#LiveLikeMichelle

This is a blog about a woman who refused to let a diagnosis define her life. Who refused to let the fight against cancer take away her desire to live. It’s about a woman who decided to be an example as a mother, a wife, a daughter, a sister, and a friend. 

On February 28, 2015, Michelle was taken from us, far too soon. Unfortunately through a glitch in the internet, her original blog, michellewillwin.blogspot.com was taken down shortly after. While many were saddened by this, understandably, there was one copy of her total blog that remained. Towards the end of her time I worked with Michelle and discussed with her the possibility of taking her blog and turning it into a book. A book that would be a compilation of her story, from diagnosis to her death, as a way to share her life and how she chose to live it with the world. While that project is still in the works, I decided that instead of keeping her blog only to myself, as a way of helping others reconcile grief and try to reconnect with Michelle through her own words, to try to relive some of the most joyful moments and those that were just so perfectly Michelle, I would republish Michelle's blog, from beginning to end, here for everyone to see. What follows is Michelle's blog, every entry, complete with pictures and original comments as designed by her hand.

I hope as you read through these posts, complete with all the comments that were originally posted alongside them, that you, like me, are able to smile and remember Michelle exactly as she was. A bright spot in this world. Someone who loved and was loved by many. 

Thank you.

Legacies

Legacies

Friday, February 28^th at 6:45pm, Michelle Whitehead Hastings passed away. She left this world peacefully, quietly, and with the loving arms of her family around her. Before she passed she expressed many wishes for things she would like to leave behind in her wake. Some of them she was able to accomplish, while many more were left unfilled, at least for now. One of her wishes was to put together a final blog post for all of the people that have been with her throughout the past seven years. Words she wanted to leave behind for all of us. Unfortunately, Michelle was not able to write the final chapter quite as she had hoped.

Over the last several months, I have pored over her previous blog posts, her Facebook posts, and most importantly I was able to speak to Michelle directly about what she had wanted for her final post. So if you will allow me, I would like to create that final post in Michelle’s memory.

It would be easy to make this post about cancer, or the battles that people fight against it. It would be easy to pull up some data and tell everyone how early testing has been proven to be a solid preventative to colon cancer. It would be easy to tell you all about how the Cancer Treatment Center of America may well have given us the last three years with Michelle that we would not have had without their assistance. But I’m not going to talk you about any of that. Michelle has done that for us all already. Today, I only want to talk to you about her legacies. I want to talk to you about what Michelle left for the world and how she did the best she could in 38 years to fill it with love, laughter, and brilliant smiles.

Og Mandino said “I am convinced that the greatest legacy we can leave our children are happy memories: those precious moments, so much like pebbles on the beach that are plucked from the white sand and placed in tiny boxes that lay undisturbed on tall shelves, until one day they spill out and time repeats itself, with joy and sweet sadness, in the child now an adult.”

I do not know if Michelle ever read these words, but even if she didn’t she certainly lived them. Michelle managed to touch so many lives over the years, but in her life the most important ones she touched were those of her children, Julia and Kevin.

Michelle leaves as her most important legacies two children who, in their strength, their beauty, their intelligence, and in their zeal for life, embody the work and greatest desires of their mother. Julia is a gorgeous twelve year old girl who loves music and art, whose singing voice was always able to bring a smile to her mother’s face and a tear to her eye. She loves writing and rewriting songs, taking melodies she loves and making them her own. She also loves to draw and bring to life with pencil and pen her thoughts and ideas. She is such a fiercely intelligent girl, bringing logic to life and easily turning the smallest of ideas into a hilarious joke.

Kevin is an amazingly intelligent eight year old boy who loves math, sports and fast cars. You can’t help but crack a grin while he is putting his Papa in time-out, or telling Nana how he just doesn’t think it will work to have her to come over and jump on the couch with him. He loves his family so deeply and is a testament to the love that he has been shown from both his mother and father.

One of the things Michelle was adamant about over the last few months, knowing that time was growing short, was that she was not going to allow this to become about her “losing her battle” with colon cancer. Many would see this as a fight for her, a fight against a disease that took her from us far too soon. But Michelle never allowed her diagnosis to define her. Instead she chose to live despite that diagnosis. She chose to live every single day to its fullest. To cherish the moments it brought her, both good and bad, and to make the best of every single one of them.

Several months ago she created a hashtag that many of you have seen; #LivelikeMichelle. While this may have been a revelation to many of us, to those of us that knew Michelle for any length of time we already knew that this was merely an expression on social media of something that Michelle had been doing for decades. For some people, this message may be the most important legacy to carry on in memory of Michelle. To live every day, every hour, every minute to its fullest. To remember to let go of the things that truly do not matter, and to embrace the things that do. To love like no other and to live in every single moment, rather than to let them pass us by.

In addition to talking about Michelle’s legacies, I would be remiss if I didn’t also talk about the three people that have remained closest to Michelle throughout her life, and who meant so much to her particularly in the last few years. I mean of course her loving husband Levi, and her dedicated parents, Jim and Lee Whitehead.

