Tuesday, December 27, 2011

Two Weeks Post-Surgery

Today I got the final drain out, and I feel so much better both physically and psychologically...no more tubes hanging out of my body.  My incisions look good, all dressings are off and I am supposed to apply Aquaphor a few times a day to help minimize the scarring.  I am feeling occasional shooting pains in my right breast, and a hard lumpy area...apparently the pains are not uncommon for a radiated breast...and the lumpy area is most likely fat necrosis, which may resolve itself or may have to be removed by the doctor later.  But in general all looks good, and I don't have to go back to the doctor for three weeks.  I will probably have the surgery to remove the nipple, and for him to do any 'touch-ups' needed, some time in February.

I am feeling like I want to get up and do things...but physically I still can't do much, so that's a bit frustrating.  I can't stand up straight, because my stomach feels extremely tight and sore; my back muscles spasm because my abs can't help support me; and I need to sit back down pretty soon after getting up...I still get tired out after a short walk to the next room.  But I am allowed to do any activity I want, and lift things if I want, as long as I listen to my body and take it slow and easy.  So it will be a gradual shift back to normal, as my body recovers.  I'm so happy to be able to lift Griffin into my lap again (he kind of helps climb in as I lift slightly, using my elbow on my knee as leverage).  I was able to sit in bed with the girls last night and read them their bedtime book; these little bits of getting back to normal life are encouraging. 

I tried to go off the Percoset yesterday, onto Tylenol, but after missing two doses I realized that I wasn't ready...I really felt the difference, had lots more pain.  So I'm going to try alternating the two for a few days, and see if I can gradually reduce the Percoset. 

We had a lovely Christmas...lots of wonderful gifts, good food, and joyful family time.  I enjoyed the gift opening from the comfort of a chaise lounge by the tree.  It is very hard to absorb the fact that the reconstruction, and this whole cruddy year, is over and done with.  Back when I was diagnosed, the recon seemed so far away and unreal...and now it's done, my tummy is flat, and a new year is about to start.  I pray that 2012 turns out to be a good, cancer-free year...for me, my family, and everyone I know.

Many many thanks to Stacy, Maria and Steve, Kara, Beth, and Tasia, for the wonderful meals and snacks the last few days before Christmas! We have been so well-fed during my recovery...what a blessing.  I can't express how grateful I am for the support, help, prayers, and good thoughts that have been coming my way during this whole ordeal.  I couldn't have gotten through the year without it!

And to close, here is a photo to show off my new flat tummy (the new boobs are a bit hidden by my stooped posture...you'll have to wait a bit to see how they turned out!):
Love to you all,
Liz

Wednesday, December 21, 2011

One Week

I made it through the first week post-surgery.  Sunday was the hardest day...the pain pump ran out and I suddenly had a lot of pain, plus I got very emotional (maybe related to stopping the tamoxifen for the week, which could be effecting my hormones).  But in general, I've been resting fairly comfortably and doing a little better every day; the percoset is doing it's job and the pain is manageable.  The hardest part, actually, is the discomfort in my muscles from just sitting around so much...I've got spasms in my back.  I just can't get up and move around much yet; just a trip to the bathroom is tiring.  I'm trying to start stretching as much as I can without involving stomach muscles.

Today I went for my one-week appointment.  Nurse Britney removed two of the drains, so I'm now down to one.  She removed a bunch of other things as well (dressings, staples, tubes), and said my incisions are looking really good.  The trip there and back, plus having her mess with everything, was pretty exhausting...I felt faint and out of breath the whole time (Britney suggested I try not to stoop over so much when walking, since it shortens my lung capacity...but it's hard not to).  Thanks to Mom for driving me there, and also for learning to give me my last two Lovenox shots...one more to go.  A big thanks to Marilee for giving me the first few, and walking Mom through the process!

Huge huge thanks to Kimberley, Lisa L, Adrienne, and Jessica C for some extremely delicious meals!  We are so blessed to be receiving this help.   I hope you all have a wonderful Christmas/Hanukkah/Solstice/Kwanzaa etc., and I'll update again next week.
Love,
Liz

Sunday, December 18, 2011

Home Again

I'm home from the hospital!  Dr. Davison walked in to my room around 1pm, saw me sitting up in a chair with my laptop, and said anyone who is able to sit up and work at the computer does not need to be in hospital.  Little did he know that I was fast asleep sitting straight up when he walked in!  But I did feel ready to go, and am so glad to be resting in my own bed again.  I got home around 4:30pm on Saturday.

Dr. D said the surgery went as well as it could go, and everything looks great.  The flaps are working perfectly, and I didn't need a blood transfusion (as some women do, especially if their hemoglobin is already low from chemo).  My tummy feels extremely tight, and somewhat painfully bloated with gas.  It really hurts when I move, sneeze, cough, laugh, burp, or hiccup...so am trying not to do those things too much!  It sure looks flat, though!  My plastic surgeon commented several time that I had the ideal stomach for this procedure, and that he'd never seen such a wonderfully loose saggy tummy....thanks, I guess?

The results are going to be very rewarding.  My new boobs are much softer than the expanders, and so far look pretty good, considering.  One weird thing...he was supposed to remove that pesky nipple, we talked about it several times...and then during surgery he forgot!  I was counting on waking up from surgery with that taken care of.  He says he was so focused on getting the flaps secured, that he didn't remember.  So now it has to be taken care of at a later time. 

In the hospital, I had so many tubes and wires sticking out of me, it was pretty crazy.  I'll see if I can list them all: oxygen cannula in the nose; pulse/ox monitor on a finger; blood pressure cuff on the arm; various colorful wires connected to sensors on my chest; a continuous pain pump into my abdomen; an IV to deliver fluid, antibiotics, and pain meds;  a thing called a biotech (I think) that had two sensors stapled into my skin, one on each breast, that was supposed to sound an alarm if the blood flow was failing in the flaps (this machine stopped working correctly, though, so the doc removed it, and dopplers were used to check blood flow); a urinary catheter; four drains, two in the breasts and two in the abdomen; and squeezy things on my legs to prevent blood clots.  I was disconnected from most things by Saturday morning, leaving only the pain pump and the drains, which have to be emptied several times a day.

I also have to have a shot of Lovenox once a day for five days...that's a blood thinner to prevent clots.  Nathan gets whoozy at the mere thought of having to administer an injection...and I don't think I could do it to myself.  So Marilee, midwife extraordinaire, is coming to do it for the first three days...thanks Marilee!  If anyone else out there is experienced at giving injections, and could come over on Wednesday and/or Thursday, please let me know.

We have already had several delicious meals delivered...thank you so much Lisa L, Tasia, and Maya!  And thanks in advance to everyone who signed up to bring food...we are overwhelmed by your caring and generosity. 

I'll post more later.  Love to you all, and Happy Holidays!
-Liz

Friday, December 16, 2011

Post-Surgery Update

Hello everyone...I made it to the other side!  The surgery was successful, so far the 'flaps' are healthy and working, and I got through the first day with no complications.  I have lots of pain in my abdomen (from the tummy tuck), not much pain at all in my breasts.  As long as I sit here not moving, the tummy pain is tolerable...and I have a little button I can push every ten minutes which gives me more pain meds.  But yesterday they made me get up for a short time...and that trip to the chair was really difficult.  Today they want to get me up three times, and take out my catheter...so I'll have to get up to use the toilet.  Not looking forward to that at all.  I had a nice visit yesterday afternoon from Lily and India, and Emma, Mom, Dad and Nathan have all been  here too...and they (plus my brother Paul) all have been helping to take care of Griffin.  I miss Griff so much...but didn't want to have him come here until I'm out of the ICU (which I am supposed to be, but they don't have a room for me yet).  I can't hug anyone yet, and would be afraid that he would kick me in the belly or something...and he might be upset and confused that he can't snuggle with me.  It was hard enough not being able to give the girls a big hug.  But I'm feeling better and better, so hopefully by tomorrow having the kids visit will be easier.  I am pretty sleepy and drift in and out of sleep constantly.  I'll post another more detailed update soon.  I so appreciate all your good thoughts and prayers...and a huge thank you to everyone who has brought a meal or has signed up to bring one...so amazing to have all of you supporting us!

Saturday, December 3, 2011

Surgery Coming Right Up

Hello friends.  It's been a while since I last posted...because there hasn't been much to post, thankfully!  Looking back at my last update, I am reminded how scared and depressed I was right after radiation was over...but I am happy to say that I feel much better now, and nearly back to my old optimistic self.  I feel upbeat most of the time, with only occasional brief returns to the fear.  Even the weaning thing has gotten easier...I mostly feel wistful when I imagine how nice it would be to lie in bed nursing Griffin rather than giving him a bottle...instead of feeling angry and sad as I used to.  Okay, I lied...I still feel sad about it...but it's getting better.

We had a wonderful Thanksgiving, including a visit from Nathan's dad and lots of good food and family time.  So much pie! I think I gained back a few of the pounds I lost during chemo!  I've been busy preparing for Christmas, because I want to be done with everything by December 14, my surgery day.  I have nearly finished my shopping and wrapping, we have decorated the tree and house, and we're trying to cram in as many fun holiday activities with the kids as possible.  I'm sad that we won't be able to host our annual caroling party...that's one thing we can't do early.  We did get our family Christmas picture taken early this year.  Since our last year's one is at the bottom of this blog, I'll go ahead and post this year's...

