JEN TUREK

A posting to the Braintmr e-mail list on Wednesday 9 May 2001 by Denise Turek, mother of Jen Turek. Reproduced with permission. Jen died, age 27 years, in 2001, after battling a brain tumour for 12 years. In this posting Denise, her mother, outlines the last few months and days and offers some advice to other families on the e-mail List. Denise's e-mail address is: DGturek@aol.com

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Subject: Jen’s journey

"I am having a difficult time organizing my thoughts but there are several things I would like to share with the families on this list...some specific to Jen, but others not.

I read an email that said Jen’s name was included in the list read in DC...thank you, thank you. We made a special point that the cause of her death was listed in her Death Notice and in the article that appeared in our local paper and suggested two places for contributions, one of which was The Brain Tumor Society in Boston, which helped us so much over these past several years and Jen also volunteered there when she lived in Boston.

I lived so long with the fear that when Jen’s time came, I, we, would not be up to the task...and in the beginning of my journey on this list that would have been true. I was paralyzed with the fear of the unknown. The sharing of information on this list made the difference in how we all made this journey. There is a point that you know even when you continue to fight that you must prepare for the eventual death of the person you love and have fought for so long. Last year, as a family, we reaffirmed a discussion we had in 1994, Jen’s first recurrence after her initial surgery and radiation in 1988-89. We understood that Jen’s time with us would probably be limited by this disease. First, there was a commitment to keep Jen at the most optimum quality of life for as long as we could and second, we decided how we wanted to care for her if and when that changed. We were still new to this process and hung on to the hope that Jen would be one of the survivors. Good surgeries gave her quality time. Eventually the long term side effects of radiation and then successive chemos took their toll, but we were able to do many things in alternative and complementary medicine that minimized the side effects she dealt with and allowed her to push the limits of what she could do for almost 12 years. I wish there were alternatives to the radiation and chemo...but they are a fact of life with this disease and do add quality time to many lives.

We learned that it is very difficult to compare treatments because not only is each tumor and person different, but while there are similarities there are also surprises that cannot be prepared for. Henry Friedman called last week and even the Duke team had no idea how quickly the end time would go for Jen...so the pathology of the low grade was no comfort. We were thankful and appreciative of his call. If you can think things through and prepare for this time before you are in it—do it.

Friends who did not understand the disease process and were encouraging me to get out and do other things did not know or understand how quickly this time would go. My gut instinct said there would be all the time I wanted later and nothing to me was more important than the time we had with Jen. I began in the fall to stock up on certain supplies and things in the house so I would not even have to shop so when the time came that Jen needed someone with her all the time I could do that and the house could still function. I understand this does not work in all circumstances. One of the most difficult things to do was to share the time we had left...but basically from late Feb on we had an open door policy and told people who wanted to see her to keep touch or visit as that window was closing. In the last weeks I was seldom on our first floor but there was constant visiting...although we did prepare and educate the friends and family not to put demands on Jen for conversation she was no longer capable of, but to hold her hand, sit quietly if she dozed off, and talk to her and touch her so she could feel their love.

For us, we could have had hospice probably one to two weeks earlier...but that is looking back, at the time both she and we still wanted to try and we had already gone from the cane to the walker to the wheel chair in less than three weeks. All of us probably realized that the Clinic was accurate when they suggested hospice mid-March...it wasn’t the suggestion...it was everything that was not said. Nothing about future contact with them...what the process would be like, that she could even come off of it if she improved...it was like being dropped off a cliff or dismissed. It hurt and we couldn’t accept it. Duke’s reaction was different...and even when they agreed it was time to call hospice they said they were in contact to be of help if we needed it, and answered the tough questions—like that it was most probable that even stopping the progression of the tumor at that point would not restore Jen’s quality of life and we needed to hear that and understand it to be able to make good decisions for Jen. It was very hard to slow down the momentum of fighting against the progression to accepting it as a reality that was not going to be turned around. Even when our focus became Jen’s comfort and care we struggled with feeling the need to do more. By the time the care becomes around the clock you need to have help and hospice, if that is your choice, in place. Our hospice was wonderful...and all the vendors they dealt with that serviced us we thoughtful and considerate as well. We had no time to think at that point and were on autopilot following the plan we had set out. Each of us had said what was most important to them and we had made a determination as a family what we needed to do to be able to live with ourselves.

