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.
10 comments:
Hi Tricia,
Thanks for this latest post. Bob & I are sorry to hear that you've been experiencing some major discomfort, nasty symptons, and weakness these last two weeks and we're praying for that "Good on paper" to transfer to a state of all over well-being for you, especially an increase in strength & energy. We hope your quest, for an easy liquid to drink, finds success very quickly! It's good to know the doctors are making sure you get fluids intravenously, but I'm sure you'd much rather skip that treatment,if possible. Our thoughts & prayers are with you daily, as are our love & admiration.
Lots of love,
Mary Ellen xoxoxoxoox
Dear Tricia,
Thank you for sending this update even when you are not feeling well. Although you haven't been blogging we were confident that you were still making progress, and we continue to pray that you will continue healing. Reaching day 51 is a huge success; we congratulate you on that and on your positive outlook.
With love and much admiration, BJ
Always great to hear from you little one,
I am in Montreal on a course for a month and I sure glad that I can still connect once in a while and check on you.
You are still on the building up the energy stage and I am sending you" good vibes"
My trick for getting more fluids into my kids
was always just a little bit in a med cup but very often.Good luck in getting your requirement.At least the iv can help once in a while,I always call it MAGIC JUICE. for the kids in the ER.Hope it also does magic for you.
Sending you lots of warmth and sunshine
Dominique
If you just cannot stomach the thought of Ensure (I'm telling you the Butter Pecan is AWESOME) try Chocolate Almond milk (Almond Breeze) with some protein powder mixed in. I'm telling you you won't even notice it!
Hi Tricia,
Thank you so much for the update and your new posting.
I will start sending good, strong, even GI vibes to you. I pray that you do find that easy liquid to swallow and you are able to meet those precious amounts to maintain good hydration.
I'm sad to hear that you aren't able to use your tickets to hang at the beach with Tasha now, and I know that you will be using them as soon as you are able, like you say!!!!
Tricia, your ability to turn EVERYTHING to the good and view the world with such a positive outlook is so beautiful. I am sending you positive vibes and much love every day.
Barb
Hey Tricia!
I wish I could box you up some energy and send it your way! Know that we are sending some anyways thru our love and prayers....
You remain strong and we are so proud of you...good job on the paper work - with your great attitude and with the help of your family and friends the rest will follow :)
Cheers!!
Sonia
Hi Tricia, thanks for the update. Hey, go ahead and complain - you should be able to get away with quite a bit of that!
We think of you so often and wish for you to be more comfortable and stronger every day.
Adding extra prayers tonight!
Lots of love,
Marcia xo
Hey Trish
Great to hear from you!!!Mom and I were chatting last week about you..sending our continous prayers. we also pass on some strength and healing!!!! You have the courage thing taken care of!!!
Sheree Martin
Dear Tricia,
Though most of us are checking Tricia's Tides every chance we get, we are always amazed when you post yet another update. Far from wondering why you are not blogging, we ask ourselves how you can get past your weak and tired state to let us know how you are doing. Thank you!
We cannot imagine what it must be like to be "doing well on paper" and yet feel like you are losing ground. On the one hand, we celebrate your normal blood counts, the apparent control of GVHD and your freedom from infection. On the other, we regret your loss of weight, shortness of breath, difficulties with oral intake and the awful side effects of tacrolimus. During your surprise appearance at our July 21st gathering, we saw for ourselves the physical toll of the battle you are waging every minute of every day. Your beauty always shines through, though.
We are not surprised to hear that you set a record on Unit 57 for the shortest inpatient stay post-transplant. At the time of your discharge, I remember wanting them to keep you a little longer in your fragile and vulnerable condition. That was selfish, of course. Your amazing progress and personal determination indicated that you were ready to take that next important step towards recovery and independence.
We're sorry that you had to cancel your summer break with Tasha. Without doubt, that would have been good for both of you at this time. Like you, we appreciate Westjet's cancellation and rebooking policy. It is actually "good medicine" for us to anticipate that you and Tasha will get to use that ticket together someday.
I'm sure that many of us are thinking, "What can I tell Tricia to eat and drink so that she can stay hydrated and increase her physical strength." Of course, only you can determine that by trial and error. However, we like the "nourishing" imagery you use in saying that you are "sucking in" our support and energy. You certainly can't live on our love, but we hope with all our might that it does help you in your quest for an "easy liquid" and renewed strength.
Take good care of yourself, Tricia ... may you eat, drink and grow strong with each passing day.
Prayers, energy and love always,
Louise and David
Dear Tricia,
It has been two months since your transplant and we are hoping that today is the beginning of a third month that will see each day bring a return of strength, progress and good health to you. We continue to send prayers and good wishes your way.
Love, BJ
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