Family and Friends,
We've had quite a week. As most of you know David's 89 year old mother passed on last Thursday, with her funeral on Monday. Unfortunately Monday was not a good day for me. I felt sick all morning and was happy to get into PJ's and sit in front of the TV by early afternoon. My temperature went up to 102 so David drove me to the office to check on my blood count. The WBC's were high again, 93.0 (normal 3.3 - 10.7) and I started vomiting. They wheel-chaired me over to the hospital for outpatient infusion of an antibiotic. Within an hour I had an allergic reaction with hives from head to toe and shortness of breath. I was then admitted the hospital and the antibiotic changed. Monday night at the hospital was pretty uneventful. Tuesday I felt better in the morning but by afternoon spiked another temperature. Wednesday morning (this morning) I was begging to get out of the hospital. The IV had infiltrated and the nurse was struggling to get another one in. Actually, I was crying and nothing looks more pathetic than a bald headed woman crying. I finally said - 'call Dr. J and tell him to get me out of here!'. It worked - Drs. J and Burdakin both came over and decided I could leave the hospital. Brian picked me up and I'm home. So far I haven't spiked another afternoon temperature so I think I'm good to go.
Why the high WBC's? They believe the Neulasta injection that they gave me a couple days after the treatment to increase my white blood cell count was too much for me (again). They aren't sure why the vomiting and high temp but it could be the high WBC's. They consulted a infectious disease doc and she was stumped too. Nothing turned up on the cultures, urine sample, chest xray, etc. Needless to say they have decided I won't be getting Neulasta ever, ever again!
I'll be home another day and then I can head back to work.
I'm so wishing to have this chemotherapy treatment over.
Keep the thoughts and prayers coming. This time I think David needs them just to handle the the chaos in his life.
Love,
Veronica
Wednesday, April 29, 2009
Saturday, April 18, 2009
Chemo #2 done!
Family and Friends,
I hope this email finds you all well. I'm so happy to report that I completed two full cycles of chemotherapy and I have only two more to go. I'm still no authority on chemotherapy and certainly every protocol or mix of types of chemotherapies are different for everyone but here is what I've experienced over the past couple of week since I wrote you last.
In general the first two weeks following the first chemotherapy I didn't feel well most days. It was better week two than week one but as my friends at MSU would say - not enough to be statistically significant. Day 18 post chemotherapy #1 my hair was falling out. It was due for a wash and I remember all the stories of others losing it in the shower - trust me to say that is true. Every time I put my head in the water the drain plug. Actually it was gross to see hair falling out in chunks. What was left I blew dry and blastered it with hair spray. I went into work and a few people commented gently - luckily for me hair loss is normal at Cancer Care Associates (CCA) so there was no look of shock. I called to make an appointment at Susan's to have my head shaved and the wig fitted. I didn't cry. I just felt sad. The wig to me looked like a helmet and felt big. Next day I went back to Susan's and they spent two hours working on the wig to get the head piece to fit. Two days later I went to my usual hair dresser and she tried to get the wig to look more like my old hair. Not an easy task. Basically, I'll say I spent six hours on my wig. I don't care for it and I'll probably go back to try again - but likely it's as good as it gets. Whenever I'm out in public I wear a wig but whenever I'm home I don't. Only one more thing about hair - taking a shower is much more efficient without it!
How do I feel? Week three is really very normal. I have to say I was productive, my brain worked like my ol' self and I felt good. I had trouble with constipation week one and two, so week three I wrote an article for our CCA Newsletter for the patients on constipation (always trying to write about things I know best). I exercised most every day, certainly not as much as normal but yet I could get downstairs to our exercise room at 5:30am and get into my little zone.
