****UPDATE 5:05 pm****
Mom's regular oncologist just reported that the trajectory of her disease is right on target. Then he looked at her and said, "You're going to be cured, for sure."
Thank you for your continued prayers and support. For the doctor to come right out and say that left us very overwhelmed.
Over the weekend, Mom had several visitors. Haley and Cory came and played Scattergories with Toni and her. Ask Mom or Cory about city names next time you talk to one of them. Kurt and Toni brought dinner last night, and they played Jokers and Marbles.
After today, Mom has 7 more chemo treatments. I just learned today that she's still getting chemo in a pill form as well as the drip. Not sure how I missed that; maybe selective hearing again. Her oncologist was out of town last week, but he should be back today. Mom's got a rash that's started coming up on her chest and back, so they're keeping an eye on that. Her hemoglobin had also gotten low, so she got another transfusion yesterday. That number was back up this morning, and she feels better.
I think I mentioned before that we've colored some pictures and hung them up around her room. People have asked if her grandchildren have been coloring her pictures, and they're surprised to hear that no, in fact, it is her 50+ year old daughters. We also hung up several bible verses, and every card is displayed, making it a bit more cheerful and encouraging.
Her diet has sodium and sugar restrictions, and she's really tired of the hospital dinners. Breakfasts and lunches are not as much an issue. She started a list of foods she wants to ask her dietitian about having: boiled okra, grilled chicken tenders, baked potato, sweet potatoes, Brussels sprouts (although, she has already scratched these from the list) If the others are approved, and the hospital can't provide them, we'll start bringing her "sides" soon.
IV pole names used: Saturday: Ivy Bagley; Sunday: Bing; Monday: C3poleO; today: Cletus
> Incremental improvements in blood work
> good EKG results
> fatigue
Yesterday's IV pole name was Gwendolyn. Today, it's Clytemnestra.
Funny story, since the first day she's been in room 145, there has been a short kind of hallelujah chime going off every few hours throughout the day. Never really at the same time each day, but coming from behind the couch, very short and very mysterious. At first, we thought it was some sort of signal that visiting hours were over, or maybe even a ghost. We settled on the idea that it had something to do with the hospital. Nope. Last evening, while she was looking at her iPad, it went off again, and Mom realized it was a notification from her Bible study app. Mystery solved!
Well, I guess no news is good news. Everything is still status quo. Incremental improvements in blood work, good EKG results, no side effects from chemo besides fatigue. She has 13 more treatments to go. From day to day, Mom's energy level varies, but she's really good at power napping, even though she'll rarely take one. Eddie came by again yesterday. We all played a round of electronic Yahtzee, and he decided Mom should be awarded a "Chemo Brain Handicap." She got 25 points added to her total, which did not help much. Mom says it's not the chemo, but the Yahtzee game that's the problem. The buttons are pretty tiny and confusing.
She Face Timed with her sewing group today during a birthday lunch they were having, and they passed her around the table. It will be quite a celebration when they can all get together for lunch again.
The last couple days' IV pole names have been Slim Jim and Shakespeare. Today, it's Finn.
We continue to carry many things into Mom's room each day, and very little out. It's starting to look like a hoarder's apartment. Okay, not that bad, but she definitely wants for nothing....well, except for healing. Blood work continues to show improvement. EKG looks good. Mom feels really good today with less fatigue than she had after the first couple of treatments. She was also super excited to get her hair cut today. (thanks, Tammie!!!) She had several visitors over the weekend and 5 or so today, which makes the hours go by a little quicker. After today, she has 15 more treatments.
Please continue praying. We appreciate you.
Thank you for your prayers.
No news today. An oncologist covering for her regular doctor came by earlier to let her know they're going to continue the current plan, because her numbers continue to improve. The hospitalist came in to listen to Mom's heart and lungs. Everything was good. Other than the techs checking her vitals every couple of hours, nothing else is really going on. It's a slow, restful Saturday. Chemo will be administered this evening. IV pole today is Dancer. Emily's in town for a visit, and of course, they're discussing quilting.
1:00 pm
Oncologist came in, sat down, and chilled for a few minutes. What a difference from the first few days! I think he finally gets us. He looked through mom's blood work on his phone and was very pleased with all all all of her numbers. He almost said he was optimistic, but caught himself and smiled. We said, "cautiously optimistic?" He nodded then. We asked about what kind of side effects Mom might start having in the next few days. He said that since she came in to the hospital before she was symptomatic, her side effects might be minimal. Mom's preparing herself anyway, just in case. She had her EKG shortly afterward, and it was normal.
12:00 pm
Oncologist hasn't been in yet today. We'll update afterward, if there's news.
