JULY, 2020
July 3 - (An entry from Megan) We decided that we needed to head to Nathan and Tiersa’s for a portion of celebration for the Fourth. We were about to need to quarantine after attending my brother’s wedding in Colorado and Nathan was about to go into surgery for his back. I hadn’t seen Nathan in person since early April, and it was a bit shocking to see him so frail and with the weight loss. Corin complained that Nathan was getting behind on his Santa belly. We only got to spend a few hours, in order to not overwhelm Nathan. It was hard leaving him, but Spencer and I were both confident in back surgery. My uncle has had back problems, and while it is a hard life- it was life.
*************************
July 3 - We loved seeing the kids today (but missing Thad). Spencer and his family came for a few hours and we packed it full of as many Fourth of July things as we could. We were going to be back yard barbequing, but it was on the chilly side when they arrived at 10:30 so we played parachute man in the living room, drew chalk on the back deck, and got used to the new play area-now that Grandpa's bed is in the yellow room.
To eat we had: broiled steak strips, Fritos and brown sugar beans cherries that we learned to spit pits, fried dough with all the sugars, and then with a fire in the fireplace we made S'mores and S'moreos. I don't know what more we could have packed into a three-hour visit. It was really special. As Spencer and Megan and kids are headed to her brother's wedding in Colorado next week we don't anticipate we will physically see them for 4 weeks, but they will be in constant contact.
I'm so glad we took this picture.
July 5- COVID drive through test 9:30 am for pre-op. This is expected to be negative and so we will not hear anything unless it comes back positive. We laughed and decided Nathan might as well take a pregnancy test. You know, COVID by Immaculate conception. There was something about that that just jived. We have all been so careful. (TEST RESULTS NEGATIVE)
Tue July 7 - 2:30 Pre-op appt with Surgeon.
 |
| Nathan did his part to bring Oregon numbers down today. |
HERE'S THE PLAN:
Wed July 8 - (no time assigned yet) BACK SURGERY and over night stay.
Thu July 9 - Come home to begin getting better. ALL BETTER FROM HERE ON!!
 |
| Pre-op, the day before surgery |
The ride to and from Tualatin today was extremely painful. Labs done for clotting and typing. A mention today of higher RA factors from the labs done at Dr Yee's. Surgeon suggests we keep eye on that and consider a Rhematologist add in, later.
 |
| Pre-op visit at Dr Ching's |
Wednesday, July 8 (Hospital Day 1)
Today is surgery day. It's time for some positive change!!! The surgery today is a laminectomy at L2-3 and L3-4 which the Surgeon believes will improve the leg and groin pain significantly. We are hopeful.
THE PLAN: Hospital arrival 12:00, Surgery scheduled 2pm. Recovery an hour. See the result of less leg pain 6-8pm. We will look forward to that.
Text to fam 4:45 -
Anesth: "And who is this?"
N: It is my wife Tiersa.
Aneth: (looks perplexed)
Me: Tiersa, like a Tear.
N: It's a difficult one.
Me: The NAME,not the wife!! |
| Awaiting surgery. |
Surgeon's comments after surgery: "He was very pinched in there and now things will flow better!!
It was a snoozy afternoon with good pain medication.
Text to fam, 8pm - "Less pain" sleep looks different than "in pain" sleep. Thank you for joining us on this journey today. Good night everyone. Love you all.
THURSDAY, JULY 10 (Hospital Day 2)-
July 9th - (An entry from Megan) Surgery had happened. It was successful and looked like things were going ok. We were waiting and watching to see if Spencer would stay behind if there were complications, but all systems go. We landed in Colorado, and got texts saying that he was staying another night and they were to focus on his liver and kidneys due to strange levels. We were thinking it was just the amount of pain meds he has been processing. Colorado was hard already- this news was making it harder.
*************************
FRIDAY, JULY 10 (Hospital Day 3)-
So, I haven't spoken very much here about the Creatinine numbers. They found 1.5 in the labs before surgery. The Anesthesiologist and surgeon actually decided to take another set of labs and wait for them before they did the surgery at 2. So here they are sitting waiting for the labs to arrive.