The day before chemotherapy I had my pre-chemotherapy appointment with Cyndi Kresge David's Physician Assistant at the office. Basically my blood count that shot up to 60,000 wbc's about 10 days ago appear's now to have been a reaction to the Neulasta. All else for the pre-vist was okay - no changes in blood pressure, etc but my weight was up two pounds. Cyndi re-evaluated the need for the steroids (pills) the day before the chemotherapy and decided that since I didn't have a reaction to Taxotere the first time, we could eliminate the pills. The difference would be that she would order a higher dose (20mg) of steroids to be given by infusion 30-40 minutes prior to the Taxotere. I'm still going to receive the Neulasta this Monday. If you recall from one of my emails it was Neulasta that caused the severe bone pain and when it hit my sternum I thought I was having a heart attack. I felt like I couldn't breath. It was scary and painful.
Chemotherapy day I had blood drawn in the morning and true to form, I can't seem to have normal blood results no matter what since the surgery. This time my platelets were double normal values. As Dr. Stender said, my bone marrow was just jugging the platelets out. Chemotherapy was still approved, so I was good to go. Dima was my partner for the chemotherapy. It took two needle stabs to get the vein going. First they gave me Aloxi and the steroids. Aloxi is the one that slows the GI track down so I don't get nauseated. It stays with me for at least three days and is the main reason I'm now a true expert on management of constipation. They next started the Cytoxan for about a 40 minute drip. No problems. Then they started the Taxotere and within five minutes I started to cough and felt 'weird'. Sarah my nurse shut off the Taxotere and notified Dr J that I was having a mild reaction to Taxotere. Dr. J recommended more steroids (a different kind) and restarting Taxotere at a slower rate of infusion. That worked and I was able to get through the Taxotere and complete the chemotherapy in 3 1/2 hours. I was well enough to eat dinner and visit with Dima, Brian, Yanni and Brianna most of the evening. David and I really appreciate their support.
Today, I'm not feeling great but I'm fine. My head is still clear - but that veil of fogginess didn't start immediately last time, so I'm not sure when and if that will return. I'm smarter this time in that I'm have no expectations to write the checks for the house-hold bills and try to work on a publishing a paper the weekend following chemotherapy. That was not a good decision last time.
I will say that my care at CCA is really special. When I say it takes a 'village' to treat a patient, I really mean it. Cyndi provides my pre-chemotherapy work-up, Dr. Stender approves my chemo, Dr. J watches me during the chemotherapy, Drs. Burdakin, Huben and Zakalik all maintain a watchful eye - each providing me with their cell phone numbers. I feel fortunate in my care.
I've worked everyday and not missed a beat but the price to pay is I'm tired all evening. I was quick to tears most of the first couple of weeks following the first chemotherapy. I could have a 'pity party' pretty darn quickly - usually when I was driving alone in the car. I use distraction a lot to not think about it. Even when I wrote above how I only have two more treatments remaining. It's not like I really think that's good - I think holy s**t, two more treatments, can I do it?!!! Any treatment after the first is harder because there is no naivete about it. I know what to expect and frankly that doesn't make it any easier. There is no 'pill' to take that reality away.
All is all I'm fine and so appreciate of all your support and prayers.
Love,
Veronica
I hope this email finds you all well. I'm so happy to report that I completed two full cycles of chemotherapy and I have only two more to go. I'm still no authority on chemotherapy and certainly every protocol or mix of types of chemotherapies are different for everyone but here is what I've experienced over the past couple of week since I wrote you last.
In general the first two weeks following the first chemotherapy I didn't feel well most days. It was better week two than week one but as my friends at MSU would say - not enough to be statistically significant. Day 18 post chemotherapy #1 my hair was falling out. It was due for a wash and I remember all the stories of others losing it in the shower - trust me to say that is true. Every time I put my head in the water the drain plug. Actually it was gross to see hair falling out in chunks. What was left I blew dry and blastered it with hair spray. I went into work and a few people commented gently - luckily for me hair loss is normal at Cancer Care Associates (CCA) so there was no look of shock. I called to make an appointment at Susan's to have my head shaved and the wig fitted. I didn't cry. I just felt sad. The wig to me looked like a helmet and felt big. Next day I went back to Susan's and they spent two hours working on the wig to get the head piece to fit. Two days later I went to my usual hair dresser and she tried to get the wig to look more like my old hair. Not an easy task. Basically, I'll say I spent six hours on my wig. I don't care for it and I'll probably go back to try again - but likely it's as good as it gets. Whenever I'm out in public I wear a wig but whenever I'm home I don't. Only one more thing about hair - taking a shower is much more efficient without it!
