"Have no fear for what tomorrow may bring. The same loving God who cares for you today will take care of you tomorrow and every day. God will either shield you from suffering or give you unfailing strength to bear it. Be at peace, then, and put aside all anxious thoughts and imaginations." - Francis de Sales.
Today I am filled with gratitude. Most days I am filled with gratitude, but as we approach Thanksgiving this year I am acutely aware of all of my blessings. The words of encouragement above were on a little pocket card that my mother sent to me a few weeks ago. This simple gesture was one of the most supportive things my mother could have done. I'm sure that she doesn't even know it because she always feels that she "should be doing more." I am grateful that my folks are already settled back in Florida until the summer because they really enjoy themselves down there. I thank God for the familiarity of our ongoing conversations via e-mail, the knowledge that I can't stop them from worrying but I don't have to live it with them, and for the hope that when they return I will be much further along the path of healing.
As I rejoin this post, Thanksgiving is already past - time goes by so quickly. We spent a lovely few days with family in the country. It was very relaxing and the food was great. Like a much needed oasis. And then we came back.
I've seen Dr. Kennedy twice - once for my regular follow-up visit, and once for an unscheduled visit to try to figure out why my temperature keeps going up and up and up unless we have a tylenol moment. I've also developed an annoying little cough this cycle...had to have CBC, blood and urine cultures, and a chest x-ray...Trying to stay centered is difficult at times considering all the possibilities. But my "team" is always there to remind me that my body is strong and is helping to heal itself, and that no matter how many wrenches are thrown into the system, that we can deal with them. I thank God every day for the people who are walking with me.
I am waiting to hear from the doctor to see what our game plan will be and if I will be able to get chemo as scheduled on Thursday, December 4th. I want to continue with the regimen of drugs that will give me the very best prognosis, but depending on what she finds, she may want to change or alter the meds...we'll see....
Keep a good thought...I felt like writing a little something but now I really have to take a little nap......the last time I did that I came back and it was after Thanksgiving.....and this post was all a mishmash so I will end here and start a new one when I am more rested.....
Wednesday, November 26, 2008
Friday, November 14, 2008
Chemo II...The Saga Continues...
On Thursday, November 13th we arrived at Frankford Torresdale at 8am for my second chemo. I wasn't quite as anxious as I was the first time because I knew the ropes. It was amazing how some of the nurses and even the volunteer remembered our names. One of the volunteers commented that I still had hair. When I said, "Not for long," she said "You might not lose it." I told her that I was pretty sure I would, so she remarked that I had nice eyebrows and maybe I wouldn't lose them. As I laughed and thanked her, I realized that she didn't have any eyebrows, they were drawn in with a pencil...
We got our private corner again and didn't have to listen to the TV. One of my favorite nurses (already) came over and told a story of the LOUD family that had been in my corner on a different day and watched nothing but Jerry Springer and Court TV. A little glimpse of hell...
Since I was so wordy in my last blog I'm going to keep this short. I am 2 down and 4 to go...that is one third done with this treatment cycle...
When I mentioned that to my nurse she said, "then this is your third treatment?" And I said, "No, that would mean that I was halfway done..."
I silently hoped that the pharmacy had mixed my meds. (Just kidding, this particular nurse was a bit distracted - listening to a tiny hippopotomus that sang the Christmas song with the same name....and talking with a vendor about her experience visiting a psychic...in between that she gave good care and while she was doing other things or at lunch, the other nurses were all very attentive)
Dr. Kennedy came through the chemo room several times and stopped by. She is clearly the doctor to have. She is smart, compassionate, and a good advocate for her patients. And all the nurses know that they had better be on top of her patients...that's not a bad thing...
