Friday, January 30, 2009

Update Day 3

Two chemo doses down, two to go and I'm still feeling very good, so I thought I'd update while I can. I'm reuniting with a lot of the same nurses from last time and everyone has been thrilled to see me doing so well. I guess when I arrived last November, and going through induction chemo, I looked pretty pale and sickly. It's wonderful to hear their observations and encouragement.

My Mom is staying with me right now and we've enjoyed catching up. The plan is that I will get my last dose of chemo on Saturday night (they administer it in the evening so I can sleep through most of it) and will be discharged on Sunday. Starting Monday, I will have a home health nurse come to the house each day to draw blood and flush my PICC line (which will be staying with me for about a month). Once my white blood cell and platelet levels drop and I become neutropenic, I will be sent back to the hospital to stay until the levels come back. This should be about 2 to 3 weeks. Hopefully shorter! ;)

So far I'm sleeping a bit more than normal, but my energy level is good. I had a reaction to some of the tape they used on my PICC line in that I broke out in blisters, but so far no rash! (knock on wood!) They have given me an antibiotic ointment for the blisters, but they are really very minor. Also, the nausea is at bay for now, so that is good. Those meds must be working.

Thanks for the continued prayers - I'll update again if I can.


Wednesday, January 28, 2009

Update - My entrance was a lot less flashy

Yesterday, after dropping off the kids, Brett and I made our way up the 405 to UCLA in time for my PICC line placement at 9:15. The procedure went a little long, and I made it to my ECHO heart test at 10:40. We arrived at Admissions at 11:30, and told a bed was not available. They suggested waiting in the cafeteria, but Brett and I decided to chance it and take a little longer to walk into Westwood and eat a Chili's. The decision was a smart one because when we returned at 1:30, we were told we were still waiting on a bed. Admissions got our cell and told us to walk around campus.

Brett and I decided to walk into Westwood to see a movie, but everything available started at 4:30. Instead we sat at Starbucks. (My thought here was it was my last chance to enjoy foods they wouldn't allow in the hospital.) We returned to Admissions at 4:00, only to be told the bed still wasn't available and it was looking like 5:00. Around 7:30, I finally got into my room, and as it turns out, I'm in the same exact room I was in last month. My lucky number 11.

We spoke with the doctor once we got into my room and learned my chemo this time will be a smaller dose, based on my last bone marrow biopsy, which was very good. We were told that I'm responding extremely well to treatment. The doctor even said, "your type of cancer is curable." I like that he used the word "curable" instead of "treatable." Unfortunately, they did not have my ECHO results, so we couldn't start chemo last night. As I type this, we are still waiting on the cardiology report and I should start chemo around 2:00.

So that is all for now. Looks like I'm truly KCA! I'll keep you posted.

Monday, January 26, 2009

Heading back for Round 2

I'm not sure which is worse; being immediately taken from your bed at home to the hospital and being told you'll be there for a month, or knowing and having time to plan ahead as you are go back to the hospital for another month. In the first instant, you are in too much shock and still adjusting to your diagnosis. In the second instant, you know what to expect and you can't get out of it.

The last couple of days have been tough for me sleep wise. I've been up late worrying about the kids and how this will once again disrupt their normal lives. That part hurts the most, and knowing I won't see them for a while. Brett will be with me most of the time, so that is a comfort and something I look forward to. I try not to think about the procedures, because I know eventually I will get my energy back. This has to be done, and we may as well get started.

UCLA called this morning and scheduled the placement of my central line at 9:15 a.m., and my ECHO heart test at 10:15 a.m. I was quite surprised because I imagined we'd just drive up there, casually check in, get cozy in my room and then maybe get around to the procedures and such sometime in the afternoon, but it sounds like they mean business. Brett and I have learned from my last stay, and will not be giving out my phone number. If this chemo round is anything like last time, I should be feeling bad half way into it. I'm not taking nearly as much luggage (or clothes) and will try to update here when we can.

UCLA says that I will be there to receive 5 days of chemo via IV, and when that is done I will come home. They estimate that I will be home for 5 days with a nurse visiting every day until I get neutropenic (when my immunity is very low.) Once that happens, then I will be back in the hospital for another 3 weeks. It seems weird, and wrong to get that "down time" at home, but I keep reminding myself that UCLA does this all the time, so they must know what they are talking about, and they must trust that I will be fine. If that is the case, I should be home on Monday, and back in the hospital February 5.

Thank you all once again for your thoughts, prayers, gifts, and for those of you helping us out with the kids. After this round, I'll be half way to being done. I'm looking forward to passing this next hurdle, and truly appreciate having you all on my side as we continue to Kick Cancer's Ass (KCA!)

