Linda's Celebration of Life

Linda's Celebration of Life was held on a beautiful Sunday afternoon at the Nine Muses in the Grounds for Sculpture in Hamilton, New Jersey.  It was wonderful to see over 300 friends, colleagues, and family members from all parts of Linda's life in attendance.  Clearly, Linda touched many people during her lifetime and will be dearly missed.

For those who could not make it, or those who wish to remember a very special day, I've put a transcript of the ceremony and several pictures (thanks to nephew Josh) online: http://sites.google.com/site/lcvfund/col

A few special highlights from the day (makes you think that Linda was certainly there in spirit):

• An early threat of rain cleared in time for the ceremony, with gorgeous weather including sun and blue skies to complement the outdoor setting.
• The ceremony site was overflowing with dragonflies. One landed on Linda's father's leg and sat there for a minute after he sat down from giving his eulogy.  Many smiles and tears followed.  A few other special dragonfly stories were shared (the dragonfly picture with the transcript was actually taken at the ceremony site, the Nine Muses sculpture).
• An incredibly large and bright rainbow made an appearance as the reception was winding down.

Thanks to everyone for making the day so memorable.

Linda's celebration: some logistics

Thanks to everyone for their kind words over the last couple of weeks.  They've been very helpful.

I'm looking forward to seeing many of you at Linda's Celebration of Life this Sunday.  Thanks for letting me know that you're coming via LCV.CoL@gmail.com , and please do let me know if you haven't already.  I'll need to make some decisions based on numbers by Tuesday afternoon, so you can still send a quick note (don't feel that you have to include a personal message).

I wanted to address a few questions that have come up:

• I forgot to include a link to the ground for sculpture website.  Here's a link for directions: http://www.groundsforsculpture.org/direct.htm

• I don't think parking will be a problem, but if you're thinking about carpooling with someone, it might be helpful.

• Thanks to those who have offered to shuttle people from the train station.  Doesn't seem like many will be coming in that way, but I will let you know if we need you.

• Finally, regarding dress for a "Celebration of Life".  I'm imagining a business-casual attire; probably not many jackets or ties (will probably be mid-80s outside), khakis, casual church-going attire.  No need for somber/dark colors.  But hopefully something that you're comfortable in.

Safe travels to all!

LCV Obituary

     Linda Casill Vogel, 35, of Voorhees, NJ passed away at home surrounded by loved ones on July 10, 2012. Despite a long fight with breast cancer, Linda will be remembered as not having been beaten by the disease. The illness could not alter her vibrant spirit, as she continued to live life passionately, laugh through it all, and love and be loved by many. 

     Raised in Gates, NY, Linda graduated from Gates-Chili High School in 1994 where she was active in many athletic and “mathletic” activities.  She was also involved in Young Life Youth Group and Summer’s Best Two Weeks camp as a camper and later a counselor.

     She received her Bachelor of Science degree from Rensselaer Polytechnic Institute in 1998, where she was a member of the track and field team, an Alpha Gamma Delta sister, and first started playing ultimate frisbee.

     Linda was very involved in the ultimate frisbee community, playing on many competitive teams and qualifying for several National Championship tournaments.  Linda shared her love of the sport with friends and newcomers alike through spirited play and leadership roles in New Jersey and Philadelphia ultimate leagues.

     Linda worked for thirteen years as a consultant at ZS Associates, first in Princeton and then in Philadelphia.  She progressed through the company very successfully, being elected as Principal in 2010.  Linda loved what she did and the people she worked with, and this was evident through her dedication to clients and co-workers.  Her enthusiasm and work ethic have made a lasting impact on her ZS family.

     Since first being diagnosed with breast cancer in 2005, Linda annually raised money, Raced for The Cure, advocated, and volunteered for cancer-related charities, most notably Susan G. Komen for the Cure.

     Linda is survived by her husband Michael Vogel, parents James and Patricia Casill, brother John Casill, Grandparents Arthur and Norma LaRosee, Goddaughter Regan, and many other relatives and friends. All are welcome to join in a Celebration of Linda's Life to be held at 4 PM Sunday, July 29 at the Grounds for Sculpture in Hamilton, NJ. 

     Donations in her memory can be made to The Linda Casill Vogel Memorial Fund.

