Sometimes, I wonder if I’m catastrophizing. Is mom doing as poorly as I think? When you see her listing sideways in her wheelchair, not really interacting with the other patients, who we have come to know these past few weeks, it’s obvious. When she first got here, I looked at the other patients, and thought, yikes, this is a sad group. Now, some of those same people have improved or been released. Not my mom though, she’s the lady who is getting worse. Every damn day.

And another thing-why do I have to be the one that tells people she needs to be cleaned up or her bedding should be changed? This is the best? Holy shit-that’s really scary. She can’t  even tell anyone that she needs that. If I don’t, then what? And they can charge $274 per day for this? Nobody helps her brush her teeth if I don’t. Here’s a suggestion-Pima College has dental hygienist and assistant programs. How about having the students go help people in these situations brush their teeth, because NO ONE else will. My mom was all about good dental hygiene. I literally thought I would throw up helping her tonight. Good God! Really???? I didn’t do it for two nights, so no one did. Gag me.

We treat our pets better than we treat our sick or elderly. What is wrong with a society that robs our loved ones of dignity and less painful and prolonged deaths, only to spend approximately 25% of our Medicare dollars in the last year of life? This makes no sense. I guarantee you that if doctors all were in salaried positions, we might see a change in those numbers. The difference between our experience at Arizona Cancer Center vs. Center for Neurosciences proves that point, as far as I can tell. Yet one more argument for some type of socialized medicine…..this should not be about selling medical care.

I thought we had all the relevant conversations. I thought everything was in black and white. But when it comes down to it, the will to live trumps everything. Common sense. Reality….Everything. I think about my mom and what is going on all the time. If I’m awake, it’s on my mind. What now? What’s next? Will tomorrow be better? Worse? You can’t be prepared for any of this-even when you think you are.

At the risk of stating the obvious, cancer is a bitch. No matter what kind or how it affects,  always a bitch. But brain cancer is a fucking bitch. Pardon my French. It can affect every part of your body and your life. When I got to Handmaker yesterday mom was in bed sleeping-I tried talking to her and she was slurring her words. They could not take her to her MRI appointment in a wheelchair, they had to use a stretcher since she seemed to have no core strength whatsoever and couldn’t seem to sit up. It made me think that I might already have an idea of  what the MRI will show….. I feel like we are stuck in fast forward instead of play and nothing I do can get it back to play again.

I’m starting to question the very idea of trying to get mom to Texas. It seems like there is no way it can work and when she realizes it, it will break her heart. I just feel like it is more trouble for her than she can take in her constantly declining condition. Some dipshit actually suggested a medical air transport. Seriously? If you are in that bad of shape that you can’t sit up in a seat, why the hell are you going to a party? I can see it if you have to get to a hospital in a different city, but a wedding? I don’t think so.

Tyler went by in the evening and she was sitting in a wheelchair again, so that’s something. But what? Wish I had more today. I just don’t.

On a somewhat lighter note, some of my German family has no concept of the time difference between there and here. I don’t generally answer my phone after 10 at night or before 9 in the morning, unless it’s my mom or one of my kids. That gives a full 13 hours of calling time. That means 6 in the evening German time through about 7 in the morning. If you are having lunch in Germany-don’t call!!! And PS-if its 9 a.m. on the east coast, you will wake me up-we’re retired and gave that early shit up.

I’m sorry this is late today. I really wanted to see if there was any improvement. Tyler and I walked in and she is now on Oxygen. Dear god. What next?

Well yesterday sucked. I think mom is just now starting to grasp what’s going on. I stopped at Starbucks on the way to Handmaker thinking it might both cheer and wake her up. Not so much, unfortunately. We went to our 11:00 a.m. committee meeting and it went exactly the way I had anticipated. She is not making any progress with her physical and occupational therapies, which is what must happen in order for insurance to cover it. So as of Monday she is being discharged. But, I see no reason to change anything now, so we will just pay it, at a rate of $275 per day until the wedding trip and then figure out what we’ll do after that. I see no reason to make change after change at this point. She started crying about halfway through the meeting and continued on and off for the next few hours-it was the saddest thing ever.  She hates her life and says she is ready to die. We sat in her room after the meeting and talked and cried together. I told her that neither one of us can change her health, but she can try to make the most of her remaining time. It’s all about attitude. Seriously, you can waste a lot of time crying about what’s happening or you can try to enjoy the people who love you and care about you.