How do I feel? Week three is really very normal. I have to say I was productive, my brain worked like my ol' self and I felt good. I had trouble with constipation week one and two, so week three I wrote an article for our CCA Newsletter for the patients on constipation (always trying to write about things I know best). I exercised most every day, certainly not as much as normal but yet I could get downstairs to our exercise room at 5:30am and get into my little zone.
The day before chemotherapy I had my pre-chemotherapy appointment with Cyndi Kresge David's Physician Assistant at the office. Basically my blood count that shot up to 60,000 wbc's about 10 days ago appear's now to have been a reaction to the Neulasta. All else for the pre-vist was okay - no changes in blood pressure, etc but my weight was up two pounds. Cyndi re-evaluated the need for the steroids (pills) the day before the chemotherapy and decided that since I didn't have a reaction to Taxotere the first time, we could eliminate the pills. The difference would be that she would order a higher dose (20mg) of steroids to be given by infusion 30-40 minutes prior to the Taxotere. I'm still going to receive the Neulasta this Monday. If you recall from one of my emails it was Neulasta that caused the severe bone pain and when it hit my sternum I thought I was having a heart attack. I felt like I couldn't breath. It was scary and painful.
Chemotherapy day I had blood drawn in the morning and true to form, I can't seem to have normal blood results no matter what since the surgery. This time my platelets were double normal values. As Dr. Stender said, my bone marrow was just jugging the platelets out. Chemotherapy was still approved, so I was good to go. Dima was my partner for the chemotherapy. It took two needle stabs to get the vein going. First they gave me Aloxi and the steroids. Aloxi is the one that slows the GI track down so I don't get nauseated. It stays with me for at least three days and is the main reason I'm now a true expert on management of constipation. They next started the Cytoxan for about a 40 minute drip. No problems. Then they started the Taxotere and within five minutes I started to cough and felt 'weird'. Sarah my nurse shut off the Taxotere and notified Dr J that I was having a mild reaction to Taxotere. Dr. J recommended more steroids (a different kind) and restarting Taxotere at a slower rate of infusion. That worked and I was able to get through the Taxotere and complete the chemotherapy in 3 1/2 hours. I was well enough to eat dinner and visit with Dima, Brian, Yanni and Brianna most of the evening. David and I really appreciate their support.
Today, I'm not feeling great but I'm fine. My head is still clear - but that veil of fogginess didn't start immediately last time, so I'm not sure when and if that will return. I'm smarter this time in that I'm have no expectations to write the checks for the house-hold bills and try to work on a publishing a paper the weekend following chemotherapy. That was not a good decision last time.
I will say that my care at CCA is really special. When I say it takes a 'village' to treat a patient, I really mean it. Cyndi provides my pre-chemotherapy work-up, Dr. Stender approves my chemo, Dr. J watches me during the chemotherapy, Drs. Burdakin, Huben and Zakalik all maintain a watchful eye - each providing me with their cell phone numbers. I feel fortunate in my care.
I've worked everyday and not missed a beat but the price to pay is I'm tired all evening. I was quick to tears most of the first couple of weeks following the first chemotherapy. I could have a 'pity party' pretty darn quickly - usually when I was driving alone in the car. I use distraction a lot to not think about it. Even when I wrote above how I only have two more treatments remaining. It's not like I really think that's good - I think holy s**t, two more treatments, can I do it?!!! Any treatment after the first is harder because there is no naivete about it. I know what to expect and frankly that doesn't make it any easier. There is no 'pill' to take that reality away.
All is all I'm fine and so appreciate of all your support and prayers.
