As written by Jeff Lindley
TOUCH – To put and hand or finger on, to be in contact with, to change or move someone or something.
Sometimes we take what we can feel for granted. Your “touch” can feel a single human hair between your fingers. Your “touch” can sense if someone has a temperature. Your “touch” can feel a heart beating deep inside someone. Your “touch” can make your heart race.
You can swing an arm over and “touch” your spouse in bed and sense if he or she is sleeping well.
Touch can be disrupted by drugs, surgery, death, to name a few. These few Marty and I have felt. Together.
Marty spent part of the past 11 years in an argument with the silent killer, never with God. She refused to accept she could lose. Her denial coupled the doctors and medical advances and a very special someone kept her here in the land of the living, of which she prayed for every day, longer than had she been without all of it. Her best and most reliable asset, that special someone, was Jesus. She never doubted his unfailing grace and mercy on her or anyone else. She was sure of this until she left us Feb. 21st.
During her time here, she endured multiple surgeries, chemotherapies and radiation treatments, all of which left physical scars. Scars destroy your sense of feeling. Drugs make you unperceptive, but not insensitive. Chemotherapies make your body into something unnatural. In Marty’s case, she itched and burned. Touching her in certain places made her itch and hurt more. Add all this up and she was being denied her sense of “touch”, in a way. However, she never lost her spiritual “touch”. Those who knew her are all grateful for this.
I was denied “touch”. She could recall how “touch” feels in certain places, but the feeling had been removed, erased. I could feel scar tissue and knew she couldn’t feel me as before. I heard her last breath, held her hand and touched her as her heart stopped. Her journeys began and ended. I can remember the ”touch” on her neck to feel her heartbeat stop. Her heart was there but she had already left us. In days before, she would grip my hand in response to my touch. She could not feel my last “touch”.
Can you learn something here? Let me help you out, get out there and touch before you can’t anymore. Marty would want you to do this.
Beware of Clot Worms!
(Nobody told us about these things until after we discovered them.)
Forget chronological order. The facts are the facts.
Marty’s journey involved so many procedures – surgeries, chemo’s, labs, travel, standing doctor visits every 3 months or more – the process became part of our lives. She said she did not want this to change or control our lives, but it did. First, scans to identify the bad guys so Levenback or Vouthey or Chang or Levine or Lee or Harris or Hickman or Geldernick or Tschoepe could locate and remove them or freeze or burn them or drug them. Recovery that seemed to get slower and slower as the surgeries continued. (Turned out surgery became the best defense.) There were the “side” surgeries that were because of what chemotherapy does to a body… double cataract surgery to replace foggy lenses, biopsies to see if a tumor is growing somewhere – ankle, back, arm. (I had one, once. Just to keep the playing field level.)
Early days – double mastectomy and re-construction and chemo. We named her new breasts #5 and #6. 1 and 2 were originals, 3 and 4 temporaries. She had drainage tubes under her arms and we were to track the amount of fluid that seeped out. This involved some suction cups and measuring devices. The fluid just doesn’t flow out – it coagulated and had to be sucked out. This is where we discovered clot worms, long strips of clotted blood in the tubes. We never got a real measurement of fluid because we were having some much fun cleaning up where clot worms missed the measuring devices and ended up on the sink, the floor and clothes. The grand finale is when a newbie nurse tried to pull the tubes out and stopped in mid pull. She said “Oh, my.” Marty said “Oh %&*$.”
A biopsy on her ankle seemed straight forward until they cut into her already edemic skin. It was so tight they could not seal it back, just kept sewing and stripping stitches and finally cauterized it. That’s when we found out everybody smells the same when their skin burns. It took 6 months to heal.
Her first skull surgery went well until the wound started growing in size and leaking. A trip to Houston showed MRSA had started to infiltrate her head. A second surgery was needed to remove a mesh plate that seemed to not like its surroundings. That’s when we found out what a bolster was. It’s a wad of cloth that is on the stapled part of her skull where the graft was put on. She needed a skin graft from her hip to go where they had moved her scalp up to cover the hole in her head, where larger staples were. That meant another healing place to watch. Did you know a skin graft is not a piece of thick skin? It’s tissue thickness. When it was time to remove the larger staples, I asked if we could have them to make a bracelet, Dr. Levine was apologetic because it was he who did the first surgery and said “Really?” He likes beer. All other MD’s were bribed with wine. Marty wanted them to remember her. Levine said he doesn’t need to be reminded. All the others probably, too.
