Wednesday, June 6, 2012
Four down, Two to Go......
Well, here we go again! Treatment number 4 is about to begin. It's 6 days behind due to Misho's bloodwork being low. (Guest Blogger Jim is posting today) Thankfully the 6 day wait, a shot of nupegen and lots of rest did the trick. Her blood work is better this morning than it was last time so I am hoping that her post treatment days will be better than last time. ......She has her pre-meds hanging now and she is driftng off to sleep as I type....
She woke up this morning and was upset, she did'nt sleep well and her mind was going places it should'nt. It does that sometimes, seems to creep up and come out of nowhere. We asked for a window seat today, it's away from the nurse's station and bathed in sunlight, there is a fountain outside and lots of blooming plants. The cancer center is slow today, I'm thankful for that.
Misho went to support group last night. She came home looking so much better. I am so proud of her for going. She knows how important it is not to keep things inside, how free it feels to speak them and then let them go. I think it must be so hard to keep things bottled up, to not think of or share your cares and concerns with someone.
10:03 am, chemo starting, she is awake watching "Ellen"......soon asleep......very tired today.
11:20 am, asleep again.
12:00 pm, restess, walked around. lunch and some friends visiting from work.
12:30 pm, asleep again.
1:00 pm, first 500cc bag is done.
1:45 pm, second med done.
2:00 pm, on our way home.
66.66% of her Chemo treatments are behind us now!
2:45 pm, asleep on the couch.......peacefully.
It feels good to "turn the corner" with the treatments. It also feels like it will never end. It gets "old" after awhile.....bloodwork,appointments,chemo......etc.... etc... each day brings us closer to the end and that does feel good....
I have to say sometimes I can't believe this is happening to us.. and to me. Having gone thru this before, makes my journey now harder and I feel very scared at times. Today I also felt strong for me and especially for Misho. I felt that we are slowly getting thru this. It is a very difficult place to be, but having each other is comforting.
Jim
Misho said some of you are having difficulty posting comments. I used "Internet Explorer" to find Mish's Blog and did not any problem commenting. We really like when you comment, it makes us feel more connected and understood.
Thanks,
Jim
Sunday, June 3, 2012
Hi, I know it has been a While
Sorry that it has been so long. We have had a lot going on around here lately. Devin Graduated from High School this week. That has been fun, but also a bit stressful. We had company and did a few meals here at the house. I was not all that much help, but I tried.
Jim and I went to the beach last weekend. It was supposed to be a relaxing getaway, some fun for the two of us - so that we could forget - we could not. I know that it was because we did so much on Friday - driving, shopping, eating out - but Saturday I was without energy - completely. I really couldn't do anything. We tried to walk on the beach and I had to take a break - we didn't walk that far - I was so tired. I felt the worst I have felt during this whole thing. I didn't like it at all. I just wanted to have fun and I was tired. We came home on Monday - it took seven hours - it usually takes four.
Tuesday was Baccalaureate for Devin's Graduation. Her Aunt and Uncle had come to visit and see Devin graduate. We had a nice dinner here and then went to the service. There were 700 people there. I tried, but I was really tired. I hate that.
I went to the Dr. on Wednesday. Blood work and then an appointment with doctor. Yet again I was unprepared for what was to come. I knew that I had not been feeling as well as I should, but I thought that I would just try my blood work again on Monday. My counts were much lower then they had ever been - they were in the toilet! I should probably not have gone to Baccalaureate - or at least should have worn a mask. Now I need a shot of Neupogen - to boost my bone marrow - that hurt! There is nothing to do about the platelets. They just have to have time. They need to be 100 - mine were 49 - a long way to go. Next is a whirl of new appointments - my Dr is going on leave for six weeks - so now I have to see someone else next time. I was again overwhelmed. Everything that I had planed on over the next few weeks is all up in the air now.
Graduation was Wednesday night. We had sandwiches here at the house. I tried - but I was tired and overwhelmed on lots of levels. I just didn't know which way to turn. Oh, by the way, Jim's Mom fell and went to the hospital on Tuesday at six in the morning, just to add to the fun. She is OK, but still one more thing on our plate this week.
