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.
Saturday, November 12, 2011
12 November 2011
Yesterday was kind of a mixed bag. When I got there I had to go to the main desk and register that I had arrived. Because of my problems with the RN last time for the lab work, I told the woman at the desk that I did not want the same RN I had last infusion. She asked me who it was and why. I didn't remember her name but described her and she knew who it was. I told her that the main problem arose because she would not listen to me. I know ME better than anyone else and when I say I have to be inclined for access to the port, it just makes everything go smoothly. Instead, she 'knew' better than I and, therefore, the procedure took 1 1/4 HOURS!!!!! The registrar said Joanna wasn't there today (they rotate) but she would note it on my chart. I then went out in the hall to sit and wait. Within just a few minutes, Maureen called my name. From the time I got up, walked into the cubicle, explained the procedure for being inclined, she said, "Yes, I have accessed you before." She inclined me - got the access, drew the blood she needed, capped the tube for infusion. I was back sitting in the hall no more than 5 minutes later!!! Hurrah. I told her she had lowered my BP by 10 points! I also asked her how long she had been an RN (5+ years) and where she had trained. She said CT! I asked where and she said Fairfield. I told her I had lived in Newtown for 20 years and that my best friend was living in Fairfield. We had a good laugh.
Everything is good from the blood work and physical exam. However I had some difficulties with the infusion. I had told the Dr. that I had again had the restless leg syndrome with the previous infusion so he ordered Ativan. It was given through the port, immediately followed by the Benedryl. Unfortunately, I was both groggy and had RLS and just couldn't relax. I would start to drift off but then would be restless and just couldn't relax. I finally got another 1/2 mg of Ativan but that just didn't take care of it. I finally asked if I could go lie down on a bed, instead of reclining in a chair. That helped a little and I did doze but couldn't quiet the RLS. That, unfortunately lasted about 2/3 of the infusion. I finally was able to have the lights on and could sit up without discomfort. Dave said I was a lot more fun!!! I walked like a drunken sailor!
I will gladly suffer those side effects if that's the worst I have during the infusion, but I do think I need the 1 mg of Ativan before the benedryl and time in between those two drugs. Because they feed all the infusion chemo through saline, I spent last night peeing every 1 1/2 - 2 hours all night! So I didn't get a particularly good night's sleep when I was really exhausted. Tonight will be better, I am sure.
The fact that I have only ONE MORE TO GO encourages me to finish it out. I had already decided that unless cancer showed up in one of the test or exams, I would finish the chemo regime regardless, this was an easy decision to make. In fact, if cancer showed up while I am on this trial, I will be booted out of it. Obviously, it would not have been working.
I sort of expect the same fatigue and lethargy to become the routine this next week. I will just rest and sleep when I need to. Not a problem.
I also screwed up the courage to ask the Dr. of the four from this area, how many have been able to continue the trial. He said I was the only one. The other three came into the trial with cancer present and it progressed, which means the chemo was not working. With that, they are automatically out of the trial, unfortunately. When he comes in to have the consultation and do the physical exam, he is much more personable with me. Now I know why. I guess I am his start patient. I am sorry the other three have had to withdraw and I wish them well, although I don't expect they are having an easy time of it.
I feel fine today. Last time it was Sunday before I felt the side effects. Regarding the RA, something is working very well. With the 1st infusion, I was free of RA symptoms for about 5 days; 2nd fusion, about 10 days; 3rd infusion, 2 full weeks; 4th infusion the full three weeks. I have no symptoms today so that is continuing. I asked them if they knew which drug it was that was doing the magic. They don't know but are anxious to follow me. We're all hoping it is the Avastin, which is the biologic I will continue after the 6th infusion. I am the only one who will initially know if that is the one working. Keep your fingers crossed.
That's it for today. Thanks for your terrifically good thoughts.
Everything is good from the blood work and physical exam. However I had some difficulties with the infusion. I had told the Dr. that I had again had the restless leg syndrome with the previous infusion so he ordered Ativan. It was given through the port, immediately followed by the Benedryl. Unfortunately, I was both groggy and had RLS and just couldn't relax. I would start to drift off but then would be restless and just couldn't relax. I finally got another 1/2 mg of Ativan but that just didn't take care of it. I finally asked if I could go lie down on a bed, instead of reclining in a chair. That helped a little and I did doze but couldn't quiet the RLS. That, unfortunately lasted about 2/3 of the infusion. I finally was able to have the lights on and could sit up without discomfort. Dave said I was a lot more fun!!! I walked like a drunken sailor!
I will gladly suffer those side effects if that's the worst I have during the infusion, but I do think I need the 1 mg of Ativan before the benedryl and time in between those two drugs. Because they feed all the infusion chemo through saline, I spent last night peeing every 1 1/2 - 2 hours all night! So I didn't get a particularly good night's sleep when I was really exhausted. Tonight will be better, I am sure.
The fact that I have only ONE MORE TO GO encourages me to finish it out. I had already decided that unless cancer showed up in one of the test or exams, I would finish the chemo regime regardless, this was an easy decision to make. In fact, if cancer showed up while I am on this trial, I will be booted out of it. Obviously, it would not have been working.
I sort of expect the same fatigue and lethargy to become the routine this next week. I will just rest and sleep when I need to. Not a problem.
I also screwed up the courage to ask the Dr. of the four from this area, how many have been able to continue the trial. He said I was the only one. The other three came into the trial with cancer present and it progressed, which means the chemo was not working. With that, they are automatically out of the trial, unfortunately. When he comes in to have the consultation and do the physical exam, he is much more personable with me. Now I know why. I guess I am his start patient. I am sorry the other three have had to withdraw and I wish them well, although I don't expect they are having an easy time of it.
I feel fine today. Last time it was Sunday before I felt the side effects. Regarding the RA, something is working very well. With the 1st infusion, I was free of RA symptoms for about 5 days; 2nd fusion, about 10 days; 3rd infusion, 2 full weeks; 4th infusion the full three weeks. I have no symptoms today so that is continuing. I asked them if they knew which drug it was that was doing the magic. They don't know but are anxious to follow me. We're all hoping it is the Avastin, which is the biologic I will continue after the 6th infusion. I am the only one who will initially know if that is the one working. Keep your fingers crossed.
That's it for today. Thanks for your terrifically good thoughts.
Sunday, November 6, 2011
6 November 2011
The last infusion (#4) was interesting - by the time we left the hospital, my RA symptoms had totally disappeared. I don't know which of the drugs is doing the magic. I hope it is the Avastin (Bevacizamab) because that will be the maintenance drug after the 6th infusion, which should be December 2. Today is day #16 and so far the RA is not as bad as it was this day with cycle #3. I suppose that is part of the cumulative factor.
I did experience one more side effect with this last infusion. Beginning Monday after the infusion, I was very fatigued and had absolutely no energy. That existed all week, through Sunday. When I woke up Monday morning, both symptoms were completely gone and I have not been unduly tired and have had plenty of energy. I suppose, as this is cumulative, this will be the pattern for the next two infusions. I don't fight it - simply go with it - take naps and don't try to do too much that week.
The other side effect that bothers me is the sinus congestion. There are times when I have to choose between chewing or breathing. It isn't fun. At the last Dr.'s visit (the day of infusion) I mentioned this to the Dr. and was told I could take Sudafed PE, Sudafed or Allegra. When I talked with my oncology nurse on Friday, she said I should NOT be taking any of those because they raise my blood pressure and the Avastin raises it. If I am over the line, they can't give me the chemo, so I am following her advise and taking Advil Congestion Relief. That does seem to be working and I can take it every four hours, if necessary. The important factor is that is doesn't raise my BP. So, I take one before going to bed and have one available if I wake up congested in the middle of the night. It is a little frustrating that the Dr. tells me one thing, the oncology nurse another. I do wish they would communicate together and present a united front.
