Starting Chemo March 2015

Jackbirdie

Indy- WOW. I have never read Mary Oliver until I received this anonymous gift of poetry this week. Hers was the first poem I read.

You may or may not know that when I was really suffering after surgery, not getting better, in so much pain constantly, that I then got bronchitis and the coughing spasms where tearing me up all along the surgical site. It was one of the very lowest points in my life. My surgery had been 12/18/14, and this was about February. Still winter here, but coastal Oregon is quite mild.

My brother came for two days and found an old hummingbird feeder cast off in the bushes. He cleaned it up, filled it with nectar and hung it. Almost immediately I began getting a visitor, sometimes two, but mostly this one male with his ruby throat that I could see when he lighted on the very tips of the pine trees outside my big window.

He came many times a day, every day, for several months. Sometimes it was the only reason I could make it out of bed. In some ways he saved me, and I will never forget him for it. He' gone now, but I'm still waiting for him to come back, just like in the poem.

You can't imagine what your sharing if this poem has meant to me today. Thank you.

greenae

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3 minutes ago greenae wrote:

Hi All

I have been using sick time and FMLA since my MX in late february. I was lucky to have accumulated over 100 sick days. I am going back to work in 2 weeks...then summer break, I currently work has a Certified School Nurse in a very urban area, with 3 and 4 year olds at various PeKs and Child Care Centers, for the past 11 years. I spent 20 years as an ER RN, (I continued to work part-time in the ER as well as after school centers until 3 years ago), and 10 years as a NYC EMS Paramedic in Bed-Stuy, Flatbush, Coney Island and East NY, Brooklyn, NY, right after college. I am going out of my mind at home, but at my age (57), my MO thought it easier to stay healthy if I didn't go to work. My kids are from all over the world, and their disease and vaccine status is often sketchy. I feel for all of you with young children, (my 4 boys/men are 19 to 28 yrs old, #1 lives with his girlfriend, and # 4 is a US Marine-OORAH!), and jobs that you cannot take off from. This is a tough enough battle without the added stressors--ugh.

I completed my TC Chemo yesterday and after these SEs subside (usually by Day 12), I will get my Genetic Test results and make definite plans for my recon sx, scheduled for July 7. I am feeling emotional knowing chemo is finished. Praying their are no cells left. My path report from surgery showed close, <1mm margins, in my anterior left MX, so my BS and PS will be scraping around in their before I get my left implant. I am a good nurse, lousy patient...lol. I lost 21/2 pints of blood with a clogged drain 3 days post mx...so I am hoping no more excitement with this implant and right redux/lift. Ugh...who invented boobs, anyway?

I am always thinking os all of you...hoping your SEs can GO AWAY... and wishing your chemo can move forward quickly and BEAT THE SHIT OUTA THOSE ROTTEN CELLS!

Love and Hugs to all...be on the mend...better and stronger everyday!

Love, arlene

Hers' a pic of me and my ONCO RN, Anne...She did a Great job keeping me port and allergic reaction free...and made me laugh!

Dx 1/2/2015, IDC, Left, 1cm, Grade 3, 0/1 nodes, ER-/PR-, HER2- (FISH)Dx 2/26/2015, IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- (FISH)Dx 2/12/2015, DCIS, <1cm, Grade 3Surgery 02/26/2015 Mastectomy of one or both breasts: Mastectomy of my left breast; Reconstruction of my left breast: Tissue expander placementChemotherapy 03/26/2015 Cytoxan (chemical name: cyclophosphamide), Taxotere (chemical name: docetaxel)

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SueH58

Arlene, you look truly joyous (as you should!)

Theresa, I have been on short term disability since my surgery in March. Because of my years of service, I am entitled to 6 months of ST DB. If I need more, it would turn into LT DB. I think our DB vendor keeps touching base with my MO, then my RO, etc. to get a status on update my return date. I expect I could be off for rads, which may not trigger any more SEs than herceptin. So depending on your company and number of years there, it's totally possible you would be covered. I can't imagine working through all of this. To your point earlier, I think the lack of stress from work has helped considerably with my low SEs.

Let us know what you find out, and good luck!

SueH58

OMG, Katy! That poem was totally written for you!!!!

Jackbirdie

Arlene- CONGRATULATIONS!!!

