A Good Thanksgiving

All in all, it was a good Thanksgiving holiday.  The boys and I went our separate ways on Thanksgiving with Tanner going to Cearra's family, Trevor with his dad and Janet, and me spending the majority of the day with Donna, Hillary, Paul and some of their family, but I think it ended up being a nice day for all of us.

Yesterday, I wasn't sure how the day was going to turn out since I was fighting off one of those "moods" early in the morning but it ended up being a very nice day.  One of the nicest days I've had in a while.  The boys, Cearra, and I all went to Granny Jane and Pop Jerry's house and had lunch.  We spent the afternoon with them talking and laughing, and then last night I got to have mexican food.  There's just something about Thanksgiving and all that turkey and ham.   As soon as the holiday is over, I have this craving for mexican food!  So I'm all good now!!  I've had my turkey and dressing - and my chips and hot sauce!

I don't really know what all was said to Tanner at his doctor's appointment on Thursday.  Dr. Albritten visited with him alone but I do know that she called a counselor while they were in the exam room together and scheduled him an appointment for next Thursday.  The nurse told us he just has "too much to handle on his own" so I guess we'll see how he does with counseling.  He told them he "doesn't like counselors" and they asked him to at least give it a try. 

He's been taking his medicine like he should since the appointment so he's back on track in that regard.  We just need to keep him there!

Love is like a friendship caught on fire. In the beginning a flame, very pretty, often hot and fierce, but still only light and flickering. As love grows older, our hearts mature and our love becomes as coal, deep-burning and unquenchable... Bruce Lee

Parting With Your Illusions

Don't part with your illusions. When they are gone you may still exist, but you have ceased to live...

Mark Twain.

Big Boy Pants

I went with Tanner to his doctor's appointment on Thursday and when Anita (Dr. Albritten's nurse) came in the room she was asking him her regular questions, one of which was how he was doing taking all of his medications.  He glanced over at me and then told her, "Well, I take them when I think about it". 

Her answer was, "Tanner, I already know" and she went on and explained to him that Caremark told them when Dr. Albritten attempted to call in his next round of Revlimid that Tanner had admitted to them that he has a bottle of medications that he still hasn't taken.  She said that Dr. Albritten wasn't there in the office and she was going to talk to one of the other doctors but that she thought it just best that he doesn't try to take any more at this point and they would consider this his week of "rest" and then he could start a fresh new round next week.

She went out of the room and a minute later, Lisa, the "counselor" over the teenagers at Cook's Oncology came into the room and she was just generally talking with him as she always does and then she asked the same question about his medicines.  When he gave her the same answer, she told him she was going to "come down hard on him" and she went on to explain to him about how hard it was going to make things if he relapses, how "tired of his medical stuff" he was going to get if he had to go through the aggressive chemotherapy all over again.  She told him it would be much worse than the first time.

She asked him if he realized what happens if a person gets sick and the doctor prescribes an antibiotic and the patient only takes them every once in a while? She explained that the "illness" learns how to overcome the medication, to become resistant to the medication, and the patient becomes sick all over again.  Sometimes even more ill than they were originally.  She explained to him that the same thing can happen with cancer.  She told him that she realized that he wants to be "normal" and "just like all the other teenagers" but that if he relapses things would be much, much harder on him. 

They told him that they have a program through Cook's where the teenager can get a daily text that reminds them to take their medicines and when he goes to his appointment this next Wednesday morning they are going to set him up to receive the texts - and while we were sitting there, he sat a daily alarm on his phone to also give him another reminder.

He told Lisa and Anita that he was going to do better, that he was going to "put on his big boy pants" and commit to them that he would start taking his medications like they are prescribed and would show up for his weekly appointments.

We are going to get him another one of the weekly pill containers (the one we had broke) and I'm going to help him get organized and we'll leave it on the kitchen counter so that he sees it every time he goes to the refrigerator.

Their dad took Tanner, Cearra, and Trevor down to Clyde on Friday and they all visited with their grandfather.  They fished, shot rifles, and had a great time.  While they were gone, I took the opportunity to paint Tanner's room on Friday night and then Saturday I went down to the lakehouse in Palo Pinto and spent some time with my cousins.  I think Tanner and I both just needed a short break this weekend and this next week we'll regroup and get back to working on getting him back on track with his treatment.

I can't begin to describe how hard it is on me as his mom to handle all of this... I really can only imagine how hard it is on Tanner to live with this disease. 

I wish it had been me, instead of Tanner, who was diagnosed with Multiple Myeloma... but it wasn't... instead it struck my 17 year old son so now he's going to have to "put on his big boy pants" and deal with treatment for the rest of his life.  Hopefully, with treatment, that life can be a long, long time.

