“There is always something to thankful for!”I have this sign out each year to remind me that no matter the situation it is true.
My birthday came on 11-11-11.I wanted to get out of town and asked Jeff to take me to Wendover.We had so much fun….and I knew we’d win big. (ha)I learned how to play roulette and even got the hang of craps (even though I made Jeff stand next to me when I got confused).We had a nice lunch, gambled some more and had fun.We haven’t been anywhere since I got sick so it was nice to enjoy ourselves.Of course we didn’t win any money…but it was awesome anyway.
The doctors told me they are very impressed with how well I am doing.I have exceeded their expectations!Tuesday I had another PET (full body) scan and a CT (chest) scan.The doctors said they were great scans just not “perfect”.The test showed some spots on my hips. We could do biopsies on them, but the doctors don’t think it is necessary since the treatment would be the same regardless of what they could be.I have a clinic visit this Monday and the plan is to start decreasing my tacro (immune suppressive drug) and get my stem cells to start working harder and kill anything still there.Usually this works and we’ll rescan me again in January to see if they are gone.
I still feel great and have a positive outcome. I am still having the body aches but my energy is increasing each week.The doctor gave me the go ahead to start doing more (vacuuming, dusting, bathrooms, yard work etc.) and as pathetic as that sounds….I was thrilled to know I wasn’t so limited at home.I am helping Callie’s teacher by grading papers at home and the librarian has asked me to help her recover the books in the library.The boredom isn’t as bad as it once was. (For a month there I thought I was going to lose my mind!!)
Happy Thanksgiving to all of you.Today I am very thankful for the year of outpouring of support and love we received.Stuff yourselves silly and enjoy the day! “There is always something to thankful for!”
Lester and McCall as 80's workout girls! "Feel the Burn"
We all know that October (and Halloween) is my favorite time of year. Here are just a few pictures I thought I'd share. It is nice to get out a do the things that I can. My blood pressure is low (88/60) which explains why I am always cold...but nothing the doctors are too concerned about. It does go up occasionally and better to be low than high, right?
Still going to clinic every other week which is nice. They will reduce my tacro (immunized suppressed drug) this month and see how my body handles it. So far I've had no reactions to the last reductions. :) Things are going well and I am trying to recover correctly.
Callie as a Zombie! Yiiiiiiiikes!
The kids first Haunted house.
Callie's "Spooktacular Gymnastics Meet". So proud of her! (yes, I am finally getting some hair!!!!) :)
Nothing really new to report. My blood results are coming back "normal" each week and my kidneys are back to functioning better. I only have to go to clinic every other week (still have to give blood every week though) so that is nice. I am not sleeping as much during the day, but some days I do get tired and have to lay down. I am still careful with large crowds and miss my old life. I am learning patience while I heal but it is hard that I still miss out on so much.
I am getting more hair and since I went platinum blond I've gotten lots of positive comments on it. (Some people think it is my natural color. ha) It is nice not being bald anymore.
Girls are busy with soccer and gymnastics. Seems like every day we have something going on. The days fly by once the kids get home from school. I am excited for Halloween (my FAVORITE HOLIDAY) and have about 80% of my decorations up. Going to try and get the outside decorations up this week.
My port got infected again so off the blood thinners for a few days and an oral antibiotic. Finally my INR (the rate in which your blood clots) was low enough I was able to get the port taken out. Yipeeeee!!!! I've had it in almost 9 months and was getting pretty tired of taking care of it. Now we wait to see if my infection is in my blood stream (then a new port ...YUCK) or just a temporary pick-line for antibiotics. I'll have another chest CT next week and we'll see where we stand with that.
Still feel good and healthy and have had some pretty good days. A busy weekend with the girls sports and the UTAH/BYU game. GO UTES!!!
For those of you who don't get my emails or aren't on facebook I'm raising money for an a very important cause through The Leukemia & Lymphoma Society's Light The Night Walk. Finding better treatments and cures for blood cancers so patients can live better, longer lives. I'm asking you to help by making a tax-deductible contribution! Please use the link to donate online quickly and securely. You will receive an email confirmation of your donation as it is made. I thank you in advance for your support which will make the difference in lives of thousands of patients battling blood cancers.
