Sunday, August 2
Text to family 4:20 Yesterday visit with Bill/Kathi. PT came for intake & exercise. Shower w/new bench is great. Today a restful wake up after a good night sleep. Cousin Karen came for a visit. Tomorrow we meet w 1st oncologist Dr. Yee to find out if gene sequencing is complete. Twill then be time to select Dr to continue. 2nd (Compass Oncology - Tigard) Dr Shango has set up Tue appt with radiologist to discuss radiation. Also outpatient Palliative appt is on Tues pm
Monday, Aug. 3 We had an appointment scheduled with Dr Yee. After spending some time over the weekend thinking about the appointment with the other two Oncologists, Nathan made the decision on Monday morning to call and cancel this appointment.
Text to fam 4:30 - Decision made. Nathan has chosen Dr Shango of Compass Onc. Did not keep our appt w/Dr Yee today. Shango will see tests run by Yee. Home RN came today. Spencer returning tonight so let the cribbage continue!
Tues. Aug. 411:45, Text to fam- Decision made. Radiate that tumor to shrink it and lessen pain. 10 days of 15 minutes. Body Mapping is tomorrow at 10:30. Start Fri or Monday.
Palliative appointment on ZOOM where we discussed the medication adjustments and also the suggestion that we get a locked box. Nathan really liked that idea for many reasons.
Today we had an appointment with Radiologist at Compass Oncology in Tualatin for a discussion about how radiology would help shrink the tumor size in order to relieve pain. The radiologist really believed that the back pain was caused by the tumor size.
Aug 4 - A TIERSA BLOG ENTRY titled- "MY WORK"
So my new job has sorta snuck up on me. But it's the job I have right now. It has moved my secondary job of house cleaning, dishes, yard and laundry to a back burner, as my primary job is now about Nathan.
It includes keeping supplies ordered for the paper bed covers and wipes.
It has me wiping his bottom 8-10 times a day, and with that he is only really comfortable with it being me.
It has me keeping track of his medication and documenting it in both my travel along book and on the whiteboard so that he can see.
It has me opening the blinds when he wants sunshine and closing them to keep the neighbors not so privy to his commode.
It has me offering food that is nutritious to a man that has no appetite or real desire to eat.
The direction of shower and exercise.
And then there's just being supportive.
There are moments when he's not himself, asking if we remembered to bring the robot, or if the things he sees are right. I choose the answer that is kindest.
I fight my frustration and fatigue when I am woken up in the middle of the night - knowing that this is important work. This is the work that is needed right now. This is mine to do. It's Love.
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Wednesday, Aug 5 - This morning we went for mapping at Compass by the Oncologist. This was very painful, in spite of the pain medication that we prepared and took. For next Tuesday, the radiologist is asking that we double the pain meds, so that they can effectively do the radiation. I don't know how that will be possible, but we will try.
Wednesday, Aug 5, 2:30pm text to family - Nathan set his goal to get stronger. Today we took the step to prepare for radiation to shrink the tumor for less pain. Tho it was painful - tis done! Actual radiation begins Tuesday. Tomorrow we will do the 2nd and final back test injection to prepare for the nerve block when it is needed. . Things are moving along. GO TIMBERS - tonight at 5.
Later, Dr. Shango called. She said that she had been looking over Nathan's case and that she didn't want to give us false hope, but that she really wanted to rule out that it might be testicular cancer, and they had done no scans or tests to show that it would rule that out. If it were to be testicular, that would be a whole different treatment with a whole different prognosis. So she ordered us a scan. She does not want to start radiation without this ultrasound.
Text to family 4:00 -
We've just had a jolt.
Dr. Shango has called to tell us a testicular ultrasound has been ordered. T cancer has not been ruled out but sorta presents like this. While she does not want to give false hope, testicular cancer is curable with chemo and would be a completely different course of treatment. Hopes that ultrasound can be done tomorrow. She just doesn't want to start radiation w/o this ultrasound.
