A Love Story Continued
Taken from the journal whose pages were filled with the love, joy and incredibly raw and enduring moments that were the last days of David's life. Excerpts are taken from the Caring Bridge digital journal that was created in honor of my beloved husband, David Rupar.
October 7, 2017
"I had a dream"...
Entry Written by Michele
It's been a little over a week now since David and I made the decision to end all treatment and focus on the palliative care and pain management measures offered by Ogeechee Area Hospice. The steady flow of skilled nurses, CNA's, chaplains and social workers have embraced us and have assured us that we've made the right decisions in wanting to keep David home where he can be cared for and loved on by friends and family in his
David spends most of his awake time reclining on the couch in a dream-like state. He walks with a walker since he is extremely weak and unsteady on his feet. He requires oxygen if he decides to go to the bathroom or if he transitions from the recliner to the bed. He no longer sits in his office reading emails and pouring over his spreadsheets and lists. He has moments of lucidness, but they appear less often as the days wear on. He says that he has trouble telling if he is asleep or awake. He dreams a lot and is clearly having conversations in his
sleep. At times he is agitated, and his body twitches as he sleeps. He can be woken from sleep, but he is rarely fully here with me anymore. I know he is disconnecting and that he is doing the work he needs to do to transitions from this world to the next. He is eating very little. If I'm lucky I can encourage him to eat a fruit cup or a packet of oatmeal, but he continues to have no desire to eat or drink much of anything. His blood pressure is lower and his heart rate and pulse are slightly elevated. He fluctuates between fever and cold, so I
have become the official fan monitor jumping to turn the fan on in moments of perspiration, and then off in times when he is cold. All of these signs tell me that the veil between this life and the next is beginning to lift.
Friday, we had a visit from the social worker and the chaplain. It was a good visit. We talked about what things are going to look like when David dies. Our conversation was bold and honest... David sat quietly and tried to stay engaged in our conversation, but his eyes continued to close as he drifted in and out. The chaplain asked him how he felt about dying and leaving me. As the air was being sucked from the room, David sat very still with his hands folded over his chest and his eyes closed shut. We could see that he was struggling to
formulate his answer - but when he opened his eyes, tears began to roll down his cheeks as he told us that he was OK with the dying part, he just wasn't ready to leave me.
I had a dream the other night so with David sitting there in front of me and with the support of the chaplain and social worker, I shared my dream.
In my dream the night was very still and quiet. The drapes on the window were blowing in the breeze and you could see the moon shining bright through the open window. I don't remember anyone else being there but it seemed like we were the only ones in the room. David was in a hospital bed in our room and I was sitting next to him stroking his head and arms. I remember thinking how beautiful he looked, how peaceful he was. In the
next instant he was dead... He died right there in front of me...the pain was indescribable. The sadness overtook my entire body and I pressed my hands over my mouth to try and hold in the deep, guttural, painful moans coming from way down deep inside me. The weight of the air in the room was so heavy I couldn't breath so I was gasping for air and choking as I collapsed by the side of his bed and cried uncontrollably.
I woke up in a fit of panic. For hours that dream stayed with me. It was so real I couldn't tell if I was awake or in a deep sleep. In my dream I couldn't (didn't) call anyone. I couldn't speak, he died and I was in such a panic that I never called and told anyone that he died.
The social worker told me that she thought it was a prophetic dream and that I might be feeling overwhelmed with the responsibility of contacting everyone at the time of David's death. She said that before David dies I need to appoint someone to make those calls for me. She also said that I will be overcome with grief and that I will need to allow myself the time to grieve and to be in the moment with all the pain. I know this but it doesn't
hurt to have another professional remind me of my role as the wife and not the instructor/funeral director.
Thank God it was a dream. Thank God I woke up! I woke up to find David sleeping beside me unaware of my panic state. For now we are holding steady. David is increasingly getting weaker and frail. We are doing what we have to do and working hard to find the peace and contentment we so desperately want to have in this time of sadness.
We continue to pray for all of you! We are thankful for all the love and support you continue to offer us. The calls, the texts and the visits along with the yummy food you bring to our door to sustain us. Know that David and I appreciate each of you more than we can ever say. We love all of you and we know you love us!
September 22, 2017
Entry Written by Michele
"Easy Silence" Dixie Chicks
The way you keep the world at bay for me....
I find a refuge in the easy silence that you make for me, it's OK when there is nothing more to say to me, and the peaceful quiet you create for me, and the way you keep the world at bay for me; the way you keep the world at bay...
