Happy Mother's Day (2015)

Case here - in honor of Mother's Day, I thought I'd share what I wrote last year but left unpublished.

Here we are at Mother’s Day, a month after Wanda’s passing. Life has seemingly returned to normal - a new normal with a large absence. Sophie and I live far away, so we didn’t feel the physical & tactile presence of Wanda every day, but we felt her energy. We talked on the phone most days and FaceTime’d once, maybe twice a week. I’d send her pictures of our son. We were very close. I could go on about how the last days with her were or how the past month has been, but there’s one thing that has struck me about the whole thing, and that is the power of shared experiences and the power of togetherness and friendships.

It’s easy to look at losing a mom from a selfish point of view - the point of view where no one in the world has experienced such a loss as you just experienced. For me, it’s very easy to think that way because my mom and I were very close - like best friends. However, by listening to those around me I have come to accept that you really can’t quantify loss. I’ve heard grown men in their 60s tell me about how they still have moments of thinking “I should ask mother about this.” I had another friend take me aside when I got back to Israel and tell me about his own experience of losing his mother - about the pleasant dreams with her in them, about the sadness his siblings have felt, and about the general suckiness of the whole situation. The feeling that I’m not alone in the feeling of sadness has served as a comfort to me and, in some strange way, has made me feel more connected to the greater world around me - like it’s reminded that I am a cog in the human condition.

When Wanda had her stem cell transplant, I was able to take about 2 months off of work. She needed someone to be there for about 100 days after the transplant and the clinic told us that it was best if that could be a single person. Between myself, my dad, and my sisters, we couldn’t string together that many days of consecutive coverage, so we did the best we could and called on a few friends to spend a week with her. I think Wanda had two reasons to hate this. The first is that she was worried that something terrible would happen and her friends would be in a position to make life or death decisions for her, and who wants to do that? The second reason was just that she wanted things to be different. She wanted her kids to live closer. She wanted her husband to be able to keep track of everything and be able to just take 3-4 months off of work. Eventually, she gave in and accepted the graciousness of the friends and I don’t think she ever looked back. This last time around, she still disliked having to depend on other people to take her around, but from all that I know of what she told me on the phone, she didn't really dislike it, she just felt that she had to say that she disliked it. You know, like when you have friends over and you feel the need to say "sorry the house is a wreck" even though you just spent an hour cleaning it, it's spotless, and your friends actually live in a barn. In her last year, she embraced and cherished the alone time she got with so many of her long-time friends. Thank you all.

Happy Mother's Day!

Going Home

Our sweet, funny, smart, loyal and loving Wanda left us on Friday, April 10. All Thursday she was itching to get home, restless in the hospital bed. Once we started to make the move, and we assured her that she'd make it home, she seemed for the first time to truly rest. 

Once home, she acknowledged being here and waited patiently until her body was finally ready to let her go. We are so grateful to have gotten her home and to have had that special time with her in the house my parents built 35 years ago. 

Thank you for loving and supporting our mother and wife through the past four years. This is one of our favorite pictures of her, taken when she was very much alive and very happy to be outside hiking with her friends.  Below that is the obituary that will run in the Chattanooga Times-Free Press tomorrow. 

Wanda Leigh Taintor, 65, of Signal Mountain, passed away on Friday, April 10, at home surrounded by family. A longtime Signal Mountain resident, former Bright School teacher and lover of all things fun, Wanda leaves behind a loving husband, Pat, and three children, Kit, Callie and Case, and their spouses, Demian, Mike and Sophie, and two grandchildren, Davis and Patrick, along with another grandbaby due in June. Wanda joins her parents, Curtis and Louise Spicer, and her brother Eddy, as well as friends who went before her, in heaven, where she is surely already the life of the after party. To all who knew her, Wanda will be remembered as a “wandrful” and thoughtful person, who always took time to cultivate friendships and was generous and loyal to family and friends. Born in Virginia, Wanda attended Longwood College, graduating in 1971, before marrying Pat and moving to Tennessee, first to Nashville and then to Signal Mountain in 1974. In 2007, Wanda received her Masters in Education from the University of Connecticut. (At the time, one of her friends remarked, “why do you need a Masters? For your obituary?” Wanda got a kick out of that and would laugh to see it mentioned here.) No one loved living more than Wanda. She was the friend, wife and mother you’d call to laugh with, cry with, travel with, drink wine with, sew with, and smile with. If we all lived like Wanda, we would live fiercely, travel widely, laugh often, smile broadly, give hugs freely, and love friends like family. Wanda will be remembered at St Timothy’s on Signal Mountain on Monday, April 13 with a visitation at 3 pm, service at 4 pm, and a celebration of life to follow. In lieu of flowers, the family requests donations in her name to St Timothy’s, a church community where she worshipped and raised her family. The family would also like to take this opportunity to thank her many friends who have helped through this journey; we are truly, truly grateful.