Thanks again - I'll keep you posted.

Friday, January 23, 2009

Jenelle giving kisses to a friend

This week, I got an e-mail with these photos of Jenelle last week at school. Apparently, she was being silly and was giving her classmate lots of kisses and raspberries. Not sure her friend is liking the attention, but cute none the less.
Thought I'd share with all of you. Enjoy!

Thursday, January 22, 2009

Tough week for Jenelle, and update on Mommy

This has been a tough week for our Jenelle. At 6:30 a.m. on Monday, I woke and heard Jenelle having a seizure (grand mal). Brett and I were at her bedside right away, but we weren't sure on how long she had been seizing. After two minutes, I gave her Diastat and the seizure eventually stopped. Jenelle was pretty wiped out for the rest of the day. We aren't really sure what brought on this seizure. And of course, I've been sleeping a little lighter since this happened, as I keep my ear open to listen to her sleep.

Later the same day, Jenelle had a small accident in which she burned her finger. Brett had just placed a plate of lasagna on the table straight from the microwave, and Jenelle reached for it with her hand (she was hungry). It appears to have been a second degree burn with a blister on her middle finger. The problem has been keeping it clean and dry so it can heal. I've kept it taped and wrapped to her other finger, but she likes to put it in her mouth.

This afternoon we are taking her to the doctor to have it checked because it seemed really red last night. We want to avoid infection at all costs because it can easily get into her system and quickly become a staph or blood infection. We hope we can get on anti-biotics today as a precaution, because having Jenelle ill is the last thing we need before I return to the hospital next week.

As for me, I am still fighting a cold. UCLA finally put me on a 5 day Z-pak Tuesday, and while my sinuses are clearer, I have a horrible cough. I still have a few more days to get well before next week, and I'm keeping my fingers crossed that we won't need to delay my next round of chemo.

Brett and I have been frantically trying to prepare for my departure next week. At least this time we have some warning, and know what to expect. Oh, and my hair has started to grow back. Unfortunately, it will be gone after next round, but it is nice to see that it knows what to do! The down side of my hair growing back is that the stubble itches ... a lot! As I stick around the house, I've been going without a scarf or hat. The look was useful to help scare off a solicitor the other day when I opened the door forgetting to cover my bald head.

Anyway, I am anxiously awaiting next week, and hope that all goes according to schedule. Please keep those positive thoughts and prayers coming that this cold will go away so I can rest up for next week. And please say some prayers that Jenelle can stay seizure free while I'm gone!

Thanks again, and we are still KCA!

Sunday, January 18, 2009

The sick bus is parked at our house.

Wednesday, Jenelle had to be picked up from school because of a fever and vomiting. She seemed fine except for a runny nose, but we kept her home Thursday just in case. By then, it was just a runny nose for her, and I started to feel congested and sick.

As a precaution, I called UCLA to get their thoughts on what to do if I got worse. The next day the nurse called back to tell me to page her over the weekend if my mucus had color or if I were to get a fever. They really want to avoid using an anti-biotic if we can, and told me to use regular over the counter drugs. So far this weekend, I have a normal cold and no signs of infection, but still it isn't fun. As a bonus, Brett started to get sick on Friday. Jack has an immune system of steel, I must figure out how he manages to avoid everything.

I still have some time before going back to the hospital, but I am worried that I will be as strong as I was after this little set back. I hope this cold goes away quickly so I can have some time to recover and get stronger before starting Chemo on January 27. I also hope this doesn't delay it.

Please send some "get well" prayers our way. And special prayers that this doesn't get worse for me, or go into pneumonia. That's all for now, I'll update more later.

Wednesday, January 14, 2009

Some Photos to Share

As if fighting cancer and taking care of a special needs child isn't enough of a challenge, our home computer has "crashed" three times since my diagnosis in November. You can't imagine how annoying it has been to have to reinstall photos and Itunes and e-mail and such. Anyway, today I took a gamble and downloaded some photos (and copied them to Shutterfly and CD so I'm confident I won't lose them again!) I thought you might enjoy seeing some from Christmas and Jack's birthday party.

Each year for Christmas Eve, I buy the kids new PJs and force them to wear them. Luckily this year, I hit a sale and got the kids PJs about two weeks before my diagnosis. And, as tradition would have it, we take photos on Christmas Eve in front of the tree, in our Christmas PJs.

Jenelle is really starting to recognize the camera, and has many different looks. Jack is a ham as usual.

Jenelle really getting into the photo shoot.

The best one in my opinion.

Or maybe this one is the best.

Jenelle getting a little bored with all this.

Jenelle saying "She's done".

Jack on Christmas Morning reacting to his "big gift" from Santa.

