There is no loss so deep
as the loss of your true love and inspiration.
Your biggest supporter, your soulmate.
There aren’t enough tears;
There is not enough sorrow.
There is only the promise to try to carry on
and to keep living
with you always by my side and in my heart.
I woke up in the middle of the night with “I carry your heart with me” in my head. That was the only line I could remember at the time but slowly the rest of the last line (I carry it in my heart) emerged. Slowly, I recollected that I had seen this in a movie. It was at the end of the movie and was spoken by a woman. Since it woke me up, I wanted to find the whole poem. With the help of my bedside iPad and google, I was able to determine that the movie is In her Shoes and Cameron Diaz recites it at the end.
Gary and I have watched that movie more than once (it is re-run frequently on the cable stations) and have enjoyed it. The poem by E.E. Cummings speaks volumes to me now.
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go, my dear;and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart with me(i carry it in my heart)
I have tried a few times to build up the habit of meditating. So far I have not stuck to it, although now might be a good time to try again. After reading Living Your Yoga: Finding the Spiritual in Everyday Life I was intrigued by mantras. When I was trying to relax or sleep in the reclining chair in Gary’s ICU room, I came up with the following mantra:
I breathe (on the inhale)
Life and my love to Gary (on my exhale).
I would repeat this silently to myself as I slowly breathed to send healing thoughts and energy to Gary.
During the night before Gary was to go to surgery he was very nervous and was having difficulty breathing. I was up most of the night with him holding his hand and talking to him. I told him all of the things I had learned about breathing and calming breaths from my years of yoga. He told me it helped so I babbled away at him about all different subjects all the while reminding him to breathe slowly and calmly.
That was the last night of conversation and closeness we had as he was Intubated the next day in order to have the surgery. We got through that long night. And while it was a stressful night it is also one I don’t want to forget because we were a team, as always, battling together.
This is how I described Gary to people. Although perhaps I could have also said stubbornly optimistic. He was just so confident that things would get better. He pushed himself his whole life – whether mentally or physically to accept new challenges and to get things done. His battle with cancer was no different. He refused to sit in the chair every day. He would force himself to get up and do something because he was stubborn and convinced that he could do things even if it took him longer. And he stubbornly believed that he would recover from the day’s exertions over night and feel better the next day. Recently I would sometimes get mad at him for pushing himself so hard but he was always so optimistic and would convince me and himself that he would feel better with time. For him doing something, even if it was the wrong thing was better than doing nothing at all. Sometimes his positive attitude worked and sometimes it didn’t.
As I am grieving I have certainly gone through the “if only” conversations: If only I had called the doctor sooner, if only we didn’t attribute his cough to the effects of the chemo, if only he didn’t push himself so much, if only I hadn’t let him push himself so much, if only we were not SO positive and naive about his recovery, and on and on. While I can’t stop my mind from wandering in those directions, I know there is no magical answer and no complete understanding. Eventually I’ll come to acceptance and life will move on in new directions. I know it will take time. Right now it is just raw and painful. However, I do try to remember Gary’s positive attitude and work to do something, no matter how small, each day.
I went to see my mother today. It wasn’t pretty. She is in assisted living about 1.5 hours away. I hadn’t seen her since 12/14 when I put up her Christmas tree. I called her last week to tell her about Gary’s passing. Mom has Alzheimer’s and while she still remembers me and her family, she has no short term memory. The conversation last week did not go well since, even though I had called her during the holidays and while Gary was hospitalized, she did not remember he was ill. She cried and told me how sorry she was and that she couldn’t believe it and would pray for Gary.
I did speak with her a few other times this past week and it time it was as if she had just learned about Gary’s passing. The folks at assisted living have been checking in on her frequently and helping her to understand. It was similar when my Dad passed away – it took her quite awhile to come to grips with it and remember that he was gone.
Today was no different. I had to repeat to my mother over and over that Gary is gone and then watch her cry and tell me how sorry she was. The tearful conversation went like this:
“Becky, Gary died? I can’t believe it, I am so sorry.”