Lee and Michelle Hastings were married on December 29, 2001, and their love has seen them through all the years since they walked down that aisle together. In speaking to Michelle just a few weeks ago, she truly struggled to find the right words for just what Levi has meant to her. Although he may never read this, I want it to be known by everyone that does that he lived up to every vow he pledged to Michelle 14 years ago, that he is a valued member of our family, and that he has our love.

Mom and Dad’s role in Michelle’s life can’t be understated either. Michelle and I talked at length about how she appreciated everything that Mom and Dad did for her throughout her life, from taking care and raising her through her childhood, to helping her immensely, especially in the last few years while she struggled with her disease and everything that came with it. Michelle was and always will be loved and treasured by our Mom and Dad.

In closing, I want to take a moment and thank every one of you. While I could try to reach out to everyone she touched over the years, Michelle’s magnetic personality has brought so many people to her side that to do so may be a book by itself. Your thoughts, your kind words, your songs and simple statements of love and support have meant the world to Michelle and to our entire family throughout the years. Michelle wanted, at the beginning of this blog, to simply have an outlet, a place for people to get updates on her situation and her life. In the last seven years it has managed to become so much more than that. It became a beacon, a place for people to come together. It became a place where people could not only follow her story but to learn from it. Michelle’s blog brought many people together, and it gave her hope and steadied her resolve. It showed her that the choices she was making, to live the way she chose to despite her diagnosis, were the right ones.

In the future, we will be working to bring together the collective work of her blog, as well as her other efforts on and off of social media in a book that we will work to publish and reach a broader scope than it has until now. From our friends and family, we ask that you take some time over the next several months and bring together some testimonials of your own to contribute to that effort. Please take some time and send a message to livelikemichelle@gmail.com that includes a brief story of how Michelle and her story touched you. How she, through her work and her life, were able to affect you. Keep in mind that not all stories will be able to be included in the book, but that we will make an effort to read each and every one and to keep everyone up to date on its progress.

While Michelle’s body may have passed beyond the fold, it was vitally important to her that she knows that her spark, her spirit, and her fire live on. It can and will live on in our families, and I encourage each and every one of you to carry her memory, and let her live on in yourselves as well.

From the Hastings and the Whitehead families, we thank you all.

Bob Whitehead

JANUARY 9, 2015

Long Overdue.....Sorry!

I felt like I haven't been able to take the time to really update you all on everything that has happened these past few weeks, and to let you know how bad things have gotten.  So, here goes....and, pls forgive the typos, b/c I am on Levi's tablet...

As you know, over their past few months, my back pain has continued to get worse.  As I have worked with the pain dr, we keep trying to stay ahead of the pain.  In the beginning of  Nov, pain dr wanted to do an MRI to determine if there was something physiologically wrong.  And, because of the severe back spasms I had while going into and coming out of the MRI/general anesthesia, I ended up in the hospital. 

I haven't told many ppl just how bad the pain got.  At one point, I almost wished for death.   The pain was completely unbearable.  It was hands down the worst pain I have ever experienced.  Just all consuming. 

Finally, after getting several administrators involved in the process,  they put me on an external pain pump, like the ones you get after surgery, where you push the button to get the extra meds.  Honestly, this is the only way we were able to keep the pain under control.  For tne first 2 days (Thurs and Fri), I was completely bed bound.  My body was so tired and worn down, I didn't even get out of bed until Saturday morning. 

Over the next week or so, there was a lot of background work happening to get me pain relief.  On the following Wednesday, they did a test to confirm that my pain pump was distributing the right amount of medication in the correct location.  During that scan, they realized that my right kidney is enlarged.

On Thursday, the pain dr moved my pain catheter to a lower area in my spine, which has helped.  I spent the next few days recovering, trying to get stronger and ready to go home.  On the Monday, I had a renal scan, which is an easy test to teIl the dr how my kidneys are functioning.  I was also told that, barring any major issues, I should be able to go home the following day.

Well  it's me, so there was an issue on the renal scan.  My right kidney takes about twice as long to drain as my left kidney, due to some unknown constriction in my ureter (the tube that drain the kidney into the bladder).  The solutions presented to me were a nephrostomy tube and bag, or a stent.   The tube/bag, which is what I went with, is basically a small diameter tube that runs from my right kidney, out a teeny incision in my back, and then connects to a larger tube and a collection bag, which I have to empty several times during the day.  At first, it was pain to get used to, but I each day is a little easier.  If I had chosen to go with the stent, that would have meant a tube with corkscrews at either end but the unit is all internal, used to hold the stent in place in the kidney and in the bladder. The potential problem with the stent is that in about 80% of people, the stent causes extreme pain and discomfort.  So, I chose the bag.  The open incision for the neph tube in my back is covered by all sorts of bandages and stuff, so a) it doesn't move, and b) it doesn't get infected.  I go to CTCA each Monday to get the bandages changed and checked.  So far, it isn't awful.  Kind of a pain in the butt, but I am getting used to it. 

So, while I was in the surgery for the neph tube, I got a voice mail from the place doing clinical trials, letting me know that the 2 trials I have been waiting for word on, have opened up.  *sigh*  So, the neph surgery was Tuesday, Wednesday I went home, Thursday I rested, and Friday,  we were at T-Gen, talking with them abt what options are available. 