Not A Good Day

It's not a good day.

Tanner's girlfriend had a medical procedure yesterday and I knew most likely wouldn't feel like taking him to his doctor's appointment at 10 a.m. this morning so I told him that I would be taking him.  I woke up this morning to find a note under my door telling me that Cearra had decided that she felt like she could drive him and that I could just go on to work because he had his alarm set.

I called him at 9 a.m. and he told me he was up and that Cearra was taking him.  I texted him at 10:20 to ask him if they had made it and he said yes and that it "was crowded".

11:00 a.m. The receptionist called to ask me why Tanner hadn't made it to his appointment!!  We've rescheduled for 8:30 a.m. on Thursday morning and needless to say, I will be taking him myself.

I've called and texted and can't reach him right now but I figure he's asleep.

I'm just so very frustrated!  Quite bluntly, I'm angry!!

This past week while we've been texturing his bedroom and moving things out of the room to make way for all the work being done, I found his last prescription of Revlimid (the med that is prescribed to help extend the remission period) and he hadn't even taken it out of the bag.  It was still sealed and not even opened.

He's been sick to his stomach and experiencing lots of stomach acid.  He's been having deep depressions and mood swings....  But when you get down to it, he's not taking care of himself at all.

He wants to be like all the other 19 year olds.  He doesn't want to take medicine... He wants me to leave him alone.

He has cancer... an incurable form cancer....

I'm in a fragile state right now...  One wrong word at this point and I will be in tears... again...    On my own with a shattered heart looking the dreaded holidays in the face and Tanner has decided to just stop taking care of himself.

How do I address this?

So... He's finally answered my texts, "I just am tired of my medical stuff..."
I've emailed Dr. A that Tanner is struggling. Wanted to give her a head's up so they can address the issues at his appointment Thursday.

Timshel

Broken and shattered and trying to put the pieces back together...

to be stronger on the other side...

This song moves me...

Timshel - Mumford and Son

Cold is the water

It freezes your already cold mind

Already cold, cold, mind

And death is at your doorstep

And it will steal your innocence

But it will not steal your substance

But you are not alone in this

and you are not alone in this

As brothers we will stand and we'll hold your hand

Hold your hand

And you are the mother

The mother of your baby child

The one to whom you gave life

And you have your choices

And these are what make man great

His ladder to the stars

But you are not alone in this

And you are not alone in this

As brothers we will stand and we'll hold your hand

Hold your hand

But I will tell the night

And whisper, "Lose your sight"

But I can't move the mountains for you

The Hebrew word Timshel - 'thou mayest'

we have a choice... for if we 'mayest' so too then we 'mayest not'

triumph over "sin"... "ignorance"...

Choices... every day...

MMRF Gala

Everytime I stop and read publications dealing with Multiple Myeloma, I become frightenend all over again.  I survive each day by believing that Tanner is going to be one of those in the small minority of MM patients who are going to beat the odds of the five year life expectancy.  I have to believe that he's going to have a chance to live many years... to experience LIFE...

I urge him all the time, to live life to the fullest.  To live with joy, abandon, and love... to put the negativity and darkness aside and just try to relish every moment... 

About Multiple Myeloma
Multiple myeloma is an incurable blood cancer. The five-year relative survival rate for multiple myeloma is approximately 38 percent, one of the lowest of all cancers. In 2011, more than 20,000 adults in the United States will be diagnosed with multiple myeloma and nearly 11,000 people are predicted to die from the disease.
About the Multiple Myeloma Research Foundation (MMRF)
The Multiple Myeloma Research Foundation (MMRF) was established in 1998 as a 501(c)(3) non-profit organization by twin sisters Karen Andrews and Kathy Giusti, soon after Kathy's diagnosis with multiple myeloma. The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. As the world's number-one private funder of multiple myeloma research, the MMRF has raised over $170 million since its inception to fund nearly 120 laboratories worldwide, including 70 new compounds and approaches in clinical trials and pre-clinical studies and has facilitated more than 30 clinical trials through its affiliate organization, the Multiple Myeloma Research Consortium (MMRC). As exceptional stewards of its donors' investments, the MMRF consistently surpasses its peers in fiscal responsibility. For more information about the MMRF, please visit www.themmrf.org.

