So…….I only saw mom for about 30 minutes yesterday. Feeling a little guilty. I had thought it would be the day I would take off, because it is one of the two days she usually gets the most visitors. Not sure if that was the case today, nor was she. I first heard from mom at 9:30 when she told me she was in the mood for refried beans from Molina’s, which doesn’t open until 11 or 11:30. I never can remember which. Her friends, the Rasmussen’s told us they were bringing her Molina’s food today, so I told her to hang in there. At 12:07, I was on the way to meet Tyler to buy him a new suit for Jenna’s wedding, and I got the second call. “I’m hungry. I want Molina’s beans.” So I told her I was on my way to meet Tyler, but I’m sure your beans will arrive shortly. Just go to the dining room and have some soup and a little something light to hold you over. She was not having any of that.

We went by her house to pick up a few more things and I bought her a new robe, which she really wanted because she is always cold these days. When we got there around 3, we met Rick in the parking lot and he said, “We have trouble, she hasn’t gotten her beans and she wants them now.” So he ran over and picked them up for her. I know this sounds crazy to anyone who has never had Molina’s beans. But they are amazing-just the right amount of lard and/or cream to make them melt in your mouth. Anyway, she devoured them like a prisoner of war. Crisis averted. One more gold star for her favorite son-in-law!

Full of beans, (lol!) she was still not in the best of moods. She wasn’t sure if anyone came by today, but she also seemed a little confused as to the day and time, so, there was that. Two of her friends that we had never met before, came by to visit, so we left. The room isn’t big enough for five visitors, and it seemed like a good time to take our leave. We had a nice quiet evening that didn’t involve being gone at dinner time and it was a nice change. Rick was excited to watch the U of A football game on TV, and I wanted to do one of my two remaining wedding projects. See below…….

Wine cork bar sign for the wedding in case some whack job doesn’t recognize the bar….

The first call from mom was to suggest we start packing her suitcase for the Texas trip. I think it might be a little soon……but she’s getting pretty excited about it. We’re still trying to figure out the logistics since it is bound to be challenging.

Friday turned out far better than anticipated! I got to Handmaker a little after 9, and mom was in the gym working with the physical therapist. She had her sort of walking while holding on to the parallel bars, or at least holding with her right hand, but the left was still not able to grasp the bar well. The left leg was obviously not doing very well and she was far stronger with the right side, but it’s something. It’s the first time I’ve seen her somewhat upright in over two weeks. I brought along a cup of her favorite Tschibo German decaf with heavy cream, of which she had two sips…..

We left for UMC for her first visit with Dr. Lemole, the neurosurgeon who is taking over her care from Dr. Schroeder. We both liked him so much. It just seems like the people at UMC work together as a team, even though they are in different buildings. At CNS, they shared a practice and building and yet there didn’t seem to be a sense of teamwork between the doctors in any way. The neurosurgeon said that Maria Bishop was in charge of this ship, and makes the decisions and everyone follows her lead. Wow. At the other place, you’d think the neurosurgeons were gods. We both feel so good about the way everyone seems to care here. It is exactly what we had hoped for. Dr. Lemole also had the sutures removed already to avoid further infection. Now, just a few more days until our next meeting with Dr. Bishop and we’ll have a better idea of where we are headed.

Mom seemed like she was in a much better mood. She still had her moments of, “why is it taking so long, I’m tired of sitting here.” I finally asked her if she had a date or someplace pressing to be. And if she thought anyone liked waiting. We all wait our turn. Period. Even I have places I’d rather be. I’m not complaining. It wouldn’t change anything. She seemed a little calmer….. On the way back our driver was really funny and every time I looked at her she had a big smile on her face. We got back to Handmaker in the middle of lunch, and since she hadn’t pre-ordered, her choice was tuna casserole or egg salad on a croissant. She went with tuna casserole (which was a questionable choice since she’d never had tuna casserole and is not a fan of casseroles in general). I got the hell out before it arrived, because I knew this wasn’t going to be pretty and I’m no dummy!

Rick and I picked up some tile samples for the kitchen for her to look at, and we all went over after her dinner. She was still in a good mood and seemed genuinely happy to see us. I can’t emphasize enough just how much of a difference that makes. Sometimes I get there and I sit in my car and talk myself in to going inside because I know I’ll probably be sad, or hurt, or frustrated. It just takes a little something positive to make it all so much better….

