Chemo and the sun
Comments
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Time HelpsBluebirdOne said:Thanks, Michelle
In this order the effects of being diagnosed for me are: 1. Emotional distress, depression, etc. 2. Hair loss (see #1) 3. Chemo side effects 4. Surgery 5. Radiation
Obviously, the shorter immediate physical effects of surgery, radiation and chemo were over quickly. The hair grew back, but I was bald or mostly hairless for 5-6 months. The emotional side is a daily struggle as we all come to terms with what is happening and what may happen. I can heal from surgery, chemo and radiation, I can grow my hair back, but the daily emotional toll all of the treatment, side effects and effort putting on a happy, positive face for others has been very difficult for me. I do consider myself very, very lucky to have this cancer, instead of others that are instant death sentences, difficult treatment, and debiliatating side effects. I consider myself lucky to have caught it so soon. I consider myself lucky because of the easy surgery, few lasting side effects and now NED. I know I am lucky, but the emotional toll keeps creeping up. I am having some deja vu about my initial dx time exactly one year ago, and it is freaking me out. If it continues I will seek professional help. In the end I feel like I can't complain knowing what others have gone through. I hope to remain lucky!
Denise
You are so right about the emotional distress that comes with this diagnosis. It doesn't just stop when treatment ends because it's really, really hard to believe that you may have been cured by all that you've been through. For some, there is also some aftermath that has to be learned to live with. Scanxiety is a real thing and the weeks running up to that next follow-up doctor appointment are such a b***h to get through.
For myself, I can say that what has really helped is getting to the next milestone. I never rang a bell at the end of chemo or celebrated finishing radiation, but when my follow-ups got cut back from every 3 months to 6, now that was worth a whoop-dee-doo or two! It just seemed to make the dark cloud of worry that followed me everywhere get quite a bit smaller. I don't know if that is true for everyone, but I can point to that event being such a big deal for me and my worries about a recurrence.
It takes time being NED to make this trauma feel like a bad dream. I don't expect to ever feel entirely immune to recurrence since I had an advanced, high grade cancer, but I'm not as afraid of those check-ups as I used to be.
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Hi Denise , u certainly haveBluebirdOne said:Thanks, Michelle
In this order the effects of being diagnosed for me are: 1. Emotional distress, depression, etc. 2. Hair loss (see #1) 3. Chemo side effects 4. Surgery 5. Radiation
Obviously, the shorter immediate physical effects of surgery, radiation and chemo were over quickly. The hair grew back, but I was bald or mostly hairless for 5-6 months. The emotional side is a daily struggle as we all come to terms with what is happening and what may happen. I can heal from surgery, chemo and radiation, I can grow my hair back, but the daily emotional toll all of the treatment, side effects and effort putting on a happy, positive face for others has been very difficult for me. I do consider myself very, very lucky to have this cancer, instead of others that are instant death sentences, difficult treatment, and debiliatating side effects. I consider myself lucky to have caught it so soon. I consider myself lucky because of the easy surgery, few lasting side effects and now NED. I know I am lucky, but the emotional toll keeps creeping up. I am having some deja vu about my initial dx time exactly one year ago, and it is freaking me out. If it continues I will seek professional help. In the end I feel like I can't complain knowing what others have gone through. I hope to remain lucky!
Denise
Hi Denise , u certainly have much to feel lucky about and I'm so happy to hear that you're one year out! That's a blessing ! I certainly can understand your emotional concerns! All the uncertainties is very waring emotionally ! Stay positive my dear!
I'm just in the beginning of this whole journey. I have had surgery and rebounded very quickly from that and felt great! On the 30th I will begin treatment. Since I found out that I will be having treatment I have been in emotional wreck. Not sleeping and fighting through depression for sure. I reluctantly got a prescription for something to help me sleep two nights ago but it's not working so far. Any suggestions?
I too got through surgery thankfully no complications , hoping to get through the physical effects of chemo and radiation stronger than I think I'm going to. But it's the emotional distraught that's got me the most . When i start losing my hair I know that is going to be traumatic and feeling I lose the sense of who I am, but mostly just not knowing what's going to happen to me and my body. Wishing I could stay positive but no sleep and stress of this all is very hard emotionally . And like u , I anticipate it won't stop even after treatment because I'll be worrying every time I have a check up and the what ifs . I've been told repeatedly to live for today but easier said than done .
I hope 1 year out that you find you inner strength and also STAY LUCKY
Michelle
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icingFeelingalone74 said:Hi Denise , u certainly have
Hi Denise , u certainly have much to feel lucky about and I'm so happy to hear that you're one year out! That's a blessing ! I certainly can understand your emotional concerns! All the uncertainties is very waring emotionally ! Stay positive my dear!