Appeared in the Rochester Democrat and Chronicle on Sunday, July 22, 2012.
View the guestbook here.

LCV Celebration of Life

Plans for Linda’s Celebration of Life have been finalized. Please note that this is a *change* from the previous tentative plans.

The Celebration of Life will be held on Sunday, July 29, 2012, at the Grounds for Sculpture in Hamilton, NJ.  The ceremony will begin at 4:00 pm at the Nine Muses sculpture (outdoor), followed by an informal reception with refreshments inside the East Gallery for further remembrance and reflection.  Everyone is welcome to attend.

The Grounds for Sculpture opens at 10am on Sunday, so feel free to arrive early to explore and enjoy the grounds (admission is complimentary; mention Linda’s Celebration of Life at the gate).  I recommend allowing at least a few extra minutes to walk from your car to the ceremony site (an electric cart will also be available for those needing assistance).  The venue is close to the Hamilton transit station, so we may organize a shuttle if it would be helpful.

On Saturday, July 28, our home in Voorhees will be open to visitors after 1pm.  This is primarily intended to give those family and friends who are traveling from further away additional time to visit, but all are welcome to the informal gathering.

You can help me in preparing for Linda’s Celebration of Life!

• I’d like to display lots of photos of Linda over the years on photo boards and in a slideshow for all to enjoy.  If you have a favorite photo or two of Linda (serious or funny; with or without you in it; etc.), please email it to:  LCV.CoL@gmail.com .  Feel free to include a caption (or not).

• I’d also like to put together a musical playlist for the reception with songs that were special to Linda.  If you have a song that particularly reminds you of Linda, please email the name of the song to LCV.CoL@gmail.com (if you have an .MP3 that you can email, that's even better).

• Finally, it would be very helpful if you can email LCV.CoL@gmail.com if you will likely come (and how many you will be).  I realize this is an odd request, but it would be very helpful in planning to have even a rough estimate toward the end of this week.  Please mention if you would arrive via the transit station. 

I hope to see you there.

PS - In response to queries about making donations in Linda's name:  I have established the Linda Casill Vogel Memorial Fund, and hope to have information to share in the next day or two.  Thanks for your patience.

The saddest news, continued

By now you've heard the tragic news of Linda's death on Tuesday July 10, 2012.  The last several days (actually, several weeks) seemed to go by in a blur.  It was just incredible how quickly things progressed.  I'd like to share just a few pieces of information about that part of Linda's story.

Hospice did come to our home to begin assisting us on Thursday July 5.  Most importantly, the hospice nurses were able to help us better manage Linda's pain, and I'm confident that she was very comfortable for her last few days.  On Linda's final day, we had a visit from a home aid and even a masseuse (both through hospice) to make Linda even more comfortable. 

As I've said, the progression was very fast.  Saturday through Monday were filled with much sleep, little appetite, and limited coherence.  There was a significant drop in Linda's strength through Monday night and into Tuesday morning.  Linda's family members (Jim and Tricia from Lancaster, and John from DC) were able to get to our home Tuesday afternoon to join Charlene and myself.  We were all able to spend time with Linda together and in smaller groups.  In the evening, we we were each able to take turns spending some final one-on-one time with Linda.  As the last of us finished their time with Linda, she took her final breath.  It was a very peaceful passing.

As Linda had wished, her body has been cremated.  There has been no ceremony for her yet, private or public.  Instead of a funeral, we are planning a Celebration of Life.  (Rather than a traditional/mournful setting, we will let a couple of weeks pass so that we can better *celebrate* the vibrant life that Linda lived.)

I will share the plans for the Celebration of Life as soon as they are finalized.  I can tell you that TENTATIVELY we will celebrate in the afternoon of Friday July 27 near Princeton, NJ.  But *please* hold off on finalizing travel plans until I let you know that everything is set, hopefully in the next couple of days.  There will be a ceremony followed by a reception where we will have time to further remember Linda and share stories.  I will also open our home in Voorhees, NJ to visitors on Saturday July 28.  While this is primarily intended to give those family and friends who are traveling from further away additional time to visit, all are welcome.  I anticipate Saturday's "open house" gathering to be a very informal and simple affair.

