Dis Breast Cancer Survivors Part IV - GAGWTA

[leebee]

@Pea-n-Me I am so sorry to learn of your diagnosis. You have been such a huge help and support to the folks on this board. I hope the chemo side effects ease up in the weeks to come. Know that we are all thinking of you and holding you in our hearts.

 

[Pea-n-Me]

Thank you everyone for your good wishes, I really appreciate them!

Pea-n-Me - sending you all my best. You have a great attitude and support team. Your retail therapy sounds perfect. Sorry about all the side effects. I remember years ago I think you said you were having kfc mashed potatoes? Sending prayers and a big virtual hug.
The cold cap. Ds3 friend had it. Only her husband could touch or help her. She has long red hair and really didn’t lose any. Of course her ins. didn’t pay for it. They were very happy with the results. This is the girl whose baby was 3 months old when she was dx.

I’m glad to hear the cold cap worked for her! My insurance didn’t pay, either, I had to get everything myself and bring it in a cooler with dry ice! But so far so good, hair is still intact. We’ll see how the week goes. I also had to keep the icy booties and mittens on during chemo. My hands lasted about five minutes before I had to take them out for a bit, then I rolled up my hands so my fingers were under my palms and put them back in. The feet didn’t bother me. And the cold cap wasn’t too bad. The hands were the worst. Plus, keeping your hands in mittens also limits what you can do. Didn’t love that but trying to go with the flow.

It wasn’t me with the KFC mashed potatoes, I don’t think, but I’m kinda liking the idea! Soft comfort foods are the name of the game! By the time I started this support group here I was well past my chemo already. The thing I remember being just about the only thing I could tolerate at the end then were potato chips and regular Pepsi (which I don’t usually drink). Chocolate pudding is going down pretty well now, soups, peanut butter on toast, bananas, etc. Trying to maximize nutritional value with as much as I can. My stomach hurts if it’s empty. At least the has slowed now.

I hope you are doing ok, lmp. You’ve had a lot going on. I hope everyone is doing ok.

 

[Grace&Carolinesmom]

Thank you everyone for your good wishes, I really appreciate them!


I’m glad to hear the cold cap worked for her! My insurance didn’t pay, either, I had to get everything myself and bring it in a cooler with dry ice! But so far so good, hair is still intact. We’ll see how the week goes. I also had to keep the icy booties and mittens on during chemo. My hands lasted about five minutes before I had to take them out for a bit, then I rolled up my hands so my fingers were under my palms and put them back in. The feet didn’t bother me. And the cold cap wasn’t too bad. The hands were the worst. Plus, keeping your hands in mittens also limits what you can do. Didn’t love that but trying to go with the flow.

It wasn’t me with the KFC mashed potatoes, I don’t think, but I’m kinda liking the idea! Soft comfort foods are the name of the game! By the time I started this support group here I was well past my chemo already. The thing I remember being just about the only thing I could tolerate at the end then were potato chips and regular Pepsi (which I don’t usually drink). Chocolate pudding is going down pretty well now, soups, peanut butter on toast, bananas, etc. Trying to maximize nutritional value with as much as I can. My stomach hurts if it’s empty. At least the has slowed now.

I hope you are doing ok, lmp. You’ve had a lot going on. I hope everyone is doing ok.

I also had to cycle my hands in-and-out of the cold mitts. I kept my socks on with the cold booties which helped immensely.

I used to take cut up cheese and fresh berries to my chemo infusions. It was like a comforting treat to help pass the time and felt "special." And.....sometimes....Reese's peanut butter cups may or may not have been included.