Thurs Aug 6 10:24 text to family -Good morn. Testicular ultrasound scheduled for this afternoon. (Extra jelly, please ;) - oops TMI). We meet for results tomorrow am on zoom to see if diagnosis changes. All 3 oncologists have been unable to identify the origin/kind of cancer and generically have called it Bile Duct Cancer, as that's hard to see. It still may be, but we will welcome a finding that identifies this mass as testicular. We will wait to see. Currently having second test shot for L3,4 5 block to be done in two weeks for pain after insurance approval.
Thurs Aug 6 - Today in the morning, Nathan had the second (of two) test shot for L3,4,5 block to be done in 2 weeks for pain after the insurance approves it. This is again at Dr. Mirchandani's office in West Linn. He won't be doing the block however as Dr. M is moving out of state.
Nathan was very groggy today on the 20mg, and it took all Kacy, I and Spencer to get him in the car and out. Then in the afternoon, we went to have the ultrasound of testicles. That wasn't much easier although with all the pain meds on board from this morning, it made it doable. On this day, there was a hope that perhaps it is testicular cancer which has a very different survival rate - even in a stage 4 spread. We did that here in Woodburn. While it was done here in town, the appointment to find out the results was set up with the oncologist for tomorrow (Friday) morning at 10.
Today also in the afternoon, Don and Debbie came to visit us. It was a good visit with Nathan, in spite of it having been a tiring day. They brought an amazing basket of snacks, love made projects, and this simple vase of flowers. They also helped me with the lights in the back yard after Nathan went in to lay down and rest. The lights had been so out of joint for the last few months, It felt great to have them looking again. It probably seemed like a really little thing, but I appreciated the help in getting it done.
Aug 6, 8:30pm Family text- Well a bit of a groggy day. Spine Morning injections plus the anesthesia helped later for the ultrasound, but buckled legs and kept us support team on our toes and using the wheelchair more. Loving back deck visit with D&D. Looking forward to the online discussion with Dr. Shango tomorrow morning for the ultrasound results. Good night TeamNathan.
Fri, August 7 - This morning we were still really hopeful that testicular cancer was found. So strange to have such a beam of hope - for even at stage 4 - all spread everywhere, there was still a hopeful chemo remedy that for 95% of the cases could reverse it and buy another 5+ years. It was so strange to hope for testicular cancer.
Our 10am zoom appointment could not come soon enough. At a little after 10 we were still waiting in a "waiting room" for the dr to appear. Upon calling the nurse, it appeared that after the 20 minutes of additional waiting, the Dr had also been in a waiting room, and we were told that she would have to call us at lunchtime. I asked if there had been any result from the test the day before and after checking she came back and cheerfully told us that the Testicular cancer check was negative, and that was good news. I had to inform her that perhaps under normal conditions, but for us, it was very sad. It meant that we were back to the undefined and shorter term.
Text to family 11:13 - Disappointed to learn that ultrasound and blood tests are negative for testicular cancer. Appt with Dr moved to noon.
The Oncologist Dr. Shango called during her lunch and spoke pretty frankly with us. Upon calling the kids in, she talked to us about the need to look at Hospice. It would provide us support. I think that it caught us all off guard as we had been thinking still that we had months to spend together. She offered a hospice that they are used to using, but after spending some time with the insurance company, I decided that the best hospice to use would be the Legacy group in McMinnville - the same group that Nathan had trained on Epic a few years ago. Dr. Shango would put in an order for it, however, this didn't happen before the Friday closed. They also weren't sure that they would be able to get to it before Monday.
Aug 7- A TIERSA BLOG ENTRY titled "ALL THAT IT IS, AT THIS MOMENT"
I'm on the phone checking for in-network hospice companies.
Spencer is with the PT that is with Nathan
Kacy is up crying upstair quietly as Shana sleeps.
Megan has been rocking Ember and has just taken her upstairs for a nap.
Corin is hanging with Joe watching TV during this busy moment, where three dogs play happily around a tent set up in the back yard for camping.
