This morning Lydia loaded up her Grandma Diane at 0700 for a planned trip to Good Sam. Diane’s getting an MRI as a step to identify the reason for her constant headaches. I’m sure I’ve mentioned that previously. She had to be there by 0815. They left home with an almost empty tank of OXY. I stayed home to order replacement tanks. O was told that they could provide 15 tanks and I told them to bring ’em. I was also told that she could swap her empty tank at Good Sam for a full one.
While she’s at home she has a plug-in unit that makes oxygen all the time and it haa an adapter connected to her CPAP machine. That’s handy. So, after the tanks are delievered we should be able to drive to the beach and back a couple of time. I know Diane would like that, but that’s an unlikely trip at this stage of our battle.
It’s 0945 now and they are on the way home so I better get busy and straighten things up a little.
Finally! It’s Friday and Jennie took Diane to see her doctor to find out what she’s facing. This is where you should hear a drum roll, right? Well, that didn’t happen.
They got to the doctor in plenty of time but the biopsy wasn’t there, yet. So close to an answer but there wasn’t one.
But, the doctor began working on a solution to Diane’s headache issue and a new one that just popped up yesterday: she has numbness in her lower left jaw. The doctor found suspicious bumps on Diane’s forehead so ordered up an MRI with the hope it could be done today, like right away, then he left for a meeting with another doctor about something. While he was gone the biopsy appeared and the MRI was scheduled for next Monday.
When the doctor returned, he read the biopsy report and relayed that there’s more to come on that bit of news. He did, however, let our girls know that what he saw was not all bad news. Considering all the negative info we’ve received to this point, that was actually good news.
Then they came back home.
Crafty Jennifer got on her phone and started dissecting the info she found in the report provided so far. She explained it to me and Jeff but it was tricky territory with a lot of big confusing words that only she could understand. It was still mostly confusing when she switched the big words with normal ones.
I’ll do my best to share what I think I understand with the understanding that I’ve got a lot to learn about cancer and the language and terms used to describe it. OK?
The purpose of the biopsy was to discover the point of origin. As best as Jennie could tell, it looks like they were unable to determine the specific origin so gave it an acronym name. Digging further, Jennie went on to cancer defined in that manner is very rare and could have laid dormant in her body for decades before waking up. This bit of knowledge swiveled our heads back to 1977 when cancer visited Diane the first time. That one was believed to have been completely eradicated when they pretty much removed all her girl parts. Maybe they didn’t.
So now, we wait some more until Diane’s doctor receives all the info about what’s going on. During that waiting period she’ll have her MRI and the Doc will analyze it.
The really sad part about all this waiting is that she’s suffering a great deal of pain and can hardly eat anything without severe nausea. The battle continues with no defined plan about how to win.
So, if you pray, please add Diane to your list. We can use all the help we can get.
If you have a notion, send her a few words of encouragement by responding to this post. She reads it.
It’s been a rough couple of days for Diane, just like all the other days she’s spent waiting to learn what the next steps will be on this journey. This morning is a little different, though, because on her trip from bed to chair she mentioned that oatmeal sounds good for breakfast. That’s amazing because all she’s eaten for the past month, or so, is a few spoons of yogurt and a random half egg.
Regarding eggs, I’ve tricked her a few times. When she asks for one egg, I’ll whip up 3 of them and make an omelet that we share. Then I fudge her half to make it a little more than 1.5. Sometimes she eats the whole half, but most of the time I wind up eating most of it. But, it works once in a while.
Today she’s still dealing with the pain caused by the biopsy session. The nausea is also an issue. She has pills for all of that. We’ll both be very happy when tomorrow gets here so we can get some answers.
Until then, we’ll sit in our chairs and watch TV. The kids show up randomly which is good.
We made it through the weekend ok, but it wasn’t as good as the days she spent in the hospital. Being surrounded by busy nurses, day and night, has its advantages over a tired old man. Honestly, the tired old man has the unselfish help of his children to make the right choices, or to do the tasks for him.
Mostly, my job was to ensure Diane got oxygen when she needs it and feed her when she gets hungry. Since she‘s eating like a sparrow, it’s a pretty simple job. consequently, since she’s eating less, so do I.
This morning Jennifer showed up right at 7am to transport her Mom to Good Sam for the biopsy procedure. That left me, all alone, with a list of things to do while alone. Not one of the items on my list referred to me taking a nap, but that’s what I did.