Bells are ringing!

🎉🎉🎉🎉🎉🎉🎉🎉🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉

rleepac

I count 9 chicks and I swear I have been watching them all morning. I love watching mamma hen teach and lead her babies!

rleepac

I have a supplemental DB plan that supposedly covers part-time DB. So my DH is trying to figure it all out to see if I can get something back for all the days off I've had to take.

Bekah

rleepac

I'm really starting to get some growth! Mostly in the back but there is a lot of fuzz all over the place.

lovlilynne

Theresa, my company gave me an "accommodation" to work from home due to my illness. You might want to look into that and that way you have it officially on the books and they can't take it away from you like the other workers. As far as your herceptin not having as many side effects, i don't think it would matter, you needs for WFH are about your doctor's appointments, not having to commute, and not being exposed to other workers where you might get virus or bacteria, etc.

Lynne

greenae

Thank you, Sue and Katy...and Katy, I hope you are on a SPEEDY road to recovery!

Maybe they'll let you be done with 4 rounds?

HUGS!!!

arlene

Italychick

Acid reflux, holy cow! My throat and esophagus are burning and I can't lay flat. Any tips or tricks? This is miserable.

slothabouttown

That's another great thing about this group, I can check in every day after work and never know what I'm going to find- a useful tip for a gross SE, some rant that I can totally relate to, a very interesting poop article or a beautiful poem! And then there are the birds, cats, dogs, and adorable baby chicks! Thank you everyone for being awesome.

Theresa I agree with the recommendation of trying to get a special exception to exempt you from the moratorium on working from home. Seems reasonable if disability isn't an option especially since you can give them a concrete date you can return to the office based on your treatment schedule.

slothabouttown

Theresa I read that the reflux is so bad because the esophagus is raw just like your throat and mouth post treatment. So pepcid or something to reduce the acid and something to treat the esophagus like aloe vera juice or raw honey might be a good one two punch.

Arlene congrats on your last chemo! You look so happy and with good reason!

greenae

Thank you, Sloth!

And Theresa, I have that same problem the first few days after an infusion, Pepcid definitely helps, and a wedge pillow or exta pillows to sleep. It burns and comes up every time I bend down...blech!

avmom

Hi Theresa,

I take Zantac to keep the acid level down. My MO has advised that I can take up to 300mg/day. Generally, I take 75 mg twice a day, but if that doesn't do it, I increase the evening dose. Generic is fine, and I have had good relief without having to resort to prescription meds.

Hope that helps.

Trvler

Just wanted to say hi to everyone and congrats to Arlene!

I have been really swamped with year end school stuff but I am trying to read to stay caught up reading. Blood clot seems much better. Almost no symptoms and I have a short echo Monday to check the status. Will have to stay on blood thinners as long as port as in since I could get another clot. Feeling much better overall. I had my first Taxol Tuesday and so far I have only had some mild bone pain. Just crossing my fingers it doesn't get much worse but taking it all a day at a time.

Katy: I am glad you are feeling better and hope you can resume your treatment next week. I know it is so disappointing to have to extend it. Just want it OVER.

Jackbirdie

Thanks Allison, for thinking of me. I'm a bit down today, as even though the pneumonia is much better, I am still in incredible bone pain, the timing of it makes no sense to me, more than 3 weeks after last chemo. Taking meds liberally. I just can't take much more.

The bright spot in my day is one of Jack's girlfriends took him to be in a Memorial Day parade. I couldn't risk it, germs-wise, and it hurts to walk too much anyway. He went off without so much as a glance over his shoulder. I know they'll take good care of him and make a big fuss over him. Which he will soak up like a sponge.

Sometimes I love him so much it hurts.

avmom

Oh, Katy, I am so glad you're feeling a bit better. I feel your bone pain, though.

Jack is very handsome in his fancy dress. How fortunate you are to have him.

I was away from home for three days at my sister's this week to attend a reconstruction consultation. My son gave me a ride to her place, but then I was stuck there until I could arrange a ride home. It was lovely to get home yesterday, and my "therapy cat" was ready to provide extra cuddles. I did my 7th (second last!) chemo treatment on Tuesday, and the bone pain gets worse every Round. There is a fundraising dinner tonight for a local organization that I've been involved with for 20 years. I wasn't able to be on the committee this year, but am resting aggressively today in the hope that I can go for an hour or two, if only to say hello to everyone. My DH has expressed some concern that it might be too germy, but my whites and neutrophils were pretty good this week, so if I can stand up and walk a little bit, I intend to try it. My mom's place is only about a five minute cab ride away from the event, so I do have a place to land if I crash.

