Recovery week

Hi! Yep feels like the good week i get between treatments:) Finally feeling a little better, just in time for Christmas! woohoo! Had a fabulous time at the party last night, and am eating leftover Christmas cookies from Wegmans for breakfast;) Merry Christmas, everyone!

Bald again! Ixempra #2

Yep, had to have Will shave my head again cuz of so many little hairs falling all over me. Honestly I don't mind, it's like the least of my worries!:)
Hope everyone had a great Thanksgiving, we sure did!! Had my second round of Ixempra yesterday and although it took ALL DAY it's done now and I'm going to try to keep track of my side effects this time. I had a lot of carpal tunnel ish symptoms with pain in my wrists and elbows mid cycle, and no appetite for the middle 10 days or so. We'll see what happens this time! I have 4 weeks til the next one cuz of the Christmas holiday.

Better now:)

Eyebrows take 2

Ixempra is tough, I finally get why some people are off work for chemo...I could have happily stayed home for the first 10 days after my first Ixempra treatment.  But by around Wednesday, I was feeling more like myself, and now am back to eating normally, feeling less nauseated everyday.  The weirdest side effect I had was that my arms and wrists hurt like crazy...almost like the chemo was attracted to the spots I use the most!  That lasted 4-5 days, and thank goodness it's getting better now.  Still have my hair, but am expecting it to fall out any day now according to the oncology team.  Looking forward to a lovely Thanksgiving with my family.  Hope my eyebrows last that long...last time they peeled off and left me naked! Hope this time (darker, thicker) works out better! Happy Turkey Day!

Ixempra Side effects

It's been a week, and it's been harder than I had expected:( Today my joints ache and my appetite is still not good...it's better than it was, though.  The first couple of days I felt very nauseated, but never actually threw up so that's good!:) Now, I'm just weak and sore, feel kinda flu-ish, almost like my body isn't my own if that makes any sense.

Tomorrow I'll go for the touch up appointment for my eyebrow tattoos:) I'm looking forward to it, I want them to be darker and more obvious, like they were at the very beginning, not faded out like they are now.

All in all, I'm happy that this treatment is only once every 3 weeks, it gives me time to recover!

Ixempra #1

Hi from Strong's infusion center:) Damn it looks like i only have one tattooed eyebrow; i have an appt next week cuz apparently the ink didn't take well and they have to redo it.  This chemo is the longest one I've ever had, 4 hours, so right now I'm just waiting for the benadryl and heartburn meds to kick in, then they will get started.  Thanks everyone for all of your extra support this week as I venture into this new med.  I appreciate it more than you know! Cher, thanks for the massage certificate!! Massage works wonders to keep the aches and pains away:) xoox

Next!

Soo... Our feelings were correct:( last weeks PET scan showed disease progression, especially in my liver.  So, next week will start new next chemo called ixabepilone (Ixempra). Look it up and let me know what you find on the side effects; Colleen and I checked it out quickly and it looked more severe than past chemos with worse side effects, but as always it depends on the person so we'll see. I'm nervous. Start up the prayers and good vibes and send to me please. Thanks! Jen

Ugh

My team isn't happy and now neither am I:( I had such a nice weekend in denial, Edie is home for long weekend and we had family dinners and a little shopping, dinner with Leslie and Chris and the babies, gorgeous fall weather.  Now, I'm at my Eribulin appointment and nobody's happy with my markers.  My next PET scan was supposed to be in November, they want to move it up to as soon as possible, they think the Eribulin isn't working anymore. Sigh.
I'm glad I'm getting my eyebrows done on Friday, something positive to look forward to! Almost everyone said my right eyebrow was a better fit for my face, so I'm going with that (since that was my opinion too!) I'm a little concerned about the color of the ink, but Will is coming with me, he will make sure it's perfect:)
Send me some love and prayers, something tells me I'm gonna need it with this PET scan.

Eyebrow tattoo?

Left or right? :)

So after losing my eyebrows to the chemo fairy again, I've decided to take the plunge and have them tattooed back in:) Colleen and I went to a medical spa last Friday and they drew on the above samples with eyebrow pencil so I could get a good idea of what they would look like...opinions, please! I have an appointment for the tattoos on Oct. 25.