 

[luvmarypoppins]

I am so encouraged by everyone’s experiences here and everyone’s journey to health and healing. I am seeing how nutrition is so important too. Wishing everyone all the best always,
Pea-n Me - So wonderful your dd is such a big help!
My update - I had eye tear duct surgery 3/26. He said he cleaned out the infection 3 times. Dealt with headaches and nausea post op and also possible copd exacerbation. My sat’s have been 75-90. Maybe the airway got irritated from the anesthesia. Called the pulmonologist and they said May 19’ omg! Dh stopped into office after I got my stitches out and now I am seeing him tomm.
I have a stent in my eye that runs down into my nose. This will not be removed until end of June?
And not to have my body be outdone my l lymphedema leg has been weepy at times. Loading up on the lasix.
Last but not least the gastro stuff of dealing with months of antibiotics and now none.
The onc. has decided to hold off on the chemo due to all these issues and the good news was there is no new bone cancer growth seen on the mri in the sacrum area that was radiated.
GAGWTA

 

[Dan Murphy]

Good thoughts, @luvmarypoppins, along with continued prayers, travel with you. And with those boys of yours too.

 

[Grace&Carolinesmom]

lmp - You are rocking the medical wheel of fortune! Your team is solving every puzzle.

Make sure to treat yourself to something special. Whether it's retail therapy, a spa experience, a favorite restaurant or just a quiet day enjoying the beauty of nature. You deserve it.

Sending good vibes and prayers your way.

 

[#1hoosierfan]

Pea - Not sure if I already mentioned this. If I did, I apologize.

My oncologist advised me to not eat anything I truly loved during chemo. He said if I did and got sick, it might turn me against it forever. I was lucky and did not get very sick during my 5 months on chemo. I did drink a lot of blue Gatorade though to help stay hydrated. Three years later, it is still hard to even look at blue Gatorade.....

 

[Pea-n-Me]

Pea - Not sure if I already mentioned this. If I did, I apologize.

My oncologist advised me to not eat anything I truly loved during chemo. He said if I did and got sick, it might turn me against it forever. I was lucky and did not get very sick during my 5 months on chemo. I did drink a lot of blue Gatorade though to help stay hydrated. Three years later, it is still hard to even look at blue Gatorade.....

I developed a negative association with grilled peppers and onions the first time I had chemo. I tried to avoid that this time but I do think I have a couple of things that I ate that the thought of just makes me sick right now. Not even favorite foods, just a couple of things that I’m sure I’m not going to be wanting again for a long time.

 

[Pea-n-Me]

Well mentally preparing for my next chemo this week. Have to start the steroids again and get blood drawn and all that, just as I’m feeling better finally. Oh well, after this I’ll be halfway through.

Lots of my hair started coming out in the past several days. Not enough to make a huge difference in how I look, but enough to make a huge mess in the shower and on the sink, etc. Trying to not wash hair often and am super careful with how I wash, dry and style, etc. I think I might even try to find some hair nets to wear at night so it doesn’t get in my bed. I woke up the other night with scalp pain and a headache. Thankfully it went away later on its own and hasn’t been back yet.

But I wasn’t feeling shaving my head or wearing a wig just yet, so I’m doing the cold cap again and we’ll see how it goes.

 

[Pea-n-Me]

Second chemo went pretty well yesterday. Got a nap in after the IV Benadryl. The cold things on hands, feet and head were uncomfortable, but I had a nice blanket on from home that my friends gave me, and the nurse put a warm blanket over my shoulders, too, which felt nice.

As expected, hair is giving me a run for my money. Still trying to preserve it. But messy. And getting sparse in a couple of areas. I ordered some thick headbands today to see if that will help. And I restyled it a little from my normal style, but the wind is not my friend!

Will get my neulasta shot today and hope the pain from that isn’t too, too bad this time. Stomach issues, so far, are ok. Trying to stick with a bland diet and small meals.

Thanks for your support.

 

[luvmarypoppins]

Pea-n-Me - Thinking of you. Hoping the side effects are not too bad. You are in my daily prayers.
I went to the eye surgeon today. He said everything looks good and see him June 27. Hopefully I will get this stent stuff out then. I told him it’s annoying but tolerable.
Seeing reg. Onc. Next week I think? Hopefully he will agree to hold off on the chemo. I would like to know what the ortho onc. thinks of all this but don’t see him for a month. Little grandson is getting cute. Smiling and giggling.
Wishing everyone a great weekend.
GAGWTA

 

[luvmarypoppins]

Pea-n-Me - Praying you are tolerating the treatment as best you can. You are one tough lady!