I'm just in the beginning of this whole journey. I have had surgery and rebounded very quickly from that and felt great! On the 30th I will begin treatment. Since I found out that I will be having treatment I have been in emotional wreck. Not sleeping and fighting through depression for sure. I reluctantly got a prescription for something to help me sleep two nights ago but it's not working so far. Any suggestions?
I too got through surgery thankfully no complications , hoping to get through the physical effects of chemo and radiation stronger than I think I'm going to. But it's the emotional distraught that's got me the most . When i start losing my hair I know that is going to be traumatic and feeling I lose the sense of who I am, but mostly just not knowing what's going to happen to me and my body. Wishing I could stay positive but no sleep and stress of this all is very hard emotionally . And like u , I anticipate it won't stop even after treatment because I'll be worrying every time I have a check up and the what ifs . I've been told repeatedly to live for today but easier said than done .
I hope 1 year out that you find you inner strength and also STAY LUCKY
Michelle
Just in case you haven't seen all of the threads here yet on icing, I thought I'd make you aware that it is something you need to look into and consider before you start chemo.
Icing your hands and feet really helps to prevent chemo induced peripheral neuropathy and there are special icing caps, too, to prevent hair loss. CIPN can be a permanent side effect of chemo you really don't want because not much touches that pain, whereas hair loss is temporary in spite of how it impacts our self identity.
There are plenty of threads with links to where to buy hypothermia mittens, socks, or slippers or hacks on how to do it cheaper if cost is an issue for you. I don't think anybody has mentioned a hack for ice capping, but if it comes down to doing some rather than all, give priority to icing your hands and feet over saving your hair. Many of us find not having to fuss with our hair for a while kind of liberating, but I know I didn't buzz my hair early because I felt like I was losing myself as it was falling out. I had a nice wig, though, and felt ok going out in it with all of the nice complements I got.
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Hi Michelle
I live in South Texas and had chemo from June - October, and did fine without spending too much time in the sun. If I had had a pool, I'd have been much more tempted! Definitely ask your doctor. So glad to hear you did well through surgery. I sure understand your trepidation about chemo - the day before I started, I was on the phone for 3 hours with a friend who had been through it and she really had to talk me off the ledge. I was sure I was going to die from the first infusion! Good news - you won't! You will be in wonderful hands with experienced staff who do this every day. Pay attention to how you feel, and don't hesitate to call your nurse case manager if anything feels really wrong. I'll give you an example, not to scare you, but to inform. On Day 3 after my first chemo, I developed acute onset severe neuropathy in my arms and legs. It's like the worst case of "foot falling asleep" you can imagine. Painful. Couldn't walk properly, couldn't use my hands. On Day 4, I felt horrible. My heart was racing, and no matter how still I lay, I couldn't get my heart rate under 160. I was really calm, but I KNEW I needed to go to the hospital immediately. But here's the thing: I had heard chemo made you feel awful, and I didn't know if this was the normal awful or a wrong awful. I trusted my gut that I needed to go, and it was a really good thing. They didn't have to shock my heart, and were able to use an IV drug to get the rate down; I was having aFib as well as the RVR, and the aFib finally resolved itself the next morning. I saw my oncologist after I was released and told her I didn't think I wanted to continue chemo if it was going to be like that. We weren't sure if it was the taxol or the steroids given with chemo or both that caused the heart stuff. My doctor decided that the second chemo would be carboplatin only, and I asked if we could cut the steroid dose in half as well. She told me that often when neuropathy hits suddenly and severely, it will dissipate, and it DID. It was a blessing straight from heaven. The second chemo was a breeze. I asked what we were going to substitute for the taxol, and the doctor agreed to taxotere for the remaining 4 treatments. They weren't a picnic, but certainly not nearly as bad as the first one, and I wore a heart monitor for thirty days to keep an eye one that part. I iced my hands and feet during every infusion, and I am thankful to report that I had no more neuropathy.
I want to encourage you about hair loss. I was upset too - we all are. That episode in the hospital with my heart and arms and legs really put the hair in perspective for me. it was still hard to cut it and lose the rest, but compared to your LIFE, it's a small price to pay. As I'm typing this, my hair is touching my shoulders, exactly a year after I put my wig away for the last time. I have loved it, and tomorrow I'm going to go get it cut really short because Texas in summer doesn't play and it's HOT! Buy yourself some cotton beanies and some really cute earrings. I wore that at home and wore my wig every time I went out. I have mentioned this a hundred times, but the feel of a warm shower on a bald head is luxurious, so try to find the little silver linings. This is a really temporary situation. I am not minimizing it, because I cried my buckets, and my daughter didn't want to see me without that wig, ever. I just want you to know that it comes back faster than you can believe - I've had at least four haircuts and two colors since last May. It's going to be ok!!
And all of you above, I sure appreciate the frankness in discussing the emotional parts. I agree - that's definitely the longest-lasting, most intrusive side effect! Thankful for all of you because we really do understand each other.