I will continue to post on Linda's blog over the coming weeks to continue the story (and also to fill in some holes from earlier this year).  But I'll end this post with a few points that I hope will be reassuring.  I've heard several people comment on how well Linda and I seemed to be doing (emotionally) over the last couple of weeks.  Despite the immense sadness that I feel, I have to say that I agree that we both seemed to do "pretty well."  One positive thing about Linda's disease was that we were able to prepare for this day over the last two years.  And we had absolutely no regrets.  We did everything we could from a medical point of view to fight the disease.  And we also *lived* as much as we could in that time; spending time with loved ones; traveling; and enjoying every moment.  I suspect that someday my emotions will catch up with me, but for now I feel very much at peace.  Linda also seemed to be very much at peace.  She had very candid discussions about death with a few friends, and when asked if she was afraid of dying, she asked in return why she should be afraid-- she was really only concerned about the people she was leaving behind.

Unfortunately, because of how quickly things happened at the end, Linda was not able to spend time visiting with the many, many friends and family who would have loved to have seen her.  But I *was* able to share many of the messages that you sent along for her.  So please, think of the last time that you were able to spend with Linda with fondness, as I'm sure that's the way Linda would have wanted it.

The saddest news

It breaks my hearts to share that Linda Casill Vogel passed away yesterday evening, July 10, 2012. 
She passed away very peacefully, with closest loved ones at her side.
She will be missed immeasurably. 
I will need some time to spend with family and dear friends, but will pass along more info soon.  A Celebration of Life will be held in the coming weeks, details forthcoming.
Love to you all,
Mike

July 10 update

From Mike:
The latest news is difficult to share, so forgive any bluntness or lack of emotion.

Much has happened in the last ten days.  Unfortunately, Linda's liver function has been rapidly deteriorating over the last few weeks. 

This turn has happened so suddenly and so strongly that Linda's body is no longer able to tolerate further treatment. (Most chemos are processed by the liver, and the Dr feels strongly that any further chemo would likely do much more harm than good, causing the liver to shut down prematurely and robbing Linda of her remaining precious moments). 

We have explored and carefully considered a great number of treatments, but sadly none are options at this point.  No chemotherapies, no clinical trials, no local radiation therapies, no hormonal therapies, and no other therapies remain as options due to the current state of Linda's liver.

Based on these results, Linda has decided to shift from active disease-fighting treatment to palliative care to maximize the quality of her remaining life.  We have met with Hospice nurses over the last few days, and they've been able to help in many ways (better managing pain, getting a comfortable hospital bed, oxygen, etc.). 

As Linda has wished, she will be able to spend her remaining days comfortable at home.

Though Linda is unable to fight the cancer with direct treatments, her fight is certainly not over.  The fight has simply shifted to a different type of fight: Continuing to "Live, Laugh, and Love" in the face of this disease is the new battle.  In true Linda-fashion, we went from the hospital (where we made this difficult decision to transition to Hospice), directly to the shore for a couple of days (thanks Coco and family!).  And a rough day of fatigue and pain couldn't keep Linda from enjoying fireworks with loved ones on the 4th.

************

I wrote the above a couple days ago.  And unfortunately, Linda's condition continues to deteriorate.  Over the last few days, she is sleeping almost all the time, with much confusion during her limited time awake. Through last night I noticed a significant decrease in strength, so I'm not sure whether we can expect further moments of coherence.

A clarification on pain and medication: we've been doing everything we can to be sure that Linda is feeling no pain-- that's the goal of Hospice care, to make Linda as comfortable as possible.  So please know that she does seem comfortable and at peace now.

Visitors: For now, I think it is best to absolutely minimize the number of visitors to the very, very closest family and friends.  This is a very difficult decision because there are so many of you who love and care for her so much, and obviously complicated and very difficult due to the rapid decline in her health.  Several days ago, Linda was really feeling overwhelmed by visitors-- I think visitors are exhausting and stressful for her at this point (wanting to be awake and to entertain; and also much frustration at not being able to find the right words). 

While Linda is not able to check emails/txts/facebook/voicemails, I am doing my best to collect all of those messages and read them to her.  I do feel that she can still understand all of your messages of love and support, so please feel free to keep them coming.  I'll do everything I can to make sure Linda hears them.  I think that hearing your voices (via voicemail) or even possibly seeing your faces (via a video message) would be a fantastic way to reach out to her.