The following Tuesday (or maybe one week later..., I can't remember anymore...) I started going to TGen to start the clinical trial.  Oral pills, 2x a day.  First day was a 14 hour day.  I slept most of it away.  They needed me there to take labs, do EKGs, etc.  The next day was only a 4 hour day (remember it's almost an hour there, one way, with no traffic....), but I was running a low grade fever.  Over the next couple of days (with no follow up from TGen to see how I was feeling), I was completely immobilized due to a stomach bug that the kids shared with me. 

Follow up with TGen a week later showed 9.5 lbs lost and many missed doses of the trial drug.  My Dr talked with the sponsors of the clinical trial and I was allowed to continue, in spite of being weakened.  Next week was okay.  Third week, TGen let me go 4.5 day with an undiagnosed UTI, which I am not kidding you, almost killed me.  I was in so much pain and so exhausted, it was awful.  Thank goodness for the fetal position and antibiotics.

Anyways, because of the 1-2-3 punches I have had over the last, well  6 weeks, I am in quite a weakened position. I am pretty much bed/couch ridden, and need everyone else to help me with meals, laundry, etc.  I mean, I am completely wheelchair bound when we are out and about, and in the house, using my walker almost exclusively.  I fell out of bed a couple of times, so we have had to make some serious changes to stop that from happening.

Meantime, I have also been dealing with what can only be described as low-level electrical currents running thru my body, esp in the afternoon and at night, causing my entire body or Individual limbs to basically spasm.  I have been resting on the couch, and my entire body will just jerk or jump, hardcore.  I have thrown my phone 3 1/2 feet, or spilled water on myself.  It was so bad, you guys. 

On New Year's Day (the day my MIL came back into Phoenix), I had a particularly bad episode,  and Levi and my parents took me up to CTCA.  They switched up my meds again, from some pretty hefty drugs to, of all things, Midol and Valium.  It would be funny, except for the fact those two things stopped the spasms, and I now consider them the nectar of the Gods.

So, where am I right now?  Because of the drastic change in my  "clinical well-being", as I think they called it, I am no longer on that trial.  Thank goodess; I have a couple of weeks off of the trial drugs, and then I meet back up with my clinical trial team on the 28th to figure out what I want to do. 

I would be lying if I said I knew what I was going to do.  We haven't had very good luck at TGen, so it's hard for me to want to go back there.   But, if I stay at CTCA, there aren't many options left.  And, to top everything else off, I found out yesterday that my oncologist at CTCA is leaving next week, and I will have to get to know and trust a new med-onc.  They put me with the head of medical oncology (who I know is great, but his specialty is not colon cancer), so I am trying to get moved to a different doctor, who's specialty is colon cancer.  We'll see how this works out.

Meantime, I am weaker than I have ever been.  With the exception of my still-swollen legs and feet, my body is nothing but skin and bones.  I am starting to look like your stereotypical "cancer patient".  It freaking sucks. I have to use a shower chair and hand-held shower head to get clean, and even that process exhausts me for the rest of the day. 

I would be remiss if I didn't publicly thank my parents and my husband for, well, everything.  They have taken over everything....laundry, cooking, grocery shopping, Christmas shopping and wrapping, homework and projects, etc.  Mom has been my medical caregiver, taking me to almost all of my drs appts.  Dad has been juggling work, kids pick-up and drop-off, kids drs appts, etc.  Levi has gone above and beyond "in sickness and in health" and has been my everything over Christmas break and ohr anniversary.

So, I guess what I wanted to let you all know is how precarious things have gotten.  My brother Greg and his fiancé aren't planning for the big wedding until 2016, but they are planning to come down here soon to get a marriage licence and get married, so I can be in the wedding.  Isn't that awful,  but sweet?  I was very much against it at first, just on principal, but when I started thinking about it realistically, it makes more sense.

Let me say that emotionally, I am feeling better than I did earlier this week.  This has been the hardest thing I have ever gone through.  It's literally been one crisis after another, and I haven't even begun to get my head around what's happened.  And there is still more coming down the pike.  We are now month to month on our lease, and we are on a daily search for a rental closer to the kids' school, so they can walk or bike to/from if/when I am sick or gone. 

*sigh*  There is so much to do, and I can't do a damned bit of it, yet, or without help. The house needs to be packed and pared down (as you do when you move), I need to get the office cleaned out and organized enough that Levi can find things and we can start transitioning bills, etc. to him.  I have some small projects for the kids for when I am gone that I need to work on and complete. 

So, what did I miss?  Other than that, for the most part, my sense of self and humor are still in tact.  They/I took quite a hit, as you can imagine.  Again, this is without a doubt, the hardest time of my life.  I know what's coming, just not when.  And that's hard. 

Comments:

Layal said...

