To hell and back...
Comments
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weekendOO7 said:Best medicine!
Children and grandchildren, sounds like a great weekend; enjoy.
I recall durning more stressful times, wondering, treatment, my father etc... I would surround myself with everything that was funny, cheerful, no world or local news (nothing negative). Girlfriends and laughter and I imagined the treatment working and killing the cancer. I made my poor sister in law uncomfortable because I would constantly make jokes about treatment, the ugly blankets... anything I could. It was hard at times because there's nothing funny about treatment or living with this but perhaps it was how I coped with hiding the monster. Crazy.
Amen to water, no one told me about it. I hate the stuff and joke that I'm allergic to it hence the fact I add all sorts of things to it but it's a game changer for sure. Anything to flush out bad cells.
Enjoy this weekend!
We had a great time last Saturday. No rain until the evening. The grandkids, my husband and our one dtr got to play in the pool. We had our cookout and ate outside. about the time our other dtr and her boyfriend had to leave it started to rain so the rest of us moved inside. The grands all were good. Sometimes the older 2 get into it but this time, no arguing.
I am back to working 5 days a week. Of course just to add some challenge to this time, my boss had knee replacement surgery yeterday. He is doing good but will be on disability for 2 weeks. Then he will be working from home for a while before he is back in the office. I am enjoying being able to work on stuff and not having to think about treatments and what days I am not going to be in the office.
Being tired seems to be a normal thing anymore. I try to get 8 - 9 hours sleep. It seems I feel better duirng the day if I do. Less than that I am really tired. More I feel like its too much sleep. I also went to Curves for the first time since like Nov. Only did about 1 1/2 times around and was tired. Did feel better the next day. My goal is to get in there every Saturday morning. On weekedays I don't work, or get out early, I am going to try and get in then too. At least it is a plan.
To be honest, being at work gives me many chances to laugh. Anyone who didn't know us would think we were all nuts. Maybe we are!!!
As to the water. Quite a few years ago it became a regular thing to see people walking around with a water bottle instead of a can of soda. Then we had 2 people in our area with cancer. It seemed everyone started eating better and more people were drinking water. That is when I got started but, like you, I wasn't sure I could drink more than a few cups. Cold water during the summer was easy. Water at all duirng winter, not so easy. As time went on I really got to liking the taste of water, regardless of the season. Good thing because it made it easier to drink the 2 liters a day during the treatments.
Have a good week.
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Familylindary said:weekend
We had a great time last Saturday. No rain until the evening. The grandkids, my husband and our one dtr got to play in the pool. We had our cookout and ate outside. about the time our other dtr and her boyfriend had to leave it started to rain so the rest of us moved inside. The grands all were good. Sometimes the older 2 get into it but this time, no arguing.
I am back to working 5 days a week. Of course just to add some challenge to this time, my boss had knee replacement surgery yeterday. He is doing good but will be on disability for 2 weeks. Then he will be working from home for a while before he is back in the office. I am enjoying being able to work on stuff and not having to think about treatments and what days I am not going to be in the office.
Being tired seems to be a normal thing anymore. I try to get 8 - 9 hours sleep. It seems I feel better duirng the day if I do. Less than that I am really tired. More I feel like its too much sleep. I also went to Curves for the first time since like Nov. Only did about 1 1/2 times around and was tired. Did feel better the next day. My goal is to get in there every Saturday morning. On weekedays I don't work, or get out early, I am going to try and get in then too. At least it is a plan.
To be honest, being at work gives me many chances to laugh. Anyone who didn't know us would think we were all nuts. Maybe we are!!!
As to the water. Quite a few years ago it became a regular thing to see people walking around with a water bottle instead of a can of soda. Then we had 2 people in our area with cancer. It seemed everyone started eating better and more people were drinking water. That is when I got started but, like you, I wasn't sure I could drink more than a few cups. Cold water during the summer was easy. Water at all duirng winter, not so easy. As time went on I really got to liking the taste of water, regardless of the season. Good thing because it made it easier to drink the 2 liters a day during the treatments.
Have a good week.
Family and work sound great!
