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Treatment 1 Done...thanks to u all getting me through it!

Feelingalone74
Posts: 236
Joined: Jun 2019

I can't thank you all for helping me get through my first treatment! Thanks to all your support and encouragement as well as what to expect I was able to walk in the Center and receive my treatment. Not to say there wasn't many tears out in the parking lot. And a plea with my husband to take me to the ocean and not inside. He said he would take me anywhere I wanted to go but we both knew where we needed to be so reluctantly we walked in together hand and hand.

As many of u said treatment day should be as comfortable as possible.The nurses were all sweet. I wish I could have slept through it but to the nurses surprise the Benadryl unfortunately did not help me sleep. The day went by faster than we anticipated though we were there 7 hrs.  I tried not thinking about the treatment dripping into my body. 

I was sure to ice though they said there is no science behind it working. I told them about all of u have said 1st hand that it helps minimize the neurapathy. 

I was happy when my husband could finally take me back home. Our door yard never looked so good! 

We had dinner,relaxed and I SLEPT 5 OR 6 HOURS. BOY THAT FELT GREAT!

Day 1 home I felt great....until 5 p.m . Then my body said ok I'm tired now. Prior to that I went for a short walk, local vegetable stand, made zucchini bread and visited a neighbor. By dinner time I was tired and started feeling cramps in my leg. Ice and elevated it . Helped.

Day 2 Very tired today! Slight tingling in left hand in the a.m. but as the day as gone on it subsided. 

No nausea as of yet and hoping it stays away!

Many emotions and wonder what to expect next followed by moments of calm. It's a roller coaster ride for sure and I've never been one for roller coasters.

This staying out of the sun is hard and not being able to do all the things I enjoy and not having the strength to get all my usual tasks done is hard. I long for my life to be back to normal but the treatment is going to be until December and then I realize once it stops my body will need much recooperating.  Still scared of how my body or anyones body can tolerate all the treatment . Hoping to get through it all and feel good and be NED!!!!f

For today I'm thankful for only feeling tired. 

Again thank you all for your support, encouragement and advice! It has meant the world to me!

Warmly, Michelle

Fridays Child
Posts: 81
Joined: Jul 2019

Good for you!  Now you've made it through the first one and maybe the next one won't be so scary.  Hang in there!

Feelingalone74
Posts: 236
Joined: Jun 2019

Thanks so much Fridays Child! 

I hope so!

Warmly, Michelle 

MAbound
Posts: 889
Joined: Jun 2016

You got through the first infusion day, but there is still the next week to get through. I always likened it to going down into a well for a few days before I climbed out again. Going into the well began when I started to notice that my vision or balance seemed a bit off-kilter and I needed to go lay down. The fatigue would get progressively more pronounced with subsequent infusions, but I tried to stay awake during the day so that I could sleep at night when I needed to. As things progessed with subsequent infusions, there were times when just sitting in a recliner chair all day was exhausting work. I felt like I weighed a million pounds, but I was at least able to be company for my husband who worked from home to help me through this. 

ZzaZa's right about the first infusion possibly being the hardest as far as the potentially painful side effects can go. I suspect it's the body's initial shock to being exposed to this stuff. Still, let your care team know about it. Don't suffer in silence, but take heart that subsequent infusions will probably go better except for the increasing fatigue and potential need for Neulasta or transfusions. 

Getting past the whammy that an infusion hits you with feels like climbing out of the well and back into the daylight. It's a real relief until you have to do it again. Use that time to enjoy doing what you want to do or prepare for the next go-round. It's hard to go through this six times, but keep your eye on the prize at the end of the tunnel and keep telling yourself that you can do this because you don't have to do it forever.

 

Feelingalone74
Posts: 236
Joined: Jun 2019

Thanks MAbound! I will definitely listen to my body and rest when needed. Not looking forward to the "well" effect in the next  week . I certainly will keep my care team informed of any changes I experience. Praying for minimal side effects but know it's one day at a time to see how my body u is responding to treatment.

Yes, knowing I wont have to this forever is what I'm trying to tell myself but still wondering how I'll get through the next 5 months. Keeping an eye on the prize and counting down until this is all over. Still is all surreal  .