Hello Michelle,I came across your blog couple of years ago when my dad was diagnosed with colon cancer and I was researching the topic;I was touched by your story and started reading all your posts, I admire your courage and I always pray for you.I am from Lebanon,and we have a Saint called Charbel, he is our mediator and he never lets down those who turn to him in difficult times,as he did with my dad,and as I am confident he will with you.I attached the website and facebook page links for you to know more about him. Keep your faith, strength, and high hopes and I'm sure you'll beat that stupid cancer and get back to your healthy life.
http://www.saintcharbel-annaya.com/home.php?lgid=0
https://www.facebook.com/pages/Saint-Charbel/67281717164

January 10, 2015 at 2:52 AM

 Joan B said...

Thank you so much for taking the time to post. I have no magic here, just warm thoughts for you and your family. hugs

January 10, 2015 at 5:31 AM

 Joan Bardee said...

when you can, please check your email.

January 10, 2015 at 9:26 AM

 Thandi said...

So sorry about how hard things have become. Grateful that you have lots of backup.

January 11, 2015 at 4:34 AM

 Michael Williams said...

I'm so sorry for the pain that has been happening to you. I think you deserve a doctor that's best for you. I think you need to be in the best care right now and you need to find the doctor you think is going to help you the most. Hang in there and stay strong through the pain. http://www.pilipshencolonandrectal.com

January 12, 2015 at 5:17 PM

 Rick Ealno said...

Oh I am deeply touched by your story.. my thoughts are with you and your family.. http://colorectal-surgeon.com.au/

January 21, 2015 at 2:30 AM

 Juanignacio Porras said...

Hello Michelle. I am following you since april 2012. Then I had just had a recurrence in my liver of my colon cancer. This happened because of the radiologist Dra Nerea Alava, did not see this meta, THREE!!! months before. Her big mistake led to an incomplete extirpation of lesion and after appearance of new mets on liver, several surgeries and chemotherapies. Now my cancer has widely spread (lungs, lymph nodes, cava vein) but I will continue fighting for me, for my wife, and specially for my son four years old.
I am so sorry everything you are going through. Always I admire your strength and your encouragement. I think you will have a good clinical trial. My mood is not optimal and reflects the last two sentences of your writing. I hope you keep writing and I reading you many years
Best wishes
Juan-Ignacio Porras. Salamanca. SPAIN

January 26, 2015 at 11:24 AM

OCTOBER 21, 2014

Update

Disclaimer - I am super tired and still very overwhelmed by everything that has happened in the past few weeks.  So, if I don't make sense, seem to ramble, or just go off-topic, be gentle with me.  I'm kind of fragile right now.
******************************

As you can imagine, the past few weeks have been just hell for me; trying to process everything has exhausted me mentally, physically, spiritually....really, it took me down for a good two weeks.

Because, after I got all the news that my CEA is up and my tumors have grown....yeah....that Thursday, I was diagnosed with lymphadema in my lower extremities.  The swelling that I have been having for the past two months appears to be caused by those two rogue lymph nodes that I may have mentioned in the last post.  They showed up on the CT scan as enlarged, and appear to be the reason I am having this swelling.

Unfortunately, I went into the appt on that Thursday with no expectation whatsoever that I might be diagnosed with lymphadema, and the poor girl who walked me through everything....well, I was her first patient to diagnose.  Ever.  She had just returned from lymphadema certification that Tuesday.  And, here I am, in her office, crying my eyes out because not only do I find out that my chemo isn't working, my tumors are growing and my CEA is up, but now you are also going to tell me that I have this thing that I am going to have to deal with for the rest of my life, and if I don't do therapy 5 times a week for 2 hours each day, I could end up with elephantitis?  Yeah - I wasn't in a good place.

I recovered from that, though, and I have been doing the therapy as instructed.  I usually get between 3 and 4 therapy sessions in a week, just because 5 seems almost impossible, with everything I have to do around it.  Matter of fact, the only reason I am home today and able to send this in is because I cancelled my appt today; I so needed a break.  Just, to not be down at CTCA for a day.  I love that place, but when I have to be there every single day, it gets completely overwhelming.

So, yeah.  That's been quite the thing.  I won't go into the nitty-gritty; I should, but I just don't feel like it.  The first day of therapy included massage and then wrapping my leg in a layer of gauze, foam., then 8 (I think) ace bandages, keeping a very tight compression on my leg.  There also was no way for me to walk out the door, because they had no footwear to place over the 3/4" of bandages that were on my feet.  It was quite the debacle.

But, I won't dwell on that.  That was 2 weeks ago, and the issues that I faced (that almost broke me) have been addressed and resolved.  Suffice it to say that, where CTCA failed me in some ways, they stepped up in other ways that more than made up for the hiccups.

What else?  Oh - Levi and I went to T-Gen this past Friday to talk about clinical trials with Dr. B.  (I won't spell his name out, partially because I don't remember how to, and partially to keep his identity at bay...)  I'll be honest, we didn't walk in there with the highest of hopes.  Our last appointment there was less than stellar, so we weren't super excited about being there.  I am happy to say that Dr. B. was amazing, took time with us to answer any and all questions that we had, and talked with us about the options available to me.  There are three - one has already had one round of testing, but I will know this week if I will be able to join in the second round of trial.  There is one more that I should hear back about this week, to see if there is availability.