From Easter Sunday on Jen was never alone for more than a few moments...especially when we realized that the ability to swallow was going. We touched her, held her, lay next to her and played her favorite music day and night. I learned to bathe her and change her in her bed...her Dad kept her mouth clean and moist and we propped her arms and legs so they never rested on the sheets and used "Udderly Smooth, udder cream" and she never had a bedsore—of course we realize she was not in bed that long—but the one that began to develop ended as fast as it started. Things I had been afraid of were not an issue. We talked to her about everything we were doing whether it was washing her or giving her meds...hospice put her on a catheter and that eliminated all the changing and that made her day much easier. One of our greatest concerns was seizures. As the tumor continued to create pressure she did have a few focal seizures but they were minor and quickly controlled with the valium suppositories. For the huge amount of decadron that Jen was on she did not gain body weight which was a blessing. She continued her very healthy vegetarian diet to the end (with the exception of her very favorite, ham, which we had for her several time the last two months) and while she did get the "chipmunk" cheek effect that was the only indication of the steroids.

One of the most difficult things to see was all the weight she lost in those last nine days without food or water. THE most difficult was the last hour when her breathing became labored and her coloring changed...I wish someone had been more specific in what to expect. Since she had been a long distance runner I can compare it to the look of stress and hard labor we would see as she ran an approached the end of her race...she would pace herself for several laps and then kick it in to make that good time for the finish. She did the same thing in our arms and we told her she had already won her race and to go home...that we were all there with her and we would have each other and be OK...her work was done. And suddenly it was over and immediately her body began to change back to it’s normal color, and she had a peaceful small smile, and our first overwhelming feeling was the relief that it was over for Jen and then the grief for what was beginning for us.

Since Jen actually died at 3PM on a Friday afternoon it took a while for the hospice nurse to get to the house and get the official pronouncement from the dr. It was my wish and choice to bathe and care for Jen’s body which she helped me to complete. She made all the necessary calls, including the funeral home which we had decided on earlier. Then my parents and a brother arrived, and soon other family, and some close friends of Jen and we actually had her with us until 8PM and it gave us each time to be with her because we all realized that once she left our home everything would be different. I realize this does not work for everyone...that’s OK. But if this is what you want, prepare for it and make sure that things are in place so that you can look back on this time and know that you did all the things that were important to you. Everyone in our family knew what we hoped for and had time to get used to it or ask questions before we were at the peak of emotions. My parents who have struggled terribly in their 80’s with the notion of Jen’s death at 27, found this immensely helpful and it gave them great peace. Her aunts and uncles, especially her brothers and us hold that memory of Jen’s peace as a great comfort. It truly diminished the anxiety of the next several days as we finalized the plans for her funeral and waited for the out of town family and friends to arrive until her wake began on the following Tuesday. By that time the personal and private gave way to the public mourning and we had moved to yet another phase.

This is a terrible battle we are engaged in collectively. Even though we have individual losses, each of us, and as families, make a difference. I heard Reagan’s speech on the rangers going up the cliff on D-day the other day...and he said that as one fell, another took his place...and as their ropes were cut, another was thrown up to catch hold...and they just kept coming until they took their objective. Each of us in how we advocate, interact with the medical community, support services, etc. are advancing the expectations for those following and pushing the limits to get the progress. Our sadness in losing Jen will always be a part of our lives, but there is no sadness for Jen’s life or how she pushed the limits to pack in as much as she could. She lived in spite of her tumor and it really had to work hard to get the upper hand. I know that they will unlock the mystery of this someday. I know that others will sadly follow in Jenny’s place, but if we keep throwing out the ropes of information and advocacy and we continue to empower the families who have to deal with this disease we will have a victory even in individual defeat. For Jenny’s courage in the face of acknowledging her coming death and the faith and peace she sought and found, we couldn’t do any less."

Blessings, Denise Turek, Mom to Jen