Starting Chemo March 2015

Hang in there, ladies. So sorry for all that has happened to all of us through this shit storm.

This round has been less user-friendly for me. So tired. Sleeping ~12h a day. I'm trying to accomplish things in the early part of the day before fatigue slams me. Brain is running slow. Had a PS consult yesterday, kept screwing up while filling out the forms. Blech. I think I've also been spending too much time in my own head. My dx came at a time of major life transitions for me - separated, moved into my own place, unemployed for 1.5 years - I feel really lost. Not sure what comes next. Definitely been rethinking many life choices. Trying to figure out what I want to be when I grow up.

sigh

just reading through all the posts while I've been sleeping (not shopping) on day 3. I feel better today. Yes, I've decided that we are the loveliest most supportive ladies I've ever had the pleasure of knowing. It is a shit storm. But I feel so strongly that life is so much more beautiful knowing that we are all so different, and yet we find the common ground so easily. I love you all.

Some time ago Sloth, who lives about 5 hrs from me, referred me to her lymphedema specialist whose whole practice is bc patients. So sad that in a small city like Portland there is enough business for that. I had initially planned to see an OT about an hour away because I didn't think I had the strength for the trip. I had planned last fall to go to Portland, my mother's birthplace, to see the Japanese Garden there, which she loved.

I have been plotting and planning to try to see the more specialized lymphedema specialist and decided to try to go to Portland at the end of my next cycle. Did the research, and decided to stay in a hostel, of all places, but highly rated and world renowned- and they have a few private rooms. 1/3 the price of a regular hotel room in downtown, and I'll be around young people instead of the mirror image of my old self, traveling on business with no time for life. So I called the specialist to make an apt and turns out she has family in this area and will make a house call for only an extra $20! From 5 hrs away! She comes next Tuesday, as she didn't want me to be in pain for another 3 weeks.

She will teach me some things I can do for myself, and if it helps, I can see her again because I am now so excited about my little trip I am going whether or not I need more treatment!

I will take 3 days, so I don't overdo, and leave time for naps. Poor Jack will be left with one of his Furry Friend mommies, who he loves and who has a dog he likes to play with. So that will keep things simple for me, safe for him, and we shall have a tearful reunion upon my return. I hate to miss one day with him. But I think this will be good for me.

So much writing about me, me, me.

Shaz I hope you've been sprung from that joint and that you are home with a new battalion of meds to treat your awful headaches. But I am very glad you went. You needed to wake those people UP!

Diane- still thinking of you and all the pain and worry you are going through right now. Never far from my thoughts.

Eileen- your dx could not have come at a worse time. Having to redefine yourself on so many levels, practically every level, is some kind of difficult. Right now, don't blame yourself for not knowing, not deciding. Just try to congratulate yourself for STILL STANDING! You are a warrior. Your whole being, lifestyle, self image, your very life itself has been threatened. Lean forward in the foxhole. We have your back.

To all of you having a shitty SE day, remember you are precious. You are cared for. You are unique. And you are not alone.

Global hugs going out to every state, Canada, and Oz. xoxoxo

Katy

terrymarie- sorry u feel unwell - my MO told me yesterday that he has a mix of Benedryl/Malox/xylocaine that he can give me to rinse with if I get the mouth sores etc maybe you could ask to try something like that if your MO has something similar in his arsenal ?

Terry: I definitely get way more useful stuff here than from the pros!

Is there anything we can do to try and reduce eye lash eyebrow fall out

mayday mayday.

I just fell down in my house have no idea what happened but I'm ok. Thought I twisted my ankle but I'm walking on it. I did scrape up my knees and arms.

Theresa if you're out there or anyone I just cleaned it up and put triple antibiotic cream on it. Is that right. Any other suggestions? I'm alone here but it's not that bad. Just want to promote quick healing.

Thanks.

Holy smokes! Go lie down and get your bearings after making sure any open scrapes are cleansed and covered. Scary ! I used peroxide on a cut and polysporin.

Katy, Remember I fell down this week too and skinned my knee. Are we twins? Don't forget about the coconut oil too. It is anti bacterial and anti fungal. And feels good. Not sure about peroxide, it can be a bit harsh and actually remove tissue.

As for the mouth thing, I also got a tongue scraper. Gross, I know, and sorry if tmi, but when I scrape my tongue all these green and brown dead taste buds come off. Totally disgusting, but does make my mouth feel way better.

One way I fall asleep great is to listen to either Enya or Emmy Lou Harris, or some kind of soothing music in a dark room with a fan blowing. Just a thought. I also block out all light in my bedroom, even the alarm clock. I take a soothing lukewarm bath right before bed too.