Basically, as I understand it, the trials T-Gen is doing right now are phase one, meaning the drugs they have chosen to test (they are very picky about what they choose) have shown to be effective in the lab and in animal testing, so now they are starting with human trials, first trying to find the maximum tolerable dose, while trying to get some data on side effects and efficacy.  This is what I will hopefully be taking part in.

I'll be honest - I wasn't even going to do anything until after the first of the year.  However, Dr. B. mentioned several times (without knowing what I had decided) that he would rather get me on a drug trial sooner than later, to make sure that the cancer doesn't go out of control.  I wasn't too sure about this, but Levi piped in that he agreed, and that was enough for me.  So, as it stands, I am waiting to hear back from them regarding what clinical trial I might be able to take part in.

The bad news about T-Gen is that they are 45 minutes away with no traffic, and they require me to be there for a certain number of days per month per cycle, and that is going to be tough, esp. with Levi working out of town every week right now.  But, we will work it out.  The longest day is 12 hours there, and the rest seem to be short enough that I can work them in around school drop-off and pick-up, but it's definitely going to put a damper on my lymphadema therapy, so I am not sure how it's all going to work out right now.

Oh!  By the way (see, here's the topic jumping taking place...), the lymphadema therapy is working.  After some discussion, it was mutually agreed that the wrapping that initially took place wouldn't fit into my life, nor did it accommodate for my back pain (matter of fact, it kicked it up something WICKED!).  Instead, I am wearing compression thigh-highs (well, crotch-high's, since they reach all the way up to the tippy-top of my legs), but crotch-high's really doesn't sound as sexy as thigh-highs.  Anyway, I digress.  The therapy is working, and my swelling is down considerably.  Woohoo!

So, lymphadema, T-Gen....what else was I going to tell you about?  Oh!  I was asked to take part in a fundraising effort for Arizona Assistance in Healthcare (they provide grants to cancer patients undergoing treatment to help with non-medical expenses, like gas, food, rent. etc.), which is called Project Pink.  The event is meant to support women with cancer, and is being done in conjunction with a vintage fashion show, put on by Robert Black (his agency is Ford|Robert Black....very schwanky!).  I get to wear a vintage-y dress (we tried to get me to fit into an actual vintage dress, but the woman back then were much slimmer and less broad in the shoulders), and the morning of the event, the fine folks at the Red Door Spa at The Wigwam (a resort here in the west valley of Phoenix) will be doing my hair and make-up.  Fun part is that they have asked to have Julia come with, so she gets to take part in the fun day of getting all dolled up. Matter of fact, right now, I am trying to figure out how to get enough time pulled together to go to the store and find her a dress!  But, I suppose there are worse problems to have.  Since I am the honorary chair of this event, I get to speak in front of the attendees and put a face to the foundation, asking them to put more of their money into the pot, so to speak.  It's going to be a wonderful event, a mid-day luncheon with a fashion show and lots of networking.  And, I get to get all dolled up, which isn't a bad thing.  I'm just hoping I can get my pain under control enough to wear heals!  LOL!

Okay - I think that's enough for now.  I feel like my brain is going to explode.  On top of everything else, I have been officially terminated from Honeywell, because I went beyond their allowable 18 months for disability.  Because of that, I am dealing with all of the transfers required, including health insurance (which I can't get a solid, single answer on), life insurance policies, etc.  It's such a pain in the ass, and just more that I need to try to get a handle on.

*sigh*  I know it will get better, eventually.  But, right now?  I am just tired.  Tired and in pain.  And overwhelmed.

But, I will get through it.  I always do.  Meantime. I'll update when I know more.

Comments:

 steffy said...

hang in there -- sending healing vibes.

October 22, 2014 at 4:06 PM

 Laura Loe said...

I know it is expensive but Cobra should be an option for 18 months as far as insurance goes. I went through the same thing, job, then no job, Cobra and then end of Cobra while going through treatment. It truly is the last thing you need to worry about, isn't it? Too bad you weren't able to go back briefly just to reset that date. I am praying for you hon I wish I could take the load off your back...you have so much to live for and I know that someway, somehow you WILL get to live that life!! Now rest! Love to you and the family..... Laura Loe

October 22, 2014 at 8:10 PM

 Joan B said...

I am so sorry to read how difficult things are. My thoughts are with you.

October 23, 2014 at 1:57 AM

 FalafalFever said...

When is the Assistance in Healthcare event? I went to the website and found only info on 2013 events. I'm local so would like to attend and know several others who would also like to attend or be involved.

October 30, 2014 at 4:00 PM

 FalafalFever said...

Oh shoot, nevermind. I see it was yesterday.

October 30, 2014 at 4:01 PM

 Joan B said...

thinking of you and your family

November 22, 2014 at 9:33 PM

 Cindy Wiebe said...

I am stage 3B. I found your blog when I was first diagnosed in February of 2013. It has been very helpful. I check regularly for updates. I am thinking of you.

December 22, 2014 at 11:17 AM

 Christy said...

Thinking of you and your family. Merry Christmas and Happy Holidays!