For anyone who hasn't heard, I'm getting a DIEP flap procedure done.  That is a breast reconstruction technique that takes tissue and skin from your abdomen, and uses it to form new breasts.  It is micro-surgery (the blood vessels in the 'flaps' of tissue need to be reconnected so they can survive).  It will also mean that I get a tummy tuck and repair of my abdominal separation...yay!  I'll be left with a scar from hip to hip, as well as a bit of a patch-work look to my breasts...but all the scars will fade a lot over time.  The controversial nipple will be removed at this surgery...a new one will be reconstructed in a few months. 

I'm looking forward to this surgery in lots of ways...especially eager to get the tissue expanders out, as they are still pretty uncomfortable and weird...and excited about losing my grand mummy tummy...and glad to be getting the very last leg of this journey over with.  But of course I'm getting pretty nervous about it as well, and worried how the recovery period will be.  I know I'm in good hands...but it is freaky to think that my body is going to be cut open and 'rearranged'.  Better not to think too much about it. 

Our helping hands calendar is back in action...many people have already signed up to bring dinners after the surgery...thank you so much!  Here's the link for anyone who doesn't have it: https://www.lotsahelpinghands.com/c/636569/login/  We so appreciate the help and support.

I hope you all have a wonderful holiday season, with much joy and fun and time spent with family.  Please think of me on the 14th, and send as many thoughts and prayers for a successful surgery as you can.  I'll post an update as soon afterward as I can.

Love you all,
Liz

Friday, October 21, 2011

DONE!!!

Tuesday, October 18, was my last day of radiation treatment!  It is really hard to absorb the fact that my cancer treatment is over (except the tamoxifen, which I'll take for five years).  As with every other part of this intense journey, I'm experiencing a lot of emotional ups and downs right now.  Of course I am thrilled and relieved that I'm done, that I have two months 'off' now to just BE, and then I get to have my reconstruction before the end of the year.  But mostly right now I feel fear and uncertainty...fear that now that treatment is done, the cancer could come back (or a new cancer could start) at any time...uncertainty about my future.  I'm afraid to get too attached to my new hair...what if I just have to lose it all over again?  Afraid to think too much about being done, about it being over...because what if it's not?  I keep hearing that I should think positively...so I will try...but it is very hard.  I think it will get easier with time, but I believe I will always have this fear in me which will rear its head periodically.  I continue to attend the monthly support group for breast cancer moms, and it is very helpful...but I might need to find another group that meets more frequently.

The radiation sure did a number on my skin.  It wasn't bad until the 5th week...then things got pretty yucky.  Think bad sunburn times 100.  Dark, dark purplish-red, shards of brown skin peeling away, raw pink skin underneath.  Painfully prickly/itchy.  But it's already so much better than last week...it's healing fast.  The last 8 treatments were 'boosts', which focused only on the scar...so the rest of the area has been healing for a while now, and is doing much better.  I was worried, when I realized how bad it was getting, that it wouldn't be healed in time for my reconstruction, but both the radiation oncologist and the plastic surgeon have said they are sure it will be fine. 

The last week of radiation was complicated by a fever, which lasted over a week actually, and a really bad cough.  It brought back some bad memories of when I had the neutropenic fever during chemo, and the bad cough I had then that lasted 6 weeks.  My radiation oncologist ordered a chest x-ray, to rule out pneumonia, and put me on antibiotics just in case...but it was probably just some nasty virus.  I am finally feeling mostly better...still some coughing fits, but the fever is gone and my energy is returning.  I saw Dr. Kim, who recommended some new remedies...oral colloidal silver, and two homeopathic tinctures (one made of mushrooms---who knew mushrooms have anti-cancer properties?!).  I think the colloidal silver helped kick the virus...and the tinctures are something I will take long-term as cancer-fighters. 

I had a lovely little last-day-of-radiation celebration, a mom's-night-out at the Cheesecake Factory with a bunch of wonderful friends.  Thanks everyone who came, for helping me mark this special day, and for letting me share some of my not-so-happy feelings, and for being so supportive!  And for writing me positive thoughts and affirmations to put around the house...they are going to be so helpful.  Nathan also brought me a beautiful bouquet of roses, and chocolate-dipped strawberries, to celebrate the day.  It was wonderful, the next day, not having to go to the hospital for any reason!  I have a couple of appointments coming up in the next few weeks...but overall, it's going to be a lovely doctor-free period of time.

Thank you all for your continued support.  I will keep you posted, and will of course let you know how the next surgery goes.  Three down (chemo, mastectomy, radiation), one to go (reconstruction)!
Love you all,
Liz

Tuesday, September 27, 2011

Half-Way Done

Yesterday I had my 17th radiation treatment...so that is half-way done!  No major side-effects noticed, although my skin is getting redder especially on my chest and under my armpit.  Interestingly, I have a patch of radiation burn on the back of my shoulder as well...apparently it is an "exit wound" of sorts.  I'm continuing to slather on lotions and aloe many times a day.

Last Saturday found me getting up and out early...not to go to a midwifery class or music teacher's workshop, as I would have done in my previous life...but to the Cancer Survivorship Conference at Life With Cancer in Fairfax.  It was a good experience, very motivating as far as improving diet and exercise habits to maximize health, and I learned some strategies to deal with the emotional aspects of being a survivor.  It is a mixed blessing to be in a room full of cancer survivors, though...on the one hand, it helps to be with people who are going through the same things you are, and to meet women who are long-term breast cancer survivors...on the other, it is very hard to see all the head scarves and be reminded of chemo, and to meet women who have had recurrences or who survived breast cancer but now have a secondary cancer.  But all in all, I'm glad I went, and am very appreciative of this no-cost opportunity. 

This coming Sunday, October 2, I'll be going to Richmond to walk with Emma, and some members of her sorority,  in the Making Strides Against Breast Cancer walk.  I'm looking forward to hanging out with Emma for the day, and hopefully the walk will be uplifting (and will do some good...we'll be 'creating more birthdays' as the American Cancer Society slogan says...).  Here's the link to my page: http://makingstrides.acsevents.org/site/TR?px=22962404&pg=personal&fr_id=36177.

A huge thank you to Heather and Hope, who rode 100 miles on their bikes on September 18th, in a Century Ride to raise money for me!  And a huge thank you to everyone who donated money to me through the ride...I am so very very grateful!  Heather and Hope, you are amazing and inspiring.

So I am still feeling pretty good physically, although a bit more tired over the past few days...not sure if that is related to the radiation treatments or not.  My hair is starting to come in a bit curly! And gray!  I think some hair dye is in my future.  Emotionally, I've hit some rocky periods again...not sure if that is due to the tamoxifen, or just the usual emotional roller coaster ups and downs.  Sometimes it all becomes too much, and I feel pretty depressed...but there are happy times too.

The girls are doing well in their new school.  I am enjoying walking them to and from, with Griffin in the stroller...it's so nice to be able to do that, rather than driving down 395 twice a day.  Griffin is cute as can be, but a real handful...all boy, and getting more active every day.  My kids bring me such joy!

Well, I will post another update soon when I'm done with radiation...it sure is going by quickly.  Thanks to everyone for your continued support and concern.  And a big thanks to Sara for coming over today to watch Griffin while I went for my treatment!
Love you all,
Liz

Tuesday, September 13, 2011

Surgery Date is Set

So I decided that I don't want to wait until January to have my DIEP Flap surgery (the reconstruction).  These expanders are just so uncomfortable (the rib pain is not getting any better), plus psychologically it would be good for me to finish everything this year, and start the new year fresh.  I was hoping to do it at the end of November, or beginning of December, so it wouldn't be too close to Christmas...but the only available date was December 14th.  I debated a bit...it's a 4 to 6 week recovery, and I don't want to mess up Christmas for the kids...but decided to go ahead and do it.  I plan to get all my holiday shopping, wrapping, etc done before the surgery, and then enjoy the actual day from the comfort of the sofa. 

Good news: I got the pancreas biopsy results back...it was benign.  Whew, a big relief.  The doctor recommends getting another MRI in a year, I guess just to monitor for any changes. 

Radiation continues to be uneventful.  I am getting a slightly red area on my upper chest, which looks like a mild sunburn.  I'm putting aloe and lotion on many times a day, and hope that it won't get any worse. 

I happened to be surfing around the National Cancer Institute website and found a "Breast Cancer Risk Assessment Tool" (http://www.cancer.gov/bcrisktool/).  I thought, hmm, I wonder what my risk of getting breast cancer is, according to this tool?  I answered the questions as I would have when I was 40 years old (three years ago, in case you don't know!)...and it estimated that I had a .5% chance of developing breast cancer in the next 5 years (the average 40-year-old has a .6% chance).  Wow, how did I manage to be the 1 in 200?  Who knows how useful that assessment tool is, really...but it just added to the "why me???" feeling I've had all this time. 

Which reminds me, if you are a woman who is 40 or older, please go out and get a mammogram, and a clinical breast exam!  The best protection is early detection!  If you want to learn more about breast cancer, VA Hospital Center is hosting "Ladies for Life: a free breast cancer education event for women of all ages", Saturday, October 1, 9:00-11:00am.

Love you all,
Liz

Saturday, September 3, 2011

Radiation Begins

I have now had two radiation treatments.  Turns out, even radiation oncologists take Labor Day off, so I have three days off, then back to going every week day.  Now that everything is in place, the treatments are very quick...I show up at 1:30 and go straight to the changing rooms, get my own gowns and change, and then sit down in the lounge; I barely have time to open a magazine before they call me in; I get into position on the table, and have to pretty much lie there limp while they scooch me into just the right spot by pushing and pulling on the sheet underneath me (it's hard to resist the urge to help, but they don't want you to, you have to let them do it); they put a warm wet cloth over my breast area, called a bolus I think, to increase the radiation near the skin; then I lie there not moving while the machine does it's thing, for about 5 minutes--it rotates around zapping me from different angles--I don't feel anything.  Then I'm back to the changing rooms...about a 20 minute visit in total. 

