Spent my birthday flying to Bethesda. Blood counts high enough to start my treatment. My AZD (PARP inhibitor) is an interesting drug. 8 huge pills every 12 hours, no food or drink (other than water) 2 hours before and 2 hours after. I am finding that the drug makes me sick, even with the anti-nausea meds. Today I am due for my carbo infusion. Home tomorrow I hope. Short post, am due in the infusion room a few minutes ago!
Nancy
Tuesday, October 27, 2009
Wednesday, October 21, 2009
different trip
I got into Bethesda late on Sunday night, the 18th. Shortly after checking into my hotel I received a call from Chris letting me know he was coming to visit me from NYC. The girls had called him, let him know that someone "needs to be with Mom", and he hopped on the bus. He went to the doctor with me on Monday, we had a wonderful lunch, then he headed back home.
Ah, the doctor appointment. My platelts were 9.8 and I needed to be 10 in order to have chemo. 14 is normal. (Sometimes an extra zero is added to the end 98, 100 normal is 140, but other times I think the doctors just shorten it.) They sent Chris and I down to have my liver MRI done with the instructions to come back and they would "do over" on my blood test. When we got down to the MRI department we discovered they had canceled my MRI (too much protien in my urine), so back up we went. This time my platelets had dropped even further to 8.5. No chemo.
By now it was almost noon. Chris and I spent the rest of the day together before he had to head for home.
On Tuesday I went in prepared for chemo, platelets down to 8.1. No chemo. Very upset about it. They did share with me that all the other women on the trial were having the same problem and no one was able to continue there treatment. My CA125 (blood marker) has been going up 400 points per 3 weeks. This time it only went up 200 points. Guess I will take what I can get, and assume this is good news. I was able to catch a flight home, arriving one day earlier than planned. I will have my blood tested here in Bremerton on Friday, with the possiblity of flying back on Sunday (my birthday!)
It is good to be home. A rainy day here, but I'm home with my family instead of watching the rain in Washington D.C.
I am still very unhappy with this blog site. I am having lots of people tell me they can't leave a comment. I need the comments. I need the well wishes, I need friends out there who care. I will be changing the site, but not sure when. Hopefully before my next trip.
All for now.
Nancy
Ah, the doctor appointment. My platelts were 9.8 and I needed to be 10 in order to have chemo. 14 is normal. (Sometimes an extra zero is added to the end 98, 100 normal is 140, but other times I think the doctors just shorten it.) They sent Chris and I down to have my liver MRI done with the instructions to come back and they would "do over" on my blood test. When we got down to the MRI department we discovered they had canceled my MRI (too much protien in my urine), so back up we went. This time my platelets had dropped even further to 8.5. No chemo.
By now it was almost noon. Chris and I spent the rest of the day together before he had to head for home.
On Tuesday I went in prepared for chemo, platelets down to 8.1. No chemo. Very upset about it. They did share with me that all the other women on the trial were having the same problem and no one was able to continue there treatment. My CA125 (blood marker) has been going up 400 points per 3 weeks. This time it only went up 200 points. Guess I will take what I can get, and assume this is good news. I was able to catch a flight home, arriving one day earlier than planned. I will have my blood tested here in Bremerton on Friday, with the possiblity of flying back on Sunday (my birthday!)
It is good to be home. A rainy day here, but I'm home with my family instead of watching the rain in Washington D.C.
I am still very unhappy with this blog site. I am having lots of people tell me they can't leave a comment. I need the comments. I need the well wishes, I need friends out there who care. I will be changing the site, but not sure when. Hopefully before my next trip.
All for now.
Nancy
Saturday, October 17, 2009
away we go...again
Leaving tomorrow. Trying to get my head around "I GET to go to Bethesda for treatment", instead of "I HAVE TO go to Bethesda for treatment.
Nancy
Nancy
Thursday, October 8, 2009
Home again, home again
Now back in Washington State. Feeling much better. Leave for Bethesda on the 18th. Until then, I am planning on enjoying my family and friends.