“Yes, Mom, he died.”
“When?”
“Last week.”
“How come I didn’t know?”
“You did know, Mom, you just don’t want to remember.”
“You’re right I didn’t want to remember. I can’t believe it. I’m so sorry, Becky. Was he sick?”
“Yes, Mom, he had cancer. He got pneumonia and he just couldn’t recover.”
“Why didn’t I know? How can I be so stupid?”
“It’s okay, you didn’t want to remember.”
“No, it’s not okay. I am so sorry, I will pray for him that is all I can do.”
A variant of this conversation was repeated many, many times while we ate lunch in her apartment. Obviously this is incredibly painful for me to repeat out loud that Gary has died (my mother doesn’t mince words so that is the term that we used). I did distract her a bit with a holiday letter from some other relatives but she did come back to Gary’s passing more than once.
“Becky, Gary died?”
“Yes, Mom.”
“YOUR Gary? Gary Bottom? He died? I can’t believe it.”
Queue the previous conversation.
She was also concerned that she didn’t attend the services. I had hoped to find someone to bring her down but that fell through. Thankfully I didn’t have to lie when I told her that the weather was too bad for her to attend. They had freezing rain in her area on the day of the services. Other folks who had to travel from the north were not able to attend due to the weather. So far, even though she has Alzheimer’s, I have never lied to my mom about anything and will do my best to keep it that way.
It was a long and painful two hour visit. Unfortunately I’m sure we will have that same conversation the next time I visit. I am thankful that my mother still knows me and is able to function as much as she does. Although, she is definitely going downhill and getting more confused over time. While I do have so much support from Gary’s family, it is hard not to have my own mother be able to give me a hug and comfort me.
I was so exhausted when I got home I took a nap – my ultimate escape. I still have trouble comprehending that Gary is gone. I know it is true and I take one step at a time but it still seems all so surreal.
Thankfully a few friends and family called tonight. Thanks Deb, Chris, and Karen for making those calls. Sorry, but I’ll admit I am definitely feeling a bit sorry for myself tonight.
I am working to keep taking that next step.
I have been replaying the different conversations in my head over the last few days and it seemed important to record them. I’ve already documented the first difficult conversation with the doctors in my post, Difficult Decisions. That was on Sunday. On Monday evening Dr. R stopped by. Since he was the surgeon for Gary’s esophagectomy and treatment of his subsequent complications, we do have a relationship with him. He knows Gary and me as well as Gary’s attitude fairly well.
It was really a blow to me when he told me that there was really nothing more that he or his team could do to help Gary. His team could not find the source of the fistula and it was now up to the pulmonary specialists. Dr. R explained that Gary was too weak to operate and even if the pulmonary folks could stabilize him enough for surgery, the recovery would be extensive. They would have to “rearrange” his anatomy to keep him alive while his lungs healed, if that was possible at all. Then, after 4-6 months of recovery there would be additional major surgery to “fix” his anatomy. And he didn’t neglect to point out that Gary was already weakened by second stage cancer. While I believed the ICU doctors when they explained Gary’s grave condition, hearing it from Dr. R really hit home. This is when I really started to lose hope and I contacted Gary’s sister to be with me the next day.
Gary’s sister Chris arrived in the late morning on Tuesday. While I knew that Gary really didn’t want his family to see him this way, Chris did go to see Gary. Naturally she was shocked since he was intubated and connected to so many tubes and IVs. I am truly sorry she had to see him this way but it was also helpful to me to have someone else react to him. Obviously no one would look well in this situation but Chris was able to see the profound change and gauntness that my hope for recovery had been keeping me from acknowledging.
