Tuesday, March 03, 2009

Follow Up & Round 3

Last Thursday, I had my follow up appointment with the oncologist's nurse. The good news is that my numbers are good; my neutrophils were at 1,100 - 1,500 is considered normal. The unexpected news was that they want me back to start Round 3 of chemo on Monday, March 9. We were surprised to hear this as we thought I might get a month off like last time. Of course, hearing this with my emotions being so down, I did not take the news well. I wanted to desperately be out of the hospital just a few weeks ago, and now I have to go back so soon.

And contrary to what we were told in January, Round 3 will consist of 5 doses of chemo, not 3 doses. I will also be given a drug that I haven't received, so we are not sure how I will respond. I still have the option of receiving the chemo as an "out patient", and then only returning to the hospital when my counts go to zero like last time. After a long talk with Brett, we are considering the "out patient" plan so I can have some more time at home. This will require that we drive to UCLA 5 days in a row. Brett's parents and my good friend Erin have offered to help out, so that will take some of the stress off Brett. We have until this Thursday to make that decision. The oncologists wants to see my numbers this coming Thursday. If they are still low, she may delay Round 3 another week.

On the up side, it will be good to get this done. If I start Round 3 on March 9, I will definitely be out of the hospital for Jack's First Communion ceremony on May 9. However, I will most likely be in the hospital for Easter.

We spoke to the nurse about my depression, and she put me on some happy pills. The pills have really helped me sleep, but I haven't seen much difference yet in my mood and emotions. The nurse said that I must have been a very active woman prior to my cancer - she has no idea. I've been praying a lot for more patience, as we are almost more than halfway done. I realize I've been very fortunate in all this that I've responded so well, but still it has been long and hard to endure.

Last weekend the kids started Little League again, and I got to go to Opening Ceremonies and watch their first games. It was really hot this past weekend, and I was very tired with all the events. Still it was wonderful to spend time with the kids.

I will let you know when we start Round 3 as soon as we get the go ahead from my oncologist. In the mean time, please send prayers for my patience, that I can weather these last two rounds better than last time.

Thanks for the continued thoughts and prayers. KCA!

8 comments:

Norene said...

Happy Pills! I wish the whole world could be on Happy Pills. I hope they kick in soon for you. You're doing great.. Just try to relax and hang in there. Know that you are thought of often. Prayers, positive thoughts and patients!

chris torri said...

Hi Kelly.

In the beginning of my MS, the doctors felt very confident that the medication that I picked would work very well in stopping my progression, and even improve my disability. Then . . . something decided to do a u-turn. Next thing I know, it's a parade of so many different medicines that I felt like a human pharmacy. Oh, and then there was the blood draws--about 150 in the span of 3 years. They even tried chemo (Cytoxan). First they gave me some pills for the nausea--Pez would have worked better--and I ended up retching constantly for hours and hours, and even while I was so completely exhausted from dry heaves, that I would gasp for air. Finally the doctors said, "Oh . . .there's something stronger than the Compazine". I felt so down and angry. But once I started on a drug called Zofran . . . no more nausea or retching. With each medicine, it was agreed on a certain course with positive, but not so certain results. The course continually changed, and I went through a plethora of nasty side effects without gaining any ability back. I had enough--I was exhausted, overwhelmed, an emotional roller coaster and clinically depressed. In other words . . . I was a wreck (like a train wreck). I needed to re-evaluate. So, I went to see a specialist at USC-Keck medical center. He evaluated my condition, asked me about a hundred questions and recommended three different courses of treatment, based on how I wanted to continue. I went against the advice of one of my neurologists and picked a dangerous, but seemingly effective, brand new medicine with few side effects. Now, I just get one IV dose a month and the worst is that I am groggy most of the time. I take anti-depressants, as well as anxiolytics (anti anxiety meds). It takes about four to six weeks for anti depressants to build up in the blood to therapuetic levels. So, you won't feel anything right away. But, in time, if it's the right med, you won't not feel depressed, but you won't notice it as much. You WILL feel better, but that doesn't mean it'll feel like going to Disneyland every moment of every day--you'll just be able to cope a lot better and it won't bother you as much.

I wish you well, and I empathize with how you feel going through all this stuff. Any of us can only take so much and then it just gets beyond us and overwhelming. If you have family around and feel like you need a hug, ask. If you feel you can't hold your chin up any higher, just vent or let loose with the wetworks. Having a good cry while beating up your pillow is actually therapuetic and feels better afterward.

I wish the best for you, and you're just in a bad place in the cycle of contracting a fairly malevolent disease. When you hit the upswing of the cycle, it will seem like a cake walk.

Take care, and I wish good spirits for you soon.

-Chris

therextras said...

Prayers continuing for you, Kelly.

For whatever time it takes for the mood(up)elevators to kick-in, I hope you can be 'busy'. Whether physically or mentally active - and please try both - this.will.help.

Call it PT and OT.
Barbara

PS - have you read the book by that Senator - about how he kicked cancer?
I heard it was good.

Gators_Rule said...

Kelly,

I'm glad the happy pills are helping you get some sleep. That's a start! I really wish there was something more that I could do.

You have a whole lot of people pulling for you. Hang in there! If you need anything, just holler.

Linda

Kim said...

Thinking of you Kelly, you're in my prayers!
Love ya!

Bogart in P Towne said...

Almost there...still praying for you regularly.

gypsygrrl said...

thinking of you and praying for your daily ~ been out of the loop with the blog-reading but you and your family are in my thoughts and heart...

much love,
gypsy

Elizabeth said...

My prayers are with you as you struggle and with your little girl as well. My daughter, Sophie, is trying the drug rufinamide which is very new and approved for use in Lennox-Gastaut. So far, her seizures have improved a bit and we're hopeful for the first time in many years that a drug is helping her! When you speak to Dr. Shields you might want to mention it (if he doesn't already!)