Warmly Michelle 

 

 

zsazsa1
Posts: 356
Joined: Oct 2018

Hang in there, Michelle.  I'm hoping for your sake that this was the worst of it for you.  For me, the "fun" started about 48 hours after the infusion was over - so by evening of day 2 post-infusion, I was getting sick.  I had my infusions on Fridays, and Sunday nights were the hardest.  I spent most Sunday evenings through Wednesday/Thursday holed up in a bedroom (I have a teenage son at home - I didn't want him to see me suffering), trying to escape the severe body aches and nausea by sleeping as much as I could.  While awake, I distracted myself with watching TV series on Netflix, Amazon, or PBS.  The first round, I started to feel better on Thursday.  By the weekend, I was much better.  If you are not having severe body aches or severe nausea at this point, 48 hours out from treatment, I think that it's a very good sign that it may not be as bad for you as it was for me.

I had pulling and tingling sensations in my hands and feet after the first infusion, but not so much with the rest of them.  I iced my hands and feet throughout each infusion.  Was left only with numbness in the sole of the ball of one foot, nothing in my hands and the other foot.  I think that the problem for me was the ball of my foot resting against the bottom of the plastic container that was filled with ice water - I would fall asleep during the treatment, and then my foot was essentially resting against the warm floor, through the plastic.  We considered nesting the plastic container in another container with a cold pack between the two containers, but I wound up declining the last dose of Taxol.

After my 5th treatment, I had three very sharp sudden stabbing pains in a row in my big toe on the foot that developed the numbness on the sole.  They felt exactly like being stabbed with an ice pick.  I decided that I could not accept the risk of permanent neuropathy like this for the rest of my life, so I declined the Taxol in the 6th round, and only had Carboplatin that round.  I only very, very rarely have a stabbing pain in my toe - maybe once a month or two - just enough to remind me that declining that last dose of Taxol was probably the right choice for me, because others have reported that painful neuropathy is the worst persistent side effect that they have had, after having gone through chemo.

I'm hoping that by now you too are realizing that chemo is "doable", and that you can get through it.  I'm glad for you that it  sounds as if you have a wonderful, supportive husband.  I don't know how I would have gotten through chemo without my husband's support.

Hang in there.  The weeks in between infusions are not that bad - my quality of life during chemo was pretty good, after the first week after the infusion.  I'm hoping yours will be even better.

Feelingalone74
Posts: 236
Joined: Jun 2019

Thanks so much zsazsa1!

Sorry to hear that u were so nauseous and had such pain from the neurapathy! I can understand u not wanting your teenage son seeing u like that. My 22 year old lives at home still , though he's gone most of the day working.  I know he's very worried about me so I'm trying to be rested for when he is home so we can have some sense of normalcy. 

Boy that Taxol seems so harsh! I wish there was something else they could give us all instead of that! I'm glad your pain has minimized and that u followed your body's instincts. 

I'm hoping your right about me getting through the 1st 48 hours with little side effects is a good sign. And yes now that I got through the 1st infusion hoping the next wont be so scary for me and see it is doable as u all noted.

DAY 3 Waking up wishing I had slept more ,tired,  but hoping to get a small walk in before the sun gets any hotter.

I'm glad your 1st week after infusion you had a good quality of life!!!! I'll hang in there and pray for the same for myself !

I keep telling my husband I just want things to be normal again. So grateful for him!  I'm glad to hear u had a supportive husband as well.  

Wishing all u ladies good health and a blessed day!

Warmly, Michelle 

Armywife's picture
Armywife
Posts: 325
Joined: Feb 2018

I'll add my voice to those above - the next few days will likely be difficult, but please know this - that will lift, and soon after that you'll feel pretty good!  By week 3, I was feeling better than good!  Just know that this is all normal and expected.  Some down days, then better days.  Infusion day is not an "unknown" to you now, so that will be less anxiety-filled.  Keep on icing!  Drink tons and tons of water to flush out that stuff after infusion, and rest as much as you want to.  Your body does its best healing during rest.  Proud of you!

Feelingalone74
Posts: 236
Joined: Jun 2019

Thanks so much Armywife! Yes , I did thanks to u and everyone else who kindly walked me through the beginning of this journey.Glad to know any discomfort I may experience in the next few days will lift!!!I've been drinking tons of water but I better ice more. So far just tired so I'm resting a lot. Doing things when I can just to keep my body in motion a bit. 

Thanks for all your support as well as everyone else! Thank you for being proud of me! The encouragement I'm receiving will keep me moving forward. 

Yes, hoping now each infusion day will be less anxiety for me now that I know what to expect. Thanks for keep telling me I was going to be ok!

Warmly, Michelle 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Congrats on getting through your first chemo Michelle! It sounds like you may be one of the lucky ones and your body is going to tolerate it well.