Dr. Goyal came to see Gary and then tracked Chris and I down when we were getting coffee later in the day. Hearing Dr. Goyal explain that there was really not much more to do for Gary really hit home. She explained that IF it was possible to heal his lungs (which was doubtful) he would likely need a tracheostomy (breathing through a tube in his throat) and need significant care over the years. Just like Dr. R had the previous night, she explained that Gary’s cancer just didn’t follow the expected path. No one really expected the cancer to come back. Then no one expected the docetaxel chemo that he was now receiving to work so well. He just kept people guessing and pushed so hard to keep going. She expressed Gary’s positive attitude and desire to do things and how that might not be possible going forward. This was all right before we had the final family meeting with the ICU doctors.
We met with the ICU team later in the afternoon. I really didn’t expect to have to make a decision at that time but in the end felt that there was no other choice. The doctors had just done another bronchoscopy and adjusted the balloon in Gary’s airway. The x-ray from the morning had shown Gary’s lungs worsening – even I could see the change with my untrained eye. They explained that while there was one more procedure that could be performed (inserting a smaller valve to block off a more localized part of his lungs) there really was not much hope of that restoring him to normal lung functioning. Whatever happened he would likely need a tracheostomy in order to breathe. There was no indication that his lungs would ever recover enough to no longer need that assisted breathing.
Obviously I was distraught. I tried to explain how heart breaking it was to me to believe that Gary was still there in his sedated state, how could I give up on him? The doctors explained that the didn’t really know what was truly left of Gary. He had been on paralytics for many days longer than desired and he was on 100% oxygen – both of which can be toxic to the system. There was no chance that he could breathe on his own. The ventilator at 100% oxygen was keeping him alive. The doctor reviewed Gary’s unusual history. The fact that he had started with stage II cancer and a good prognosis after his surgery (a clean PET scan) to the fact that he had unexpected compilations and then reoccurrence of his cancer at Stage IV. Even if he could recover from the lung damage, he still had an incredible fight for his life against the cancer. Despite the additional, unusual fact that his latest round of chemo was working so well (that chemo doesn’t usually work that well on his type of cancer). His cancer fight was just a dichotomy all around.
Waiting longer to make the decision to turn off the ventilator just seemed like more torture for Gary. Thankfully Chris was there to help me make the decision and to see that there really was no other alternative. Gary loved life and would never give up, but Gary also valued a full life. He was already miserable about the days he spent in the chair when he was just too tired to tackle any of his many projects. He could never have accepted the life of an invalid. In the end I had to trust the doctors and my heart and turn off the machines. Did I ache for one last kiss, one last goodbye, one last, “I love you”? Absolutely but it was most important to me for Gary to be comfortable, pain free and free at last from his cancer. In my head I know I made the right decision, I just wish my heart could accept it as well.
Rest in peace, my love, please know that I had only your best interests at heart. I can only hope someday that my doubts will leave me.
When Gary was first in the hospital, Dr. Goyal explained the possibility of intubation and mechanical ventilation. Sometimes pneumonia advances very quickly and the best method to combat it is to intubate the patient and use mechanical ventilation to breath for the patient while the lungs heal. She also explained that there are cases where the lungs don’t heal and the patient never recovers and the family must decide to turn off the ventilator. She didn’t want to scare us nor did she expect Gary to get to that stage but wanted us to discuss the possibilities and get Gary’s permission in case ventilation was needed. Perhaps we should have paid more attention. This was on the Friday after Gary was admitted and he was starting to feel a bit better, although the dry cough was still painfully plaguing him. We all agreed that if intubation and ventilation was necessary, that is what should be done. No one thinks of it not working nor having to make any hard decisions later on.
When it came time to intubate Gary there really was no choice in either of our minds. He was anxious because he was having so much trouble breathing at that point. He had also just been told that this was the only way he could have the surgery to place the feeding tube. We both understood that he needed nutrition in order to get better. In addition, the surgeon would be able to perform the endoscopy and bronchoscopy and determine what was wrong – find and fix any leaks.