When I had my labs done last Thursday, I was still on Sudafed (Sudafed PE didn't work very well), so I think that accounts for my BP being a little high this week - more like 146/84. I will find out this next week.
The side effect I noticed last cycle - blurred vision - is still with me. If I am on the computer for too long, or work y needlework too intensely, or even read, my eyes get so tired and sometimes that gives me a headache behind my eyes. When I notice that happening, I stop whatever I am doing and look out the window as far into the distance as I can to relax my eyes.
We are in a winter storm pattern - two a week. However, it does look like this next one will miss us, going south of us. If there is forecast of snow for the day we go to Aurora for the infusion, we will opt to go down the day before and stay at the hotel across the street. That way, my infusion will not be delayed. I am so looking forward to #6 being done, although I have tolerated the chemo much better than I had any reason to expect.
My hair, by the way, is coming in thick and curly. It is easy to style and I really think I will keep it shorter than I did before surgery. It is just so easy to take care of and all my friends say they really like it short.
I did experience one more side effect with this last infusion. Beginning Monday after the infusion, I was very fatigued and had absolutely no energy. That existed all week, through Sunday. When I woke up Monday morning, both symptoms were completely gone and I have not been unduly tired and have had plenty of energy. I suppose, as this is cumulative, this will be the pattern for the next two infusions. I don't fight it - simply go with it - take naps and don't try to do too much that week.
The other side effect that bothers me is the sinus congestion. There are times when I have to choose between chewing or breathing. It isn't fun. At the last Dr.'s visit (the day of infusion) I mentioned this to the Dr. and was told I could take Sudafed PE, Sudafed or Allegra. When I talked with my oncology nurse on Friday, she said I should NOT be taking any of those because they raise my blood pressure and the Avastin raises it. If I am over the line, they can't give me the chemo, so I am following her advise and taking Advil Congestion Relief. That does seem to be working and I can take it every four hours, if necessary. The important factor is that is doesn't raise my BP. So, I take one before going to bed and have one available if I wake up congested in the middle of the night. It is a little frustrating that the Dr. tells me one thing, the oncology nurse another. I do wish they would communicate together and present a united front.
When I had my labs done last Thursday, I was still on Sudafed (Sudafed PE didn't work very well), so I think that accounts for my BP being a little high this week - more like 146/84. I will find out this next week.
The side effect I noticed last cycle - blurred vision - is still with me. If I am on the computer for too long, or work y needlework too intensely, or even read, my eyes get so tired and sometimes that gives me a headache behind my eyes. When I notice that happening, I stop whatever I am doing and look out the window as far into the distance as I can to relax my eyes.
We are in a winter storm pattern - two a week. However, it does look like this next one will miss us, going south of us. If there is forecast of snow for the day we go to Aurora for the infusion, we will opt to go down the day before and stay at the hotel across the street. That way, my infusion will not be delayed. I am so looking forward to #6 being done, although I have tolerated the chemo much better than I had any reason to expect.
My hair, by the way, is coming in thick and curly. It is easy to style and I really think I will keep it shorter than I did before surgery. It is just so easy to take care of and all my friends say they really like it short.
Friday, October 28, 2011
October 28, 2011
I had my fourth infusion last Friday. The infusion itself went very well, although there was about a half hour of restless leg syndrome. Luckily it did not last long. This was with the Benadryl cut in half. Darn!
The frustrating part of the day began when we arrived. Lab work usually takes about 15-20 minutes. This involves accessing the port, and drawing blood for the usual CBC. The nurse would not listen to me. I know how the port in MY body needs to be accessed. I have to be tilted back a little. She said she knew how to access and would do it her way. Well - guess what didn't work! She tried several times - finally decided to add TPA because there had to be a small clot at the end of the catheter. TPA is Tissue plasminogen activator (abbreviated TPA or PLAT) is a protein involved in the breakdown of blood clots. For that addition, I had to sit a half hour before she could draw that out. So, she decided to draw blood the old-fashioned way. She couldn't get it. After trying twice, she went and got someone else. That didn't work either, so she got a 32-year veteran ER nurse to come and try. She got it - lickity-split - first try. After sitting for that half hour, the first nurse was able to access the port while I slid down in my chair to get into a tilted position. It worked. I had been in there 1 1/4 hours! Grrrr. I will ask for a different nurse November 11.
Then I was taken back for weighing in, height and BP. Guess what? My BP was high! While I tried to meditate (not very successfully) to get my BP down, she took it again and it was within acceptable range which meant I could receive the infusion.
I was taken to the office for the Dr.'s appointment. When I was ready for his examination, I waited and waited and waited - for a full hour! Finally, Melody (the weigh-in nurse) came by and saw that the nurse had not flipped the flag that says I am ready. She went off, corralled Dr. Behbahkt and brought him back to the room. This was a total hurry-up-and-wait day. However, the doctor reassured me that the CT scan is perfectly fine - absolutely nothing to worry about. That small hollow cyst is on my abdomen (not near the bowel) about where my belly button is and is of no concern. He did a thorough internal and I am fine! He and I discussed the frustration of getting incomplete information. From now on, he will call me personally after a CT scan when he has had a chance to read it. I can also ask for a disc of the scan to send to Dave's cousin, Dr. Fallah, who has volunteered to read them and tell me what she sees. That was actually pretty cute on Friday. I had thanked Dr. Behbakht for sending the scan to Dr. Fallah (Juliet). He said he was absolutely fine with a second opinion. Then he looked kind of sheepish and said, "I hope she agreed with me." I laughed and said she had.
Then I went into infusion. The good news is that at Judy's suggestion, I decided to monitor when the RA symptoms go away. This infusion, by the time we left at 5:30 my knees were fine - pretty quick, eh? Now, a week later, they are still fine.
While I was in with the Dr., I told him I had had to have a haircut. I went Wednesday just to have it trimmed around the ears and at the nape of the neck. Now everything looks purposeful. Dr. Behbakht said he had had a haircut, too, but mine looked cute! I have now ventured out with friends without any scarf or wig. Everyone likes my hair and it is really growing in - curly!
I do have some side effects due to the accumulative effect of the chemo. I still have sinus congestion but can take Sudafed PE, Sudafed or Allegra for it. With the Neti, it is tolerable - something I can live with. I am also showing fatigue and general lack of energy. I still get up and dressed but can fall asleep pretty easily. When I blow my nose I often get blood. This, too, is the chemo. And my voice is a little hoarse at times. So far no neuropathy in either toes or fingers. That is a relief. I also still have the blurry vision. My eyes get very tired easily even when reading.
My lab work from yesterday was as expected - all numbers looked good except the platelets which are generally down a little during this first week. It is expected and will probably show more satisfactory numbers next week. My BP yesterday was 134/84 with a heart rate of 64.
I also have no taste buds to speak of. When I can smell food, it smells just fine, but when I taste it, it kind of all tastes the same. This is not very appetizing. So I eat because I know I have to.
We had a real winter storm this week. It began snowing Tuesday evening and ended mid afternoon Wednesday. We got somewhere between 9 and 14" in Estes Park. It is heavy and wet. Judy got as much in Fort Collins but also lost power. Adam drained the water pipes and power was out until 6:45 pm last night. They were able to stay with Adam's parents, Fern and Alan, also in Fort Collins, but with power. Today Judy is catching up on laundry and putting a load or two through the dishwasher. She agrees that it is amazing how we take certain things for granted - like electricity!