I will be sending healing thoughts your way. It might be a good time to treat yourself to your friend's soaker tub, if you can manage it.

Gentle hugs.

SueH58

Ladies, why such bone pain? Is it from the chemo or the Neulasta?

Katy, do you have pain pills you can take? Or perhaps you can slip into your neighbors tub and take a hot bubble bath.

I so wish I could be there to layer on additional heating pads for you and Jack!!!!

avmom

Sue, I think the bone pain is from both the chemo and the neulasta. I had some bone pain after each Nuelasta shot during my first four, AC treatments. Since I changed over to dose dense Taxol, the bone pain has been much, much worse, and I have neuropathy in both hands and feet that has been getting more extensive with each additional spa day. Today, my feet are all "pins and needles" to the ankle. On my hands, my thumbs are affected to throughout, but my fingers are still just affected to the second joint.Claritin has done nothing for me, but warm soaking with Epsom salts has been some help. Alternative heat with cold provides some relief, also.

I am very fortunate that my PCP has written a prescription for morphine, which doesn't eliminate the discomfort, but does make it much more bearable. I hope Katy has something that she can take to get a bit of relief.

I keep reminding myself that this is nearly over!

Italychick

Avmom, just a thought, I keep a basin of room temperature water with Epsom salts in it and put my feet in there off and on all day. Not sure if it helps, but it does feel good.

I took some Pepcid today and things are feeling better. The burning esophagus seems to have subsided. Males doing aloe Vera juice and yogurt.

Katy, I am so sorry about how crappy you are feeling. This shit sandwich certainly isn't fair.

Jackbirdie

thanks for the support everyone. I do have oxy and I've now broken down a bit and am taking it all day, not just at night. I also added Advil to the mix. And clonazepam which isn't a pain med but does help me put things in perspective.

And I did sneak over to my friends and soaked in salts and almond oil. Then coconut oiled everywhere. The relief was palpable, but not lasting. I even have what must be phantom pain in the boob the tumor was in!

I may do the topical MM again. Might do topical and under the tongue. (Getting quite desperate, no?) My neice just got a job producing the news in a town two hours from me. She and her bf are moving house as I write, and they are stopping here for two nights. They will be here in a couple of hours. So I don't want to be too "stoned" when they get here. But I know they will understand. She was the one who came after my surgery. She gave up her winter break to help me. Sweet, smart, girl.

Jack is back from his parade duties, and the woman who took him said HE LED THE PARADE! I had no idea. He pranced in front of the banner the whole way, they said. He knew it was an honor. Such a smart little fella. And me- so proud. Makes up for everything that hurts today.

Hope you all have nice weekends, at least as nice as possible. I will make every effort to do the same. 🎈🎈🎈

slothabouttown

I'm glad little Jack was able to represent and grand marshal even! I just wish you could get out from under this pain and get some relief, this right after the pneumonia is double not fair.

IndyGal35

I ❤️ Jack.

Seeing his sweet little face always makes my day better too

ninjamary

Katy,

I hope it gets better sooner rather than later. Hope your niece and boyfriend treat you like a queen.

Love, love the Jack stories.

greenae

thank you, Trvler!

Getting thru this last set of SEs, wishing for minimal for all.

Katy, i am hoping you are feeling better. The Motrin 600mg works for my Neulasta aches. And theresa, i am glad the pepcid worked for you!

Hugs to All, and thank you!

Arlene

Trvler

I think Jack should be our official mascot.

Katy, I am glad you have your niece coming.

Jackbirdie

my mom logged in for me. I'm pretty tired after the parade and all, and now I have to guard two more people because my mom's niece and her bf are here. But I am very honored and accept Trvler's motion to be your mascot. I worry about my mom a lot, but since she met all of you my job has been much easier.

Jack

This is me making sure she's really ok

This is me after the parade

BBwithBC45

I second Trvler's motion. Jack's photos always make me smile

Jackbirdie

Who me? Thanks!