Marshall's music, t-cells, t-shirts and more

Friday, January 25, 2013

So Fresh and So Clean Clean

On Wednesday we found out that Kezman and AJ have Respiratory Syncytial Virus (RSV). Even though she has felt miserable, Amanda has done a great job taking care of Kezman while I try to avoid the germs. I haven't felt sick but they tested me at my clinical appointment and sure enough I have it too.

What is RSV? For adults with normal immune systems not much more than a cold. For young infants it can be more serious, and for bone marrow transplant patients it can be fatal. That's why the hospital said they wanted me to come in right away when they called with my results.

My treatment lasts for 5 days. I inhale the drug Ribavirin in 2 hour intervals at 6:00 AM, 2:00PM, and 10:00 PM. Before I inhale the Ribavirin I get to "puff the peace pipe" it's an apparatus called a nebulizer that I use to take Albuterol. This drug opens up my bronchioles so I don't have any coughing spasms from the Ribavirin.

The Peace Pipe
Ribavirin works at an intercellular level. It disturbes the DNA of the virus and prevents it from multiplying. They aren't entirely sure how it works, they just know that it does. It has some dangerous side effects (kind of like chemo) so the nurses have to dress up like there has been a hazardous chemical spill when they administer it. 

All Hooked Up
It also clings to my skin and clothes so I have to go into a separate isolation room for the treatment. After 2 hours of breathing the funky stuff I have to take a shower and change into fresh clothes. Then I can go back to my room.

This bad boy vaporizes the Ribavirin.
That's three showers a day! The good news is that if all goes well I will be home by Wednesday. And I will be super clean! Always a new adventure on East 8 :)

Friday, January 11, 2013

1-11 AJ Day O' Wishes Come True

Every January 11th I celebrate my very own unofficial holiday of AJ Day O' Wishes Come True (if anyone knows how much it cost/what to do exactly to make it official, please let me know:). Last year I didn't write about it (I did the year before) due to Marshall taking over the blog for a while. He had posted about his first crazy experience with chemotherapy. That was a wish come true in a way because it was a step toward his remission---and hopefully cure!

Marshall has been doing well. He still has tons of pills he takes every morning and night. Most of them are vitamins.  His weekly visits to the hospital have gone down to bi-monthly visits. I always get anxious before and during these check-ups and lately I have been staying home with Kez to try to keep my anxiety in check since Marshall has been healthy enough to go on his own.  Each time they check his blood levels- if leukemia returns they would drop, tacrolimus level- this is the drug that suppresses his new immune system so his graft verse host disease is under control, and he meets with a doctor to talk about how he feels.

 His most recent visit he brought up how his skin has been itchy for a few weeks. The doctor said it sounded like graft verse host of the skin. His tacro level that day was later called in at a whopping 15. It is supposed to be from 8-10, so we are hoping the itchiness was due to high tacro levels. Once you have chronic graft verse host (anything 100 days post transplant is considered chronic) there is not much you can do for the rest of your life but try to treat it with creams and medication, stay out of the sun (the ultraviolet rays can cause the disease to spread to liver, etc. that could be fatal) or steroids.

Like many other cancer related ideas it can be a curse and a blessing. With the GVHD disease, the cancer is less likely to relapse--- the new marrow and immune system is working well to fight not only healthy cells, but bad cells. With no graft verse host the cancer is more likely to return. At this point, Marshall has been clinically diagnosed with acute (acute is anything in the first 100 days post transplant) GVHD of the gut. Clinically diagnosed means that they gave him the diagnosis based on his symptoms since when they scoped his stomach and intestines they did not find hard evidence of the disease. This may have been because it was too early to have developed enough for the scope to find or it may have been his stomach and intestines were still healing from the full-body irradiation.

Okay! So some of my wishes that have come true since the last time I posted on this day:

1. I have a child! A handsome, healthy son with his mom's button nose, cute little toesies, and huge hands (he gets those from the Jensen side-neither of his parents have them). He has been talking more and more and I am SO enjoying this stage :). Today we got 3 feet of snow (3 feet on 1/11 ya!) and he just LOVES snow! I also have a much greater reason to adopt/be involved with the IVF science like I always wanted with Marshall's current fertility status.