Next infusion: November 11
The frustrating part of the day began when we arrived. Lab work usually takes about 15-20 minutes. This involves accessing the port, and drawing blood for the usual CBC. The nurse would not listen to me. I know how the port in MY body needs to be accessed. I have to be tilted back a little. She said she knew how to access and would do it her way. Well - guess what didn't work! She tried several times - finally decided to add TPA because there had to be a small clot at the end of the catheter. TPA is Tissue plasminogen activator (abbreviated TPA or PLAT) is a protein involved in the breakdown of blood clots. For that addition, I had to sit a half hour before she could draw that out. So, she decided to draw blood the old-fashioned way. She couldn't get it. After trying twice, she went and got someone else. That didn't work either, so she got a 32-year veteran ER nurse to come and try. She got it - lickity-split - first try. After sitting for that half hour, the first nurse was able to access the port while I slid down in my chair to get into a tilted position. It worked. I had been in there 1 1/4 hours! Grrrr. I will ask for a different nurse November 11.
Then I was taken back for weighing in, height and BP. Guess what? My BP was high! While I tried to meditate (not very successfully) to get my BP down, she took it again and it was within acceptable range which meant I could receive the infusion.
I was taken to the office for the Dr.'s appointment. When I was ready for his examination, I waited and waited and waited - for a full hour! Finally, Melody (the weigh-in nurse) came by and saw that the nurse had not flipped the flag that says I am ready. She went off, corralled Dr. Behbahkt and brought him back to the room. This was a total hurry-up-and-wait day. However, the doctor reassured me that the CT scan is perfectly fine - absolutely nothing to worry about. That small hollow cyst is on my abdomen (not near the bowel) about where my belly button is and is of no concern. He did a thorough internal and I am fine! He and I discussed the frustration of getting incomplete information. From now on, he will call me personally after a CT scan when he has had a chance to read it. I can also ask for a disc of the scan to send to Dave's cousin, Dr. Fallah, who has volunteered to read them and tell me what she sees. That was actually pretty cute on Friday. I had thanked Dr. Behbakht for sending the scan to Dr. Fallah (Juliet). He said he was absolutely fine with a second opinion. Then he looked kind of sheepish and said, "I hope she agreed with me." I laughed and said she had.
Then I went into infusion. The good news is that at Judy's suggestion, I decided to monitor when the RA symptoms go away. This infusion, by the time we left at 5:30 my knees were fine - pretty quick, eh? Now, a week later, they are still fine.
While I was in with the Dr., I told him I had had to have a haircut. I went Wednesday just to have it trimmed around the ears and at the nape of the neck. Now everything looks purposeful. Dr. Behbakht said he had had a haircut, too, but mine looked cute! I have now ventured out with friends without any scarf or wig. Everyone likes my hair and it is really growing in - curly!
I do have some side effects due to the accumulative effect of the chemo. I still have sinus congestion but can take Sudafed PE, Sudafed or Allegra for it. With the Neti, it is tolerable - something I can live with. I am also showing fatigue and general lack of energy. I still get up and dressed but can fall asleep pretty easily. When I blow my nose I often get blood. This, too, is the chemo. And my voice is a little hoarse at times. So far no neuropathy in either toes or fingers. That is a relief. I also still have the blurry vision. My eyes get very tired easily even when reading.
My lab work from yesterday was as expected - all numbers looked good except the platelets which are generally down a little during this first week. It is expected and will probably show more satisfactory numbers next week. My BP yesterday was 134/84 with a heart rate of 64.
I also have no taste buds to speak of. When I can smell food, it smells just fine, but when I taste it, it kind of all tastes the same. This is not very appetizing. So I eat because I know I have to.
We had a real winter storm this week. It began snowing Tuesday evening and ended mid afternoon Wednesday. We got somewhere between 9 and 14" in Estes Park. It is heavy and wet. Judy got as much in Fort Collins but also lost power. Adam drained the water pipes and power was out until 6:45 pm last night. They were able to stay with Adam's parents, Fern and Alan, also in Fort Collins, but with power. Today Judy is catching up on laundry and putting a load or two through the dishwasher. She agrees that it is amazing how we take certain things for granted - like electricity!
Next infusion: November 11
Tuesday, October 18, 2011
October 18, 2011
I have very good news. I was very concerned about the CT scan and just talked with my oncologist. He said nothing he saw was worrisome at all!!!!!
There is a small (7mm) cyst near the bowel. He said it is hollow and he has never seen a hollow cyst become diseased. The vaginal wall is not seen well on any CT scan - that is why he does the vaginal and rectal exam each cycle. He has not seen or felt anything of concern! The lymph nodes are totally unchanged. One is 18 x 11 mm; the other 12 x 10 mm. He still thinks their enlargement is the result of the surgery - even after 5 months. They have to be a certain size to be considered worrisome and there has been absolutely no change from the last CT scan. He is not at all concerned.
So now I am getting nice deep breaths. I will see him on Friday for the 4th infusion. In a way, I'm looking forward to it. I will then be 2/3 through my treatment.
My hair is about an inch long now and when I shampoo it, I actually have to style it a bit. I figure I can start training it to go the direction I want. It is coming in pretty curly. I will have the hair on my neck trimmed tomorrow so it looks as if I intended my hair to be this short.
Ever since the last infusion I have had a stuffed nose. I am using a Neti pot and it does help. I asked him if that could be a side effect of the chemo. He indicated the chemo could cause the nasal passage to become inflamed. That is most of what I am experiencing - I can blow and blow and blow and nothing comes out. It is NOT a cold. There is no fever and no colored discharge. Sometimes there is mucus and blood but that's all. He said my nasal passages are swollen - that's all.
Even though it is cold today, it's a beautiful day. We went into the RMNP Sunday to see elk in rut before the end of that season. We drove out to Moraine Park - we eventually saw a small herd over by the Big Thompson river. There were probably a dozen in this bull's harem - very disappointing. So we drove home. Yesterday we had about two dozen in our yard! No point in having gone anywhere - they were right here!
There is a small (7mm) cyst near the bowel. He said it is hollow and he has never seen a hollow cyst become diseased. The vaginal wall is not seen well on any CT scan - that is why he does the vaginal and rectal exam each cycle. He has not seen or felt anything of concern! The lymph nodes are totally unchanged. One is 18 x 11 mm; the other 12 x 10 mm. He still thinks their enlargement is the result of the surgery - even after 5 months. They have to be a certain size to be considered worrisome and there has been absolutely no change from the last CT scan. He is not at all concerned.
So now I am getting nice deep breaths. I will see him on Friday for the 4th infusion. In a way, I'm looking forward to it. I will then be 2/3 through my treatment.
My hair is about an inch long now and when I shampoo it, I actually have to style it a bit. I figure I can start training it to go the direction I want. It is coming in pretty curly. I will have the hair on my neck trimmed tomorrow so it looks as if I intended my hair to be this short.
Ever since the last infusion I have had a stuffed nose. I am using a Neti pot and it does help. I asked him if that could be a side effect of the chemo. He indicated the chemo could cause the nasal passage to become inflamed. That is most of what I am experiencing - I can blow and blow and blow and nothing comes out. It is NOT a cold. There is no fever and no colored discharge. Sometimes there is mucus and blood but that's all. He said my nasal passages are swollen - that's all.
Even though it is cold today, it's a beautiful day. We went into the RMNP Sunday to see elk in rut before the end of that season. We drove out to Moraine Park - we eventually saw a small herd over by the Big Thompson river. There were probably a dozen in this bull's harem - very disappointing. So we drove home. Yesterday we had about two dozen in our yard! No point in having gone anywhere - they were right here!
Friday, October 14, 2011
October 14, 2011
This whole process is like riding a roller coaster.
I had a CT scan Tuesday. I knew they were looking at two lymph nodes that were enlarged from the first scan. When my oncology nurse hadn't called me by this afternoon, I decided to call her. She hadn't wanted to call me. The two lymph nodes are still there - still enlarged. In addition there is a 1/4" 'something' on the vaginal cuff (where the cervix used to be). When the scan was read, the remark made was that it is most likely scar tissue from the surgery. Dr. Behbakht will read the scan itself and be able to tell us his best estimate of what is going on.