Just got back from bike ride with my friend Cheryl and sitting on the beach staring at the ocean. Makes me realize with something so beautiful in the world it isn't all bad. Ladies, get out, do something mindless, fun, totally frivolous. Get out of those heads! We are all still here and still alive, and today counts. I passed a paralyzed guy on my bike ride who was riding a flat on the ground bike, using only his arms because that was all he was able to use. Made me feel fortunate I still have two good legs and arms.

Big hugs to everybody out there having a hard time. I wish we were all closer so we could hang out and be able to support each other in person as well as on this forum

Katy: I am glad you are ok. Be careful! I am glad Jack had his playdate. Take it easy tonight.

Italy: I like your post. Sometimes you get so caught up in the c, you forget about everything else. I have been enjoying the heck out of my kids lately. My younger daughter (9) was looking at me with my hat and I was explaining how I just want to be comfortable. She said something like 'yeah, I understand. And you look kind of like 'an older woman baby face'. I know she didn't mean to say something that sounded remotely insulting. She was trying to be nice. I just laughed.

Trvler, that is priceless! You can't make moments like that.

Sharon, I'm sorry to hear you're in the hospital. I can't believe they haven't found some relief for you yet! Where are you in terms of menopause? I had migraines my whole life but as I am now into about 6 months without a period I think I'm finally "in menopause" but not official until 12 months without. My point is I think sometimes estrogen plays a big role in some migraines. Mine have gotten much better over the past couple years...at least something has. I will be thinking of you and hoping they find something to help you while you can be attended to.  Hugs

Lynn and Jem-Your posts both moved me and broke my heart. I had a couple of years where we had multiple losses and it seemed it would never end. My mother, mother in law, father in law, child of a close friend, my horse and my dog. All in one year so I can relate but never feel what each of you must be going through. We all experience loss and grieve differently. You will be in my prayers.

Theresa, thank you for the inspiring post. Seeing the man with no legs put things into perspective instantly. I work with the seriously mentally ill and homeless population and I think I get more from these relationships than I can ever repay. They teach me something about courage every day.

TerryMarie-You described exactly how I feel when I have nights of insomnia, usually starting around days 6 or 7 after chemo. They think it's the steroids but I feel like they should be out of my system by then?? I lay there and feel sometimes near panic/scared, thinking about how am I going to work tomorrow when I can't even stay awake behind the wheel after a night of insomnia? Just know you're not alone and you can always get on and post how you're feeling although I agree with trvler it's best to stay of electronic devices, sometimes it helps to share it in some way. Stop feeling bad about feeling bad lady! We all understand here.  I will be thinking of you and hoping you have a restful night.

Katy-I hope you're feeling ok after you had a chance for your body to process the fall. Sometimes the pains show up after the shock wears off so PLEASE care for yourself well! We love you and need you in body and spirit. If you love lavender I have a friend with a lavender business. She has some of the best sprays made with only natural essential oils and vodka, ha! I'll send you some.

I'm doing better today. The burns are healing finally but I still have some neuropathy in both hands making it uncomfortable to type but you ladies give me strength through the courageous ways you support and live your lives. I am forever grateful for every woman contributing in any small way to this thread.  The bracelet will be traveling to one of you in about a week! It's been enjoying time in Virginia but I've had trouble finding a charm to add without ordering online.

Peace to all tonight,

Diane

Diane- how beautiful and generous! It will make some young girl very happy.

About the bracelet. We right now have 12-14 that have expressed interest and I have nine real names and addresses. I may have missed a name or two on those days when posts just whiz by.just send me a pm with your real name and address. I will only share it with the person just I front if you so it can keep moving.

I am missing

NinjaMary

Carrie

Indygal

Arlene

There is no rush and no worries. People can participate in the bracelet even if they can't do the reunion

It's just a way for us to connect in a more physical way.

But as it stands now, there are about 50 weeks divided by 13 people, so Diane, you should keep it at least 2 1/2 weeks! You've only had it two days

Here is the order I have now (it started with me so I'm not on the order)

Diane, Meme, Shaz, Eileen our hostess, Bekah, Theresa Italychick, Avmom, Amy so-she-did, and Slothabout

So please, all are welcome. Some are adding charms if they feel like it, others are just going to enjoy the magic.

Oh Katy, I'm sorry today is such a shitty day for you. Hang in there...tomorrow's a new day. Hugs

Katy I hope you aren't reading this until morning and you are snoozing peacefully tonight. I ordered the little bed for our bracelet tonight so I'm excited to make my contribution!

if I went to the Hosp I'd have to leave Jack alone. A friend could come in the morning

No ice or anything allowed to disguise the temp right?