Certain Uncertainties

It is update time again. Six months of chemo, loss of one breast and 12 lymph node and six weeks of "aggressive" radiation treatment topped off with the forcing of early menopause (can you say hot flash?) is all behind me. Moving forward, I will continue with a herceptin infusion every three weeks to block HER2 protein as well as a daily pill that blocks estrogen as both of those feed my cancer cells. And unless insurance changes, I'll also being making a quarterly trip to Philadelphia for those liquid biopsies that will hopefully allow my doctors to still be winning the "Whack-A-Mole" game that is treatment of stage 4 cancer.

All in all, I feel pretty good. Sure, there's still a few side effects left. "Chemo brain" is a real thing. I misplace or forget things more often. (Or writing a blog post and forgetting to publish it!) Still have some minor discomfort from the radiation and surgery. The pill makes my joints ache when I first walk around upon waking up (but is gone within 10 minutes). I do have some minor lung damage from radiation that complicated a chest cold, eventually turning it into a sinus infection (but that was knocked out with drugs.)

Hard to believe I'm coming up on a year now since my diagnosis then subsequent treatment. I find it rather fitting that my daughter's graduation party, a pure day of celebration for me, is on the anniversary of my learning I have cancer.

Wow though. What a year!!  Just 12 months ago, I was absolutely convinced that I just had a cyst. The very symptoms that are typical of inflammatory breast cancer (IBC) were atypical of breast cancer as I understood. They actually reassured me that it couldn't be cancer as I had no idea IBC existed.  So I put off going to the doctor for a couple of weeks as I was dreading having it drained by a needle.

It's really amazing how clueless I was. Even after my primary care doctor insisted I go that afternoon for a mammogram and then that doctor insisted that I have biopsy that day,  I STILL believed it was a cyst. I will never forget when I asked the doctor as she was doing the biopsy if this was going to drain my cyst or do I have to go somewhere else. First her eyes showed surprise, then became gentle and full of compassion, she took a breath and said, "You have cancer. What we don't know is what kind and what stage. This test will help your doctors determine treatment."

She finished the procedure while I cried silently. After she left, her nurse told me it was going to be ok. It will be a very difficult year ahead, but in the end, I will probably be fine. Probably. I heard that qualifier. And it was in that moment that my life felt completely uncertain and out of my control.

Well, to clarify, life is always uncertain. However, I didn't operate as such. I took for granted a great deal.

So, that nurse was right. It has been a hard year. Life as I knew it came to a grinding halt. The depth of sadness and fear took my breath away at first as I processed that I may still have years ahead of me… or just months. I've come to know women who are midway through their 2nd decade post diagnosis… and watched others die within a couple of years after finding out, despite all the treatment.

But here's the thing. My life also became incredibly beautiful to me because I learned some certain truths:

One truth is that no matter how hard I find my situation, how sad or scared it makes me feel at times… there is someone out there who looks at me and wishes they had my life.  I have so many blessings… the love and support of family and friends, great medical team ... resources to fight this beast. I not only got to be a mother but one who got to enjoy my kids' entire childhood. My not taking the time to be grateful for these things feels like I'm adding insult to injury to the woman who wishes she was so lucky.

Another truth is that regret of past mistakes and fear of an unknown future literally robs me of the joy that can be had today. As my days might be limited, I'm not going to waste them! Every day has something positive in it, if I'm willing to look for it and/or look past the negative aspect. It's up to me.

While it may be so cliche, carpe diem is the way to enjoy today and avoid regret tomorrow. There is the reality that at some point I will likely have to undergo chemo, surgery and/or radiation again, which means that what I can do today, I won't be able to do.

Last but least, I've been given a gift that those who die suddenly don't get. While I hope I won't have to "wrap things up" with my life for years to come, I get to do that. The people I love won't be haunted by what they didn't get a chance to say… or what they needed to hear from me. Truly, that's an amazing gift.

