Well, I was given the two Fleet enemas for the sphygmoidoscopy this afternoon. I was hoping for hemorrhoids - imagine that! Unfortunately it isn't. It is a flare-up of the colitis. I am terribly disappointed. We faxed the results of the procedure to Dr. Behbakht and have a call into the oncology nurse, Syd. I so want this NOT to bump me out of the trial. My gastroenterologist could tell me NOTHING about how this flared up. Everyone who has colitis has a 40% chance of getting a flare-up every single year. It could have been the accumulative effect of the Avastin - but he couldn't say. Because I cannot be given Remicaid or any other Colitis medication, there is only one option - oral and suppository medication that costs over $2000 a month! Geez, what a choice! Dave has gone down to the valley to get the suppositories/enemas. They didn't even have them here in Estes! I have the Asacol pills - he's gone down to Loveland to get the rest.
I am very disappointed and depressed this afternoon. I am also short of sleep and want to take a nap, if my brain will slow down enough to let me.
I'll post more later.
Thursday, December 8, 2011
Wednesday, December 7, 2011
7 December 2011
Thought I'd bring you up to date on my chemo.
The internal exam was more complete yesterday, of course, and my Dr. is very pleased. There is absolutely no sign of any active cancer. He assured me that, in his opinion, my GI bleeding is nothing more than hemorrhoids and I just need a few days to heal them.
I agree with his assessment and am only a little disappointed. This is but a small wrinkle in my chemo road. I have not had any real serious side effects or problems during my whole trip with this and not concerned about the delay. For me to close this book, I merely want to be done with it during the calendar year 2011. I want 2012 to be a fresh, new year!
Thank you all for your support through this. I am confident that all will continue to go well.
One of the things that I WAS going to discuss with my Dr yesterday was that I was experiencing some anxiety about ending the medicine that has saved my life. When you are put on medicine that is that serious, it is a little difficult to think of not getting it, even though I, of course, don't want to stay on chemo! Someone I was talking to said I might try thinking of it like anyone does about, for example, antibiotics. When you take that last pill over whatever length of time, it is because it has done its job and you don't need it any longer. So, I am trying to think of this as a chapter in my life where I have received the medicine I needed and am now well. My Dr. and I never got around to this discussion!
My Dr. said he was absolutely delighted with my progress throughout this chemo and was actually surprised that my blood counts were right where they should be, even with this GI bleeding. He was incredulous about that! There was no indication with any of my blood work that I was experiencing any difficulty. He is not at all concerned about this GI bleeding - just wants to give me time to heal. And he is not concerned in the least about the delay in the 6th and final infusion.
Friday, December 2, 2011
1 December 2011
I have had 5 infusions. This last one gave me some problems - constipation like I've never had before! Finally talked with the pharmacist who gave me wonderful advice - Mira Lax. It turns out that was exactly what I needed and if anyone else has constipation for whatever reason, I can't recommend this highly enough. It is very gentle on my system and all you do is mix it in a glass of water. I starts out cloudy and that disappears - drink the water without any taste or after-taste.
I didn't feel at all well the week following the infusion and I had trouble during the infusion. I was given Ativan immediately followed by Benadryl. The Ativan didn't have a chance to take affect before I got the Benadryl, so I ended up drowsy and restless. They finally gave me another dose of Ativan (1/2 mg) but, frankly, all that did was make me drowsy and restless - not a great combination. I didn't like my reaction to all that. It effects my memory. Bill called and I didn't remember talking with him at all!
After the week of not feeling well, I ended up in ER with a kidney stone, which I passed while I was there! That means I didn't drink enough water all that week. I admit it and will make a serious effort to drink something more following the 6th and final infusion.
Then last Wednesday, I had rectal bleeding which scared me to pieces. I called Anschutz Cancer Center and was able to talk with a GI nurse, who told me to call my gastroenterologist, which I did - immediately. He, of course, was off for the day, but his nurse was wonderful and calmed my fears. He called the next morning and feels that it is (1) not cancer (phew!), (2) not a flareup of the colitis and (3) nothing to worry about because I now have hemorrhoids. Never having had them before in my life, I didn't even consider that was the reason for the bleeding. He advised just watching it for a couple of days. When it hadn't diminished by today, I called him back. He prescribed a suppository (oh, joy!) and will do a sygmoidoscopy next Thursday. That is far less invasive than a colonoscopy and will not interfere with my final infusion. I won't even need anesthesia.
My lab work was absolutely fine - all the blood counts had gone back to normal after dropping that first week. My blood pressure was up a little 130/80 but my oncology RN was very pleased and not concerned about the rise in BP. Actually, it isn't up all that much from 126/74 the previous week. Considering all I went through from week 1 to week 2, I'm not concerned. She obviously wasn't either.