The lab numbers were the same so they headed into surgery. Yesterday (Thu) they were 1.43, headed in the right direction but still there is concern for Nathan's kidneys. His blood pressure has been running very low, his heart rate high at 130.
 |
Nathan's hands are such a different color than his skin, and they shake now and then, disturbingly. |
For that reason, they decided last night to give him a couple units of A+ blood.
(Kacy and I, commenting about what it must feel like to be B-, just not up to the A+s of us all out here!)
Overnight he started running a little fever and it was determined he has a UTI that they gave him IV antibiotics for. He is now working with the hospital LIMBS team. I don't know what that acronym stands for, but it's the hospitalist team that is reviewing his blood work and trying to get on top of all of the little issues. Last night the hospitalist was also concerned for his heart, with the high rate and low pressure, so they may do an echocardiogram today.
All in all, Nathan is in good spirits, complaining about the food, and feels like we're in a good place to do what we need to do. He says he's not going home until he's ready to go home. A good plan. Let's get this all figured out and on top of it!!
Text to fam 5 pm-Nathan is staying another night. Nothing is pressing but while he's here they want to understand how he would benefit by supporting heart, or liver, or kidney. Still awaiting test results. Liver ultrasound scheduled at 8pm While none of these are related to the back surgery, its great that he is here with this team"s set of eyes.
SATURAY, JULY 11 (Hospital Day 4)-
July 11 Facebook Post - This is the big window in this empty hospital waiting room. Nathan's taking a shower and enjoying the services. I decided to sit in here - not touch anything and have an afternoon coffee. Staying another night. Doing some more tests.
(Annoyed) "So here's the thing- they told me I could have 2 eggs and bacon. But did they bring me 2 eggs and bacon?! Did they offer it to me?! No!"
"Here, Nathan, we need to order. I will order for you" (even tho he wanted nothing from the McD big breakfast that I brought him this morning).
"NO. I don't want 2 eggs and bacon! I'm just trying to get to the principal of the thing!"
Honey you are a patient. You don't need to do work right now.
(Random) "They got the sheep to act like sheep."
And he told me earlier that I could use any urinal - that I don't have to use a specific station. (Well,not in another patients room) and has decided he didn't need to be so concerned about managing the diabetes test strips -he had thought there was a hospital shortage, but maybe not so he guess he'd stop trying to manage that.
The liver ultrasound yesterday showed a small spot on the liver and warranted a CT scan today on his liver to find out more about it. Also today, an echocardiogram of the heart.
(An entry from Megan) - It was the day of my brother’s wedding. We spent the morning hanging out at a creek with the kids before the evening ceremony. The day before was just tests and monitoring, so we were cautious but optimistic. Then Spencer got a call from his mom about a mass found on the liver. The word “cancer” was being thrown around…He walked off by himself, and I could see him pacing as they processed information together. It was a surreal moment being surrounded by my family in anticipation of a celebration, and seeing my husband receive news that was to shatter his world. We didn’t have much time to process, because it was off to set up the wedding site, get dressed and celebrate my brother. In the back of our mind, and in hushed side conversation at the reception was the word repeated, “cancer”.
*************************
Text to fam 2pm - Gonna hang out another staycation here at Meridian Park Hospital. Why not, right?
Text to fam 4pm - So Nathan's thinking and talking a lot more like himself . He even thinks he stinks and has asked for a shower! Go Nathan!
SUNDAY, JULY 12 (Hospital Day 5)
Today's news is different about the Liver. Today it is called a mass with potential concern for cancer. We cried. We talked the fear talk, and the pep talk and then we had lunch. That was scary.
July 12 Facebook Post - "I think that there are sore spots on my back that have been for so long, that they just don't know how to be any different" - Nathan Helwig
Text to fam 10:08 - Good morning. While I slept great, Nathan had less sleep than desired. Pain is gut 6-8. One more test scheduled for tomorrow with plan to discharge tomorrow afternoon. He's looking forward to going home. Megan's brother successfully married- They arrive home today.
 |
| Poster child for healthy eating. |
We made a lot of personal phone calls today before sending out texts. I wanted people to hear our fearfilled, but calm, desire to find out what was going on.
Text to fam 2:38 I stepped out while he was sleeping a little bit ago to make a phone call and when he woke up he was really disoriented.texted to ask where I was. I got back here and he said -just me being here makes the room quiet.