Bottom line, my life isn't totally uncertain as I first thought upon hearing that "probably you'll be fine." There are certain truths in which I can count upon. How long I live might not be up to me, but HOW I live is completely my choice. I can choose to wallow, to live like a helpless victim, or not. I'm going to go with the not.

I choose embrace a life based on gratitude and hope… life focused on the joy of TODAY… not the regret of yesterday or the fear of tomorrow.  Of this, I'm certain is the key to happiness. Regardless if one has cancer or not.

Shouldn't I Be Glowing After 7 Weeks of Radiation?

It has been so long since I have posted here. Part of the reason I've not is because my medical updates have been pretty brief along the way so just used Facebook. The other was the radiation treatment was happening during the time of day I write (mornings). Afternoons were out because I was tired… then as treatment progressed, it became uncomfortable to sit and type for long period of time. And then there was the part that I was most comfortable naked which eliminated working at my desk as my office is in the sunroom!

So let's see… last I wrote here I was recovering from the mastectomy. I'm too lazy to go back to see what I wrote so not sure if I admitted that I had a super hard time looking at my missing breast. Up until recently, I managed to just see it out of the corner of my eye (and that took a couple of weeks to work up to doing that). But caring for the radiated area demanded I actually look at it.

Oddly enough, I think the radiation actually helped me in that regard. The skin got really gross as my treatment plan needed to involve the skin from center of chest to arm pit to collar bone to bottom of rib cage. (IBC has a nasty way of getting into the skin so we didn't want to take any chances.) So after looking at that gruesome mess for a few weeks, the healed over missing breast chest was a vast improvement!

Which reminds me… tip portion of my post: If any of you dear readers ever have radiation with "aggressive use of a bolus", three words for you… 1) CeraVe; 2) Percocet; and 3) Mepilex.

I had a reaction to what is usually the rock star of topical ointments for radiation (Aquaphor) so doctor suggested CeraVe which was a little slice of heaven when smoothed on. This stuff is creamier than the super thick vaseline like consistency of the other, so it you need not use any pressure (which hurts) when applying. I kept mine chilled for even more relief.

The pain reliever should have been obvious.. but instead of taking as directed on the bottle, I waited for it to go from uncomfortable to super painful (and man did it hurt, not even the first post-mastectomy days hurt like that). Once I started taking it when scheduled, never reached that painful state.

The Mepilex is something you can't get at the store or pharmacy… but can get online for a small fortune but if you have an awesome doctor like I do, she gives it you. It's this dressing that breathes (very important for the healing process) but acts like the missing skin in terms of being a barrier. Even the softest fabric hurt when it touched that area.

Tip portion concluded.

As it was predicted, the pain and exhaustion continued to get worse for about a week after my last treatment. Then it started to turn around. Each day, it hurt a little less and I had more energy.  Now, at 10 days out, I feel like a new woman. Being able to comfortably wear a shirt is something I'll never take for granted again. I expect the fatigue to linger a few more weeks but an afternoon nap doesn't mess with what I need to do each day so no complaints.

Let's see… what else? My doctor switched me to a different medication (Letrozole instead of Tamoxifen) to target the cancer cells that grow on estrogen. So far, those pesky heat flashes are far less.

And I started another targeted therapy for the cells that grow on this protein called HER2.  That drug is pretty awesome. Before it came along, since HER2 positive cells are super aggressive, it was bad news to find out you had them…. now because of this drug, it is just one more weapon to use to keep the beast at bay.

Personal bonus is there's a made for TV movie about how the drug was discovered and approved starring my personal dreamboat, Harry Connick Jr. So it's his face I see in my minds eye when I give thanks to the guy who invented it at infusion time. (That's another tip… every scan, treatment, etc... give thanks it exists even if uncomfortable/awkward because when in a place of gratitude it makes it all so much easier to bear, it's like magic!)

