Life comes at you fast...

...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.

Good friends AREN'T hard to find

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.

Who's looks better?

Caution: Detours Ahead

Another CT scan on Monday shows another nodule in my lungs (still small but another), suspecting its fungal. After lots of blood was taken to see what infection it could be we infused me with an antifungal for 2 hours to start fighting off infection. Had an EKG and so far the news is that my heart is strong and healthy. All my numbers look great and all major organs are doing well.

Then last night at 10:30pm we got a call from the BMT clinic. Seems that all 3 of my port lines have some sort of infection. They aren’t sure if it is fugal or some kind of bacteria. Either way we headed up to the clinic for another infusion of a different antibiotic just to get started. (Thanks to Patti our neighbor for sitting with the kids at last minute notice!!)

This morning we got the call that I’ll be starting an in home infusion of antibiotics every 12 hours for all three ports. If the infection does not clear up we’ll remove the port and/or put in a fresh one. This means I’ll be doing 6 hours of infusions (including my daily magnesium) everyday until we figure out what infection it is. I still feel healthy and glad I’m not sick or have to be admitted back into the hospital. I’d rather lie in my own bed and infuse that sit in the hospital bed and do it there.

Two steps forward and one step back is how I feel today. I am cancer free and happy about that…however dealing with the lingering effects of all the cancer fighting drugs gets a lot frustrating. This is curable and easily fixed! I just need to do it.

100 Day (July 29, 2011) Post Bone Marrow Transplant Test results!

There has been much anxiety over the past few weeks as Carla has been undergoing tests to evaluate her post bone marrow transplant procedure. These results are compared to pre-transplant tests.

Here is the news: Our doctors say her leukemia is in REMISSION. This is really great news! They do not detect any new tumors related to leukemia, but… “always a but”.

Following her CT and PET Scan tests last week, the hospital called the same evening to tell us there was a blood clot in her right lung, and some small nodules detected. Obviously, this news concerned us, and we learned that I had to give her a shot twice daily in her stomach area starting that night. I guess it paid off watching the nurses give her this shot many times over the course of her hospital stays. Although blood clots in the lungs (Pulmonary Embolism – PE for short…go figure) can be life threatening, Carla did not show any symptoms of the PE which is good. This is being treated with anti-coagulants over the next 6 months, and hopefully the shots can stop within the next 7 days.

The nodules seen on the CT did not “light up” on the PET scan so the doctors were not concerned, but would look at them in a few weeks when the PE is checked with a CT.

Other info: Carla now has all donor blood, A+. No longer O-. Bone marrow biopsy test results were good. She will continue to be on immune suppression medication for at least 9 months, but has started the tapering.

There was so much information discussed today and we wanted to relay as much of the important stuff to all of you. We’ve been so fortunate to have the people in our lives to help our family through these challenges.

I added my name to the Marrow Donor list and submitted my DNA to the “Be the Match” program (http://www.marrow.org) so that maybe I can give the gift of life to someone in need. Its so easy, please consider doing the same.

Learning as I go.

Half my tests are over….nothing too bad until the bone marrow biopsy had to be done again. (A medium size needle is used to numb all layers of the skin in the lower hip…then blood is removed from the bone) OUCH!!!! This was my third one so I knew what to expect…..pain. One of the doctors recommended conscience sedation to relax me so I thought I’d give it a try.

Here is what I learned: I am never doing conscience sedation for my biopsy again. I was still awake, could feel everything and all it did was make me sleepy and nauseated. Guess I learned my lesson. :{

Had my eyes checked and got a 100% perfect rating (in fact the doctor said of all the BMT patients he has seen I was one of his top 3. yeah!!) Did my pulmonary tests and even though my numbers were lower than before the transplant I got a A+ . I’ve completed a chest x-ray and gave more blood. Thursday I will do the full body PET scan. It is very easy to do but just takes hours to complete. (This will determine if the tumors are gone or not.)

Today I meet with the stomach specialist to report how much better I am at eating. What a difference it makes to be able to make a meal, eat it and enjoy it. I still have to continue with the weekly port cleanings and seeing the doctors to go over CBC issues and check my overall health.

Thanks again for the cards, calls and yummy food that has been delivered. We've got the best family, neighbors and friends that anyone could ask for.