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Well said!Armywife said:Hi Michelle
I live in South Texas and had chemo from June - October, and did fine without spending too much time in the sun. If I had had a pool, I'd have been much more tempted! Definitely ask your doctor. So glad to hear you did well through surgery. I sure understand your trepidation about chemo - the day before I started, I was on the phone for 3 hours with a friend who had been through it and she really had to talk me off the ledge. I was sure I was going to die from the first infusion! Good news - you won't! You will be in wonderful hands with experienced staff who do this every day. Pay attention to how you feel, and don't hesitate to call your nurse case manager if anything feels really wrong. I'll give you an example, not to scare you, but to inform. On Day 3 after my first chemo, I developed acute onset severe neuropathy in my arms and legs. It's like the worst case of "foot falling asleep" you can imagine. Painful. Couldn't walk properly, couldn't use my hands. On Day 4, I felt horrible. My heart was racing, and no matter how still I lay, I couldn't get my heart rate under 160. I was really calm, but I KNEW I needed to go to the hospital immediately. But here's the thing: I had heard chemo made you feel awful, and I didn't know if this was the normal awful or a wrong awful. I trusted my gut that I needed to go, and it was a really good thing. They didn't have to shock my heart, and were able to use an IV drug to get the rate down; I was having aFib as well as the RVR, and the aFib finally resolved itself the next morning. I saw my oncologist after I was released and told her I didn't think I wanted to continue chemo if it was going to be like that. We weren't sure if it was the taxol or the steroids given with chemo or both that caused the heart stuff. My doctor decided that the second chemo would be carboplatin only, and I asked if we could cut the steroid dose in half as well. She told me that often when neuropathy hits suddenly and severely, it will dissipate, and it DID. It was a blessing straight from heaven. The second chemo was a breeze. I asked what we were going to substitute for the taxol, and the doctor agreed to taxotere for the remaining 4 treatments. They weren't a picnic, but certainly not nearly as bad as the first one, and I wore a heart monitor for thirty days to keep an eye one that part. I iced my hands and feet during every infusion, and I am thankful to report that I had no more neuropathy.
I want to encourage you about hair loss. I was upset too - we all are. That episode in the hospital with my heart and arms and legs really put the hair in perspective for me. it was still hard to cut it and lose the rest, but compared to your LIFE, it's a small price to pay. As I'm typing this, my hair is touching my shoulders, exactly a year after I put my wig away for the last time. I have loved it, and tomorrow I'm going to go get it cut really short because Texas in summer doesn't play and it's HOT! Buy yourself some cotton beanies and some really cute earrings. I wore that at home and wore my wig every time I went out. I have mentioned this a hundred times, but the feel of a warm shower on a bald head is luxurious, so try to find the little silver linings. This is a really temporary situation. I am not minimizing it, because I cried my buckets, and my daughter didn't want to see me without that wig, ever. I just want you to know that it comes back faster than you can believe - I've had at least four haircuts and two colors since last May. It's going to be ok!!
And all of you above, I sure appreciate the frankness in discussing the emotional parts. I agree - that's definitely the longest-lasting, most intrusive side effect! Thankful for all of you because we really do understand each other.
Well said, Armywife! I didn't know you'd gone through all that with your first infusion, you're a trooper1
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I did my chemo in the heat of
I did my chemo in the heat of the summer also. I remember being told to avoid the sun and use sunscrrean when needed. For the most part i did avoid it. There was one day i went to a swimpoiol with my family. I used a big umbrella to shade me the whole time. I had no problems in that regard. It was hot and wearing my wig was hot and when inside my house i went without a wig because of that.
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Hi ArmyWife, Thank you forArmywife said:Hi Michelle
I live in South Texas and had chemo from June - October, and did fine without spending too much time in the sun. If I had had a pool, I'd have been much more tempted! Definitely ask your doctor. So glad to hear you did well through surgery. I sure understand your trepidation about chemo - the day before I started, I was on the phone for 3 hours with a friend who had been through it and she really had to talk me off the ledge. I was sure I was going to die from the first infusion! Good news - you won't! You will be in wonderful hands with experienced staff who do this every day. Pay attention to how you feel, and don't hesitate to call your nurse case manager if anything feels really wrong. I'll give you an example, not to scare you, but to inform. On Day 3 after my first chemo, I developed acute onset severe neuropathy in my arms and legs. It's like the worst case of "foot falling asleep" you can imagine. Painful. Couldn't walk properly, couldn't use my hands. On Day 4, I felt horrible. My heart was racing, and no matter how still I lay, I couldn't get my heart rate under 160. I was really calm, but I KNEW I needed to go to the hospital immediately. But here's the thing: I had heard chemo made you feel awful, and I didn't know if this was the normal awful or a wrong awful. I trusted my gut that I needed to go, and it was a really good thing. They didn't have to shock my heart, and were able to use an IV drug to get the rate down; I was having aFib as well as the RVR, and the aFib finally resolved itself the next morning. I saw my oncologist after I was released and told her I didn't think I wanted to continue chemo if it was going to be like that. We weren't sure if it was the taxol or the steroids given with chemo or both that caused the heart stuff. My doctor decided that the second chemo would be carboplatin only, and I asked if we could cut the steroid dose in half as well. She told me that often when neuropathy hits suddenly and severely, it will dissipate, and it DID. It was a blessing straight from heaven. The second chemo was a breeze. I asked what we were going to substitute for the taxol, and the doctor agreed to taxotere for the remaining 4 treatments. They weren't a picnic, but certainly not nearly as bad as the first one, and I wore a heart monitor for thirty days to keep an eye one that part. I iced my hands and feet during every infusion, and I am thankful to report that I had no more neuropathy.
