the support and energy - I am sucking all of it in! Thanks again. Cheers.