On Friday I went for my Neulasta shot, and now I'm left to manage side effects and ride the wave until a week from Tuesday when I have my follow-up appointment with Dr. Kennedy. If last time is any indication, I should finish my support meds on Sunday and hit a wall on Monday. The rest of the week is dealing with a rapidly dropping scary low white count so I have learned that I will not be attempting any outings during that time or having any company. Hopefully, by the end of next weekend my numbers should start to come up again and I will feel stronger...Thanks for reading, I'll write more as the mood strikes...
We got our private corner again and didn't have to listen to the TV. One of my favorite nurses (already) came over and told a story of the LOUD family that had been in my corner on a different day and watched nothing but Jerry Springer and Court TV. A little glimpse of hell...
Since I was so wordy in my last blog I'm going to keep this short. I am 2 down and 4 to go...that is one third done with this treatment cycle...
When I mentioned that to my nurse she said, "then this is your third treatment?" And I said, "No, that would mean that I was halfway done..."
I silently hoped that the pharmacy had mixed my meds. (Just kidding, this particular nurse was a bit distracted - listening to a tiny hippopotomus that sang the Christmas song with the same name....and talking with a vendor about her experience visiting a psychic...in between that she gave good care and while she was doing other things or at lunch, the other nurses were all very attentive)
Dr. Kennedy came through the chemo room several times and stopped by. She is clearly the doctor to have. She is smart, compassionate, and a good advocate for her patients. And all the nurses know that they had better be on top of her patients...that's not a bad thing...
On Friday I went for my Neulasta shot, and now I'm left to manage side effects and ride the wave until a week from Tuesday when I have my follow-up appointment with Dr. Kennedy. If last time is any indication, I should finish my support meds on Sunday and hit a wall on Monday. The rest of the week is dealing with a rapidly dropping scary low white count so I have learned that I will not be attempting any outings during that time or having any company. Hopefully, by the end of next weekend my numbers should start to come up again and I will feel stronger...Thanks for reading, I'll write more as the mood strikes...
Hair Today, Gone Tomorrow...
So it's been an interesting week. I've had more energy because my numbers have been coming up - just in time for my second chemo, and the more bothersome of the side effects have leveled off. I took a breath and appreciated the beauty of this season and noticed that the leaves were all letting go and falling - still pretty in the air and on the ground, but clearly marking the transition to a winter that is just around the corner. And I realized that as this was happening in nature, there was a striking parallel in my life. My hair, too, has been "letting go and falling" - almost overnight. Those of you who know me well know that losing my hair was not a major concern of mine -it is not a process that hurts, it eventually comes back, and it is a visible reminder that the drugs are working, and healing, and cleansing my body of any stray cancer cells. But there is something to be said for the visual and its impact.
I have a lot of hair even when it's cut short and within a few short days I've lost enough hair in the shower and in my brush to create two wigs. That leaves me with some but not much hair for my head. The hats are ready, no wigs for me, and hopefully when I can be around people again this cycle we can have a small ritual healing celebration to mark this event. As much as I am ok with the prospect of baldness, the reality of it brings up a concern about the change in perceptions - others' and my own.
Right now, I have no illusions that I am fighting and healing from cancer. I feel it every day in my body and soul. But I am still me - I laugh a lot, I recognize myself in the mirror, and I have interests and (can occasionally have), conversations about things that have nothing to do with bodily functions or medically related topics. But as I look in the mirror and begin to see my scalp I know that in a couple weeks I will look very different. I will see a cancer patient. Because I've had a chance to get used to living with this disease I am hoping that whatever feelings might come up for me will just be part of the rich experience of this journey. My concern (if I even have one - you are just reading early morning musings of someone the day after chemo) is that while I have been very much aware of the cancer and the treatment, etc., unless I'm having a bad day or moving slower, most people would have no clue that anything was going on with me. As a matter of fact, last Sunday in church folks were commenting that they "couldn't believe how good I looked." Then my hair started falling out. My experience with others has been that friends, family, acquaintences, feel better when "the patient" looks well and is upbeat. I'm pretty comfortable feeling how I'm feeling and letting people know what is going on with me. I don't feel I need to keep up any pretenses. But when people look at me and can't help but see a cancer patient, I get a little concerned that that is how I will be treated, that some won't be able to get beyond that and it may be too uncomfortable for them.
