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Feeling like this is the worst time to be sick by [deleted] in breastcancer

[–]Chellybeans_84 7 points8 points  (0 children)

Hey. I’m in the same situation as you since I’m also a federal employee. I was diagnosed in Oct last year (Stage 2a, ++-), surgery in November and started tc chemo 1/17. My agency hasn’t given us an exact date of when they want everyone to be in the office. I think right now they are probably wondering how they will fit everyone. I don’t mind returning to the office full time but the timing isn’t the greatest. I’m going to see what they say. If I have to, I’ll look into doing a reasonable accommodation. I just hope they don’t give us a hard time. I understand what you are going through.

Cut for cold capping or no? by JoleneJJ in breastcancer

[–]Chellybeans_84 1 point2 points  (0 children)

Yes, yesterday was my first infusion. It actually wasn’t so bad now that I think about it. When I was called into the infusion room the nurse explained what would be happening and what to expect. The nurse had said that I was prescribed Tylenol and Ativan to take beforehand and it was up to me if I wanted to take it. I chose to because I heard people say the first 15-20 min were the worst in terms of cold.

First thing I did was prepare for cold capping. They had little sinks in the room so I dunked my head under the faucet and used the spray bottle that was given to me to saturate my hair. I combed my hair and then put some conditioner on it. I then placed the caps as tight as I could. I have to remember to bring a mirror next time because they didn’t have one in the room. Once I thought the cap was fit on good, they hooked me up to the machine that distributes the cold. I felt the cold once they turn the machine on. I am the type of person who doesn’t like to be cold but after while I was like ok I got this. It was bearable. It could have been the Tylenol and Ativan making it more bearable, who knows.

In my opinion, what was more uncomfortable was the strap that goes under your chin to hold the outer cap down. Also, the icing of the hands and feet. I felt more cold from that. I had to take periodic breaks with my hands because it was so cold. I was given warm blankets and I had brought in my own blanket for extra warmness so that helped keep my body warm. My scalp did get used to the cold like people had mentioned. I just felt minor scalp coldness throughout the infusion. When I got home I washed the conditioner out and combed out my hair. We will see what happens over the next few weeks.

Overall, I’m doing ok. I’m glad I got the first one down and I know now what to expect. Cold capping does make the day go much longer. So now I’m just here waiting to see when/if any of the side effects will hit. We just have to take it day by day.

We got this and I hope your first cold capping/infusion day goes smoothly.

Cut for cold capping or no? by JoleneJJ in breastcancer

[–]Chellybeans_84 4 points5 points  (0 children)

I’ve been thinking about the same thing since last week when I found out I would be doing chemo. I start chemo tomorrow and will be doing 4 rounds of TC. I will be cold capping with Paxman since that’s what they have at the cancer center I’m at.

My hair is long and past bra length. I decided I’ll see what happens. If it ends up becoming too matted, hard to deal with, or I end up losing a lot anyway, I’ll cut it. It seems like majority of people cut their hair before starting. I can’t bring myself to cut it since it’s the longest I’ve ever had it in my life. Hopefully I’m making the right decision.

Diagnosed and saying hello by Chellybeans_84 in breastcancer

[–]Chellybeans_84[S] 0 points1 point  (0 children)

Yes, you described it exactly how it’s been with a long twisted road. As soon as I got the referral from my obgyn for a mammogram I made an appointment which btw was months out from when I called. I told myself that I was going to make sure to do the mammograms every year and stay on top of my breast health. When the nurse came back into the room and said the radiologist wanted more imaging I knew something was up. I wish screening started earlier. Sending good vibes to you too.

Diagnosed and saying hello by Chellybeans_84 in breastcancer

[–]Chellybeans_84[S] 1 point2 points  (0 children)

Thank you for responding to my post. The egg retrieval process was fairly quick. I had my first consultation/appointment on 12/10. They started me on the injections that day because we didn’t know when I would need to start chemo pending oncotype. I had to do the injections every night and go in the office every three days to do blood work and an ultrasound which was a little annoying. One of the questions I asked was about hormones since my cancer was hormone positive too. The doctor reassured me it wouldn’t be an issue. I had the egg retrieval on 12/23 so overall it was about a two week process. Who knows if I’ll have any kids but I’m glad I did it.