I have asked for the doctor to call me on Tuesday so we don't have to sweat this out all the way to Friday. I don't like it - have cried about it - have thought it through and have decided that I am NOT going to overthink this. I am still feeling well - still not showing severe side effects. So I am going to go with that. We will be discussing what I should be looking for in case this is a recurrence of the disease (oh, the euphemisms they use to avoid saying that terrible "C" word!). My oncology nurse reminded me that how I am feeling is more important than what is only a possibility - and probably nothing about which to worry. That doesn't mean I am in denial. I am taking one day at a time.
There is one side effect added to my list. I have distance blurry vision - and it is only slightly blurred. I know this will go away at the end of the chemo cycles. I can read and do my handwork just fine. For small handwork like tatting, Hardanger and stitching, I have used magnifying glasses for years. I can see just fine with them. Right now I am repairing a piece of Hardanger for a friend. Honestly, the worst side effect I am dealing with is the constipation. Since this happens around each infusion, I am trying to be creative about possible solutions ahead of time so it doesn't affect me for so many days when I get the infusion.
My lab work was just fine on Thursday, another indication I am doing well: BP 126/76; heartrate 64; wbc 3.7; H&H 13.4 & 40 and platelets: 247. All those mean is that even during week #2 (when numbers tend to be lower) following my latest infusion my body is recovering very well.
I hope the Dr. calls me - probably during his lunch break and doesn't wait until Friday.
At Judy's suggestion, for my last infusion, I developed and designed a table of each day of the cycle by date and by day# and a list of the side effects. I put an 'X' in the box for the day I experience that particular symptom and leave blank days when I don't have the symptom. I presented this to my Dr. and he LOVED it - said he wished all his patients would do this. It makes so much sense because if I experience a given symptom, after three weeks, honestly I can't remember when it was and for how long. So I have prepared some blanks for him to duplicate and pass out to his patients to use. He actually turned to me and said, "I don't have anything more to ask you - it's all right here in front of me! Thank you!"
I do have another piece of good news. I removed my hat for him to see how my hair has not fallen out, but has actually grown. I had a buzz cut seven weeks ago and wanted to know just when it was going to come out. He looked at me and smiled. "If you haven't lost it by now, you probably aren't going to!" I was thrilled and it is now about 3/4" long. By Christmas, I may even have a reasonable 'DO'.
It's time for me to go to bed.
On my facebook page, someone posted a saying I really liked. (Please do not post anything to reference this blog or it's purpose - thank you). I will end with this tonight:
I'm a strong person
But every now and then
I would like someone
to take my hand and say
everything will be alright
I had a CT scan Tuesday. I knew they were looking at two lymph nodes that were enlarged from the first scan. When my oncology nurse hadn't called me by this afternoon, I decided to call her. She hadn't wanted to call me. The two lymph nodes are still there - still enlarged. In addition there is a 1/4" 'something' on the vaginal cuff (where the cervix used to be). When the scan was read, the remark made was that it is most likely scar tissue from the surgery. Dr. Behbakht will read the scan itself and be able to tell us his best estimate of what is going on.
I have asked for the doctor to call me on Tuesday so we don't have to sweat this out all the way to Friday. I don't like it - have cried about it - have thought it through and have decided that I am NOT going to overthink this. I am still feeling well - still not showing severe side effects. So I am going to go with that. We will be discussing what I should be looking for in case this is a recurrence of the disease (oh, the euphemisms they use to avoid saying that terrible "C" word!). My oncology nurse reminded me that how I am feeling is more important than what is only a possibility - and probably nothing about which to worry. That doesn't mean I am in denial. I am taking one day at a time.
There is one side effect added to my list. I have distance blurry vision - and it is only slightly blurred. I know this will go away at the end of the chemo cycles. I can read and do my handwork just fine. For small handwork like tatting, Hardanger and stitching, I have used magnifying glasses for years. I can see just fine with them. Right now I am repairing a piece of Hardanger for a friend. Honestly, the worst side effect I am dealing with is the constipation. Since this happens around each infusion, I am trying to be creative about possible solutions ahead of time so it doesn't affect me for so many days when I get the infusion.
My lab work was just fine on Thursday, another indication I am doing well: BP 126/76; heartrate 64; wbc 3.7; H&H 13.4 & 40 and platelets: 247. All those mean is that even during week #2 (when numbers tend to be lower) following my latest infusion my body is recovering very well.
I hope the Dr. calls me - probably during his lunch break and doesn't wait until Friday.
At Judy's suggestion, for my last infusion, I developed and designed a table of each day of the cycle by date and by day# and a list of the side effects. I put an 'X' in the box for the day I experience that particular symptom and leave blank days when I don't have the symptom. I presented this to my Dr. and he LOVED it - said he wished all his patients would do this. It makes so much sense because if I experience a given symptom, after three weeks, honestly I can't remember when it was and for how long. So I have prepared some blanks for him to duplicate and pass out to his patients to use. He actually turned to me and said, "I don't have anything more to ask you - it's all right here in front of me! Thank you!"
I do have another piece of good news. I removed my hat for him to see how my hair has not fallen out, but has actually grown. I had a buzz cut seven weeks ago and wanted to know just when it was going to come out. He looked at me and smiled. "If you haven't lost it by now, you probably aren't going to!" I was thrilled and it is now about 3/4" long. By Christmas, I may even have a reasonable 'DO'.
It's time for me to go to bed.
On my facebook page, someone posted a saying I really liked. (Please do not post anything to reference this blog or it's purpose - thank you). I will end with this tonight:
I'm a strong person
But every now and then
I would like someone
to take my hand and say
everything will be alright
Friday, September 30, 2011
#3 Infusion 30 September 2011
I had my 3rd infusion today. The lab work was excellent - all prep work = great! Dr. Behbackt said again how pleased he is that I am in THIS arm of the clinical trial. He is extremely pleased that I am having so few side effects. I showed him my buzz cut 'do', cut six weeks ago and asked him when would I lose my hair. He told me that if I had not lost it by now, I would PROBABLY NOT LOSE IT AT ALL!!!! I can't tell you how pleased I am about that news. I also asked him about the CAT (not PET) scan with contrast and my concern about the two lymph nodes picked up in the scan just before my first infusion He told me he was NOT concerned about them and expected to find NOTHING!!!! I have to have the scan as part of requirements for the trial - one after every 3rd infusion.
They kept to their original pre-med regime of giving me only half the Benedryl - 25 mg. I was told it is the Benedryl that gives me the cotton mouth. Thank you, Bill, for the suggestion of lemon drops. That should stimulate saliva and reduce the effect of the Benedryl.
I followed up on a suggestion of Judy's to keep track of the side effects on a day-to-day basis in chart form. I gave the Dr. a copy of this last infusion side effects. His said he wished every patient would do this. And that he would like to have a copy of it to give to every patient under his care. I am thrilled. He said he had no questions about the effects since the last infusion because he could see it all. I am going to tweak it a bit to 'clean' it up and send him a copy he can copy.
All in all, it was a terrific day! I was not nervous about the infusion - it went very well. The bevacizumab (Avastin) was given over 1 1/2 hours last infusion. Today, over 1 hour and starting next infusion, over 1/2 hour and it will remain 1/2 hour from then on. I am not having any ill effects or allergic reaction.
I should have decent hair length by Thanksgiving or Christmas! Hallelujah!
I think I have something to be very thankful for this year.
They kept to their original pre-med regime of giving me only half the Benedryl - 25 mg. I was told it is the Benedryl that gives me the cotton mouth. Thank you, Bill, for the suggestion of lemon drops. That should stimulate saliva and reduce the effect of the Benedryl.