"The disease is really progressing fast, I'm afraid, Mrs. Helwig. . I'm so sorry I have to tell you this over the phone. From the symptoms that you are explaining, I just want you to feel supported over the weekend so that you won't have to go to the hospital. If we can get hospice on board today before the weekend, that would be best. It's not that you can't go to the hospital, it's just that patients that do, at this stage may not get to come home."
And here is home. We are all helping. All here. All that it is at this moment. 2:12 8/7/20.
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As it happened, Joanna, the Palliative Nurse Practitioner called to see how things were. She was stunned that Dr. Shango had felt that we go on hospice this late in the day and this soon, in Nathan's prognosis. But she offered me three options, in trying to figure out the dilemma of the afternoon - that being that Compass would be closed for the weekend, the home health nurse would only be a little help but tell us to go to the ER. Joanna very boldly asked me where Nathan would want to pass away. I did not know that answer and so I went out to speak with him on the back deck.
Megan and the kids were busy setting up the Helwig Campground. The tent was being pitched, but I asked Spencer and Kacy to come join dad and I for a quick discussion on the deck.
"Joanna has asked me a tough question that I don't know the answer to. She has asked me, where it is that you are hoping that you will die. At home, or at the hospital."
Nathan looked at me and said, "I'd like to die here, if you're not too scared."
"I'm not scared. I think we can do this, if that is your choice. We can do it, when it's time."
Then he turned to Spencer.
"Spencer, what do you think?"
"Dad, I don't really want to weigh in on this. This is your decision and I want to support your choice."
Then he turned to Kacy.
"Kacy, what do you think?"
"Dad, I am totally selfish, I know, but I'd rather you be here. I can't even go to the hospital"
"Ok then, We'll do it here with hospice," he said.
And I went to make the call back to Joanna.
The choices she offered me were harder.
#1 Go with a different hospice that could get him covered for this weekend.
#2 She would prescribe meds and though she is off this weekend, would make herself available to us. #3 Use the emergency room, but knowing that he would not come out of the hospital if he were to go in.
We chose Option #2, and Kathi and I went to Walmart. They only had the anti-anxiety. They did not have the liquid morphine.
As a result of Megan, Corin and Ember arriving today, they set up the tent in the back yard and the kids (and dogs) had also been swimming in the pool. We ordered pizza for dinner and Crazy Pizza Planet Lady delivered the pizzas. She left, but then came back for pictures with the kids. It was after the pictures that when crazy Grandma Tiersa came back out he whispered to her that he had known it was her all the time. We sat outside together and enjoyed the time together.
Nathan went in around 6 and while tired, I suggested that Megan was proposing roasting marshmallows. Giving Nathan the choice of passing, us bringing him marshmallows or using the wheelchair for the first time here at home to go out, he chose to go out in the wheelchair to take part. He loves camping. This camping in the back yard was very special.
5pm Text to family- Uncle Bill and Aunt Kathi coming to our yard camping adventure. There are tents and grandchildren.
(An entry from Megan)
It was camping day. Kacy and I had been chatting about setting up a camping day at The Helwigs for a while, and the previous Saturday had poor weather. Today was supposed to be beautiful. I packed up the kids, tents, and dog and headed out. There was a meeting that was to happen on my drive there (I would listen through the phone). However, the meeting didn’t happen. I was ready to come in with great excitement and eagerness for creating a most special day following whatever news there was- and we came in right as they had rescheduled. Testicular cancer was the hope- cureable was the word. Kids were there, and hungry, husband was husband and dad once again in a world where he had just been a son. The hush of the meeting happened, Kacy and Spencer pulled into the room with Tiersa and Nathan, and end of life discussions were had.
I quietly pitched the tent in the backyard as Joe helped me corral the kids. Such a weird contrast of normalcy and event planning in the backyard, while huddled in a yellow room was a family discussing the end of a father’s life.