Oh, I also have a dog. His name is Booker- like Booker T. Washington. Even if we can't have our own kids for a while if ever again, the fam is still growing.

2. If Marshall survives this for years, I have lived my part in my wish to find a cure for cancer.

3. My wish of helping people internationally is coming true. It may not be Save the Children because I need my Master's in International Health before I get the position I would want there. In a way it is more than I dreamed of because I was wanting to help the physical state of children. The new job I have started at the Global Service Center will help people of all ages in Brazil spiritually.

4. Along the lines of helping kids, I didn't think I would learn to craft well with my hands after making a baby outfit with different lengths of arms when I was 12. This only became a desire one day in my mission when I was studying the scriptures about good traits of mothers and one of them is to work well with their hands. Proverbs 31 says she will seek wool and flax and willingly work with her hands. Well, I made this sweet mohawk hat and cute ribbons and pins for my nephew and niece.

Marshall took it to another level and got me a sewing machine for Christmas, so watch out! Something else I have been trying to do with my hands is make some nutritious meals.

5. My wish of all three brothers serving a mission came true with my youngest brother going to Kobe, Japan.

6. We celebrated Marshall surviving one year with the family at Friday's! Now that is a wish come true!

7. This year I made a Drops of Awesome Box for our family. This will be to remind us of the amazing things people do for us and the amazing happenings throughout our days- even on the bad and 'nothing special' days this year. My wish is that every year my family can look back through the drops of awesome and remember how awesome we are and how awesome the world is!

Thursday, January 3, 2013

One Year Ago Today

One year ago today I...
  • woke up and got ready just like any other day
  • knew nothing about leukemia or bone marrow transplants
  • met with a doctor about persistant headaches 
  • submitted a comprehensive training portfolio at work
  • received a phone call from the doctor requesting I go to the emergency room
  • spent nearly an hour in the bathroom because I refused to let the doctor "obtain" the fecal sample
  • had a dangerously low blood count
  • ate a baconator that my brother brought me from Wendy's
  • did not know that over 90% of my bone marrow was packed with cancerous cells
  • received my first blood transfusion
  • did not know I would be diagnosed with cancer tomorrow
Today I do not wish to repeat any of those things - accept the waking up part... and maybe the baconator :) 
It's been a while since I've posted anything and I am happy to inform you its because things are going well. I have a fairly secluded work space back at Lexington to avoid germs. I aced all three online classes I took at the University of Utah. I had my central line removed just before Thanksgiving and no longer have to do 3 hour infusions of Magnesium every day. I finished physical therapy, and I was approved to skip town and visit my in-laws for the holidays.

Kez got a puppy for Christmas and that dog has kept me up more at night than Kezman ever did! It's not that the dog is terrible either - Kez has just always been a good sleeper. It is so fun to watch the two of them giggle/bark and run around the house. They like to pick on each other too. Half the time I'm hollering at the Kezman to play gently with the puppy and the other half the time I'm reprimanding Booker (the puppy) to stop playing rough with Kezman.

At the beginning of every year I sit down and write myself a letter. I do not read this letter until the first day of January the following year. It is a great exercise to help me take a personal inventory and be honest with myself of what I need to improve. Last year (just days before my diagnosis) I wrote, "Have a positive attitude. Believe in yourself and those around you. Face challenges with courage." How fitting this advice was for what I was about to undertake. I then transcribed the following quotations in my letter:

"He does not believe that does not live according to his belief." - Thomas Fuller 

"Be patient with yourself. Perfection comes not in this life, but in the next life. Don't demand things that are unreasonable, but demand of yourself improvement  As you let the Lord help you...He will make all the difference." - Russell M. Nelson

If this advice was good enough for last year, I'm sure it's good enough for this year. Here's to 2013!