Sunday, September 26, 2010

Shower Time

Today was a fabulous day! For the first time in 10 1/2 months I did not have to worry about protecting my central line/incision from water. My tri-fusion line was removed 10 days ago; i.e., central line. The incision site is completely healed over!!! Yippee!!! No more Glad Press n' Seal!!! No more changing the dressing daily!!! No more bandages!!! I can enjoy showers again!!! I love celebrating the simple things in life.

Much love,

Monday, September 20, 2010

Appendage Removed

Howdy ya'll! I went to clinic last Thursday, September 16. My labs were great:

* hematocrit went up to 33.1 from 29.7
* platelets went up to 109 from 105
* white cells went up to 3.6 from 2.5
* neutrophils went up to 2.2 from 1.3

All my other numbers looked great too; e.g., electrolytes, proteins, etc.

The weeks before my clinic visit were spent contemplating having a donor lymphocyte infusion (DLI). At first, I felt very unsure about what to do. I was left with the responsibility to make a decision about a process that could or could not be of benefit. Knowing my doctors had no clear data to guide me in the process was a bit of a let down. I asked many questions and talked to family and friends about the situation. To top it off, I have been feeling really well; still tired and weak, but my energy and strength continue to improve. A DLI could make me very sick. I came to the conclusion that the situation was out of my hands. I needed to focus on living now and seeking guidance from the one who knows all, my Heavenly Father.

I did a lot of reflecting on my previous experiences in the hospital, the priesthood blessings I have had, and personal revelation I have received through prayer. I thought about the many people praying for my health and for me to know what to do. I thought about the many temples where my name has been submitted. I realize not all of you following this blog are LDS and, therefore, may not completely understand what I am referring to. All I can say is that my testimony in my faith has grown immensely. I have been blessed with many miracles and tender mercies that come from my Heavenly Father. I cannot deny the spiritual journey I have been on throughout my illness. Contemplating all these things led me to decide to not have a DLI. I feel peace in my decision.

Since I decided to not have a DLI, my counts have been staying up, and I haven't had to have any transfusions since May - I decided it was time to have what has been known as my "appendage" removed.
On November 13, 2009 I had a tri-fusion line put in. On September 16, 2010 (2 months shy of 1 year) I had a tri-fusion line removed. Yippee!!! The line removal process took place in Angio, so I got to see my old friends Dan, Chris, Kent, and Shawna again. This is the crew who did my lumbar punctures. Getting my line removed reminded me of being in labor. Like I had this foreign object in my body that my body wanted out. The pictures and video taught me what I look like when I am in pain; I have had more attractive moments.
And the prep begins.
All ready to go.
Chris explaining what he is going to do: Pull on the line and see if it will come out with some strong pulls. If it doesn't come out, get Dr. Johns to come give it a try. I was nervous.
Chris gave it some good tugs, but the darn thing wouldn't budge. Dr. Johns was called and got there very fast.
Dr. Johns gave the line some very good tugs (harder than Chris), but to no avail. Now it was time for a shot. Man how that shot hurt!
One shot was not good enough. I never numb well! It really hurt when Dr. Johns started cutting. He gave me another painful shot, and then . . .
. . . numbness. I had some fibrous tissues that attached to my line - my scars are always lovely - so Dr. Johns had to do some cutting. He told me some jokes and talked to me about stuff. I learned that boys between the ages of 17 and 25 are the biggest wimps. If you watch the video, you will here me call them pansies. Dr. Johns distraction did help me focus elsewhere until he pulled that line out.
And here it is. I couldn't believe how long it was. The catheter was up in a vein that crosses over my collar bone. You can see where the line was attached to my body. You know, that big red thing; it had to be cut out.
The tools of the trade.
And this is what was left. My cousin said it looked like I was shot by a gun. Dan pushed on the vein in my neck/collar bone for a good 5-10 minutes. I finally told him I was getting a bit "off" because he was pushing so hard.
My cousin Jen took video of part of the process. You can't see much - mostly me reacting to pain.

When the procedure was finished Chris went to put gauze and a big piece of tape over my incision. Not good! I am allergic to tape/adhesive. Chris asked me how I wanted him to keep the incision covered. I determined, with the help of Dan and Chris, that I had to have the gauze and tape. So, Dan found some tape that didn't have a terribly strong adhesive. I had a very itchy, uncomfortable night. I was very sore and sad to miss volleyball. The next day, Friday, my mom and I worked on getting the tape and gauze off. Not an easy process! Some blood from my incision was stuck to the gauze. No wonder I got sharp pains when I moved! This is what we saw when everything was finally removed.

