April 2015 Chemo Crew... Starting in April? Please join us!

AndreaC

Dizz, hope you heal fast! From a clinical standpoint it looks good, incision clean etc. I hope it's not too sore.

Kbeee, so sorry about your friend. I'm glad it was not related to treatment but you are so right...we have to all be vigilant when it comes to our health. If something doesn't feel right, get it checked out and keep nagging the docs until you get answers. So hard to know what is related to cancer treatment and what's not though...

I have not had any bloodwork since shortly after chemo. My hemoglobin was low then so I am on iron supplements, and I will have bloodwork done in another 6 weeks or so to see if it's working.

Not feeling terrific right now because I have a nasty cold. Bah.

I picked up my tamoxifen today so I will be starting on that. I won't "see" my MO now till December - I will have a telehealth conference with him. Because I live in a small town, I will go to the local hospital and (I think) talk to him via a video link. That worries me a bit...what if I have a lump or something? I guess I would see my family doc and have her do an exam. Of course, I don't expect that to happen...

Had a nice Thanksgiving dinner at my mom's last night! And her loser boyfriend wasn't there so it was really pleasant. Now to look forward to Halloween! I love it!!

Andrea

Jackbirdie

Kbee- great news on the checkup and blood work. The best news is hearing how you feel about your doc and your plan hoping forward. Very good.

ksusan

I was going through some of my photos as I put together a presentation for later in the week, and thought you might be interested to see a cancer organization I visited a few years ago in Gabarone, Botswana.

This organization has an office and a residence for rural women coming in from the outlying areas for services at the public hospital.

Because health issues are considered private, and talking about them might make a person vulnerable to witchcraft, there were no groups. We asked if there was anything that helped the women feel better and a nurse said that there used to be an intern who ran a prayer group that met under a tree when it wasn't too hot outside, but it hadn't met since the intern left. Our recommendation: Reinstate that prayer group!

slothabouttown

wow Susan,

Those photos brought up some feelings. Thanks for sharing. It initially made me realize our privilege and all the comforts we are able to afford ourselves throughout treatment including an unlimited number of OTC drugs, lotions, natural products and foods just to name a few. Seeing the simplicity of that ward made me thankful for that privilege. Then I couldn't help noticing the pink ribbons in both photos, they really are everywhere. And lastly i thought about how, if those beds were typically full with patients undergoing treatment, there must be some close bonds that develop between the women in that ward, and hoped that there was some comfort for them in that, kind of like these groups and the bonds that form in our virtual "ward."

ksusan

I hope so. We were told they mostly watch TV, but I assume there's some bond even without speaking.

This is a really good presentation for me to be working on because it does so clearly illustrate the amazing privilege I have in relation g\to my dx.

bluedog

Ksusan, wishing I could take your class.

ksusan

Thanks, bluedog. I love teaching. This is a presentation about health/mental health intervention with international patients/clients, using examples from other countries to illustrate that an intervention may "work" objectively, but it won't actually work if it's a bad match for the culture. This can be as basic as whether a vitamin is sweetened or what color it is, and as complex as whether the intervention matches the client's ideas about what causes and cures diseases. (Plus: Poor people get crummier services.)

KBeee

ksusan, Fascinating discussion/topic of your class!!!!!!!!!!!!!!

Well...............I am going to do it. Call me stupid. My skin is still nasty and oozing and some, but much of the axilla is healed. I can get bandages to stay put on the other areas, so it is not as sore as the axilla was, and the bandages stayed put during my run today. What this means is that I am going to run/walk the Des Monies half marathon on Sunday. I am doing it with a friend who is the wife of a coworker. She has done it for years and did not really get in shape this year so she was not going to do it. At the last minute, she wanted to, so she thought running/walking would be a good idea. I may be slow, but I will finish. I decided I needed to dot the i's and cross the t's on Finished Treatment...basically it's my way of saying F*** You cancer. I like this race and you are not going to take it from me, even if I finish last.

Stephmoen

good for you kbee that's awesome!

DizzParkMom

kbeee, you constantly amaze me with your ability to push through the fatigue and pain of cancer treatment to do what your spirit wamts to do. Whether you realize it or not, you have motivated me (and I am sure many others) to will our 'bodies' on while they scream at us to give up and rest. We will all be with you on that half marathon in spirit. I know that, for me, I feel as though you and this group carried me over my finish line. If you get tired, let our collective energy carry you through to the end. YOU ARE A CHAMPION!!!

Andrea, thanks for the reassurance about my incision. It is helpful to know it looks like it is suppose to. I am hoping the stitches come out sooner rather than later...it seems like it will be way less painful once that happens. Sorry you have a cold.

Ksusan, I agree with everyone else...what an amazing class you have the opportunity to teach. You inspire me to find more ways I can help my community. I have never taken for granted how fortunate I am and try to impress upon my son how important it is to give back, but somehow it seems like I can do more. Since I stopped teaching, I really miss that feeling of making a difference.

Steph & Gingerchi, how ya feelin'?

Positive_spirit

that is the spirit, kbeeee! So impressive.