Normally, I take directions pretty well, but my head isn’t working very well lately.
For this day I only forgot to do two things – replace light bulbs in the bathroom and give Max a bath. Not so bad, right. Sadly, those are the only things on my list so it was a total failure. My only defense is that I had a few other things on my mind.
Jeff came to the house and cleaned out the gutters that have needed attention for a few years. That is another thing that was on a list, once upon a time. Now it’s done. That just goes to show you that if you wait long enough, things get done.
Jennifer returned Diane home early afternoon. She was still a little under the influence of the fentanyl that was used to sedate her for the procedure. They made 4 holes in her abdomen to get the samples they needed. It’s our understanding that the biopsy results will be revealed by her doctor when she visits him next Friday.
There’s a little turmoil regarding Diane’s visit to Good Sam. Today was the day she was supposed to see her primary care, Dr. Ly, and I think she did, but she changed her annual visit from today to next week. I suspect that’s so he can address the results of her liver biopsy scheduled for next Tuesday.
Before I get too deep into this narrative I need to tell you that what I share is strictly here-say because I don’t spend a lot of time in the room with Diane. That’s not because I don’t want to be there, but because I actually have things to take care of at home. That’s mainly Max oriented.
Speaking of Max … he’s really depressed that Diane isn’t home every day. That’s not normal. He likes ‘normal’.
Jennie took some things to her Mom early this morning and has been with her all day. She’s totally involved with what’s happening with her Mom so if you want the real story, talk to her. She called a while ago to let me know that she wouldn’t be coming home this afternoon as planned (yesterday) because of decisions/suggestions made by the physical therapist(s) she visited. Mainly, she is not to be left alone, ever, and she needs a hospital bed that doesn’t lay flat. This is because of the cancer intrusion into her spine and pelvis. Being alone is a danger because if she falls, something’s going to break.
Normally you’d think Good Old Jerrie could serve that purpose, but because I fall on my face once in a while, I’m not a good candidate to address her needs. I understand.
So, they are keeping her in the hospital until arrangements can be made for her home care team to be identified. Our lives have been changed with the introduction of cancer into our lives.
That brings another thought to my mind. Diane has already had, and beat, cancer about 50 years ago when she had cervical, and uterine cancer. She beat cancer then and has no doubt about beating it again this time.
Your prayers will help. Let’s work to get her home and Max out of his slump. He’s so sad.
I stripped the bed and washed the sheets in anticipation of Diane’s homecoming today before Jennie called to let me know that’s not gonna happen. Max was listening and got really upset.
Because of Max’s exuberant nature, Diane needs to gather all her strength to deal with his welcome home mode. Should be exciting.
8 – number of days remaining until the liver biopsy.
Today is October 4th, so May The Fourth Be With You, My last post, on September 27th, was a little bit optimistic regarding Diane’s energy level, but playing the “Waiting Game” has proven to be a real downer. Her energy levels quickly evaporated while doing the laundry and it’s evident that I need to take the reins regarding that. All she will have to do is “point” and “direct”. One would think I could follow simple rules, right? Well, doing laundry is way more complicated than picking some random dial settings and adding soap to the machine. Consequently, my job shifted from washing to drying and folding. I’m pretty good at that. All I have to do is remember to check the drying once in a while;
Now, about the waiting part . . .
Frankly, it sucks, big time. Diane said the scheduler told her he needed to carve out a 5-hour slot for the procedure. The first one available was on October 14. The reason for the 5 hours is unclear to me but is apparently needed in the event Diane hemorrhages if she moves too much after the procedure. That’s all I know. Then, there’s something about the need for her to set aside some of her extra blood in case that happens,
It’s entirely possible that I know nothing about that which I report. Yeah, that’s more likely to be true. So, let’s presume that I know nothing. I suspect the majority of those who read this already have that presumption. That’s OK. I even encourage that.
Today was a milestone of note for Diane. She ate an entire hamburger! Honest. she also ate some french fries. If she can repeat that fairly often, she will improve quickly and work on beating some odds. That doesn’t surprise me at all because she’s already said, “We’ll beat this!”. We’re working on that.
Diane slept through the night and woke up hungry. That made me happy. But, she woke up before me, probably by a couple of hours.