December 22, 2014 at 1:36 PM

OCTOBER 1, 2014

CT Scan Results and....yeah....

Well, my hopes for keeping up on this blog were far-fetched, but things will be picking up in the next few weeks/months, more out of necessity than anything else.  And, here's why.

I had a routine CT scan this week, Monday, to be exact.  I also had blood drawn, to pull (among other things) a CEA check.  I have been avoiding this like the plague.  I just didn't want to know - I think that, in my heart, I already knew what was going on.

Anyways, results for the CEA showed that it went from 19.7 back in July to 29.4 on Monday.  *sigh*  I am grateful to my friend Tara (my #wcw) for standing beside me (holding me up, truth be told) as I looked at the results, because I was shaking and nervous and a blubbering fool.  She held me up when I needed it, cried with me as we realized what the results were, and helped me process the information so that I could take the next steps.

On Tuesday, Mom and I went to the doctor's appointment, prepared for bad news.  And, I won't lie - it wasn't pretty.  However, it wasn't as bad as it could have been (and there pops up Sunny-Side-Up-Michelle, finding the silver lining in everything....).

Results highlights - my lung tumors have increased slightly in size, i.e. 1-2mm, but there aren't any more of them.  The tumor in my abdomen on my left side has grown slightly, as well.  Something new popped up this time, which my doctor referred to as *interesting*, which I wasn't impressed with - there are three new enlarged lymph nodes showing up, one in my chest and two in my pelvis.  They are capturing the cancer, which is good, except that they are capturing the cancer, which is, well, bad.  Other than that, things looked, well - okay.

So, what's next?  Because the current Xeloda/Erbitux regiment isn't working any longer, I am now off of that.  And, we are looking at some scary (to me) options.

First is always the one last remaining FDA approved drug, called Regorafenib.  It's a drug that works to stabilize existing tumors, but has a plethora of side effects.  We would start this out slowly, and work my way up, based on how well I tolerate the drug and what side effects pop up.  We are still trying to keep this in our proverbial back pocket, so on to what else we are looking at.

There is a new drug that has gone through phase 3 clinical trials and is on it's way through the FDA for final approval, called TAS102 (I don't know what the official drug name will be).  The clinical trials on this one appear to be very promising, according to Dr. K., and he is working on a way to get me this medication through a system called compassionate care, which means that patients who qualify to get this drug have an opportunity to, prior to the official FDA approval, which can take months or years.  Basically, they know this works, and they know the group that it could work on - this gives those patients (i,e,, me) an opportunity to receive the medication before it becomes commercially available.  Dr. K. seemed to have high hopes for this one.

There is a phase 1 clinical trial (meaning it's first test on humans) at T-Gen (they are local) called a WNT Inhibitor.  I just did a quick google search for this and became completely and utterly overwhelmed with the very complex medical terminology.  What I do know is that this is showing, in Dr. K's words, rather impressive results for a phase 1 trial, so I am working with T-Gen (they are based on Scottsdale, about 45 minutes away) to set up an appointment to get more information about this.

Because we are at proverbial end of the road for treatments, I am going to start on a serious research mission, with the help of family and friends.  I am going to look into getting a second and possibly third opinions on my case; I don't know exactly where yet - that is part of the research.  But, among the possibilities are Mayo-Rochester, Dana Farber, and Johns Hopkins.  There is also a facility in Nashville, TN, called Sarah Cannon Research Institute - they are one of the largest research foundations, focused on clinical trials.  There are also some alternative therapies that look very promising (based on medical research, decades of effective use, and statistics showing very optimistic results).  As I get more information on those, and feel comfortable sharing, I will let you know.

Meantime, there is a lot to think about.

I am currently off of chemotherapy, which is kind of scary.  If I choose to do a CT (clinical trial), I have to undergo a washout period, meaning no chemo, which usually is 4-6 weeks.  If you look at a calendar, that takes me to just before Thanksgiving.  I am seriously considering not starting any new treatment until after the first of the year, which is a very scary thought, but here's my reasoning.

Traditional chemo isn't working.  My lifelines are becoming very few and far between, and while there may still be some options on the table, truth is that my life is going to be significantly shorter than my peers.  I haven't asked for a prognosis - I don't want to have a guesstimate of how much time I have left.  No one really knows.  I *do* know that it isn't the decades that I would like, so I have to learn to live with that.

If, and I do mean IF, this is my last holiday season/Christmas with my family. I don't want to do it while fighting off side effects from a new drug or concoction.  I want to feel good during the next few months, and I want to make this holiday season one that we will always remember.  I have already started by decorating the house with some fun Halloween stuff, including a very fancy-schmancy fall-themed wreath that now hangs proudly on our front door.

I have started working on the kids Halloween costumes - I usually leave this up to the stores, and simply purchase an off-the-shelf packaged deal.  This year, Julia wants to be a weeping angel, a scary character from Dr. Who.  So, I went to Goodwill, found some fixings for the costume, and in the next few weeks, we will be practicing with makeup to make her as scary as she wants to be.  Kevin doesn't know it yet, but his costume (Pikachu, a character from Pokemon, in case you were wondering...) is already purchased and hiding in our closet.  Last year, I was in the hospital for Halloween - this year, I am very much looking forward to dressing up in a sassy (maybe sexy?) little costume for our friends' annual Halloween fiesta, taking the kids trick-or-treating, and enjoying the hell out of ouor beautiful weather this time of year.