Am feeling well; the second week (now) is always the hardest one of the 3 week cycles, so I'm tired but not too bad.  I love Fall, so the chillier overnights and mornings make me happy:)

Day of rest:)

I called in sick today, last night i decided i really need a full day off with absolutely nothing to do except rest and watch tv:) Thank goodness for RIT's generous sick leave policy, I'm really grateful on days like today. It's the end of the 4th week at RIT, and I've been able to keep up with my schedule so far:)
I'm feeling pretty wiped out, tho, just in general, achy and sore, and the stairs at RIT are killing me! It feels like I'm dragging 500 pounds up them! Oh well, a long weekend will hopefully give me my energy and spirit back!
Eribulin is still my friend, although I noticed that one of my numbers was slightly elevated last week, no longer going down, so it may be that it's not working for me any longer, but I won't find out til November PET scan.
My hair is slowly growing in, very thin tho, and i think i lose as much as grows in! Also, my eyelashes and eyebrows have fallen out as well and aren't growing back yet.  I remember the same thing happened before, and losing my eyebrows really changes my face!  Colleen and I have an appointment Oct 4 to find out about getting my eyebrows permanently tattooed on...sounds expensive but i think worth it to make me feel more comfortable:)
Anyway, just wanted to update that I'm feeling ok in general, just need some rest and I'm going to go take a nap! Thanks to Leslie and Chris for bringing baby Lia into the world last week; there's nothing like holding a brand new baby to give me hope for the future!

Thanks as always for all the prayers and good wishes.  Jen

It's all good:)

Second treatment of this cycle yesterday, and today I'm feeling well.  RIT just started back up again, so I was worried about working full time through treatment, but so far so good:) I feel kinda hungry, kinda nauseated but nothing too bad.
I'm hoping to go get a massage this week, if I can fit it in.  Thanks for all the well wishes!:)

Numbers look good!

One of the ways we monitor the cancer is thru tumor markers, 2 different numbers that, for me, seem to reflect fairly accurately  how well the current medicine is working. And, so far, every month they've come down by half, so everyone at my appointment yesterday was all smiles:) me too.
I had my Eribulin treatment yesterday, as well as a prescription for an antibiotic cream for my poor scalp.  Helped, but hasn't cured it yet, so I'm trying to be patient:) I have the day completely off today, so am looking forward to taking it easy - even did my Wegmans run yesterday so i wouldn't have to do it on my day off:) Woo hoo, thanks everyone for sending hugs and positive thoughts, they help more than you know!!

@#$% folliculitis!!!

Never heard of it?:) I have! Last time I lost my hair, same thing happened.  All the little hair follicles on my scalp are inflamed, sensitive and sore!!! Sometimes it seems like it just never ends; isn't losing my hair enough? Now my head has to hurt too? Ugh.  At least this time I know what it is, last time I just thought I was luckier than most and had pimples on my head.  Actually, the chemo is seeping out through my pores (making my skin dry) and thru my hair follicles (making it sore, cuz it's POISON!) The fun just never stops, and I just keep getting sexier!!!

One bright spot is a little prezzy i got in the mail from my favorite charity, Human Touch Initiative with gift certificates for massages :) Woohoo! Thank you baby sister Suzi and Curt; hope Ginny can fit me in this week! Another was having dinner with Bob and Robyn at the lake house, delicious dinner and gorgeous views, plus people I love...awesome.

Soooo sleepy

I'm having a rough week, within an hour after I wake up I'm ready to go back to bed. Afternoons are especially nap inducing, it's crazy. I literally could stay in bed all day. Last week on top of my chemo I had my monthly shot of xgeva which really hurts my spine, so as that wears off, thank goodness, I'm left exhausted. Ugh. Hoping this gets better so I can get up off the couch!

Twins?!!

Do we look like twins? :) That's my Dad! Back to being bald again, little sad, but relieved to not be constantly plucking hair off of myself and everything around me.  The whole family gathered in the master bedroom and watched Will do the honors last night.  I bet Edie's boyfriend never expected such an exciting evening! Feels good, just chilly! Luckily still have all of my hats from last time (thanks Suzi!) and I'm scoping out a new one on Etsy now:) Good excuse to be stylish!