Tonight he's on a good mix of meds. We're hoping to get him some good sleep tonight before tomorrow's Biopsy.
July 12 - (An entry from Megan) We were flying back that day, in the morning. The stress of our extremely carsick daughter, the news of the mass, the airplane and rental car, and trying to get back home was hard. No words did justice. Just anticipation. As we sat, waiting for Uncle Don to come pick us up, we got the text “Family, take a breath please. The details today are hard.” Confirmation of questions. But more questions were to come. Don came with our car and gave Spencer a huge wordless hug. We went home and processed. Tiersa offered an option for us to come and stay in the camper in front of the house- we couldn’t go inside of course. What a terrible time to have to do a 14 day quarantine…
*************************
MONDAY, JULY 13 (Hospital Day 6)-
Text to Fam 9:41- Biopsy Test today at 10. Then we'll know what's going on. The kids are in and out of a zoom room so are along for the ride.
Text to Fam 11:00 - Nathan is back from his biopsy. Said it was like bee sting shots.
I asked about the echocardiogram and we found out that the heart is efficient and strong. - but then they wanted to talk more about the cancer (and they are calling it cancer) on the liver.
Text to Fam 2:00 - So now we wait. Told to make an appt with Dr Yee beginning of week. Todays plan is to rest and get pain under control. Maybe go home tomorrow. It is GREAT to have the kids participate in the Dr discussions. They questioned time this has been growing - hr answer "prob over months". How encased aorta affects heart risks this week. Answer: not probable but so close to the heart will likely require aggressive Chemo.
Text to Fam 4:45 - Note to self- sleeping cramped in tight corner wearing mask, on a day like today leads to angry puke panic and unending tear flow. Luckily I have backup and a roommate that puts his arm around me as I cry on his knee while he drifts unaware, really, back off to sleep.
Dang it. Quiet meltdown here.
6:00pm - Ha ha....As a complete random break, Spencer sent me this today. His Animal Crossing game pulled it up randomly. It made me laugh. I am tired. But at least I get to be here every day. I fear Covid might shut me out the next day, each time I leave.
July 13th (An entry from Megan) - Our anniversary. Pictures flooded our timeline of this glorious celebration, with Nathan smack dab in the middle of all of it. We decided to postpone our celebration of our anniversary to a happier time. We still haven’t celebrated…
*************************
TUESDAY, JULY 14 (Hospital Day 7)-
Text to family 10:30am - Good morning everybody. I have enjoyed staying at home for a later morning this morning. Nathan had a good night's sleep and reports there's no new news. I think we have decided for him to stay at the hospital until the biopsy comes back. He gets really good care there and they are not pushing him out. There are bathroom needs and pain needs that they do really well there, that would be hard to do on my own to help at the house.
Text to family 5:30pm - Hi all. (I wanted to explain that I am sending Nathan reports out in a mass mail, but your questions/comments only come to me. If I answer, it will be in a thread between you and me) Pain has been big here again today 7-9 with edema legs. The goal is still to go home before Monday - or keep the Monday outpatient appt w/oncologist. With that goal, staying mobile and able for treatment options.
Text to family 9:45pm- And as I get ready to call it a day and head home to sleep, again I feel like he's getting very good care. While there is a goal, this hospital is very much about meeting the need. Today his urinary and pain needs have him here. I suppose if results come in at the end of the week, they might begin some helpful treatment. Tomorrow a bit of diaresis (getting fluid off] Thanks for you all at my back today. Goodnight.
WEDNESDAY, JULY 15 (Hospital Day 8)
Today we got to change hospital rooms. Literally, this was our little small room, at the time that Nathan was coming back from imaging.
 |
small room |
Text to family - Hurray! I thought I was going home an hour ago, but then we found out we are moving (in a few minutes) to the big room on the corner!! Yay!
Text to family 10:45am It's been an early and very calm morning. The goal today is continuing pain management. He's very clear today in his thinking. Diuretic & Miralax added to the mix. Enjoyed seeing Tim & Mary's garden on zoom this am. Monday's biopsy review feels far away. Doc was in. Goals are strength, nutrition, pain management. Maybe home Sat or Sun. His wife did some fancy lunch ordering while he was asleep.