The most surgeries Marty had been in her abdomen. In the numerous surgeries, more than half of her liver was removed, 6” of small intestine was removed, several tumors in various areas, and a fancy chemo-embolization was done – injecting chemo directly into tumors in her liver by way of blood vessels. The second abdominal surgery allowed Dr. Vouthey to come in after Dr. Levenback and do the liver. We asked if there is a discount because he didn’t have to make the incision. She was left with a new road map of where her body parts were. Dr. Levenback said the next time he goes in, it will take time just to locate her vital organs. We also found out after the liver surgery that it is one organ that sort of regenerates. She was left with one big left side liver, no more right side. Added bonus, her gallbladder was removed. That’ll teach it to go near a liver with tumor. Since that surgery, I will not dine on liver with onions ever again. The last abdominal surgery she had, we taped a zipper on the scar where he went in last. Don’t know if Levenback smiled, he had a mask on. I’m guessing yes. I always asked him if I could watch, he always said no, even when I reminded him we are paying for it.
Marty needed blood thinning shots on occasion. They go into your belly. I love giving shots – NOT – so I was trained in shotting. Swab the target with alcohol, unsheathe the needle and stick it in all the way. My first attempt we did not notice the needle was bent like a fishing hook. It looked like a scene from “Psycho” as I repeatedly tried to stick her. She did the rest of them herself. Big deal.
Take your pick of chemotherapies; she had 10 different flavors, with various lengths of cycles, including some experimental drugs made from sea squirts and a sea sponges. A couple of them almost killed her. (Not the squirts or sponges, they didn’t do anything.) None of them killed her spirit or the tumors they were aimed at. One was even named AIM. No need to get into details of names, they were all bad. Side effects were – well, think of something and she suffered through it.
We took a trip to Boston, made a vacation of it, and let Marty have her cryo-embolization of a vertebrae. Three needles into the bone and chilled to freeze a tumor. It worked, but only on that tumor. Turns out tumors need to be kind of small to have this done to them. Marty’s other tumors graduated from tadpoles to frogs by then.
One radiation treatment involved molding a mask out of what looked like spaghetti to keep her immobile during the 20-minute zap of another vertebra. One 20-minute zap seemed tolerable enough – Marty woke up after two days of sleeping. It worked, but you can’t do it twice in the same place plus there is that size requirement. And it freezes away bone you probably need.
In the age of Google, we learned a lot of new words. When we tried to use them in a sentence with the MD’s, we sounded like we had been on Google a lot. Marty was always proactive in her treatments and questioned everyone. We often got more than one option – we prayed, researched (Googled), and made the decision. Usually two options, two MD’s. Rarely did any MD say he didn’t like to be second guessed – they were guessing all along. Remember: there is no cure for cancer. Note – if an MD says there is only one way and you don’t need a second opinion, go get another MD or two, or three.
You think this made our marriage stronger? Maybe it did. But I want to tell you – there are better ways to strengthen wedlock. This way really sucked.
I hope Marty’s journey gave some hope to others going into the cancer desert. By process of testing, elimination and revelation will the MD’s win. I believe there will be a time when each individual will be evaluated and treated according to their own DNA, gene pool, family history, etc. It is probably happening as we speak. Dr. Torres, head of Sarcoma Research at MD Anderson, apologized that they didn’t get to that place in time for Marty. But her cancer history is part of a growing research into how to deal with and maybe individualize cancer treatment.
Now I am left with not only a huge void in my life, but also extra time on my hands. I don’t see this as a silver lining, I see it as Marty wants us to move on with our lives. Our car is pining for Houston; I need to get it to therapy. Sheesh.
June 4, 2004 – sitting in Dr. Hickman’s office, we were told Marty has invasive ductile carcinoma. Other words were spoken that day, about treatment and the future, all I remember is on that day I knew what I needed to do – be a caregiver for Marty for the duration. Nobody told us the term would last almost 12 years. The time didn’t matter, I promised to go through life in sickness and health with my wife, that did matter. We also did not know what was in life for us, mostly Marty; I was there to somehow help ease the pain, tend the bandages, pray a lot, make her laugh, listen to her fight, want to run away from home; until this was over. She always believed – always – that she could get treatment and go home cured someday. Her prayer almost always included “cure me completely and leave me in the land of the living.” It had become a fight that seemed like a denial to me.
Whatever it was in her mind, I had a hard time going with her on this denial philosophy. Marty, how can you think that way? Come on…You have cancer that has not lost yet? Accept that and…what? Accepting that doesn’t really do anything, other than reduce your defenses. What purpose would it serve? Make me feel better, yes; show her I’ve come the realization of facts, yes; that’s about it. It would not do any good for Marty to tell her how I feel. None. I never told her that was what I was feeling. At times I told her she had cancer, that’s about it. Frustrating, but that’s the way it worked out.
