Thursday, July 31, 2008

Howdy friends ~ I got a wonderful surprise today!! My stepgrandmother (Barbara Gauthier), who is one of the most sweetest, dearest people in the world, sent me a whole bunch of scarves she had. They are sooooooooo beautiful! Is is weird to say I'm kind of looking forward to losing my hair now because I'll have such fun, pretty, scarves to wear??? Barbara is a true southern lady, through and through and such a great role model. She raised a bunch of terrific daughters (5 of them!) and a talented son and unfortunately lost her husband not too long ago. The surprise gift was nice and much needed because this morning I was feeling all whiny and wimpy and it put a big smile on my face. I do not like feeling wimpy but this week I just have not been feeling that great. I was in the hospital Sunday/Monday. With the chemo I have to take my temperature daily and if it gets to 101 then I have to go to the ER for antibiotics. I can't take the normal medications I used to take... no advil, no tylenol, no aleve, no aspirin so dealing with headaches and pain is a challenge now. My chest still hurts where the port was placed. The doctor told me it would take about 3 weeks to heal and he wasn't kidding. There is a big bump out of my skin where the port is so it looks like I have some freaky tumor or something in my chest and you can see the catheter along the inside of my neck where it meets up with my jugular. Lovely...... I think I shall also wears scarves around my neck!!!! My neck and chest is becoming full of scars. My husband has a t-shirt that says "scars are just tattoos with stories". That is no doubt. I still have that lovely 5 inch long scar down my chest where I had my thymectomy surgery and chest sawed open in 2006. None of those scar creams worked on me. I just don't wear v-neck shirts anymore. C'est la vie! I wonder which is worst... no hair, scars or wrinkles??? I think I'd have to go with the wrinkles :-)
Well, my cats are insisting that I give them my undivided attention for a while so I best go. Love to all!!!!!

Saturday, July 26, 2008

I need scarves, caps and hats (summer or winter)! If you have any old ones laying around not being used.... please send them my way. They will be very MUCH appreciated and put to full use if all my hair falls out!!


Tuesday, July 22, 2008

I started my next new round of chemo (R-CHOP) yesterday. Last week I had my port implanted in my chest for the chemo. I actually had a Powerport placed in so it can be used for CT and PET scans since I have a lot of those. The surgery took about an hour and I have about a quarter size triangle port under my skin (looks like a bump) and it connects to my jugular by a catheter. It took two incisions. The catheter is sewed into my jugular. This will keep me from having to poke around my veins for an IV each time I get my chemo and give labs since my veins are so tiny and roll. Yesterday's chemo session actually took about 9 hours. I was to be given four drugs but wasn't able to get one of them because my liver enzymes were way to high so I'll have to have an extra treatment at the end. The nurse told me to be prepared to lose most of my hair. It will start falling out in about three weeks. When it does.... I'll go ahead and shave it. I think it's worse to watch it fall out slowly. I will need to start finding scarves and hats to wear. No goofy wig for me! The hardest thing for me during this treatment will be to stay healthy. Chemo makes your white blood count drop and since I have chronic low white blood count, I have to be extra careful. I'm suppose to stay away from crowds, kids and unclean places. I have to go to the ER if my temperature gets to 101 in order to get antibodics. I basically have to be really careful. And my husband says I'm never careful about stuff like that so he's going to be watching over me like a mother hen.
I'll post more later ~ thanks for all the emails, posts and calls!!!

Saturday, July 12, 2008

Hi people!! I hope everyone is doing well out there!! It's another agonizing hot day in Texas.... I wish it would rain today! I LOVE rain and storms. Presently I'm at my grandmother's house visiting and have been here most of this week. She lives just north of Houston so no relief from the heat here. My brother lives with her now so I've enjoyed spending time with him. But I need to get back to Houston tomorrow because my husband's mom and her husband flew in from Pennsylvania. Monday I have jury duty and will do all I can to not get picked. Since I was a probation officer for 17 years I'm not always first to be chosen luckily. Tuesday I am suppose to spend a few days with my best friend Kelly W. in Galveston at the beach at her family's condo. Busy week next week. I think my mother-in-law will be in town for about three weeks. Today I went to Bath and Body Works and got her some goodies to make up for me not being there.

I finally had my follow-up visit with my oncologist to find out the results of my last bone marrow biopsy. The really good news is that the cancer is NOT in my bone marrow yet or in my spine. I will do six more treatments of three different kinds of chemo. To make it less agonizing (less side effects) for me, the oncologist will have me do one treatment session every three weeks. So it'll take a total of 18 weeks to do all the treatment. The IV chemo medicines will be Vincristine (Oncovin/Vincasar PFS), Cyclophosphamide (Cytoxan) and Rituximab (Rituxan) again. I will have an IV port in my chest put in surgically this time since I had such a difficult time with my veins/IV's last time. I'll start the treatment after I get that put in. The treatment takes 5 to 6 hours each time (for the IV drugs to go in) and it's at MD Anderson Hospital. Anyone want to volunteer to take me???? David and my stepmom took turns taking me last time and they didn't die from boredom so it must not have been too bad. I'll keep everyone posted as soon as I get the port put in.

I hope everyone is having a wonderful summer so far! Keep in touch!! kmuhl@sbcglobal.net

my beautiful Harriet

my beautiful Harriet
This is Harriet, my sponsor child through Compassion International. She is 9 and lives in Uganda, Africa. I've been sponsoring her for about 2 years now. She just sent me this photo and said she bought the shoes and stockings in the photo with money I sent her. Please pray for her and her family.