Chemo and the sun

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.

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. 

BluebirdOne 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.   

Feelingalone74 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.

Feelingalone74 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 

Feelingalone74 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.

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