Research showed in many cases, cancer is not slowing down, and especially true with Marty. After surgeries and chemo for breast cancer, in 2007 she got a new cancer – leiomyosarcoma. Term limit on this one is 5 years. The fight continued. She was not going to allow cancer to beat her. She denied being sick. She said, “I am fine except for cancer.” How can you think you are fine when you have a killer disease? I didn’t understand it for a long time. After every surgery, I figured she would not make it for much longer. After chemo treatments made her miserable, hospitalized and in constant pain, how can you possibly think you will get better? I did not. In reflection, I think God was preparing me for the final days of her life. I went through so many times of “she is going to die now” that when the real death came, it was not a time of overly emotional Jeff, crying over his wife’s body as she took her last breath. It was more like – “You feel better now, don’t you?” Others that have lost spouses probably didn’t get the training I did. Thanks, God.
This is the statistic paragraph: I estimated the time spent caregiving Marty was about 10% of my waking hours during those 12 years. (About 70% of the waking hours thinking about our life together and how it is morphing – good and bad.) I have seen other caregivers spend close to 80% caregiving. In the general realm of caregiving, I had it easy. Final statistic: did you calculate how many years Marty had after the standard 5-year term? 4.
How do you get across the Grand Canyon? You take the first step – accept you have an obligation and purpose and requirement and stay with it. I promise you will never feel guilty if you stand by your charge. You will feel helpless, depressed, mad, frustrated, deflated, sick, tired of the whole crappy deal, maybe like you are not appreciated, left out, totally controlled by a disease – but never guilty of what and why you are doing. And that will carry you past everything else you feel. Do everything you can while you can with everything you have been given and Let go…let God…He has your path lit up. Follow it. Marty is in a place where all the answers to all the questions we did not get answered here, are. She is saying “So THAT’s why that happened that way. WOW. What a great plan you have, sir!”
In the movie “The Magnificent Seven” bad guy Calvera rides into town with his bad boys to take advantage of the poor villagers. The Mag Seven were there with Yul Brenner standing in the way. Yul says “Ride On” with a horizontal slide of his hand showing the bad guys the way out of town. “Ride On?” “Ride ON?” Says Caldera. Yul says yes leave this town – there is nothing here for you anymore. (I paraphrased the last part, maybe.) Then all Hell breaks loose.
Marty left me and left a large void in my life. The other writings hopefully explained how things went for our 12 years in the cancer desert together and with a community of close companions, too many to mention, plus I would probably leave out a few. Now what?
I hope it is human nature to imagine and fantasize about life if you could be placed in another setting. God gave you a brain and the thoughts you have are his. Therefore, I did think and still do, think. I mentioned before in another chapter, one of my thoughts was to run away. At the time, I was really, really close to that. When Marty and I both hit bottom at the same time facing and feeling what she was going through, and, although she said she was fine – she knew deep down things would never be the same. She had to. She was a smart lady. She just did not openly say so. Both at the bottom, who do you have to vent? Marty has Jeff, Jeff has Marty. All of us have been in a bickering where afterwards you wonder what stupid, insignificant thing it was to have been mean to each other about. I would get there more often than Marty. Was it me just frustrated, or was it Marty on drugs? No firm answer other than I hope it would be both of the above. That’s when you start using your imagination to make things appear better. At least I did.
Okay, I don’t fold the hand towel twice but three times. Marty likes twice. Then why should I fold it at all? It got to that point in so many petty instances, it became a part of my life. I couldn’t say it was part of Marty’s. You wouldn’t call one of these a life changing experience in itself, but add ‘em all up and it was. I decided not to even try so much and do things the way she wanted. If she asked me to do something – with a “please”, it may or may not have gotten done because I was afraid it would be done wrong. We are talking the small, soon-to-be insignificant occurrences in everybody’s lives. But they start to add up.
Now that the history has been revealed, is it not unnatural to imagine another way? At least five years ago I had decided Marty was not destined to be much longer here. I wrote her off. At the time of the writing-off theory, it was humorous, now it sounds completely negative and harsh. I apologize. In some of the times I watched her recover from surgeries, my father was doing the same thing, recovering from illnesses in another hospital. We watched him look dead more than once. At this writing, he is doing very well for a dead guy – 96, driving, and taking care of his wife of 70+ years. Gee, wonder where I got my guidance? Sometimes, he will drive himself to the ER at SAMMC and if they don’t tend to him in a timely manner, he’ll drive himself back home. (His major illness is failing kidneys for the past 20+ years. They just keep on cleansing. Stay away from the salt, Pop.)