We went forward with the plans. Pizza was ordered. Firepit was pulled out and prepared, kids played in the pool. While Nathan wasn’t there for portions, I hoped and desired that the sounds of the kids laughter and fun would ease out toward him. Hot dogs were roasted, and marshmallows prepared. Nathan came out for marshmallows. I asked him if wanted a roasted marshmallow, and he said he would love one. I roasted it and asked if he wanted it plain. He told me, “I want the smore. The whole thing.” I was surprised, given how little he had been eating. He ate the whole thing. There was love and light that evening.
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The crazy Pizza Planet Lady delivered the pizza.
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Text to Palliative - 8:57 am He was pretty rolly eyes back into his head and not responsive earlier....but has rallied as the kids have arrived. Significantly different than last night. Still transferred to the commode pretty well.
8:30 am discussion with Tiersa -
"Honey. I'm dying and I can't stop it."
"I know. We'll get through this. I love you."
"I love you too."
Sat August 8 - Bill and Kathi came back to our back porch. Chris arrived from NYC and we all sat on the back porch for a visit. We were a little nervous as Nathan was so tired and often looked like he might fall out of his chair. Corin and Ember left for a visit with their Grandparents in St Helens.
Text to fam - 7:30pm Morning. Yesterday was such a collision of difficult and hard. The family camping was very special. This morning there's a pretty significant decline. It is Nathan's wish to remain at home, (after consulting with me and the kids). While the referral was written for hospice, that didn't happen yesterday, perhaps today. We'll see how it goes.
That morning, I sat with Nathan and he was sad. He commented that we hadn't really even had time to make a bucket list. I had to remind him that there really wasn't anything on our list - and if we were to make it - it would include camping which we did on the night before, being with the kids - which we had been doing for the last two weeks, and lovin' on the grandkids- which we were also doing. Disneyland was closed anyway. He was in agreement that these were pretty special family times.
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Reading bedtime stories together on ZOOM
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Hospice called and said that Dr. Shango's orders had not come in. In order to admit him, they really needed me to call the on-call dr and ask them to FAX them an order. It seemed strange that I had to do that, but I did it. and while they suggested we set the intake appointment for Sunday morning, I had been reminded that if we go on hospice that our Tuesday plans for radiation would need to be adjusted. (We were thinking at this point, that we would use hospice for the weekend back up, and then "change our minds" and go off of hospice on Monday for the taking fluid off and Tuesday's radiation appointment. ) At my annoyed insistence, they set pointment for Saturday evening at 10pm. I suggested they bring a foley catheter too, as Nathan hadn't peed all day.
Text to Fam 3:57 pm- Well, hospice is doing their intake tonight at 10, because I don't want to wait until tomorrow. He's pretty out of it.
And just as I say that he wants to sit in the wheelchair on the back deck.
An entry by Megan - August 8th: (this is way too long, but incredibly healing to actually process through)
The next morning, I was woken by Spencer asking if I could get the kids out of there. I was shocked and hurt and taken off guard. So much conversation had been happening behind closed doors, that I don’t think he understood how in the dark I was about the situation at hand. We were both communicating separately in our own worlds. The world he had been living in was day to day watching his father get weaker and sicker. He was surrounded by doctor visits, notes, discussions that I wasn’t privy to. I was living in my own world as a single mother, trying to log in on zoom visits while simultaneously keeping the house afloat- on top of starting to transition into the next school year and plans for that. When he told me to take the kids and leave, he was saying that he wasn’t sure where this morning was going and he needed to be a full son again. All I heard was, “I’m thinking my dad might die today and I can’t have you here.” I was so desperate to have my own mourning and processing, it felt like a slap to the face. I was so shocked that things could change so quickly, especially seeing him out and about last night. I called my mom, started crying and asked if I could bring the kids to go and stay with them for some time. I packed them up, and Spencer said we should bring the kids to go say goodbye to Grandpa Nathan.
There is no preparation for that moment in your life. How do you tell your four-year-old and two-year-old that this might be the last time they talk to their grandpa? How do you make it a worthy goodbye? I was still crying from earlier, and I couldn’t even look at Nathan properly without falling apart. My goodbye to him was a croaked out “see you soon”. I got in the car, and the tears kept coming.
