Happy 2009!

I usually wake up these days around 4am. It just happens. I may go right back to sleep, I may listen to a guided imagery CD, or I may get on the computer for awhile before easing back into sleep. Today is New Year's Eve. The year 2009 is less than 24 hours away. There is much on my mind.

First, the gratitude...always the gratitude. I am humbled by the love I am surrounded with - it strengthens, comforts, and sustains me in ways that I am continually learning about. It challenges me to be better, to make choices, to share more fully...I constantly fall down on the job - but this love I feel reminds me that love itself is the only reason we are here anyway. I thank all of you for being a part of my life this year.

Christmas did not look the same this year but it was wonderful. The house was full of family and love and laughter. (especially when someone bought and wrapped the same gift twice for the same person and didn't realize it...) We had amazing food that I was able to eat and enjoy. I was tired but not sick and watching everyone open gifts and enjoying each others company was pure joy.

Even though my numbers were down on Christmas Eve and Christmas Day I was well enough to go to the Christmas Eve Service with a mask. It was hot in the sanctuary so I made the decision to go "hatless". I didn't realize what an impact it would have on me - it was more of a comfort thing in the moment. The hair loss doesn't bother me except as it influences perceptions and the way others may treat me (see earlier blog posts for more on this...) I'm not interested in a wig, and I wear hats occasionally for one of two reasons - 1) It is winter and my head gets cold and, 2) Other people are sometimes uncomfortable seeing my bald head. Well, so long number 2. (Stephani, it's only taken me the better part of 20 years...) In church on Christmas Eve, with no hat, no hair, I was able to be comfortable being just me exactly as I am without any pretense of hiding. Very freeing. It is not every day that you can feel comfortable looking like Uncle Fester...

But it hasn't been all joy and light on Rita Road. 2008 has probably been the most difficult year on record for too many reasons to list here. If I look at items on a stress scale there are very few that one of us has not experienced personally this year. So there has been some sadness and grieving mixed in with the holidays. There has been some real disappointment in the abandonment by people we had once thought of as friends. We continue to pray for them and hope they can find peace. The trials of this year have made us all stronger and it's the strength I want to take into next year...I'd like to leave the pain behind...

On Tuesday, December 30th I saw Dr. Kennedy. I tolerated the changes in chemo well and she was happy! (We really like it when she is happy). She is reducing the prednisone again so now I will be taking 20mg a day with pepcid, and the bactrim 3 times a week. Lungs still good. I am scheduled for my next chemo (#4!) on Thursday, January 8th at 8am...

Okay, so while I've been all over the place with this post it seems that I want to tie up loose ends. In re-reading what I just wrote I am tempted to delete it all and just say "Happy New Year!" but I won't. The theme that comes through to me is one of healing. Physical, emotional, and spiritual healing...for all of us. This is my wish as we move into 2009, along with hope, and moments of great joy. May we continue to face whatever comes our way with humor, laughter, tears, and love. Thank you all for your love and support. It means more than I will ever be able to say...

Back on Track

Hi again,

It feels like it's been awhile - and I guess it has. Most of December has been a blur. An interesting Advent...waiting, contemplating...praying... but now is the time for joy and celebration and peace.

I've been taking prednisone, bactrim, pepcid, etc. to deal with the pneumonitis and I had to take a little break from chemo. The break reminded me that when I am through, my energy will return. I was able to enjoy a part of the season that I wouldn't have been able to. Instead of my counts being down, I was able to do some shopping and go to a holiday concert. I even went to a midweek advent service. I stayed close to home and the outings were brief, but the turn of events was great. I did, however have some concern as to how my treatment would proceed and what that would mean for me.

I saw Dr. Kennedy on Monday December 15th and got the go ahead to resume chemo on Thursday December 18th at 8am (exactly two weeks later than scheduled). She had been away at a conference and presented my case to her colleagues so I got the benefit of expert collaboration and that is comforting. I won't take the cytoxin this round and there was an initial thought of changing the neulasta to neupogen, but now I'll still take the neulasta only in a slightly smaller dose. The cytoxin is the most likely of the drugs to have caused the problem but it could have been the taxotere. We won't know until I have chemo again but I should be on enough support meds to be safe. Then we would just shift again...add cytoxin, subtract taxotere and then add a new combination of chemo at the end of my scheduled cycles...but I get ahead of myself...I like a plan but all plans come with wrenches...

So Thursday morning went as smoothly as it could. We arrived on time, Dan picked us right up, numbers good, port accessed, pulse ox compatible with life....all set. Relaxing, uneventful, over. Thank God. Friday, back for neulasta shot and home just as the rain turned to sleet and snow.

So now it's just managing the fatigue and side effects. I just have to get some wrapping done. If all goes well I will be able to attend Christmas Eve Service with a mask on...and a completely bald head that I have to admit I am starting to like in its simplicity... (thank you Donna!).