I suppose we'll cross that bridge when we come to it. Right now, with the image of falling leaves/hair and the reminder that winter is just around the corner I am nesting. I am looking forward to the holidays this year. While they will look very different from holidays past they will be full of love and gratitude and such joy. Having children around is such a blessing. As it stands now both Thanksgiving and Christmas fall at a time when my numbers should be fine...
I remember the day my mother had her second mastectomy. It was the beginning of December (1979) and I was sitting in the surgical waiting room with my father and Christmas music was playing. I love Christmas music, but I kept thinking that if something went wrong, or if this didn't go well then I would always associate it with Christmas music. Luckily things went well and my mother and I still enjoy listening to Christmas music together. So yesterday when I went to my second chemo and heard the Christmas music playing I felt some strength from those in my family and others I've known who have gone through this before me. It was very comforting. I am also comforted by the season of gratitude marked by Thanksgiving and the anticipation of Advent and the love and joy and promise of Christmas. And instead of the bleakness of "post holiday winter" I am looking forward to a time of hibernation and healing. I will have the opportunity (unencumbered by the obligations of work, etc.) to spend cozy time indoors - maybe with a fire, maybe watching old movies or something that will make me laugh, reading when I can, napping, staying in touch through facebook, e-mail, the blog, and occasionally phone calls or a visit here and there. And in the spring when the chemo is over (God willing) and we begin to move on to radiation, and the trees are budding and the earth is in renewal with the promise of rebirth and resurrection...my hair will slowly but steadily return...
I have a lot of hair even when it's cut short and within a few short days I've lost enough hair in the shower and in my brush to create two wigs. That leaves me with some but not much hair for my head. The hats are ready, no wigs for me, and hopefully when I can be around people again this cycle we can have a small ritual healing celebration to mark this event. As much as I am ok with the prospect of baldness, the reality of it brings up a concern about the change in perceptions - others' and my own.
Right now, I have no illusions that I am fighting and healing from cancer. I feel it every day in my body and soul. But I am still me - I laugh a lot, I recognize myself in the mirror, and I have interests and (can occasionally have), conversations about things that have nothing to do with bodily functions or medically related topics. But as I look in the mirror and begin to see my scalp I know that in a couple weeks I will look very different. I will see a cancer patient. Because I've had a chance to get used to living with this disease I am hoping that whatever feelings might come up for me will just be part of the rich experience of this journey. My concern (if I even have one - you are just reading early morning musings of someone the day after chemo) is that while I have been very much aware of the cancer and the treatment, etc., unless I'm having a bad day or moving slower, most people would have no clue that anything was going on with me. As a matter of fact, last Sunday in church folks were commenting that they "couldn't believe how good I looked." Then my hair started falling out. My experience with others has been that friends, family, acquaintences, feel better when "the patient" looks well and is upbeat. I'm pretty comfortable feeling how I'm feeling and letting people know what is going on with me. I don't feel I need to keep up any pretenses. But when people look at me and can't help but see a cancer patient, I get a little concerned that that is how I will be treated, that some won't be able to get beyond that and it may be too uncomfortable for them.
I suppose we'll cross that bridge when we come to it. Right now, with the image of falling leaves/hair and the reminder that winter is just around the corner I am nesting. I am looking forward to the holidays this year. While they will look very different from holidays past they will be full of love and gratitude and such joy. Having children around is such a blessing. As it stands now both Thanksgiving and Christmas fall at a time when my numbers should be fine...