Back on the Bucket List... and on the Bright Side

Thanks to so many of you for your responses to Mike's blog post.  He was able to summarize what's been going on here in a way that was accurate, efficient and loving. 

Meanwhile,  I was really struggling with the losses that I was still mourning -- worrying that by not acknowledging these amazing women, I was doing an extreme disservice to the mark they left on this world.  Worrying that by acknowledging the loss, it might inspire fear rather than hope. It's a delicate line to walk. 

And, while it is critically important to focus on the joys we find in each day, by only recounting the joys, I have not painted a fair picture of what life in 2012 has looked like for Mike and I. 

You now know more about the challenges I have faced with my disease, and, unfortunately, we received more bad news this week.  I started Aromasin (hormonal therapy) on Friday night, but prior to starting the Afinitor, Dr C wanted to re-check my liver functionining (despite having run chem labs only 10 days prior).  In addition, I started on short-acting narcotics on Saturday night, due to extreme pain throughout the night.  Whether it was the mix of new drugs or the tumor acting up, I found myself extremely nauseas and vomiting on Sunday afternoon (made Mike pull over in the parking lot of a nearby restaurant that we've always wanted to try... and made myself at home in the bathroom at a friend's house during a BBQ... sorry Jarrud & Emily!)

Got to talk to Dr C on Monday  and  he is extremely concerned with the results of the liver tests.  He does not want to start on the Afinitor (it is processed through the liver and can be fairly tough on the organ).  In addition, he shared that he does not think that this is a good time for us to travel so far to Alaska -- he is concerned about the 19 hour trip there (lack of activity, hydration, etc) and he is worried that I run a fairly high risk of liver complications in the next 2 weeks, landing me in the ER.  Dr C has always been one to look out for balancing my quality of life with my treatment, so when he worries.... I worry. 

Deep crevice in an Alaskan glacier -- photo caption:  Irene Blakenburg, during her recent Alaskan cruise

After two days of discussions, Mike and I have agreed that we will need to postpone our trip to Alaska.  Not only are the #s significantly out of range, they have also progressed significantly in just the past 10 days.  Add it to the list of decisions that cancer has taken the decision right away from me. 

I'll meet with Dr C later this week or early next week to re-establish a game plan.  The liver function is so poor that it is unlikely that I will be able to start a new chemo for now (again, so many of these drugs are processed through the liver... given the current state, it would be too risky to try to process the poison).  I'm cranking up the narcotics to get some better pain relief -- so please pray for limited nausea and successful pain relief.

OK -- so now, looking back on the bright side:

• My dad is home early from China and we'll get to spend this weekend with the family.
• Mike has been busy setting up a first floor bedroom for me and I can't wait to decorate it and make it "mine"!
• I won't have to miss July 4th celebrations with Regan -- it's my absolute favorite holiday and I can't wait to share the excitement with you again this year!
• We are going to try to find a few mini-retreats close to home (so we can get back here easily if we encounter any issues)... thanks to Coco for the invite for next Mon/Tues at LBI -- we are really looking forward to it!
• We can't wait to see friends and family in mid July for our annual Summer Bash -- please let me know if you don't have details about the party on July 21!

Excuses

Thanks to Mike for the amazing update on my blog.  I know it's been a while since I've updated and it's due to a combination of "excuses".  The biggest excuse is that I've been at a tremendous loss for words.  At Thanksgiving and then again in early January, I lost two amazing young women to this ridiculous and deadly disease.  One that is too often overshadowed by pink ribbons and survivor marches.  One that has been commercialized to the point that many have forgotten what the point really is. 

The point is... women are still dying of breast cancer.  It's not because they didn't "fight hard enough".  It's not because they didn't "stay positive".  It's because once breast cancer spreads, there is no longer a cure.  Yes, early detection reducess your risk of metastatic disease, but, particularly for young yomen, this disease is aggressive... and even if you do all the "right things" (eat right, exercise, limit alcohol consumption...) it may not be enough...

It's time to stop making excuses and start making progress.  Not just awareness, but understanding of why breast cancer metastasizes and what we can do about it once it does.  

