September 2013 Chemo Group

Miss_Mama_Bear

LHL: I've thought about having all mine out too. It really scares me being ER+ and also I read that Tamoxifen can increase the chance of uterine cancer. UGH!!! I have an aunt battling that right now. I don't think that insurance will pay for it unless you are BRACA+ though. Also, I don't know it it is a good thing to go into menopause so early. I have heard that you have to have bone scans done reguarly to check for osteoperosis? And then all that extra radiation increases your chance of cancer? I have tried to avoid researching it too much so it doesn't consume me and I am a while off before I have to deal with that. Still have surgery to deal with first!

Miss_Mama_Bear

Haha, I just saw your post Audra.

alfranco

MamaStewart-so happy for you. It made me cry. Big hugs to You.

lighthouselady

mamastewart - that is AWESOME!!!!!!!!!!!! Seeing that picture gave me chills. What a fabulous thing to do, and you are so deserving of something wonderful. :-)

kjsimpson

mamastewart,

That is incredibly awesome!!  Great pic and great friend!!

kjsimpson

Mamastewart,

Do you mind if I post that picture on facebook?

KBeee

Mamastweart, that is so awesome! thanks for the smile! I agree that you SO deserve that.

As for surgery, I was lucky and had an easy time. Here are some things that made it easier: 1. We moved our big, cozy recliner to a spot where it was easy in, easy out, and put a table next to it at reaching level(when sitting in it) with everything I'd need. 2. in the hospital, i slept with the bed elevated, and at home the first few nights, i slept in the recliner. i could easily get in and out that way. 3. Before surgery, make sure all sheets are clean; changing sheets is challenging for a couple weeks. 4. Move things stored on high shelves that you might need, down lower. Do a quick scan off all high shelves before surgery. 5. Keep some clorox wipes...or any wipes in a low spot...you can do a 10 second clean of anything with them. 6. Have clothes that you can step into and pull up, or clothes that close in front. I know I had quite a lot of "looks" in Kohls trying about 20 tops to see which I could pull up over pants to get on. 7. My favorite way of dealing with drains was to wear hoodie sweatshirts inside out. yhe drains just went in the pockets. I am always cold, and no one questioned why I had sweatshirts on in August. The ones I hot from Target, you could not really tell were inside out. Yes. I did play Flashdance quite a bit, because the look was a throwback to the 80s. I went to work 2 days and also went to a party, drains in pockets, and no one had any idea. 8. Trust your team and think positive...it MUCH easier with surgery than chemo! I was so excited to have that cancer out of me, I was really excited for the surgery. My BS was my favorite doctor of all I've had, so for me, there was no fear. I was happy to be there and joked with those in the OR the whole time until i was out. 9. Walk. It prevents blood clots, a danger with any surgery. 10. A shower brush with a handle helps you reach the areas you can't reach.

PeacockGirl

mamastewart: just chiming in to say how WONDERFUL to reconnect with a friend and that she arranged such an amazing visit! You SO deserved that. I'm so touched as I know we all are. Really, you know if we lived closer most if not all of us would help you in any way that we could. I hope you can keep that connection with your friend going.

In other news: a benedryl and 2 Xanax did NOTHING to stop my hourly wake ups all night, again. I'm getting SO tired of sleeping for 55ish minutes at a time. Is this life's payback for opting out of having children so long ago? I'm asking for a real sleep aid on Tuesday.

Miss_Mama_Bear

Thank you everyone! I am still just flabbergasted. I have never had anyone do anything even close to something like that for me before. I am going to contact the Guardians of the Ribbon and see if there is anything I can do to volunteer.

KJ- sure you can share it!

KBee- thanks for the awesome tips. I will surely be using some of those. I am hoping that I will have a quick recovery. I think my sister will only be here for about 2 weeks...if that long, and then I will likely be on my own. I may be able to get some friends to help out but I am thinking it will be few and far between. I am still trying to get the nursing agency to have nurses in place to cover my oldest's waking hours. Who knows how long it will be before I can lift his 63 pound weight or even changing his diapers would likely be a challenge because he is stiff and lifting his legs can feel like his whole weight sometimes, or more if he is fighting against you.