The girls and Nathan made a paper chain for me, with 33 links.  They wrote little messages on each link, and I get to tear one off after each radiation treatment.  A great way to count them down, and a nice boost to read the sweet and funny messages.  I am also slathering on lots of stuff, to try to prevent radiation burns to my skin; my mom took me to Sandra Cope, a woman in Old Town that makes special lotions and has a reputation among breast cancer patients.  She sold us two bottles of fresh cut aloe vera gel, as well as two kinds of creams.  I soak a cloth in the aloe and apply it to my skin right after each treatment, then rub on the cream several times a day.  I'm hoping it will do the trick.  Thanks to Libby Garvey for telling us about Sandra!

The endoscopic ultrasound and biopsy last week was not a lot of fun.  I'm not sure why it upset me so much, because I've been through worse...I think it was a combination of the fear that I've been keeping at the back of my mind all this time that it would turn out to be pancreatic cancer, and that having to be back in the hospital getting poked and prodded brought back unpleasant memories.  Of course I didn't feel the procedure itself...they put me under.  The worst thing to me was a plastic thing they stuck in my mouth, to open it and protect my teeth during the procedure...but they didn't warn me ahead of time, and suddenly stuck it in there...I couldn't swallow, and it felt like a gag was put on me.  I like to know what's coming, and I wish they had explained it first, and told me that I would only be aware of it for mere seconds before going to sleep.  Anyway, the good news is that the doctor told me right afterward that he didn't see any signs that the cyst is cancer, it still looks very benign to him; unfortunately, though, I have to wait 6 weeks for the pathology report to come back to be absolutely sure.  I have heard 'it looks benign' before, so I won't fully relax until I get that report.

All is still good with the tamoxifen...the very slight nausea I was feeling is gone, and the hot flashes are minimal.  I have added more supplements to my daily pile of pills...bee propolis and bee pollen (recommended by Sandra Cope), Quercetin (an anti-oxidant), Seratran (to 'repair, rebuild, and reactivate'), and most days I take probiotics.   I am still juicing, and have a glass of fresh veggie juice first thing every morning.  Physically, I feel pretty good in general--a normal energy level and a desire to get out and do things. Still experiencing a lot of rib pain on one side from the foob...but otherwise good.

It has been a very strange summer, all in all...I've been through a lot, but it has also been very nice being at home with the kids and just bumming around.  I think we are all ready to get back into a normal routine, though...the routine of school for the girls, playgroup/music class/nap time for Griffin, and daily radiation for me.  I hope there is a healthy, normal, uneventful fall in store for my family...and for all of you too.
Love you all,
Liz

Monday, August 22, 2011

A Year

It's been one year since I first felt the walnut-sized lump in my breast.  Last August I was happily nursing my four-month-old, thinking I might have some kind of infected lymph gland...totally unaware of how completely my life was about to change. I really miss my old life.

Last week I had my CT simulation for radiation therapy.  They had me lie on the table so they could position the arm rest, head rest, knee rest etc. exactly right for me; they took photos and a CT scan, so they can create a computer model of me for planning my treatment; I got drawn on by my radiation oncologist (I'm getting rather used to being drawn on); and they tattooed two little dots on my chest, as markers so the radiation beam is aimed exactly the same each time (I didn't feel one of the dots, as it is in my numb area, and the other felt like a little pinch).  I will go back for a 'dry run' probably some time next week, and then will start the actual treatments--which will be every day, five days a week, for a total of 33 treatments.

This week I am finally following up on that pancreas thing.  Wednesday I will have an endoscopic ultrasound and biopsy.  I'll be put to sleep, and then the doctor will send a little ultrasound device down into my stomach so he can look at the cyst on my pancreas...and then he will do a biopsy of it through the stomach wall.  I'll be at the hospital for three hours.   I am pretty nervous about it, but trying to remain calm and positive.

My foobs are feeling a bit better, or I guess I'm just getting more used to them.  At a recent visit to the plastic surgeon, I got my first 'fill'--75 more cc's of saline added to each expander, for a total of 375 cc's.  After the fill, my muscles felt better but my ribs hurt a lot more...that is the main discomfort I have now...it's really painful to bend forward, like the top of my rib cage is being crushed by the foob-rocks.  The way they fill the expanders, in case anyone is wondering, is this:  a magnet is run over the breast to find the metal port inside the expander; when found, they mark the spot with a pen; then they come at you with a GIANT syringe of saline, which scares the hell out of you--but then you realize that you can barely feel the needle going in.  It feels strange as the fluid goes in, like it's getting tighter and tighter, but not painful (except the ribs as I mentioned).

I've been on tamoxifen for a few weeks now.  I've actually experienced a slight decrease in hot flashes, rather than an increase.  I was a bit worried, as I've read that an increase is a good sign that the medicine is working, but my oncologist told me not to worry...it just means that my ovaries might be waking up a bit from the chemo-induced hot flashes.  The only other side effect I've noticed is a vague, mild queasy feeling that will come over me a few times a day, which passes after just a minute or so.  So all in all, so far so good.  I've never been a pill-taker, never used to take even a multi-vitamin...but here is what I take now every night before bed: tamoxifen, vitamin C, vitamin D, B-complex, Cal/Mag, Immune Defense with IP-6 (boosts killer cell activity), and a digestive enzyme.  It helps to swallow them all with dark chocolate almond milk!  I'm also taking homeopathic arnica for the bruised ribs, and a homeopathic remedy called Lymph Tone, to help with lymph drainage and flow since I am now a bit short on lymph nodes. 

Emma is off to her senior year at Virginia Commonwealth University.  Lily and India are gearing up for the new school year...they have been shopping for their school supplies and new shoes (both had huge foot growth spurts this summer).  They are excited to be starting at Patrick Henry (in 5th and 1st grades respectively), our local public school...finally they will be going to school with their neighborhood friends.  Griffin is the cutest 16-mo-old ever, and is doing all kinds of amazing things: climbing ladders, walk-running REALLY fast so that mom can't keep up, kissing and hugging his sisters, learning the names of different Thomas the Train engines (they all look the same to me), and saying a few words (uh oh, beep beep, baby).  He seems to be entering the 'terrible twos' a bit early, with frequent screaming and tantrum-like behavior...which I believe is due to not being able to nurse.  Nursing diffuses toddler frustration like nothing else.  We never experienced the terrible twos with any of the girls.  My heart aches with sadness at the loss of our nursing relationship.

Well, that's all for now.  I'll keep you all updated on the test results this week and the upcoming radiation treatments.  Thank you so much for your continued support and good thoughts and prayers.

Love you all,
Liz








Sunday, July 31, 2011

A New Normal

I have foobs.  That's fake boobs.  It's slowly becoming my new normal...but it hits me all over again at least once a day--my breasts are gone, and one nipple will soon be gone too.  I think it will be a lot better once the reconstruction is done, though...then at least my foobs will be made of my own flesh, instead of these heavy, hard, uncomfortable expanders. 

I also have brand new eyebrows and eyelashes!  And I'm shaving my pits and legs again...yay.  My head is sporting a crop of fuzz...not really a head of hair yet, but I have stopped wearing hats and scarves in public.  It's just too hot, plus I'm really tired of wearing them.  I donated a bunch of cancer hats to the Cancer Resource Center at the hospital...they have a 'hat room' for people who need them.  And I'm going to send back the wigs and scarves that my Aunt Mary loaned me.  It feels good to be purging my house of these things.

I start taking tamoxifen tomorrow.  One pill a day for 5 to 10 years.  It is supposed to increase the hot flashes...it's actually a good sign if it does, because it means it's working.  There are also some other possible minor side effects, and a slight increased risk of uterine cancer.  That worries me, but I'm going to concentrate on the benefits--it's going to help keep cancer cells from growing back!--and try not to worry about it.

This week I saw a physical therapist, who taught me all about lymphedema and strategies to try to prevent it...and gave me exercises to strengthen and stretch my shoulders and arms, to get my range of motion back.  So now it's up to me to actually DO the exercises, plus try to do some kind of regular exercise like walking...things I am not used to making time for. 

This week I also had a counseling session, and went to the support group...both were extremely helpful to me in dealing with a lot of my emotional stuff.  I also started driving again, although I haven't yet been up to going out alone with Griffin.  I still feel like I need help with him, carrying him and getting him in and out of his car seat etc.  He is a heavy and active toddler!  Going out with just the girls is fine, though...one of my first times driving was to take them for their school physicals.

I want to say a HUGE thank you to Heather and Casey, who are planning a fund-raising century bike ride which will raise money for us...a lot of their friends and family have already donated to us via the ride, and we are so very very grateful to them...as well as to other generous people who have also contributed money to us recently.  It is impossible to express how overwhelmed and thankful we are.  Some of the ways we are using this money: paying some of the smaller medical bills; prescriptions and supplements for me; splurging on organic veggies for my morning anti-cancer juice; buying new ultra-soft stretchy bras and camis to wear post-mastectomy; taking the kids to the doctor. Thank you thank you thank you!