It was an hour and a half drive to my parents' house, and I cried every second of the trip. My kids were sleeping, so I didn’t feel as bad. My mom and dad were everything I needed. I got long hugs as I came in, and sent upstairs to take a bath. I sobbed silently in the water until I felt like there was nothing more. We then went to Walmart, because the kids only had an overnight supply of clothes and items. My mom left us in the clothes section and went to go get junk food for our special “junk food and movie night” to be had. It was comfort and I was everything I needed.
Spencer called me later that night. We had both gotten things that we needed, relief from some of our stresses. I told him I would come in the morning.
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Nathan Afternoon conversation with Bill. Brother Bill asked Nathan a question today. He asked him how he was. Bill expected an answer of about how the pain medicine was working, or what he was thinking about, or whether the day had been long or such. Nathan's answer was simple. It said it all about how disappointedly angry and resigned he was having to become. His answer simply was "I'm fuckin dying."
Legacy Hospice did come about 9 pm. It took a few hours, to meet with her and to sign papers. Overnight, Nathan developed a lot of jerking. This made one of his middle of the night commode transfers difficult so Spencer came down to help.
Sunday, August 9
Tim and Mary came to visit this morning. Who would have thought that this would be the last day with Nathan. Tim came in telling Nathan that now that he's on all the good drugs, that Nathan could tell him what he really thought of him. Nathan paused and then with a smile told Tim "You're an asshole."
What love of a brother.
They were here most of the morning and then went and bought us sweet corn for lunch from a local farm. Bill and Kathi also came back to the back porch, Megan arrived back from St Helens around noon.
There was a small tender discussion after Tim and Mary left. Nathan turned to me, as we were both sitting on the bed while they were off buying corn. I just sat with him, as he was resting, and thinking and quiet. He turned to me and said. "I'm dying honey, and I can't stop it." "I know," I said, "and it's going to be hard without you here. We'll both have to get good at communicating in new ways. But we'll do ok. We'll do this OK."
Tim and Mary brought us the corn and waived us good-bye. We had it for dinner that night.
Chris arrived from NYC.
After that little talk and lunch, he wanted to come out to the back deck. I reminded him that he had been weak in the middle of the night and that I wasn't sure that was a great plan. But while I was fixing lunch, he was talking to Kacy and she popped into the kitchen.
"Dad wants a swag cloth! What the heck is a 'swag cloth' Mom?"
She had to go back and ask him because I had no idea. It turned out he wanted something to cover himself up with, and with that, Kacy wheeled him in the wheelchair out to visit with Bill on the porch. He had a similar discussion with Bill about not being able to stop dying also. Those were hard moments. We all just did the best we could.
At one point Spencer said, "I feel like there's something we're supposed to be saying, but I feel like we know it already. He loves us fiercely, and I know that. And we love him, and he knows that." The situation was just sucky, and though none of us wanted it, we were doing it.
(An Entry by Megan) - August 9th:
I drove back to Woodburn without the kids, trying not to think about how this might be the longest I’ve been away from them… I got to Woodburn, and Nathan was chipper and visiting with Tim and Mary. I had been terrified that my choked out attempt at a goodbye would be the last thing I said to him. My mom had prepared food, and so we warmed it up for lunch. Kacy and I went to work in the backyard sucking up nuts with a shop vac. I was determined to try and do some things around the house to help our family feel ready for visitors. There would be many people coming to say goodbyes, I thought, as we were going to move to hospice. Backyard visits or through the window visits. I mowed the lawns, swept, mopped, and prepared.
Spencer and I took a walk to the duck pond in the evening. He was warned not to go too far, and I wanted him to feel like he got out of the house for a second and just to breathe. He told me that the hardest part was just the lingering suffering for his dad. He hated every minute that his dad was in pain, embarrassed, and scared. He didn’t like saying it, but he wished that his dad would find peace and have it be over. We came back to the house, and reminisced in the evening. I made silent plans for myself the next day, that I would plan a virtual beach experience for him and Tiersa.