Of the first 14 calls yesterday, 12 were concerning mom. It’s a wonder I even make it out the door. One of them concerned a new appointment with Dr Lemole at UMC. I was told I needed to bring along all MRI and CT scans. Wtf? There goes the whole day. I started out with the very unhelpful woman in medical records at CNS, then got ready to go to TMC for the rest. It turns out that’s where the lions share of her records are. After an Internet search and calling to find out where and how I go about gathering all of that, I was told Dr Lemole at UMC had already requested it and it was on its way. That worked out well. But this changing horses in the middle of a stream thing is not as easy as it sounds. I know it will be worth it though.

I spoke to a few of mom’s friends in the morning. One of her good friends, Rosa, was very happy about how well mom looked on Tuesday and what nice conversations they have. I’m so relieved to hear that she does look better and talk more at least some of the time. We usually get to see her when she’s sleepy or impatient or cranky and not looking that great. Rick thinks she’s sick of us. Tyler thinks she’s mad at us because she’s there. All of those things have gone through my mind, but I will say it’s not easy trying to figure out the source of her dissatisfaction (other than the obvious-cancer!) Since I knew Rosa was going there in the afternoon, I decided to wait and go with Tyler and Rick.

Another call I got was from Handmaker telling me that mom fell trying to get from the chair to her bed on her own. That sure sounds like her. She wasn’t hurt, thank god! Of course when I brought it up, she said she had to wait too long, which could mean 2 minutes or 10, both of which are unacceptable for her.

The good news is that we are no longer doing the Driving Miss Daisy thing. I started driving again and am trying to not use the splint/sling as much. Still sore but definitely feeling better!

Let me start out by saying I love mom’s new doctor, Maria Bishop! She is pretty amazing! So this is what a caring doctor looks like-nice! We didn’t get as much information as we had hoped for today, because the a-holes at CNS didn’t get mom’s records to Dr. Bishop until today. Had they done it in a more timely manner it would have made all the difference. Thanks people! Shouldn’t have expected more. We won’t get a lot of answers until next week. She does, however feel that mom can make the trip to Texas! Maria asked mom if she was okay with seeing her previous neurosurgeon or radiation oncologist if she needed to and mom said “only if I have to, but I don’t want to.” I should know in the next few days if that is necessary. Hoping it is not. I wish there were more to tell.

The good news is that Iris met us there and took us to the gift shop there where we could order a wig, which had been on mom’s mind for a long time. Having Iris there was a great comfort! Another thing that was great was that she and the social worker both felt that Handmaker is the best place for her!

Wow, it was a long day! I got to Handmaker at 1:00 so that we could FaceTime with my cousin Steffie before the appointment and got back there after 6, at which point mom insisted I go get her humus and pita. Yeah, I’m hungry and tired too. You are in a place where your meals are provided. I do that for myself-but, hey who cares. Let me go get you what you want, now-sorry, but that really pissed me off. Long day. Instead of going to Athens, which is what she wanted, I ran to Trader Joes. I don’t even think Athens makes humus……. anyway it was not ideal-but I could have brought her homemade tomorrow. My old mom would have been more considerate and less demanding, my new mom, not so much. Needless to say I brought her the food but didn’t stay. Besides I was starving! Next time I’m bringing a book, since mom sleeps through most of the wait and complains anyway.  I was super annoyed.

Today, however, is a new day and I’m curious to hear her take on everything she did hear.

Today is the day. Will we get a glimmer of hope or cold stark reality? Your guess is as good as mine. No matter which way it goes, will my mom hear it and accept it? Again, no clue. Her grasp on this is so inconsistent. One minute she’s in tears and depressed, the next minute she wants me to go pick out new tile and granite countertops for the kitchen. I will go look at tile this week, but it just seems so frivolous and unnecessary. She wants it done before she gets home…… Then she talks about hoping to make it to Jenna’s wedding in 4 weeks, but the next thing she wants me to do is make reservations for us (including Rick!) to go on a Viking River cruise in May. She keeps telling me we deserve this with all we are going through. She’s right about that-it’s been hell, but May? So I have been putting it off. She wants the cruise reserved and paid for before the end of September-apparently there is a better deal if you do it by then. Yikes. I have NO idea how to handle that one!

