Wednesday, May 28, 2008

There hasn't been anything super exciting in the last few days to report. The tumor is still trying to come out, it still hurts like bad words and we are starting to explore options of surgery and who to do it. I didn't like my options of surgery 6 1/2 years ago here in the Phoenix area and we are hoping to find that that situation has changed since I could continue treatments sooner after surgery with no travel involved. Our insurance is in Texas - which could possibly lead us to MD Anderson in Houston (the #2 sarcoma center in the nation) - but I would have to stay and recuperate longer before travelling and continuing treatments back in Mesa. If worst comes to worst, Dr. Lodi still knows people in New York from when he was at Columbia University, but travelling there and back would not be pleasant not to mention the expense of getting it done there and staying there - whew! We will do whatever is best. The infection is back - raging full force and I was pretty sick last weekend. And there are new sores on my leg where the tumor is trying to come through. That is why we are going to look in all the surgery options. Surgery can be a death-sentence for sarcomas, but I have IPT now (the form of administering chemo) that we didn't have before and we will be trusting in that a lot. We'll see.

A couple funny from the kids in the last few days:

On Monday, Rick gathered the kids around to talk about Memorial Day. He had spent time reading about all the wars from the Revolutionary War to present talking about the number of people who fought and died and the history behind Memorial Day. We also read Uncle Randy's great email and looked at the pictures he sent. When we got to talking about the Middle East, Grandma brought up how fast we got to Baghdad and how the whole world watched it on tv, Caleb piped with how fast the bad guys got out of there and how they had to hurry "ON THEIR CAMELS." He is so smart and knows so much about so many things, it was so fun to see that there is still little boy in there with him thinking that they all ride camels over there in this day and age. My Mom and I were giggling as quietly as we could without him seeing. "Giddy-up camels, hurry, hurry, the U.S. are coming!"

Last night when I was putting Emma to bed she had a wind-up teddy-bear with her that played a nifty little version of "Twinkle, Twinkle, Little Star". She likes me to sing to her after we read to snuggle for a minute, so she said, "Let it go for a minute, Mom, it plays 3 songs: Twinkle, Twinkle, Baa Baa Black Sheep, and ABC's". I was thinking it must have played little variations. I listened to it a few times before I started singing with it and each time it played the same thing. I cracked up thinking that SHE heard 3 different songs just by what she sang. So I sang each one for her to the same tune and she was happy as a lark that she got al three songs.

Okay, so I think they are cute kids. I will keep them. It has also been nice to have Rick here. He has been so helpful and has fixed food, played with kids, and has been getting up at 5:00 to start work by 7:00am Austin-time. Nice for me, because then I didn't feel bad asking him to stop yesterday at 3:45, knowing that it was almost 6:00pm Austin-time. :) He's tuckered by 8:00pm, so I better start getting to bed earlier with him.

Wednesday, May 21, 2008

Caleb at a Diamondbacks Baseball game with Uncle Spencer, McKay and Kaden.

Caleb at a Diamondback's Baseball game with Uncle Spencer, McKay and Kaden

This picture is for Aunt Deborah's sake. Abigail is feeling much better about her hair after playing spa with her cousins. :) Many thanks to Auntie Berta and Grandma!

Caleb is enjoying being back in Karate!

Emma, Gracie and Abby planting Sunflower Seed SHELLS. They were mighty disappointed that nothing grew, but it kept them busy for 3 hours one Saturday morning! We'd better get them some real seeds.

Doesn't Emma look beautiful! Aunt Karson made the cake, helped her decorate it AND painted her fingernails AND curled her hair for a fun Girls Night. Emma was thrilled!

Cute kids, huh? I am a bit prejudiced, but I love them!

More stuff on the sore, the tumor, etc. Good and bad, well gross. I guess we could call it the good, the bad and the ugly. I won't show pictures of THAT

Good first: the tumor has shrunk MORE this week. We are truly grateful. I am hoping it continues at this rate. SOMETHING has to make this pain worth it.

Bad (not BAD just gross) news: The next part gets a bit gross, so don't read if you might get queasy. I am back on more anti-biotics; yes, a little more infection, and watching to keep it at bay because -- the sore is nothing more than the tumor itself coming out through the skin. UGH! Dr. Lodi (while he is trying to be compassionate about the pain) is ecstatic. He has seen it do this many times with breast cancer, but never with a liposarcoma, but he isn't completely surprised. Apparently, the tumor is now dying and at a faster rate than my body can absorb it and tackle it internally, so it is literally pushing it out. Raw tissue being exposed (plus the pushing out) makes me want to say bad words, but that doesn't make it feel any better, so what is the point? There is no fun in being naughty enough to say the words.

So.....I hope it keeps going quickly (relatively speaking), because that would make this pain a lot more bearable and seem worth it. Actually the pain is NOT really very bearable, but it would be worth it. :)

My hair loss has slowed down a LOT, but I am still cutting some off -- any input on style? It still has to be long enough for a pony because it is now over 100 degrees here and I have days I just don't feel up to fixing my hair.

