Thursday, April 30, 2009

The PICC line is gone

My home health nurse just left after removing my PICC line. We tried our best but the skin underneath the dressing was very red, very infected and there was an awful odor. We are waiting to hear from my doctor and its possible I will need to start anti-biotics as a precaution. My skin burns a lot and itches. It was one of those better safe than sorry situations. I'm somewhat relieved, but somewhat sad because now I'll have to be poked a lot.

I'm not sure how this will affect my next chemo. Because my course will only be two days, I may not need another PICC line, but will just have them insert an IV each day. We're almost at the end of this. I'm getting anxious for May 11 to get here.

Brett and I visited my work yesterday and it was wonderful to see everyone. I walked into my office and it was like it was the last day I was there; the calendar was still on November, my "to do" list was still by my phone, and Halloween candy was in a dish on my desk. It's hard to believe it's been almost 5 full months. I can't wait to get back to work, and it sounds like they have plenty of work for me to return to.

In other news, I should have remembered last update to say "knock on wood" because Jenelle was sick last Friday and kept us up until 2:00 a.m. with vomiting. She never had a fever, and was fine on Saturday and holding down her food. We think it may have been something she ate.
Luckily her seizures remained stable, even though she had thrown up her nighttime meds. The good news in that is that none of the rest of us caught her little bug (knock on wood!)

That is all for now. Thanks for the continued thoughts and prayers. KCA!

Friday, April 24, 2009

Just a small update and some hair-raising progress

No news is good news and there hasn't been much to share for an update for me or Jenelle. Things have been going well for me and I am getting out more and doing things around the house. My numbers are still not completely normal, but they are close enough not to worry.

I have been having some trouble with my PICC line recently. It seems the skin is breaking down underneath the tagaderm (a clear plastic they use to cover the line to keep out bacteria.) It's an allergic reaction of sorts, and can happen when you've had a line in for a while. I've had this particular PICC line since January 27, and am hoping I can hang onto it for another 8 weeks to complete my IV chemo. The skin underneath is blistering which can lead to infection if it gets much worse. My home health nurse is making it her mission to help me keep this line and is doing all she can to keep it from getting infected. Yesterday, she applied a special dressing (I forget the name) which stung a bit, but helps to dry out the skin to help it heal. Have I mentioned yet how fantastic my home health nurse is? She is truly a saint. If you'd like to say some special prayers that this little skin problem doesn't get infected, that would be great.

And now for some fun... I've sort of been documenting the growth of my hair and thought it was time to share some of the photos. After starting chemo in December, it took two and a half weeks for my hair to fall out. About a week before I lost it, a male nurse I had one day made a comment to me that I thought was funny. He said that I was such a "pretty woman" that he feared I wouldn't handle losing my hair very well. His suggestion was to simply get it over with and shave it off. Obviously he hadn't gotten to know me well, because I am probably the least vain person I know. I laughed and told him I was actually looking forward to it falling out because I had been wanting to change my hair color anyway. On that day, I wasn't ready to shave it, but still it didn't bother me that it was going to be gone for a while.

Recently, my hair is really getting a bit thicker. So much so that I have been able to wear baseball caps instead of scarfs. The hair growing in is soft, and it appears to be the same color as Jenelle's. But I'll let you check out the progress for yourself... see the photos below:

January 2009
March 2009
April 24, 2009

See, I'm not modest at all! ;)

Thanks for the continued thoughts and prayers. KCA!

Wednesday, April 15, 2009

Easter Photos

Jack having fun dying Easter eggs.

Mommy & Jenelle

Checking out the loot from the Easter Bunny.

Jenelle thinks Jack is a ham.

All dressed up for Easter at Grandma's.

Jenelle hunting Easter eggs.

Jack hunting Easter eggs.

Daddy finds eggs for Jenelle.

Daddy gets Jenelle to hold an egg.

The cousins after the big egg hunt.

Friday, April 10, 2009

Follow Up Appointment

As you can imagine, our Angel Fan hearts are heavy since hearing yesterday's shocking news about the deaths of rookie pitcher Nick Adenhart and two of his friends. All at the hand of a drunk driver driving on a suspended license. Having thought of my own mortality a lot in the last few months, a tragic loss such as this makes you realize life is short. We are hugging the kids just a bit tighter today, and keeping the families, and the Angels in our thoughts and prayers.

With heavy hearts, we drove to UCLA yesterday for a follow up appointment with my oncologist. On Wednesday, I got a disturbing call from UCLA where they were wanting to "confirm my appointment time for chemo." I know my blood work numbers are good, but I didn't think we were starting chemo this soon. As it turned out, my numbers yesterday are still not above normal, so I could not start chemo even if the doctor wanted me to. I reminded Dr. Territo that I want to be well for Jack's First Communion on May 9, so we scheduled the start of my final consolidation round of chemo for May 11.

She said this would give me enough time to recover, and she was concerned with Jenelle having a recent sinus infection. If by chance I get sick now, I can recover fully before the next round. My final chemo will only be two days of infusions, and again with the 2 to 3 weeks for immune system recovery. I asked her about a date to return to work, but as it turns out, after my infusion round, I will be starting chemo pills. She recommended that I not return to work until we get a handle on how I will handle the medication. She said late July or August was more realistic, and that I should consider returning part time at first. It all depends on how well I recover.