I am also quite displeased with this blog spot, have another one in mind, will advise you all of the change (if I ever get around to changing)
Nancy
I am also quite displeased with this blog spot, have another one in mind, will advise you all of the change (if I ever get around to changing)
Nancy
Wednesday, October 7, 2009
Back in the hospital again
October 4, 2009
Sunday
I am still in the hospital in Bethesda Maryland. I have been here since trying to leave home on the 1st. Seems the anti-nausea meds they gave me weren’t quite strong enough. I ended up in the Regean Airport violently nauseated. They sent a taxi for me and admitted me to the hospital here in Bethesda. After 4 long days, I think I am getting out of here tomorrow.
I told Dennis I didn’t know when in my life I had ever been that sick. He let me know he has heard me say that before! At any rate, it hasn’t been the most fun I have ever had. It is getting better, however. I am in a private room because I have a fever and they thought I might have a respiratory infection. I’m in isolation. I’m sure my nurses are really cute ladies, most of them have been young, but I haven’t seen their faces. I can attest to the fact that they are all really, really kind and nice. I have been trying to “walk the atrium” every few hours. I put on my hospital robe (with the matching hospital jammies, if you can imaging) Grab my I-pod and head for “the track”. A full 10 laps takes about 25-30 minutes. The building has 2 13 story towers, joined in the middle by a 7 story atrium. The first few laps it really was prettier than it is now. The 7th floor holds among other things a chapel and a library. The library is closed of course, but there is a great section of “honesty” books out front. ( you know, leave one, take one) I have been using it quite a bit.
Dropped by the chapel. Wondered if it was anymore spiritual than any other place for me. Perhaps not more spiritual, but certainly a place for some quiet meditation. Gave thanks for all that I have, for my beautiful life, my magnificent children, my incredible friends. Have thought much about Wendy these past days. Things I would do so differently now, some lapses in good judgement when I had no idea what it was like for her. My mother died when I was 5. I have always believed someday, somehow I would meet up with her. I wondered in the chapel if she would be there to meet me, then I thought most likely Wendy would be, and I hoped she still wasn’t mad!!
I will be glad to be home. Babbling again, and won’t be able to post this until I have had time to think. I’ll try to keep it true to my thoughts and not edit too much.
Nancy
Sunday
I am still in the hospital in Bethesda Maryland. I have been here since trying to leave home on the 1st. Seems the anti-nausea meds they gave me weren’t quite strong enough. I ended up in the Regean Airport violently nauseated. They sent a taxi for me and admitted me to the hospital here in Bethesda. After 4 long days, I think I am getting out of here tomorrow.
I told Dennis I didn’t know when in my life I had ever been that sick. He let me know he has heard me say that before! At any rate, it hasn’t been the most fun I have ever had. It is getting better, however. I am in a private room because I have a fever and they thought I might have a respiratory infection. I’m in isolation. I’m sure my nurses are really cute ladies, most of them have been young, but I haven’t seen their faces. I can attest to the fact that they are all really, really kind and nice. I have been trying to “walk the atrium” every few hours. I put on my hospital robe (with the matching hospital jammies, if you can imaging) Grab my I-pod and head for “the track”. A full 10 laps takes about 25-30 minutes. The building has 2 13 story towers, joined in the middle by a 7 story atrium. The first few laps it really was prettier than it is now. The 7th floor holds among other things a chapel and a library. The library is closed of course, but there is a great section of “honesty” books out front. ( you know, leave one, take one) I have been using it quite a bit.
Dropped by the chapel. Wondered if it was anymore spiritual than any other place for me. Perhaps not more spiritual, but certainly a place for some quiet meditation. Gave thanks for all that I have, for my beautiful life, my magnificent children, my incredible friends. Have thought much about Wendy these past days. Things I would do so differently now, some lapses in good judgement when I had no idea what it was like for her. My mother died when I was 5. I have always believed someday, somehow I would meet up with her. I wondered in the chapel if she would be there to meet me, then I thought most likely Wendy would be, and I hoped she still wasn’t mad!!
I will be glad to be home. Babbling again, and won’t be able to post this until I have had time to think. I’ll try to keep it true to my thoughts and not edit too much.
Nancy
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