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At 4, the hospice nurse guy came. It was a man that Nathan had trained. Upon seeing Nathan's picture, he just kept saying "I know you! I know that guy! You taught me the things I know! I know you! It was good for Nathan, but he also was getting very tired. The nurse pointed out that he had had very little urine released, that his system was shutting down. Nathan said he needed to go to bed and take a nap. The nurse and I continued our discussion about pain medicine. Spencer was at that appointment as well, Kacy and Thad had run to St Helens to a family gathering but arrived back home around 7.
Also, this afternoon, Bill spent some time sitting in the bedroom with Nathan. He was really groggy, and while Bill didn't really have a discussion or expect one, both of the brothers knew they were together. It was hard for Bill and Kathi to leave, but they told him good-night and that they'd be back.
Aug 9, Text to Family 7:27pm- Hospice nurse was here today. Sounding like this may be a short hospice. Tonight, Nathan's liver and kidneys are no longer working. No urine output in the catheter today, that he got yesterday. He has jerkiness and is shakey- encephalopathy (nervous system issue due to liver failure) and the hospice nurse says that will get worse, as will his confusion. Today he has significantly declined, again as much as he did yesterday. He is "declining" but not yet "transitioning". Blood pressure and lungs are still good right now. Nathan is bed bound- getting up and going anywhere is completely exhausting for him.
I didn't wake Nathan for dinner, he was sleeping well after a hard day, but when Kacy got back from St helens around 9 she climbed up on the bed with him, and we watched some TV. Megan, Joe, Thad, and Spencer watched some old St Helens Play tapes that Joe had found. There were good sounds in the house. It was family time. Shana got tired and Thad took her home. Spencer ultimately got tired too and went to bed.
Kacy asked me at 11, if I was staying awake because she was there. "No, I was keeping the books organized, and just enjoying the TV show with them." Nathan always said he was "watching TV" and most of the time he was sleeping, Tonight was no different. But I seriously could not see us getting up the next day and getting in a car. I could see that night, that we would not be going off of hospice.
How to capture that and let our friends know, we hadn't much time left with him, I decided to put in a quick 8pm Facebook post......
At about 11:30, Megan headed to bed. Kacy and I sat up a little bit longer and then I told her I was headed to bed. She said she decided she would "Go be a good Mom." That is what her dad had always told her "Go be a good Mom" and she knew that Shana would be waking up around 12:30 or 1, so she would be there to help her get back to sleep. I told her I would call her if there were any changes.
I didn't realize that I would hear that change at 2am. Deciding that I was hearing that rattling at every other breath, I didn't call. But by 3 it was with every breath. I called Kacy, woke up Spencer, called Bill to tell him that Nathan's breath was changing. Also had Spencer wake up Megan.
We called Hospice several times during the morning. They gave us good answers and helped us stay calm.
Monday, August 10 7:25am text to family - Still doing the long low breathing gurgles. While his eyebrows are going up and down he doesn't look to be in pain.. Love to you.
Our brother Don texted around 7 and offered to come sit with Nathan. He knew that Nathan loved him and he wanted us both to know that he and Annette would come. I called him at 7:45 and told him we know their love, and that we were ok. The kids and I were with him until he was no longer with us. Just a few minutes later I called my brother back to let him know that I was making "that call" - the call to let him know that he was gone.
Nathan's actual last minutes were looking into Kacy's eyes. He awoke, was agitated, I called for Spencer who was eating the Mcdonalds breakfast that Megan had gone and gotten for everyone. Nathan's eyes were wide. "I love you. I love you." he mouthed. Spencer, Kacy and I told him we loved him. We told him how proud we are of him. We told him we'd be OK. To give everybody a hug for us. We told him the last I love you's. We told him it was time.
Monday, August 10 Text to Family and Facebook post:
Our sweet Nathan left us at 8:22 this morning. Love to you all. ~Tiersa