I remember the day my mother had her second mastectomy. It was the beginning of December (1979) and I was sitting in the surgical waiting room with my father and Christmas music was playing. I love Christmas music, but I kept thinking that if something went wrong, or if this didn't go well then I would always associate it with Christmas music. Luckily things went well and my mother and I still enjoy listening to Christmas music together. So yesterday when I went to my second chemo and heard the Christmas music playing I felt some strength from those in my family and others I've known who have gone through this before me. It was very comforting. I am also comforted by the season of gratitude marked by Thanksgiving and the anticipation of Advent and the love and joy and promise of Christmas. And instead of the bleakness of "post holiday winter" I am looking forward to a time of hibernation and healing. I will have the opportunity (unencumbered by the obligations of work, etc.) to spend cozy time indoors - maybe with a fire, maybe watching old movies or something that will make me laugh, reading when I can, napping, staying in touch through facebook, e-mail, the blog, and occasionally phone calls or a visit here and there. And in the spring when the chemo is over (God willing) and we begin to move on to radiation, and the trees are budding and the earth is in renewal with the promise of rebirth and resurrection...my hair will slowly but steadily return...
Friday, November 7, 2008
Miss Me?
Hello....just thought I'd give you a little update before my next chemo....right now I'm feeling pretty well - just a little tired and one or two GI annoyances. I'm gearing up for round two which will take place on Thursday, November 13th at 8am assuming my numbers are good. I have debated how much I will write on this blog because I want people to keep reading, but it is also for me to process this experience and to have those of you who wish to, walk with me on this journey. So I've decided that I will share what I can but hopefully I won't be too graphic. I am also doing other writing and I will entitle the upcoming book ...What I Didn't Say in My Blog...
All that being said, the first chemo wasn't too bad. The support meds did a great job for the first few days following the treatment. The Neulasta shot has its own set of side effects but they sort of blended in for the moment. Monday (the fourth day) I hit a brick wall. My thinking was foggy and I had to lay down in the middle of the day (!) Tuesday was a bit scary and I felt pretty weak. I went to see Dr. Kennedy for my follow-up on Wednesday and she told me that my white count was 700. No visitors or crowds for me...just the thought of me working in the ER brought images of the girl in the plastic bubble to mind. Dr. Kennedy said that younger, healthy patients seem to drop their white counts lower and faster than the older patients. I think she was lying...like "it's good luck when it rains on your wedding day"...Anyway, she said that it would continue to drop until Saturday or Sunday and that that was the crucial time for infection. She said that after that the white count would start going up again. I had to keep taking my temperature. I wasn't quite as annoying as newly diagnosed diabetics who check their blood sugars every half hour but I was probably close. My temp started out in the 97.5 range and the highest it got was 99.2 one morning at 4am. I took two tylenol and that was that. If it went to 100 - 100.5, I would have had to call the Dr. I have a whole list of delightful possibilities that would prompt a call no matter what time of day or night that they occured. I only had to call once on Saturday night. (I did have to call again on Wednesday but I'm not counting that because it was for the same issue....) My worst time of the day has been between 11am or so and 3pm.
Sunday and Monday (Nov. 2nd and 3rd) I started to feel better. Susan got me a shower chair which has been a Godsend and I am noticing that my hair is beginning to come out - not dramatically - but enough. I have a lot of hair to begin with but I suspect this next round will encourage it to "let go and be free!" The chemo attacks all the fast growing cells in the body and it is interesting to see and feel this happening. It reminds me that these drugs are doing their job... sort of like the pumpkins in the picture...before and after chemotherapy and radiation....
I was able to get out and vote - I hope you all made it to the polls. I was listening to the story of a 92 year old woman who had had a stroke and all sorts of medical problems who felt that she absolutely had to vote in this election, so she got an ambulance to bring her by stretcher to her polling place and she was able to vote. While I am in awe and applaud her determination, I wish someone had told her about proxy ballots....
Thank you to everyone on the Women's Retreat who prayed for me and signed my card. And thank you to those of you who told me that you missed the blog...I'm never gone for too long...
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