Yesterday I received a phone call from the Center for Neurosciences, wanting to schedule appointments for all three doctors she had seen there. You have no idea how satisfying it was to tell them mom has an appointment at Arizona Cancer Center today and that I’m not so sure she will be seeing any of the doctors there again. It totally depends on what Dr Bishop says. If she feels we need to finish up radiation there or see the surgeon there for follow up, we will. Otherwise we are done with CNS! They also asked if I have her POA. (Why yes I do, and I had it for Mickey as well.)

On a lighter note, today is the Republican debate which should provide some comic relief….my apologies to anyone that comment might offend, but seriously any debate that includes The Donald is bound to be a shit show. So I will pour myself a glass of wine and be prepared for the kind of entertainment you just can’t make up.

Well shit. She did not magically get better while I was gone. One can hope for a miracle. But back to my realism affliction, I don’t see that happening. God, this sucks! Mom has talked to me numerous times about when she gets home, this or when she gets home that. How in the hell are you supposed to respond to that, without lying or being brutally honest? Luckily, at this point it probably doesn’t matter how I respond because she will undoubtedly say it again as though it was the first time she said it.

On my way home from Dallas, someone from Handmaker left a message regarding my mom’s appointment at Arizona Cancer Center on Tuesday the 15th, only it’s on Wednesday the 16th. Great. Why is everything so damn hard? Rick dropped me off at Handmaker on his way home. She had the TV on when I got there. A commercial was on and two people were walking in a park. She looked at me and said, “God, I miss being able to walk.” We sat and talked until the aid took her off to give her a shower and get her ready for dinner. Just watching someone move her unresponsive, uncooperative body to a wheelchair is depressing.

Bob left for Reno for 3 weeks this morning. I have a feeling he will be sorely missed. He has provided mom with early morning visits along with Starbucks iced caramel macchiatos-and it’s something she looks forward to daily. Gina and Tom left for Germany as well. The visitation herd is thinning. It’s very difficult for friends and family to visit often, because it’s so incredibly sad and it’s a constant reminder that she is slipping away bit by bit, day by day. Those of us who love her,  miss her as much when we are there with her as when we are not, and it’s way less painful to miss her from the comfort of your home than when you are sitting with her. To those of you who were able to make it over there this weekend, we thank you! And to those who could not, we understand and when you can, she will be thrilled to see you, though you might not be able to tell. Rick visited twice a day in my absence, and gets best son-in-law award! He did say he couldn’t tell if she even enjoyed his visits, but I can’t ever tell either. So, there’s that. We made a pact-the three of us, that everyone of us needs to take a 24 hour break at least once a week for the sake of sanity-hopefully we can stick to it.

I’m so glad Iris talked me into staying in Abilene until Monday morning! I have to admit it was pretty easy! Jenna and I got to spend a nice day together to go over all of the little wedding details with me being totally present. We all went out for a great brunch at Perini Ranch and after Tyler went to work we ran some errands and had some time together. I haven’t had a 24 hour break from Mom except for the two brief trips to Texas! I should be able to allow myself a break here and there, when I’m at home but just can’t seem to. I always think of her at Handmaker by herself and worry about her feeling lonely or ignored. I also apologize to anyone who called wanting to talk to me about mom today…I just couldn’t do it. Not this weekend!

Everything seems to have gone well while I was gone. I know several of her friends came by and both Rick and Tyler visited with her. This is our big week-two more days until we meet with the new oncologist! I’ll  give more updates after I see mom.

Yesterday’s  post was SO hard to write! I was on my way to Texas to surprise Jenna and Tyler at a couples wedding shower that her Abilene friends were throwing for them. I didn’t want to ruin the surprise….but that’s why I encouraged visitors for mom. In three short years these two have built quite a group of wonderful friends! And the ladies who put this together could be professional party planners! From the setting to the decorations to the food and drink-wow!

Have you ever been on a plane when the person sitting next you just would not shut up??? My 7a.m. flight was like that. A nice old guy from Mississippi,  or should I say naaahs ole gah? Even the flight attendants felt sorry for me, when I went to the restroom, one of them said I could hang out back there awhile. Closing my eyes didn’t stop him from babbling on, telling him I didn’t feel well didn’t stop him. I saw myself in the movie Airplane, when the guy imagines hanging himself so he wouldn’t have to listen anymore. I ran off that plane! Well, as much as I could with a sling on my arm and a carry-on.