I am so tired - physically and mentally. I have no energy - I want to do stuff, but there is just not enough energy to be had. I am so tired of this whole thing. I know that I am half way, but it doesn't feel like it - it feels like forever. It feels like it will never end. I want to feel good again - like my self again - it feels like that will never happen. I know that there are people who have it way worse than I do. I try to remember that, but it is hard. This whole thing is hard.
Jim and I went to the beach last weekend. It was supposed to be a relaxing getaway, some fun for the two of us - so that we could forget - we could not. I know that it was because we did so much on Friday - driving, shopping, eating out - but Saturday I was without energy - completely. I really couldn't do anything. We tried to walk on the beach and I had to take a break - we didn't walk that far - I was so tired. I felt the worst I have felt during this whole thing. I didn't like it at all. I just wanted to have fun and I was tired. We came home on Monday - it took seven hours - it usually takes four.
Tuesday was Baccalaureate for Devin's Graduation. Her Aunt and Uncle had come to visit and see Devin graduate. We had a nice dinner here and then went to the service. There were 700 people there. I tried, but I was really tired. I hate that.
I went to the Dr. on Wednesday. Blood work and then an appointment with doctor. Yet again I was unprepared for what was to come. I knew that I had not been feeling as well as I should, but I thought that I would just try my blood work again on Monday. My counts were much lower then they had ever been - they were in the toilet! I should probably not have gone to Baccalaureate - or at least should have worn a mask. Now I need a shot of Neupogen - to boost my bone marrow - that hurt! There is nothing to do about the platelets. They just have to have time. They need to be 100 - mine were 49 - a long way to go. Next is a whirl of new appointments - my Dr is going on leave for six weeks - so now I have to see someone else next time. I was again overwhelmed. Everything that I had planed on over the next few weeks is all up in the air now.
Graduation was Wednesday night. We had sandwiches here at the house. I tried - but I was tired and overwhelmed on lots of levels. I just didn't know which way to turn. Oh, by the way, Jim's Mom fell and went to the hospital on Tuesday at six in the morning, just to add to the fun. She is OK, but still one more thing on our plate this week.
I am so tired - physically and mentally. I have no energy - I want to do stuff, but there is just not enough energy to be had. I am so tired of this whole thing. I know that I am half way, but it doesn't feel like it - it feels like forever. It feels like it will never end. I want to feel good again - like my self again - it feels like that will never happen. I know that there are people who have it way worse than I do. I try to remember that, but it is hard. This whole thing is hard.
Wednesday, May 16, 2012
Three Down Three to Go
Well I'm half way. It doesn't feel like it. It feels like I still have a long way.
This time was hard because when I went to the Dr. before my treatment, my platelets and white cells were down. I had thought that I had come back so well from my second treatment. I felt so good. I was shocked. They talked about pushing me back by a few days. I know that doesn't sound like much, but I was holding on to July 12th pretty hard. I want to be done! If they push it back - when will the end be? It will be unknown and we all know how much I like the unknown!
I am not coming back as well this time either. I'm more tired and not much energy. I am not sleeping very well either. I did OK on Saturday, got around and did some laundry and helped cook, but I paid for it on Sunday. I really didn't get off the couch much at all. It is so hard to go up and down like that. I want to go up and never down, but I know that I can't do that - but I want to. Monday and Tuesday were just OK. Did a little and then rested. Had trouble pooping too. I know that it is not nice to talk about, but there it is - Chemo makes you constipated! I didn't poop for four days! I pooped this morning so I am feeling better, but really four days- Yuck!
I am tired of this whole thing. I want it to be over. I know that it isn't, but I really want it to be. Devin's Graduation is coming up and there is so much going on and I want to be normal - like nothing is wrong. I know that my bald head is kind of hard to miss, but I wish that I could just blend in - but I can't. I have Dr. appointments right before graduation and treatment right after. It just seems like a lot and I am tired of it. I just want to be well again - strong again - normal again - but I'm not.