I want to encourage you about hair loss. I was upset too - we all are. That episode in the hospital with my heart and arms and legs really put the hair in perspective for me. it was still hard to cut it and lose the rest, but compared to your LIFE, it's a small price to pay. As I'm typing this, my hair is touching my shoulders, exactly a year after I put my wig away for the last time. I have loved it, and tomorrow I'm going to go get it cut really short because Texas in summer doesn't play and it's HOT! Buy yourself some cotton beanies and some really cute earrings. I wore that at home and wore my wig every time I went out. I have mentioned this a hundred times, but the feel of a warm shower on a bald head is luxurious, so try to find the little silver linings. This is a really temporary situation. I am not minimizing it, because I cried my buckets, and my daughter didn't want to see me without that wig, ever. I just want you to know that it comes back faster than you can believe - I've had at least four haircuts and two colors since last May. It's going to be ok!!
And all of you above, I sure appreciate the frankness in discussing the emotional parts. I agree - that's definitely the longest-lasting, most intrusive side effect! Thankful for all of you because we really do understand each other.
Hi ArmyWife, Thank you for your inspiration and sharing your journey . You've all been so kind and it's helpful to talk with you all whom really understand what it's like . Hearing that's it's going to be ok warms my very anxious heart!
I'm relieved to hear that I won't die from the 1st infusion because of course that's what my fear is and not knowing how my body will tolerate it. I'm so sorry that you had difficulty with your first infusion! I'm glad it got better for you! I have already told them at the center that I will be requesting ice during infusion 2 hopefully minimize neuropathy . ...thanks to all of your advice . I feel great right now so going to the st infusion the 30th is going to really be tough when I have no current pain nor to I feel sick. I know I've been in denial giving how amazing I feel currently .
Any advice on how to deal with no sleep ? My mind races all night long . Since my pathology report I sleep only 2 hrs if I'm lucky a night. During the day I keep mu self busy to minimize my thoughts. Nights are hard. I just started taking Ambien 2 nights ago...unfortunately it isn't helping
Though I know the hair loss will be traumatic for me as you said Life is more important than hair . I'm happy to say that I meant this most wonderful beautician via the center I'm going to . She invited me to her Salon for a consultation . She helped me choose a hair color and wig that would best match my current hairstyle. To say she is an angel would be an understatement! Yesterday I went to pick it up and she also gave me a makeup lesson and how to apply my eyebrows. What a blessing she is! It will definitely take some time to get used to it. I'm going to miss my own long hair for sure but I'm grateful to have been able to get it prior to my hair loss.
I have gotten a beanie and a headband that has a ponytail and side whispes to where under my baseball cap. My son and I are big baseball fans so wearing a cap and ponytail will be familiar . I don't plan to leave my bedroom in the a.m without it post hair loss , much like your daughter he would deviated to see me with no hair ,
Sounds like your hair has grown back very pretty ! And so relieved to hear it will come back faster than I think it will .
When should I be expecting that I'll loose my eyebrows and lashes ? That's another big breath I can't swallow.
Stay cool in the Texas heat!
Warmly Michelle
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I am the sameBluebirdOne said:Cindi, you are so right!
With three kids I have the full spectrum. One is totally able to accept what is going on, allows me to talk about everything and is very supportive. My son's approach is how he approaches his life, no negatives allowed, changes the subject whenever there is something the least bit unpleasant happening, is not really very supportive about my situation because I think he is just thinking it will go away if we don't talk about it. My youngest daughter is a mix of the two, she will listen but she prefers not to talk much about anything regarding the cancer. Luckily, my husband is terrific and the friends I have chosen to tell are also incredibly supportive. I have a sisterin-law who I have had to hold at arm's length because of her emotional reaction to me, plus her mother and best friend recently passed away from cancer. After the first months of surgery, treatment and recovery, I eventually settled down emotionally, and now I do the same as you. I put it into a box that I don't open as much anymore and go on with living. I am so thankful to have this board and the many supportive women as well as the informative topics and experiences that help to understand what is happening and options. I am having a bit of mild PTSD at the moment as I was diagnosed exactly one year ago, so the weather and summer season is triggering for me. This is a surprise as I would not have guessed I would be having these feelings. My ability to handle stress has also decreased in the past few weeks, different feeling than the scan anxiety that I had in May. So for me the emotional aspect has been much more difficult because the ability to cope comes and goes. Thanks for the response.