It's hard to believe it will be August tomorrow...summer will be ending soon, radiation treatments will be beginning soon.  I'll keep you updated on how that goes.
Love you all,
Liz

Friday, July 15, 2011

Nipple Confusion

This week has been confusing and emotional for me.  After getting the 'all-clear' last week from my surgeon that keeping both nipples was safe, I got a call this week from the senior member of the surgical team at the Center for Breast Health; she told me that my pathology report had come across her desk, that a 2mm margin is not enough, and that she is very nervous about me keeping the right nipple.  My radiation oncologist agrees that it is a gray area, it would be very controversial to keep it, and he would not advise it, although it is ultimately my decision.  Unfortunately my surgeon is out of town for a month, so I can't discuss it with her and find out how she came up with the 2mm number.  Now that I'm doing more research on it, everything I read says I was not a good candidate for nipple-sparing surgery.  Luckily, I don't have to do anything right away...if I decide not to save it, I can get it removed later during my reconstruction surgery...so I have some months to figure it out. 

My appointment with Dr. Denduluri, my oncologist, was also emotional.  When I walked into her office, I was reminded of the first time I went in there to meet her after I was just diagnosed...and I started crying before we even began our appointment.  But she was very encouraging and positive.  I was worried that my pathology report was especially full of CAPITAL LETTERS (they put anything that was found to be cancerous in caps)...but she said it wasn't as bad as it seemed.  I do know now what stage my cancer was; stage IIIa.  She gave me my prescription for Tamoxifen, which I will start taking on August 1st...this is the hormone therapy drug which will keep estrogen from feeding any future cancer cells that might decide to appear.  I will take it for at least five years.  It is supposed to cause even more hot flashes--as if I wasn't having enough already.  I also got a prescription for physical therapy, which I am looking forward to taking advantage of; hopefully it will help me avoid getting lymphedema.

Meanwhile, I am recovering well from the surgery.  I took myself off the Percoset today.  I don't really need it anymore, and Tylenol is working fine.  The pain has lessened quite a bit, and I'm mostly feeling a lot of discomfort rather than pain.  It's a very weird feeling of being raw UNDER my skin, as well as a lot of pressure from the implants which feel like rocks.  My right arm still has a lot of numbness, and my armpit is completely numb...I hope that will gradually improve.  My strength is going to take a while to come back, I'm afraid.

I have had a lot of wonderful visitors this week, who have helped with everything from laundry to dishes to taking care of Griffin and the girls.  Thank you a bunch to Beth, Sara, Lisa, Jessica C, and Jessica H; and a huge Thanks to Kim, Arlene, Sara and Jess C for the delicious meals this week!  And I don't know what I would have done without the help of Emma, Paul, Mom and Dad, and of course Nathan.  Thank you Kerstin for being there for me when I needed you.  And thanks again to Rashne for a wonderful camp for Lily!
Love you all,
Liz

Friday, July 8, 2011

Update from Liz: Pathology Report

Liz writes:

"I saw my surgeon today, and got my pathology report.  It's very long and complicated, and I'll be going over it in more detail with my oncologist soon.  But here are the major points in a nutshell:
1. I get to keep my nipples!  There was just enough (2mm) of a clean margin to make keeping the right one safe, and the left one was fine.  Very glad about that.
2. It turns out doing the bilateral mastectomy was a very good choice.  Some stuff was found in the left breast, which never showed up on the MRIs or mammograms, that is abnormal.  Not pre-cancer, but kind of like pre-pre-cancer.  It's called atypical intraductal epithelial hyperplasia.  It might never have developed into cancer, but I'm relieved that I'll never have to worry about it.
3. My surgeon removed 27 lymph nodes, and cancer was found in 6 of them.  The report says metastatic carcinoma was found in the 6 nodes.  That word (metastatic) is scaring me.  The surgeon didn't mention it, but now I am very anxious to discuss this with my oncologist.  I think it means that the cancer had moved from the breast into the lymph nodes...which I already knew...but seeing the word in the report is scary.
4. There was a lot of bad stuff in my right breast:  multiple small spots of invasive ductal carcinoma, measuring up to .6cm; the larger and smaller tumors that were showing up all this time on the scans, which the chemo reduced but were still there, the larger one which was in a lymph node measuring 2.3cm;  multiple microcalcifications;  an extensive field of  high-grade ductal carcinoma in situ (DCIS--stage 1 breast cancer).  There are a lot of other technical terms in that section of the report, which I will be asking my oncologist to interpret. 
5. All of that bad stuff is OUT of me now!  I am in shock at the extent of the cancer (I knew it was bad, but seeing it written in the report made it so frighteningly real), but am relieved beyond words that it is now out of my body. 

I am so grateful that I will be able to get radiation therapy (starting end of August), which will be kind of like a "clean-up crew" coming in after the surgery/chemo and zapping any microscopic bad cells that might possibly be lingering.  And so grateful as well that I will be able to benefit from Tamoxifen, the long-term drug that will keep estrogen and progesterone from feeding any more cancer cells in the future.  I'm reading the book The Emperor of All Maladies--a Biography of Cancer; it's a fascinating book so far, and it makes me so thankful that I'm living in this time and have such a good chance of surviving.  Just in my lifetime, chemotherapy (the way it's used today, with combinations of drugs) has been developed from an idea to reality, and even more recently Tamoxifen and other hormone therapies have been invented.  To all the scientists and doctors who developed all these ways of fighting cancer, which used to be thought of as impossible to treat let alone cure, I am forever grateful.

A big huge thank you to Kara and Alexa, who brought us two more delicious meals this week, and to all the wonderful ladies who have had the girls over for playdates: Rashne, Arlene, Adele, Stacey, Janet, and Kathy!  Go Camp Green!  Thank you Kim, for your bravery and friendship, which has inspired me to also be as brave as I can through all of this.  Thank you to Kerstin Perini, of the Cancer Resource Center at the hospital, who came to see me twice in hospital and brought the lovely pink basket of breast cancer 'swag', which has been very helpful.  (If anyone wants to donate to help provide these comfort baskets to other breast cancer patients, here is the info: www.KeepTheCandleGlowing.org).  And thank you to my husband and family...there are not enough words...

I will post again after meeting with the oncologist and plastic surgeon next week, and keep you all updated regarding radiation therapy and the pancreas issue.
Love you all,
Liz"

Thursday, July 7, 2011

Post-surgery update

Liz writes:

It's over...the surgery is done, which is a big relief.  I had such anxiety about it, so I'm just so glad it's over with.  It went well, I slept through a lot of the first night and day afterward.  Whenever I was awake the first night, I felt pretty miserable, especially when the nurse made me get out of bed to try to pee...I got really nauseous and dizzy.  But since day 2, I've been feeling a lot better than I expected.  I got home about 5pm the day after surgery.  The hardest part right now is not being able to pick up Griffin and care for him, and not being able to give the girls a big hug.  The drains aren't fun (I have two drains coming out from each side, which drain fluid so it doesn't build up and put pressure on the surgical sites)...they need to be emptied several time a day.  My pain is being managed well by a continuous pain pump, as well as oral medication.  I'm taking antibiotics, vitamin c, an immune booster, a homeopathic remedy, and probiotics...to hopefully stay healthy and avoid infection.  My right arm is numb...hopefully that will go away soon, probably the swelling is pressing on a nerve on that side.  I have a good appetite, and am just resting, eating, drinking fluids, and sleeping.  Lots of family members and friends are helping with the kids this week, I am so grateful for that.  Thanks to Sara, and to Kathy and Topher, for some really yummy meals!  And a big thanks to my wonderful husband, my brother, Emma, and Mom and Dad, for being at the hospital with me throughout my stay.  And thanks to everyone for your thoughts, prayers, phone calls, emails, and facebook messages...it all has really helped me get through this!

I see my surgeon on Friday and will get the pathology report then.  Please pray for my nipples!  That sounds really weird to say...but keeping them is very important to me...so am praying that the biopsies taken from them will come back clean.  I'll post another update after Friday's appointment.

Love you all,
Liz

Wednesday, June 29, 2011

Post-Chemo Update

Liz writes,

"Hi Everyone,
It's been awhile, but thought I'd post an update about what's been going on the last few weeks. I had a post-chemo MRI, which showed that the larger tumor shrunk from 3.5 x 2.1 cm down to 1.5 x 1.3 cm. The smaller tumor didn't shrink as dramatically; it went from 1.8 x 1.1 cm to 1.5 x 0.9 cm. They can't tell from the MRI if the tumors are still cancerous, or if they are basically dead...we'll find out from the post-surgery pathology report. The area of abnormal calcifications is still there, but smaller and more defined rather than diffused throughout the entire breast (this has nothing to do with the chemo, but is probably because I'm no longer lactating).

I also received the results from my genetic test, and found out that I am negative for the BRCA-1 and BRCA-2 genes (the 'breast cancer' genes). This is good news, because it means that my children (and brother, and mother) are not at risk for also having the gene. My daughters already have a higher risk for developing breast cancer, since their mother was diagnosed at an early-ish age...so it's a relief that the risk isn't even higher.

I had a recent appointment with a pancreas specialist, about that cyst that was discovered on my MRI. He wasn't overly concerned, as it looks benign to him; but he still wants to do more tests to make certain. He recommended an endoscopic ultrasound and biopsy, which can wait until I'm recovered from the surgery. He did say that the biopsy has a 10% chance of causing pancreatitis...my father-in-law had that, and had to have his pancreas removed which caused him to be diabetic. So I am nervous about that test, and want to do more research about options. The original recommendation was just to get another MRI after 6 months, so perhaps that will be the way I'll go.