This time was hard because when I went to the Dr. before my treatment, my platelets and white cells were down. I had thought that I had come back so well from my second treatment. I felt so good. I was shocked. They talked about pushing me back by a few days. I know that doesn't sound like much, but I was holding on to July 12th pretty hard. I want to be done! If they push it back - when will the end be? It will be unknown and we all know how much I like the unknown!
I am not coming back as well this time either. I'm more tired and not much energy. I am not sleeping very well either. I did OK on Saturday, got around and did some laundry and helped cook, but I paid for it on Sunday. I really didn't get off the couch much at all. It is so hard to go up and down like that. I want to go up and never down, but I know that I can't do that - but I want to. Monday and Tuesday were just OK. Did a little and then rested. Had trouble pooping too. I know that it is not nice to talk about, but there it is - Chemo makes you constipated! I didn't poop for four days! I pooped this morning so I am feeling better, but really four days- Yuck!
I am tired of this whole thing. I want it to be over. I know that it isn't, but I really want it to be. Devin's Graduation is coming up and there is so much going on and I want to be normal - like nothing is wrong. I know that my bald head is kind of hard to miss, but I wish that I could just blend in - but I can't. I have Dr. appointments right before graduation and treatment right after. It just seems like a lot and I am tired of it. I just want to be well again - strong again - normal again - but I'm not.
Friday, May 11, 2012
Half Way!
Hello! I am happy to report that my Guest Blogger status has been renewed!!! Yes it is Jim again bringing you up to date on Misho's 3rd chemo treatmeant......! Actually, we were not sure if it would happen today.....Let me explain........
Misho's platelets and white blood cell count were low on Monday. This is normal but psychologically it made for an unsettled week. We have it set in our hearts that all will go as scheduled, so when our plans get changed it takes a lot of energy to be patient. More energy than any of you realize, because we want this to be done.
Last night was rough, not much sleep for both of us and when it came it was unsettled sleep....I woke up at 5:30 am....thinking as I rolled over that all I had to do was get up and go to work.(I wish that is all I had to worry about)!...then the heavy weight of another Chemo treatment and all that it involves crept into my mind.............Wow, really? another one.... This is not what I want to do.......Can I please just go to work and forget what is going on....Can I please just go back to my "Bubble" and only think of Me.....NO! You can't, you have to be there for her..........., OK I'm getting up now.....................! and I was SAD.....Sad that the weight of worry, treatments and the unknown were slapping us in the face again......
Some of you who read this blog have gone through similar trials, some of you have gone through even more difficult events in your life that lead you to a place of connection with us. Those of you who can completely connect know that it is so very, very difficult to have to watch the love of your life go through with the reality of Cancer and the: treatments, fears, worries, and above all the unknown possibility of what may be................
I got up and laid on the couch with the dog, watched TV and fell asleep for 20 minutes....it felt so good!
I got Misho up at 6:30am, made us breakfast, packed our bag---books,phones,I Pad, Misho's stuffed animal (Ralph the kitty) and of course her hand stiched chemo blanket.....
She put the Emla cream on her Port to numb the site for the "stick" and we left the house at 7:30 am.
We pulled in and Valet parked at 7:45 am, signed in and went to have her Port-a Cath accessed.
The needle is huge! The "stick" ( I hold her hand tight, and squeeze it hard when the needle goes in) didn't work at first, we both looked at each other----Oh Boy!! What Now?..... then there was a blood return... (YEA! the Port still works!) The nurse pulled two vials of blood and now we had to wait to see if her platelets and white count would allow us to have a treatment today. We waited for two hours......!
We waited until 9:40 am. The feelings of uncertainty and the sad, blank, scared faces in the waiting room are very hard to take sometimes. Let me temper that with the wonderful care and concern that is given by the staff at the hospital, they make you feel welcome and above all else----understood.....!
Good News!! Her platelets were 101,000.
The cutoff is 100,000......Here we go........!!!!!