Chemo treatment last night went without a hitch. No reactions. The nurse did say today that it might take a few days, but she will definitely have some rough days. There's no way to tell which effects she'll feel until they happen. For 20 days (19 now), she'll start the treatment every evening at about the same time, which is between 6 and 7 pm. IV pole name today is Elvis. Masks might be required during visits soon. Visitors might be limited at some point, too, but we haven't been told that yet.
She's still quilting and hanging out and feeling great. Really loving the cards, texts, calls, and visits!
We caught Lewis rubbing her feet this morning.
***Please Pray Now***
6:30 pm They just started her chemo drip. We're watching the first twenty minutes closely for any reactions she might have during that time. She'll be finished by about 10 pm. Today, her IV pole is named Tykephus (thanks to her grandson, Cory, for that ridiculousness). She had to walk around the pole to get untangled a minute ago, and I said, "just like dancing." She said, "Let's not call it pole dancing."
Noted.
4:45 pm The hospital cardiologist visited today, and will coordinate with her regular cardiologist. She continues to receive a steroid and antibiotics daily. Her oncologist visited, they put her PICC line in, and the chemo drip will start around 5 pm. She's being given an anti-nausea medication beforehand. She's feeling great right now, and ready to get it started. Once the chemo starts, it will take about 3 hours to complete. She'll get it every day, unless the her oncologist decides to adjust it.
She and Toni have been quilting and embroidering today. Eddie stopped by with several hand-held electronic Yahtzee games; truly enough for a tournament. He's looking forward to some competition, but we have to get used to all the buttons first. I wouldn't be surprised if he showed up with a white board for results or bracket next time.
Don't know about you, but I have selective hearing, sooooo:
***CORRECTIONS***
The pill Mom was given initially is, in fact, a type of chemo.
The drip she will start on Thursday or Friday is, in fact, a chemo treatment.
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The oncologist hasn't been here yet today, but he came in again around 6:15 pm yesterday after he had already been here in the morning. Besides Lewis, Toni, and me, Rick and Cory were also here. The doctor spent time talking about what he's doing for Mom now, and the plan going forward. Medical processes are hard for me to understand (even when I take notes), so I'll do my best. One of her numbers (no idea which) started out at about 17, and is down around 1, which was the goal before they would start the drip. The doctor doesn't understand why Mom doesn't feel sick, doesn't look sick, and isn't in bed all day. The treatment right now is a pill she takes four of in the morning, and three at night. The drip treatment, obviously, will come through the IV. The side effects are different from those of other chemos. She won't lose her hair, for one. She said now she needs a hair cut. Generally, feeling ill is expected, and she'll be monitored by a cardiologist, as well. Rather than bringing her way far down in order to build her up, this treatment fixes as it goes. The doctor will make adjustments daily, depending on her blood work; she has blood drawn every morning around 4:30. This means she might feel crappy one day and good the next. He said it will be a hard and bumpy road. Sounds like the Canadian highway we traveled together in August.
Mom is so grateful for the visits and gifts and cards and texts and phone calls. She stays very busy all day. In fact, we made signs to hang on her door each time she leaves her room (on a walk, on the patio, in the family room), because nurses have had to track her down already. We call her a flight risk, so there's a sign for that, also. There are loads of clock-burning activities, snacks, and clothing accumulating. We've joked that we'll need a moving van to get all of the stuff we've brought out of here. Today, she's going through the many many pictures she has taken of quilts she's made through the years. She'll put them in photo books once they're in order. Toni's helping with that.
Please continue praying.
12:30pm The oncologist visited a few minutes ago. Mom's lungs sounded good. She'll get a another dose of the steroid, and he's most likely going to start her on the non-chemo treatment Thursday.
We got her Spotify set up, so she's working on adding artists and playlists. Right now, we're listening to some classic hymns (contemporary worship is "too yell-y"), but earlier we heard Don Williams and George Strait.
***UPDATE*** new room, #145***
5:00pm Good news. The oncologist just came in. They had done a chest xray this morning because of the shortness of breath, and it came back clear. She'll get a steroid to help relieve that symptom. She's almost reached the blood level (coagulopothy) the doctor has been working her toward, so initially, he'll start her on a non-chemo type treatment in the next couple of days.
2:30pm ish Well, it's mid afternoon and the oncologist hasn't come yet. The hospitalist did come to give blood results. Her hemoglobin is better again today, and they temporarily took her off the fluid drip so the water pill will relieve some swelling. Therefore, the IV pole, who is named Lancelot today, sits lonely as a wallflower by the door. (Continue texting me with name ideas.) She's also experiencing a little shortness of breath from time to time.
