Things have gone from bad to worse. I've been hesitant to write an update but enough people have called or emailed that I thought I should. The last two days have been horrible for Nysh. She feels beyond awful and can't get out of bed. Today has been even worse than yesterday and we were thinking maybe she would have turned the corner. Symptoms are severe flu-like pain, nausea, and her abdomen is excruciatingly painful.
She and Paul will call the oncologist in the morning to talk about things. Nysh is not feeling like she can do another round of the IP chemo. Especially since the side effects are cumulative and get worse with each cycle. At the moment I don't know what she'll do on Monday and I'm not sure about the schedule, I know some of you are trying to plan visits.
I'll update as I know more.
As always, THANKS for the love!
Maggie
Thursday, January 31, 2008
Tuesday, January 29, 2008
At Home
Hi all,
Nysh went home this morning and is happy to be resting in her own bed. The side effects have kicked in. She feels like she has a REALLY bad flu or was "hit by a mack truck." A few days in bed and hopefully nothing else to report this week. She goes back in on Monday to the oncologist's office for 2-3 hours of IP taxol.
That's all for now.
Thanks for the love!!!
M.
Nysh went home this morning and is happy to be resting in her own bed. The side effects have kicked in. She feels like she has a REALLY bad flu or was "hit by a mack truck." A few days in bed and hopefully nothing else to report this week. She goes back in on Monday to the oncologist's office for 2-3 hours of IP taxol.
That's all for now.
Thanks for the love!!!
M.
Monday, January 28, 2008
Update
Hello,
She is still doing really well. She's feeling good and the nurses have been fabulous. Her doc came in this evening and told her not to get too cocky because the side effects will kick in more in the next couple days. She is just relieved to have gotten through these last two days and her anxiety is so much better. Her vitals are perfect and the plan is still to go home tomorrow.
Love ya'll,
Maggie
She is still doing really well. She's feeling good and the nurses have been fabulous. Her doc came in this evening and told her not to get too cocky because the side effects will kick in more in the next couple days. She is just relieved to have gotten through these last two days and her anxiety is so much better. Her vitals are perfect and the plan is still to go home tomorrow.
Love ya'll,
Maggie
The latest
Hi,
Well, so far so good. All of the IV taxol went in without any complications. They pushed the IP cystplatin this morning, plus about 4 gallons of saline. She's having some abdominal cramping and a little bit of nausea but they're managing with meds really well. Her appetite and spirits are good! She's scheduled to go home sometime tomorrow.
Love,
Maggie
Well, so far so good. All of the IV taxol went in without any complications. They pushed the IP cystplatin this morning, plus about 4 gallons of saline. She's having some abdominal cramping and a little bit of nausea but they're managing with meds really well. Her appetite and spirits are good! She's scheduled to go home sometime tomorrow.
Love,
Maggie
Saturday, January 26, 2008
Checking in
Hi,
Just wanted to let everyone know that the procedure this morning to put in the IV line went fine, no problems. Nysh was in really good spirits today. She's ready to get the inevitable started.
Love ya'll,
M.
Just wanted to let everyone know that the procedure this morning to put in the IV line went fine, no problems. Nysh was in really good spirits today. She's ready to get the inevitable started.
Love ya'll,
M.
Friday, January 25, 2008
The New Hair
Nysh, Ben and I went shopping today for Nysh's new wig. No relation to the haircut I gave her a couple of days ago. :)
Pretty cute, check her out!
Love,
Maggie
Pretty cute, check her out!
Love,
Maggie
The Plan
Hi,
I wanted to give everyone the schedule and an information update.
Tomorrow morning, Saturday, Nysh will be admitted to Penrose Hosptial here in Colorado Springs. They'll start a central IV line which will be permanent until she is finished with the chemotherapy.
Day 1-Sunday morning they'll start the IV chemo., taxol, which will run slowly for 24hours.
Day 2-Monday she will have the IP chemo., cystplatin, for 2-3 hours, they'll monitor her, help manage the side effects and she'll go home sometime on Tuesday.