We got to pick our chair today, it is close to the bathroom and away from the nurses station so hopefully it will be more quite, ( turned out it was louder and busy but we are ok with that)
9:50 Benadryl and Pepsid, 10:10 Pre med IV, and finally at 10:45----the chemo......
She is very restless this time, her legs are twitching and she just can't find the right spot to sit, some Ativan and four trips to the bathroom later, she is sleeping in her chair.....it's Noon.
Up at 12:30 eating a sandwich, much calmer now.
2:00 pm- the first 500cc IV is almost done. She has been more peaceful for the last hour or so, drifting in and out of sleep.
2:15 pm- the second IV starts and runs for only 30 minutes.....thankfully we are almost done.
2:50 pm-the port needle is flushed and pulled out (not too painful) .
3:05 pm- In the truck on our way home. 50% DONE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I wanted to tell you how proud I am of Misho. She is so strong, even though she would disagree. I have seeen her become more aware of each moment as it comes ( it is still a struggle sometimes). I have also seen her grow in her appreciation of all that life is. That is really a beautiful place to be, a place alot of us never get to. Blogging has given her a place to be open and honest with her feelings. She joined a support group this week, when she came home it was as if the fear and uncertainty melted off of her. I know that being in the company of others that have gone through similar life moments is very healing. Being with people that understand is so very comforting.
Each day holds victory for us, each day is also difficult for many reasons.
Thankfully we have all of you: thinking, reading and praying for us.......Jim
Misho's platelets and white blood cell count were low on Monday. This is normal but psychologically it made for an unsettled week. We have it set in our hearts that all will go as scheduled, so when our plans get changed it takes a lot of energy to be patient. More energy than any of you realize, because we want this to be done.
Last night was rough, not much sleep for both of us and when it came it was unsettled sleep....I woke up at 5:30 am....thinking as I rolled over that all I had to do was get up and go to work.(I wish that is all I had to worry about)!...then the heavy weight of another Chemo treatment and all that it involves crept into my mind.............Wow, really? another one.... This is not what I want to do.......Can I please just go to work and forget what is going on....Can I please just go back to my "Bubble" and only think of Me.....NO! You can't, you have to be there for her..........., OK I'm getting up now.....................! and I was SAD.....Sad that the weight of worry, treatments and the unknown were slapping us in the face again......
Some of you who read this blog have gone through similar trials, some of you have gone through even more difficult events in your life that lead you to a place of connection with us. Those of you who can completely connect know that it is so very, very difficult to have to watch the love of your life go through with the reality of Cancer and the: treatments, fears, worries, and above all the unknown possibility of what may be................
I got up and laid on the couch with the dog, watched TV and fell asleep for 20 minutes....it felt so good!
I got Misho up at 6:30am, made us breakfast, packed our bag---books,phones,I Pad, Misho's stuffed animal (Ralph the kitty) and of course her hand stiched chemo blanket.....
She put the Emla cream on her Port to numb the site for the "stick" and we left the house at 7:30 am.
We pulled in and Valet parked at 7:45 am, signed in and went to have her Port-a Cath accessed.
The needle is huge! The "stick" ( I hold her hand tight, and squeeze it hard when the needle goes in) didn't work at first, we both looked at each other----Oh Boy!! What Now?..... then there was a blood return... (YEA! the Port still works!) The nurse pulled two vials of blood and now we had to wait to see if her platelets and white count would allow us to have a treatment today. We waited for two hours......!
We waited until 9:40 am. The feelings of uncertainty and the sad, blank, scared faces in the waiting room are very hard to take sometimes. Let me temper that with the wonderful care and concern that is given by the staff at the hospital, they make you feel welcome and above all else----understood.....!
Good News!! Her platelets were 101,000.
The cutoff is 100,000......Here we go........!!!!!
We got to pick our chair today, it is close to the bathroom and away from the nurses station so hopefully it will be more quite, ( turned out it was louder and busy but we are ok with that)
9:50 Benadryl and Pepsid, 10:10 Pre med IV, and finally at 10:45----the chemo......