Also while I was neglecting my blog, I also added to my medical team the IBC specialist in Philadelphia. Because he has treated primarily my kind of cancer the last 20 years, he's seen significantly more patients than my local doctors given this disease only represents 1-5% of all cancers. Plus, he's researcher so is the first in line for new information and technology. With the latter advantage, he's been having me do these tests called "Liquid Biopsy". It basically is a great way to not only know what medication is likely to work on my cancer but let's us know a tumor is about to happen so we get a jump on the sucker.

Last two liquid biopsies came back negative for new tumors existing or about to happen. The last scans showed there is still spots in my spine but they look like they're super slow growing or dead (yay chemo!). So I feel like the next few months are going to be relatively easy with just the infusions every 3 weeks and the daily pill (barely any side effects). So I'm sliding in a really fun family vacation before the results of the next test will come back. Thinking about in late June and early July finally seeing  Grand Canyon, Great Sand Dunes, Moab, Zion, Great Salt Flats and Vegas (Baby!)… super excited.

That said, this last week, one of the women in my online support group died. Kore was a loving mother, wife and daughter. She touched my heart even though our communication was limited to just online.  And from the outpouring on FB from the people she knew in real life, her spirit was indeed accurately projected online. I've cried a few times for her… and for me.

It was also a sad reminder of just how deadly IBC is and how fast it moves once in a vital organ that can no longer be treated with what is currently available… my take away was it makes TODAY that much more precious. TODAY is the day to see the beauty and feel the love all around you. Letting the fear of what may happen a few tomorrows down the road literally robs you of that.

It also feels like a disservice to Kore not to embrace and enjoy all that the day has to offer. So on that note, I'm going to go to church now then make an awesome brunch for my family.

And Just Like That

Today I experienced my first "IBC Sister" death.

M was also the very first person I ever met who also had my weirdo form of breast cancer.  A mutual friend connected us after my diagnosis. Like myself she was diagnosed with Stage 4 with a small lesion in her bones. M was to be a source of practical information as well as source of inspiration because she was disease free after undergoing the same general treatment plan I was about to undertake.

Sadly, she found out just two months later the cancer was spreading in her bones and it was becoming painful as well as scary. We exchanged messages about our chemotherapies and fears. Then a few spots appeared in her liver in December. Last time I heard from her, she shared had been enjoying some good evenings despite the pain and fatigue. Fifteen days later, she is gone.

Just like that.

I'm familiar with the most often path this disease takes. It's highly unlikely that I'll be giving Betty White a run for her money in the Spunky Old Lady category. The path this disease at Stage 4 most often lasts about three years from diagnosis. But not always. My reasonable prayer that I live, either NED or various treatments, long enough to see my now late teens children out of my nest and settled in their own nests. It has indeed happened!

Yet, I was still totally caught off guard by M's passing, even though she followed that most likely path. I found myself crying for her, for her children… and for me and my children as I imagined 2 years into the future.

Then I took a deep breath and looked out the window at the very prettily falling snow. I focus on today. Today, I'm actually feeling much better than I did two weeks ago, right after my mastectomy. Heck, I'm now able to give again a two armed hug. And in about 20 minutes my kids will be home so I can take advantage of that regained ability.

As the fear and sadness continue to ease out, my father happened to call. I shared with him what had happened and how I was feeling. He reminded me of the faith I used to comfort him with when I was a little girl: God has a way of making sure things work out just right.  Kids walked in and poof, I was good again.

Just like that.

Parent & Doctor Styles… Plus Pathology Report Results

Yesterday, I had my follow up appointment with my breast surgeon. Everything is healing quite nicely and she admired her own handiwork which I appreciate on a couple of levels.  These annoying dangling drains need to stay in a bit longer but expect both to be removed by end of next week.

Once again, I was struck by how interesting that the heads of my cancer treatment team have some key similarities to my parents. Dr. F (surgeon) reminds me so much of my mother in her To The Point attitude. She is efficient in her words and movement. But make no mistake, not only is she very good at what she does, she also cares a great deal. Like my mother, she's a "here's the problem… let's fix it rather than discussing it to death." (Not that she won't answer questions.) There's room to be sad or scared, but let's not stay there too long as it is counter productive. She cracks me up like Mom does.