I know we all hate the thought of chemo and feel like we are sending poison into our bodies.... Try to think of it as your friend fighting off that beast that is trying to take over your body.

You absolutely can and will get through the next 5 months! And, you will find your normal. You will also learn that things that seemed so darn important before, just really aren't. It is a bit like gaining some additional freedom in our lives.

Take care, remember to rest. Remember to walk. Remember we are all here for you.

Love and Hugs,

Cindi

Feelingalone74
Posts: 236
Joined: Jun 2019

Hi Cindi, thanks so much! It was a hard step to take but I did it. As I said the support and encouragement from u all helped me tremendously! I kept reminding myself during infusion as u said it's my friend that's going to make me better though my 1st thought is calling it poison. 

I'm hoping you're right....so far my body seems to be tolerating it.

Thanks so much for saying that I will absolutely get through the next 5 months! It seems like an eternity away but looking forward to getting my normal back and especially my freedom. 

I'm resting when I have to and really wishing I could walk more as I use to walk 3 miles a day. I'm been taking a little one around the block when my body allows me to. Hoping the tiredness demishes so I can have more energy.  But I know this is a 1 day a t a time deal.

So thankful that you're  all hear for me!

It's so much easier to talk to u all than my family whom I love but might not understand like u all do. 

Love and hugs to u as well!

Warmly, Michelle 

zsazsa1
Posts: 356
Joined: Oct 2018

Oh that is so true!  I went to a psychologist so that I could talk frankly and openly to someone about my fears of dying and leaving my family.  Of course, I couldn't talk about that to my husband or children.  You might want to consider seeing someone.

Feelingalone74
Posts: 236
Joined: Jun 2019

Yes you are right zsazsa1 I really need to consider seeing someone. They have someone at the Center I go to and I keep saying I need to make an appt.  I've talked to their social worker 2x's but I get the feeling she is just there to listen .

Warmly, Michelle 

janaes
Posts: 783
Joined: May 2016

Feelingalone, i have been thinking about you alot the last couple of days. Im glad your nurses were nice and good to you. It makes a difference. I didnt sleep on my first chemo either. The next few i did. I always felt good the day of chemo so that was the day i went out to eat with my dad. I could always count on a good meal.

Im glad you are done wirh your first chemo. Way to go!!! 

Feelingalone74
Posts: 236
Joined: Jun 2019

Thanks so much janaes for thinking of me and for your encouragement so appreciate it! I'm glad I'm done with the 1st treatment as well. Now I can count down until the last.

I agree , the care u receive definently makes a difference. 

That's really nice u and your dad would always go out to eat with your dad the day of your chemo.

I should plan a dinner date on mine...good company and good meal while feeling ok will do the soul good! 

Warmly, Michelle 

MAbound
Posts: 889
Joined: Jun 2016

My husband always took me out to Panera's for a meal after infusions. It was usually mid-afternoon, so we'd have the place pretty much to ourselves. A little outing in the midst of things is good for one's morale. I pretty much went for the glass of lemonade I'd have there. If sugar made the little beasts more active for the chemo to target them, it was good timing to have it.

Feelingalone74
Posts: 236
Joined: Jun 2019

Mabound, mmmmm Panera! That sounds really nice that u always went there with your husband after infusion day!

Thanks for the lemonade/sugar  tidbit. I didnt realize that sugar would make the best more active and good for targeting. 

I feel like though the Center is a nice place they could give me more info. 

Thank you 

Warmly, Michelle 

Feelingalone74
Posts: 236
Joined: Jun 2019

Hoping all u special ladies had a super Saturday!

Warmly,  Michelle 

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Yea!   You made it through your first treatment.   I found out with my treatment that two days later I just would get totally exhausted.   It hits quick and I have to Stop and rest for the day.  My husband would take me for rides in the car which also helped. Gets some popsicles too.  That can help if you get a metal taste in your month.  

Hang in there!    Hugs!

Kathy

Feelingalone74
Posts: 236
Joined: Jun 2019

Hi Kathy, thanks so much! Yes, that was me too 2 days later. Very exhausted and tire easily. Wishing I'd sleep instead of just resting but being tired is tolerable. 

Its amazing how the small stuff like getting out for a car ride  can do for the soul. Not to mention everything looks so prettier to me now. Being home and not working is hard for me. I was grateful yesterday and today for my husband getting me out for a ride. 

Hugs to u as well!

Warmly, Michelle 

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