Denise
My one year surgery anniversary was yesterday. I think about it compulsively. I expect that it will get better over time. But It is unvelievably hard to put it in that box. What will be will be. Taht was my favoite song . Maybe it was deja vue.
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Yes!Fridays Child said:"Decadron glow" is not sunburn!
Just remembered something, Feelingalone. A day or so after chemo you may have the "decadron glow" in which your face turns red and hot and feels like it's sunburned. It will go away after a day or so. I found 100% aloe gel to help with that.
I had rosy cheeks after the steroid, didn't really feel hot though. Also, my husband said I was "fiesty" LOL
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Ice and EyebrowsFeelingalone74 said:Hi ArmyWife, Thank you for
Hi ArmyWife, Thank you for your inspiration and sharing your journey . You've all been so kind and it's helpful to talk with you all whom really understand what it's like . Hearing that's it's going to be ok warms my very anxious heart!
I'm relieved to hear that I won't die from the 1st infusion because of course that's what my fear is and not knowing how my body will tolerate it. I'm so sorry that you had difficulty with your first infusion! I'm glad it got better for you! I have already told them at the center that I will be requesting ice during infusion 2 hopefully minimize neuropathy . ...thanks to all of your advice . I feel great right now so going to the st infusion the 30th is going to really be tough when I have no current pain nor to I feel sick. I know I've been in denial giving how amazing I feel currently .
Any advice on how to deal with no sleep ? My mind races all night long . Since my pathology report I sleep only 2 hrs if I'm lucky a night. During the day I keep mu self busy to minimize my thoughts. Nights are hard. I just started taking Ambien 2 nights ago...unfortunately it isn't helping
Though I know the hair loss will be traumatic for me as you said Life is more important than hair . I'm happy to say that I meant this most wonderful beautician via the center I'm going to . She invited me to her Salon for a consultation . She helped me choose a hair color and wig that would best match my current hairstyle. To say she is an angel would be an understatement! Yesterday I went to pick it up and she also gave me a makeup lesson and how to apply my eyebrows. What a blessing she is! It will definitely take some time to get used to it. I'm going to miss my own long hair for sure but I'm grateful to have been able to get it prior to my hair loss.
I have gotten a beanie and a headband that has a ponytail and side whispes to where under my baseball cap. My son and I are big baseball fans so wearing a cap and ponytail will be familiar . I don't plan to leave my bedroom in the a.m without it post hair loss , much like your daughter he would deviated to see me with no hair ,
Sounds like your hair has grown back very pretty ! And so relieved to hear it will come back faster than I think it will .
When should I be expecting that I'll loose my eyebrows and lashes ? That's another big breath I can't swallow.
Stay cool in the Texas heat!
Warmly Michelle
Michelle, I used plain old cold packs from Target. I didn't want to spend the money on the mitts and booties from amazon. I wrapped the cold packs in kitchen towels and secured with a rubber band. It looked like the Beverly Hillbillies but it worked! Ice is your friend! Also, I think I saw on another post where you or another new member were asking about what to do during infusion. The benadryl will give you a nice drowsiness. By the time you relax under the warm blanket, doze a bit, have some snacks and plenty to drink, and chat with the nurses and fellow patients, the day goes pretty fast! I made great friends in the chemo room. Never even had time for the tv, but there was one right in my cubicle. I had a tote bag full of books and pastimes, and never messed with it - did sort of paw at my phone scrolling facebook though.
I was a failure with eyebrow pencil, but found a brow stencil and powder worked great for me - and I still use them to enhance my brows, which came back a little thin. Eyelashes came back before I knew it and are even longer now, wlthough there are a couple of thin spots on my bottom lashes. Nothing some good mascara can't help with.
Port surgery is not bad. You'll be awake but sedated. I felt a little pressure. You've got to keep the incision dry for a few days and also avoid putting your arm up over your head for a couple weeks so the tube can "seat" well in your vena cava. Your chemo nurse may give you some lidocaine gel to put on so you don't feel the little pinch when they access your port, but honestly I don't even bother with the gel anymore for my monthly port flushes - it doesn't even hurt.
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My hysteroscopy was July 10, DX July 12Forherself said:I am the same
My one year surgery anniversary was yesterday. I think about it compulsively. I expect that it will get better over time. But It is unvelievably hard to put it in that box. What will be will be. Taht was my favoite song . Maybe it was deja vue.