In addition, I met with my radiation oncologist for the first time, Dr. Hong. He said I definitely need radiation. He has a very good reputation, and I trust his judgment. I am scheduled to go back to him mid-August for a CT simulation...I think that's when they set up where they will aim the radiation beam, by tattooing little dots on my skin to mark the right spots.

Yesterday I met with my surgeon, Dr. G. She thinks the MRI results are encouraging. We discussed the surgery, particularly whether it was possible to do nipple-sparing surgery. She consulted with one of the other surgeons, and both of them agreed that it is possible, but there is a chance that I'd have to go back and get the nipple removed if any cancer cells are found in the tissue right under it. I decided I want to take that risk. She has to take the level one and two lymph nodes, since my cancer is definitely in them. So I signed a consent form for a modified radical mastectomy with axillary lymph node dissection on the right side, and a simple mastectomy on the left side, both with nipple-sparing; and also for the removal of my port, which I am very much looking forward to. I also met with a nurse who walked me through everything I need to know about the surgery, before, during, and after. Later this week I go see the plastic surgeon so he can draw on me with a marker. He will be putting in the temporary expander implants at the time of the mastectomy, and later will be doing the complete reconstruction after radiation is over. It is very hard to believe that the surgery is just a week away. It seems surreal...this can't really be happening to me.

A bit about how I've been feeling since chemo ended...Physically, I feel pretty darn good. My energy levels are back up to nearly normal. The neuropathy never got beyond what I would consider mild, and is already getting better; I have been taking B-complex and L-carnitine for it, and maybe they helped keep it to a minimum. I have some lingering joint pain and stiffness in my hips...not sure if that is actually chemo-related, or due to carrying a heavy 14-mo-old around. Even as my head is starting to sprout tiny new wisps of hair (so far it looks white), I am suddenly losing other body hair...my eyebrows and lashes are thinning out, and the hair "down south" decided to fall out all at once two weeks ago (that has been the worst in my opinion...it's just weird). I am definitely very tired of having to wear scarves and hats...am really looking forward to the return of hair.
Emotionally, it has been very hard. After initially being so happy that chemo was over, I then seemed to return to a similar emotional state as in the beginning...trying to hold it together in front of people, especially my kids, but in private having frequent break-downs. Actually, not even doing such a good job of keeping it together in front of people; I started crying during an appointment when asked to fill out a questionnaire about my emotional state, and have been on the verge of losing it any time I talk to someone about the emotional part of it all. Lots of fear and apprehension about the surgery.

Some happy things that have happened lately: We celebrated India's 6th birthday with a successful Tangled party (she's all about Rapunzel these days). We had a very nice visit from Nathan's Mom and Pop, who drove all the way from Austin, Texas to see us. We had a very lovely week at Ocean City, NJ; a huge huge grateful THANK YOU to my parents for providing us with such a fun and healing vacation. And this coming weekend we will celebrate Lily's 10th birthday with an American Girl sleep-over party...our first large sleep-over party in this small house...hopefully we will survive. It has felt really good to have so many special things to focus on this month, to keep my mind off the whole cancer thing a bit.

I will post another update as soon as I can after surgery. Please keep me in your thoughts and prayers on Tuesday, July 5th...
Love you all,
Liz"

Friday, June 3, 2011

Update on Chemo #8

Liz writes:

"Hey there,
I missed last week, but here's an update on the LAST CHEMO!


This week was my LAST CHEMO treatment!  I am thrilled to be done with it.  I hope to never see the inside of the outpatient infusion center again!  This time I was lucky to have the company of my wonderful friend Sara, who pampered me with a lovely foot and hand massage before having to leave;  then Emma came, bringing yummy pad thai for lunch--it means a lot to me that Emma was with me for both my first and last treatments.  It feels like a lifetime since I was diagnosed...instead of just five months.

I have a lot of appointments coming up, including an MRI and follow-ups with the whole team...after that I'll know for sure whether I'll need radiation treatments (but it's highly likely that I will).  My surgery date for the double mastectomy is July 5th; I'm very nervous about that, but will try to enjoy this month of June and not think too much about the surgery.  We have India's and Lily's birthdays coming up, a week at the beach, and trips to the pool to take my mind off cancer-related things.

We have very good news on the financial front:  after receiving a bill from the hospital recently for $60,000 (!), we then finally got confirmation that we were approved for hospital financial aid through the month of June.  So that bill has been knocked down from $60,000 to $0!!!!  What a weight off of our shoulders.  We still have about $12,000 in bills from various doctors who are not hospital employees plus our insurance premiums, deductible and co-payments...and we haven't even gotten to the surgery or radiation...
The average cost of breast cancer treatment that is quoted in the corner of this blog doesn't seem very accurate, in my case at least!  But we are very very grateful for all the financial help the hospital has given us so far.  And very very grateful for all the generous donations that have helped us get through this time!

I don't know how many people have been actually reading this blog :)...but it has been tremendously helpful for me to have this outlet to write about my experience; I've never been much of a writer, but it has definitely been therapeutic for me.  I will keep posting this summer about the results of my scans and appointments, and about the surgery, radiation, and (later in the fall) the reconstruction surgery.

Love you all,
Liz"

Sunday, May 22, 2011

Update Chemo #7

Liz writes:

This week started out with a visit to my surgeon, Dr. G.  She did a sonogram of the tumors, to see how they are reacting to the taxol...and there has been significant shrinkage!  The larger one went from 3.5 cm originally, to 2.5 cm after the AC, to now 1.5 cm after two taxols!  The smaller one has also shrunk, but not as much.  Please help me visualize total, or near total, shrinkage by the time chemo is done...

Wednesday was chemo #7!  I can't believe there is only one more left...it seems like I've been doing this forever, and yet hard to believe I've done it 7 times already.  I actually can't wait for the last one, so it will be over with at last.  This week my Dad came with me for the first half of the session...then he had to get back to work, so Tammi, my wonderful midwife, took over for the second half.  Bet she never thought she'd be midwifing me through a chemo treatment!  Again, it was so comforting to have people I love there with me for company.

A few new little side effects this week...my finger nails are turning yellow and bumpy, and I had a weird prickling feeling right after the treatment, as if my skin was getting poked by needles (that went away by the next day, luckily).  Aside from that, it's just the usual fatigue and bone/joint pain.  The fatigue is bad, like just standing still is exhausting...but nothing I can't handle for one more treatment (did I mention I have just one more chemo left?).

Thanks so much to Kara and Sara for the wonderful dinners this week!  And also to Sara for hanging out with me all day on Thursday, bringing me breakfast, making me lunch, organizing my new art supply cabinet, and generally being just a wonderful friend.

And a huge congratulations to Kim, who has just been declared cancer-free!  I am so happy for her, and can't wait until I hear those words as well.

Love you all,
Liz

Monday, May 16, 2011

Update

Liz writes:

"Well, I thought this would be an uneventful week, with nothing much to report...no chemo, no medical appointments.  But unfortunately, it's been a week of illnesses.  I got a fever again on Tuesday, Wednesday, and Thursday, which is always worrisome.  It eventually got pretty high, so I had to call in...but luckily Dr. D (my oncologist) didn't want to send me to the hospital again, so she prescribed some antibiotics to try to kick whatever infection it was (I had lots of symptoms to choose from, from the darned cough that came back with a vengeance, to a head cold, to a possible bladder infection).  Then the next day I had to go in and get lab work done...thankfully, I was not neutropenic, my white cells were actually really high.  The antibiotics have kicked the fever and most of the other symptoms...but I am still coughing up a storm, it is one of the worst coughs I've had (and I've had a lot of coughs).  Poor Griffin got the head cold as well, on top of his left-over cough (which is actually getting a lot better) and probable teething pain, so he's had more restless fussy nights this week.  India had a tummy bug as well this week...but luckily it was short-lived, and didn't pass on to anyone else.

But enough about sick stuff...some good stuff happened this week too.  Emma came home for the summer, after finishing up a successful junior year at VCU.  It's been nice having her around this week...but tomorrow she is jetting off on a trip to Senegal, with her boyfriend Victor, to visit his family there.  It's very exciting for her...but I am a bit nervous about her traveling so far.  When she gets back she'll be working hard at a creative arts summer camp and as a part-time nanny.

I also started out the week with a very nice visit with Kim, my friend from breast cancer support group, and her son Ben.  I can't tell you how helpful it is to talk with someone who is going through the same things.  She had her mastectomy this Friday...it went well, and she is in pain but recovering well so far.  She has been in my thoughts almost constantly these past few days...I think I might have been almost as nervous as she was Friday morning.

A huge thanks to Sara for watching Griffin while I went to the doctor.  Catch you next time after chemo 7!
Love you all,
Liz"

Monday, May 9, 2011

Chemo #6

Liz writes:

"This week was chemo #6...just two more to go!  This second dose of taxol went much like the first one...except this time, since I had such a strong reaction to the IV benadryl last time, they gave me an oral dose that was much less strong.  The side-effects have been basically the same...day two, lots of energy from the steroid; day three through five, joint and bone pain and fatigue.  This time I've also had some digestive upsets, which I was told wouldn't happen, but I apparently am prone to that.  And, the hot flashes have started...luckily, I have a built-in way to cool off a bit, I just whip off my hat...of course, that only works at home, as I haven't been brave enough to go bald in public.  All in all, I much prefer taxol to the AC, and am actually looking forward to the next two treatments (rather than dreading them) so I can get this chemo thing over with.