She is very restless this time, her legs are twitching and she just can't find the right spot to sit, some Ativan and four trips to the bathroom later, she is sleeping in her chair.....it's Noon.
Up at 12:30 eating a sandwich, much calmer now.
2:00 pm- the first 500cc IV is almost done. She has been more peaceful for the last hour or so, drifting in and out of sleep.
2:15 pm- the second IV starts and runs for only 30 minutes.....thankfully we are almost done.
2:50 pm-the port needle is flushed and pulled out (not too painful) .
3:05 pm- In the truck on our way home. 50% DONE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I wanted to tell you how proud I am of Misho. She is so strong, even though she would disagree. I have seeen her become more aware of each moment as it comes ( it is still a struggle sometimes). I have also seen her grow in her appreciation of all that life is. That is really a beautiful place to be, a place alot of us never get to. Blogging has given her a place to be open and honest with her feelings. She joined a support group this week, when she came home it was as if the fear and uncertainty melted off of her. I know that being in the company of others that have gone through similar life moments is very healing. Being with people that understand is so very comforting.
Each day holds victory for us, each day is also difficult for many reasons.
Thankfully we have all of you: thinking, reading and praying for us.......Jim
Tuesday, May 8, 2012
I can Exhale
These last few days have been hard on me. I have been uncomfortable and sad. I was so afraid that something was wrong, that the cancer was coming back. I know in my head that everything was OK, but the fear creeps in sometimes - like little mice running across the floor. I try to plug up all the holes that let them in, but they always find their way. I know that women die from this cancer and I was just afraid.
I went to the Dr. yesterday and was so disappointed. My blood work came back and my platelets and white counts were low. I did so well last time - everything came right back after my treatment. I recovered so quickly and felt so good. I was so surprised when they came back low. So disappointed - like I had failed. I know in my head that I didn't - but it still feels like I did. If they don't come up by Thursday - no chemo until Monday. I know that it doesn't sound that bad, but that will push everything back. July 12th won't be the last. She also sent a ca125 - cancer marker - and a UA to make sure that my discomfort wasn't anything.
I went to support group last night. It was good. I realized that I am lucky. There were so many in a worse place than I. It felt good to tell my story to people who really understood everything - they were in the midst of it too. I hope that I am as strong as they are.
The Dr.'s office called today. I was so scared. I didn't think that I would hear from them until Wednesday. First she told me that my UA was good. Then she asked if I had some time. I sure didn't like the sound of that. Then she told me that my ca125 was NORMAL. Wow. I couldn't believe it. I felt like I could exhale for the first time in a week. I think that I believe for the first time that the cancer is really gone. I know that they told me that I was "optimally debulked", but now I think that I believe it.
I went to the Dr. yesterday and was so disappointed. My blood work came back and my platelets and white counts were low. I did so well last time - everything came right back after my treatment. I recovered so quickly and felt so good. I was so surprised when they came back low. So disappointed - like I had failed. I know in my head that I didn't - but it still feels like I did. If they don't come up by Thursday - no chemo until Monday. I know that it doesn't sound that bad, but that will push everything back. July 12th won't be the last. She also sent a ca125 - cancer marker - and a UA to make sure that my discomfort wasn't anything.
I went to support group last night. It was good. I realized that I am lucky. There were so many in a worse place than I. It felt good to tell my story to people who really understood everything - they were in the midst of it too. I hope that I am as strong as they are.
The Dr.'s office called today. I was so scared. I didn't think that I would hear from them until Wednesday. First she told me that my UA was good. Then she asked if I had some time. I sure didn't like the sound of that. Then she told me that my ca125 was NORMAL. Wow. I couldn't believe it. I felt like I could exhale for the first time in a week. I think that I believe for the first time that the cancer is really gone. I know that they told me that I was "optimally debulked", but now I think that I believe it.
Sunday, May 6, 2012
Here we go again
Chemo number three is on its way this week. Thursday will make it half way. I am happy about that, but it still means that there are three more to go. July still seems so far away.