Curves too! I need to get back at the club, I feel absolutely best when I go. I can't do everything at the same pace but I don't care. The hard part is getting up and going. If you make it through the door you're already a winner! Unbeknownst to me, last summer a workout fixture at the gym and wonderful woman I know had a stroke. She was taking medicine for menopause which she believes caused the stoke. Anyway, my point is she goes all the time, everyone has a story and all are trying rise above. She inspires me everyday, along with most everyone else in the place. It's empowering!
Because I used to be a gym rat, going back a fraction of what I used to be was painfully hard. Getting my mojo back was a big, flipping the cancer the bird moment for me. Love it! What imagery, 115 lbs of me, yelling obscenities to my microscopic cells...... Sorry!
Whatever I managed to do was success and it will be for you too!
My father is in pretty rough shape physically, it's horrible yet I watch him, working out in his chair, on the bed and if I'm lucky at the kitchen sick. He has horrible neuropathy in addition to other problems but he tries everyday. Perhaps he's where I get it from. He's never been in a gym but he never sat still and always worked harder than anyone I have ever known.
Hope the sun is shining where ever you are, have an amazing weekend!
Tomorrow I'm going white water rafting in the pouring rain with my family and oncologist, crazy as it sounds I can't wait... (I'll tell you later why). Wish me luck!
:-)
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To die for !
Girls,
You gotta try this salad; I saw it on a Martha re-run recently,
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keep on goin'OO7 said:Family
Family and work sound great!
Curves too! I need to get back at the club, I feel absolutely best when I go. I can't do everything at the same pace but I don't care. The hard part is getting up and going. If you make it through the door you're already a winner! Unbeknownst to me, last summer a workout fixture at the gym and wonderful woman I know had a stroke. She was taking medicine for menopause which she believes caused the stoke. Anyway, my point is she goes all the time, everyone has a story and all are trying rise above. She inspires me everyday, along with most everyone else in the place. It's empowering!
Because I used to be a gym rat, going back a fraction of what I used to be was painfully hard. Getting my mojo back was a big, flipping the cancer the bird moment for me. Love it! What imagery, 115 lbs of me, yelling obscenities to my microscopic cells...... Sorry!
Whatever I managed to do was success and it will be for you too!
My father is in pretty rough shape physically, it's horrible yet I watch him, working out in his chair, on the bed and if I'm lucky at the kitchen sick. He has horrible neuropathy in addition to other problems but he tries everyday. Perhaps he's where I get it from. He's never been in a gym but he never sat still and always worked harder than anyone I have ever known.
Hope the sun is shining where ever you are, have an amazing weekend!
Tomorrow I'm going white water rafting in the pouring rain with my family and oncologist, crazy as it sounds I can't wait... (I'll tell you later why). Wish me luck!
:-)
I've known people who have had to deal with neuropathy. All I know is that it is rough. My former boss has it but no a real bad case. She has some feeling in the feet. Her hands are ok. As long as he keep fighting it he will keep going.
The weekend has been busy. Taking car of my one daughter's dogs has b=me going over there twice a day. Fortunately a friend of hteir's will be taking care of them in the morning during the week. I do enjoy the extra walking. It is hard the first day or so and easier as the week goes on. Plus it is good for me. Now I am going to meet up with my son & his family for the local carnival and food fest. Glad we didn't go yesterday since we had a lot of rain around here. Should be fun.
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To live for!To die for !
Girls,
You gotta try this salad; I saw it on a Martha re-run recently,
Sounds wonderful! I'm growing Kale in my garden so I will try this tonight or perhaps this afternoon for lunch. I love the hearty green it holds up better than any other green in soups. I make an Italian soup Ribollita which kale is wonderful in. Thanks again for sharing, have a wonderful day!
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Busy WeekOO7 said:To live for!
Sounds wonderful! I'm growing Kale in my garden so I will try this tonight or perhaps this afternoon for lunch. I love the hearty green it holds up better than any other green in soups. I make an Italian soup Ribollita which kale is wonderful in. Thanks again for sharing, have a wonderful day!