Peacock: I have used meditation to help me fall asleep. It is quite amazing how well it works. I have had nights where I was teeth-gritting wide awake from steroids and it would knock me out within minutes. If you haven't done meditation before it might take a few times to get comfortable with it, but it is worth a shot. I downloaded some stuff off Google Play onto my phone and just sit my phone by my bed and off I go. I really like Darren Marks, but I think I had to pay for those. It wasn't much, but there are some free ones as well. I am sure there are some relaxation CDs you can buy as well if you want to go that route.

Miss_Mama_Bear

Oh and I wanted to say something about nails. The painting of the dark color is supposed to prevent UV light from hitting the nail bed and keep you from losing your nails. Since I forgot to paint mine the last round I definitely feel like they have been affected. They are kind of numb feeling, but then again that could be neuropathy, I suppose. My right big toenail is definitely a bit darker colored. I wouldn't think that would have anything to do with UV light as I was wearing black fuzzy socks last round, so I guess if you are going to lose them, you are going to lose them. I would recommend painting them if you can though just by how different mine feel this time; it is annoying if nothing else. Could be cumulative effects, but it also could possibly not be.

PeacockGirl

mamastewart: Ironically (??)...I'm a yoga instructor and teach meditation/relaxation techniques. hehe. I'm my own WORST student. but thankyou for the suggestion. I've used a few 4 letter words as mantras lately. LOL. maybe I should just try some yoga before bed.

kjsimpson

That is impressive, Peacockgirl!  When I grow up, I want to be in that good a shape... looks like I'm growing up this coming year, too.  ;-)

Miss_Mama_Bear

Haha I kind of wondered if you weren't familiar. And I second KJ! Very impressive!

lighthouselady

Wow peacockgirl! That's very impressive!

I managed to ride 6 miles on my exercise bike tonight and I thought that was a big deal. LOL I'm trying to ward off the restless legs that have been plaguing me for the past few weeks. Last night they were so bad I woke up at 1:30am and had to walk around my living room. Ugh. I have always had this, but it wasn't this bad on AC, so I guess it's something with the taxol that is making it worse.

kjsimpson

Lighthouse lady,
Try elevating your feet with a pillow (a firm pillow) when sleeping.  That has helped me a lot.

mankatostate

peacock- I can't remember if I am repeating myself here or if I wrote this idea on another spot...I have checked out books on CD/tapes from the library and listened to them at bedtime. Easier than reading myself and chemo effected my vision so it sometimes made watching TV difficult. Every time I tried to listen to the stories I kept falling asleep. Just another idea. I think part of the reason it helped is that it took my mind off of things..

70charger

You ladies are amazing with your exercise! Right now I am having trouble getting upstairs. This last tx is kicking my butt bigtime. I seem to have gotten all my se's the next day. I'm on Day 4 now. Wish it was day 14. Pity party over. Have to try to find some more jello.

KBeee

Wow! Peacockgirl, that is amazing!!!!!!!!!

kjsimpson

Hang in there 70Charger,

Round 4 kept me off work all but 3 hours of last week.  I started feeling better day 8 post Round 4.  Frustrating.  But remember, it will get better!!  Easy for me to say on Day 10. 

I'm just going to plan on being out for 7 days for Rounds 5 and 6.  The light is visible at the end of the tunnel.  Just keep exercising faith that it isn't an oncoming train. 

JellyK

Struggling today. My close friends' son (basically my nephew) was diagnosed last Friday with Hodgkin's Lymphoma, he's 8 years old. It's the "good" childhood cancer, 96% survival rate, blah blah blah but I'm just a mess. To watch a kid go through chemo...it's unthinkable. All weekend I've been right back where I was in May - crying anytime I'm alone with my thoughts, numb, irritable. Today I can't focus or get anything done, but can't focus on distractions either, if that makes any sense. I'd gotten to such a healthy mental place lately, now I feel like I've been knocked off of my pedestal. Uch, I hate this f*cking disease. This is also one of my son's closest friends, and I hate that my son has to experience this whole thing again too. The nice thing about my son though is that he's only known survivors, so he's not scared, and he's excited to shave his head with his friend, lol.

