Overnight in Denver

So Friday morning I called my transplant coordinator Kelly to see when we were going to have the CLC put in. She was gone on Thursday so I had to wait. She said at first that we were going to do it on Friday the 27th but after talking to the dentist we could possibly do it on Monday the 23rd (today). She was going to talk to the doctor and then call me back. She never called me. So I left a message at 5 after she was already gone. I just assumed that meant that we were going to do it on the 27th. She called this morning saying I thought you were coming today. Long story short, we are going tomorrow the 24th.

First we have to be at PSL at 6:30 to check in, which takes at least 30 minutes from my experience the first time two weeks ago. Then we will go to the bone marrow floor and they will insert a catheter and hopefully remove the port that I already have. It will stay for about 40 some days while I am doing this transplant. Hopefully it won't come home with me. Then I will go to the clinic and get 6 hours of a drug called cytoxan this will help bring my bone marrow/stem cells out. I will have fluid IV's overnight at a hotel, I'm hoping, and the next day I will go back to the clinic and get the IV's out and get a shot of Neulesta. Derek's wonderful mother and sister will be watching the kids so I am so grateful that they can do this on such short notice. They are truly saints.

What a week

So a lot has happened in the last week. Let's see, my hair fell out or I washed it out last Sunday. On Tuesday my jaw started hurting off and on; Tuesday I did all of the tests, very fun; I passed with flying colors. I did a lung test, an Echo cardiogram, a CT scan, a chest x-ray, a EKG, another bone marrow biopsy, and a urine test. The next day I had a PET scan. On Thursday, my jaw started hurting more and localizing to one tooth; so I went to the dentist. He said that it was only a bruised tooth. The next day we went to the zoo and stayed in a hotel in Denver to visit my aunt Janet. That night I couldn't sleep because my jaw was hurting so much. My cousin gave me some vicadin and I could sleep a little the next night but my jaw was really swollen and hurting. The next morning I woke up with a swollen lymph node under my jaw. So I went to a Urgent Care; they said I had a dental infection. Yesterday I woke up with blisters on my gums so I went back to the dentist. He did another x-ray and saw that the tooth went south and didn't want to be in my mouth anymore, possibly from the chemo. He decided that I needed a root canal. He tried but one canal had calcified so I had to go to a Endodontist. It took another hour and more pain but she never finished. I have to go back tomorrow to get it finished hopefully.

Because of this infection I have to push back the next steps and the transplant by a few days until the antibiotics are done. I was suppose to have Chemo and another port put in on Friday but it may be pushed to Monday or Tuesday. The worst part is that it messes with all of the schedules that we put together for childcare.

Hair today gone tomorrow... again

So my hair is starting to fall out again. It's still short so I don't think I will shave it again; but it annoying finding globs of hair everywhere. About two days ago I felt it tingling and hurting just like last time so I knew what was coming. The good news is it is so dark that it isn't that noticeable yet. Hopefully I can hold off needing to wear a scarf for another week. We were able to go to the temple today where Derek and I were married 5 years ago; while my sister watched the kids. It was so wonderful to be there and feel of that calm, peaceful feeling again. I was worried that I wouldn't be able to go for a really long time.

Lymphoma buddy

I just got connected with a lady that lives in New Jersey who has the same two cancers as I do and went through a transplant in February. She told me that this is going to be a very immense experience. Besides her experience below she said that she needed help for an entire month because she was so week. She has two kids that are 13 and 16; it sounds like I might need more help then she did.

"When I was released from the hospital, I had no energy, and couldn't eat (really, I hadn't eaten anything significant for weeks), my skin was peeling, particularly the soles of my feet and the palms of my hands, and my eyes were very watery. I was told that the tears rolling down my face were the result of having lost the eyelashes that keep them in my eyes. I really needed help in the house for a good month after being released, and I wept a lot, as the experience was just very intense, and full of small challenges. I lost all my hair, which is now growing in, and I look like a woman with just a really short haircut. My fingernails also peeled off, and under them were new nails. I feel completely new!"
"The transplant is intense, but it's brief relative to the lovely life ahead of you."

I'm thinking that I am going to pig out on all the foods that I love before the transplant!! So if you have any great recipes send them my way!

Another Quote

"Mercies and blessings come in different forms--sometimes as hard things. Yet the Lord said, 'Thou shalt thank the Lord thy God inall things' (D&C 59:7). All things means just that: good things,difficult things--not just some things. He has commanded us to be grateful because He knows being grateful will make us happy. This is another evidence of His love." ~Bonnie D. Parkin

added quote from my dear friend Monica

"Tribulation is a blessed lot, because it is only in passing through it that we find transcendence."

R.I.C.E. side-effects

So this Chemo treatment has been very different than the RCHOP. My doctor told Derek that it is a harder regiment than the RCHOP. I didn't throw up with RCHOP but I did this time. I also didn't have mouth sores but I developed them yesterday. The other weird thing is that I got a hive-like rash yesterday night and my arms and legs were itching like mad. The good news is that my hair hasn't started to fall out yet and it's getting very thick. I'm sure it will because with the RCHOP it took 18 or so days after the first treatment; but hey it's still here and that makes me happy. I also have been more tired and I've had a strange headache before I go to bed or when I get up from bed after sleeping.

My most difficult challenge has been my little boy's reaction to life, (I'm guessing here). Isaac has been throwing terrible two tantrums a lot lately. He is very persistent, hopefully that will serve him well in the future but right now it is not so much fun. Because I have had so many doctors appointments since Lizzie has been born, and because I won't be with them in July I feel a little guilty, but by no means do I give into his demands. All I want to do all day is listen to them talk and hug and kiss and play with them!