Here we are celebrating Jack's birthday at the bowling alley last Saturday.

Me and Jack - the birthday kids!

Thursday, January 08, 2009

Results From Today's Follow Up Appointment

I had my second follow up appointment today and it went really well. My WBC and RBC levels were almost double what they were on December 26. In fact, my white blood cell count is almost normal. Basically my blood work this morning was perfect, so again I didn't need a blood transfusion or platelets (which made for a shorter visit, which made Brett happy.)

They want me to stay on the vitamin A pills (ATRA medication) that I've been taking for another two weeks, and we scheduled my admission date for Round 2 of chemo for Tuesday, January 27. That will give me a two more weeks at home. For round 2, the chemo meds will only last 5 days and I should be in the hospital a total of 3 to 4 weeks again. We were told with each round of chemo, it's a little harder for the body's immune system to "bounce back". Each round will be shorter (5 days, then 3 days, then 1 day) but the recovery time will be longer each time.

I asked a lot of questions today and learned that in all I have 3 more rounds of chemo. Technically, I am in remission right now, but obviously you don't cure cancer with only one round of chemo. The nurse told me that my last bone marrow biopsy was very good in that there was evidence of bone marrow (meaning my body is making it again after chemo) but no evidence of cancer blasts. That is all very good news.

Thanks for the continued thoughts and prayers! We're still KCA!

Sunday, January 04, 2009

New Routine = "New" Normal

I looked in the mirror last night and realized with my bald head, and my ears that stick out due to lack of hair... I look like my Grandpa Trawick! On the positive side, I am told that my bald head is a "pretty" one and that I have a nice, round head. I wholeheartedly agree.

Things have been going well since my being home. My fever finally went away the day after Christmas, and I am getting stronger everyday. Even my sciatic nerve is getting better. I am getting out more; we go out to lunch a lot during "off" hours (so as to avoid crowds), and today I went to Jack's basketball game. I also drove my car for the first time since before Thanksgiving for a quick trip to the local Blockbuster (literally half a mile from home.) Today Blockbuster, tomorrow Starbucks! ;)

While I know Jenelle has changed me in so many ways, one of the "new Jenelle lessons" I have come to realize is my ability to adapt to "new normals." As an A type personality, you can imagine the shock to my routine in the following weeks after Jack's birth. It's amazing how what you think is going to happen goes out to door with a new baby. You learn, even us "A type" personalities, to be flexible. Then we had Jenelle, and a year later learned very quickly how to deal with many changes in our routine. We were constantly learning our "new" normal.

That is what being home has been like for me; learning a new routine and a new normal. But I must say, I think because of all the flexibility we've learned to accept because of Jenelle, this "new normal" is easier to accept. Or perhaps I just know not to fight it, and go with what works.

Brett has been amazing. He is literally taking care of 3 kids at times (myself included) and I think is on his last thread of sanity. Thank goodness the kids go back to school tomorrow. Having our "old" routine back will be a blessing to this "new normal" that we are getting used to.

My next follow up appointment is this Thursday. I'm hoping that I'll have at least one more week before having to return for round 2. At least through the weekend, as we are having a small party for Jack's birthday on Saturday (which also happens to be my 39th birthday (i.e. 40 minus 1!) I am actually looking forward to my 39th year, as I know I will only get better and will be able to celebrate the big 40 in remission and with a new healthy outlook on life (and some new hair!) That is the perfect new year's resolution, don't you think?

We're still on the KCA campaign. Hope your new year is going well. Thank you for the continued positive thoughts and prayers.

Friday, January 02, 2009

Jenelle lost her second tooth!

And we can't find it. She may have swallowed it in her sleep. She seems more comfortable now that it is out, but I'm sure it is an odd experience for her because she just doesn't understand.

We'll have to have Jack draw a picture of the tooth so Jenelle can get another visit from the tooth fairy. Should be fun.

Also, today Jenelle's new wheelchair is set to be delivered. It will be nice to have it in time for school on Monday.

Thursday, January 01, 2009

Happy New Year!

Today is Jack's 8th birthday, and he has been more excited about that than he was for Santa! I've been trying to get out more, so last night we had dinner out at a local restaurant. We celebrated "New Year's" New York style (aka 9:00 p.m. Pacific Standard Time) and got the kids to bed early.

I am doing well with a little more energy, but then I have my tired moments as well. The sciatic nerve is still bothering me, but my neighbor (a nurse) helped me work on it a few days ago and she relieved some of the pain.

Jenelle is well on her way to losing a second tooth. Poor thing just doesn't understand why it is loose. She has been good and busy around the house.

We are looking forward to a better 2009 with good health as our top priority. Hope you all have a wonderful New Year as well!