Understanding that would have saved the lives of wonderful women like Jill Tongol and Keeley Cultra who touched this world in many amazing ways

Jill & Natalie

   

Keeley

 
Understanding that would reduce the pain and fear and stress and anger in the lives of lovely women like Jennie Grimes and the women of YSC, SSFMB, and the Cancer Support Community of Philadelphia-YSC Mets Networking Group

Jennie and I at Smokin' Betties in Philly

SSFMB at MSBCN.org conference at Hopkings

          
Understanding that would reduce the fear and helplessness felt by all those who love and support us

Vogels & Marinos

Casills and Vogels

2011 - Komen Ain't Nothin Gonna Break my Stride

Scotts and Vogels

Spring update

From Mike: It’s been a busy few months since Linda’s last post (Valentine's Day).

There are lots of non-medical stories that I’ll let Linda eventually tell:  Trips to Southwestern USA, Poconos, upcoming cruise/tour to Alaska, several visitors, and plenty of closer-to-home stories.

Unfortunately, we’ve also had a lot of medical activity.  Linda has been sending updates via Facebook posts, but we haven’t been doing a good job of keeping others in the loop.

Below is an overview of the medical side of things since February.  Maybe someday we’ll fill in the details in other posts, but for now these are the basics.

Big picture (chemo, etc.):

• Jan-Mar: Linda was on CMF chemo regimen.
• End of March: Determined that cancer had progressed despite the CMF (started feeling fullness in gut on SW trip, and scans later confirmed).
• Early April: Switched to “new” chemo: Abraxane + Avastin (Abraxane had been used 8/10-2/11 with good results and minimal side effects; stopped in 2011 to give Linda a “chemo break”).  This time the side effects (primarily fatigue-related) were worse since Linda has been on chemo continuously for a couple years and her body is simply worn down. This required an additional 2-3 visits to the hospital per week for Neupogen injections to keep her body strong enough for the following week’s chemo.  Other bad side effect: typically 2-3 nosebleeds per day (with a few per week that I’d classify as real “gushers”)—this is from the Avastin.
• Early June: Determined that cancer has progressed despite the Abraxane/Avastin.
• Present: Our trip to Alaska (Jun 28-Jul 13) has thrown a small wrench in the planning.  Since it doesn't make sense to start a new chemo right before the trip, Linda will instead start a hormonal therapy today (Aromasin + Afinitor), which is just a couple of pills per day, with much more tolerable side effects than chemo.  Linda has gone through two previous hormonal therapies that were unsuccessful (Tamoxifen and Femara), but this is a new combo that made headlines last December for success in making hormonal therapy work in women for whom it had previously failed (the cancer has evolved to block the hormonal therapy from working; but Afinitor then blocks the way that the cancer blocks the hormonal therapy).
• Next steps: Ideally, this hormonal therapy will be effective and give Linda a needed break from chemo.  However, Dr C will be keeping a close eye on Linda's progress.  If this hormonal therapy is not as effective as we hope, then we'll have to choose between a handful of “standard” treatments still on the table vs look into clinical trials (we recently met with an oncologist at Fox Chase)—this decision will be based on tolerability of side effect profile, efficacy studies, and availability of clinical trials. 

Other pains and problems:

• Bad back pain (curled-up-in-ball-crying pain, over-counter pain meds have no effect, not eating, etc): Early April-Late April
• Heavier narcotics did help to alleviate pain, but for Linda they seem to always be accompanied by nausea and vomiting for the first couple of days until her body acclimates.
• Scans ruled out obvious causes (spinal problems, spread of cancer to bones); the pain did go away after a couple weeks, so this will go down as “unexplained cause.”  Could have been indirectly caused by cancer (enlarged liver pushing on organs/bones), and starting new chemo regimen stopped the pain; or could have been something completely different.

• Fevers: April-Present (Ongoing)
• Have led to emergency antibiotic infusion and several blood cultures (in case the cause was infection); presently thought that ongoing fevers are indicative of tumor activity.
• Fevers now occur more often (body temp can go through 2-3 cycles per day from 96 to as high as 104, though usually “only” 102).  These fevers are brutal, making Linda extremely exhausted (and dehydrated, and etc.).  And there’s plenty of basic discomfort to go along with these fevers (teeth chattering and shivering in 4 blankets one moment, to whole-body sweats with fans blowing directly on her 10 minutes later; lots of lost sleep, changed clothes/sheets, etc.).
• Getting rid of the fevers involves addressing their underlying cause.  Unfortunately, this means it’s possible that the fevers might stick around until we find a chemo that works.