My sinus congestion continues to be a bother - but I am finding that the sinus saline neti pot works very well in conjunction with a decongestant. [I was just watching the weather station who delivered a scathing report on CT's CL&P, which was woefully unprepared for recovery following that horrible snow storm the week of Halloween. They apparently are living up to our name for them: CT Loot & Plunder! I remember when we first lived in CT. If a rain cloud passed over our house, we lost power! We finally found out that we weren't on the Newtown line at all - but, in fact, the last house on the Brookfield line. Needless to say, that house which is at the END of the line does NOT get first service].
My infusion had been scheduled for today, but was moved because my Dr. had something else he was doing today. So my final infusion is next Tuesday, December 6.
I now am entering a new phase of my recovery...my last infusion. I am actually anxious about not having the chemo. I know that doesn't make sense to some, but while I was fighting for my life, I put myself in my Dr.'s hands and got the medicine I needed to make me well. After Tuesday, that will no longer be available to me. That causes me some concern. Even though I rationally can say it has done the job it was supposed to do, all of a sudden I am losing something real that I was holding on to - my life line. I have talked with two friends who have been through chemo and they both tell me this is perfectly normal. It took one of them two years to trust that 'it' wasn't coming back.
My hair continues to grow and everyone really likes the new 'do'! It is thick and curly and I love the feel of it. One friend says he thinks it is more silvery. I don't know about that, but I'm thrilled I didn't lose it. That helped me not feel depressed. Losing one's hair is so demoralizing. All femininity is gone, despite everyone saying I have a great shaped head.
I will try to write more often following the last infusion. Thank you all for your moral support. That has gotten us through this.
My Siamese Scarlett just came and gave me a headbutt so I think she needs some lap time.
I didn't feel at all well the week following the infusion and I had trouble during the infusion. I was given Ativan immediately followed by Benadryl. The Ativan didn't have a chance to take affect before I got the Benadryl, so I ended up drowsy and restless. They finally gave me another dose of Ativan (1/2 mg) but, frankly, all that did was make me drowsy and restless - not a great combination. I didn't like my reaction to all that. It effects my memory. Bill called and I didn't remember talking with him at all!
After the week of not feeling well, I ended up in ER with a kidney stone, which I passed while I was there! That means I didn't drink enough water all that week. I admit it and will make a serious effort to drink something more following the 6th and final infusion.
Then last Wednesday, I had rectal bleeding which scared me to pieces. I called Anschutz Cancer Center and was able to talk with a GI nurse, who told me to call my gastroenterologist, which I did - immediately. He, of course, was off for the day, but his nurse was wonderful and calmed my fears. He called the next morning and feels that it is (1) not cancer (phew!), (2) not a flareup of the colitis and (3) nothing to worry about because I now have hemorrhoids. Never having had them before in my life, I didn't even consider that was the reason for the bleeding. He advised just watching it for a couple of days. When it hadn't diminished by today, I called him back. He prescribed a suppository (oh, joy!) and will do a sygmoidoscopy next Thursday. That is far less invasive than a colonoscopy and will not interfere with my final infusion. I won't even need anesthesia.
My lab work was absolutely fine - all the blood counts had gone back to normal after dropping that first week. My blood pressure was up a little 130/80 but my oncology RN was very pleased and not concerned about the rise in BP. Actually, it isn't up all that much from 126/74 the previous week. Considering all I went through from week 1 to week 2, I'm not concerned. She obviously wasn't either.
My sinus congestion continues to be a bother - but I am finding that the sinus saline neti pot works very well in conjunction with a decongestant. [I was just watching the weather station who delivered a scathing report on CT's CL&P, which was woefully unprepared for recovery following that horrible snow storm the week of Halloween. They apparently are living up to our name for them: CT Loot & Plunder! I remember when we first lived in CT. If a rain cloud passed over our house, we lost power! We finally found out that we weren't on the Newtown line at all - but, in fact, the last house on the Brookfield line. Needless to say, that house which is at the END of the line does NOT get first service].
My infusion had been scheduled for today, but was moved because my Dr. had something else he was doing today. So my final infusion is next Tuesday, December 6.
I now am entering a new phase of my recovery...my last infusion. I am actually anxious about not having the chemo. I know that doesn't make sense to some, but while I was fighting for my life, I put myself in my Dr.'s hands and got the medicine I needed to make me well. After Tuesday, that will no longer be available to me. That causes me some concern. Even though I rationally can say it has done the job it was supposed to do, all of a sudden I am losing something real that I was holding on to - my life line. I have talked with two friends who have been through chemo and they both tell me this is perfectly normal. It took one of them two years to trust that 'it' wasn't coming back.
My hair continues to grow and everyone really likes the new 'do'! It is thick and curly and I love the feel of it. One friend says he thinks it is more silvery. I don't know about that, but I'm thrilled I didn't lose it. That helped me not feel depressed. Losing one's hair is so demoralizing. All femininity is gone, despite everyone saying I have a great shaped head.
I will try to write more often following the last infusion. Thank you all for your moral support. That has gotten us through this.
My Siamese Scarlett just came and gave me a headbutt so I think she needs some lap time.
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