Dr. R (oncologist), is much like my father. Patiently explains things in detail plus watches every movement and tone of voice to understand how I might be feeling. Also similar to my father, he is gentle and sweet but very wise. And he's a hugger, too. Being around him produces that same "everything is going to be ok" feeling.

However, despite these differences, I trust both completely and actually appreciate having both approaches. It brings a balance to my world that feels "right", just like my mom and dad.

Speaking of my doctors, part of the appointment was to discuss the results from the tissue removed. The pathology report itself was a mixed bag. There were some disappointing, reassuring and confusing results. Here's the breakdown as I understand it:

Bad:
The cancer in my breast and nodes either grew back or that PET scan in November that showed "No Evidence of Disease (NED)" wasn't accurate.  The breast cancer surgeon believes it is the latter. As my oncologist had prepared me from the start that the post mastectomy pathology report might show cancer cells because it is hard for a PET to see under that thickening of skin, I'm inclined to believe this is what happened too.

Good:
It had though, shrunk considerably in my breast and she got it all.  Report noted that there was no cancer on the outer edges of the tissue removed so that means it is likely that no additional surgery is needed in that area.

Bad:
Out of the 12 nodes she removed, all 12 were positive for cancer. This is what has my surgeon and oncologist concerned. One of the jobs of the nodes is to be a filter of sorts. Once the Mothership started sending out "scouts", they have to pass through the nodes. If only 1-2 nodes show up positive, there's a chance that no or just a few of those "scouts"made it out. But all 12 mean she was bombarding and possible that a lot of them are now loose in my system… and may set up "tumor camp" in a vital organ.   No way to know for sure at this point if any have landed or when they might land.

Good:
I belong to an online IBC support group and when I shared my report, I had many explain they got similar news with the nodes but radiation did an awesome clean up job and they went on to that coveted status of NED. I will be starting radiation in 2-3 weeks.

Possibly Bad:
My cancer may have mutated from being the kind that feeds on hormones to one that doesn't. Also possible that it mutated to a more aggressive type called HER2 positive. These mutations, I have come to find out are common with IBC. More testing required. If indeed it happened, it is more difficult to treat but not impossible. It leaves up in the air exactly which targeted drug treatment I will be doing now.

Bottom line Good:
Both my doctors are such dedicated ones who don't put ego above their patient's wellbeing. IBC is rare, so they only saw 1-2 cases last year and are concerned there may be treatment options that they simply don't know about trying.  So they are going to present my case on Tuesday to a board of doctors to get their input.

She also wants me to go ahead and see an IBC specialists… and it turns out the one that is closest to me (Philadelphia) is one of the very best. Instead of only seeing 1-2 patients per year, that's all he treats. A few of the women in my online and one in my local support group have been treated by him and have only great things to say.  I will have to undergo many of  the same tests again as he doesn't want to miss something due to a typo or a mistake on technician's part. Goal is to get in after drains are removed and before radiation starts. Will know on Tuesday how likely that will be.

I wonder if this new doctor will be like my mom or dad… or maybe a favorite aunt or uncle? Or grandparent? He won't be replacing my team, just providing more treatment options that my local doctors will implement.

Update Time

For those friends who are on Facebook with me, you know I spent part of last weekend in the hospital. I had a fever and they wanted to rule out any infections running amok given my immune system is compromised. After a series of blood tests where they could find nothing and being given antibiotics just to be sure, I got to go home around 10PM and sleep in my own bed. It's a comfortable hospital with great staff, but my own bed is so much more comfortable. 

So it turns out that my delay in surgery (or Removal of Mothership as I call it) isn't just because of August's blood clot. As it often happens, cancer adapts to the given chemotherapy so stops working.  The "Hammer" got us halfway to an operable sized tumor, but time to switch it up. I'm now taking Xeloda. I'm thinking of nicknaming this one the "Tiffany Treatment" for reasons which will become clear by the time you get through this post. 