Time to think of things if things were different. The easy thought is if Marty did not have cancer, she would still be working as a commercial appraiser for Frost Bank. She would put in 40+ hours there and then head or be a part of committee after committee here in New Braunfels. I would be doing my Jeff stuff – work, play, eat, mow, make life fun for others, an occasional interlude with Marty, not necessarily in that order.
I can still do all but one of those things. So, is it okay to think of another life? Now that I have another life, it does not seem so bad, plus I’m in another life. But before Marty died, I had the same thoughts. Whether it was bad or good, it’s over and I didn’t go to Hell, so I guessing it was okay. So far. Now, aside from the huge black hole in my life, I think of what now? How long does one mourn a wife’s death, when is the appropriate time for one to seek companionship, what does one do with all the time saved by not having to do medical things? Ride on. Calvera did not and he paid the price.
There should be a formula to help you navigate after someone dies to calculate how long it will take to get past the guilt/betrayal phase. The guilt phase is the time after you spend thinking you need to not allow her memory to fade. Then when you do start to have better times, you reflect back and feel you are betraying her. Maybe it’s like cancer, there is no cure but we’re making headway.
It’s been three months since Marty died and I do feel some comfort that I can go on alone. Friends say it is your new normal. No, it’s not – yet. It’s what God has given you to contend with. It’s not normal. Normal is a happy life with someone you like to be with forever, someone who you think of before you think of yourself. Normal is fleeting. I suggest if you consider yourself in a normal life, then embrace it. I guarantee it won’t stay the same. Somebody is going to die (aka “leave”) first.
I was given (I used to use we a lot, now I can’t, so I don’t) almost 12 years to prepare for what is now here. My grief started years ago. Then, after Marty’s death, I don’t think I have had the regular grief. There has yet to be a “full blown, sincere” grieving process, and I don’t think there will be. It is the vacancy and oneness with which to contend. Others aren’t so “lucky.” Their loss of normal came quickly and the preparation was not available. Luck works in golf, faith works in life.
Then there is the inevitable – her life story will diminish in memories. Taken over by others that will go through similar adversity and have some kind of life changing effect on us. It’s okay, it’s the way life works, but it’s hard to accept. If your memory never diminished for anybody, imagine how cluttered your memory bank would be. Time to think about other things, other people. Work through the betrayal syndrome. I still am. It’s hard to consider deleting or diminishing 46+ years in a matter of months.
I struggle to maintain good and happy memories of Marty and will continue to do so. 46 years and I cannot try to not think about her. That’s the betrayal part. Other memories come rushing in and need to be removed. Seeing her in pain after surgeries and chemo, while she died, all hard to forget. I want to see her both in motion and still photos, in living color, of a life we had together, outside of the cancer dome. We had some really fun times. We had some really trying times. The normal of it was that we had it together. We worked on it together, we got mad at each other together. When we were both up together, there was no better place to be. When we were down together, it sucked. What’s normal? My guess is it’s adjusting to an ever changing life with a sound mind and following the path the Lord gave us. Sounds easy enough. It’s not.
6 months after
Everything is eventual.
It’s still hard to think no one is helping you (me) through this like I sort of expect them to. Why are people not so sensitive to the death of my wife? Now, why are they not so sensitive of the death of my father? Is there something I’m missing? These were wonderful people that led wonderful lives and influenced many. Where’s the sympathy?
Yes, I am missing something and there is something I’m missing. Most other acquaintances have their own lives, their own thoughts and concerns about their own situations, you and your “sympathy search” will take a back seat, and generally, a way, way back seat. As I said in one of the chapters, if everything remained as a memory as being in the moment and you remember everything as it being current, your brain would run out of memory deposit locations. New histories need to be made and to replace the old. You can keep your memories, just keep moving forward.
Now what? Memories of Marty are becoming further and further apart. I’m thinking of other stuff. Looks like I’m in the “most acquaintances” category, too. Marty and the memories are taking a back seat to me and my most recent history. And it is becoming less and less painful to think I’m not thinking of her a lot more. I’m still waiting, not expecting, for the one moment that will spark a rush of emotions and it will all come out. If it’s there or not, it does not matter. Others will know that Marty will always be with me, because everyone has or will have a similar circumstance. Time to “Ride On”, with the memories in my saddlebag.