I want to make this year special; I know, they are all special.  But this year, I am even that much more aware of just how damned special these memories are, and I want to do everything in my power to make this the best year yet.

So. treatment may just have to wait.

How am I doing, emotionally, with all this?  Hmmmm....I have a few different viewpoints on that.  I am scared, more scared than I have ever been in my entire life.  I am looking at dying - maybe not today or next month or next year, but sooner that I freaking want to.  And, I don't know what that's going to look like.  Will my lung tumors grow so I can't breathe?  Will the cancer just take over my body so I wither away to nothing, some shapeless shadow of my former self, waiting for the end?  That's fucking scary - I don't care who you are.  Even if you believe in an afterlife (which I do), and even if you believe in heaven, the very thought of dying - how you get to that point, and how it all ends - is one of the scariest things I have ever imagined.

So I often choose not to think about it.

I am angry.  This isn't fair.  I don't care what I did in a previous life - this isn't fair, on any level.  I want so badly to lash out at something, some physical thing.  I want to hurt it the way it's hurt me.  I want to make it suffer the way I have had to, the way my kids and my husband and my parents and my family and my friends have had to.  I want to make it hurt, so badly that it wants to die, then make it suffer some more.  The anger is awful - it's primal, and it would completely overtake everything, if I let it.

So I don't.  I can't waste energy on that, when there's no way to fulfill it.  So, I ignore it.

I am sad.  The thought of leaving my kids and my husband is just awful, horrible....there aren't words to describe it.  The thought of leaving my husband to raise our babies is just.....I don't know.  I don't doubt his ability to do it - that's not the case.  It's just - he shouldn't have to.  I am too damned selfish, and I want more time with my kids and my husband.  I want more time with my family - my parents, my brothers and their families.  Back to my kids - I don't want them to grow up without me.  There are things I want to say to them, things I want to teach them and things I want to see them experience.  I don't think I will be here for some of those things, and that tears my heart into millions of tiny sharp shreds, each scratching holes on my soul.

So, I try not to think about it, too much.

I have so many viewpoints on this - it's like different versions of myself, all vying for time and attention.  Some, I give time to.  I have to - I think it's only healthy to think about the reasons I want to live, like wanting to see my kids hit the next milestone.  Some, like the anger, I can't even acknowledge for more than a moment.  It becomes all consuming, and that isn't healthy.

I don't think this has all sunk in yet.  I did have a good cry on Monday, after I saw the CEA results.  I also think that, in my heart, I already knew, which was why I didn't even want to look.  I just wanted to prolong the ignorant bubble I have been living in - I even delayed doing a CEA check a month ago, specifically because I just didn't want to know.

But, now I do.  So, what do I do with it.

I don't quite know yet.  Well, I do, in a broad sense.  I have some research I have to do - some that I need to do myself, and some that I will be delegating out.  I have already started that process - the delegating, not the research.  I think I am ignoring it for now - there are so many other things that needed to get done. You know, life things.  Scheduling the kids dentist appointments.  Taking Julia to urgent care in half an hour, because the cold she has is taking hold and won't let go.  Trying to find Kevin's homework because he "forgot it" again.

Life keeps happening, and I need to live it.  I think that's how I'm handling this.  Regardless of what happens with or to me. life HAS to go on.  It's messy and inconvenient, but it goes on.  So, I need to schedule the research, the meetings, the appointments, the thinking, the worrying, the planning - all needs to be scheduled around life.

And isn't that a wonderful thing?  I am trying to relish this life - I don't know how long I will live it.  How long I will have to feel this good, and to really enjoy the wonderfulness of the simple things, like sitting at my laptop, purring kitten on my lap, sleeping puppy by my feet.  I don't know how long I will be able to tuck my kids into bed at night, and tell them 100 times, over and over, that I love them.  I don't know how long I will have to laugh with my husband, to grab his hand as he walks by, to wrap my arms around him and hug him as tight as I can.  I just don't know.

So, I keep living life.  The research, the fact-finding, the decision making will all come in time.  But today is busy, and tomorrow isn't looking any better.

I don't have to make a decision today or tomorrow.  That day is coming soon enough.  Until then, I am going to keep living life.  That's how I am dealing with this.  It's probably not healthy, ignoring the emotions like I am.  For now, it's working for me.  Today, I love my little bubble.  It's a warm place, full of messy life.

And, with that, I am off to take Jules to Urgent Care, then to pick Kevin up, get dinner, come home to my clean house (thanks to three amazing ladies from CTCA who came over last night and did an amazing, AMAZING job!!!), and fall asleep in my bed, wishing my husband were here with me.  I think he comes home tomorrow night - maybe I'll make him a cake.  He likes chocolate, with pudding.

I think that is a good plan for dealing with the shit that cancer has thrown at me.  I will bake a cake.