We had another really fun day on ZOOM. Watching our kids be parents and watching our grandchildren play brings us great joy.
THURSDAY, JULY 16 (Hospital Day 9)
Text to family 9am - Good morning everyone from MPark Hospital. Today things are again calm. Nathan catching some more z.Z.z's. The hospitalist has been here. May start some steroids.
Text to family - 2pm "Note to self"- If ever a chaplain, don't ask if Dr xyz [who can be identified as the oncologist associate] has been "in" yet when a family is awaiting test results.
July 16 - (An entry by Megan) - Big room. Big news. I can’t tell you how powerless it feels to be parted by a screen when earth shattering news is delivered to people you love. Spencer and I were on separate devices, as I was watching the kids and he was trying his best to continue work. The doctors left, and Tiersa wept with Nathan, Kacy wept with Thad. We were in such a weird spot… Spencer and I had decided to be intentional about how we deliver news to Corin. So tears and conversation were had in private. I went in to check on Spencer who was teary eyed but already googling about the proposed cancer. It was not uncommon for both of us to catch the other teary eyed- but the emotions would come.
*************************
Text to family, 12pm - Wow. I suddenly feel a lot of prayer surrounding this family 💓
FRIDAY, JULY 17 (Hospital Day 10)
Text to family, 12pm - Good morning everybody. Don't panic if you don't hear from me for a while. sometimes I'm taking care of me or my family. This morning the girls and I have been working on ways people can help, in order to avoid a tidal wave as word gets out. Nathan is getting some morning rest, as I am at home. I am headed there soon.
Text to family 6pm - Pain is at "6". The Palliative Dr goal is "4" and has adjusted pain patch. He is much more himself. Cracking jokes. Last Monday's Biopsy's back - shows intestinal and we are on the right track. Changes in his eyesight the last few days are taking him to a brain MRI in a bit. Then we'll start cocktailing for the oscopies tomorrow .
Tonight Nathan began drinking 2 cups of "Make Ya Go" at 7 and then it was decided that Nathan would be going up for an MRI of his brain. This was ordered as he has been having trouble with his eyesight. It also could be his trifocals, but they decided to do an MRI to rule that out. As soon as he began drinking it, then the MRI was scheduled for 9. They showed up at 8, and pretty much it was all chaos from there. Discontinued the drinking and then picked it up again at 11. Drank from 11 -3:30 am, when Tiersa left for home.
SATURDAY, JULY 18 (Hospital Day 11)
Colonoscopy and Endoscopy at 8 am so it was a really short night's sleep. Dr had us in immediately after to tell us that there is NOTHING in either of it. Brain scan showed NOTHING. How could it be called a Poorly differentiated Gastro Intestinal Type cancer, if they can't find anything in the gastro or the intestinal places?
Text to family 8am - Good morning. What a romantic evening prepping for the oscopies this morning. I left the hospital at 4, slept fast, and am back feeling pretty good.
Text to family 10am - We just met about the oscopies. They found nothing. Nothing?! While this ruled out many kinds of cancer, this leaves us very perplexed. Will pursue answers from brain MRI. Someone must have those..and maybe some mornin' nappin' is in store.
Text to family 6pm - Brain MRI is completely fine. Haven't gotten my nap yet it is time as I am now home. Put up a Facebook post
Text to family 7pm - Our nurse, Rebecca, just called to tell us good news that Nathan woke up from his long nap, got up and walked around, got a spit bath is sitting up with his dinner and he says his pain is at a "4"!
July 18th FACEBOOK POST :
Okay my friends, take a deep breath.
Last week Nathan was admitted to the hospital for a quick overnight back procedure to help relieve some of the pain he has been feeling since February. Some pre-op bloodwork, however, came back abnormal and while his surgery was successful, we have continued our stay at Meridian Park Hospital. Nathan has had multiple tests, scans, and great teams of doctors looking in many directions. While we do not have all of the answers yet, we wanted you to know that we are on this pretty scary path.