After leaving, I ran around doing all kinds of errands including looking at more damn tile. Sweet Jesus-it’s the last freaking thing I give a shit about at this point. We all went back a little after her dinner and mom was already in bed and she was crabby and rude, but she was talkative, just nothing you would want to hear. She had literally just finished dinner and complained about starving. Keep in mind that none of us had anything to eat in about 6 hours, so Rick ran and got her the craving du jour while we kept her company and listened to her complain, before we all got to eat. I thought it was ridiculous. I’m starting to think I like her better when she’s crying as opposed to laying on the guilt and saying rude things. I have to be back at 9:30 in the morning for a trip to UMC for an MRI, and I can’t begin to convey how much I am dreading that. After that appointment I’m calling it a day. I need a little distance for at least 24 hours…..

I woke up at 2:45 in the morning (thanks to Idgie and the steak scraps I fed her earlier) which, of course got me to thinking about all the things mom said and the way she acted last night. It’s not the first time we have been at this junction and it’s not the first time she has taken her anger out on me. I also know it’s stupid to take any of it personally, but wow, how do you not? What kind of saint can just smile and ignore it?

So yesterday was a first. I know my mind was on a lot of different things. Plus I got a few phone calls in the morning that lasted very long. I also cleaned house a little between conversations. But….. I got dressed while talking on the phone and forgot to put on a bra-didn’t even realize it until I had been driving for a while.  That hasn’t happened since the 80’s. Must admit it felt kind of good, but it was weird.

Okay, I know no one really cares whether I wore a bra or not yesterday. Just trying to provide a bit of comic relief………The appointment with Dr Bishop is what is on everyone’s mind. So here it is. There will be no more radiation. So far it seems that chemo is on hold as well, possibly only until after the wedding-I’m not clear on that. She is trying to improve mom’s quality of life and make sure she can get to the wedding in the best possible condition. There is a neuro oncology tumor board meeting today where several doctors will go over mom’s records and make recommendations. We have an appointment for another MRI scheduled this afternoon. Dr Bishop will call me with the outcome of both over the weekend. As we were leaving she pulled me aside and asked if I understood how serious her condition is. So no tangible news, but I think we can all see where this is going. I’ve said all along that I want honesty and reality and that I’m tired of having smoke blown up our collective asses. And I would love like hell for there to be a miracle cure. But the bottom line is mom’s condition is worsening. When you see her day in and day out, it’s obvious. She has some days that are better than others but there is a clear and consistent decline.

When she was transferred to her wheelchair yesterday before we went to the cancer center, she was not able to sit up in her wheelchair without a side table to lean her left arm on to keep her sitting upright. She just kept tipping to the left. On the way back from there in the van, she suddenly slumped forward, knocking the table off and could not sit back up. I had to turn and use my bad arm to prop her up until we could safely pull over and use a gait belt to strap her in to the wheelchair for the rest of the ride. This just came out of the blue. I can only guess what’s causing it, but I will tell you to see her like that was frightening.

I got home and had a couple of drinks and several cigarettes before I could calm down enough to even think about eating or starting to cook. My phone started ringing way too early this morning with friends obviously wanting updates and I apologize for not answering, but I’m not ready to talk about this just yet. That’s why I have this blog…. And I need to wrap my head around what’s happening…..

Later this morning we have a meeting at Handmaker, which is not anything I’m looking forward to, followed by the MRI. Another lovely day in the making.

I know, logically, that we are not the first family to deal with scary medical issues. I know there are countless families around the world dealing with equal or maybe worse situations. We should take comfort in that knowledge. I spend so much time trying to look at the big picture and remain calm about it, but every now and then it just gets the better of me. It makes me so sad and so unsure of what is ahead and how we will deal with the decisions that will undoubtedly arise in the not too distant future. I have finally come to the decision that I need to just feel all of these emotions fully and not keep trying to keep a clear head all the time. That shit wears you out to your very core.