It has been difficult to accept that there is no set timetable for the next steps, especially with the holidays around the corner. No way to know how long it will take or if my cancer will become chemotherapy resistant again. That is the downside…  but there's actually an upside!

This new regimen is so much easier on my body than the other one. It's a daily oral chemotherapy that I take for two weeks then have a week off before starting again. It doesn't become the full blown "chemotherapy" until it has metabolized in my body and in the actual cancer cells. Which is why the side effects are only mild to moderate. 

For example, my immune system doesn't take the hit it did on the "Hammer". So in a couple of weeks my ban on indoor settings that include lots of people as well as raw fruits and vegetables will be lifted. There is some fatigue and mild gastro type issues, but so far, not the show stopping kind. My hair should start growing back too! 

Only potential side effect I dread is hand foot syndrome.  That makes it painful at times to walk and use hands but that doesn't happen the majority of time. In short, it's not unrealistic to hope for a quality of life improvement the next three months. I say three months as that's how much was delivered last week. Could be taking it for more or less time. 

Now it is delivered because the cost of this chemotherapy is so expensive, you can't get it from a pharmacy.  The price of it is why we didn't start with this drug too.  It is crazy expensive. No insurance company will approve paying for it until the less expensive treatment (that is often effective) stops working.

At first, I was annoyed we didn't start with this therapy… I would have avoided the mediport surgery, clot issues, hair loss etc. Then it occurred to me that when this one stopped working, I'd have to switch to the "Hammer". Going in this order, it's like a gift of sorts.

Between that and the cost of it, hence the nickname "Tiffany Treatment". Seriously thinking about putting the pills in one of those famous blue boxes. Imagine how fun that would be to open twice a day? I could even include a "why thank you George Clooney!" right before opening.  

Speaking of famous movie actors, I watched with my daughter last night a classic tear jerk chick flick: Steel Magnolias. (Stop reading now if you're someone who never saw the movie and want to see it.)  As I had seen it in 1989, I forgotten a lot of it.  I knew the plot but not the details such as the scenes between the mother/daughter characters.

The hardest for me to watch was when the daughter was dying and it was breaking her mother's heart. It occurred to me that there's a chance my own mother is going to have to go through that. As a mother myself, I know the pain she will feel… and it made me cry to imagine her having to face it.  Even the next day, as I write this, my eyes well up to picture her in such pain.

Before any one thinks I've given up, that's not the case at all. I'm still hoping be a part and taking actions that show promise to land me in the group of people who live for decades with cancer.  But I'm very much aware that things don't always go the way you hope. I know if that's the case with me, while not going to rejoice, I know I'll be at peace with it.

It reminds me yet again something that I know is often hard for some folks to grasp: What I'm dealing with is emotionally hard on me, but it is much harder on those who love me. Even at this stage, I can hear it in their voices and see it in their eyes just how difficult it is for them.  Which is why I'm even more pleased with the new chemotherapy. I anticipate as I feel and look better, it's going to ease the fears/sadness of my loved ones.

Yep, I really need to investigate storing my new chemo drugs in a Tiffany's gift box!

Pinktober Backlash

It seems everywhere I turn this week, there's a pink ribbon on something as it is "Pinktober", the month dedicated to raising both awareness and funds to support breast cancer research. And in my following news related to my stage of cancer (4), I see a backlash against this campaign. Some are more angry or passionate than others, but the theme is that very few dollars (and therefore little progress has been made in recent years ) is going towards extending or saving the life of those with stage 4 or metastatic breast cancer.

For those who don't know, that's when the cancer has spread from the breast, most often the bones, lungs, liver, or brain. Unlike the other stages, this cancer has no cure. It may go into remission and/or be treatable for years but almost 100 percent of the time, it kills you in the end.

Personally, I don't feel any anger that only two percent of all those funds raised goes towards curing/treating those at stage 4. It's hard for me to find fault as not only have I've benefitted from the raised awareness, but I'm all for increasing the survival rate of anyone who has cancer. It does make me  very curious.