Last week turned out to be a lot busier than I thought it would. Tues was the CT scan to determine the results of the chemo. I was also taking care of our one daughter's dogs while she was on vacation. That with work left me a little tired by the end of the week.
Today I saw the specialist to find out the options for "after chemo". He was glad to hear I had no problems during chemo except for the perforated bowel. I was hoping to hear the results from the chemo but it seems he needs more than just the first and last CT scans. There was one done after the 4th chemo which he was not sent plus info on the surgery I had for the perforated bowel in Jan. Once he gets all of the info he will present it to their medical group. They will review everything. The purpose is to see if they all agree that the cancer is gone. He is optimistic in that I tolerated the chemo so well. Not sure if one really has anythng to do with the other but I am hopeful. I won't heard the results for about 2 weeks.
Linda
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Mantel cell Lymphoma stage IV incurable
Hello, 007
I see you wrote in April this year, hope you are doing better.
This is all new to me and I'm a bit stressed!
I was diagnosed with Mantel cell Lymphoma stage 4 a few weeks ago. Just turned 68 years old, thought i was a healthy nana raising my four year old granddaughter while having her special needs twin brother every weekend. Plus going though the ongoing divorce of their parents we discovered they both may lose the kids.
I do not want their unstable mom to fine out about my diagnosis as this will hurt my husband and i in trying to gain full custody of our grandchildren.
Scar on neck healed. Had a power port put in October 20th. Still feel as though I'm healing from it. Will start Chemo (Bendamustine & Rituxan) next Monday November 2,2015 for six months. then transplant.What do people do for six hours while getting chemo. Should one eat before going early in the morning?
My biggest fear is i won't be around to see that my grandchildren have the best life possible.
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What to do during chemopj2015 said:Mantel cell Lymphoma stage IV incurable
Hello, 007
I see you wrote in April this year, hope you are doing better.
This is all new to me and I'm a bit stressed!
I was diagnosed with Mantel cell Lymphoma stage 4 a few weeks ago. Just turned 68 years old, thought i was a healthy nana raising my four year old granddaughter while having her special needs twin brother every weekend. Plus going though the ongoing divorce of their parents we discovered they both may lose the kids.
I do not want their unstable mom to fine out about my diagnosis as this will hurt my husband and i in trying to gain full custody of our grandchildren.
Scar on neck healed. Had a power port put in October 20th. Still feel as though I'm healing from it. Will start Chemo (Bendamustine & Rituxan) next Monday November 2,2015 for six months. then transplant.What do people do for six hours while getting chemo. Should one eat before going early in the morning?
My biggest fear is i won't be around to see that my grandchildren have the best life possible.
I wish you well during your first chemo. My husband gets R-CHOP for Diffuse Large B Cell NHL and he always has breakfast before chemo. We pack a small cooler, with yogurt, granola bars, a sandwich, juice,and other goodies to bring to the cancer center. We bring a bag with books, catalogs, crossword puzzles, and a notebook. Our cancer center has television, but we don't usually watch it. Some people listen to music with headphones. The first chemo for my husband was about six hours because they had to administer the Rituxan slowly to make sure he wouldn't have a reaction. He didn't, so now his treatments are one hour shorter. I hope your first chemo experience is a good one. Simone
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Hugspj2015 said:Mantel cell Lymphoma stage IV incurable
Hello, 007
I see you wrote in April this year, hope you are doing better.
This is all new to me and I'm a bit stressed!
I was diagnosed with Mantel cell Lymphoma stage 4 a few weeks ago. Just turned 68 years old, thought i was a healthy nana raising my four year old granddaughter while having her special needs twin brother every weekend. Plus going though the ongoing divorce of their parents we discovered they both may lose the kids.
I do not want their unstable mom to fine out about my diagnosis as this will hurt my husband and i in trying to gain full custody of our grandchildren.
Scar on neck healed. Had a power port put in October 20th. Still feel as though I'm healing from it. Will start Chemo (Bendamustine & Rituxan) next Monday November 2,2015 for six months. then transplant.What do people do for six hours while getting chemo. Should one eat before going early in the morning?
My biggest fear is i won't be around to see that my grandchildren have the best life possible.