• Bad cough (respiratory infection?): Late May-Present (Ongoing)
• Very bad cough + cold, with complete loss of voice for a few days.  Scans and other tests (and fact that it was productive cough) ruled out pneumonia and tumor activity in lungs as causes. (Side note: unfortunately, those scans also showed that the Abraxane/Avastin stopped working in the liver.)  Of course, the chemo makes Linda immuno-suppressed, which makes it much harder for her body to fight off colds like this.
• She was on several meds to make her feel better (antibiotics, etc.); but either the steroids or the narcotic cough syrup caused vomiting/nausea for a couple of days.
• As of today, the cough is still present, although I’m pretty sure it’s slowly getting better.  So hopefully it’s on the way out and we can cross this problem off the list soon.

• Joint pain and general soreness: Early June-Present (Ongoing)
• Most likely caused by low activity level and resting in same position for most of the time.
• At its worst, this pain has been bad (a 4/5 out of 10).
• Sleeping on the couch (softer than the bed) for so long has now made the bed a problem; laying on the harder bed causes a new set of joint pains.
• Doing our best to add a little activity at a time to the daily routine to build her strength back up (and for her sanity!)

Linda’s spirits: As you can imagine, it has been a rough few months for Linda

• Any of the above pains would be bad enough on their own, but when you consider having everything at the same time (ongoing fevers plus bad cough plus pains all over the body plus swollen gut that causes nausea and loss of appetite), you can start to appreciate how brutal this has been for Linda.  Many days she spends lying on the couch, sleeping for 15-18 hours a day.
• Despite this, Linda has generally managed to keep her positive attitude and strong will to fight.  However, I’d say the pains and inactivity have taken a toll on Linda.  She has certainly had moments of depression. “I just can’t get a break, can I?”
• The love and support and kind words from family and friends really go a long way in boosting Linda’s spirits.  You can never have too much support, right?  Whether it has been a quick email or facebook notes, or cards or flowers, or phone calls or visits, they always mean so much to Linda.  Thank you for your continued support that is much appreciated by both Linda and me.

Valentine's Day Chemo!

I've always been firmly in the anit-Valentine's day camp... with or without a Valentine to share it with.  Back in my single days, I would "celebrate" V-day with a pot of chili and my best buds (gals and guys) and, to be honest, those years trumped many of the years that I actually had someone to spend it with (with the possible exception of the year I received a homemade "Vogi-bear"!)  It just seems like such a "Hallmark Holiday" and so I find it hard to get all gushy about Feb 14. 

Nonetheless, we got into the holiday spirit and baked up a batch of pink and red Valentine's Day cupcakes to take into chemo with us today.  I figure, if you are going to spend Valentine's Day being pumped full of chemo, you might as well get to enjoy a sweet cupcake while you are there!

Seems like the chemo-mixer was also in the V-day spirit, as my chemo came out covered with heart stickers! 

It was actually one of my best chemo visits to date -- I had a great chat with Pat (a woman I've seen probably a dozen times in the "quiet room", but haven't really had an opportunity to talk with) and it made the time fly.  I didn't even have time to break in the new Kindle that Mike gave me for Valentine's Day (despite our oath to not cave in to the hype and buy each other V-day presents, Mike apparently couldn't help himself... while it's just the base model, I've been really impressed with how light and easy it is to read -- can't believe we held off for so long!)

We traipsed to Philly for my "Young Mets Networking Group" (another month of it being just me and the facilitator, but I have high hopes for getting this group off the ground once and for all)! 

All in all, a pretty perfect Valentine's Day, if you ask me!

Rainbow CMF

Back to chemo.  My counts have rebounded successfully and I passed my exam with flying colors  -- Dr C still can't feel my liver, which is a good, good sign... no cough, no pain... stable weight (well, if I am honest, I might have put on a few pounds with all the yummy food in Mexico!).