I made us a 4-egg omelette littered with bacon bits. I got some of it to look a little bit like an omelette until I tried to turn it over and it quickly turned in part of an omelette and the rest was just a scrambled eggs. Thankfully she thought it was good, so I was happy. It was the first real food she’d eaten in about 3 days. Me, too, in a way. I’ve been eating Cheerios because they’re easy to fix. Oh, I think I had oatmeal somewhere in there. I think it was pretty good, too.
Diane received a call from Dr. McKenzie this morning, I think. She probably told me what it was about, but her explanation was in Latin so I’m not sure what it meant. I can say, that she’s perked up awesomely. I think she’s almost ready for a trip to the beach but I’m not going to suggest it. She’ll let me know when she’s ready.
After a short nap Diane got up and got busy with her laundry. I’m out of underwear and I embarrass her when we go out into the world. So, for the rest of the day I’ll sit in my chair while she gets things done. BTW, all this activity on her part was self inflicted. She said the doc told her to slowly get active so “slowly” to her involves laundry. I’ll check in later to see how it went.
Today’s the day. I’m alone in the surgery waiting room, waiting for my turn to go sit with Diane while she waits in another room down the hallway. Jennie is with her right now. What we’re all waiting for is 1500, when the surgery is supposed to happen. Right now it’s 1300, so we have two hours to go before the procedure begins.
We left the house at 1100. Jennie drove Mom’s car because Diane doesn’t really trust me much on the road any more. I suggested she might consider having my driver’s license revoked although I do come in handy for making short trips to a store for various reasons. Other than that, my usefulness regarding transportation is about zero since Diane does it all.
On our last trip she piloted the pickup everywhere we went. All I had to do was park it when we arrived, unhook the trailer when we stopped for multiple days, and hook it back up again when it was time to leave. Since we decided to sell the trailer, that means the truck can go, too. Then all she has to do is figure out how to drive the bus.
I’m really not alone in the waiting room. There are other folks scattered around the room, but we don’t talk. That’s OK. Talking to strangers isn’t what interests me at this time.
Since I’m under strict orders to mind my diet, I chose to go eat lunch around 1500. Jennie will join me after Diane takes Diane to the operating room. By the time she got to me, I was done eating, so I just kept her company while she ate her soup. It was pretty hot stuff and she burned various parts of her mouth by testing it to see if it was ready to eat. She finally got it down. Then we mosied beach to the original waiting room to await the end of surgery and recovery. I sent Jennie in to be with her in recovery but I was tricked when she asked for my presence. I was happy to go because I had seen for only a few minutes this day and I missed her.
She was way perkier that I thought she would be. Surgery isn’t one of her favorite activities. She reminded me that anesthesia is what scares her the most, not the actual surgery. That’s a story for another time.
She improved quickly and successfully peed for the nurse. That was the goal for getting out of the hospital. Once that was done I helped her get dressed for her exit, then we headed home. The nurse called the parking valet so he could get the car to the front door so we wouldn’t have to wait. The recovery room crew told me everyone leaves that area in a wheelchair, but she failed to include the part about “patients only.” They didn’t bring me one so I had to walk.
Jennie drove us safely home and Max was ecstatic to see her. Surprisingly, he was gentle with her.
She didn’t stay up long after getting home and Jennie need to gather up her children and get them home. Then it was just me and Diane. I was so very happy she got to come home, as was she.
After she went to bed, around 1900 or so, I stayed up a little longer hoping she would go right to sleep. I don’t know what time it was, but at was ready for bed when I finally called it.
Apparently she went right to sleep because she left a bunch of lights on. I should have checked sooner, right?
For the past 5 years or so Diane has been dealing with what she calls “polka dot lungs”. That’s what all of the CAT scan images she’s seen look like to her, so that name sticks. Her doctor kept putting off biopsy’s because it didin’t appear that the polka dots weren’t getting bigger and the danger of performing a biopsy wasn’t justified because of the biggest one’s position, just behind her heart.
The we took our trip round Oregon which essentially ended in Fossil, Oregon where she visited the Emergency Room for what appeared to be a bad kidney infection. She was treated for that with a dose or antibacterial meds that seemed to take care of it. Briefly.
When we got home on September 18th, she was able to see her doctor who ordered a CAT Scan with Contrast. Doing this opened a more specific world for the polka dots. Turns out they were spots of metastasized cancer from a tumor on her left ureter, we think. The PET Scan may reveal a different source. Regardless, it’s cancer, and she’s littered with it.
