Lucky me:)

No, seriously, after the past couple weeks i now really realize how lucky, how healthy, I've been for the past 6 years! Since my last chemo (Dec 30) I've been feeling sick, nauseated, throwing up and in pain. Damn! it seems worse when i read back over it!
Colleen and I went to Iceland and had a fantastic time, and I think Col probably lost some weight cuz i was a terrible restaurant date! Thank goodness I felt well enough most of the trip that we experienced Iceland to the max:) It is stunning!!
Anyway, I had a PET scan last Tuesday after we got home, and the results were not good.  As we suspected from my tumor markers, this chemo hasn't helped at all, and the cancer shows marked progression, particularly in my liver, which is always the biggest concern.  That also explains why I'm feeling so crappy and the pain I have in my abdomen. Dr Hug says that what I'm feeling is caused by the cancer progression, as well as a reaction to the chemo, so no more of that chemo since its not working anyway.
On Monday, I'll begin one of two new chemo options, either Gemcitabine or  Navelbine, depends on Dr Hug's team meeting and feelings, as well as my own research.  They seem similar in their lack of severe side effects.  Fingers crossed that this one can knock the cancer back down again and let me feel better!

Brain MRI clear!

Dr Hug called today with good news, no mets on the brain scan :) woohoo! Also just home from eye dr and he sees nothing scary either. So what's causing my visual weirdness? He thinks could be an ocular migraine (vasospasm in the eye) or just dry eyes from meds. So, using lots of eye drops and going back in 2 weeks. Yay!!!thanks for all the prayers and positive thoughts:)

MRI tomorrow- send me lots of prayers please

Brain MRI tmw because I've had some strange vision stuff going on, bright lights and shadows , sometimes blocking my vision when I'm reading the captioning on the tv. Also had a weird experience on the cruise where I was signing to Will and my arms just kinda went weak and fell down into my lap. So, MRI tomorrow to see wtf. Fingers crossed and lots of good healing thoughts my way, please. I live in denial quite happily most of the time;) hopefully can go back to ignorant bliss after these results:)

Happy New Year!

Here's to a happy, healthy new year for us all!! Unfortunately my Ixempra treatments aren't working (my tumor markers are the highest they've ever been) so after PET scan later this month I'm assuming I'll switch to a new protocol.

It's so disheartening because when a treatment doesn't work, it basically means that the cancer has been growing unchecked for the past 6-8 weeks, will be almost 10 weeks by the time they confirm with PET scan then a crap shoot to see if another treatment will work.  And this time, I'm definitely feeling it...whether it's chemo side effects or the cancer, who knows, but my liver and bones hurt, feel like i have the flu, chills, runny nose, and can't eat anything.  Well, i had half an almond joy candy bar yesterday;) and Leslie and Chris cooked us a lovely NYE meal of garlic parm shrimp pasta that smelled amazing and that I could not even get past my lips:( Had a couple sips of Will's Sam Adams beer, tho so I think I'm getting all my food groups! Don't worry, Will ate my share;)

Colleen and I leave for Iceland to see the Northern Lights next Wednesday, i have to be feeling better by then!! I have cute snow pants to wear!! fingers crossed!!!

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:)