Surgery July 26, 2018. So this is the hot spot for me weather wise and anniversary wise. And our newest members remind me of when I was in their shoes and received wonderful support from everyone here, but it is still hard to forget my feelings, deja vue, indeed. Compared to my state of mind one year ago, I feel like the poster old lady for mental health. Now I just need to get a hammer and some nails to nail that box shut!
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Michelle, another thing I was told to do byFeelingalone74 said:Hi ArmyWife, Thank you for
Hi ArmyWife, Thank you for your inspiration and sharing your journey . You've all been so kind and it's helpful to talk with you all whom really understand what it's like . Hearing that's it's going to be ok warms my very anxious heart!
I'm relieved to hear that I won't die from the 1st infusion because of course that's what my fear is and not knowing how my body will tolerate it. I'm so sorry that you had difficulty with your first infusion! I'm glad it got better for you! I have already told them at the center that I will be requesting ice during infusion 2 hopefully minimize neuropathy . ...thanks to all of your advice . I feel great right now so going to the st infusion the 30th is going to really be tough when I have no current pain nor to I feel sick. I know I've been in denial giving how amazing I feel currently .
Any advice on how to deal with no sleep ? My mind races all night long . Since my pathology report I sleep only 2 hrs if I'm lucky a night. During the day I keep mu self busy to minimize my thoughts. Nights are hard. I just started taking Ambien 2 nights ago...unfortunately it isn't helping
Though I know the hair loss will be traumatic for me as you said Life is more important than hair . I'm happy to say that I meant this most wonderful beautician via the center I'm going to . She invited me to her Salon for a consultation . She helped me choose a hair color and wig that would best match my current hairstyle. To say she is an angel would be an understatement! Yesterday I went to pick it up and she also gave me a makeup lesson and how to apply my eyebrows. What a blessing she is! It will definitely take some time to get used to it. I'm going to miss my own long hair for sure but I'm grateful to have been able to get it prior to my hair loss.
I have gotten a beanie and a headband that has a ponytail and side whispes to where under my baseball cap. My son and I are big baseball fans so wearing a cap and ponytail will be familiar . I don't plan to leave my bedroom in the a.m without it post hair loss , much like your daughter he would deviated to see me with no hair ,
Sounds like your hair has grown back very pretty ! And so relieved to hear it will come back faster than I think it will .
When should I be expecting that I'll loose my eyebrows and lashes ? That's another big breath I can't swallow.
Stay cool in the Texas heat!
Warmly Michelle
my doctors is to keep a daily diary of my side effects, times I took the anti-nausea and record diarrhea, any vomiting etc. This was really helpful to catalogue everything and it helped me and the doctors to see the progression and severity of the side effects. So I know that I had constipation, then after a few days, diarrhea. I knew when the bone pain started and when it stopped. Same thing with the neuropathy. I also recorded all of my glasses of water each day. Appetite, anything that I thought was notable. By the third chemo, I knew when each side effect would begin and it helped me to mentally prepare, or note that the particular side effect was less or more than the previous infusion. I had quite the record by the time I was through, but it was worth the effort and helped me get through. I, too, was too sleepy to do much else than keep warm. I brought a really comfy small fleece blanket. I finished my chemo in late October and I was cold all the time, even with sweaters, thick socks and a stocking cap with thinsulate. That lasted all winter. Hope you get some sleep!
Denise
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Hi Denise,BluebirdOne said:Michelle, another thing I was told to do by
my doctors is to keep a daily diary of my side effects, times I took the anti-nausea and record diarrhea, any vomiting etc. This was really helpful to catalogue everything and it helped me and the doctors to see the progression and severity of the side effects. So I know that I had constipation, then after a few days, diarrhea. I knew when the bone pain started and when it stopped. Same thing with the neuropathy. I also recorded all of my glasses of water each day. Appetite, anything that I thought was notable. By the third chemo, I knew when each side effect would begin and it helped me to mentally prepare, or note that the particular side effect was less or more than the previous infusion. I had quite the record by the time I was through, but it was worth the effort and helped me get through. I, too, was too sleepy to do much else than keep warm. I brought a really comfy small fleece blanket. I finished my chemo in late October and I was cold all the time, even with sweaters, thick socks and a stocking cap with thinsulate. That lasted all winter. Hope you get some sleep!
Denise
Hi Denise,
Keeping a daily diary sounds like a great idea ! Thanks for the suggestion!
Michelle
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HI Armywife,Armywife said:Ice and Eyebrows
Michelle, I used plain old cold packs from Target. I didn't want to spend the money on the mitts and booties from amazon. I wrapped the cold packs in kitchen towels and secured with a rubber band. It looked like the Beverly Hillbillies but it worked! Ice is your friend! Also, I think I saw on another post where you or another new member were asking about what to do during infusion. The benadryl will give you a nice drowsiness. By the time you relax under the warm blanket, doze a bit, have some snacks and plenty to drink, and chat with the nurses and fellow patients, the day goes pretty fast! I made great friends in the chemo room. Never even had time for the tv, but there was one right in my cubicle. I had a tote bag full of books and pastimes, and never messed with it - did sort of paw at my phone scrolling facebook though.