ThePrincess

Kbee -and this is why I find you so inspirational!!! GOOD LUCK I will be thinking of you!!!

KSusan - I'm starting Rads soon - I seem to remember you had a great list of instructions for saving skin, can you please send it to me? I'm very worried about it, and I'd really appreciate it!!

ksusan

Happy to see if I can dig that up. Meanwhile, jump onto the summer and fall rads threads if you haven't already!

Kbeee, happy dance for healing axilla!

Rpayton

ksusan your class I am sure is amazing!!!

Karen you go do that run! I'll be thinking of you.

I am healing nice from rads. Moving forward to plan and dream too. Formally signed up to volunteer at the cancer wellness center on a more regular basis. Suddenly feeling more energetic. Of course that could change as the days get shorter with winter! LOL ick

ksusan

I was feeling pretty down this week (can a single one of my medical or allied professionals actually do their job competently?), but planning a vacation cheered me up. I'm afraid that flying will kick up LE, but I also can't live my life in fear or restrict myself from taking some measured risks when they're associated with how I make my life meaningful. I've already committed to hold off on going to the hot, sticky places where I normally volunteer, but I won't agree not to travel at all.

KBeee

I am with you ksusan. I refuse to let cancer take away the things I enjoy doing. I am so glad you are taking that trip!!!! Do not live in fear. There will always be fear, but, if we live in fear every day, then we let cancer take far more than it already has.

GingerChi

Dizz, they did a great job on your ear! Looks like its healing up very well!

Ksusan, neat photos....I bet that was quite an experience. The class sounds interesting! And, your hair gives me hair envy!!

Kbee, I'm so sorry about the loss of your friend. Treatment does so much to us, its good to get a reminder that everything may not be blamed on that. That is so awesome about the marathon!!!! Go Karen, Go!!!!! Glad to hear your skin is healing!

Renee, glad you're healing up and feeling better!!!

Today is the first day in over a week that I haven't felt like total yuk. I actually feel almost normal, whatever that is. lol I've been going to bed by 8 p.m. but I may make it til 9 tonite. lol The PE is a little better too, so that gives me hope. I started the AI (anastrozole) on Monday, now I have a rash on my arms. I go for Herceptin infusion tomorrow so I can show it to the MO then. Its always something!

AndreaC

Interesting to read about the cancer centre in Botswana, ksusan! We are indeed lucky to have the care we do. I am in awe of people like you who volunteer overseas with people who live in poverty. It's great that you're not letting your own cancer interfere with travel. I know with me, I would sooner die than give up travelling! It's a bit of an obsession to see as many places and have as many experiences as I can.

Good luck in the half marathon, Kbeee! You are an inspiration!

I just came from my gynaecologist's office. I had requested the appointment to ask about having my ovaries out. I do not know if I am BRCA positive or not, I won't know till next year sometime...but the doc figures that since I have had colon and breast cancer it's reasonable to remove the ovaries. He also suggested I have a hysterectomy as well, although that was totally up to me. I am going through with it because my grandmother died of uterine cancer...plus tamoxifen increases your risk of getting it. So - another surgery, sometime before Christmas. I had better do my shopping early!

Andrea

ksusan

That's a lot, Andrea.

It's a bit of an obsession to see as many places and have as many experiences as I can.

Sing it, sister. I'm at around 25% of the world's countries (give or take--yeah, New Caledonia belongs to France, but it's a country even though it's not sovereign). I hope to get to at least 50%. And I need Antarctica to fill out my continents.

AndreaC

I know, ksusan! I have yet to visit Asia and South America, plus Antarctica...but they are all on my bucket list. That's amazing, 25%! I have always told my kids that travel is the best education and they have been bitten by the bug too.

Andrea

gkodad

Rads ended yesterday - hurrah! The break last week seemed to really help, so I'm peeling but no wet spots. Now I'm looking forward to getting in the pool (hopefully next week), soaking in a tub, and spending my days more positively. Next blood work on Nov 9 and hopefully. the last of blood issues will have resolved.

Planning a big vacation for next October, and some mini-trips over the next few months. My garden looks like a jungle but reclaming that mess will be a pleasure. Hard to believe pulling weeds and hacking down overgrowth sounds like fun, but it does.

Good luck to everyone still in rads, and hopefully everyone will be done and on with the good things in life very soon. Here's a painting for everyone - we're almost out of the woods. Kbeee, of course, is running out....you go, girl.

Scarlett152

KSusan, I flew from San Francisco to Massachusetts and back this weekend with my son for a college football recruiting trip and was worried about LE and swelling, especially since I was making the whole trip in 48 hours. I did fine, but my feet really swelled up and throbbed during the flight. Otherwise I was fine. I super hydrated, which I think helped. This weekend we fly to Minnesota! I can't wait for the November 15th application deadlines!

ksusan

Congrats, gkodad!