Bye bye curls:(

Yup, time to face the facts, I'm losing lots of hair every time I shower, or touch my hair, or shake my head... It's really annoying, little pieces of hair everywhere, impossible to deny. I don't think people can tell yet, but it's such a mess I may have Will take care of shaving it off for me when we arrive home from vacation tmw. Even Will, who constantly tells me it's no big deal, has admitted it's time. So, I'll probably have a good cry and just get on with it. Shit. Break out the bandanas, Gillies!!

Halaven, Round 2

Hi:) I had another dose of Halaven this morning and am riding in the truck on the way to WV and no nausea:) so that's good! My hair is thinning and my legs are swollen... In many ways I feel like I've turned 70, not bad for someone with a fatal illness!! My white blood cell count is low, so I'll have to start daily injections of Neulasta next week... The fun never stops! Keep sending me good vibes; we are on vacation this week in WV glamping it up:)

Pretty good:)

Hi there, back for second chemo treatment tomorrow with the Halaven...this past week after the first treatment wasn't so bad, just a couple days of feeling kinda yuck.  Here's hoping this one will be more of the same.  If it's going to make me lose my hair, it'll be this week, after 2 straight doses, it might be time for another drastic hair appointment!  I'm really hoping not though, I love my hair!!! So, fingers crossed for me please! I know it should be no big deal, so inconsequential in the grand scheme of things...but when, like me, you've been through so many side effects, it would be nice just to keep my curls!!! Positive wishes for tmw please!!! xoxox

1st Halaven treatment down...

Had my first new chemo treatment Tuesday; today's Thursday and I'm still feeling it.  Although, I'm never sure which med to blame, the Halaven or the XGeva (Denosumab.) It's a mixed bag, I'll blame the stomach aches and pains on the Halaven, and the sore joints and feeling 1000 years old on the XGeva.
No issues with actually getting the treatment, smooth sailing, although for a quick injection it still took 2 and a half hours in and out of the hospital.  Thank goodness Will was there with me, keeping me company and keeping my spirits up since:) Our dogs are thrilled to have me on the couch so much; I've been working mornings and sleeping/resting afternoons.  It worked out well that I like to work mornings, and mornings are really the only time i feel up to working; as the day goes on i feel less and less like myself and more "sick." Then by 8 ish I'm ready for bed:) Poor Will, I'm sure he didnt expect old age to come quite so quickly!! Wonder if we can start getting the early bird specials when we go out...:)
I found another massage gift certificate in the cupboard today (thanks to Cheryl Bovard!) and plan to use it soon. Massage and the heating pad are my new best friends. Thanks for all the notes and support!

Halaven

Alrighty, here we go again:) As suspected form my numbers, the last med hasn't been working, so I hafta go on a chemo called Erubulin or Halaven.  My onc went over the scans with me today, and Colleen came with me just for fun:) The scans showed definite disease progession, especially in my liver (15 spots) and in my bones, most in my spine.  I'm not surprised, I've had some pain in my upper back for the last 3 weeks or so.  I'm going to see a spine specialist later this week, see what they see and if they can help with the pain.  
I'm also switching to a new bone-building med called Denosumab; the onc is worried I've been on Zometa too long, something about a risk of paradoxical fracture.   If anyone has any experience with either Eribulin or Denosumab, I'd love to hear, especially about side effects.  The side effects I've read about so far for Eribulin are the typical chemo ones; fatigue, nausea, hair loss.  I'm ok, happy there are still options to keep trying, and hopeful that this one will work for awhile.  Thanks for checking on me!! And thanks for going with me, Col:) Love you.