I had to go to the eye surgeon for an emergency. Last Fri. Went for a check up and everything was well. Then Mon. after my shower I touched my eye and the stent string was starting to come out through my eye. Glad ds was off. Surgeon said he couldn’t fix it and would have to pull the whole thing out. I think I only screamed once. He said you will feel pressure, Sure! He said good it’s today because I’m going on vacation tomm. So since it came out 6 weeks early we will have to see if that part of the surgery will be successful end of June.
Then Tues was the onc. Visit. They gave me the np instead. I already knew he wasn’t going to be there because ds friends is a float nurse for them. Then the next day onc. Calls me back and said he wants to talk about the blood tests after np said everything was good. Haven’t called him back. I’m just not feeling it lately.
Looking forward to holiday weekend.
GAGWTA

 

[Pea-n-Me]

Sorry to hear about your eye, lmp, and sorry I somehow missed that post. I hope things are better now?

I finished my last chemo yesterday. Thank God. I was really sick a few weeks ago with a bad intestinal infection from the chemo upsetting the balance of my GI track. Always on the . Could barely walk some days, had to sit if I went out or did anything around the house. Thankfully my oncologist recognized it and put me on ten days of antibiotics without my asking. Brought her a nice plant yesterday as a thank you for that. And cupcakes for the rest of the staff, though I also got some flowers earlier for the girl who helped with my leave paperwork, which was a total pain. They don’t have people ring the bell anymore on last chemo as some people complained about it. So I gave hugs and thank you’s and walked out unceremoniously. I remember ringing it last time and it was a nice feeling and end point.

So far I’ve managed to preserve about 50%, I’d say, of my hair using the cold caps (cheap version from Amazon, not the Penguin which I missed out on). There’s a lot of hair in the back so using a thick headband has worked out pretty well. I’ve had people say they thought I was just wearing it for fashion since there’s a lot of hair sticking out the back. I can’t stand looking at it in the mirror and came close to still shaving my head a few times but DH encouraged me to keep going with it since we’d put so much into it. We had to buy dry ice the night each treatment before to keep the ice packs on for it, keep the windows open in the car because of the carbon dioxide, carry the heavy cooler up to the infusion center from the garage along with my big day bag with my blanket and socks and gloves for the cold packs on hands and feet, my religious items I keep with me, and my large notebook I keep for talking with doctors, etc. Along with lunch, lol. DD has been really good helping me and DH came once when she couldn’t and managed pretty well, too (if a little rough). The cold hurts so bad when you first put it on and for about 20 minutes. My hair should start growing back in about a month, hopefully. Debating on having it cut short just before then so it all grows in evenly, but we’ll see. I told staff I’d hold onto the caps and ice packs and if they had someone come in who was invested in preserving their hair but couldn’t afford the Penguin out of pocket, I’d donate my set up to them and show them how to use it, etc. I hope someone takes me up on it. I overheard the staff yesterday saying that most people there had cold caps on.

So now starting my surgical consults. Had first one already and going for second next week, that’s the big one. I have to have a repeat MRI early next week to see what impact the chemo had on my nodes and +/- breast areas (which were super small, three @ 0.1cm each - hard to believe being so small they did so much damage to my nodes). I think I know what I’m leaning towards but I want to get information on everything. Surgery should be within a month whichever I choose. Radiation is likely so at some point I’ll start the consult for that. Going to do it locally rather than traveling into the city which worked out well for me last time. Then there are three meds they’re going to start me on to keep the cancer away. One I guess causes diarrhea so a little worried about that, but keeping my fingers crossed. So a long road but one step at a time. I’ve been compartmentalizing each step so I don’t get overwhelmed and not reading a lot either, since I did that previously and it made me very anxious. This time I already know the basics and I’m relying on my good team of doctors to explain any updates which they’ve been good about doing. Did a little research on surgical options and statistics but that was enough. Some things have improved a good amount. And last time I was triple negative and this time hormone positive so there are more treatment options for the latter. Praying a lot and hoping this is the last time.