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.