Love,
Veronica
Saturday, April 4, 2009
Update
Family and Friends,
I don't think you'll hear from me again for another couple of weeks as it looks like I'm over the hump with side effects from the chemotherapy. As I mentioned on Wednesday (post 5 days from first chemotherapy) my brain cleared and I started to feel normal. The neulasta injection caused a lot of bone pain and most nights I'm not sleeping but it is tolerable. Hair loss is due late next week, so I have a wig in waiting. I may write you about the hair loss - it depends on how tramautic it is.
I want to let you know that I had some really exciting news on April 1st. As most of you know Linda Ferris and I wrote two manuscripts in the mid to late 90's in regard to caring for cancer patients. One we self-published and one is now its in 10th revision. The former was called Pocket Full of Miracles. We never sold many so we've been giving them out to our patients at Cancer Care Associates and many times over the years people contacted me with positive comments about the book and asking for copies for friends. I thought a lot about it two summer's ago when Anne's friend Stephanie was bed side with her mother who was dying of breast cancer. Stephanie shared how she would sit by her mother and read the book. It still brings tears to me when I think about it. I thought then that if that little book could provide some comfort to people may be I should try to get it published again. We sent the book to 30 agents and publishing companies and one bought it. It was just released this week and can be found on amazon.com under the new title: Coping with Cancer: A Patient Pocket Book. I find it so ironic that the book should just now get published when I'm struggling with my own cancer. I guess God does work in mysterious ways.
I so appreciate your prayers and support.
Warmly,
Veronica
I don't think you'll hear from me again for another couple of weeks as it looks like I'm over the hump with side effects from the chemotherapy. As I mentioned on Wednesday (post 5 days from first chemotherapy) my brain cleared and I started to feel normal. The neulasta injection caused a lot of bone pain and most nights I'm not sleeping but it is tolerable. Hair loss is due late next week, so I have a wig in waiting. I may write you about the hair loss - it depends on how tramautic it is.
I want to let you know that I had some really exciting news on April 1st. As most of you know Linda Ferris and I wrote two manuscripts in the mid to late 90's in regard to caring for cancer patients. One we self-published and one is now its in 10th revision. The former was called Pocket Full of Miracles. We never sold many so we've been giving them out to our patients at Cancer Care Associates and many times over the years people contacted me with positive comments about the book and asking for copies for friends. I thought a lot about it two summer's ago when Anne's friend Stephanie was bed side with her mother who was dying of breast cancer. Stephanie shared how she would sit by her mother and read the book. It still brings tears to me when I think about it. I thought then that if that little book could provide some comfort to people may be I should try to get it published again. We sent the book to 30 agents and publishing companies and one bought it. It was just released this week and can be found on amazon.com under the new title: Coping with Cancer: A Patient Pocket Book. I find it so ironic that the book should just now get published when I'm struggling with my own cancer. I guess God does work in mysterious ways.
I so appreciate your prayers and support.
Warmly,
Veronica
Wednesday, April 1, 2009
Tuesday brain cleared....
Family and Friends,
My brain finally cleared on Tuesday (day 4 following chemotherapy). It was like a veil hanging over me so that I couldn't think well. I was most bothered by that. The nausea was like being pregnant with Brian (I had no nausea with Anne and Marc - just Brian), where nothing tasted good and things that I really, really enjoy like coffee aren't appealing. Despite the lack luster appetite, I ate so that I would have energy (or habit). My appetite returned last night for dinner and it's better this morning but not 100%.
The Neulasta subq injection was given on Monday morning. Neulasta will keep my white blood cell count appropriate to fight infections. Although they said it is thick and might hurt when given - I really didn't feel pain. The Neulasta causes bone pain and I do have pain in my chest. Last night I woke frequently and had to go to the bathroom; it was like all the liquids my body gathered over the past few days were finally leaving my body.
All in all I'm okay and I can work but I totally understand that I've received some major chemotherapy. No doubt about it.
Thanks for caring - and keep the prayers coming.