Day 8-On Monday, February 4th she will go in to the oncologist's office for 2-3 hours of more IP chemo., taxol, followed by bloodwork.
After this cycle she will have 21 days off and then she will repeat everything for 5 more cycles, a total of 6.
If anyone has any more questions feel free to email me, manshutz@gmail.com or call, 719.328.1148. Please don't hesitate to contact me this coming week so we can try to give Nysh and Paul's phones a little rest. Also, Nysh has asked that people not come by the hospital for this first cycle, she wants to wait and see how things go.
Thank you all so much for your continued support, love, thoughts, prayers, emails, calls, visits and food! We appreciate it all very much!
Thank you and love,
Maggie
I wanted to give everyone the schedule and an information update.
Tomorrow morning, Saturday, Nysh will be admitted to Penrose Hosptial here in Colorado Springs. They'll start a central IV line which will be permanent until she is finished with the chemotherapy.
Day 1-Sunday morning they'll start the IV chemo., taxol, which will run slowly for 24hours.
Day 2-Monday she will have the IP chemo., cystplatin, for 2-3 hours, they'll monitor her, help manage the side effects and she'll go home sometime on Tuesday.
Day 8-On Monday, February 4th she will go in to the oncologist's office for 2-3 hours of more IP chemo., taxol, followed by bloodwork.
After this cycle she will have 21 days off and then she will repeat everything for 5 more cycles, a total of 6.
If anyone has any more questions feel free to email me, manshutz@gmail.com or call, 719.328.1148. Please don't hesitate to contact me this coming week so we can try to give Nysh and Paul's phones a little rest. Also, Nysh has asked that people not come by the hospital for this first cycle, she wants to wait and see how things go.
Thank you all so much for your continued support, love, thoughts, prayers, emails, calls, visits and food! We appreciate it all very much!
Thank you and love,
Maggie
Tuesday, January 22, 2008
Update
Hi everyone,
Nysh and Paul have been doing a lot of research and have spoken with several oncologists regarding the best protocol for Nysh's treatment. They have made a decision to do the combination IV with the IP (intraperitoneal) chemo. She will treat with the oncologist here in the Springs starting next week.
I'll email when there is more.
Thanks,
Maggie
Nysh and Paul have been doing a lot of research and have spoken with several oncologists regarding the best protocol for Nysh's treatment. They have made a decision to do the combination IV with the IP (intraperitoneal) chemo. She will treat with the oncologist here in the Springs starting next week.
I'll email when there is more.
Thanks,
Maggie
Sunday, January 20, 2008
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Tuesday, January 15, 2008
From Nyshie
Primarily, I want to thank each and every one of you for the cards, calls, love, support and kindness I have been surrounded with every day of the last three plus weeks. It has given me the courage to face this more than you’ll ever know.
Finally, we’ve had some positive news. My IVP Monday morning was normal so the doctor removed the catheter Monday afternoon. After a few struggles, my plumbing seems to be working in fine order. Paul and I are exploring which chemotherapy approach we’re going to choose with various physicians around the country. Hopefully, I’ll be able to start in a couple of weeks. It just depends on how my recovery goes (barring any more complications).
Thanks again for how often you’ve touched my heart.
Love,
Nyshie
Finally, we’ve had some positive news. My IVP Monday morning was normal so the doctor removed the catheter Monday afternoon. After a few struggles, my plumbing seems to be working in fine order. Paul and I are exploring which chemotherapy approach we’re going to choose with various physicians around the country. Hopefully, I’ll be able to start in a couple of weeks. It just depends on how my recovery goes (barring any more complications).
Thanks again for how often you’ve touched my heart.
Love,
Nyshie
Sunday, January 13, 2008
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Friday, January 11, 2008
Coming Home
Hi,
I don't really have any specific details but Nysh is coming home this evening. Apparently, all of the tests are normal and no more procedures are needed!
I'll post when there are more details.
Love,
M.
I don't really have any specific details but Nysh is coming home this evening. Apparently, all of the tests are normal and no more procedures are needed!
I'll post when there are more details.
Love,
M.