Rick is coming on Friday to stay for 3 weeks. We are excited to have him here. Let's hope we all still love being together all day every day after 3 weeks. With the kids homeschooling, playing with cousins and lots going on at Grandma's house, Rick working from home, helping out with meals, etc and me at the Dr. most of each day, it could get crazy. :)

Friday, May 16, 2008

Good news flash:

Yesterday, in checking this horrible sore (I promise I won't swear although I feel like it at moments - it hurts like*%#@*!) Dr. Lodi measured the big tumor in my leg. It has gone down by 30 cm since I have been here! With what I have gone through lately, I would have taken 10 cm. Also the tumor by my shoulder continues to shrink. We haven't measured it, but it is smaller. We can tell. As I have lost weight up on the top of my body, it has gotten smaller, too. It would be more pronounced as I've lost weight if it hadn't shrunk, so we know. Plus, Rick is a good judge. Since he doesn't see me for 2 weeks at a time, he can tell when he comes.

Keep the prayers coming -- I believe in them!!!!! We are going to lick this! It makes the hair I lost the other day worth it. I will lose all my hair to see this GONE! Hair can grow back!

Thanks to everyone for their love and support! I am so humbled with all the ANGELS that Heavenly Father has sent into my life.

Wednesday, May 14, 2008


I AM still alive. I didn't realize it had been soooo long since I had posted. Honestly, the last 2 weeks have been incredibly rough!!! To put it slightly. The infection I mentioned earlier flared to a pretty scary degree. I had a low grade fever during the morning which would start to go up to around 102 - 103 or higher at night. It never left and I was a pretty sick puppy for the last 2 weeks. After a weird heart/breathing thing last Friday which landed me a trip in an ambulance to the hospital, I guess my body decided that that was it. Friday night (or more accurately Saturday morning) at 2:30am, my fever BROKE. I woke up absolutely drenched from head to toe. I was so excited, I woke up Rick (who was here visiting). He was happy for me, but in the middle of the night, I didn't get much reaction from him. :)

So, it took a couple of days after that to feel more back to normal, but I am feeling much spunkier now FOR REAL and getting out of bed isn't such an incredibly hard thing to do.

The kids weathered the sickness, but I think I wore everyone around me out. I hate that. Mom isn't getting well like she should, Aunt Karson is sick now after taking so much care of me and my kids, Aunt Sarah must be WORN out, too. Hopefully, now, I can step back into being a MOM. My days are long at the clinic sometimes and I feel like a working mom. *sigh*

In the middle of being sick, my picc line starting clotting so badly that we couldn't use it and the Dr. wanted it OUT. With the infection, they couldn't put in a port, so last week, with a fever and feeling like death, I had the picc line taken in and a TAK line put in my chest. It wasn't fun. But the Dr. is sure that the reason I couldn't get rid of the infection after ALL the antibiotics I was on, is because it was in the picc line, too. He is probably right, since 2 days after getting it out the fever broke finally.

The kids started swimming lessons this week and Caleb is now back in karate, so they are finding activities here. It is good. They still love playing with cousins and think they are abused if a day goes that they don't see any cousins to play with ( I think it has happened only 2 or 3 times the whole time we have been here). They are good kids and I am glad they are here with me. We miss Rick like crazy and look forward to the times he can come.

Hopefully, next time I can report something a little more cheerful. The good news is: I think we have the infection beat! I am still finishing my last antibiotic, but then I think we are done! Hallelujah!

Thursday, May 1, 2008

I know it has been a while. I am sorry - thanks to everyone who has asked. I feel so silly doing this. It feels self-centered.
The above pictures are Caleb playing Legos with cousin Kaden Knopp. Rick and Caleb hanging out in Uncle Spencer and Aunt Karson's pool. And Emma literally hanging around with cousin Abby Thomason.
The last week has been a bit tougher for me than I wanted. I started getting a fever right after I last posted. I didn't talk about it, thinking I was detoxing. But I was feeling pretty crummy. My thinking was, "If I complained about all the pain and aches, I would never shut up. It doesn't do any good and it is yucky to be around!!!!" Besides, you kind of get used to not feeling good sometimes. Anyway, by the next day when I told Mom I had a fever that wouldn't go away, she FREAKED!!!!!! She ran for the thermometer and when she saw 101.9, she ran me to the Dr. She scolded me the whole way there for not telling her. :) Sure enough, she was right, the sore on my leg was infected and from the blood tests they ran it had gone systemic. Ick! So, no port-a-cath until the infection is FOR SURE gone, but miraculously, my picc line started working that very day (which is good since even Dr. Lodi couldn't get an IV in my arm after 2 nurses tried). So I could go back to getting treatments immediately. On top of the treatments now, I am getting 2 oral antibiotics, 2 IV antibiotics every day and a shot in the rear antibiotic every day to take care of this infection. We thought we had it licked for the most part, but this week back came a 102.6 fever raging for a while and that is when the Dr. upped the antibiotics and added a few drugs. Such fun! So that is why I haven't updated. I haven't felt super duper and it is kind of depressing to talk about. BUT, today I woke up feeling the first bit of spunk that I have felt in several weeks. I overdid a bit since I felt good, but now I am ready for bed and to sleep.
THE KIDS ARE DARLING!!!!!! They have been great for the most part. Caleb has been a big help. He has worked soooooo hard on his schooling (he can tell you about the periodic table and has built molecules and explained them all to me with the correct structure -- he is amazing!) and he has been helping Grandma clean and organize. Emma has been NO help, but has sure gotten in a LOT of hard play.
Caleb is going on the father/son campout with Uncle Spencer tomorrow and is very very excited about that. Emma is planning a huge girls' night with cousin Abby. I will hopefully include pictures of these events next time. Good night!