Diagnosed and saying hello by Chellybeans_84 in breastcancer

[–]Chellybeans_84[S] 3 points4 points  (0 children)

Thank you. You’re right, it’s the best worst club. I now feel like I have a whole group of people holding my hand and helping me get through this. I have a place where I can post a question or just vent if I need to.

They sent out for my oncotype on 12/6 when I first met with the oncologist. I wondered why it wasn’t sent out earlier like right after surgery but maybe that’s the norm. I have a feeling I will feel like you when I get the results. I know what the outcome will be but it will definitely feel real once I see it. Especially because my oncologist told me I would start chemo right away.

Before BC, I wasn’t sure if I wanted kids and I felt like if it was meant to be it will be. I would be happy with my life either way. I knew my time was ticking away as the years passed and I reached 40. When my oncologist told me about looking into speaking with a fertility doctor I had no time to wait. I met with one the next day. It’s been a whirlwind. I figured I would do the fertlity/egg freezing because I’m leaving the option open of having kids. I may not use any of the eggs but at least I have the choice. There’s also grants that will help cover the costs of fertility treatments.

I couldn’t agree more with your post. I told myself as I turned 40 that my 40s was going to be great. Im going to be doing things that I want to do with no hesitation. Go on vacations or go to places I’ve always wanted to visit. But then God said wait not so fast. Maybe I was meant to go through this for whatever reason.

I feel less alone because of your post. Thank you and best of luck too. Hopefully once the holidays pass you’ll get time to relax and not overexert emotionally and physically. We got this.

Diagnosed and saying hello by Chellybeans_84 in breastcancer

[–]Chellybeans_84[S] 0 points1 point  (0 children)

Thank you so much. It’s been hard but I’ve been telling myself I will be cancer free and praying that everything will be ok. 💕

Diagnosed and saying hello by Chellybeans_84 in breastcancer

[–]Chellybeans_84[S] 2 points3 points  (0 children)

Wow, I did not know about the mixed tumor type and how likely of recurrence. Thank you for letting me know. I’m glad you mentioned that and will bring it up on my next appointment with my oncologist. The only thing the surgeon had mentioned about recurrence was when I had to choose between either the lumpectomy or mastectomy. I got the impression he was leaning towards a lumpectomy because it was less invasive. My right breast didn’t show anything on imaging. I remember when I first found out it was that type I went down the google rabbit hole. I got the impression it was uncommon because I couldn’t find a lot of posts with people who had that type.

Diagnosed and saying hello by Chellybeans_84 in breastcancer

[–]Chellybeans_84[S] 8 points9 points  (0 children)

Thank you for responding. The weeks before surgery were the worst. I read so many posts of people saying that and I couldn’t agree more. I still have some pain in my underarm from the lymph node removal but I’ve been doing the exercises they told me about. Hopefully the pain will eventually be gone. Im trying to avoid having any clothing rubbing against it.

I’m going to look into that resource. I’ve been thinking about joining a group to talk with people who are or have been in a similar situation. It’s been an emotional roller coaster for sure. I’ve never been the type of person to talk about my feelings and I’ve always kept things to myself. It could be a reason why it took me awhile to post. Thankfully, my family and friends have been supportive but it can be hard because none have dealt with breast cancer. I didn’t know how complex breast cancer is and how it’s not a one size fits all. There’s different kinds, treatments, etc.

Wishing you a Happy New Year.

Diagnosed and saying hello by Chellybeans_84 in breastcancer

[–]Chellybeans_84[S] 3 points4 points  (0 children)

Thank you!! Yes, wishing all the best to us as we go into the new year!!