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a lurker saying hello

pipscout
Posts: 23
Joined: Jul 2010

hello,

i have been reading at this discussion board for a few weeks, and i want to thank everyone here. when i had a question i just searched the threads and it has been reassuring to know that other people have already weathered or are weathering similar things.

i have endometrial cancer, a grade 3 tumor. it is considered unstaged because they weren't able to sample the lymph nodes during my surgery. there had been a little bit of spread into the fallopian tubes. so, they are treating it as though it might be a higher stage. so, chemo for now. and i have a consultation coming up with the radiological oncologist.

i had a hysterectomy in june with the davinci machine. so, my recovery was uncomfortable but not quite as tough as other people's. i am a large person so i was worried about how the surgery would go and how i would recover. but i am mostly comfortable nowadays so i'm grateful for that. i'm also grateful that my uterine problems are gone. i had become anemic and had to have two transfusions because of so much hemmoraghing over the previous months. i'm so glad that part of my life is over with.

i had my first chemotherapy treatment a few weeks ago, my second will be this week. i felt kind of yucky the 2 to 4 days after my first treatment but mostly okay since then. the only thing right now is that my scalp has been very tender for a few days, and today every time i touch my hair some of it comes out. i am thinking around the end of this week i'll see the hair stylist who gave me my pixie cut. do people recommend buzzing the hair, or shaving, or clipping? i know it's going to be a little sad and weird. and i'm kind of nervous about looking like uncle fester for 6 months! : ) friends and family have been giving me some cut hats, scarves etc so i'll see what feels comfortable.

i've been seeing an acupuncturist too recommended by some friends who works with a lot of people in treatment. i don't really know how it works but i figure it cannot hurt. she is also a very calming person who reminds me to take it easy.

i've been back to work for two weeks now, and i'm going to try to work as long as i feel comfortable. washington state doesn't have any short term disability so it's just my leave time (about one and a half days a month), and then donated leave from coworkers. luckily i have a mostly desk job and have also gotten permission to do some work from home if i just don't feel up to coming in. i usually travel quite a bit for work but they took me off of the schedule for the fall and are giving me some other projects to do.

one feeling i've had through all of this is so much gratefulness. i have two young adult daughters who i always thought were great, but it's like their thoughtfulness has just shone through this. and other family and friends who have reached out. and then places like this where people are willing to share. you have helped me so much without even knowing i was here. i'm sure your words do that for a lot of people.

warm thoughts.....teresa

llight
Posts: 99
Joined: Feb 2010

Hi Teresa,

So sorry to hear about your diagnosis. But I'm glad to hear you are getting so much support and caring. That is wonderful. Sounds like you are doing well and have been doing lots of research to help you get through this time. Going into chemo armed with knowledge definitely makes it easier. I'm so glad prior posts have been helpful to you.

Hang in there and know you will get through this. The people on this board are great and I encourage you to post whenever you feel the need.

Best to you,
llight

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi Teresa,

I’m glad you joined the conversation. I was diagnosed with Stage 3, Grade 3 endometrial cancer (papillary serous) about 2 years ago and went through chemo. I, like you, continued to work a regular schedule. It worked out well for me.

I think your hair experience is pretty typical – 2 weeks into chemo expect it to fall out. I had the same scalp sensitivity – almost pain to me. I decided after babying the strands that stayed to buzz it all off myself. It was a relief and much easier to deal with. I tried a wig and then opted to “go au natural” most of the time – even at work.

I wish you the very best on this journey. Your children sound awesome and I like your attitude. I recommend that you stay as positive as you can and take advantage of all the alternative treatments you feel comfortable with. I received Healing Touch sessions throughout my treatment and I think this contributed to few side effects for me.