The initial biopsy that was done on Monday has come back as Gastro-Intestinal Malignancy. The cancer is encasing the aorta and IVC (vena cava), is a sizable mass on the liver, and is also behind the right kidney flank area. Additional testing is being done this weekend to help determine the kind, origin, and treatment options. We do not yet know what stage and we don’t yet know much about it. That information will come together in the next week or so.
Outpatient during COVID times has failed us, but we have been very well taken care of in this hospital. These Legacy doctors and nurses are helping us get this figured out! At this time, patients are allowed one single visitor during their stay. Tiersa has carried in the laptop, while Spencer/Megan and Kacy/Thad have Zoom-roomed in and participated in all of the doctor discussions. It has been a strong supportive family time on Zoom, with brothers Bill and Don and good friends popping in for visits.
We have always felt supported by our friends and community. This time is no different. And as you are reading this, you may be wanting to reach out to us and help. For now, we would like you to reach out to us through a new email that we are using as a family (NathanHelwigFamily@gmail.com) for thoughts and well wishes. Nathan is not currently reading his personal email, and this will help us all from feeling overwhelmed with texts and calls on our phones. From here we will be able to read or print out emails for Nathan to be sure that he sees them. We are working on other ways you can support us as well, but we are still in this unknown spot where we do not know what we may need or want yet. We need to tell ya, tho, we’ve got to be COVID resistant! We must keep a very controlled environment for Nathan to come home to. So at this time, we are requesting “No deliveries”. If you would like our families’ postal addresses, drop us an email and we’ll send them to you.
We stand strong. It’s one foot in front of the other from here – and a tough path ahead from our perspective at this point in the road. But, we feel your presence and will post again as we have more information to share with ya’all. Thank you for your love, prayers and support.
The Helwig Family
SUNDAY, JULY 19 (Hospital Day 12)
Text to family 10am - Good Morning. Pain is 4. We are both feeling rested. Today we are going to look at images with the hospitalist.
Hospitalist, Dr. Lorenz shared the images that they had taken both in the hospital and in the past and talked to us about where the Mass was. If it were to need a box, it would be about 9"x6" This is much bigger than Nathan had understood it to be.
Text to family 6:30 pm - Today we have hung out here. The anatomy lesson & seeing MRI's with the doctor were hard. The mass is there and that brings emotions. Tomorrow we will meet with the oncologist.
There has been some misinterpretation of my last text. The mass is only the original one found around his belly and liver. There was nothing found in the brain, upper GI tract, or lower GI tract. We have just never seen any of the images ever taken here and asked to see them today.
 |
| Tomorrow we will meet with the Oncologist. His office is right here, as seen from our room. |
The long walk to get to Nathan each day. 500 steps from ER to Nathan's third floor room. (The main doors closed on weekends) 3/4 of a mile walk!!
Meridian park hospital has to have the most obnoxious layout! .
This morning when I arrived, Nathan was sitting up waiting for me. I brought him Taco Bell breakfast today, instead of Mcdonald's for a change. I wasn't ready for his conversation and I shut him down creatively fast. I'll regret that I did that. I think he probably had things he wanted to say.
"Well, have you decided what you're going to do in your next life after this?"
"Haven't even thought about it. Have you decided what you're going to do in your next life?"
Text to family 10am - This morning we have learned that the oncologist will come see us at lunchtime and we will plan for a discharge tomorrow. Pain level is 5ish.
Text to family 11am - Note to self from Nathan's hospital shower: Rinseable clothing is really handy after "shaking well" an already opened carton of Boost.
Showing off the big room again. We had a great day nurse, Rebecca for many of the days.
Text to family 8:30 pm - With the sundown, we've ended this day with Dave's Famous Ribs that Kacy ordered for pick up from here near the hospital. Not ever convenient to our house. Delicious.
 |
| Zoom with brother-in-law Don |
 |
| Time for some selfies |
Monday, July 20, we met with Dr Yee who came to the hospital room during his lunchtime.
 |
| Tim and Mary came to surprise us with this special sign the morning before we were to go home. |
TUESDAY, JULY 21 (Hospital Day 14)
We met with the Palliative team. Trying to understand their purpose and role. Helping them define to us how they work with the hospital staff. We have not been moved to the Cancer floor. We have remained on this Post- Surgical ward, I think because the nurses and hospitalists have enjoyed working with Nathan.