We brought back Mexican coffee for Dr C and handmade soaps for all of the nurses.  Apparently, this got me into "the club" with the lovely lady who mixes our chemo... my drugs came out today covered in smiley-face and rainbow stickers.  Somehow, it makes the poison in the bag and syringes seem much more innocuous, doesn't it?  (Though it did cause a bit of a hubub in the chemo room... another lady in the room got jealous of my stickers, pitched a fit and got some stickers too.  Funny how the little things can really make a difference though!)

side effect nightmare

So while we were in Mexico, Mike and I had a good time laughing about the ridiculous cycle of drugs that I'm on.  I'm on drugs to combat the side effects of other drugs that I'm taking... which have their own side effects in turn!

For example, the CMF makes me nauseous and causes diarrhea. 

• For the nausea, they give me Aloxi, which causes constipation
• For the diarrhea, I take Imodium, which causes constipation
• For the constipation, I take Colace and Senekot, which cause diarrhea and nausea
• What the heck!?!

Kind of crazy, right?  So we made up a flow map for all the side effects and remedies... enjoy!

hola!

The first two doses of CMF were fairly uneventful (always a good thing with a new chemo!)  I'm totally digging the new schedule too -- with chemo given on weeks 1 & 2, that gives essentially 3 weeks of "rest" in between rounds (yeah - I know... it took me a minute to do that math right, but I essentially only use 7 days of the month between dose 1 & dose 2, leaving me with the rest of the month for recuperation, work, travel, visiting with friends, etc etc!)

On the docket for January was a Casill-family vacation with Mom, Dad, John, Mike and I.  Despite the fact that we left on the only day we've had snow since October, Mike and I managed to make it out of Philly, through Denver and into sunny Puerto Vallarta (PV) as planned.  Dad had arrived the day before (from China) and was waiting for us at the airport.  John & Mom weren't as lucky -- they missed their connection in Houston and had to spend the night there. 

We stayed in a villa about 45 minutes north of PV, near the small fishing town of La Cruz de Huanacaxtle.  The drive up to La Cruz was a bit sketchy at first, but once we got our bearings, I was delighted to be away from the tourist-infested craziness of Puerto Vallarta. 

Highlights from our week in Mexico:
* the local craft market at the marina next to our Villa (fresh spinach & pine nut tamales... yum!)
* zip-lining with the whole family (watching mom have to get "rescued" on her first run)
* searching for Chico's or Chino's Hidden Paradise (didn't find them, but did find our own hidden paradise for lunch)
* mom sleeping through the scenic bus ride into the mountains to San Sebastian
* mom trying to give John away to our tour guide for San Sebastian
* whale watching and snorkeling at Marietas Islands
* hiking the "Jaguar" trail at the Botanical Gardens
* drinks at La Cliff
* guacamole, a bucket of coronas, sunset and dinner on the beach in Bucerias
* delicious food, lovely people, time with family and sunshine

kayaking at Marietas

Marietas

Whales

Whales

Outdoor Adventure

John- Outdoor Adventure

Mike & Linda racing on the zipline

Outdoor Adventure

Outdoor Adventure

Whale!

John & Mike at the "Hidden Paradise"

In the mountains

Hacienda

View from our Villa

Sunrise

Sunset drinks and dinner

On the way to Marietas

next stop on the chemo train...

Despite my best effort, Xeloda joins the likes of Abraxane, Ixempra, and Adriamycin... chemos that I have tried and had to move on from (either because they didn't work, they stopped working, or the side effects were too risky).

Next stop on the chemo train is an oldie-but-goodie:  CMF.  CMF is a "cocktail" of 3 drugs:  Cytoxan, Methotrexate and 5-FU.  CMF has been fighting breast cancer for as long as I have been alive.  In 1976, researchers found that CMF chemotherapy used post-operatively reduced the risk of recurrence.  It quickly became the standard of care.  Since then, AC+T (Adriamycin, Cytoxan & Taxol) has demonstrated superior efficacy, but CMF is still a worthy soldier in the fight against breast cancer.

There are a few different regimens for CMF.  I am starting on a 28 day cycle, with chemo given on days 1 & 8.  The first dose of CMF was relatively uneventful.  The nurses accessed my port and drew blood, took my vitals and then Dr C did a quick exam.  He still can't feel my liver, which is a good sign (I was getting pretty paranoid and nervous given that I had been off of chemo for a few weeks!  My body was certainly feeling stronger, but I just don't trust it... and am much more comfortable now that I am back on the chemo train).