I followed up on a suggestion of Judy's to keep track of the side effects on a day-to-day basis in chart form. I gave the Dr. a copy of this last infusion side effects. His said he wished every patient would do this. And that he would like to have a copy of it to give to every patient under his care. I am thrilled. He said he had no questions about the effects since the last infusion because he could see it all. I am going to tweak it a bit to 'clean' it up and send him a copy he can copy.
All in all, it was a terrific day! I was not nervous about the infusion - it went very well. The bevacizumab (Avastin) was given over 1 1/2 hours last infusion. Today, over 1 hour and starting next infusion, over 1/2 hour and it will remain 1/2 hour from then on. I am not having any ill effects or allergic reaction.
I should have decent hair length by Thanksgiving or Christmas! Hallelujah!
I think I have something to be very thankful for this year.
Monday, September 26, 2011
26 September 2011
I have been negligent about posting. Don't think I am doing poorly. I'm not. In fact, I am so busy I forget to post. I continue to feel well. It is amazing to me - this was not what I expected from chemotherapy. The only side effects I had with the second infusion (cottonmouth, headache and no taste for one meal) have dissipated and the only other side effect prevalent is that the good affects for my RA only last about two weeks. Week three was bad, but that also coincided with a turn in the weather: a drop in temperature and rain. This week is actually week #4 because my Dr. was not going to be there last Friday, so it was postponed for a week. The weather has changed back to summer - nice, mid-70's, sunny, no rain. The forecast is welcomed. I am not ready to give up on summer warmth.
I had my lab work done last Thursday, as usual. My BP was 136/82, heart rate 74, white BC count 4.4, platelets 149, RBC 14 and 43 - all normal.
After this infusion I have to wait one week and then have a follow-up PETscan with contrast. That is scheduled for October 11. This follow-up PETscan is required after every three infusions. I don't like being exposed to this much radiation but the cancer is worse. So, if this helps them see something sooner, so much the better. They will be looking at two lymph nodes that were prominent on the last PETscan due (they think) to inflammation following the surgery. That upset me for a day until I talked again with the oncology nurse. So I am trying to put that aside and not worry about something over which I have no control.
I had my lab work done last Thursday, as usual. My BP was 136/82, heart rate 74, white BC count 4.4, platelets 149, RBC 14 and 43 - all normal.
After this infusion I have to wait one week and then have a follow-up PETscan with contrast. That is scheduled for October 11. This follow-up PETscan is required after every three infusions. I don't like being exposed to this much radiation but the cancer is worse. So, if this helps them see something sooner, so much the better. They will be looking at two lymph nodes that were prominent on the last PETscan due (they think) to inflammation following the surgery. That upset me for a day until I talked again with the oncology nurse. So I am trying to put that aside and not worry about something over which I have no control.
Friday, September 16, 2011
16 September 2011
I have mentioned before that this whole process is something I can never get away from. This came home to roost yesterday. As usual, I went in for lab work and BP. No problem. My BP was 128/60, heart rate 74. My lab work was fine with white blood cells a little low which is completely to be expected in week two of this second cycle. I talked with Sid, my GYN oncology nurse at Anschutz and she told me I would need to have another CAT scan with contrast. This alarmed me but she said because I am in the trial, they have to follow the 'formula' and another CAT scan is called for after every three infusions. I don't like this - it is a lot of exposure to x-rays and more often than I want. I have to accept that but then she went on to say that they would be specifically looking at two lymph nodes in my abdomen that were larger than normal in the previous scan. This sent me into overload and I had a miserable night. I decided to call her back this morning and talk with her about it because we were very upset. I told her I thought I was CLEAR and she said I am. She apologized for upsetting me and went through it again. I said I guess I was over thinking this and she said, "You are but I can understand your concern." She will tell Dr. Behbakht (pronounced BAY' bachd) about her comment, upsetting me and my concern over them. She ended by saying she should not have even mentioned it - that the only reason they are even aware of them is that I am in the study - otherwise, they wouldn't be concerned about them at all.
I feel better after talking with her this morning and am trying to put it on the shelf where it belongs. It is amazing how a small comment can cause such a big reaction. Being sleep-deprived this morning didn't help my reaction. I think both of us will be looking for those lymph nodes to have shrunk in the next CAT scan October 11. Her explanation is that there is a good possibility that they were enlarged due to inflammation from the surgery. Hope she is right.
This is a roller coaster!!!!!
I feel better after talking with her this morning and am trying to put it on the shelf where it belongs. It is amazing how a small comment can cause such a big reaction. Being sleep-deprived this morning didn't help my reaction. I think both of us will be looking for those lymph nodes to have shrunk in the next CAT scan October 11. Her explanation is that there is a good possibility that they were enlarged due to inflammation from the surgery. Hope she is right.
This is a roller coaster!!!!!
Saturday, September 10, 2011
9 September 2011
I had the 2nd infusion a week ago yesterday. The side effects I had over the weekend were very minor: cotton-mouth and the beginnings of the chemo headache. Dr. Bekbaht said I should take the Zofran (anti-nausea) pre-emptively so I took one Saturday night although I did not even have a hint of greasiness or nausea. I took another one Sunday morning because we were going to a 50th Anniversary party and I didn't want any problem. Again I didn't even have the hint of queasiness so did not take another one - absolutely no problem. I did have the chemo headache with eyes aching for three and a half days - Sunday through Wednesday mid-day. Constipation seems to go with the weekend following the infusion and I have mastered it by stopping taking the iron pill and upping the Phillips Milk of Magnesia pills to two for the weekend. Then I am back on schedule and can resume the iron pill without having any difficulty. Nothing since and no other symptoms of side-effects. I know I am fortunate - Dave says I may be one of those people who breezes through this. I hope so but am not expecting to go through all six infusions without something else going on.
Because I could not stay on Norvasc for high blood pressure, my primary doctor switched me to Clonidine. I am on .2 mg morning and night. It is really doing a terrific job. When my labs were checked on Thursday, my blood pressure was 120/60 with a heartrate of 74 (after some walking) This is terrific in light of the fact that the Avastin (bevacizumab) will increase my BP over time. The rest of my labs were also good - WBC 2.7; RBC 13.4 and 40.5. The platelets were still in the acceptable range but lower than before this last infusion, at 101. It is normal during chemo for platelets to go down.
We went down to Fort Collins on Thursday, ran some errands and ate dinner with Judy and family. I had worn my wig the first time we saw the kids after my haircut. I decided to wear a tied scarf cap on Thursday and the kids simply were terrific! They liked the cap and were very matter-of-fact about it. Then I asked Vivian if she would like to see my buzz cut (it has grown to over 1/4" since I had it cut off). She did want to - liked the haircut and ran her fingers over my very short hair. Sid touched my head, too, but didn't seem interested in running his fingers through it. They both are terrific about what I am experiencing and I love their casualness about it.
I am feeling very well - not experiencing fatigue. I continue to go to PT (Medicare is paying for another two weeks) for leg strength, cardiovascular improvement and shoulder/upper arm strength. The first exercise I do is the recumbent stepper. I love that machine - no impact on my knees but it helps me strengthen my knees and legs. I can really feel the difference. Also, it does NOT hurt my back. I am up to resistance of 3/4 for 15 minutes. For the shoulder/upper arm strengthening, I do exercises with 1#, 2# and 3# weights. I no longer have the upper arm/shoulder pain I had for which I initially started this PT. One of our errands Thursday was to pick up 1#, 2# and 3# weights at the SNIAGRAB sale from Sports Authority. I bought two sets so I can balance the weight lifting. I hope to continue at least two days of PT throughout my chemo. After next week I will have have to pay for the use of the recumbent stepper - $5.00 for 1/2 hour. Not bad!!