Text to family 1:30 - Today has been about rest, doubling fentanyl patch (100 to 200) in order to get off of oxy and preparing for the need to move home tonight or tomorrow. Discussions with the kids.
Possible 2nd opinion onc- doc to come in this afternoon or in the morning.
WEDNESDAY, JULY 22 (Hospital Day 15)
We were looking forward to going home. But, on THIS DAY --THE DAY that we were to go home, I walked in in the morning to find Nathan OVERMEDICATED!! This landed him in the ICU for an extra couple of days.
(Inserting Tiersa's blog account of this very difficult and alarming ordeal that came next)
July 22, A TIERSA BLOG ENTRY -
This morning I arrived with Nathan's breakfast burrito. He was sleeping, which was so needed, but also rather unusual, so I let him sleep.
Around 9:45, Elizabeth, the young CNA came in to do vitals. "Nathan, Good morning. It's time to take your vitals" and he didn't respond. So she took his mask off, as if this was something that she would ever need to do, and she set it aside. The fact that he still didn't wake up was alarming to me, but I also was becoming aware that his eyes were not moving. They were tiny tiny pupils and with his mouth still open from the C-PAP, I realized that he wasn't breathing but a breath or two. I told her that he needed his C-PAP. She said "Well, I am not sure I want to put it on him right now, See his nose is so red." The nurse came in - can't remember who pushed the button for her, or if she just came in. Nathan's eyes were still tiny pupils and he had only taken one other breath. I told her he needs his C-PAP, as she put her stethecope to his chest and then her hand to his chest to count breathing. She explained that she needed to count his respiration and as she did this, I went for the C-PAP. I think I only saw five or 6 breaths during that episode before I put his C-PAP back on and he started breathing again.
His eyes still did not respond. My Nathan was not in there.
While Linda, the RN, was more intent on counting breaths, I just was freaking that he was not taking them.
The C-PAP now on, Linda and Elizabeth left.
There I sat.
That, had just happenned.
I had literally saved his life because he was just dying right in front of me without breathing.
I had literally saved his life because he was just dying right in front of me without breathing.
At 10:17 I called the chaplain Maggie. It was the only number I could see and told her I was alone. This awful thing had just happenned, and I needed - we needed, Help! She told me she would call the nurse practitioner and call me right back. And she did at 10:20
Joana, the Paleative Care Nurse practitioner walked in and asked what had happened. I told her that they'd taken off the C-PAP and that he wasn't breathing well. That the nurse had said he had respiration of 10. That I had demanded that the C-PAP go on, but this is where we're at.
She looked at him and said "Um, we need to do Narcan. Yep, I need to call Dr Nachat." She stepped out briefly, but she moved fast. Linda, the RN came in and began charting at the computer. Joana came back and told her that she had spoken with Dr Nachat and that she had ordered a Narcan by nebulizer. Linda told her that she did not know anything about how to do that, that she could administer Narcan but would not be able to do the nebulizer, that perhaps we could get Respitory to come administer that or if Joana could help her find the equipment in the storage room that she could try.
"Yes, I can help you find that," Joana said and they headed to the storage room.
Again I sat alone, watching Nathan breath, looking at his eyes rolling into his head, or barily there as the lids were so heavy. As Joana came back, hooking tubes to a container together, Linda charted for respitory.
By 10:27 when Kathi called me to give me the report on Bill's procedure and ask how things were, I had to tell her that we were in the middle of an incident, that they were hooking up the nebulizer with Narcan and that we had respirations of 10.
"Oh my God!"
I feel like as I write this, the memories of it spins, It just kept coming back to he hadn't been breathing.
He had to have breath. The C-PAP had to go on. And I didn't care a crap about if his nose was red.
Thank God. Thank Lori for instilling in me the fear of not having her C-PAP. It was an inner trust that it would keep him alive - and he had been so very terrifyingly close to dead.
Tonight, I listen to him breath.
Tonight, we are safe in ICU.
I just want him to have a fighting chance...a chance to fight this fucking deal and win some days without pain.
This was too much pain patch. Or too fast. But just too wrong.
It was horribly wrong.