I was a failure with eyebrow pencil, but found a brow stencil and powder worked great for me - and I still use them to enhance my brows, which came back a little thin. Eyelashes came back before I knew it and are even longer now, wlthough there are a couple of thin spots on my bottom lashes. Nothing some good mascara can't help with.
Port surgery is not bad. You'll be awake but sedated. I felt a little pressure. You've got to keep the incision dry for a few days and also avoid putting your arm up over your head for a couple weeks so the tube can "seat" well in your vena cava. Your chemo nurse may give you some lidocaine gel to put on so you don't feel the little pinch when they access your port, but honestly I don't even bother with the gel anymore for my monthly port flushes - it doesn't even hurt.
HI Armywife,
Thanks for letting me know about what u got for ice packs. I will pick up a bunch of those. Did u secure them to your hands and feet with the rubberband? How often should I do that?
I did get an eye brow stencil and brow powder. Hoping I can create brows better than anticipate when the time comes.
Port placement surgery Thursday. Very anxious about that too so thanks for letting me know it isnt bad.
How long after chemo treatment do they leave it there?
Michelle
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My eyebrows and eyelashesFeelingalone74 said:Hi ArmyWife, Thank you for
Hi ArmyWife, Thank you for your inspiration and sharing your journey . You've all been so kind and it's helpful to talk with you all whom really understand what it's like . Hearing that's it's going to be ok warms my very anxious heart!
I'm relieved to hear that I won't die from the 1st infusion because of course that's what my fear is and not knowing how my body will tolerate it. I'm so sorry that you had difficulty with your first infusion! I'm glad it got better for you! I have already told them at the center that I will be requesting ice during infusion 2 hopefully minimize neuropathy . ...thanks to all of your advice . I feel great right now so going to the st infusion the 30th is going to really be tough when I have no current pain nor to I feel sick. I know I've been in denial giving how amazing I feel currently .
Any advice on how to deal with no sleep ? My mind races all night long . Since my pathology report I sleep only 2 hrs if I'm lucky a night. During the day I keep mu self busy to minimize my thoughts. Nights are hard. I just started taking Ambien 2 nights ago...unfortunately it isn't helping
Though I know the hair loss will be traumatic for me as you said Life is more important than hair . I'm happy to say that I meant this most wonderful beautician via the center I'm going to . She invited me to her Salon for a consultation . She helped me choose a hair color and wig that would best match my current hairstyle. To say she is an angel would be an understatement! Yesterday I went to pick it up and she also gave me a makeup lesson and how to apply my eyebrows. What a blessing she is! It will definitely take some time to get used to it. I'm going to miss my own long hair for sure but I'm grateful to have been able to get it prior to my hair loss.
I have gotten a beanie and a headband that has a ponytail and side whispes to where under my baseball cap. My son and I are big baseball fans so wearing a cap and ponytail will be familiar . I don't plan to leave my bedroom in the a.m without it post hair loss , much like your daughter he would deviated to see me with no hair ,
Sounds like your hair has grown back very pretty ! And so relieved to hear it will come back faster than I think it will .
When should I be expecting that I'll loose my eyebrows and lashes ? That's another big breath I can't swallow.
Stay cool in the Texas heat!
Warmly Michelle
My eyebrows and eyelashes lasted a little longer than the hair did, not completely going until about round 4-5. I gave up on the eyebrows and just used a smoky gray pencil all the way around my eyes to compensate for the lack of lashes. Since that approximated my pre-chemo makeup routine the diference wasn't as noticeable --- or so I told myself. You will want to be prepared for grit in your eyes and a drippy nose due to loss of nose hair, though. It was funny to be reminded that hair is there for a reason; I had a newfound appreciation for it after chemo was over.
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Ice and BrowsFeelingalone74 said:HI Armywife,
HI Armywife,
Thanks for letting me know about what u got for ice packs. I will pick up a bunch of those. Did u secure them to your hands and feet with the rubberband? How often should I do that?
I did get an eye brow stencil and brow powder. Hoping I can create brows better than anticipate when the time comes.
Port placement surgery Thursday. Very anxious about that too so thanks for letting me know it isnt bad.
How long after chemo treatment do they leave it there?
Michelle
M, I took a cooler with ice and the icepacks. They do make really cool ones with elastic straps that you can strap on if you're not into the redneck look! I got one of those last year after I broke my ankle and a pt recommended it. The brand is elasto-gel and I got it on amazon. It wouldn't stay cold long enough for a full infusion day, though. My infusions were shorter because I had taxotere instead of taxol after the first chemo. So with the cheap icepacks, I folded a kitchen towel over mine and then just wrapped it around my hand/foot and secured with a big rubber band. I started right before infusion and changed when they didn't feel cold. Helps if you have someone nearby to help with the second hand once the first one is bundled.