This week I had an appointment with Dr. Steven Davison, a plastic surgeon, to discuss reconstruction options.  I have to say, it was refreshing to meet a doctor who dresses in pin-striped suits, rather than medical garb (my friend said he wore a pin-striped suit when she met with him too)!  He has a nice manner, comes highly recommended, and is very experienced.  He said I am a good candidate for the DIEP flap procedure, which is what I wanted (this procedure takes tissue from your tummy to form new breasts, instead of using implants...so you get a tummy tuck in the process).  He will also fix the abdominal separation I've had since my third birth, which I am quite looking forward to.  I am still very nervous about the surgeries and the recovery periods, but am now trying to keep the image of myself with a flat tummy and nice breasts in mind...it will be a long, difficult time, but the end result will hopefully be satisfying.

I had some of my hardest moments one night this week...Griffin had a fever, and was crying inconsolably for some time...I just wanted to nurse him so badly.  I think it will most likely be another two or three years (when he would have probably self-weaned) before I stop having periodic weaning-related meltdowns.  I am continuously thankful for the donor breast milk we have received (we got several generous donations recently, thanks Jenna and Laura!), and am glad Griffin is generally doing so well with everything...but it's still so difficult.

I hope everyone had a wonderful Mother's Day.
Love you all,
Liz"

Sunday, May 1, 2011

May 1 update

Liz writes:

"This week has been a pretty good 'off' week, compared to the last one.  I started out the week feeling very fatigued...and learned at my oncologist appointment that I'm anemic and will be that way until chemo is done.  And for two nights I had a low-grade fever, which worried me, but nothing came of it.  But then by Friday, I was feeling a lot more energetic than I have for a while.  That day I had a great visit/baby-playdate with Kim, a mom from my support group who also had to wean her baby boy when she was diagnosed; then I went home and actually vacuumed and tidied up the house (haven't felt the energy to do that for a LONG time), went on a walk with the kids, and planted a few plants in the garden.  Up til now, just doing ONE of those things would have exhausted me. 
My spirits were also lifted this week by a wonderful Mom's Night Out, involving pina coladas and great conversation.  And to top it off, I woke up on Saturday and realized that my cough, which I've had for over 5 weeks, finally seems to be just about gone...what a relief.  Now if only India's and Griffin's coughs would get better too...

I have to say a GIANT thank you to Michele Peterson (doula extraordinaire), and the women who attended the International Childbirth Education Association workshop with her.  Michele apparently organized a collection for us at the workshop, and we received an amazingly generous check in the mail.  Thank you Michele and all of you generous ladies, who don't even know me!  We are so very grateful.  The money will really help with upcoming insurance premiums and co-pays.

Nathan, Lily, and India are off participating in a Barefoot Run around the Washington Monument today...I'm proud of them (and hope they don't get rained on).  And that's all for now...
Love you all,
Liz"

Monday, April 25, 2011

Chemo #5

Liz writes:

"This week (on Wednesday...they've switched me to Wednesdays instead of Tuesdays) I had my fifth chemo treatment, which is also the first treatment with taxol.  The weirdest part of the treatment was the big dose of Benadryl they give as one of the pre-meds...it made me so woozy, I was completely out of it for most of the time I was there.  I felt better once I got home, and the day after that I felt better than I have for a long time...unfortunately, it was just the steroid (another pre-med that protects the bones) that was giving me the energy to do some stuff around the house and take the kids to the park.  On day three, four and five I have had a lot of achiness in my joints and shooting pains in my bones.  And, as usual, no energy at all.  But I'll take that any day over the side effects of the previous four treatments...there's no white blood cell crashing with the taxol, and so far no nausea or digestive issues.

We had a nice Easter weekend, with a visit from Emma and my brother Paul, and a fun but low-key egg hunt for the girls at Gramma and Grampa's house.  Griffin is busy cutting a bunch of teeth, and acting as cute as can be.

A huge thank you to our meal fairies this week...Kara, Charity (twice!), Holly, and Lisa A.  My appetite has picked up again, now that the AC side effects are over, and all the meals tasted delicious, and were healthy and much appreciated.  A huge thank you also to Tammi, who has worked hard to arrange several breast milk deliveries for Griffin...and thanks to all the milk donors and transporters too!  An enormous thank you to Jessica H for the awesome veggie deliveries!  And I don't know how to thank all of you who have donated money to us...we are overwhelmed by your generosity.

Love you all,
Liz"

Sunday, April 24, 2011

Milk needed for Griffin

Liz has gotten lots of very generous donations of breastmilk for Griffin, but she's gotten low and is in need of a new batch. Please let her know if you are able to help her out at all or know someone who is.

Thanks!

Friday, April 15, 2011

Headed back home

Just a quick note to say that Liz left me a phone message a while ago that she was being discharged from the hospital. She expected to be home by 12:30 or 1:00 today. She will need to rest after those unquiet nights of constant hospital interruptions, but she sure is glad to be going home.

Update from Liz later:

"I got to go home today!  My white cell counts zoomed up to 2.9, so I'm no longer neutropenic.  I am so relieved to be going home, where I can actually get some rest, and be with my family! I got home at around 1pm, and am looking forward to a good night's sleep tonight.  I didn't get a wink at the hospital last night.  Thanks to everyone for your calls and emails while I was there, they really helped keep my spirits up.  And a huge thank you to Dee Dee for the delicious dinner tonight!"

Thursday, April 14, 2011

Update on chemo #4

Here is Liz's latest update:

"I'm late with this update, because chemo #4 hit me pretty hard.  I felt very, very wiped out over the weekend, and spent a lot of time resting in bed (although I was able to attend a great musical assembly at the girls' school).  Then on Monday, after a very nice in-home mani/pedi party hosted by my good friend Sara, I came down with a fever, which continued into Tuesday.  My oncologist had me go into the ER Tuesday night, when the fever got pretty high, to have my blood levels checked...and it turned out my white cells were dangerously low (basically zero), so they admitted me to the hospital. 

And I'm still here, on Thursday evening.  I have been getting lots of IV antibiotics, and non-stop IV fluids, plus shots to boost the white cells.  So far my counts have gone up from 0.2 to 0.8, which is at least in the right direction...they have to get to at least 1.5, I think.  They will check my levels again in the morning, but there is just a 50/50 chance they will be high enough to go home on Friday, according to the doctor.  I'm keeping my fingers crossed.  It has been very hard to be away from the baby and kids and Nathan...harder for me than them, probably, but also hard on them.  They have been able to come visit me a few times, which totally cheered me up.  I do feel it was definitely necessary to come here, as I was feeling extremely ill at home and wouldn't have been able to kick the infection without help...but I can't wait to go home.

The good news is that was my last chemo treatment with adriamiacin and cytoxan.  Next I start the four treatments with taxol, and that does not cause the white cells to drop.  It also won't cause all the digestive upsets I've been having, thankfully.  It will cause me to feel achy like I have the flu for a few days each time, and will probably cause some neuropathy.  We'll hope I can stay on schedule...if my counts don't go up enough by the weekend, they might delay my next chemo by a week.

A big thank you for the delicious meals we received last week!  Thanks Kimberley, Sara, and Alexa and Greg!  And thanks to Sara for hosting my "half-way-done" mani-pedi party (it was also a party for our friend who just had a baby today. Congratulations Nicole!).  And thanks to Adele for picking up the girls after school for a play date...you are awesome.  And thanks to my mom for coming with me to the ER, and Mom and Dad for helping with the baby and kids...and huge, huge thanks to my wonderful husband for holding everything together at home while I'm gone.  Oh, and many, many thanks to all the mamas who donated milk for Griffin this week, and to Tammi for bringing a big supply over to us!  We were down to the last few bags, I put out one email, and then poof, we had milk...amazing.  We are so grateful.  I hope everyone saw the article in the Post this week about milk-sharing...it was a little limited (no mention of reasons for needing milk donations, other than low-supply), but good to see it getting publicity.

Thanks to everyone for your love and support.  I'll let you know when I get out of here.

Love you all,
Liz"

Tuesday, April 5, 2011

Preparing for Chemo #4 ... and Griffin's First Birthday!

Liz writes:

"I'm a little late with this update...we had a busy weekend! Griffin turned one on Saturday, and we had a little party. Despite the rain and hail (!?!?!), and the fact that he was sick, it was a fun celebration. Then on Sunday we traveled to Richmond and had a very nice visit with Emma. I'm kind of relieved the Rams didn't win, because it would have been pandemonium while we were down there.

This past week was a bit hard, as I came down with a bug on Monday (my lowest white cell day) which included a fever. You are supposed to call if your fever gets higher than 100.5, which mine did. I was told to go to bed and come in Tuesday morning. But I already had an appointment scheduled for Wednesday morning, so I decided to wait...I'm glad I did, because apparently they would have admitted me to the hospital for observation if I had gone in. By Wednesday the fever was gone, but the annoying cough is lingering, I now am on antibiotics, and I've been extra tired, at times a bit woozy, and feeling like I didn't get back to my normal self during this week as I did the other off-weeks.

