Since I am sure some people are wanting to see how I am doing rather than just read about I have decided to post a picture. My hair fell out after the high dose chemotherapy in the hospital but thankfully myeyebrows did not so I look a little less like 'Powder' than I did after the first transplant. And for some strange reason my facial hair has never stopped growing, in fact it seems like it is coming in faster than ever now...I have been out of the hospitalnow for 3 weeks and things have been progressing very well so far. When I first got out I still had to go into the Mayo outpatient every day for blood work to make sure that my counts were all stable and I didn't need any sort of transfusion. 3 weeks later and I am now scheduled to just 2 days a week because I am doing so well. I have had to have magnesium every time that I go in because the Prograf medication that I am taking causes my levels to drop but other than that all of my counts have been excellent. We did have a little scare last Sunday when I ended up in the ER after starting to feel very disoriented and dizzy but thankfully it was only because I was dehydrated and nothing major, after a bag of fluids I was feeling better and on my way back home.
Last week they ran a blood test to check my chimerisms to see what percentage of blood was still mine and what percent belonged to my donor. This would be the first test to see how well my body was accepting the new cells and if the transplant was working. After 10 days of anxiously waiting for the results Dr. Slack (one of the oncologists that was on rounds yesterday) informed me that my chimerisms were at 100% donor blood, the transplant is working! They had been hoping for at least 80% but 100% is excellent! I have to admit that I wasn't as excited when I first heard the news as I thought I would be. I think the fact the my blood was no longer really mine kind of freaked me out, forsome reason I felt as if I lost a part of me. I know it is crazy but that is how I felt at first. Of course I am very happy with the results and look forward tomore great news when they run the next set of tests in about 3 weeks from now.
Other than my now bi-weekly trips to Mayo for blood work I haven't been up to very much else. Because my body is still recovering from the transplant and my immune system is easily compromised I have been spending all of my time at home in my moms house so that I can be sure to stay away from anyone that may have an infection. So my weekdays are spent watching movies on HBO and my weekends are spent watching football and soon the World Series! It gets pretty boring at times but I need to remember that I haveto be cautious and not take any chances because any type of infection at this point could have major consequences. I have also become frustrated at times with my physical recovery because my mind is telling me that I feel good enough to workout and get my body moving but as soon as I try I get slapped back to reality by my body. What most of us may take for granted as an easy physical activity has become a struggle for me. Even a simple walk around the block has become difficult but I just have to remind myself that it is a slow process and to not give up because every little thing I do will be a step in the right direction for recovery.
Aside from the large doses of television I have also been playing with my latest toy, my Canon T2i DSLR camera. Because I am not able to really leave the house I have been doing a lot of practicing with all of the settings and different features so that when I am finally able to drive myself and get out and take some pictures I will be familiar with all that the camera can do. I look forward to getting some nice desert scenery photos while I am up here! But for now the backyard has been the inspiration for most of my shots.
10 comments:
OH my God, OH my God... we have been thinking of you all the time. Personally you are always in my thoughts, prayers and not a day goes by where i don't think of you so much... Amen to what you said about us taking things for granted - God above does give us good swift kicks in our butts to bring us to reality. what is great about that is we become grounded and appreciate each day we wake up. Never ever did we doubt the transplant would not work. Actually we are thankful to your donor to healing you and you for being the pillar of strength so your soul is healed. Dude as I always said you are amazing and because you are our strength surely you will make it. Update - Monday is an AUW bake sale (wish you were here) so we will take pics of course, Tina came back from vacation amen, Vicki is on vacation and Sue is doing an awesome job. Nora who is also awesome wanted to burn huge stacks of paper lol (we all did hahaha) (don't worry they weren't yours. Jenn came back from her honeymoon - we await her pictures. My teacher will be doing a zumba AUW one hr or easy ok super easy basic steps... Today My daughter and her bff were mc's at one of their best friends, small kids kind wedding today. Had to admit, seeing them all grown, married and children, i cried... Shot some pics of waikiki beach and the surfers (check your email) and with the warmth of the sun, thought of you and know one day you will be back in the water.
Love you tons and thank you for blessing us with your presence (you are our gift and you remind us to live in the present) Mom #2
forgot to tell you - love your pictures - been playing around with both my cameras...
Hey Alika! You know we're thinking of you, love the updates that are coming in from your Mom. U. Bob would like to volunteer to help you out on the TV confinement - he keeps wanting to graft the remote to his hand, lay in bed and weigh 300 lbs. Ha! fat chance! No food unless Alice will bring it to him! Seriously, you are awesome, your perserverence and your attitude make us all realize that the day-to-day stuff, good and bad, are a blessing because they're normal. We look forward to having you home - we miss you! Grammy left this morning for the Big Isle - I think she's planning on AZ for Thanksgiving so you'll see her before us. Brace yourself the the Thanksgiving Crazies! Love you, A. Sherri, U Bob, Alice, Coco, & Parody!
Howzit Alika!...Finally a picture of you...anyway I am so glad that you are healing and moving forward...I remember when I was trying to recover it just seemed like years to make baby step kind progress...nevertheless its progress...don't worry cause before you know it you will be walking around like normal..as another person fighting cancer you know i can relate to recovering slowly...keep up the good spirits and we look forward to seeing you back at work...perhaps as a photographer!!!
Wow, more great news! Have a fun weekend with Misty! I know how you feel about being stuck home....we've been pretty much isolated at home for the last month now, for the same reason - feel good, but don't want to take any chances of catching any "bugs." Thank goodness it's football season! LOL. Also, since I have so much time on my hands, I've started a blog for Sadie. You can check it out at sadiesminn.blogspot.com Keep up the good work! :)
hiya dude:
Happy halloween. we hardly had any kids in the complex. Wonder if it is because it fell on a sunday. ok so howz my SF giants lol. Good weekend in sports. How you doing. Pretty soon you will be back to us. Can't believe it is right around the corner. We miss you A L O T... say hi to mom them for us...
Your pictures are beautiful!!!
What a perspective you have developed on life and it shows in your pictures. Still praying for healing and restoration of your body and continued strength of your spirit.
alikaaaa!!!!! what beautiful pictures, keep them coming when you feel up to it. So happy to hear youre slowly feeling better day by day. we're all still praying for you and keeping you close in our thoughts.
Much Love, Leimomi and family
Alika, John, myself, & Sydni are participating in the Shoot for a Cure event benefiting Leukemia & Lymphoma Society next week. My work, UFCW, is a large donor & we do these Skeet shoots all over the country. Well, my office is organizing our 2nd shoot, I'm sure you remember hearing about it in 2008. In any case, as we raise $$$ on Lanai, you will be in our thoughts & prayers(as always). The more $ raised for research, the closer we get to finding that cure. Sounds like things are tough, but the toughest roads are always the most worthwhile ones.
Geppies
As we gather about the Thanksgiving table we all offer up the things we are particularly thankful for. I am so happy to again to be announcing your well being to my wife, kids, sons and daughters-in-law, grand keikis and guests. We will join hands and send you our deepest aloha. It is a joy and inspriation to read your messages and a particular thrill to see the images you so expertly record. Alika, these shots are inspiring and financially valuable so I encourage you to find a way to put them on the market. As one who has used some of the best photographers in the country I would say you have a great start and are well along the way to being recognized professionally for your work. Look into Giclee prints and selling through local galleries both in AZ and HI. You are an artist. Shooting is living.Shoot!
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