She is setting up a daily routine which includes making her bed, quiet time, reading, and walking. The outside courtyard by her room has been reopened, so she plans to sit out there in the mornings with her coffee. She feels really well right now, and her spirits are up, thanks in part to all of you. Lewis is with her everyday, most of the day.
Donna and Parker visited last evening and brought her a huge basket of goodies including snacks, Dublin DP, a roller massager, a popper (which she used for quite a while and learned how addictive they are), games, and several other things. Even the basket itself is pretty great. But them being here was the best thing. Kurt was able to stop by on his way out of town for the week. Matt came with dinner after work, and tried to entertain with his five or six jokes. You know them.
Today, Bob, Donna, and Diane visited for a while. It was fun to sit in the family room and talk about all sorts of things. Somehow, we got to telling stories about wild animals in and around our houses. Squirrels and raccoons in chimneys, rats eating fruit on the kitchen island, possums in the backyard, and mice everywhere; using vacuums to get them out of pipes, etc. You probably have some stories of your own running through your mind right now. Share them in the comments or text them to mom!
Mom super appreciates everyone's love and prayers. (so do we) Please continue.
The medical updates we post here are nearly word-for-word from the doctors and nurses. I admit I am prone to embellish, so I have to be careful not to add anything. She didn't have any reactions or complications with yesterday's infusion, and her blood work today showed some improvement. She continues to receive IV fluids, which helps protect her kidneys. She has some swelling in her feet and ankles, but that's normal with the fluids. Walking has been and will continue to be a priority. They also moved her to a bigger room (#159). It is much more accommodating. It's also got a big, pretty fish tank right outside her door. She and Lewis played some dominoes today, and she beat him pretty badly. He definitely did not let her win. He definitely does take over her bed sometimes. Mom tries to stay out of the bed during the day, and Lewis needs his naps. The girl came in to take mom's dinner order, and she saw Lewis in the bed, so she asked him what he would like for dinner. It's not the first time that's happened. Sometimes they don't read the first name correctly, and see Lewis, and call him Charlie, thinking he's the patient. He's beginning to think he should just order himself a meal.
Right now, the Rangers game is on. Some more family is coming to visit today. She and Toni continue to discuss quilting projects. When Mom and me went camping a few weeks ago, we stayed inside the Airstream most of the time because it was so dang windy outside. I'm certain she'd much rather be stuck in the Airstream than in here.
I mentioned in a previous post that Mom gives her IV pole a different name every day. She's going to start drawing a new name out of a hat each morning. If you have any suggestions, please send me a text (817.300.0414). Don't put them in the comments, because she wants them to be a surprise every morning. Funny names are much appreciated.
Please continue to pray for healing and peace.
The doctor has already stopped by today, so we probably won't see him again until tomorrow. Mom's hemoglobin numbers are a bit lower, which they were expecting because of the medication (the pill form is what helps "put out the fire" so she's able to progress through treatment). She will get a transfusion today. We were a bit alarmed by that news, but apparently it's part of getting her stabilized before she can start the regular chemo. It gives her own blood a bit of a boost.
Kate visited yesterday afternoon, and shared some hilarity about their life with a 3-week old. Hendsley is a bright shiny little thing in the darkness! Mom loves the pictures and videos coming daily. Ryan sent a funny selfie holding Hendsley while Kate was here. Hendsley had just woken up, and I think he said something like get home soon or send help. Last night, Kurt and Toni prepared a steak dinner and brought it to her. They were able to eat in the family room together. Rick has been under the weather, but Mom is really looking forward to when he and Kelly can visit. Eddie and Cory have promised to come today, which will surely provide a ruckus.
The rest of today will be spent showering, walking, transfusing, and all the other activities mentioned yesterday.
Please continue praying with us.
a couple more things:
* Kate taught us how to add the blog to our phones' home screens. You might want to consider it if you're checking in often. Sooo convenient.
* Please include your name when you comment on the blog. Mom would love to respond, but we can't tell who they're all from.
* correction on yesterday's post: Lewis does not necessarily love watching the Rangers games, but he does love squeezing in mom's bed with her to watch the news and reruns of Blue Bloods and Hawaii50. The tech caught them last night, and took this picture.
These posts are definitely not going to be published at the same time each day. There's nothing super exciting going on here, so once the doctor updates us, that's all we've got for you. It does take me a long time to write anything, though, so it will definitely vary day to day.