I'm sorry you're in this group but happy you found this site for you will never be alone. You have a great deal on your plate. Right now you need to be selfish and really take care of yourself.
breathe...
When I'm stressed, I like to take a moment and release all things negative on exhale...
It's so terrifying right? Somehow we dig deeper in these times. You might even surprise yourself. You're young and need to watch your grand babies grow so take care and you'll be there. There are many Mantel cell survivors on this site who will help you along.
During treatment I didnt feel so hot, a tad sensitive to the meds. I took Benadry, steroid, then Rituxin. Six plus hours everytime. I didn't do so well when they rushed it along. I did much better when the infusion was slower. I was sleepy, heart raised a bit but ok otherwise. I brought a pillow, blanket, tablet, book, and four bottles of kombucha. I never felt like eating more than trailmix that I put together.
Just try to relax, read if you like. Music was always wonderful, I always brought earphones and my phone or iPod. Chris Botti for me, very calming.
I would definitely eat and bring something with you. Always better to be over prepared than under.
Try to remove all negativity, replace it with comedy and all things YOU like. I stop watching the news etc....
Please feel free to reach out, hiding my cancer was harder then having it sometimes. I wouldn't wish that on anyone but it also had its advantages too.
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What to do during chemoOO7 said:Hugs
I'm sorry you're in this group but happy you found this site for you will never be alone. You have a great deal on your plate. Right now you need to be selfish and really take care of yourself.
breathe...
When I'm stressed, I like to take a moment and release all things negative on exhale...
It's so terrifying right? Somehow we dig deeper in these times. You might even surprise yourself. You're young and need to watch your grand babies grow so take care and you'll be there. There are many Mantel cell survivors on this site who will help you along.
During treatment I didnt feel so hot, a tad sensitive to the meds. I took Benadry, steroid, then Rituxin. Six plus hours everytime. I didn't do so well when they rushed it along. I did much better when the infusion was slower. I was sleepy, heart raised a bit but ok otherwise. I brought a pillow, blanket, tablet, book, and four bottles of kombucha. I never felt like eating more than trailmix that I put together.
Just try to relax, read if you like. Music was always wonderful, I always brought earphones and my phone or iPod. Chris Botti for me, very calming.
I would definitely eat and bring something with you. Always better to be over prepared than under.
Try to remove all negativity, replace it with comedy and all things YOU like. I stop watching the news etc....
Please feel free to reach out, hiding my cancer was harder then having it sometimes. I wouldn't wish that on anyone but it also had its advantages too.
Chemo day was like a mini-vacation, in a way. I would bring my yogurt, nutritional drink, v-8, some fiber bars and cheese nips. I am one who has to have the tv on for background noise, if nothing else. I bring the cross-word puzzle from the daily paper and a book to read. Also my journal to update it. Near the end of the R-Chop sessions I found my self sleeping for an hour or two. I thought the time went pretty quick.
I am heading into StemCell soon and there will be 1 - 3 days of stem cell collection. they say it willt ake baout 6 hours and, get this, I cannot get up and go to the bathroom. They use a big machine and there is no bringing it with into the bathroom. No eating or water after midnight. In other words, I need to be somewhat dehydrated so I don't feel the urge to go pee.
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Thinking of you, pj2015pj2015 said:Mantel cell Lymphoma stage IV incurable
Hello, 007
I see you wrote in April this year, hope you are doing better.
This is all new to me and I'm a bit stressed!
I was diagnosed with Mantel cell Lymphoma stage 4 a few weeks ago. Just turned 68 years old, thought i was a healthy nana raising my four year old granddaughter while having her special needs twin brother every weekend. Plus going though the ongoing divorce of their parents we discovered they both may lose the kids.
I do not want their unstable mom to fine out about my diagnosis as this will hurt my husband and i in trying to gain full custody of our grandchildren.
Scar on neck healed. Had a power port put in October 20th. Still feel as though I'm healing from it. Will start Chemo (Bendamustine & Rituxan) next Monday November 2,2015 for six months. then transplant.What do people do for six hours while getting chemo. Should one eat before going early in the morning?
My biggest fear is i won't be around to see that my grandchildren have the best life possible.