Veronica
My brain finally cleared on Tuesday (day 4 following chemotherapy). It was like a veil hanging over me so that I couldn't think well. I was most bothered by that. The nausea was like being pregnant with Brian (I had no nausea with Anne and Marc - just Brian), where nothing tasted good and things that I really, really enjoy like coffee aren't appealing. Despite the lack luster appetite, I ate so that I would have energy (or habit). My appetite returned last night for dinner and it's better this morning but not 100%.
The Neulasta subq injection was given on Monday morning. Neulasta will keep my white blood cell count appropriate to fight infections. Although they said it is thick and might hurt when given - I really didn't feel pain. The Neulasta causes bone pain and I do have pain in my chest. Last night I woke frequently and had to go to the bathroom; it was like all the liquids my body gathered over the past few days were finally leaving my body.
All in all I'm okay and I can work but I totally understand that I've received some major chemotherapy. No doubt about it.
Thanks for caring - and keep the prayers coming.
Veronica
Saturday, March 28, 2009
First Chemotherapy is Done
Hello Family and Friends,
Just want to let you know that I completed my first treatment of chemotherapy and all went well. I couldn't sleep much the night before the treatment because they pre-medicated me with 12 mg of steroids, so that I wouldn't have an allergic reaction to the one chemo drug called Taxotere. Taxotere is like another chemo called Taxol and is derived from the Yew plant. That plant can cause major allergic reactions. I was in the chemo chair about four hours, where they started with checking my liver enzymes which were completely down. All the hoopla about the elevated liver enzymes must have been the reaction from the anesthesia, but with me it took nearly a month for them the come back down to normal. My blood count was fine (cbc, hemaglobin, etc) so I was good to go for chemo. they started with hydration, more steroids and then an antinausea medication. Next was one and half hours of Taxotere, followed by another hour or so of Cytoxan. I had three needle sticks to get it going and I have to be careful not to use my left arm where I had lymph nodes removed in the arm pit - drainage might not be 100% and women get lymphadema. Thus, my right arm looks like a I'm on drugs - which I'm but they're the legal ones.
My wig came in and I have a fitting on Tuesday. I hate that part more than most anything. My hair will fall out in about 14 days. All of it. David shaved his head TOTALLY. He is bald. He said he wanted to do it to support me, so now soon we will both be laying in bed with no hair! It was so supportive I cried.
I feel okay this morning. I woke early and went down to the exercise room to jog. I was able to jog 2:24 miles in 30 minutes. I didn't push my self but I have to say it wasn't easy. They weigh me at the office now at least once every couple of weeks, so I know my weight which is 111 and I'm worried about gaining. They say that women often gain on this protocol because of the steroids increasing your appetite and not being able to exercise because blood counts dip and fatigue sets in.
I completed my usual breakfast of two eggs, fruit and coffee and so far its all staying down. I have two types of antinausea pills to take with the first sign of nausea, which apparently is common. Other than my stomach is bloated, I seem to be okay.
I'm working on a paper for publication today at home and just plan to stay home all day. David thinks I'll have a steroid 'crash' tomorrow when I'll sleep most of the day. I'm really happy I planned the chemo on Friday so I have two full days to recoup.
That's the scoop.
Let me know how you all are doing.
Love,
Veronica
Just want to let you know that I completed my first treatment of chemotherapy and all went well. I couldn't sleep much the night before the treatment because they pre-medicated me with 12 mg of steroids, so that I wouldn't have an allergic reaction to the one chemo drug called Taxotere. Taxotere is like another chemo called Taxol and is derived from the Yew plant. That plant can cause major allergic reactions. I was in the chemo chair about four hours, where they started with checking my liver enzymes which were completely down. All the hoopla about the elevated liver enzymes must have been the reaction from the anesthesia, but with me it took nearly a month for them the come back down to normal. My blood count was fine (cbc, hemaglobin, etc) so I was good to go for chemo. they started with hydration, more steroids and then an antinausea medication. Next was one and half hours of Taxotere, followed by another hour or so of Cytoxan. I had three needle sticks to get it going and I have to be careful not to use my left arm where I had lymph nodes removed in the arm pit - drainage might not be 100% and women get lymphadema. Thus, my right arm looks like a I'm on drugs - which I'm but they're the legal ones.