Prior to the chemo itself, they give me a steroid (dexamethasone) and Aloxi to prevent nausea and vomiting.  The Methotrexate & 5-FU are both given by an IV "push" (the nurse pushes the drug from a syringe into the IV line).  The Cytoxan is an infusion and it is given over 1 hour.  All told, the visit lasts about 3 hours... it is pretty mentally tiring, so I often take a pretty good nap after chemo.

When I went in for my second dose, my white blood cell counts came back quite low.  Dr C decided to still give me chemo, but he cut the dose in half.  I also took a Neulasta shot this week (to stimulate WBC production) -- we are heading to Mexico for a family vacation and Mexico is not someplace that I would like to wind up unable to fight off an infection due to low counts. 

So far, the side effects are fairly manageable.  While I don't feel great on Wed/Thursday, I also don't feel awful.  A little slow, a little nauseous, but overall, I can't really complain.  Most likely, my hair will "thin" but I shouldn't lose it all.  It would be nice to hang onto my hair for a while since it is finally starting to look like a normal haircut once again.  Though, if you could promise me that the chemo would work, going bald is a small price to pay!

Next chemo is Feb 7.  We'll have to wait and see what my counts look like -- they may play with the dosing a bit to avoid any disruption due to low counts. Hopefully, the two weeks off will be enough to rebuild my strength and we'll keep on moving with this current plan.  If not, we'll have to get back on the train and head to the next station.  There are still a few approved drugs/cocktails left to try, but I am really hoping that CMF works well and that it holds the beast at bay for a good long while.

Bright yellow methotrexate

Cytoxan

on to 2012

New year's eve 2012 will go down in history as the night I made the best lasagna I have ever made. For serious.

While Mike does most of the cooking around here (he is much more talented in the kitchen than I am), I still like to get into the kitchen once in a while to whip up one of my favorite recipes -- snickerdoodles, Bonny's banana mango nut muffins, and New Year's lasagna.

Somebody once told me that it was "good luck" to ring in the new year with lasagna... and since that time, not a year has gone by that I have omitted the ooey-gooey deliciousness from my new year's menu. The first year I made a new year's lasagna was to ring in 2006 -- my first new year with cancer.

I was bald. I had just finished chemotherapy. I had one boob and one "foob". All the more reason to bid "good riddance" to 2005 in style. I had so much fun that evening that I forgot all about the lasagna, cooking away in the oven. It baked for 3 hours -- but not even a semi-burned lasagna could dampen the spirits of those present that night.

I learned early on that "who you are with" is much more important than "where you are" on New Year's Eve.   I spent some time digging up some old NYE photos -- and I am so thankful for those memories!  It seems as if every year, I was exactly where I was supposed to be... or more importantly, I was with exactly whom I was supposed to be with!  One look at the smiles on our faces and you know that is true.  (I've tried to assemble a NYE timeline below --- but a few years are missing!  If you have a memory, please share it!)

Even in the tougher years, NYE has always offered a reason to smile.  It's the dawn of a fresh, new year... ready to be explored... ready for adventure and laughter (and yes, probably some tears).  The beauty is, it is a blank page.  A story ready to be written.  And I can't wait to see what surprises await us this new year.  On to 2012!

2012:  Casills, Scotts, Coynes at our house

2011:  Casills, Scotts, Bells at our house

2007-2010:  I need to dig up these memories!  I can't find any pictures, but I am fairly certain that we rang in the new year with friends at our place in Westampton  (with the exception of the year that I was sick and we had to postpone our party to the following weekend!)... anybody with firm memories for these years, please share them!!!

2006:  Nancy, Hillary/Bob, Jim/Cindy, B Lo, Rowley, Mellen/J, Susan at my townhouse in Westampton

2005:  "Last minute party" at Nancy's house

2004:  Skippy's house in Philadelphia (we were still driving around looking for parking when the clock chimed midnight!!)

2003:  Night out in NYC with Nancy & friends (Off the Wagon?)

2002: I *think* Nancy & I rang in the new year at Harvest Moon in New Brunswick with Walt & MJ?  That was either 2002 or 2001?

2001:  Southern NYE at Ziggy's in St Simons, GA with Sarah & Jennifer

2000:  Kozmo.com party in NYC