Thursday, January 10, 2008
Update
Hi,
Well, after laying in the waiting room for 2-3 hours they finally got Nysh into a room. They started an IV, gave her some pain meds and inserted the drain. So, she is feeling a little bit better and they are just waiting for the doc to come in. The next step depends on what exactly is coming out of the drain.
I'll do another update this evening when I find out more.
Thanks!
Love,
M.
P.S. A sweet picture from Saturday night!
Well, after laying in the waiting room for 2-3 hours they finally got Nysh into a room. They started an IV, gave her some pain meds and inserted the drain. So, she is feeling a little bit better and they are just waiting for the doc to come in. The next step depends on what exactly is coming out of the drain.
I'll do another update this evening when I find out more.
Thanks!
Love,
M.
P.S. A sweet picture from Saturday night!
Wednesday, January 9, 2008
Well... bummer!
Hello,
Nysh started feeling pretty awful on Monday and it has continued to get much worse. So, the doc ordered another CT scan which she had done a couple of hours ago. It showed a hematoma or an abscess on her ureter. She and Paul will drive up to Denver tomorrow morning, they will meet with the doc and then she will be admitted back to Rose Hospital. The mass will be drained and she will be started on IV antibiotics immediately, due to the dangerously high risk of infection. She will probably be in the hospital for two or three days.
I’ll update when I know more.
Thanks,
Maggie
Nysh started feeling pretty awful on Monday and it has continued to get much worse. So, the doc ordered another CT scan which she had done a couple of hours ago. It showed a hematoma or an abscess on her ureter. She and Paul will drive up to Denver tomorrow morning, they will meet with the doc and then she will be admitted back to Rose Hospital. The mass will be drained and she will be started on IV antibiotics immediately, due to the dangerously high risk of infection. She will probably be in the hospital for two or three days.
I’ll update when I know more.
Thanks,
Maggie
Sunday, January 6, 2008
Festivus
Hello,
We finally had our holiday celebration last night at Nysh & Paul's. We had a wonderful time, and a wonderful meal! Beth & Danny took complete charge of the meal, it was fabulous!!! Ben & I got some wigs to help make Nyshie's transition to hairlessness a little bit lighter. Check out the pictures!
Love,
Maggie
Tina Turner
Donna Sue & Paul the Pirate w/ Vivian
Ben the Pirate (looking quite natural)
Princess Leia Beth & Danny Shag
Matt Dirt
Mullet Chad & WT Maggie
Fletch
We finally had our holiday celebration last night at Nysh & Paul's. We had a wonderful time, and a wonderful meal! Beth & Danny took complete charge of the meal, it was fabulous!!! Ben & I got some wigs to help make Nyshie's transition to hairlessness a little bit lighter. Check out the pictures!
Love,
Maggie
Tina Turner
Donna Sue & Paul the Pirate w/ Vivian
Ben the Pirate (looking quite natural)
Princess Leia Beth & Danny Shag
Matt Dirt
Mullet Chad & WT Maggie
Fletch
Friday, January 4, 2008
Update from Paul
Dear Family and Friends,
I thought it about time that I say a few words to everyone. You can’t imagine how many cards and letters have come to Nyshie. I thank each and every one of you and it is humbling to see how much she is loved by so many people. If love, prayers and “good vibes” are healing then she will undoubtedly be the healthiest person we know quite soon.
On the medical front, we went to John Burke, M.D., the oncologist in Colorado Springs yesterday. We really like him and feel assured of his skill and dedication. He said we have three options. The first is to do intravenous (IV) chemotherapy every three weeks for six months with Carboplatin and Paclitaxel. The second option is to do the IV chemo but add intraperitoneal chemotherapy (IP) which is delivering the chemo directly into the abdominal cavity. The addition does seem to increase the likelihood of a positive outcome but the IP treatment is very debilitating, requires two to three days in the hospital each time and also has the possibility of complications and infection at the delivery site. Only about 40 percent are able to get through the entire six months. The third option is to volunteer for a clinical trial of having the IV chemotherapy with the addition of Avastin which has proved very beneficial to other cancers such as breast, lung, liver, colon and rectal. She would be in one of three treatment groups— IV and a placebo; IV and Avastin for six months; or IV and Avastin for 12 months. This is a blind study so neither us nor the Dr. would know which group we are in. The oncologist said he would volunteer for the clinical trials study in a heartbeat and we tend to agree. The IP chemo just sounds too difficult, painful, and debilitating to justify the amount of positive gain. We will make our final decision after talking with the oncologist who did the surgery next Thursday.