Now the Green Blade Riseth

After a pretty dim January and February, we were all hoping for a more positive March and April. The highlight so far was one good week in early March, and unfortunately now we're back to what Mom called the "dark ages" in a blog post she never published.

Over the past week or two, Mom has taken a turn for the worse, culminating in a trip to the ER this weekend. There are a bunch of things going on that may or may not be related, all making life pretty miserable outside of the moments of levity and fun with family and friends. (thank you all)

The problems (muscle tightness inhibiting walking, confusion, racing heart, pain) may be related to drugs, or they could just be the leukemia taking over. That is what the doctors are trying to figure out as they work to stabilize her and get medications out of her system. She is currently in the cardiology ICU after a spike in heart rate.

Case is in Chattanooga with dad, and Kit is flying in today. Unless something changes, I'll be heading that way tomorrow evening.

Though of course we hope for some miracle (it is Easter after all), it is seeming like the best outcome may be getting her stabilized and comfortable to send us all home with hospice support. I know she has felt and appreciated all of your love and encouragement along this journey, and I ask for prayers of peace and comfort for Mom at this point.

It is hard to leave her alone in the ICU when visiting hours are over, but I am reminded that she is not truly alone. Please remember her especially in those moments, when she is physically on her own.

We also wanted to share with you one of her favorite hymns, "Now the Green Blade Riseth," which incidentally is one that we sing at St. Timothy's almost every Easter. She says it is her favorite because it was always all of our favorite. She loves singing, and unfortunately for her, we are all pretty terrible at it, though we sang this one fairly well ever since learning it in youth choir.

Now the green blade rises from the buried grain,
Wheat that in the dark earth many years has lain;
Love lives again, that with the dead has been:
Love is come again, like wheat that springs up green.

In the grave they laid Him, Love Whom we had slain,
Thinking that He’d never wake to life again,
Laid in the earth like grain that sleeps unseen:
Love is come again, like wheat that springs up green.

Up He sprang at Easter, like the risen grain,
He that for three days in the grave had lain;
Up from the dead my risen Lord is seen:
Love is come again, like wheat that springs up green.

When our hearts are saddened, grieving or in pain,
By Your touch You call us back to life again;
Fields of our hearts that dead and bare have been:
Love is come again, like wheat that springs up green.

We all listened to this version today (useful because it has subtitles): http://youtu.be/g-5Bi2jM40E

March Madness

Hi there, 

Just a quick update of what's going on over on Signal Mountain. Mom promises she will send out a more personal update soon, so I'll stick to the facts.

The 'chemo light' (aka dacogen) that mom has been on since leaving Vanderbilt last summer has done her pretty well. Her leukemic blasts went down fairly dramatically, though doctors do not expect this regimen to put her into remission. 

For that, she first tried a drug called Ipilimumab, which is a drug that has been wildly successful for some people and some types of cancers. Unfortunately, after two rounds of this drug at a hospital in Atlanta, she was told that it wasn't working for her. 

Her doctors at Vanderbilt had been looking for other options and found one at Sarah Cannon in Nashville. This drug is an inhibitor drug that inhibits the body's production of a protein that cancer cells need to thrive. This protein is one that normal cells do not need. It is therefore less toxic than any type of chemotherapy, but has been shown to halt the proliferation of cancer cells. In some cases, it has killed cancer cells by starving them. We are hopeful that this will work for her.

She just began this regimen this week. It will mean a weekly trip to Nashville for a couple months, then more infrequent trips up there. 

A number of you have been asking about meal delivery. We have re-activated the meal train account to coordinate this should you be interested. Please see instructions below. She could also use companions for the trips to Nashville if anyone is interested in helping out that way!

Thanks again for your support and prayers. 

Callie

To sign up for a meal, follow this link http://www.mealtrain.com?id=mmu8tlctd31t and create an account for MealTrain. (I believe there is also an option to sign in with your Facebook account) Once you create the account or sign in, you will see a list of dates that you can choose from. Click "Book this Date" if there is a day that works for you.