70charger

Oh Jelly! This too shall pass with time. My dds' bff went through that 20 years ago. Her biggest complaint was her overbearing mom. She was having trouble finding scarves, so I found a camo bandana. She wore it immediately. She said that way Mom could not find her. LOL. Even with radiation & being told she couldn't have kids, she now has 2 beautiful daughters. I'm sure he will do just fine. Look at the support he & his family will have with you & your son to guide & be there for them. BIG HUGS.

josgirl

JellyK - it can really just sneak up on you and take your breath away.  As horrible as my diagnosis is for me the one thing that removes my self pity is knowing it could be my daughter and not me.  A close friend of mine had a son with horrible brain cancer (survived through sheer love and courage) and while I was not touched by cancer then, I saw the fear and helplessness his parents lived with.  Your son's parents may (or may not, I guess to) be looking for your opinion so they can understand what their son is going through.   Your son will be a wonderful support for his friend knowing what he knows and offering hope and normalcy.  As we know the isolation can be the worst emotional side effect and what a blessing it will be to have an 'in person' friend that understands. 

josgirl

Finished chemo last week but what a doozy of a weekend.  The worst is I fainted in class - imagine 20 college students ....  Only slightly embarrasing.  But as the teacher was getting help and I was getting my bearings, the students were all asking if I needed water.  Over and over - and all I wanted to say was I have been drinking - its not dehydration and drinking water right now would make me throw up - tastes like oil!  I guess I have done such a good job 'pretending to be normal' that they couldn't believe I had cancer (even after I said I fainted from Chemo two days earlier).  Kept asking to give me water.  I have to say that I really did enjoy this oasis where no one knew....

Either way happy to be done although doesn't feel like it.  Maybe will after I get my port removed tomorrow - same surgery in reverse (not local anethesia at this place).  Then radiation next week. 

Thanks to all you ladies - you are a source of strength for me and with everything I got going on I am just so grateful to have you here. (course wish none of us were here). 

lighthouselady

Oh JellyK - I'm sorry. I can just imagine how hearing that brings all of your emotions right back to the surface. :-( I hate to think of anyone going through this, but especially a child. I smiled when I read that your son can't wait to shave his head. :-)

Josgirl - Hurray for being done!!! Congrats on finishing this phase of the journey. I'm sorry about the fainting. Ugh. I can't drink water right now either.

So even after my bike ride last night, I still had restless legs the minute I got into bed. SO frustrating. I'll have to try elevating my legs tonight like KJ said. I've also heard to put a bar of Ivory soap under your sheet by your feet. Have no clue what that could do, but I'm willing to try anything.

I worked this morning, then went grocery shopping, and after I came home I steam cleaned my living room and hallway carpets. I'm EXHAUSTED. Cooking dinner now & then I'm planting my butt on the couch.

Taxol #3 is Thursday, and my mom is flying in that evening and staying until the day after Thanksgiving. My son turns 12 on Thanksgiving, so I'm trying to figure out what to get him & what to do for his bday since it's the holiday. I don't really have the energy to think about it.

JellyK

Thanks guys, I knew you'd know, you know? :-)

alfranco

JellyK-so sorry to hear this. I don't know what to say except I will keep him in my prayers.

Josgirl-congrats

Lol-happy birthday to your son

KBeee

Jelly, I am so very sorry. As mad as I get at this chemo some days, I am so thankful it is me and not my kids. Your son sounds like an amazing person, and an incredible friend. i know when i shaved mynhead and my firnds from work all did it with me, it made it sooooo much easier. You will, not doubt be a good resource for him, and one of the best things you can tell him is that it is ok to feel angry, sad, frustrated, etc,and it is ok to cry.

Josgirl, congrats on finishing your last infusion. I hope your body heals quickly and that you feel better and better each day. Sorry to hear that you passed out in class. You obviously were incredibly strong while in class that they had no idea.

audra67

J elly K- I am so sorry about your sons friend...my oldest daughters best friend had that when she was 17, took her a few years and she is good as new! Very hard on the family though, and I know you will be an inspiration and guide just knowing all you know from your experiences. God has placed you in this to be a light to them..I just know it! And your sweet son is getting to use his hard earned knowledge to help his buddy too!

Jos girl- WOOOOOHOOO for you! That must be some great feeling!

lighthouselady

JellyK - I forgot to add one thing.... my kids have seen my sis-in-law and my BFF both go through breast cancer treatments in the last three years, and they are both fine now. It helps SO MUCH having those positive stories so they didn't immediately freak out and think cancer = die. It's still scary for them to know their mom has cancer (as I'm sure it is for your son to know his friend does), but seeing people come out on the other side stronger than ever (and healthy!) is amazing and encouraging.

kjsimpson

Josgirl,

That is kinda funny (the water offers).  Hope you are feeling better!