When he learned what happened, his answer through his tears were "They tried to fuckin kill me?" and I calmly had to say - "Just too much pain patch. We're just waiting as it gets out of your system, honey."
It was a terrifying incident.
*************************
Text to family 10:13 Too much pain patch. Been a little scary for me this morning. The pain patch is off now
Text to family 12:45 Ok... I am getting back to calm. The new plan is to continue to clear him of the patch. Spend the night. Start a different pain med instead of the patch. That will start at 10 tonight.
Text to family 5:01pm - Moved to sub ICU for the rest of this morning's incident. Getting that fentanyl out of his system. Good to see him moving his own bed. Talking to me. Understanding may wear this breathing mask a few more hours- actually eating and talking to me now :) Will be staying at the hospital until Friday.
(An entry from Megan) - I logged onto the family zoom session. This was pretty normal for us now, to spend hours on zoom with each other. We would log in and be there as much as we could. This morning was different. Kacy was already on, and Tiersa was in command. Nathan was not rousing. Again, what a powerless feeling to be on the other side of the screen. Our job seemed to be trying to catch the details that those in the room did not. Kacy took notes. Narcan was being administered for an overdose. It was monumentally scary.
Nathan moved to ICU. When he was coming out of it, he thought he was a fish. I heard him weep that he was a fish out of water. Within twenty minutes, he screamed for Tiersa to get out. On screen, we followed Tiersa into the hallway and tried to process her. She stayed close by his ICU room and then, the night, and he ended up really needing that.
*************************
This evening as Nathan became more aware that he was not in a normal room, he wanted to hear the whole story. After I was done, and he had listened he summed it up "So pretty much you saved my life and they almost fuckin' killed me.". It has been a long day. This evening a little bit of tension broke when he decided to flip an orange rubber tourniquet at me, and being that there were about 6 of them, we had quite a little playful rubber tourniquet fight, while Kacy watched over us on Zoom. Those playful things came home with us and have become famous as a part of the Pizza Lady Delivery costume on August 7th. But for this day, they were stress releasing craziness.
THURSDAY, JULY 23 (Hospital Day 16) ,
Text to family, 9am - It was a pretty decent night. I stayed on a cot here at the hospital after evening fears and tears that he was becoming a fish and they were going to put him in a tank. Has not yet started the methadone but will today. I updated the oregonsuperhero.blogspot regarding what happened yesterday.
We were in ICU that morning and moved to Floor 1 for an overnight stay.
 |
| Sleeping in ICU that night. |
Text to family 2pm - New medication is working well- guess what? His pain has been 1-3 all day!
Possible 2nd opinion onc- doc to come in this afternoon or in the morning.FRIDAY, JULY 24 (Hospital Day 16)
We left this room and we came home! Done with this 16 Day Hospital stay! Time to see the kids for real! NATHAN IS HOME!!
Sat July 25 - Good morning All. That was a hard night, but I guess pretty smooth for a transition. Pain. Poop. New ways because we're at home. But a fairly good night nurse, if I might say so myself. (even if she is drinking lots of coffee this morning and considering chain-smoking) :)
Sun July 26 , Text to family - 10am Happy Sunday everybody. We are getting into routines here at the house. It was a calmer day, evening and night last night. Spegan & kids are coming this afternoon to visit. We currently have one second opinion on Thursday and hope to add one or two more this week. No decisions have been made. We are still just processing the whole idea.
(An entry from Megan) We were finally off quarantine and Nathan was home. We were coming for a visit! Kids were ready to see Grandpa. I had the conversation with Corin on one of our walks about cancer. It was divinely timed with all of our conversation about the Covid virus. Osmosis Jones turned out to be a great visualization of how the “white guys” (white blood cells) and green guys (germs, virus, foreign entities) were always at war. These green guys had created a whole house in Grandpa’s body! The white guys were working hard but needed back up.
It was so hard to watch Nathan battle against his own body that day. When Corin asked if he would go on a walk to a gazebo with him, Nathan swallowed hard and said that he couldn’t get that far. Lots of those hard swallows throughout the day.
Before we left, Nathan fell. He misjudged the step and fell hard. Spencer was there to help. As we traveled home, we had a conversation that maybe Spencer should come and stay with Tiersa and Nathan for a while to be that extra helper. Spencer went the next day. For the next two weeks, it was just me and the kids.