Fuck you, cancer.  You may be trying, but I'm still living.  So, fuck you - you aren't welcome here, and I am not going to stop my life for you.  I've got too much living left to do.

Comments:

Joan B said...

Thanks for taking the time to let us know how you are doing. you have your eye on what is important. Whatever works for you is the right thing. So many choices. ARGHH Hugs!!!

October 1, 2014 at 5:13 PM

 Jody said...

What an amazing and courageous post. We met at CTCA's blogger conference and I have followed you ever since. There is no doubt to me that you will find your way through this in the way that is unique fits your needs and wishes.

None of us, doctors, tumor markers or scans, can dictate an expiration date. We go on are you are, living. Thinking through the difficult decisions. Crying when necessary but always, always living now.

All good wishes,
Jody

October 1, 2014 at 5:25 PM

 Kristi H said...

Fuck cancer and bake a cake!!! That's what I'd do, too honey. You have shown your strength over and over again in years prior to this, so don't apologize for wanting to be in your happy little bubble. It's your bubble, and it can be for what ever you need it for.

The clinical trials sound hopeful *smile* I'll be anxiously waiting to see how they work for you! Good Luck!

I think everything you said makes perfect sense and I'm so proud of you for posting it. Writing is cathartic, and it will help you find clarity in your mind when you are overwhelmed with thoughts.

I would do the same thing you are doing... Enjoy the holidays, Have fun, Eat Halloween candy and Thanksgiving turkey until you think you're going to explode! You do what your heart tells you to do.

Big Love as Always my friend,
Kristi

October 1, 2014 at 5:55 PM

 CCW said...

Fuck cancer.

October 1, 2014 at 7:00 PM

 Kidney Girl said...

Michelle, you are handling your illness with so much grace. Difficult times are ahead, but let your doctors, friends and family lift you up and take care of the tough stuff. I wish I was close, because I'd be there every day! Keep fighting, missy! Love you! - Tammy

October 1, 2014 at 8:46 PM

 Michelle Martinez said...

I continue to be amazed at how much strength and courage you have shown! I think it's great that you are choosing to spend time with your family and concentrate on the day to day things that many of us take for granted. Praying for your continued strength in days to come and that you will have the support you need from friends and family to deal with the many emotions you are feeling. And I am especially praying that one of the trial medications will work so well for you that even the doctors will be amazed! Sending love and hugs! Keep up the fight. You are an inspiration! - Michelle Martinez

October 2, 2014 at 7:30 AM

 Jaime Walker said...

Michelle - I honestly have no words. You are full of more courage and strength than anyone I know. I admire you. I am among the many people that you have inspired. Because of you I try every single day to be a better person, a better Mother, to take it all in and stop for a minute to see all the beauty around me. Because of you I have slowed down, tremendously. On the days that I am feeling bad for myself because of the every day BS that I am lucky enough to have, you are the person that gives me the swift kick in the ass that I need to suck it up and be grateful. I am so very happy I got to see and chat with you, however brief it was, at the reunion this summer.
Right now I am just so very angry for you, sad for you. None of this is fair. You are so young. You have been through so much. I suppose there are some things that we never can or will understand. I think what you are doing is exactly what you are supposed to do, and more importantly what you NEED to do. Love your children and those every day moments, cherish every precious moment with your husband, live your life! And when you are ready to face all the other stuff, you will. I am sending you so much love, hugs, good juju, well wishes and everything else I have in me. Through it all you have so many of us pulling for you, your army is cheering you and your amazing self through all of this. And I proudly stand with you and say: FUCK CANCER!

Jaime (Simpson) Walker

October 2, 2014 at 10:32 AM

 Barb Hofmann said...

Michelle - I feel your pain and sympathize with what you are feeling. Cancer sucks! I am in a similar situation with Xeloda no longer working to fight my Stage IV colong cancer with liver metastasis. In August, my chemo stopped working and my CEA's have tripled...I opted not to take the Erbitux and have now been off of chemo since early June. My options are few at this point, too, but I have researched clinical trials and interventional radiology (ablation and radioactive spheres) which are fairly new (but I am not sure what other organs they are used on besides the liver).

I think you are doing the right thing, researching options, asking for second opinions, and Living your Life to the Fullest as best you can! I wish the very best for you and your family! 

October 16, 2014 at 6:39 PM

 awarebear said...

FUCK cancer! I don't capitalize cancer cause the bitch don't deserve that much respect!
AMAZING POST, YOU ARE AN AMAZING LADY!!!!
I really get the anger thing, even though I am recovering, I'm still not back to Normal. Docs say will take another 6 months to a year. I'm pissed that my throat is always a mess (orapharyngeal), my fingers don't work as well as they should, the neuropathies causing the inside of my calves to be NUMB all the time, and on and on.
I did have a good PET scan last week. No tests for 6 months or more. Pretty emotional day that was!
Needed some dirt therapy (container gardening) after the phone call from the doc. I've tried to compartmentalize my emotions because like you said, it's all about energy stealing.
My thoughts and prayers are with you! Stay strong and beat that soul sucking cancerfuck.

I care,

Glen

October 21, 2014 at 8:29 PM