More than 1,000 People Brave Historic Winter Storm to Champion Cancer Research at Multiple Myeloma Research Foundation (MMRF) Fall Gala Raising $2.1 million

Stevie Wonder, Michael McDonald, Darius Rucker and Javier Colon Wow the Crowd with Astounding Musical Collaboration

Norwalk, CT — November 7, 2011

October’s historic snowstorm could not stop the Multiple Myeloma Research Foundation (MMRF) from bringing together over 1,000 supporters, including many myeloma patients and their loved ones, as well as celebrity guests, at its 15^th Annual Fall Gala on Saturday Oct. 29, in Old Greenwich, Connecticut. Despite road closures and power outages, Gala attendees were determined to make it to the event – evidence of their dedication to the mission of the MMRF. The premier benefit raised $2.1 million to support MMRF efforts to develop next-generation treatments for patients with multiple myeloma, an incurable blood cancer, and find a cure.
Music industry legend Stevie Wonder received the MMRF’s Spirit of Hope Award in recognition of his extraordinary humanitarian efforts, philanthropic leadership and generosity of spirit which truly encapsulates the word, “hope.” As an activist, Stevie spearheaded the effort to make Dr. Martin Luther King Jr.’s birthday a national American holiday, and has performed benefit concerts for a vast array of worthy causes. Stevie currently serves as the United Nations Messenger of Peace with a special focus on persons with disabilities. Grammy-Award winning artists Michael McDonald and Darius Rucker and winner of NBC’s “The Voice” Javier Colon wowed attendees with their powerful performances as Featured Artists in a Tribute Concert to Stevie Wonder.
“It is an honor to be recognized by the MMRF – an organization that has helped so many families affected by multiple myeloma,” said Wonder, a close personal friend of MMRF Board of Directors member Michael Reinert who is currently battling multiple myeloma. “Cancer has touched someone in all of our lives. It is my hope that, by continuing to raise awareness and research funds through events like this, we can play a role in helping the MMRF bring patients new treatments that will extend their lives.” Stevie Wonder made the evening especially memorable by joining the event’s Featured Artists to perform several of his classic hits.
As a testament to her commitment to patients and families living with cancer, Deborah Norville, Emmy Award-winning broadcast journalist, New York Times best-selling author and a member of the MMRF Honorary Board of Directors, served as Mistress of Ceremonies for the 10^th year. Dennis Gillings, CBE, Chairman and Chief Executive Officer of Quintiles, was honored with the MMRF Corporate Leadership Award for Quintiles’ leadership and vision in delivering new drugs and cures for the world’s most challenging diseases. Other special guests included MMRF Honorary Board of Directors members Ann Curry, Co-Anchor of NBC’s TODAY show, and Carl Quintanilla, CNBC’s Co-Anchor of “Squawk-Box.”
“Thanks to the amazing generosity of those who have supported the MMRF Fall Gala, we have made incredible progress developing the next generation of lifesaving treatments—providing great hope and changing the outlook for patients fighting this still-fatal disease,” said Kathy Giusti, Founder and CEO of the MMRF and a myeloma patient. “I have been given an amazing gift – a legacy to leave behind, a tribute to the amazing work we have all done together. It started as a pledge to two young children to stay in the fight. It continues as a pledge to help as many patients as we possibly can.”
PepsiCo served as the event’s Presenting Sponsor and the evening’s Leadership Circle was comprised of Paula and Warren Berliner, Celgene Corporation, Karen and Michael Reinert, and Debby and Peter Weinberg. MMRF Fall Gala Vice Chairs were Angelique and James Bell, Richard Bellas, Elizabeth Donald, Kathy and Paul Giusti, Elizabeth and Traver Hutchins, Keno Graphics, Kathleen McCabe and W. Dana LaForge, Lori Marcus, Millennium: The Takeda Oncology Company, Anne and David Ogilvy, Onyx Pharmaceuticals, Chuck Ortner, Anne-Marie and Paul Queally, S.A.C. Capital Advisors, L.P., and Marcie and Miles Stuchin.

The Calm

Well things are fairly quiet and calm right now.

Tanner has seen the Physician's Assistant at his chemo appointment the last couple of weeks and he says that everything is still good with no changes.  I don't know if Dr. Albritton is out of the office or if she's decided she doesn't need to always see Tanner at his weekly appointments since his MM is stable at this time.

We go back to Dallas to see Dr. Berryman the first week in December and after that appointment, they are going to initiate the changes to move him to the adult practice at Texas Oncology on 8th Avenue.

I've actually barely seen Tanner the last several days.  I work all day and when I get home he's at school.  Most any free time he has he spends with Cearra - though yesterday he did work all day with his dad.

My niece, Beth has come to Texas for a weekend wedding and has been staying with me.  It's been wonderful having her home.  She's out visiting friends this morning and I finally got the back yard mowed and am hoping that's it for the winter.

It's been calm for a short while now, but if there's one thing life has taught me, that can change in an instant.  I find myself just waiting for the bottom to fall out again. 

It's not if....  It's more like when...

In the meantime, I'm trying to enjoy each moment, lately, to the fullest.