It's been a tough week! We've made some hard decisions, closed some chapters in our book, and begun to prepare ourselves for the final events that will bring our "Love Story" as we know it here on earth to an end. Over the past eight weeks, David has had several life threatening medical emergencies that have left him physically worn out and emotionally exhausted. Although these procedures have most certainly prolonged his life, they have come at a real cost, forcing us/him to
look hard at how we want the remainder of his life to play out. In spite of the fact that I would like to say he has more fight left in him, the reality is he's tired and ready to live out what time he has left free of invasive treatments and gut-wrenching therapeutic drug therapies. I support this decision.
On September 13, 2017, David made the decision to step down from his position at GAF. This decision was one of the hardest decisions he has ever made; his heart was heavy. He felt like he was letting his boss and his "guys" down, but he knew he was becoming a liability in the plant. He could no longer carry out his responsibilities in a way that benefited all parties concerned, it wasn't safe and he was having difficult being on his feet for more than a few minutes at a time. The email he crafted from his place on the couch early that morning took him a long time to compose. Typically he pens a letter out with relative ease, but this time the
letter required courage, a courage that acknowledged the fact that abdication of his position meant that he would never in this life, work again. I think he sent the email around 10:00am. All day he read and reread what he had sent, each time his eyes welled up with tears as he scrolled through what he had written. Sometime in the afternoon he mentioned to me with a strange sadness that no one had responded. I knew he had been waiting for Michael or Erika to respond, but neither had.
Monday we had made the difficult decision to call Hospice out to the house. The meeting went as well as we could have hoped. We had enough information to bring to the Dr. on Tuesday so that we could come to a well-informed decision to end David's treatment.
On Tuesday, September 19th we went to his medical appointment to discuss termination of treatment and our transition to Hospice. After a tearful goodbye, we left the doctors office and and headed to GAF to complete Davids exit interview, turn in his keys, phone, and begin the paperwork for FMLA. I waited in the conference
room with Erika the HR coordinator and began the paperwork process for his leave. David's boss called one of the guys in the plant to bring up the motorized cart to take David around the plant to say his goodbye's. It was a very tough day for GAF and for my sweet David. They hated to see him leave as much as David hated to go.
Standing in the break-room waiting for David to say goodbye to the office staff I had a chance to talk to Michael alone. I mentioned how difficult it was for David to come to terms with his decision and to write and send the email. After an awkward pause he tearfully said that Davids email stayed in his inbox all day because he couldn't bring himself to respond to it. He said that he knew what it was about and that it took him all day to build up the courage to respond... Michael's tearful/tear-felt response arrive in David's inbox sometime around 6:00pm the night of his resignation.
Since Tuesday David and I have been intentionally trying to stay in the moment. We know that this next step is going to be the hardest step for us. We know that friends, family and anyone that has come to love David will want to come and say goodbye. Don't be afraid to cry and share your fears, we welcome you!
For the past 12 years David has been my rock. He has loved me like no one ever has. He has protected me from anything that could have harmed me and helped me to live strong and with great courage. He has been a true and faithful companion, and our love story will continue on long after he has left this world. Again, we both want to thank you for the love, the prayers, the food, the tears and the support you have offered to us during this difficult time. We welcome more of the same as we face the very difficult, beautiful, and painful time ahead.
I have found refuge in the easy silence that he's made for me, it's OK when there is nothing more to say to me, and the peaceful quiet he creates for me, and the way you keep the world at bay for me; the way you keep the world at bay...
September 19, 2017
Entry Written by David
Last week was the 4th week since gallbladder removal. That was the target date for resuming chemo. I felt too fatigued to take the treatment, but it never came up since high liver enzymes prevented it anyway.
Discussed with gastroenterologist and he wanted to do another endoscope to see if it was a blocked bile duct/stent or the first stages of liver failure. I got pretty jaundiced over the weekend, had a fair bit of pain, no appetite and incredibly tired.
When he got in, he found the duct/stent almost completely blocked off. There was a lot of infection as well as bile. He was able to flush everything and thought I would feel better in a day or two.
Another close call though. He said the infection would have probably gotten to the bloodstream in another day. Good thing I listened to Michele's advice and had the procedure.
Still very weak and tired. Have an apt. with the oncologist in a few hours. We plan to tell him we are done with chemo. It is just too taxing when I have no strength. After that it's a short trip to work to clear out my desk, pass along project info and say goodbyes. I hope I have the energy for all of it.
September 13, 2017
Entry Written by David
Friday will be 4 weeks since having gallbladder removed. I have not bounced back as I had hoped. Have been taking 10 mg Ocycodone every 4 hours to manage the pain. Last week the oncologist gave me a Rx for Fentanyl patches. You leave them on for 3 days so the Oxy can be cut back. They seem to be working. It is a low dose to start. Only need 5 mg Oxy now and not as regularly.