Not to be a downer, but 30 percent of those who were diagnosed with an earlier stage cancer, even after a successful treatment end up with metastatic cancer later down the road.  If only two percent came back at stage 4, it would make sense to me.

Is it more of an image thing in fundraising? It is easier to raise funds for a cause that is saving the lives 70% of people?  People just like backing a cause with better odds? As someone with a marketing background, I see that being a much easier, campaign to create and execute.  Speaking of the marketing side, I have to admit I so prefer the "ribbon" (pictured in upper right corner of this post) designed for the campaign to raise awareness for metastatic cancer. Much more interesting than the solid pink if you ask me.

If this "Pinktober" you're looking to donate to funds for breast cancer, consider donating to research dedicated to save the lives of folks like me who are fighting stage 4 breast cancer. Click that multicolor, interesting ribbon to go to a fundraising site specifically for that purpose. Thank you to all who have and will donate to either ribbon cause.

TV Therapy

My son and I have discovered via Amazon Prime, Showtime's The Big C. It is a TV "dramedy" that ran from 2010 to 2013 about a family with a mother close to my age with son same age as mine. First episode she is diagnosed with terminal melonoma as it has spread to vital organs. She has been given 10 months to two years to live.

Most people are surprised we both enjoy this show so much as you'd think it hits a little too close to home. (Reminder, though stage 4, my cancer hasn't spread to any vital organs at this point, so treatable for years.)

I think the real draw for us is to see these rather quirky characters not just navigating through some of the hard things we are but doing it in a way that leaves us laughing. It is awfully hard to be sad or scared if you're laughing.

This is been my personal belief for years…  one I'm practicing with my family and friends as we deal with my cancer. As I was just telling a friend yesterday, I think cancer is hardest emotionally on the people who love the person with it. Because I love them, I seek every chance I can to let them know that while it sucks, there are so many blessings that keep emerging.

One of the favorite games I taught my kids is sort of like bingo.  Whenever something great falls into our lap because of cancer, the first person to shout "Cancer Perk!" wins.  And there are so many, many perks!  First of all, during Hammer Week Chemo, I have friends bring dinner every night for five days. Which is great just for the tasty meal but also I enjoy the chit-chat at drop off. Sometimes it is a friend I've not seen in person in weeks, sometimes months even.

Cancer got both of my parents up here for a visit. Both of them were on a generous mission to make our home as comfortable and entertaining as possible, so a few rooms were organized and redecorated (which included the addition of a giant "smart" TV).  One of my favorite people comes out every weekend to run errands with me then just hang out. It also brought a dear friend from Minneapolis who I've not seen in years. New friendships are also developing.

But wait. There's more! Thanks a couple of breast cancer charities, we have a cleaning service and in the spring/summer, access to a vacation house on the beach!

The biggest "perk" though, the one that my son and I find ourselves recognizing and discussing after watching The Big C, is how it has made us reevaluate our priorities. Of course, he is scared of the idea of my dying while he's still in high school or college, but he's pushing past that and embracing the focusing on today.

Today, I may look a little funny with the hair loss, need him to wash his hands a lot and I need a nap… but otherwise, nothing has changed other than we're now both have a new awareness that we should enjoy today as we don't know for sure how many tomorrows together we have.

Our new focus is to cherish the people that really matter and the people who just bring us down, just politeness is all they get. Our activities (family or personal) are also viewed from this point of view. What is the most valuable and enjoyable use of our time? Material objects seem far less important. For Christmas, we discussed the idea of just one gift and the money we'd normally spend, put that into a really fabulous trip. Our entire family agreed that we enjoy travel far more than new games, designer clothes, gadgets, etc.  This concept was sparked by an episode in the show! Indeed this is "TV Therapy".

We're now in the third of out four seasons, based on the writing style so far, my gut is telling me there is no miracle for the lead character. Which will be hard for us both to watch when the 4th season winds down but I expect it to be just as therapeutic. And hopefully, we will be laughing at it so when my time comes—be it two or 30 years from now—we'll also see the funny with the sad.