I have been doing really well this past week. My hair is all gone and I am fine with that. I can go out with out a problem. I get some looks, but most people have been really nice, maybe nicer than they would have otherwise been.
I did do one thing that I should not have done. I went looking on line for an advocacy group for ovarian cancer. There aren't many. I found one in Philadelphia, but that is the closest one. That upset me. This is such a horrible disease that effects so many woman. You hardly ever hear about it on the news or in the media. Then I started reading about it at the national Ovarian Cancer Coalition. It is so scary. There are so many woman dieing from this. It is so frustrating. I feel so helpless and sad. There is no test for it, there is no real symptoms and there is nothing to do to prevent it. I feel like it is a crap shoot and I lost. I still don't understand how this whole thing happened. I am so sad.
Devin went to Prom this weekend. She was so beautiful and grown up. Life goes on and I am still learning to dance in the rain, some times it is hard.
I have been doing really well this past week. My hair is all gone and I am fine with that. I can go out with out a problem. I get some looks, but most people have been really nice, maybe nicer than they would have otherwise been.
I did do one thing that I should not have done. I went looking on line for an advocacy group for ovarian cancer. There aren't many. I found one in Philadelphia, but that is the closest one. That upset me. This is such a horrible disease that effects so many woman. You hardly ever hear about it on the news or in the media. Then I started reading about it at the national Ovarian Cancer Coalition. It is so scary. There are so many woman dieing from this. It is so frustrating. I feel so helpless and sad. There is no test for it, there is no real symptoms and there is nothing to do to prevent it. I feel like it is a crap shoot and I lost. I still don't understand how this whole thing happened. I am so sad.
Devin went to Prom this weekend. She was so beautiful and grown up. Life goes on and I am still learning to dance in the rain, some times it is hard.
Tuesday, May 1, 2012
It's All Gone!
It is finally over. I shaved my head. I am now bald! and it's not that bad.
I had been worrying about this since the beginning. The Dr. told me that I would loose everything. I couldn't imagine how I would look with out hair. I knew that I would look sick and that people would stare. I hated the thought of that. I spent so much energy on it. There was hair everywhere, on the couch, in my clothes and all over the bathroom. I was so tired of it. I cried every time I got in the shower - seeing all the hair in my hands, wonder how much would be left on my head when I was done. It was so "heavy" caring all that fear around.
Shaving it was really hard - seeing the clippers and watching what hair I had fall on the floor. Very traumatic. But once it was done - it was so liberating. No more fear or worrying. It felt so light - physically and emotionally. I cleaned up all the hair from all over the house. It is over. It feels good.
I know that people look at me, but I don't care. This is me now. I don't like wearing hats and scarves, they make my head itch. I thought that I would be cold, but I'm not. It feels better just being bald. I went to a shower on Sunday and I took my hat off and was just bald. No big deal. Some people looked at me funny, but I can handle it better than I thought.
For once I can say that I am stronger than I thought.
I had been worrying about this since the beginning. The Dr. told me that I would loose everything. I couldn't imagine how I would look with out hair. I knew that I would look sick and that people would stare. I hated the thought of that. I spent so much energy on it. There was hair everywhere, on the couch, in my clothes and all over the bathroom. I was so tired of it. I cried every time I got in the shower - seeing all the hair in my hands, wonder how much would be left on my head when I was done. It was so "heavy" caring all that fear around.
Shaving it was really hard - seeing the clippers and watching what hair I had fall on the floor. Very traumatic. But once it was done - it was so liberating. No more fear or worrying. It felt so light - physically and emotionally. I cleaned up all the hair from all over the house. It is over. It feels good.
I know that people look at me, but I don't care. This is me now. I don't like wearing hats and scarves, they make my head itch. I thought that I would be cold, but I'm not. It feels better just being bald. I went to a shower on Sunday and I took my hat off and was just bald. No big deal. Some people looked at me funny, but I can handle it better than I thought.
For once I can say that I am stronger than I thought.
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