I failed to mention something about stress. I understand your need to keep this under the radar but make a promise to yourself to stay away from all stress as much as possible. Stress feeds the monster. We have something in common, having cancer wasn't the only major life altering stressor. I worried about my two young children, my father and protecting him from my diagnosis, my mother and lastly me and treatment.
When my daughter was born, my little peanut had medical problems. I won't get into them but suffice to say it was beyond stressful. She was on a heart monitor for two years and had a breathing issue. I didn't sleep for months, even hired a nurse so I could. It was that bad. Today she is perfectly healthy and we have an incredible even ridiculous and wonderful bond. She was twelve when I was diagnosed. My son is my first born, need I say more. I love him to infinity and beyond as Buzz Lightyear would say.
When my daughter was sick I learned something about strength, when I was diagnosed I mastered it.
You can hide your cancer, kick it where the sun doesn't shine and raise your beautiful grand babies.
Learn to walk away from what you can not change, work on you. Think of all good things, laugh a lot. Positivity and laughter are so healing and do I dare say conquering.
Best to you!
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007OO7 said:Thank You
You're kind GKH. Thank you.
When I wrote that I still had my father. August first I was forced to let him go, quite literally (I was holding his hand) 2:33 am. Today I may be back, only broken.
All my best...
but you are less broken each day. When I first talked with you and you told about hiding your cancer from your family, I thought How?
I was new to this cancer thing then. It's been 10 months and I realized lately that if it weren't for my hair still being gone, and all the medical appointments, I could easily go through my days pretending it never happened. I thnk I am beginning to understand how you were able to interact with your family and not tell them about the cancer. I still am in awe of you having done it.
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Emotional part of what you experiencedOO7 said:Thank You
You're kind GKH. Thank you.
When I wrote that I still had my father. August first I was forced to let him go, quite literally (I was holding his hand) 2:33 am. Today I may be back, only broken.
All my best...
if I were a doctor, and I am not, I would say you have PTSD. You may want to look at treatment for that condition. In any case, best of luck.
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Thank youlindary said:007
but you are less broken each day. When I first talked with you and you told about hiding your cancer from your family, I thought How?
I was new to this cancer thing then. It's been 10 months and I realized lately that if it weren't for my hair still being gone, and all the medical appointments, I could easily go through my days pretending it never happened. I thnk I am beginning to understand how you were able to interact with your family and not tell them about the cancer. I still am in awe of you having done it.
your words mean a great deal to me although I don't feel worthy. I didn't do anything you or anyone else would not have done. Thankfully you didn't have that journey. When I read what you had written I was moved not only by your kindness and generosity but then realized how few people actually know....
Twisted but not all that bad, disappointing but really appreciate/needed to read that.
Everyone of us has a story, it's difficult whether you and your father were diagnosis within weeks of each other and you have to hide this ridiculous and even horrific ordeal or not. I'll be honest it was horrible but I had to move forward. I know life will throw "stuff" at at me but it's what I do with the "stuff" that matters.
Best for last. Yes, less broken each day. How I wish things were different and my eyes were spared what they witnessed. My father truly was a Great man and I need to stop being selfish and celebrate who he was. I guess I have weak moments and this 40+ year old woman, is still "his" little girl.
Thank you again. Truth be told I'm in awe with you. Have been from the beginning, with how you work and deal with this "stuff" the way you do! Amazing.
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StrengthOO7 said:Thank you
your words mean a great deal to me although I don't feel worthy. I didn't do anything you or anyone else would not have done. Thankfully you didn't have that journey. When I read what you had written I was moved not only by your kindness and generosity but then realized how few people actually know....
Twisted but not all that bad, disappointing but really appreciate/needed to read that.
Everyone of us has a story, it's difficult whether you and your father were diagnosis within weeks of each other and you have to hide this ridiculous and even horrific ordeal or not. I'll be honest it was horrible but I had to move forward. I know life will throw "stuff" at at me but it's what I do with the "stuff" that matters.
Best for last. Yes, less broken each day. How I wish things were different and my eyes were spared what they witnessed. My father truly was a Great man and I need to stop being selfish and celebrate who he was. I guess I have weak moments and this 40+ year old woman, is still "his" little girl.