...like a Sonic Burger commercial. (just because it was funny)
Before I lose track of all the events that have been going on I better capture them. It seems just like last week that our doctors said “Your leukemia is in remission, but...” That “but” has sure been a pain in Carla’s buttocks. Let’s break these “buts” into 3 “but” groups; Blood Clot in Lung, Infection in Lungs, Infection in Ports.
“But” 1- Although small, the blood clot is serious stuff. Carla had been taking Coumadin and Lovenox shots (anticoagulants) in the belly for about 2 week to get to a treatment level. After being at a blood clotting INR factor of 1.1, she finally reached 2.8 which will help dissolve the clot and no more shots. BUT, on Monday the next level check was a 6.8, which is seriously too high, so docs said “stop Coumadin”. We thought “cool”, less meds are good, don’t bump into anything and bruise yourself. Then checked this Tuesday afternoon at our home, rose to 8! Nurse was a bit concerned, we called clinic and left message. This was serious enough that a nurse came back 90 minutes later to confirm that it was a correct reading. Still hadn’t heard back from clinic, so I called the nurses desk and Jodi said we will call you back right away. Within a few minutes, Whitney (PA) called us back and said “So Carla being Carla again.” Referring to how Carla seems to be very atypical with reactions to medications and scenic routes she takes with her treatment plan. (I tell Carla that she doesn’t need to try ALL the machines at the hospital. ) Anyways, she prescribes an antidote to the Coumadin to bring the INR down to normal therapeutic levels. At such high levels, people are susceptible to strokes, heavy bleeding, hematomas, and a bunch of other big words. Vitamin K is the antidote. You think you could go GNC or the vitamin aisle in Smith’s. Hell no, its prescription, and Smith’s doesn’t have it and LDS Hospital Pharmacy is closed. Smith’s understood our situation and made the phone calls to other close pharmacies, called my cell when they found one and sent me to Walgreens in Sugarhouse. By the time I got her the antidote it was about 8:30pm. I still had to go back to Smith’s that night to get McCall a bag for school. In the morning at the hospital the INR level was checked and was at 2.8, relief, disaster avoided. Yes, that is one big “but”.
“But” 2 and “But” 3 – After the docs said we need to watch those spots in the lungs on the CT, they scheduled another CT the following week to see if there would be any change in size of the spots. Sure enough, they doubled in size and new ones appeared, although not symptomatic. Without an actual biopsy of the spot in her lung to determine the specific bacteria or fungus they decided to add anti-fungal meds and take some blood cultures of her 3 lines used for IV medications for bacterial. Before leaving, they gave Carla an IV “loading dose” of anti-fungal then oral stuff for later. Based on the CT, it appeared to be fungal on how it looked. Well…that evening the phone rings at 10pm. “Hi Jeff, this is Shar…uh…” She received notification that the line cultures were growing bacteria, and that Carla needed to come to the hospital for an IV dose of Tigecycline, a heavy antibiotic, to avoid a major staph infection, and what could be causing the lung infection. So…off to the hospital for a “pee” yellow drug, got home at midnight. They followed up the drug with a different antibiotic, Vancomycin, which is some hardcore stuff that fights the type of staph detected in her lines. It really put her down this past weekend. Once again, it’s not the leukemia or the infection that is making her feel like crap…it’s the cure that’s kicking her butt. Because she was reacting so much to the Vanco, fever, red rashes, itchy, headaches, nausea, they reduced the dose and then switched her to the “pee” medication. Tuesday they took another CT, third in the last month, and said that the infection areas had remarkable improvement and should be on the path to clearing up. On Monday, lines cultures were drawn, and have not grown any bacteria since. Appears that these two “buts” have been licked. Did I just type that?!
Keep in mind that these issues have been running at the same time, I just broke them up for your entertainment value.
Kids have started school. Still recovering from her Vanco ordeal, I drove Carla with Callie in the car for the first day of school, and also drove McCall and Leslie for their first day of school as well. Life waits for no one.
My good friend Jay battled cancer in his life and has been an excellent friend to talk to though the whole process. I realized we had the same haircut.
“There is always something to thankful for!” I have this sign out each year to remind me that no matter the situation it is true. 