I had two appointments Wednesday, one with the surgeon and one with the oncologist. My surgeon (Dr. G) did an exam and sonogram of the tumors, and the measurements show a significant shrinkage, even though I'm not even half-way done...from 3.5 cm across the largest diameter to 2.5 cm across; plus it feels a lot softer and more movable. So the chemo is working well...good news! The oncologist (Dr. D) agreed that there is good progress. Both of them answered a lot of my questions...I've been doing more reading about everything these days, now that the initial shock is past and the weaning is done, so I had a lot of questions for them. One thing I read is that by the time most women are diagnosed, the cancer has been there already for 5 to 8 years! Dr. G doesn't think so in my case (it is a fast-growing type), and there is no way of knowing for sure, but she thinks maybe it's been there for around 2 years. I also asked a lot about the surgery, as I am really thinking about it lately and weighing my options as far as do I want to do a single or double mastectomy. The surgery will most likely be the last week of June. I'll also be talking to a plastic surgeon soon to learn about reconstruction options.

Tomorrow is my last AC chemo (adriamyacin and cytoxan)...then I switch to taxol. My mother is coming with me tomorrow to keep me company. I'm planning to bring a large supply of ginger ale with me...last time, just being in that place made me feel queasy, mostly from the smells...drinking ginger ale helped, but the hospital only has mini cans, so this time I'm bringing my own. I think I forgot to post that last time Nathan came with me...we passed the time playing scrabble on the ipod and watching Northern Exposure on the laptop. So nice to have such great company, and those high-tech gadgets, to help get through the treatments.

There is progress on the health insurance front. I qualified for the pre-existing condition insurance ("Obama care"). We sent in the first payment this week (using some of the very generous donations you all have sent!). The insurance started April 1st...but there is a $2000 deductible. We already owe WAY more than that in medical bills...but not sure yet if it will count as the deductible. We are still waiting to see if we qualified for financial aid through the hospital.

Love you all,
Liz"

Saturday, March 26, 2011

Update on Chemo #3

Liz writes:

"This week was my third chemo.  It went better than the last one...the new medicine (Ativan) kept the nausea at bay. I've been tired and a bit queasy as usual, but nothing major.  One more treatment to go with these two chemo drugs, then I switch to a third one for the final four treatments; the side effects will probably be different with that drug.

We have been treated to some really scrumptious meals this week!  Thank you so much to Monica, Missy, Kara, Sara, and Marilee (and hope I'm not forgetting anyone??).  We are so grateful!

Today I attended my monthly support group for moms with breast cancer.  It is so helpful to get together and talk with them, and hear others' experiences.  I'm so thankful for the group, run by Kerstin Perinni at VA Hospital Center. Thanks to mom for watching the kids so I could go!

And a huge thank you to my husband and kids, who have been so helpful to me, and have been an endless source of comfort, distraction, and joy.

Love you all,
Liz"

Wednesday, March 23, 2011

Preparing for Chemo #3

Liz writes:

This week was pretty quiet. I saw the nurse practitioner at my visit on Monday...I alternate seeing her with the oncologist. They checked my blood levels (low white cells as expected), and did an exam of the lump (feels softer). She prescribed a new medication for nausea...so hopefully this time I won't get so sick. I've been feeling pretty good this week...some fatigue, but that is being caused by a wakeful baby more than the chemo! I'm heading into chemo #3 this coming Tuesday.

This week we celebrated Emma's 21st birthday! We also attended the DC St. Patrick's Day parade (Lily danced in it with her Irish dance school), visited with friends, spent lots of time outside, and had a normal week of school and activities. Emma is now back at VCU...miss her already.

A huge thanks to Scott and Mary for the use of their laptop! It came in the nick of time...my computer got a virus and bit the dust. The laptop is so much easier, and will be especially nice after surgery when I most likely won't feel like going down to the basement office.

And another huge thanks to everyone who has been pumping milk for Griffin--Denise, Theresa, Lorelei and other wonderful mamas. We have a great supply in our freezer which will last for a while...so we're good for now...but if anyone already has some pumped and ready, we would definitely love to pick it up. I lost some emails when my computer died...so if anyone has been waiting for me to get back to them about milk, please email me at lizhbmom4@comcast.net.

I really appreciate all the phone calls and emails from people, checking to see how I am...it helps a lot to know you are keeping me in your thoughts.
Love you all,
Liz

Monday, March 14, 2011

Update on Second Chemo

Liz writes:

"This week I saw the oncologist on Monday, where my blood work looked good, the pancreas thing was 'tabled' for now because it doesn't seem like much of an issue at this point, and she said the lumps are already feeling like they are changing....all good news.

Tuesday was chemo #2. My brother Paul was with me, and we passed the time by watching Northern Exposure reruns. This one hit me harder than the first time, and I got pretty sick that night with nausea and vomiting. But the rest of the week has been better, with just very mild side effects and not too much fatigue yet. My hair started falling out in handfuls...so this morning my mother shaved it off...better to get rid of it all at once, as it is messy to keep losing it all over the place. I'm now trying out some of my new hats and getting used to the chilly feeling on my scalp.

Our family is doing well, despite the youngest three having colds. Emma is home for spring break (including her 21st b-day coming up on St. Patty's day!), and it is really nice to have her company and help. The kids took my head-shaving in stride, and have been enjoying wearing my wig and hats.

Thank you to everyone who came to help me this week! Paul, Mom, Sara, Michelle, and Lisa D...your company and help made chemo week pass much more easily. And a huge thank you for all the yummy and nutritious meals--Kathy and Topher, Arlene, Maya, Sara, Rashne, Janet, and Lisa L, you have kept us well-fed this week! I also want to thank everyone for all the positive thoughts and prayers...and a big thank you to my fund-raising-idea-goddess, Tammi! I am overwhelmed continually with the generosity and caring we have been showered with.
Love you all,
Liz"

Saturday, March 5, 2011

Update: approaching second chemo

Liz writes:

"This week was my 'off' week, and generally I have been feeling pretty normal.  My white blood cell count is supposed to dip down during the off weeks, but so far no sign of any problems.  I had the MRI to check on the pancreas thing, and the report came back a benign cyst.  I am still supposed to follow up with a specialist...so will be doing that soon.  I will see the oncologist on Monday, and then chemo #2 on Tuesday.
My mother and I visited the American Cancer Society in Vienna, and I received a free wig...I chose a long dark brown glamorous one, it's a Jessica Simpson brand...very fancy.  Lily wore it to school on crazy hair day!  I'm not sure I'll actually wear it, but maybe it will come in handy for special occasions.  I also got a beautiful home-made bag and pillow to take to chemo, as well as lots of informational booklets.

I've been feeling lots of ups and downs emotionally this week...probably due to how the sudden weaning has effected my hormones.  Not being able to nurse Griffin is still so hard for me.  He is doing remarkably well with the change, but there are times when nothing comforts him...and I know nursing would have.

I would like to give a huge thank-you for the wonderful meals we received this week.  Thank you Arlene, Kimberley, Alexa, Lisa A. and Lisa L.!  Everything was delicious, healthy, and made our life so much easier.  We are very grateful.

Love you all,
Liz"

Sunday, February 27, 2011

Update on first chemo and weaning

Liz writes:

"I had my first chemo treatment on Tuesday this week.  Emma came with me, and it was so nice to have her for company and support.  We watched Flight of the Conchords videos on my cool new ipod (thanks Sara!), and that made the time pass with a lot less stress.  The treatment was strange, but went smoothly.  After accessing my port, which didn't really hurt at all, I was given two pre-meds (one for nausea, one for bones), and then the two chemo drugs.  The whole thing took three hours.  I got a bit queasy that afternoon, which continued on and off for a few days (the nausea meds really kept it in check), but am generally feeling surprisingly good.  The day after chemo I had to go back in for a shot of Neulasta (to stimulate white blood cell production), and was told I might feel bone pain after, but I didn't.  I seem to be experiencing a few little side effects now that some days have passed...fatigue, shakiness, dry mouth, blurry vision...but nothing major.  I've been told the fatigue will likely worsen with each treatment, but I'm just thankful that I'm not experiencing anything really debilitating at this point.

A huge thank you to all our meal fairies this week...we've been treated to some wonderful dinners!  And also to my home help fairies, who kept me company, made it possible for me to rest and relax, and even get out in the sun for a walk, while Griffin was taken care of and my house was straightened up!


Good news on the weaning front.  After a weekend of trying the Supplemental Nursing System idea, but not really actually doing any weaning, I nursed Griffin one last time on Tuesday morning and then went off to chemo...he had still not been willing to take a bottle, and the SNS only worked if I did not cover up completely with the tagaderm.  All that night Nathan worked with him, and developed some kind of mysterious technique, and by morning Griffin finally was willing to take a bottle from him.  It was so hard for me to hear him crying and not be able to do anything to comfort him...the hardest night of my life.  But the next night was better...and by Thursday morning he was even willing to take the bottle from me!  It is a far cry from nursing, and I will always mourn the loss of our nursing relationship...but it is very dear to me now to sit and rock him and hold the bottle for him...at least I am still able to feed and comfort him in this new way.  He's been getting donated breast milk (thank you milk fairies!) and raw goat milk (thank you mama goats!)...we are working on getting more donations so hopefully the majority will be breast milk.

Love you all,
Liz"

p.s. from Jessica H.:
Liz mentioned that it would be easier for her to do online research if she had a laptop. Perhaps someone has one they are not using or could look for one on Freecycle or Craigslist?

Saturday, February 19, 2011

Update: The week before chemo

Here is another update from Liz on a very full week. She has updated her Lotsa Helping Hands website with requests for food and for visits for this coming week.

"This week I had the CT scan and bone scan.  Luckily, both showed that, while the cancer is in the lymph nodes, it has not spread to any other parts of the body.  We are very relieved.  However, nothing is proving simple...the CT scan showed some kind of spot on my pancreas, not related to the cancer, that looks like a cyst but they can't tell for sure.  So now I'm scheduled for another MRI and a consultation with a specialist.