Thank you again. Truth be told I'm in awe with you. Have been from the beginning, with how you work and deal with this "stuff" the way you do! Amazing.
We each have been able to find the strength we needed to deal with our situations.
With me being so open about things I have had to deal with relatives on my husband's side who hear the work Cancer and immediately have the person dead and buried. One young person who is not in my email group, gets his updates from other family members. Yesterday he contacted me asking if I was dying because he had heard I was getting worse.
So there are times I think about you and feel that not telling everyone you know was not a "bad" idea.
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I thought so toounknown said:Emotional part of what you experienced
if I were a doctor, and I am not, I would say you have PTSD. You may want to look at treatment for that condition. In any case, best of luck.
Though I don't have PTSD I do work with someone. Not having much support or opportunity to vent, I find it a great outlet. Wonderful in fact. I'm great at being positive and helping others but TERRIBLE at taking care of myself.
I was my father's only daughter. I have three brothers. This shared lymphoma diagnosis at the same time seems cruel but as I type this right now I can honesty write that I'm glad he wasn't alone in this because even though it was in secret I "knew" what he was going through and he wasn't alone. There were shared glances that he must have wondered about then, perhaps he knows why now.
Thank You.
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Indeedlindary said:Strength
We each have been able to find the strength we needed to deal with our situations.
With me being so open about things I have had to deal with relatives on my husband's side who hear the work Cancer and immediately have the person dead and buried. One young person who is not in my email group, gets his updates from other family members. Yesterday he contacted me asking if I was dying because he had heard I was getting worse.
So there are times I think about you and feel that not telling everyone you know was not a "bad" idea.
I see what you mean. Oddly as I was being tested before I was diagnosised, a friend of mine who is rather famous had a recurrence of his cancer. It was all over the media, prayers were coming in from all over. Selfishly it scared me because I had like four people who knew and I wasn't sure if they prayed!
I've come a long way since then. My cousin was diagnosed with prostate cancer, my father of course right after me and then my maid of honor at my wedding was diagnosis three months after me. I witnessed the love, care and concern they all received and noticed like you a few times when they wished for privacy.
No matter what its hard, I don't know how I pulled off Christmas last year but I did. I recall listening to complaints at my dinner table because I wasn't attending every festivity bla, bla, bla.... I had treatment ten days before Christmas, my dad was not well and people complained about the darnest things that had no worth. In those moments I wished I could have told them. How ridiculous it was and yet I couldn't be mad for they didn't know.
I have learned not to complain since having been on this road.
I'm trilled you're going to enjoy the holidays then after it all, seems like a perfect time to kick butt so to speak!
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Fight onOO7 said:Indeed
I see what you mean. Oddly as I was being tested before I was diagnosised, a friend of mine who is rather famous had a recurrence of his cancer. It was all over the media, prayers were coming in from all over. Selfishly it scared me because I had like four people who knew and I wasn't sure if they prayed!
I've come a long way since then. My cousin was diagnosed with prostate cancer, my father of course right after me and then my maid of honor at my wedding was diagnosis three months after me. I witnessed the love, care and concern they all received and noticed like you a few times when they wished for privacy.
No matter what its hard, I don't know how I pulled off Christmas last year but I did. I recall listening to complaints at my dinner table because I wasn't attending every festivity bla, bla, bla.... I had treatment ten days before Christmas, my dad was not well and people complained about the darnest things that had no worth. In those moments I wished I could have told them. How ridiculous it was and yet I couldn't be mad for they didn't know.
I have learned not to complain since having been on this road.
I'm trilled you're going to enjoy the holidays then after it all, seems like a perfect time to kick butt so to speak!
As warriors all we can do is keep moving forward. I find that seeing my kids is more important to me now than before. Before if I didn't see one of them for a month or more, well they are busy. Now I want to see them at leat once a month. They are all adults and have their own lives and I talked to them via text or online, but I want to see them, face to face too. With the holidays I get what I want without telling them. ha-ha.
I hope you get to enjoy the holidays too.
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