The downside of the patches seem to be fatigue and lightheadedness. Have to be very careful when standing up. For those of you with industrial or manufacturing experience, you know those symptoms are incompatible with work. So it is time for me to close the book on working. It is a tough decision, but there is little alternative.
The scary part is not knowing whether 6 months FMLA leave is sufficient. My medical benefits and life insurance are through my work. The Gastroenterologist recommended that I stop working after getting the gallbladder removed. He did not seem concerned about running out of leave time. (Talk about a mixed message
August 31, 2017
Entry Written by David
I left off at the last post with no resolution...
Stayed in the hospital 2 days for the pneumonia. In Thursday, out Saturday. Went back to work Monday but only doing 1/2 days. Still pretty weak and tired. No appetite is part of the problem. If I force myself to eat a little something, my stomach feels better. And eating seems to give me more strength. But finding food that is appealing is quite a challenge. Can't eat much at one sitting either. About 1/2 a bowl of cereal and I'm full. Still. trying to figure out what my body can process without the gallbladder.
Have to stay on the pain meds pretty much full time now. But that's not so bad - at least it's still fairly manageable.
Thanks to everyone for their prayers and kindness. Michele and I appreciate it.
I am so blessed to have such a loving wife.
August 24, 2017
"Out and Back In"
Entry Written by David
They kept me until Sunday to pump some iV antibiotics. The idea was that because the gallbladder had ruptured. there was a risk for infection building in the abdomen. Ended up as 3 days inpatient.
After getting home, had some pain on right side of chest / back including the shoulder along with some shortness of breath. At first we thought it could have been from the gas used during surgery. But it seemed to get worse rather than better.
At a routine oncologist visit Thursday morning, they ordered a chest CT to look for blood clots or pneumonia. No blood clots seen but high potential for pneumonia. So joy of all joys, I was readmitted to the hospital for IV antibiotics and more tests. Here is praying for a short stay.
Please keep Michele in your prayers as she is under a lot of stress right now.
August 19, 2017
"Gall Bladder Removed"
Entry Written by David
Had another close call yesterday. After speaking with the surgeon in the morning, the surgery was scheduled for 1 PM. Later on we were told we would probably be taken down for prep at noon. Fine.
Naturally noon came and went. By around 1:00 they came rushing into my room because my heart rate was 170. Talk was to postpone the operation until the next day. This was an eerily similar scenario to the delayed surgury back in June. By 2 PM my heart rate it had climbed to 220. Hospitalists and nurses were pushing hard
for a delay. The harder they pushed, the harder I pushed back. They moved me to another room with more monitoring, it is the step-down from ICU.
They were trying to contact the cardiologist who gave the green light for surgery before. And I was being a major pain in the ass to anyone who seemed involved in decision making. I was polite, but forceful.
Not sure what turned the the tide but the next thing I knew, they were coming in to take me to surgery. YAY! Downstairs, they weren't happy with IV connections so they redid all of then.
Michele got all the post-surgery details from the doctor. The operation that was supposed to involve 4 incisions and last 30 minutes or so took 3 hours and needed 5 incisions. It turns out that the gall stone had blocked the bile duct completely. That caused the bile to backup and burst the gall bladder. So rhe gall bladder removal also involved cleaning up all the leakage. Michele ssid the surgeon was happy but clearly shaken. A young guy, he said it was the most difficukt one that he ever did.
So that's it for now. I feel good. God is still watching over us and providing his blessings.
I apologize for any spelling or gramatical errors over and above my usual. This post was mostly writen under the influence of dilaudid.
August 18, 2017
"Partial update to a busy week"
Entry written by David
Monday night brought another bout of pancreatitis, similar to the one in January that started this whole process.
Contacted the gastroenterologist first thing Tuesday morning. He had me come into the hospital for another endoscope. He wanted to do an alcohol ablation of the nerves causing the pain. That kills the nerves completely. When we wemt home Tuesday the original pain was gone but there was new pain on the other side of my abdomen.
That pain got progressively worse overnight, and I develoed a slight fever. So it was back to the hospital for CT scan on Wednesday. The gastroenterologist said the gall bladder looked inflamed and he wanted to wait until Friday morning to reassess. Went to get a chemo treatment Thursday but the onculogist wisely wanted to wait
until the pain issue was rrsolved. But by Thursday evening the pain had not lessened at all and my temp was u to 102.
So back to the hospital Thursday evening to be admitted. The gall stone they saw with the ultrasound was the likely culprit. Thay are planning to remove my gall bladder sometime this morning (Friday) .