Welcome back! :)

Smile, I haven't kept up well with my blog because not much of interest happening...I've been feeling well and no big scary news to report. :)
I went today for my every 3 month PET scan, had to go to Strong first for my IV, then on to the PET scan place - where my IV promptly fell out.  They tried to put one in, searched everywhere for a vein, were very confident, tried to put it in my FINGER and failed.  Reschedule.  Luckily I have lots of free time next week, and come to find out, they can directly inject the radioactive dye for people like me who have a hard time with veins.  Why didn't they tell me this 5 years ago? Excellent question, I wonder the same, but at least from here on out they will direct inject into a vein instead of having to thread in a catheter. Yippeee:)
I'll report back with news of PET scan results next week. My blood numbers have been steadily increasing since we ended the last chemo and started the hormonal treatment, meaning it's not keeping things under control and I'm pretty sure they will have to put me back on chemo after they see the PET results.  Plus my back hurts, in the same place they're concerned about some spots they saw last time.  Or maybe some lovely radiation? That helped with the pain and prevented spread last time...wait and see what the oncologist says on June 10.  Take care and enjoy the hot weather (from inside with the ac blasting:))

Great news!:)

Doxil is working, doing its job at keeping most of my cancer under control:) we decided today to do one more Doxil treatment today, and then to start on another hormonal treatment called Fulvestrant next month. The reasoning is: my body (specifically my heart) can only handle so much (typically 10 tretments) Doxil or other similar chemos; I've had 3, today is 4th. So we used the Doxil to get control of my cancer; now that it's under control, we can go back to the slower acting hormonal treatment and hope that keeps working longer term. The best news is that my liver lesions have completely resolved, no trace of them on my PET scan from last week. There are 2 spots that seem to be resistant to the doxil, so if the Fulvestrant doesn't work on them, ill probably have to have radiation for those spots. The only complaints I have with the doxil are minor: mouth and throat sores the second to third week after treatment, dry hands and feet throughout, and weight gain from the steroids. Will says "Assept!" , so ill suck it up (or in) as long as its working! Woohoo!!:)

Doxil #3

Happy almost February!:) My favorite month...mostly cuz it's my birthday and because my better half already gave me prezzies!!:) Anthropologie loves me, and I love them.  PLUS my sister in law found a replacement of the beautiful coat i had last year from Anthro and bestowed it upon me as a surprise:) PLUS massage certificates...She's the best!!! (dear leanne and jill, in case this makes you jealous...love you!!)
Anyway, it's Monday, Chemo day, and I'm home now, resting and going back to work tomorrow.  Doxil hasn't been bad, and talking to the NP this morning emphasized that for me; very few side effects, just some nausea and mouth/throat sores.  I got some special numbing medicine this morning in case i get them again.  I did the whole ice on my hands and feet routine and ate 4 edy's popsicles:) in hopes of keeping the chemo from pooling in those areas.  I'm not sure it helps, but I don't want to not do it and have the side effects get me!!
The NP said this morning that one of my markers went up this month, the other one went down. (Puzzled face?) So...definitely not conclusively treating my cancer.  But one more treatment today, see what the numbers look like and a PET scan late Feb to determine if i need to switch to a different chemo.  Really hoping this one is working, it's not so difficult as chemos go, and ideally each treatment works for a lot longer than 3 months...
I'm good, please send all positive thoughts and well wishes to Carolyn's sister this week, in hopes we can ease her journey with this horrible disease just a little.  Fucking cancer.  Also, I just reread Carole Radziwill's "What Remains"...awesome read, but don't be afraid to cry, good reminder that even tho i'm the one with cancer, Will is going through his own experience with all of this and I'm beyond blessed to have him with me.   MWUH!

not so happy

Had my 2nd dose of Doxil on Monday, a shot of Neupogen on Tuesday....and a dose of kick my butt yesterday and today:(
I'm not nauseated, so i really am trying not to be a baby, i know it could be much worse, but my back is  not happy!! It feels like someone removed my spine from my body, cracked it like a whip or one of those pretty ribbons in gymnastics, then put it back in.  Every time i change from seated to standing (which is a lot!!!) or vice versa, it takes my breath away as it ripples around in there.   Goes away after maybe 15-20 seconds.  NOT. HAPPY.
I'm gonna make an appointment for a massage soon, and I have lots of fancy pain relief creams and whatnot to try from my chemo care package:) Plus Suzi and Curt gave me 2 more massage gift certificates - yeehaw:) I love being spoiled.  I don't love being in pain tho, and i guess i've gotten off easy up 'til now...it's funny because at my last dr appt, they asked, as they always do, how my pain level was, and i said it was great! I was actually starting to wonder if i should decrease my pain meds...oopsy, guess not! Thank goodness for pain meds. And loving husbands;)