Because I could not stay on Norvasc for high blood pressure, my primary doctor switched me to Clonidine. I am on .2 mg morning and night. It is really doing a terrific job. When my labs were checked on Thursday, my blood pressure was 120/60 with a heartrate of 74 (after some walking) This is terrific in light of the fact that the Avastin (bevacizumab) will increase my BP over time. The rest of my labs were also good - WBC 2.7; RBC 13.4 and 40.5. The platelets were still in the acceptable range but lower than before this last infusion, at 101. It is normal during chemo for platelets to go down.
We went down to Fort Collins on Thursday, ran some errands and ate dinner with Judy and family. I had worn my wig the first time we saw the kids after my haircut. I decided to wear a tied scarf cap on Thursday and the kids simply were terrific! They liked the cap and were very matter-of-fact about it. Then I asked Vivian if she would like to see my buzz cut (it has grown to over 1/4" since I had it cut off). She did want to - liked the haircut and ran her fingers over my very short hair. Sid touched my head, too, but didn't seem interested in running his fingers through it. They both are terrific about what I am experiencing and I love their casualness about it.
I am feeling very well - not experiencing fatigue. I continue to go to PT (Medicare is paying for another two weeks) for leg strength, cardiovascular improvement and shoulder/upper arm strength. The first exercise I do is the recumbent stepper. I love that machine - no impact on my knees but it helps me strengthen my knees and legs. I can really feel the difference. Also, it does NOT hurt my back. I am up to resistance of 3/4 for 15 minutes. For the shoulder/upper arm strengthening, I do exercises with 1#, 2# and 3# weights. I no longer have the upper arm/shoulder pain I had for which I initially started this PT. One of our errands Thursday was to pick up 1#, 2# and 3# weights at the SNIAGRAB sale from Sports Authority. I bought two sets so I can balance the weight lifting. I hope to continue at least two days of PT throughout my chemo. After next week I will have have to pay for the use of the recumbent stepper - $5.00 for 1/2 hour. Not bad!!
Saturday, September 3, 2011
Infusion #2 - Part B
We went in yesterday for the #2 Infusion. Everything went extremely well. They halved the IV Benadryl and I had absolutely no problem at all. Instead of 50 mg, I received 25 mg. Now we know that is the right amount for me. I asked about not getting it at all, but they don't want to eliminate it altogether. It will help me NOT have an anaphylactic shock or allergic reaction to the chemo drugs. The whole infusion took nearly 5 hours. The pre-meds are given and then I have to wait for one hour before starting the treatments. Ixebepilone was given first (took one hour); then the carboplatin (another hour); then the bevacizumab (Avastin) for 1 1/2 hours. With the next infusion, that biologic bevacizumab will be given over one hour; from then on over 30 minutes.
I felt well enough that we drove into Boulder and went to dinner. On the way, we were in the most torrential downpour I have seen since living in New Jersey. For about 1/2 hour we were hit with rain and hail, with standing water on the road. We didn't dare pull over and stop because the visibility was virtually zero. When we pulled out of it driving west, we had beautiful blue sky. What a trip. We drove Judy back to her car and did a little shopping in Longmont before getting home about 9:00 pm. That made for a very long day.
The great thing is that so far I am doing fine and not experiencing the worst part of getting chemo. Although I am tired today, I don't feel it is chemo tired - it is being in the fresh air and steering the sailboat tired. I think I will sleep very well tonight.
I felt well enough that we drove into Boulder and went to dinner. On the way, we were in the most torrential downpour I have seen since living in New Jersey. For about 1/2 hour we were hit with rain and hail, with standing water on the road. We didn't dare pull over and stop because the visibility was virtually zero. When we pulled out of it driving west, we had beautiful blue sky. What a trip. We drove Judy back to her car and did a little shopping in Longmont before getting home about 9:00 pm. That made for a very long day.
The great thing is that so far I am doing fine and not experiencing the worst part of getting chemo. Although I am tired today, I don't feel it is chemo tired - it is being in the fresh air and steering the sailboat tired. I think I will sleep very well tonight.
Thursday, September 1, 2011
#2 Infusion - part A
I am saying part A because every Thursday I have to have labs and BP done in order to see IF I can go ahead with the infusion tomorrow. My BP this morning was 126/70 and heart rate 60. I don't know what the blood work shows yet, but am confident that they are okay. I had been concerned earlier this week because I thought my BP was running high. We have just bought a blood pressure monitor and it was showing very high BP on me. When I saw the triage nurse this morning she suggested that it might be faulty since my pressure this morning was so good. I will take it in with me next week and try to calibrate it with what she gets. So...needless worry on my part.
I have been thinking about a lot of things lately. Dave has gone back to working at the "Y". Last week he worked five days and the one day he didn't work, we had to take the car in for servicing. I was feeling resentful that he was gone so much, leaving me here alone. I think I understand now why I had those feelings. I don't mind his being gone (goodness, he worked outside the home for xx years and was gone every weekday. I was on my own for years and years, taking are of errands and children, working myself and running my store). I think it comes down to the fact that he can 'get away' from my illness. I know he doesn't 100% but he is busy there and doesn't have to see me with no wig on or look at me and wonder how I am feeling. He can escape, if only for a few hours. I can't! It is with me every minute of every day. There is no 'getting away' for me. I look forward to being DONE with this chemo so that I can enjoy that 'very low risk of recurrence' the Fort Collins tumor board reported on my case.
I have no idea how I will react to tomorrow's infusion. I do know, based on the first infusion that the IV Benadryl will be cut in half. I sure hope that takes care of my reaction to it. My appointment is at 9:30 for the lab work, which means gaining access to the Power Port. Then I see the Dr. at 10:30 and begin the infusion after that. Being a private person, I don't look forward to the pelvic exam each and every time. I know it's necessary but I don't have to like it.
It turns out that I needn't have gone in for lab work today. Because my appointment is tomorrow, I can skip the third week of lab work up here. That's good, but I wasn't told until after I had had it done. No harm done...just didn't need it. Of course, I had to go in for my BP anyway so it's no biggie. That's fewer labs I will need tomorrow.
I have been thinking about a lot of things lately. Dave has gone back to working at the "Y". Last week he worked five days and the one day he didn't work, we had to take the car in for servicing. I was feeling resentful that he was gone so much, leaving me here alone. I think I understand now why I had those feelings. I don't mind his being gone (goodness, he worked outside the home for xx years and was gone every weekday. I was on my own for years and years, taking are of errands and children, working myself and running my store). I think it comes down to the fact that he can 'get away' from my illness. I know he doesn't 100% but he is busy there and doesn't have to see me with no wig on or look at me and wonder how I am feeling. He can escape, if only for a few hours. I can't! It is with me every minute of every day. There is no 'getting away' for me. I look forward to being DONE with this chemo so that I can enjoy that 'very low risk of recurrence' the Fort Collins tumor board reported on my case.
I have no idea how I will react to tomorrow's infusion. I do know, based on the first infusion that the IV Benadryl will be cut in half. I sure hope that takes care of my reaction to it. My appointment is at 9:30 for the lab work, which means gaining access to the Power Port. Then I see the Dr. at 10:30 and begin the infusion after that. Being a private person, I don't look forward to the pelvic exam each and every time. I know it's necessary but I don't have to like it.
It turns out that I needn't have gone in for lab work today. Because my appointment is tomorrow, I can skip the third week of lab work up here. That's good, but I wasn't told until after I had had it done. No harm done...just didn't need it. Of course, I had to go in for my BP anyway so it's no biggie. That's fewer labs I will need tomorrow.
Friday, August 26, 2011
BP
I had my labs done again yesterday. All the blood counts are perfectly normal - right where they should be. However, my BP is up to 140/80. I had a new prescription for replacing the Norvasc which I can't take due to the clinical trial. I didn't want to take it since my BP was perfect last week. Based on the BP yesterday, I picked up the prescription. I have to take one in the morning and one at night. One of the side effects is being drowsy. I fought nodding off all morning today. If the same thing happens through the weekend, I will talk with my internist Monday. I really don't want to be so sleepy.
