Sunday, March 8, 2015

Legacies

Legacies

Friday, February 28th 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

Friday, January 9, 2015

JANUARY 9, 2015


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 fiancĂ© 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
Blogger 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
Blogger Joan Bardee said...
when you can, please check your email.
January 10, 2015 at 9:26 AM
Blogger Thandi said...
So sorry about how hard things have become. Grateful that you have lots of backup.
January 11, 2015 at 4:34 AM
Blogger 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
Blogger 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
Blogger 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