Jenna’s friend and co-worker, Terri, was in on the surprise and offered to pick me up at the airport and hide me until party time. I don’t know which one of us was more excited about the surprise, Terri or me? We had a fun afternoon talking and having some wine at her beautiful  house out in the country. The party was absolutely lovely-thrown at her bosses amazing house. I will try to upload the video at the end of this post.

I sent the video to Tyler who was visiting my mom at Handmaker. After sending it we FaceTime called them and mom was in tears after watching the video. Jenna couldn’t believe the change since the last time we did that a few weeks ago. It’s pretty dramatic, so if you haven’t seen her in a while, be prepared!

It’s strange, but Rick sees small improvements better than I do. I keep focusing on what isn’t, while he sees what is. I guess it’s obvious who the optimist is. And no, I do not see myself as a pessimist-I see myself as more of a realist. Mom was able to move her hand a little and stand very briefly. But will that make a difference in the long run? Not so sure. On the other hand, I do feel that the more we talk about meaningful things, the more I see an improvement in her attitude. We need that. She is so psyched about the wedding and we talked about how that would work. It’s just guessing at this point, but I’m sure we’ll have a better idea soon.

I think she gets kind of lonely there sometimes. It’s tough to spend a lot of time there for those of us who visit her, I can only imagine how much it sucks being there 24/7! I’m glad it’s the weekend because she seems to get more visitors then. I spent a couple hours with her after she had dinner last night. I think I kept her up a little later than usual….I finished up her manicure, so of course mine looks like shit, but oh well.

If you’ve been thinking of visiting, I would encourage you to do it. I think she’d love it and you might be pleasantly surprised. She is definitely looking better than when she was at TMC! I’m keeping it short today-Just tired and don’t have a lot to say…..

I arrived at Handmaker yesterday just in time to wait for mom to finish her lunch, so I put some clothes that I brought from home in the closet for her. I put some framed photos of her and Mickey on the shelf.  When she was done, she was whisked off to occupational therapy. So glad I went-it took over an hour and a half of waiting to actually talk to her. No, I’m not very patient. Wonder where I got that trait, lol! I’m glad I waited, though seriously I’m still not driving, so where was I going?  Rick is still the Hoke to my Miss Daisy. We did have a good talk. We discussed how she is feeling-which is disgusted with herself for not being able to do anything without help. I pointed out that she has absolutely NOTHING to do with that and that it is not her fault in any conceivable way. She feels like she is a burden. I told her how much I love her and that I will always be there for her. We both cried, but it was a good cry.

With a lot of help from Iris, we got her registered at the Arizona Cancer Center and have an appointment with Maria Bishop next Wednesday at 3. I’ve already set up transportation for her. All of her records should be sent over in time to have her new doctor review everything. I feel good about this. She may be able to try something different, or at the very least give us a more realistic idea of what we can expect in the future.

The social worker at Handmaker met with us and asked a lot more questions than I ever heard at TMC. She asked what would happen upon discharge. Really? Do I look like I have a freaking crystal ball? I told her it was a question we might be able to answer once the MRSA is cleared up and we see what her strength looks like and where we are with the tumor. It’s too soon to answer that question. But, wow, that’s just pressure considering we are in day 2 at Handmaker! Does she need me to say out loud that I can’t give her the kind of care she will most likely need? I know that, but I certainly can’t admit that to my mom, at least not yet.

Mom is in the Bregman neighborhood at Handmaker. Each unit is called a neighborhood here, and they encourage interaction between patients. The rooms are set up like suites, two bedrooms per suite, sharing a bathroom. Her neighbor, Lois is a hoot. I met her daughter and granddaughter yesterday. I felt like I found a kindred spirit in her. One of the many things she said was, “I love my mom. I will take care of her and watch over her and do whatever she needs, but I will not wipe her butt. That isn’t good for either of us and it’s where I draw the line. If I wanted to do that I would have gone to nursing school, but I am very good with money, and will make sure whoever does wipe her butt gets paid.” Wow! I have thought that many times, but never really said it out loud, but, ditto!

So there you have it. Mom is pretty wiped out by dinner, so if you want to visit, I would encourage you to come in the morning or around 3 or 4. If you wait until 6, you’ve got about an hour. After that she wants to sleep. This may change as she gets acclimated and if it does, I promise to update here.