She is also scheduled to talk to a Naturopath who specializes in diet, herbal supplements and vitamins as an adjunct to chemotherapy. Naturopaths have five years of training post college and are quite knowledgeable though their treatments are generally unproven scientifically.
Currently, she still has the Foley urinary catheter. The urologist said he wants to be ultraconservative and make sure the ureter has healed before removing it which should be in about ten days if the CT Scan looks good.
I also want to thank all of you for inquiring how I am doing. My standard response is that I am hanging in there which is generally true but in reality this whole ordeal still seems unreal, horrible, sad, frightening, unfair and a whole host of other emotions. Most often I don’t really know how I am doing. I am just putting one step in front of the other and trying to take it one day at a time, be supportive to Nysh, and make some kind of sense of it all.
I am also starting to schedule work again as the bills do have to get paid and I am hopeful that the distraction will be good for me as well.
Well that is about it for today. We are fortunate to have such a wonderful relationship and are thankful everyday for each other, our friends and our family as we couldn’t get through this without it all. Love to everyone.
Paul
I thought it about time that I say a few words to everyone. You can’t imagine how many cards and letters have come to Nyshie. I thank each and every one of you and it is humbling to see how much she is loved by so many people. If love, prayers and “good vibes” are healing then she will undoubtedly be the healthiest person we know quite soon.
On the medical front, we went to John Burke, M.D., the oncologist in Colorado Springs yesterday. We really like him and feel assured of his skill and dedication. He said we have three options. The first is to do intravenous (IV) chemotherapy every three weeks for six months with Carboplatin and Paclitaxel. The second option is to do the IV chemo but add intraperitoneal chemotherapy (IP) which is delivering the chemo directly into the abdominal cavity. The addition does seem to increase the likelihood of a positive outcome but the IP treatment is very debilitating, requires two to three days in the hospital each time and also has the possibility of complications and infection at the delivery site. Only about 40 percent are able to get through the entire six months. The third option is to volunteer for a clinical trial of having the IV chemotherapy with the addition of Avastin which has proved very beneficial to other cancers such as breast, lung, liver, colon and rectal. She would be in one of three treatment groups— IV and a placebo; IV and Avastin for six months; or IV and Avastin for 12 months. This is a blind study so neither us nor the Dr. would know which group we are in. The oncologist said he would volunteer for the clinical trials study in a heartbeat and we tend to agree. The IP chemo just sounds too difficult, painful, and debilitating to justify the amount of positive gain. We will make our final decision after talking with the oncologist who did the surgery next Thursday.
She is also scheduled to talk to a Naturopath who specializes in diet, herbal supplements and vitamins as an adjunct to chemotherapy. Naturopaths have five years of training post college and are quite knowledgeable though their treatments are generally unproven scientifically.
Currently, she still has the Foley urinary catheter. The urologist said he wants to be ultraconservative and make sure the ureter has healed before removing it which should be in about ten days if the CT Scan looks good.
I also want to thank all of you for inquiring how I am doing. My standard response is that I am hanging in there which is generally true but in reality this whole ordeal still seems unreal, horrible, sad, frightening, unfair and a whole host of other emotions. Most often I don’t really know how I am doing. I am just putting one step in front of the other and trying to take it one day at a time, be supportive to Nysh, and make some kind of sense of it all.
I am also starting to schedule work again as the bills do have to get paid and I am hopeful that the distraction will be good for me as well.
Well that is about it for today. We are fortunate to have such a wonderful relationship and are thankful everyday for each other, our friends and our family as we couldn’t get through this without it all. Love to everyone.
Paul
Wednesday, January 2, 2008
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