I also got the port put in this week...a minor surgical procedure.  The port will be used to administer the chemo treatments, and any IV's I might need, thus avoiding repeated needle sticks in my arm.  It's weird having this thing under the skin of my chest...but it will really make it easier on my veins.

I had an echo cardiogram while lying on my own couch in the comfort of my home, thanks to Mobile Medical Imaging.  It was so much less expensive than doing it at the hospital, as well.  I haven't received results from that yet.

Weaning is still in progress.  I am trying to make the Supplemental Nursing System (SNS, or as I call it, the boob tubes) work...he can still nurse for comfort while getting donor milk through the tubes.  However, I am still working out how to block my milk from getting to him until it completely dries up.  Today I started taking sage and Sudafed, which work to dry up the milk supply...a sad step that made the whole thing finally seem real.  I had a visit from Pat from the Breastfeeding Center of DC, who had some helpful tips on weaning, ideas to try with the SNS, and a lot of sympathy for what Griffin and I are going through.

My oldest daughter, Emma, came home from college for the weekend, and will be with me for my first chemo on Tuesday.  She will be a big comfort to me.  Thanks to everyone for all the words of encouragement and support...and for the very generous donations."

Special thanks to:
Sara--ipod goddess, weaning coach, and mani/pedi fairy
Lisa L--Pat-scheduling-goddess
Jessica H--website goddess and veggie delivery fairy
My Mom--grandma extraordinaire
All my pumping goddesses--Grainne, Katie, Abbie, Theresa, Anya, Amy, and others...
All the ladies who came to help with Griffin this week--Sara, Maya, Arlene

Sunday, February 13, 2011

An Update from Liz

This Thursday was my appointment with the oncologist.  She let me know that the cancer is in the lymph nodes, and that therefore I need some more tests to make sure it hasn't spread around to other places.  Next week I'm scheduled for a cat scan and a bone scan, and some blood work.  She also heard a faint heart murmur, so I'm getting an echo cardiogram as well (chemo can damage the heart).  Also I will be having a port put in...that's a little plastic thing which is placed under the skin on the chest, and inserted into a major vessel. Each chemo treatment will be administered through the port instead of through an IV in the arm, which will be a lot easier on my veins.  Next week is also my chemo class...I will learn all I ever wanted to know about chemo and more.  My first chemo will be Tuesday, February 22nd; there will be 8 treatments, given every other week.  Then I'll have a month off, then surgery (a mastectomy), another month off, then daily radiation for 6-8 weeks.  And I'll be on tamoxifen for 5 to 10 years.

I also saw Dr. Hai Jin Kim, of Health Builders in Annandale, this week.  She generously donated the visit to me, during which she tested me for different foods and substances that cause me weakness or inflammation, and recommended some supplements and dietary changes that will strengthen me during this process. Thank you Dr. Kim!

I want to give a huge thank you to everyone who has so generously donated money to us.  We are overwhelmed with gratitude.  So far, we have spent a little on some breast cancer books, including a few to read to the kids; a little on a Supplemental Nursing System that I hope will enable Griffin to still be able to "nurse" at my breast while getting donor milk or formula; and a little on the supplements recommended by Dr. Kim.  We are going to have to pay out of pocket for the echo cardiogram (they are separate from the hospital and so are not going to be able to put the bill on hold with the rest), so more of your generous donations will go towards that.

I haven't managed to wean Griffin yet, but now I have a specific deadline, so I'll have to get serious about it this week.  So far he has not been willing to take any type of milk from any type of bottle or cup that we've tried.  It's going to be a difficult week for both of us.

Our lovely cat is still available for adoption!

Saturday, February 5, 2011

Adopt Liz's cat!

Liz asks:
"Can someone help us out by adopting our cat?  We have a beautiful, sweet, loving, healthy, long-haired,13-year-old cat named Muzzy, who loves getting lots of attention and lap-time.  Unfortunately, she was already getting a bit neglected since baby Griffin was born, and now that I've got this cancer thing in my life I am finding it even harder to take care of her.  A family without a lot of other pets or babies, who could give her lots of cuddle time, would be cat heaven for her.  She comes with a Cat Genie (automatic litter box)."

Thanks for your consideration and help in finding Muzzy a new, loving home.

Update on a quieter week

Here is Liz's report from this week:

"No doctor appointments this week...and my doctor did not hear back from the pathologist yet about whether it's in the lymph nodes or not...so still in the dark as to what stage this is.
I will have my oncologist appointment next Thursday. We applied for financial aid at the hospital this week...hopefully we will get accepted, but meanwhile they are putting all our bills on hold.  We are very grateful for that, and for the Center for Breast Health at Virginia Hospital Center, which has been discounting their services for us."

Special thanks from Liz

Liz says:
"A big thanks to everyone for their support and resources.  An extra-special thanks to:
Sara, financial goddess
Marilee, healing crystal goddess
Jessica C, juicer goddess
Tammi, healing mantra goddess
Adele, playdate/sleep-over goddess
Jessica H., website goddess
Lisa L, cheesy-potato goddess
Nicole, super Ninja blender goddess
Nickie, Trader Joe and Whole Food delivery goddess
Lisa A, Chinese porridge goddess"

Friday, January 28, 2011

Preliminary MRI and mammogram findings

With all the snow, delays, and closures we've had this week, how long ago it seems since Liz first saw her doctor just at the beginning of this week.

One piece of news she got on Monday that I didn't understand enough to post about was about her receptor diagnosis. She explained in an email, "The cancer is 'feeding' off of estrogen and progesterone, but not off of HER 2 (so that is ER+, PR+, HER 2-).  This is apparently the best-case scenario, because it is easier to treat with hormone therapy, which will block those hormones from getting to the cancer.  Unfortunately," she continued, "I suspect that it will mean there is no way I will be able to nurse Griffin after the chemo, because the hormone therapy is often prescribed for years, and is absolutely contraindicated for breastfeeding.  But I of course don't know yet for sure what my treatment will include."

Two days later, on Wednesday, Liz had an MRI and a mammogram. Midday today she reported: "The mammogram and sonogram showed another small lump next to the big one, and a large area of abnormal calcifications.  We of course were hoping it was just the one lump, so that news was terribly disappointing.  We don't yet know if there is any additional info that the MRI can give."

A few hours ago she shared more news after talking with the doctor. The doctor "confirmed that there are two lumps, one big and one smaller, and a large area of calcifications that look malignant (they would have to be biopsied to be sure).  The lumps look like they are in the lymph nodes, even though the biopsy didn't report that...she is going to go back to the pathologist and try to figure that out...if it is the lymph nodes, then the cancer is more aggressive than we thought (it would be stage III).  I have an appointment with the oncologist on Feb 10th, but we're trying to get that moved up to next week."

Today, Liz attended a support group for breast cancer patients with young children. She met one woman who was diagnosed with inflammatory breast cancer and had to wean her baby the very next day and start chemo the day after that. Although the results Liz got today are troubling, she wrote, "I am so thankful that [immediate weaning with no warning] is not the case here, and will be treasuring the last days of nursing Griffin."

Fighting back tears from reading those poignant words, I called Liz seconds later to make sure I could share all this information. She answered the phone with a chipper hello, and though I know she is scared, she is managing to try to keep a positive game face on around the children. I am humbled by her strength.

Jessica H.

Tuesday, January 25, 2011

Thanks, and milk update

Liz asked that I post a big thank you from her to everyone for their support and help with resources and funds.  She said it looks like Griffin won't need supplemental milk until March when her treatment will likely begin...but that she is planning to start drinking some as an alternative treatment, so if people have some now to contribute, she would be happy to accept. Email her directly about this. We will post again when Griffin is about to be ready for supplemental milk; people might want to wait until then to start pumping.

Quick updates

Thank you to everyone who has made a financial donation! We think we now have the PayPal account linked up; if you got a message saying your donation was not delivered, just wait a day or two, and we hope it will all go through. We'll post an updated amount once we are sure things are set.

Thank you also to everyone who has offered a service or a support. The outpouring has been amazing! I am doing my best to keep up with all the emails I have gotten, but there are a lot! It's a great problem to have! Thank you for your patience as I compile all the info sent via email and in the comments section here and get it to Liz in a manageable format.

Liz planned to send me some text to post for her, but she's had plenty to do/read/think. So I'll share briefly that I had a short visit with her yesterday after she'd had her initial appointment with the woman who is her doctor (and is a surgeon), one of a three-person team that will include a radiologist and an oncologist. There are also financial counselors available at VHC.

Liz's MRI and mammogram are scheduled for tomorrow, January 26. She has an appointment with a radiologist on February 10. She'd like to wait until then to discuss her diagnosis with the girls.

Right now, Liz is not feeling in need of lots of help with meals. If you get inspired, remember that she is a vegetarian and that healthy and anti-oxidant rich are keys.

Liz has gotten a ton of great information about things TO do, but she is requesting some help finding out what foods, herbs, supplements, oils, etc. are contraindicated for a patient with breast cancer.

Also, is there somewhere she can test her milk down the line if she does a round of a medication and wants to resume nursing but first test to see that the meds are out of her body?

If you have time to look into the above and get any answers, post them here, or email them to Liz directly or to LetsHelpLiz (at) gmail (dot) com

Thanks!

-Jessica H.

Saturday, January 22, 2011

Welcome

"Welcome" seems inappropriately cheery, but thank you for visiting. This site has been started for people who wish support Liz in her healing journey.