Snoopy's Updates

Erika's four-year ongoing battle with non-Hodgkin's and Hodgkin's Lymphoma after an autologous BMT and non-myeloblative allogeneic BMT.

Wednesday, October 25, 2006

A Long Afternoon At Stanford

My appointment was scheduled for 3:30pm, but as usual I didn't get seen until after 5pm. My oncologist is out for a month so I think my NP and the attending taking her spot are a little overwhelmed. I figured my oncologist was on a nice vacation, but I was told that she took the month off to finish up a book on Lymphoma and start one on Polio. I can't imagine taking a month off of work to do more work!

My counts were good enough to do chemo, but my red count was quite low. Normally someone with my level would probably get a transfusion, but my NP said I could continue Procrit instead and keep an eye on it. Since my dad was out last week, Chris forgot to give me the shot, which could have contributed to the drop in counts. Besides the Procrit shot, I also got the flu shot, so my arm is pretty sore. Tomorrow I will start my 5 day regimen of Neupogen shots. I'm keeping my fingers crossed that I won't have the extreme bone pain I had last time. I also had a chest x-ray done. My NP said that there didn't appear to be any change since the last one. I'm not sure if that's a good or bad sign. I think we will have a better idea when I have my next CT done.

Chris and I were able to make it out to the Nike marathon this past weekend. We were around mile 6 cheering everyone on. We had Francesca and Pebbles with us, which were the big attention getters. It was a good distraction for all the runners/walkers. Last season I was an honoree for the Hike for Discovery team and this coming season I will be an honoree for the Triatholon team. It's nice to be involved with TNT again, especially without the training part :P

These coming days we will be taking Francesca and Pebbles to some Halloween costume contests. Francesca is Snoopy and Pebbles is Woodstock.

Happy Halloween!!! Don't forget to turn your clocks this weekend!

Friday, October 20, 2006

SF Nike Marathon Participants...

Best of luck this Sunday, you will all be in my thoughts! I will most likely be somewhere on the sideline cheering you on, so please wave or say "hi" if you see me!

Tuesday, October 17, 2006

Hickman Or No Hickman?

Today I met with Dr. Spain, the surgeon who inserted my Hickman's. He was very surprised that I still had my Hickman from over two years ago and was wondering why I was there to see him. I told him that I was there to discuss the possibility of removing it and replacing it with a new one or possibly a port. He asked why I wanted to do that and I told him about the fevers I had been having and how my oncologist has been pressuring me to get it taken out for the last few months. His initial reaction was that I shouldn't get it taken out. He mentioned how a lot of doctors always want to have the Hickman's removed without a definite confirmation of infection and when it is removed the fevers don't change and the patient ends up going through the unnecessary procedures of having it removed and putting in something new. This is exactly what I've been fearing and has kept me from having it removed in the past.

If I do choose to have it removed however, it's a clinic appointment that takes 5 minutes. Apparently Dr. Spain would just numb the area with local anesthesia and pull the catheter. I'm not very comfortable with this at all! My first Hickman was removed this way (while I was on narcotics) and it was a horrific experience. The option of having it done in the OR (under sedation) is possible, but it would entail a whole day in the hospital (something he doesn't recommend). I would then have to wait at least two weeks before a new Hickman or port could be inserted. That would involve general anesthesia, just like any typical surgery.

So basically I'm back to where I was before...not knowing what to do. A part of me wants to take the chance in hopes that this could resolve the ongoing fevers that make me so miserable, but I think the chances of it not working are too high. In the meantime, I would have to get peripheral IV's to receive treatment, which is my biggest nightmare. There is also no trend/consistency to my fevers. One week I don't get any, the next week they're sky-rocketing, one week they're low grade. I feel that if this was an infection the fevers would be more consistent.

Given everything I know now, I'll probably discuss it with my oncologist when I see her again next week. I know ultimately the decision will be mine and it will be a difficult one...

Monday, October 16, 2006

A Not So Good Weekend

Thankfully I didn't have any big plans for the weekend, because I was not feeling well at all. Friday I started getting my usual fevers again, which lasted throughout the weekend. Saturday morning I woke up with a lot of bone pain. My whole body hurt so bad, I wasn't able to get out of bed until close to noon. Sunday the pain was a little better and today it's still lingering. My guess is that the pain is from my Neupogen shots. Usually I get the pain on my lower back, but this time it seems to be everywhere. I also got really bad mouth sores from chemo this time. It reminded me back to the days of my transplant and when I had GVHD. I was so spoiled with the last chemo, because the side effects were so minimal. This one is harder to tolerate, especially when I have to work.

Tomorrow I have my appointment with the surgeon that inserted my Hickman catheter. It will be interesting to see if he's able to pursuade me into removing it and inserting something new.

Monday, October 09, 2006

Treatment On Schedule

After two weeks of battling a cold, I never imagined that I would be getting chemo today as scheduled. Surprisingly my counts were good and since I no longer have signs of infection, my doctor gave me the choice of whether to get chemo today or not. Of course I said "yes." She said I would probably still have the cough and runny nose for a while so I just have to hang in there. I'm scheduled to go back again in two weeks and she suggested that I have a chest x-ray done at that point to see if we might see any reduction in the size of the tumor in my lung. She also assured me that the Lymphoma team has come up with about 10 alternative treatments lined up in case this was not to work.

Next Tuesday I will be meeting with the surgeon that inserted my Hickman catheter for both of my transplants. We're going to discuss removing my Hickman and possibly inserting a new one or a port. Nothing is definite yet, I merely suggested that I would consider it. It will be very difficult for me to part with my Hickman since I've had it now for 2 1/2 years. I feel like it's very much a part of me.

Work is going well although I do find it a challenge to make it through the day. The fatigue always hits me in the afternoon, which makes it really hard for me. Fortunately, Oracle has some really nice walking trails so I sometimes go out and walk around to get my energy back up.

We have started to work on the house again after taking a break for several weeks. We finally got new walls put up and the next step is probably painting. We wanted to get rid of the cottage cheese on our ceilings, but since it tested positive for asbestos it looks as though we're going to have to hold off on removing it. I can't wait until the fun part of remodeling like picking out paint colors, ordering the new floor, and getting some furniture.