Once we made that decision things happened quickly. The nurse, Kerin, asked if we had previously discussed end of life issues and we should take the time to figure out any of Gary’s last wishes. Well, that was certainly scary! He is having trouble breathing and we are both scared out of our wits and now wee need to think about end of life? That is the last thing you want to think about or discuss! I explained that I was pretty sure I understood his wishes. We both went into this with a positive attitude – put in the tube, go to surgery, figure things out, and heal him. Certainly it doesn’t seem appropriate to say goodbye – that is hardly the attitude that I would want before such a procedure. So, I gave Gary a kiss, told him I loved him and that we should do this to make him better. Unfortunately a positive attitude wasn’t enough.
Obviously everyone that gets put on a mechanical ventilator does not die. However, based on the fact that during his final days more than one nurse or doctor asked if we had discussed last wishes before Gary was intubated, it is clear that many people do not recover. This makes it even more important to discuss final wishes and end of life. Given that Gary had cancer, it probably sounds odd that we never had long discussions about this. We both maintained the attitude that he would beat the cancer and discussing death seemed like letting the cancer take hold rather than shutting it out. That’s another reason that we hadn’t gotten a will – you don’t want to believe that it is needed so you don’t discuss it (although just this past fall we did discuss a will, agreed we should have one, and put it on the list for the first of the year). We also believed that it was cancer that would ultimately take him and there would be time. I always assumed there would be a trip to the doctor when we would be told there was nothing more that could be done and to go home and put our affairs in order. Pneumonia changed all that.
Gary and I talked all the time about everything. I think that is why we got along so well – we explored so many topics together and supported each other in so many ways. Thus, even though we never had an explicit conversation about it or wrote anything down, end of life conundrums was a topic of conversation. Gary held life very dear and would do anything necessary to remain alive. He proved that over the past two years. But, the definition of alive is important. Neither one of us would want to be kept alive mechanically. As harsh as it may sound, Gary believed that modern medicine kept his father alive too long. Certainly there is a difference between living and being kept alive. I know Gary would not have wanted modern medicine to keep him alive with no real possibility of an active or fulfilling life. We had plenty of those type of difficult conversations while sitting on the deck or at the kitchen counter with a bottle of scotch!
I encourage everyone to have those conversations. Better yet, write down your wishes and store the paper away for safe keeping. It doesn’t need to be official. Yes, it sounds morbid and is not an easy thing to talk about. But, if you ever have to make a decision for your spouse or loved one, having something from them to help ease your pain and guilt will be worth its weight in gold.
I don’t regret my decision to turn off the ventilator. It was made with love and I had the support of family, friends, Gary’s doctors, and medical backing. It was the hardest thing I have ever done and I pray some day I will be able to let go of the hurt.
Gary is gone. I am in shock. I will hold his love in my heart forever. I know he would want me to carry on so I will as best I can. I hope I can share my thoughts here as a release and legacy to his strength, love, and positive view on life.
They needed to move Gary a bit since remaining motionless in bed is also dangerous. Generally Gary doesn’t tolerate moving too well due the suspected leak. When they do move him he “desats” – his oxygen level decreases significantly. After the movement, they needed to turn up the oxygen saturation level on the ventilator up to 100%. The goal was to reduce this level during the night. However, at about 4:00 am there was serious concern when his O2 level went down and didn’t readily come back. There was discussion of PEEPs (positive end-expiratory pressure) and other adjustments by the respiratory folks. I could tell there was concern and the attending physician was called in. They did get him stabilized but he was still on 100% O2.
That’s when I got the first talk from a doctor about the fact that they are running out of things to do. The attending physician told me that Gary’s lungs have been damaged by the pneumonia and the aspirated “junk” in them. They will keep trying things but without knowing the source of the aspiration, there isn’t much they can do. And, because his lungs and oxygen intake is so compromised there really isn’t much they can do. We just have to wait and hope Gary’s lungs heal themselves. In addition, with the oxygen at 100% there is no reserver on the ventilator. The doctor asked if there was someone who could come sit with me. Oh, oh, THAT was really scary. I made the call to Gary’s sister that things are looking pretty grim although at this point Gary is still stable.