The nurse from CU called me today. I have to see the Dr. before each infusion and he won't be available on the 23rd. After discussing the options with her, we decided to move my #3 Infusion to Sept 30. That will make it four weeks, not three, but it will give me a full week more to recover from #2. It was either that or make two trips to Aurora the week of the 23rd. She indicated no problem with it being four weeks - not three. Hopefully, there won't be too many of these rescheduled appointments. That will only delay the ending of this whole thing.
The nurse from CU called me today. I have to see the Dr. before each infusion and he won't be available on the 23rd. After discussing the options with her, we decided to move my #3 Infusion to Sept 30. That will make it four weeks, not three, but it will give me a full week more to recover from #2. It was either that or make two trips to Aurora the week of the 23rd. She indicated no problem with it being four weeks - not three. Hopefully, there won't be too many of these rescheduled appointments. That will only delay the ending of this whole thing.
Tuesday, August 23, 2011
Too soon
Maybe I had my hair cut off too soon. I am not showing any signs of losing what is now the buzz cut and it is growing. We went to dinner (our usual Tuesday night dinner) at Poppy's and several at the table did not know I was wearing a wig - TADA!!! I am comfortable going out with it on although I am also very comfortable taking it off when I get home. Tonight we celebrated a friend's birthday - Barb is 96 today!!! There were days this spring when I didn't think she would make her 96th because of the accident she was in when someone hit her headon. She is very lucky and we all celebrated her day with her, which is a very good thing!
I am still feeling fine and am not exhibiting any side effects of either the chemo or RA. I am walking very well.
Today there was a 5.8 earthquake on the east coast - in Virginia at 1:51 EDT. Although this was a relatively small quake, it was felt as far south as Georgia, as far up the coast as Manchester, NH, as far north as Toronto, Canada and as far west as Chicago, IL.
I am still feeling fine and am not exhibiting any side effects of either the chemo or RA. I am walking very well.
Today there was a 5.8 earthquake on the east coast - in Virginia at 1:51 EDT. Although this was a relatively small quake, it was felt as far south as Georgia, as far up the coast as Manchester, NH, as far north as Toronto, Canada and as far west as Chicago, IL.
Saturday, August 20, 2011
Hair
I know all the arguments for WHY there is hair loss during chemotherapy - the chemo kills all the fast growing cells which include the cancer cells AND hair cells. That does not eliminate the horror of knowing that the hair loss is totally unfeminine (to me), totally unwarranted from a personal point of view and totally unavoidable. It is demoralizing and an insult to an otherwise very difficult process. I could not have done the cutting yesterday without the moral support of my daughter, Judy. She is a terrific source of strength. The women at the spa were aware, of course, why I was sitting there and not JUST getting a haircut. They were all kind, understanding and not overly solicitous. If they had been I'm afraid the few tears shed would have been a full blown meltdown. As it was, I survived it much better than I thought I would. I still am shocked when I suddenly see myself in the mirror, but suppose I will get used to it. At least I don't have lumps and bumps - phrenology would have a very difficult getting any results on my head.
And I had them trim and style the wig a little. I left wearing the wig. When I got to Judy's house, I was interested in the grandchildren's take on it. Vivian was very matter-of-fact and said I looked like Baya - and off she ran. When Sid came in, I was intrigued with his assessment. He stood by the door, crossed his arms over his chest and cocked his head from side to side, sizing up the overall effect. He then announced, "It looks like you, Baya, and the color is right!" So there!!! Rather a good observer, I think.
The gal who cut my hair off refused to charge me. It's a very kind thing for her to have done. One of the other gals there had watched my hair come off, realized why and came over to tell me that she specialized in make-up and had worked with several cancer women and would love to give me an hour - again at no cost. I will do that...and tip her very well. That is a wonderful spa to have available to me.
Tonight was my first 'outing' to test my wig's reception. As a graduated 'Newcomers' a friend and I established the "After Five" group for Wine and Cheese. It was held in the Rocky Mountain National Park tonight from 5-7 and was a good experience. My wig passed with glowing colors!
When I am at home, I don't wear the wig very much. I have a cap that is navy blue that feels a whole lot more comfortable. I do have to be careful of not getting sunburned so am being more diligent about sitting in shade. Dave accepts the baldness with ease and told me this morning, I have a very good looking head. I'll take that!
I continue to feel well and think I will for the next two weeks. 2nd Infusion = September 2.
Bald head is the new norm - for awhile. I'm looking forward to seeing how it comes back in. I will NOT take a picture without the wig or cap on.
And I had them trim and style the wig a little. I left wearing the wig. When I got to Judy's house, I was interested in the grandchildren's take on it. Vivian was very matter-of-fact and said I looked like Baya - and off she ran. When Sid came in, I was intrigued with his assessment. He stood by the door, crossed his arms over his chest and cocked his head from side to side, sizing up the overall effect. He then announced, "It looks like you, Baya, and the color is right!" So there!!! Rather a good observer, I think.
The gal who cut my hair off refused to charge me. It's a very kind thing for her to have done. One of the other gals there had watched my hair come off, realized why and came over to tell me that she specialized in make-up and had worked with several cancer women and would love to give me an hour - again at no cost. I will do that...and tip her very well. That is a wonderful spa to have available to me.
Tonight was my first 'outing' to test my wig's reception. As a graduated 'Newcomers' a friend and I established the "After Five" group for Wine and Cheese. It was held in the Rocky Mountain National Park tonight from 5-7 and was a good experience. My wig passed with glowing colors!
When I am at home, I don't wear the wig very much. I have a cap that is navy blue that feels a whole lot more comfortable. I do have to be careful of not getting sunburned so am being more diligent about sitting in shade. Dave accepts the baldness with ease and told me this morning, I have a very good looking head. I'll take that!
I continue to feel well and think I will for the next two weeks. 2nd Infusion = September 2.
Bald head is the new norm - for awhile. I'm looking forward to seeing how it comes back in. I will NOT take a picture without the wig or cap on.
Thursday, August 18, 2011
Labs Today
All my labs are good - WBC 5.8 (norm = 4-11); Platelets 246 (norm = 130-440); Hemoglobin and Hematocrit 11.6 (she didn't give me the normal range) but said everything was stable.
I came across a saying today and I like it very much: "There comes a time in your life when you walk away from all the drama and people who create it You surround yourself with people who make you laugh.. Forget the bad and focus on the good Love the people who treat you right, pray for the ones who don't. Life is too short to be anything but happy. Falling down is a part of life; getting back up is living!"
I will get back up!
I came across a saying today and I like it very much: "There comes a time in your life when you walk away from all the drama and people who create it You surround yourself with people who make you laugh.. Forget the bad and focus on the good Love the people who treat you right, pray for the ones who don't. Life is too short to be anything but happy. Falling down is a part of life; getting back up is living!"
I will get back up!
Good Labs
I had my weekly labs done today and, although I don't know what the blood work showed, I'm sure they were fine. What really pleased me was the BP. Two weeks ago I had to go off one of my BP meds - not allowed on the clinical trial. My BP this am was 126/78 - near perfect, as the Triage Nurse said. So...today is a good day - no longer a metallic taste in my mouth, water tastes good again and so does Blueberry-Pomegranate Gatorade, although I still feel like I'm venturing into Star Wars when I ask for a drink that is indeed 'blue'!! I did PT yesterday and still feel good. After going in for the weekly lab work, Dave and I went over to the Estes Park Farmers' Market. We parked and I walked the whole length of the market and back - a couple of times. I also saw several friends, stopped and talked with them - glad to see them all. I also petted a beautiful, very large Golden Retriever - name was Garson. He was terribly interested in all the new smells available to him. I am trying to eat organic foods. We are eating many more veggies and fruits - all organic. Eating organically, I am able to take care of one of the side effects I don't want, caused by the chemo - constipation The fruit I eat for breakfast does the trick.