Jackbirdie

GKO- congratulations! 🎉🎉🎉🎉🎉🎉 enjoy getting out into your garden! Free at last. Loved the painting/meme

lovlilynne

Tina, your skin specialist at rads center may have their own advice, but here is an excerpt from a post that Special K (from March DB) shared:

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-Aloe Vera 100% Gel 6 oz Gel by Fruit of the Earth (applied directly after treatment) from amazon

-Miaderm (applied 2-4 hours later)
-Faulding Essentials Vitamin E Cream 75g (from Australia) (applied 4-6 hours later)
-100% Pure Emu Oil (4oz) by Progressive Emu (applied 6-10pm) from amazon
Aquaphor Healing Ointment by Eucerin (Walgreens or CVS) (applied before bed)
(Rub the Aquaphor ointment vigorously between your palms to soften it up before applying)
-Basis Sensitive Skin Bar (Walgreens or CVS) (used for washing before treatment, rinse well, protecting breast from direct shower spray)

I wore a very soft lightweight cotton tank top from Target each day under my bra. If you have 'saggy' breasts wrap the tank top all the way over and under the breasts so there is no skin on skin contact where the breast 'hangs down'. the tank should also came all the way up to the base of the armpit area. I also bought a bra that was larger and looser than normal.

I used a VERY generous amount of lotion/oil/cream, smeared and gooped it all over the breast, underneath and under the armpit all the way to the back. Especially made sure the nipple area was well coated. The cotton tank top absorbed the extra so it didn't get on my bra.
I would also suggest taking a picture of your fields when they draw on you so you know where to goop and make sure you cover all the areas.

-------------------------------------------------

I bought almost all of the stuff above, but I haven't used most of it. My rads skin specialist gave me a tube of gel (probably like aloe vera), and instructed me to powder the area with corn starch 5-6 times a day. What I've ended up doing was in two parts - when I first started, for me, I didn't really feel or see anything, so I'd put the gel that they gave me on right after treatment. Then I used (when I would remember/have time) Miaderm or Vit. E cream. At night I'd put on the Emu Oil. I used the Aquaphor like 2x, but it leaves an oil slick that's still there in the morning, so not great. I also used coconut oil here and there. At my second RO appointment, she prescribed Betamethasone Dipropionate for itching - my port scar was itchy, and they don't want you to scratch. I used that when I felt itchy.

As my treatments went on, probably from week 3 on, my regime changed a bit - right after treatment, I coat the whole treatment area with Miaderm. When I get home, I have a corn starch with a powder puff, and I use that as many times as I remember (I try to do it every time I'm in the bathroom). I continued to use the Emu Oil at night, but at one of my checkups with MO, they told me not to - thought it was reacting (I don't think so, but whatever).

This was definitely one of those things that sounds good to do, but I found not practical to do at all. Besides when you are out of the shower, and maybe right after your treatment, when are you stripped down to the waist so that you can slather yourself? The cornstarch is a nightmare - I have to lean over the sink, and since the treatment area goes all the way up the side of my neck, my shirt collars are always coated in white dust. I probably do something about 4x a day - not the 8-10x a day that I thought I would. Even though the cornstarch is a PITA, I cannot complain about my skin - a little peeling, and mostly itchy, but I'll be done with full area rads tomorrow, and I have had worse sunburns. I told the tech yesterday that it must be because of the "prebroil" that I did this summer :-)

This is from 10/10, 5 days ago, the area is all shiny because I had just put on some of the itch ointment:

The dark area to the left of my neck is the worst affected area with some peeling. The breast area is lightly pink all over.

Lynne

ThePrincess

Thank you lynne! Wow Miaderm is expensive, I just looked it up - how many tubes does one person go through?

THANKS!!

KBeee

Congrats GKO!!!

Tina, I am still on my first tube of Miaderm.

Lynne, Your skin sure fared well!!!! So happy for you!

lovlilynne

I am only on one tube of the Miaderm (have enough to take me through next week) - as I mentioned, I was not putting anything on as frequently as I thought. I do really like the Miaderm, though, it's a great texture, dries quickly, but not drying if that makes sense. It's crazy expensive for a tube of cream - I'm someone who used to buy the $.99 (now up to $1.59) Aloe Vera moisturizing cream for my daily moisturizer. I guess all that $ I saved is being spent on Miaderm now. :-)

To be fair, the area is a bit worse by today:

Bad lighting - my head is shadowing area, but you can see it is deeper red and more peeling. If you could zoom in, you'd probably see the corn starch dust :-) I was trying to show some of the pink area of under the arm and breast. Reminds me to put on some ointment.

ksusan

I can add to that only that I had reactions to aloe and Aquaphor, so I tended to start with Miaderm a few hours before the appointment, then use it again afterward.

Radiation and 3 weeks follow-up took 1.5 tubes.

I'm still using Miaderm--it feels best on my skin, less sticky than other moisturizers. Miaderm in the morning, emu oil before bed at night.

littleblueflowers

Kbeeee awesome that you are doing the marathon!

Lynne, your skin looks remarkably well, considering.

Ksusan, thank you for telling us about your class and travels. It really does me good to be reminded of how much I have to be greatful for. Also, thank you for giving back to the world in such a way!

Gko, beautiful picture! So glad you are done!

Princess, I've used everything else, but not miaderm. My skin held up well, my RO says. (Insert disbelieving snort)

Hope everyone else is having a good thursday!