My dear friend Terri came to be with me – I certainly needed a hug. There are medical reasons why Gary’s sister who lives locally can’t come into the hospital. Gary’s other sister did offer to come down (she lives a bit further away) but I was comfortable with Terri being here. Thank you, Terri, for being with me today. Another of the doctors (sorry I can’t keep all of the names straight as there are so many) suggested a meeting. It was great to have Terri with me to help absorb and ask questions as it was certainly a difficult discussion.
Basically the doctor reviewed where we are. Gary’s lungs are very damaged and they are using a particular ventilation technique to help them heal. The idea is to make sure not to over inflate the lungs as this could damage them more. Because they can’t find the source of the fistula (connection between the lungs and gastric area) that is the cause of the aspiration, there really isn’t much more they can do. The only hope is that over time the lungs will heal but they are currently very compromised. In addition, Gary is currently paralyzed so his body doesn’t unconsciously try to fight the ventilator. It is not good to be paralyzed for too long. If over the next few days Gary doesn’t improve and his lung function continues to diminish we may have to make the decision to turn off the ventilator. This would be a “comfortable” passing. Luckily Gary’s other systems such as kidneys and heart continue to function well. If one of these system were to fail it would be a less than comfortable passing so they recommend a “do not resuscitate” order for these possibilities. I am totally freaked out that I may have to make that type of decision. We always thought the cancer would be what took Gary down – not pneumonia or something else. With cancer we expected the, “there is no more we can do, go home and put your affairs in order,” discussion with time to digest and prepare. But ultimately it is the cancer that he is still battling because that is what has weakened him so much and required the esophagectomy that so altered his anatomy.
I can’t even begin the describe the shock of that conversation – someday I may try but there are more developments to report today.
While I was digesting this conversation (with Terri’s awesome support) and sharing the news with family, Gary was providing more information on his condition. When the nurse suctioned his breathing tube she got some green “junk”. When she turned on the suction for the gastric tube that runs from his nose to his stomach she found the same green colored yuck. Now we have a clear indication of a connection between the lungs and the gastric area – a connection that should never occur. This caused another pow wow of doctors and they decided to perform another procedure via the bronchial / airway tube (called a pulmonary intervention, I think). They will do another bronchoscopy and send a camera down the tube. In addition they will send down an inflatable balloon and temporarily block of sections of Gary’s lungs to see if they can discover where this leak is occurring. The changes in breathing when they block off a section can indicate where the leak is. Gary has already had two bronchoscopies to look for the leak with the camera but nothing has been found. This time the team could actually see the green bile. This allowed them to find the lobe where the leak is happening and temporarily block it off by inflating the balloon. Certainly acidic gastric contents in the lung is very damaging – it is no wonder Gary’s lungs are so damaged! With that area of the lung blocked off the other sections of the lungs will hopefully have a chance to heal since there should be no more junk reaching them. The balloon is obviously a temporary solution but it can at least be left in place for a few days. There are still grave concerns for the blocked off area since it is still connected to the gastric area and the fluids will likely continue to build up and cause additional infection. But, hopefully this buys time for the rest of Gary’s lungs to heal a bit and make him stronger while the doctors put their heads together and figure out the next steps. Certainly Gary is still in critical condition but more information is always better.
Congratulations if you made it this far! At this point I am physically and mentally exhausted and just recording the details I can remember rather than crafting a well organized post. These posts are really meant for me but they also provide a way to share information for those interested.
Day nurse: Meaghan. She has been awesome at explaining things to me and also attended the meeting with the doctors. She even demonstrated how folks know that there is a fistula. She explained the oxygen volume reading on the ventilator and showed me that how when she turned on the suction for the gastric tube the oxygen volume decreased. This could only happen if there was a connection between the stomach and the lungs. This was before the discovery of the green junk that makes the connection more obvious.
Night nurses: Neil and Katie
In addition we were visited by the Infectious disease doctor as they have been reviewing all of the tests. They are certain that Gary does not have the pcp immune type of pneumonia and will modify his antibiotics a bit based on the bacteria and yeasts that have been found in the different tests.
Blatantly Life 