Tomorrow is spa day. <Sigh>
Tomorrow is spa day. <Sigh>
Tuesday, August 16, 2011
Physical Therapy
I took another Zofran this morning and then went to physical therapy. I was on the incumbent stepper for 15 minutes. My knees are not hurting and today, I prettied up my hair the way I like it. Might as well enjoy it for another few days! That meant I cut it so it curled the way I want it. Maybe the wig can be styled more closely to how I have it today. That would please me - make it less obvious that I am 'ill' with cancer.
Water is not tasting as good as it has so I will experiment with additives - Gatorade or fruit in the water. I am amazed how much that affects how much water I do (or NOT) drink. The filter in the frig is current so it is the chemo, to be sure. I will try lime, strawberries, etc. and let people know which is best for me.
Water is not tasting as good as it has so I will experiment with additives - Gatorade or fruit in the water. I am amazed how much that affects how much water I do (or NOT) drink. The filter in the frig is current so it is the chemo, to be sure. I will try lime, strawberries, etc. and let people know which is best for me.
Monday, August 15, 2011
Day Four
They told me that from Day 4 through Day 9 I might feel nauseous. I can't really say it was full-blown nausea I felt this morning - just a slightly queasy feeling. So I took one Zofran and was able to get on top of it without any difficulties. I didn't need to add the compazine to it. So far - a good day.
Saturday, August 13, 2011
Background of Discovery
I was shocked to discover on Mother's Day that I had uterine cancer (how's that for irony?). On May 31 I had a total hysterectomy. In a lot of ways I have very lucky. First of all, I did not ignore the initial symptoms. Along with all the female organs removed, I also had 48 lymph nodes removed. They were clear of any cancer. There was a 1 mm invasion on the omentum.
In researching possible clinical trials appropriate for me, I was most interested in either Mayo Clinic, Rochester MN or M. D. Anderson, Houston TX. I had a patient navigator from the hospital where I had the surgery who found what we hoped would be the perfect clinical trial for me. My oncologist in Fort Collins, CO looked it over and thoroughly endorsed it. I also have a cousin who is an oncology radiologist at DuPage Medical Group in Illinois. She also endorsed this particular clinical trial. I was put in touch with Colorado University, Anschutz Cancer Center in Aurora, CO and enrolled in the clinical trial. In order to be enrolled I had to be off my medicine for rheumatoid arthritis for four weeks.
I have never been so completely documented! All the initial tests (PET scan, blood work, mammogram, ultra sound, CAT scan) show there is no active cancer - so no macro cells. The one item that made me eligible for the clinical trial was that 1 mm invasion on the omentum.
The plan randomized me into Arm 3 of the clinical trial. This is a Phase II trial. I will be on Ixabepilone, Carboplatin and Bevacizumab (Avastin). All who are in the know say this is the perfect arm to be in. My oncologist at Anschutz told me yesterday this is the one he wanted to see me in. I will have six infusions, three weeks apart. After the initial chemo treatment, I will stay on the Avastin indefinitely, receiving that infusion once every three weeks.
I had my first infusion yesterday. I was given premeds to help have no reaction to the chemo drugs. Unfortunately I had one reaction considered rare. One of the premeds was IV Benadryl. That usually knocks people out. Unfortunately, it gave me restless leg syndrome for over three hours. The Ativan given to counteract the Benadryl took forever to take affect. I thought I was going to climb the walls!!!
I have had no adverse reaction to the chemo as of today. In fact I woke up this morning with the realization that the symptoms of RA were not there. No pain in my knees, wrists, thumbs, elbows or shoulders!!!
I will lose my hair - something that bothers me tremendously. I know it will grow back but it is so hard to come to grips with the fact that although I feel well and there is no active cancer in me at the moment, I will be sick, fatigued and bald due to the drugs I have to take to make me permanently better. I have made the decision to have my hair cut off next Friday. My daughter and I are going to make an afternoon of spa! I will be having my hair cut off, a facial, hand waxing, manicure and pedicure! She will join me in the spa items and have a haircut (not off). Despite my granddaughter thinking I should get a pink and purple wig, I found one that is my color and similar to my style. I will take the wig with me to see if it can be styled more closely to my hair before it is cut off.
A word here about the support I have. I have the best family in the whole world. They are a tremendous support for me, encouraging me, hugging me when I need it. My husband is awesome and I have renamed him my CHEMO-SABE (remember The Lone Ranger from the 50s?).
I encourage you who are going through chemo for uterine cancer or have gone through it, to comment and post. I welcome suggestions of what to eat, how to deal with the side effects, etc. Become part of my support through this.
Thank you,
Betsy
In researching possible clinical trials appropriate for me, I was most interested in either Mayo Clinic, Rochester MN or M. D. Anderson, Houston TX. I had a patient navigator from the hospital where I had the surgery who found what we hoped would be the perfect clinical trial for me. My oncologist in Fort Collins, CO looked it over and thoroughly endorsed it. I also have a cousin who is an oncology radiologist at DuPage Medical Group in Illinois. She also endorsed this particular clinical trial. I was put in touch with Colorado University, Anschutz Cancer Center in Aurora, CO and enrolled in the clinical trial. In order to be enrolled I had to be off my medicine for rheumatoid arthritis for four weeks.
I have never been so completely documented! All the initial tests (PET scan, blood work, mammogram, ultra sound, CAT scan) show there is no active cancer - so no macro cells. The one item that made me eligible for the clinical trial was that 1 mm invasion on the omentum.
The plan randomized me into Arm 3 of the clinical trial. This is a Phase II trial. I will be on Ixabepilone, Carboplatin and Bevacizumab (Avastin). All who are in the know say this is the perfect arm to be in. My oncologist at Anschutz told me yesterday this is the one he wanted to see me in. I will have six infusions, three weeks apart. After the initial chemo treatment, I will stay on the Avastin indefinitely, receiving that infusion once every three weeks.
I had my first infusion yesterday. I was given premeds to help have no reaction to the chemo drugs. Unfortunately I had one reaction considered rare. One of the premeds was IV Benadryl. That usually knocks people out. Unfortunately, it gave me restless leg syndrome for over three hours. The Ativan given to counteract the Benadryl took forever to take affect. I thought I was going to climb the walls!!!
I have had no adverse reaction to the chemo as of today. In fact I woke up this morning with the realization that the symptoms of RA were not there. No pain in my knees, wrists, thumbs, elbows or shoulders!!!
I will lose my hair - something that bothers me tremendously. I know it will grow back but it is so hard to come to grips with the fact that although I feel well and there is no active cancer in me at the moment, I will be sick, fatigued and bald due to the drugs I have to take to make me permanently better. I have made the decision to have my hair cut off next Friday. My daughter and I are going to make an afternoon of spa! I will be having my hair cut off, a facial, hand waxing, manicure and pedicure! She will join me in the spa items and have a haircut (not off). Despite my granddaughter thinking I should get a pink and purple wig, I found one that is my color and similar to my style. I will take the wig with me to see if it can be styled more closely to my hair before it is cut off.
A word here about the support I have. I have the best family in the whole world. They are a tremendous support for me, encouraging me, hugging me when I need it. My husband is awesome and I have renamed him my CHEMO-SABE (remember The Lone Ranger from the 50s?).
I encourage you who are going through chemo for uterine cancer or have gone through it, to comment and post. I welcome suggestions of what to eat, how to deal with the side effects, etc. Become part of my support through this.
Thank you,
Betsy
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