Lately I get tired very easy. The doctor said that was very normal. I was concerned that maybe it was something to do with my blood. I asked her if it was too soon to start exercise so I could build back some muscle, and she said it was OK as long as I started very slowly. She recommended short walks with a partner at first. As you can imagine, chemo really takes a toll on the whole body, and at times I'm morning the loss of my old strength.

So everything is going as scheduled, and we are finally in the home stretch. I am very anxious to be my old self again. I realize I am very lucky to have survived this, and am just trying to be patient with everything. Life can be short sometimes, and sometimes we get a second chance to celebrate it. On this Easter weekend, I hope you celebrate your family and friends, and hug your loved ones just a bit tighter.

I'll keep you posted. KCA

Tuesday, April 07, 2009

As promised... some photos

As promised, here are some photos that have been in my camera since January. Below we have Jenelle finger painting with Aunt Nicki. She loves to make a mess.

Speaking of messes, here is Jenelle playing in her room by herself and making a mess with her toys. This is Jenelle's new thing in that she likes to go off to her room to play by herself. My Mom says this is just another step in the development process, when children start to play independently - yay!

This photo was taken back in February after we had given Jenelle a bath.

And of course, we have to have a photo of Jack! Here is Jack after just finishing a Lego Star Wars toy he got for his birthday. We made him follow the instructions and put it together on his own. After a while he said, "Mom, this is a lot like math (his favorite subject.)" He was very proud when he finished it.

Monday, April 06, 2009

Things are good!

I am sitting here right now waiting for my home health nurse, or as I like to call her, the home health vampire. I am due for another blood draw this morning. Friday evening, the nurse called me with excellent news - my WBC count was 3.8 (normal is 4.5) and my neutrophils were still at 600. I was much more comfortable at home this weekend and much less anxious second guessing myself. In fact, I felt so good on Saturday, I went with Jack to a friend's birthday party where I got to mingle with parents from his school. It was a lot of fun, but I got tired very easy. I think I should start walking and slowly exercising now as it might be really hard to get back into my old work schedule when the time comes.

Jenelle's cold got worse on Friday, and she had a lot of color coming out of her runny nose. Brett took her to urgent care on Saturday morning where they placed her on an anti-biotic for a sinus infection. She was a lot better on Sunday and slept really well last night. I myself am still on an anti-biotic, so I think that has helped me avoid her little bug. I washed my hands a lot this weekend and avoided Jenelle the best I could. She is still such a happy little girl and I watched her move all weekend from her room to the living room, from toy to toy. This improvement is exciting to see as she plays so well independently. Brett said she'd play in the bathroom if we put toys in there, but I think he's wrong. She truly enjoys her room, and the sunlight that enters it.

I have some photos to post, but need to get them onto the computer. My hair is really growing back now and I can almost go without a scarf. I have an adorable photo of Jenelle playing to share. I'll get them up soon.

Thanks for the continued thoughts and prayers. I'll keep you posted! KCA!

Wednesday, April 01, 2009

Still at home...

I've decided that there is no difference in being isolated in a hospital as compared to being isolated at home. The only difference is seeing the kids each night, so that is a plus, but I am starting to get stir crazy. I'm knitting, and updating our photo albums, and I think I've seen every movie there is to see on television (even channels where there are commercials!) At least I am at home... still.

Yesterday I had a blood draw, and I assume if my numbers were critical, I would have heard from the doctor today (knock on wood!) I really like my home health nurse, she takes really great care of my PICC line and has a great sense of humor. Thank God for that PICC line, otherwise I'd have a lot of needle pokes. My home nurse is good about calling me with my numbers, but I told her this time I only wanted to know when I was well enough to go out in public again. I figure why dwell on numbers I can't control.

Which reminds me, I forgot to tell you all some good news. While I was getting outpatient chemo, my oncologist took some blood to run a chromosome test to check for any cancer cells. The good news is that the test result was negative, and I am still cancer free! I asked my oncologist if I would have to have another bone marrow biopsy, and she said she hoped to avoid another one as long as my blood work was clear. Apparently now with these new chromosome tests, they are as accurate as actually testing my bone marrow, so that is very good news.

And unfortunately, it seems our little Jenelle has a cold. It doesn't seem too serious, no fever, but because she is Jenelle, she cannot really blow her nose or cover her cough. Tonight I was really bummed when she got home because she kept coming to me to be held. I've isolated myself in our bedroom so that I can avoid any exposure to her germs. Brett has been amazing and pretty much taking care of the kids by himself. Please send some prayers that Jenelle gets over this cold soon, and that I don't catch it.

That is our update for now. Thanks for the continued prayers. KCA!

Edited to add: My home nurse just called and my numbers look really good; WBC at 1.8 (normal is 4.5), and she thinks my neutrophils were 600 (500 and less and I should be in the hospital) She will bring them to me tomorrow when she comes for my next blood draw.) My immune system is still weak, so keep praying I don't get Jenelle's cold. Thanks!