I have tried using a band-aid, gauze and paper tape, and a different brand of band-aid. It doesn't matter what I use. My skin burns and itches. If you look toward the top of the picture, you can see the scar where the catheter from my tri-fusion line was at my neck/collar bone.

This is my shot from today, Monday. The incision is scabbed over. Yeah!!! Now I can see bruising too. I figured it would show up eventually.

My incision is feeling better each day. I can't wait to take a shower without having to worry about covering a big tri-fusion line with Glad Press 'n Seal: That's how you protect "things" when they can't get wet and you're allergic to adhesives.

Thank you Jen (Jenny ;0) for going with me! I'm glad you got to see the procedure. I am glad Kaden got to come with too. Once he found out I was probably going to get my line out, he was determined to go to clinic with me. Hopefully the visit brought him a little bit of closure with everything.

Thursday, September 9, 2010

Decision Time

My personal disclaimer: My spelling and typing are not the best these days. Please forgive my errors if you are one who reads this before Cami and Angie fix all the mistakes they find. :)

I had a clinic visit last Friday, September 3. The visit included lab tests, a pentamadine treatment, a visit with the new doctor on the team, and a visit with Dr. Peterson who has been on the team since I was diagnosed. It was a long day! Luckily, there is always somewhere to plant my head to rest and plenty of heated blankets to keep me warm. My lab results look good. My hematocrit is holding steady around 30 - so my tank isn't full yet. My platelets went up. My white cells and neutrophils went down - probably due to allergies or a minor cold I have.

This is the new doctor on the team, Birgitta Mitchell. She had been working with in-patient, so this was my first visit with her. I really like her. She was thorough and easy to talk to. I often make goofy remarks (right Kim!) and she could handle it. My check up by Dr. Mitchell went well. My check ups are generally focused on looking for signs of graft vs. host disease (GVHD). I haven't had to deal with GVHD on a large scale, maybe not even on a small scale. Who knows . . .

Dr. Mitchell did give me and my mom great news. The results regarding the translocated chromosomes 4 and 11 came back negative. The pathologists no longer see the translocation. This is wonderful, fabulous, exciting news!

My pentamadine treatment went as usual. It is a breathing treatment I get once each month. I first do a treatment of albuterol to open up my airways, then I do a treatment of pentamadine. I spend most of the time gagging and dry heaving because the pentamadine is disgusting. I would much rather do the pentamadine once a month than get a horrible fungal pneumonia. Just one of the few preventative medicines I take.

My visit with Dr. Finn Peterson was fine. I was glad to finally get a picture with him. He is a great doctor from Denmark. I love his accent; it reminds me a bit of my Grandma Hill. As I said the meeting with Dr. P was fine, but a let down at the same time. This was the time I was supposed to be told what the next step is going to be. Unfortunately, there are no clear-cut answers. Remember, the options are to do a DLI (donor lymphocyte infusion) or to do nothing. Dr. P had spent the week or so before my visit conversing with doctors from around the world and with the other doctors on the team at LDS. This is the info my mom and I were told during our visit with Dr. P:

There is no data supporting one option (see above) being better than the other. I do have donor cells in a freezer at U of U and, because of this, some doctors think I should have them infused since they are available. The doctors have discussed the fact that infusing the cells can result in severe GVHD, where the donor cells attach my body. GVHD can be manifested in many ways: skin rashes, scleroderma, problems with the liver, heart, eyes, teeth, mouth, lips, etc. It's overwhelming to think of all the possibilities. Oftentimes, GVHD is just as bad, if not worse, than leukemia itself. Infusing the cells can also result in my donor cell increasing resulting in a better engraftment. There is no guarantee of not relapsing if I go this route. Now, the flip side.

Do nothing regarding an infusion of cells and continue to monitor my progress. My counts have been going up. The main counts my doctors look at are my platelets and my neutrophils. My platelets have been on a steady climb up, and I have not had to have platelets infused since May (I think). My neutrophils are not high, but they are not low enough for concern. A lot of things can affect the neutrophil count (allergies!). There is no sign of leukemia in my blood, bone marrow, or spinal fluid. The translocation is gone. I am feeling well. Because of these things, some doctors feel that monitoring my progress is the way to go. They feel that my transplant may have already accomplished its task and that my body may be working on correcting it's errors on it's own. If an infusion is completed, the positive process my body is (?)doing(?) may be destroyed, leaving me worse off.

Dr. P explained that the doctors he has conversed with around the world and on the team are split. That you could literally split them in half with a knife: 1/2 supporting DLI, 1/2 supporting monitoring. The decision is left to me. I have had many thoughts going through my mind that I don't have the energy or brain power to type about at this time. The one thing I know for certain is that there is one Being who knows what I should do, my Heavenly Father.

Much love,