I do have one funny story to share with you before I end this post. After we left chemo we made a quick side trip to Sam's Club. I look like I'm in my pajamas with sweat pants, flannel shirt and my "Fight Like a Girl" Breast Cancer Survivor baseball hat on. The "super-alert" salesperson assigned to sell professional portrait packages approaches me and asks me when the last time was that I had a professional portrait of myself. (I'm thinking my college yearbook picture but that has no bearing on the story) So without missing a beat, I said to the salesman, "I'm not really looking my best these days." To which he replied, "Oh, it wouldn't be today.....it would be this weekend." I'm sure I could spruce up by then but I think I'll pass anyway until I grow some hair...

Until next time....maybe one more before Christmas....

...A Funny Thing Happened on the Way to Chemo...

Hi again. You may remember from the last post that I was waiting to hear from Dr. Kennedy about the results of my tests and having chemo #3. There was something significant for me in getting #3 out of the way since it is the halfway mark. When I spoke to Dr. Kennedy she said that my chest x-ray was negative, my bloodwork, including blood and urine cultures were fine and that I should plan on having chemo on Thursday the 4th as scheduled. Since we spoke on the afternoon of the 3rd, she said to take both doses of decadron together. The temperatures have continued but I have been able to take tylenol at longer intervals. I could go about 16-18 hours before the temperature would break 100, but it would hover in the 99s. I took tylenol at 3:30pm and Dr. Kennedy asked that I not take another dose before she saw me in the morning before chemo (which was scheduled for 8am). The fever seemed to break after the decadron and by morning I was back in the 97.9 range..go figure.

We went to chemo feeling a little hopeful. It started out well - I didn't have to be weighed in or have bloodwork because I had just done all that 3 days earlier. (and I had lost a few pounds!). Dan (a favorite nurse) checked me in and paged Dr. Kennedy. She wanted some routine bloodwork, vitals, pulse ox, etc. and then would see me to write orders for the chemo....uh huh...temp was down, blood pressure and heart rate were up and resting pulse ox was 94. These were not particularly good indicators. My pulse ox should have been 100. So....when Dr. Kennedy came in she made me walk around the loop of the chemo room and the office with a pulse ox monitor on my finger. My response was to promptly de-sat to 87 while my heart rate went up to 149. I was still asymptomatic (no coughing or shortness of breath)

So chemo was cancelled and I had to go to the ER for a CT scan since they were so backed up. Dr. Kennedy was looking for a blood clot (pulmonary embolism) or inflammation of the lungs possibly caused by one of the chemotherapy drugs. Once in the ER I felt as if I had died and gone to ER heaven (probably not the best metaphor under the circumstances) As one who has worked in an ER for 27 years I can honestly say that my experience at Torresdale was remarkable. The doctor and nurse were both personable and competent and kept me and my family informed every step of the way. My nurse came to check on me in CT and reported back. When Dr. Kennedy decided to admit me to the hospital, the ER staff called for a room and my nurse took me upstairs herself within minutes of getting a room assignment on the telemetry unit.

The good news was that I didn't have an embolism, but the scan did show pneumonitis which is irritation or inflammation caused by one of the drugs. Dr. Kennedy said that she is glad that we caught it because it could be life-threatening especially if I had gotten more chemo. The damage can be reversed with meds but she wanted to talk to some colleagues about how to proceed with my treatment regimen and also wanted to get another mugascan to make sure that my heart was still ok. My lab work was off (white count of 20,000) but it was hard to say how much was affected by the decadron.

So I was admitted to telemetry so that I could continue to be monitored. My labs on Friday were all back to normal. My temp stayed low, blood pressure was good, and slowly my heart rate came back to normal (unless I walked around the hall without oxygen). With oxygen my pulse ox stayed at about 97. Because I can speak "ER talk" the staff gave me all the details I asked for about my condition. I won't bore you here but it was helpful to me. The muga scan was fine (thank God) and I had a pulmonary consult.

Here is what we came up with for the moment. Dr. Kennedy will take away the cytoxin from my chemo. She says that this is the most likely drug to be giving me problems, although it could be any of the others including the neulasta shot. She also is changing the neulasta shot to neuprogen and I will have to go for several shots every other day following chemo. I'll be taking prednisone, bactrim, and pepcid to try to clear up my lungs. I have an appointment to see Dr. Kennedy on December 15th and I will have a repeat CT. Hopefully, I will be able to have the new, improved, chemo #3 that week so we don't get too far off schedule, and hopefully it will be the right combo. I want to have the best possible regimen to avoid any recurrence, but I don't want the treatment to kill me or worse...so I am trusting her to know what she is doing. I know she will be vigilant.

While all of this sounds scary and crazy (and it is), it is a better outcome and treatment plan than most of the others so I am grateful. I have been listening to a series of wellness CDs for Fighting Cancer, Optimizing Chemotherapy, Managing Fatigue, Dealing with the Side Effects of Cancer and its Treatment, etc., and they have been very helpful. But that's a story for another time...

For tonight, as the temperatures drop my thoughts turn to the 60-70 people, about 50 of them youth, who are sleeping out in cardboard boxes on the front lawn of the church to raise awareness and money for the homeless. May God be with them and keep them warm. Thanks for listening....