My wig came in and I have a fitting on Tuesday. I hate that part more than most anything. My hair will fall out in about 14 days. All of it. David shaved his head TOTALLY. He is bald. He said he wanted to do it to support me, so now soon we will both be laying in bed with no hair! It was so supportive I cried.
I feel okay this morning. I woke early and went down to the exercise room to jog. I was able to jog 2:24 miles in 30 minutes. I didn't push my self but I have to say it wasn't easy. They weigh me at the office now at least once every couple of weeks, so I know my weight which is 111 and I'm worried about gaining. They say that women often gain on this protocol because of the steroids increasing your appetite and not being able to exercise because blood counts dip and fatigue sets in.
I completed my usual breakfast of two eggs, fruit and coffee and so far its all staying down. I have two types of antinausea pills to take with the first sign of nausea, which apparently is common. Other than my stomach is bloated, I seem to be okay.
I'm working on a paper for publication today at home and just plan to stay home all day. David thinks I'll have a steroid 'crash' tomorrow when I'll sleep most of the day. I'm really happy I planned the chemo on Friday so I have two full days to recoup.
That's the scoop.
Let me know how you all are doing.
Love,
Veronica
Monday, March 23, 2009
Chemotherapy bag
My friend Sandy gave me a 'chemo bag' to take along for each chemotherapy. Here are the contents - it's perfect. I'm going to ask Cancer Care Associates to create a similar bag for our patients just starting chemotherapy.
Inside bag:
One fleece throw blanket
Water bottle
Tea cup
Tea (herbal, Chartreuse A Journey to Wellness)
Book - Language of letting go by melody beattie
Feet treats (1 pair cozy lounge socks) - purple or pink
journal writing book called 'thoughts' by hallmark
pen
Aveda hand creme (1.4 fl oz)
Book mark
Fish mints, intense cinnamon fish shaped mints
Godiva solid dark chocolate bar 1.5 oz
O' magazine
Wednesday, March 18, 2009
Dear Family and Friends,
I just want to let you know that the OctotypeDX test results indicated that my chance of recurrence of the breast cancer was slightly higher than originally thought, therefore I will start chemotherapy on Friday of this week. I'll have four infusions (one every three weeks). The program is crappy in that I'll lose my hair but I should be able to work and hopefully not get 'chemo brain', so that I can't write and 'think'.
I'm bummed but doing okay. I'll start chemotherapy on Friday and try to get it over with as quickly as possible.
On a positive note, Marc was accepted to the School of Music at the University of Iowa and will get a Masters in Conducting. As part of the program he will have a graduate assistant position and teach, including working with the marching band. How great is that?!!! Dima easily found a post-doctorate position, so they will finally live together after five years of marriage.
Brian and Yanni's baby is doing well and we are enjoying her too.
I'm sorry to share the bad news about the need for chemotherapy but I should be back to good health in a few months.
Love,
Veronica
I just want to let you know that the OctotypeDX test results indicated that my chance of recurrence of the breast cancer was slightly higher than originally thought, therefore I will start chemotherapy on Friday of this week. I'll have four infusions (one every three weeks). The program is crappy in that I'll lose my hair but I should be able to work and hopefully not get 'chemo brain', so that I can't write and 'think'.
I'm bummed but doing okay. I'll start chemotherapy on Friday and try to get it over with as quickly as possible.
On a positive note, Marc was accepted to the School of Music at the University of Iowa and will get a Masters in Conducting. As part of the program he will have a graduate assistant position and teach, including working with the marching band. How great is that?!!! Dima easily found a post-doctorate position, so they will finally live together after five years of marriage.
Brian and Yanni's baby is doing well and we are enjoying her too.
I'm sorry to share the bad news about the need for chemotherapy but I should be back to good health in a few months.
Love,
Veronica
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