This morning, at 0945 we checked Diane in to the Nuclear Imaging department of Good Sam Hospital. This is something she’s been striving to get for a while now. She saw her urologist a few days ago and received conflicting info on what needs to be done.
She was originally scheduled to have a PET Scan today but after the doctor met with her he thought the next step was to give her a stent in her left ureter next to the kidney to stop the severe pain she’s been experiencing. But, the PET Scan was never cancelled so we acted on the knowledge we had. No followup info was provided regarding the stent surgery until she was taken to perform the PET Scan. It was the right choice as her doctor spoke to her on her way to the test then came back and talked with me. Turns out they had hopes to piggy back the stent surgery after the PET Scan today but instead they will do it tomorrow afternoon.
As I type, she is getting the PET Scan done and it’s supposed to take about an hour. Then, there’s another 30-minute part that has a name I cannot remember.
1050 – The first hour of the PET Scan is over and I’ve not heard anything from the nurses so I’m putting this away until I get some news.
Diane finally finished around noonish so we could go home. She was in a lot of pain and hadn’t eaten anything since yesterday,
I fixed us two can’s of soup; vegetable beef for me, and chicken noodle for her, I ate all of mine, she barely touched her’s. She did eat a yogurt which pleased me because she needed something for her stomach to churn on.
It’s now 2130 and she still hasn’t eaten anything but that yogurt. Neither of us can wait for tomorrow so she can get the stent installed and make the pain stop. I’m helpless with this and cannot tell you how brave she is to tolerate the pain knowing what’s causing it.
I’m stopping here. Pray for her surgery tomorrow to be a success,
Up early due to inability to sleep due to the fact that Diane was unable to sleep due to her damaged back. That sounds complicated, I know, but it really isn’t. Her back isn’t damaged in the normal way because she didn’t fall down. It seems to be related to the medicine she received in Fossil, Oregon that was supposed to help with a bacterial infection she sprung up with. For a while she thought it was just back pain from doing something strenuous. The meds helped for a bit but we were both fooled by her uncanny ability to tolerate pain at a level only professional atheletes can endure and still function quite normally.
She seemed to be getting better as we get closer to home, but her “tough guy” attitude failed causing her to pick a wiser solution that ended with us terminating our last night in The Dalles. Instead, we packed up all our doodads, bit our farewells to Cliff, Susie. Terry, and Carolann and hit the freeway.
You may recognize that his is the first mention of Terry, and Carolann because our traveling partners to this point were Cliff and Susie. Terry, and Carolann joined us in The Dalles to join us in our triumphant re-entry into the Gresham area before venturing on home to St. Helens.
Before leaving last Wednesday morning, I took a long walk with Max, around the parking lot we were using for an RV Park. He was a little confused because he was expecting us to spend one more day on road. I don’t know why he was upset because all he does when we’re driving is sleep.
Diane did ALL of the driving on this trip. She insisted and I wasn’t inclined to argue about it. My job was to get the trailer parked at every RV Park we visited. She did all the rest, and she did it in an excellent manner.
It was good to get home, even though we enjoyed the trip. We made more memories, and none of them were the result of me falling on my face again. The last time that happened was on August 30th. Since then all the wounds healed, the scabs all fell off, and I didn’t even get a small bruise from the trama I suffered. I found that lack of bruising to be unfair. Most people who take a blow to the nose usually get black eyes. Not me. I attribute that to the fact that I have O+ blood. I’m pretty sure I shared this photo already but it’s worth another look.
Once home, Diane got to talk with Dr. Ly, her favorite, and he started her on a path that ultimately led us to the emergency room at Good Sam Hospital. They poked and prodded her, took anothe Cat Scan and ordered more internal pictures for them to study.
There’s one more trip to the hospital next week for the additional internal photos before they can identify what’s going on. They sent us home with a script for Oxy (which she won’t take), and something else for something I can’t pronounce.
My job, until next week, is to keep her from going crazy with laundry, emptying the trailer, and getting everything off all the counters and tables – all the stuff I brought in from the trailer. I got it pretty much emptied yesterday. It wasn’t her choice for me to scatter the stuff all over the house, but I was resolute to keep her from interfering with my methods of dispursing all the bags I filled. There’s a bunch of stuff I left on the patio, and even more that I added to the overflowing garage.
Temporary Sanity ... 