Today, the doctor asked mom if she was in pain or bleeding or feeling badly in any way. She is not, and her appetite is good. Her blood counts have improved slightly, which is encouraging. He was pleased that she has been walking, which we are doing several times a day. She has to bring her IV pole, (which she calls Hank today; yesterday it was Fred; the day before that, Buddy) but she's still faster than us. To get her to slow down, I have to say, "Where's the fire?" She always thinks that's so funny. She just doesn't understand the struggle. On one of our walks today, we saw a great message written on a white board in the hall that said, "If Plan A doesn't work, there are 25 more letters. Be cool."
She's gotten lots of texts and a few calls today, and she really enjoys both. We spent some time in the family room while she and Toni shopped online for new pajamas. She's doing hand work on some quilting projects she and Toni have going. She's all set up to watch the upcoming Rangers games, which Lewis will come enjoy with her. There are card games and dominoes, games and other distractions on her phone, lots of talking and processing about all of this, and talking a lot about plain old things too. The balance is necessary. She and I are very quick to cry over just about anything, and we've decided we're just going to go with it. Toni has been the rock, taking care of business. She's the best one for that job.
Carol Wilson sent me a video today of Tony Evans and his children discussing family pain. Mom and I listened to it together. Here are a few things we took away from it:
* We're waiting hopefully not hopelessly, because we can point to times in our lives when we experienced the Lord's faithfulness, and we're waiting hopefully on Him for a miracle.
* The Lord's Will is unconditional. Even if we meet all the conditions He requires of us through prayer, etc., He may not accommodate our desires, because His plan is better than anything we can imagine or want. Our prayers should include a request for our will to align with God's.
* Pray and then do the next right thing. (These are also the words a friend of mine's mother, Mary Nell Copeland, lived by, and her legacy shows in all of her children's and her grandchildren's lives.) We're not meant to focus on the mountain up ahead and trip over the rock in front of us. The day to day living is the way through it. So sometimes, getting mom a cup of hospital coffee is the next right thing to do.
* These circumstances can be a catalyst for each of us to reset some aspect of our lives. Maybe it will prompt you to stop and breathe in more moments that really matter, so you don't ever regret not doing so. These circumstances helping you reset would be one good thing that comes out of this bad thing.
* We will choose to trust God's plan in spite of the circumstances. He is always good.
Hey everyone. First, thank you for your love and prayers. Mom feels them and is moved by just how many of you have already been supportive. Staying positive and optimistic will be a major factor going forward, so please keep it coming. Humor works wonders too, as you know. Like many, we avoid seriousness with humor in this family, but we'll need help in that department also. Lightness is a great distraction from the reality. Mom's faith is strong, and we're believing God for a miracle.
We'll keep this blog updated, so please check here as often as you like. You may also leave messages here, and Mom will read them.
Here's the story so far:
For the last couple of years, Mom had been getting B12 shots for fatigue. Her doctor took her off the shot, but told her to take B12 supplements as needed. Within the last 2 or 3 months, the supplement wasn't doing the trick. She was getting tired much easier and more frequently. So, she went to her primary care doctor and had blood work done. That was on Friday, 5/6/22. On Monday, 5/9/22, the doctor called and told her to go to the emergency room immediately. That was at about 5pm, and she was admitted a little after midnight. They did many more blood tests throughout Tuesday, 5/10/22, including a bone marrow biopsy. At this point, we were told they were going through the process of ruling things out, but she was prescribed an oral chemo drug and moved to the oncology unit. At that point, of course, we knew it was cancer. They said the bone marrow results would tell us what kind, but those results wouldn't be back until Friday or later. On Wednesday, 5/11/22, her Oncologist came into her room and explained what it was, and gave us the plan.
She's been diagnosed with AML M3. Feel free to research that if you need to know the technical information. Basically, her red blood cells are not maturing enough to do their job. She also has a dangerously low white blood cell count. Because of her age, it's especially difficult to recover from this disease. If she had waited even a few more days to go to the ER, she may not have lived longer than two weeks. But the doctor was optimistic that she could survive it because of her active lifestyle and otherwise good health. A few other things are also in her favor: Of the types of AML, this is the one that is most survivable; She got to the hospital early enough that they were able to jump start the chemo treatment; She is willing to fight it in all the ways she's told to: positive attitude, prayer, support system, resting, eating right, walking daily, etc. True to our Sugie, she's not playing around with this. She's mad-determined, and if you know her well, you know she's scary when she's mad, so this disease doesn't have a chance.
So, the doctor said to anticipate being in the hospital for 40 days, give or take. She's obviously not happy with that since she's a goer and a doer. We've brought her plenty of her stuff, so she won't get bored, but she feels like she's trapped. She made this clear to her doctor and nurses, but they basically said too bad. So her main goal is to get out in less than 40.
Thank you, again, for all the love and prayers. We'll keep you updated here.