Again, best wishes. Mary Ann

teabag
Posts: 1
Joined: Jul 2010

Hello. I am hailing from Manchester, England. I have grade 3b clear cell cancer and completed surgery,radiotherapy and start chemo on Aug 10. I work as a speech and language therapist and have been advised not too work due to risk of infection as the white blood cell count is often low leaving us more prone to pick up illnesses. What were you advised about avoiding infection while working? I would be in contact with young children but I am wondering if the doctors are being over cautious. Thanks for any comments you may have to share.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

I am a nurse. I worked on a Med-Surg unit in a hospital. It was recommnded that I not work through treatment, due to the possible exposure to infections. You never know what kind of infections you will be exposed to. With you working with children, I think the risk of picking up something would be even greater.

As a speech and language therapist you have very close contact with people. If it were me I would follow their recommendation not to work. Your health should be your number one priority.

I had 3 chemo and then radiation and then 3 more chemo. My counts dropped after I had radiation. I had not trouble with the first 3 chemo's, but did have drastic drop in the WBC with the 4th chemo, ended up in the hospital with febrile neutropenia. I got the Neulasta shots with the 5th and 6th chemo and had no further problems.

Take care of yourself. In peace and caring.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

Sorry you have to be here with us. It sounds like you have a great support system which will help tremendously. I know what you mean about others reaching out to you. It is amazing how many people you will meet who have completed treatments, and want to share their stories. It helps to know you are not alone with everything.

Glad you got the first chemo under your belt. I think that was the most scary for me, since I did not know how I would react to the chemo. I have multiple drug allergies, and did not know what would happen. I did have a reaction to my first chemo, but they learned how to manage it and just gave the medication slower.

My hair did start falling out 12 days after my first treatment. I did not shave my head like a lot of people did. I wore a cap and combed my hair every couple hours to control the falling hair. I used baby oil on my scalp to help with the burning/itching. Caps can be fun. I never did very well with tying scarves, so I stuck to caps. I have quite a collection of hats now. I only wore my wig to church or a special occasion.

Good luck with your next treatment this week. Look forward to your future posts. In peace and caring.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Welcome Teresa....sorry you have become a member of this group of sisters, but am so glad you found this site. The women here have had so many experiences and they are so willing to share any information and respond to any questions.

It sounds like you are doing well...and that is wonderful! The support you have from family and friends will make such a difference for you!

My beautician recommended "buzzing" the hair, rather than shaving. She said that shaving is harder on the hair follicles. Not sure if that is true, but it worked for me! And the one thing to remember....the hair WILL grow back, so you can get through this!

It is great that you are able to work during your treatments....I think that can be a positive influence on how you feel, etc. I hope you can continue!

Best wishes....Karen

susafina
Posts: 134
Joined: May 2010

Hi Teresa and welcome,
So sorry about your diagnosis, but you are in good company. Everyone is so supportive here. I too had the tingling before my hair fell out. It is a strange experience. I do not like being bald. I did have it buzzed off It takes a little getting used to. I have been bald for 2 months now and still scare myself when I see myself in the mirror in the middle of the night. I did opt for a good wig which I really like. I too continued to work during treatment. Sometimes it is hard but I feel like it is the only normal thing in my life rith now. Just be good to yourself and let us know how we can help.
SUE

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

So glad you joined us. You're right, this board is just chock-full of wonderful people who are happy to share their stories, research and thoughts. It's wonderful that you have such a great support system - and now you have us! Please let us know how you're doing.

Love,
Cecile

pipscout
Posts: 23
Joined: Jul 2010

thank you so much for your kind thoughts everyone, and for being on the board and sharing your experiences.

i did get my (remaining) hair buzzed today and it feels good. it felt like a relief. and it looks okay! i have a few tiny bangs the hairdresser left on that i will nurse along for awhile. i had my 2nd chemo treatment today and it went okay. my daughter went with me and we watched a movie on her computer. the nurses were really jovial. afterward my daughter said "is it weird to say i had fun today?" and i said "no--i had fun too". not what i imagined chemotherapy to be like. : )

warm thoughts, teresa

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