I still use my stencil and brow powder daily - they give my old face a little perkiness! I noticed a change about a year after the hysterectomy - my skin lost a lot of elasticity.
Doctors will differ about the chemo port longevity. My doc insisted on 2-3 years after finishing treatment. Some ladies have gotten theirs out right after treatment. I plan to get mine out in October at the 2-year mark if I get a clear PET scan. The nurse who does my port flushes every 5 weeks says you can keep them 20 years if you want, and she recommends it because it's such a pain to have to have another port surgery if you need another. I don't mind the flushes a bit, but I also live less than 5 minutes from our hospital so it's easy.
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HI Armywife, I don't mindArmywife said:Ice and Brows
M, I took a cooler with ice and the icepacks. They do make really cool ones with elastic straps that you can strap on if you're not into the redneck look! I got one of those last year after I broke my ankle and a pt recommended it. The brand is elasto-gel and I got it on amazon. It wouldn't stay cold long enough for a full infusion day, though. My infusions were shorter because I had taxotere instead of taxol after the first chemo. So with the cheap icepacks, I folded a kitchen towel over mine and then just wrapped it around my hand/foot and secured with a big rubber band. I started right before infusion and changed when they didn't feel cold. Helps if you have someone nearby to help with the second hand once the first one is bundled.
I still use my stencil and brow powder daily - they give my old face a little perkiness! I noticed a change about a year after the hysterectomy - my skin lost a lot of elasticity.
Doctors will differ about the chemo port longevity. My doc insisted on 2-3 years after finishing treatment. Some ladies have gotten theirs out right after treatment. I plan to get mine out in October at the 2-year mark if I get a clear PET scan. The nurse who does my port flushes every 5 weeks says you can keep them 20 years if you want, and she recommends it because it's such a pain to have to have another port surgery if you need another. I don't mind the flushes a bit, but I also live less than 5 minutes from our hospital so it's easy.
HI Armywife, I don't mind the redneck look. I always tell my husband he's a redneck so I'll fit it in LOL..he will be going with me so he can help wrap. I will look up the elas to get on Amazon to maybe have fir the 2nd infusion.
I'm sure your face looks beautiful still!
Oh wow. That's something I didnt ask in regards to the port. I just assumed it would be taken right out after treatment was finished .
The hospital and center is only 15 min from house so going for flushes won't be too much of a hassle.
We'll all celebrate you in October when u get your clear petscan!
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HI derMaus, I'm sure yourderMaus said:My eyebrows and eyelashes
My eyebrows and eyelashes lasted a little longer than the hair did, not completely going until about round 4-5. I gave up on the eyebrows and just used a smoky gray pencil all the way around my eyes to compensate for the lack of lashes. Since that approximated my pre-chemo makeup routine the diference wasn't as noticeable --- or so I told myself. You will want to be prepared for grit in your eyes and a drippy nose due to loss of nose hair, though. It was funny to be reminded that hair is there for a reason; I had a newfound appreciation for it after chemo was over.
HI derMaus, I'm sure your smoky gray eyebrows are beautiful!
Hoping with practice and time I'll get use to my soon to be new look. I keep my eyebrows thinner than most so hopefully with some brow powder or brow pencil it looks tolerable to me.
Oh boy grit in eyes and ruby nose...does that last until your hair grows back?
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Around here they say they
Around here they say they want you to keep your port at least a year after your last treatment, but one of my friends got hers out as soon as she finished treatment - three different times! I think they're going to want me to keep mine because I still don't have clear scans.
My eyebrows and eyelashes also hung on - I think they departed after the fifth full dose treatment, but they did start to come back fairly soon. And my husband, looking at me one day shortly after my hair went south for the summer, said, "You sure do have a pretty head." It's funny how you do get used to it. I did fairly well with the eyebrow pencil but that was in the hot part of the summer and they didn't last. Should have tried a stencil - maybe I will if I have to do it again.
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My husband said the same thing.
He never wanted me to stop coloring my hair because he thought I would not look good with grey, white or salt and pepper. The hair fell out and he was amazed at how nicely shaped my head is, which is an odd compliment if you think about it. For a while my one year old granddaughter and I had the same look, nicely shaped heads, no hair! Who knew? Now not only does he love the short pixie, he loves the color. I had never seen the actual color of my hair because I always colored it so it was a pleasant surprise that it is actually a nice look. My brows thinned but never went away, now they are almost 100 white! Lashes were sparse before, now still sparse. I keep thinking I need to post a new photo of what I look like now. People who have not seen me in a year just stare, which is disconcerting, but it is certainly a dramatic change from my old dark haired straight bob.
Denise
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