Happy New Year

I hope all of you had a wonderful holiday season. Ours was wonderful. Kit, Demian, Callie, Mike and Davis (plus the added bonus of Mike's terrific dad) were all here for the festivities. We hated that Case, Sophie and Patrick couldn't be here--they spent the holiday with friends in Bulgaria.  Can't feel too sorry for them.
Since we last posted we've had excitement around here. Kit and Demian got married in a small ceremony here on Signal Mountain. It was lovely--the bride and groom make a lovely couple!  That event was closely followed by another 5 days of dacogen.
In November I went to see two doctors; the first one was in Atlanta. I had heard about a research trial from the doctor at Dana Faber in Boston.  He was working on the research with a doctor in Atlanta, and he had suggested I might consider it.  The drug is called ipilumumub (ipi).  It has been used with solid tumors but is in the trial stage for blood cancers. The trial is small and just open to folks who have a relapsed stem cell transplant. The hope is that the drug will urge the donor cells to be more active in fighting my leukemia cells.  Then I went to Vanderbilt to see what they thought. They were encouraging, and I came away thinking that maybe I would have a Donor Lymphocyte Infusion.  This is when they get white cells from the original donor to fight the bad guys. There were two "ifs" to this plan. I had to have at least 20% donor cells and less than 10% blasts (immature cells released by the bone marrow). The blasts were okay. The donor cells were not. I had 86% donor T-cells but only 1% (I did not forget a zero) donor B-cells. No DLI.
I thought those numbers would keep from getting into the ipi trial, but alas, no!  Monday I went to Atlanta to finalize plans to proceed with the trial. I will have to go to Northside once a week, and I will get ipi infusions every 3 weeks for 4 sessions. If it is successful, it will put me in remission and avoid having to make a decision about doing 7-3 induction infusion. I will keep my hair and fingernails!  So send prayers and good wishes that ipi does the trick. Where we go after remission is still under debate. A success story will buy me some good times, hopefully. Love to all. I'm out of room.

Donating Blood

Since this crazy saga began back in April, Wanda (mom) has received countless numbers of blood transfusions both in Nashville as well as in Chattanooga. Well, to be clear, I'm sure it's not that many - it can be counted - but, still - it's a good number. She goes once or twice a week to have a complete blood count (CBC) done and, depending on what her numbers are, the doctors decide to give her either packed red blood cells, platelets, or both. The packed red blood cells boost her hemoglobin, allowing her blood to carry more oxygen throughout her body. The platelets allow her blood to clot when necessary. On the days when she receives a transfusion, she just gets to sit in a chair and pass the time either in a private room or with 3 of her not-so-closest (random) friends.

My cousin Mandi recognized mom's thirst for blood and had a great idea to surprise mom by getting people to donate blood for her 65th birthday. If you are signed up to receive email updates from the blog, you should have received an email about it. Anyway, I'm happy to say that a good number of you donated (blood or cash) and sent pictures and we made a collage of all the pics we could find (sorry if any were left off!). One of mom's friends even made it into the local newscast while donating.

Personally, I hadn't donated blood since college, so I approached the donation with trepidation. However, it turned out to be relatively painless and very quick (less than 25 minutes) and I was left wondering why I hadn't been more giving of my blood in the past. It's satisfying to know that a simple donation of blood can go and keep someone like my mom healthy. So - go, donate!

Wanda's Warriors

All roads lead to . . .

What exciting weeks we have had!  A visit from Callie and Davis, my fun birthday, and then Case, Sophie, and Patrick invaded our lives two weeks ago!  They arrived on September 19 (a chemo week), and I got to go to the hospital from the 23rd-26th. I had a neutropenic fever, a common event with low white cell counts. The silver lining (always on the lookout for one) about that was the doctors gave me lots of antibiotics so that I was able to make the trip to Boston from the 27th-Oct. 1 with no problems. If you wear a mask and act slightly informed, Delta can be really nice to you . . . just saying!
The reason for the trip to Boston was an appointment with Dr. Soiffer at Dana Faber Cancer Center. I was dreading it, expecting more grim news. He could sense that we already knew the grim news, so Dr. Stiffer focused on hopeful news. The bottom line, however, is not what I wanted to hear--that any path to "healing" involves another stem cell transplant or a leukocyte infusion. Either would involve revisiting my original donor. He gave me some reasons why the transplant had relapsed and his ideas to remedy the possibility if I chose a second procedure.
He had several trials that he thought might be helpful in getting me into remission, which is necessary for either procedure.  He was helpful and suggested plans of action, but there are many "ifs" to be dealt with, like
--Will another month or two of Dacogen put me into remission????
--When do I give up on Dacogen and perhaps join a trial group?
--If no lesser remedy works, am I willing to do the 7-3 chemo to get me into remission?
--If I have another stem cell transplant, would I go back to Vandy?  Boston? Atlanta?

Meanwhile, I'm feeling pretty good and looking forward to all the family being here for Kit's wedding October 18. On October 20, the reprieve is over and it's time for another round of dacogen.
Thanks for all the positive thoughts you send our way. We feel them, and we know you're there with us hoping for maybe just a tiny miracle.