*************************
Mon. July 27 Text to family 2pm - Good visit with our nurse practitioner this morning. Blood panels for today. Setting up appointments for this week. We are falling more in sync with how things work here at home. Pain has been 3-4-5.
July 28 Lab day.
Text to Family 9:45 Good morning. Nathan shower complete. Today Tiersa massage and dog nails. Primary Dr. Okunz video apt tomorrow. Second opinions on Th (Tualatin) F (Good Sam).
Pain staying at 2, 3, and 4
July 29.- Back to Dr. Mirchandani for a Lidocaine shot - preparing for the Nerve block to come. Kacy drove us.
Thursday, July 30
Text to family 8:30- Good M. Today is spine block prep -1 of 2 lidocaine shots before a lumbar medial branch block injection to stop tailbone pain. Both oncology-2nd opinion appts are tomorrow. Nathan's pain numbers either 2-4 or 7-9 with back spasms. Spencer spending time here is great. Kacy is the best wingman.
We met with Dr. Shango at Compass for the first time. She was impressive with her information and explained things very well. We all really liked her and the building and parking area, even the front desk of Compass was impressive. I felt like they saw us from the moment we walked in. She took on Nathan's case with gusto and by Friday she had appointments set up with the radiologist, nutritionist, genetics counselor and lab. Yes, she knew she was a second opinion, but she took Nathan's case on and owned it, while asking along the way if she could. She is young, and upon review of the Facebook Compass page, I found that she had only begun at Compass a few days prior. With her mask on, she was so impressive. Without it, her Facebook picture makes her look 15 yrs old!! But being new, I do not imagine that she has many patients.
Maryann Shango, MD joined Compass Oncology on July 23. I guess she didn't have many patients yet.
Dr. Shango was drawn to the field of oncology by the desire to shepherd patients and their families through the overwhelming and life-changing diagnosis of cancer. She is grateful to be part of the evolution of cancer care and values most collaborating with her patients to develop a treatment plan congruent with their values and goals. |
Friday, July 31 - A zoom all with Dr. Pandey at Good Sam. Same office as a doctor of one from Megan's parents' church. (His Dr wasn't available) Dr. Pandey pretty much told us the same things as Dr. Shango, She is a breast cancer specialist, however. When she asked to continue to set up treatment we told her that we had Dr. Yee and Dr. Shango contacts as well, and thanked her for her time and compassionate visit. Nathan will now have to decide which Dr to go with. JULY 31- A TIERSA BLOG ENTRY - titled "WHO I WANT TO BE" The other day I had another scare with Nathan. He was sitting on his walker and I was luckily standing beside him, and he all of a sudden had an arched back and his eyes opened really wide. His pupils went large and I don't think he would have answered had I spoken to him. I yelled for Kacy to come from the living room and she came running. Her dad started moving back into a normal posture and that was it. All was ok.. I asked him, "What was that?" as if he would have known or seen it, - I am so used to him being able to help me figure stuff out. His answer was that it had been a back spasm. I have to stop this panic. This fear that he's dying right in front of me and that I can't do anything about it - or that maybe I can. I have to know that I can't and won't be able to stop it. It's going to happen at some point. It's just part of this. He has signed a DNR, He has decided not to have the heroics. That also means me. I, instead, really need to look at who I want to be - and practice. "I'm right here. We'll get through this. You're safe. I love you." I don't want him dying with me screaming for someone, or panicked to save him. I can do this better. I can ride this Soaring California Ride. I am brave enough. ************************** Text to family 12:30 We have had a quality visit with the dr at Compass Onc. and this afternoon's visit will be virtual with a Good Sam Dr... We are planning a discussion/debrief with the kids tonight. Text to family 9:15 Two oncologists with the same info. So, hard. Chemo at this point may be damaging to the quality of life. Dr. Shango is looking into radiation and both Drs said this is a rare case to take to the Tumor Board next week. Genetic sequencing study of the cells still not back which might pinpoint more. Tomorrow Home PT is expected. Text to family 9:18 All in all -this sucks. I'm tired. The family did amazing hard stuff today. ~Tiersa |