My mom and I used to talk on the phone ALL the time. We talked about everything. What’s going on in our lives, the kids, you name it. Whenever she went out of town, I would reach for the phone to tell her something funny or annoying or whatever. And then I’d feel sad because I couldn’t just pick up the phone and talk to her. I’d realize I had to wait until she’d get back…..Since she was gone to Europe for a month, it sort of broke the habit. But there are still so many times I want to pick up the phone and call her. Even when I do call and she does answer, we can’t just talk like we did in the past. She can’t seem to keep the phone up to her ear for any length of time. She doesn’t listen or stay on a topic for long, and generally just talking isn’t an option. Besides, what IS going on in her life? Sleeping, eating, therapy, the occasional visitors….not much to talk about. I really miss it.

Yesterday afternoon I popped in to see her and the occupational therapist was working with her. She is just so exhausted all the time that it’s difficult for her to do much of anything. She was in tears thinking about the possibility of not being able to make it to the wedding. The case manager came in a little later and we talked about the meeting we have set up for Thursday morning. I get the feeling that they are thinking of releasing her from this unit because such little progress is being made. It is, after all, a rehab unit. I don’t know what our options will be if that is the case. The occupational therapist pulled me aside and told me to be sure to ask what they would recommend since she does require 24/7 care and it doesn’t look like that will change. She is also concerned about her flying and whether medical transport wouldn’t be a better option, or at least one that we keep in mind as we get closer to the wedding. Sheesh. Not something I want to think about…..

Today is the day we’ve been impatiently waiting for. She gets her wig today. She sees Maria Bishop today. So much is riding on that appointment. I hope mom is present and alert for it. I hope I remember to record the conversation so we don’t miss anything. Last time we both came away with different impressions…I am excited and terrified in equal measure.

It took us forever to drag ourselves down to Handmaker yesterday. It was such a beautiful day and it was so nice at home. When we got to mom’s room, she was asleep. She seemed a little disoriented, wasn’t sure if anyone had visited (yes), whether she had occupational or physical therapy (both), or whether she had eaten (she had). I’m concerned. It seems like she is more and more confused. The nurse’s aid has noticed the same thing. Is it the infection, the tumor, something else?

Dr. Schroeder’s assistant called to ask why we cancelled mom’s appointment with him. I explained that we decided to move her treatment to Arizona Cancer Center and that we had already seen a new neurosurgeon who checked out her incision, and that everything was fine. Thankyouverymuch. A little while later she called again and I missed the call, but she left a message saying Dr. Schroeder would like to see her just one more time and could I please call and schedule that. Um, no, actually. I see no point. This is the same jackass that totally shamed me for even mentioning that we wanted mom to see Maria Bishop from the start. Sorry, but I owe this man nothing, except maybe a little contempt.

I need to get on the stick and try to find a few more tile samples. Out of the three I took to the house, two looked good, but mom nixed one because it had a texture and she prefers smooth. And then there was one. Sooooo, back to the drawing board. I feel like I just did this tile search exercise recently, oh that’s right, I did. I have to admit I kind of like this kind of thing, it’s just that I am used to being the decision maker…….

One more day until we see Maria Bishop again. I don’t want to get my hopes up, but still, I do hope to hear something positive or hell, anything at all. Just something. What’s going on, where are we headed, will she ever be well enough to live at home again? It’s kind of like what Tyler said, there’s always something hanging out there that we’re waiting for and it always eludes us, it moves farther away. So we wait, but we don’t really know what we’re waiting for.

Well, this certainly is a beautiful day! You’ve gotta love a nice gloomy, rainy day in Tucson. It’s  a good curl up on the couch with a good book while soup is in the crockpot kind of day. Dragging my butt to Handmaker will be more of a challenge today, I’m already dreading it.

Rick decided that he wanted us to look at a little house on 5 acres out on the southwest side of town to buy and flip in about a year. So we drove all the way out there, and it was crap, as I assumed it would be. Hmmmmm. I do not like the area. And I feel like I have enough on my plate right now between mom’s cancer and our daughter’s wedding. Men. He seems interested. I am not. This could be challenging. Okay, I take all of that back. Rick just told me he doesn’t want the place. Hallelujah! One less battle in the horizon.

We finally got over to see mom late in the afternoon, and it seemed she had several visitors earlier in the day, which is good. I keep wishing there were a better way for her to live than there, even though I keep hearing Handmaker is the best. I would like the best to be better. I would like the people to be a little nicer, a little more caring. Mom told me that someone tried to get her to stand on a scale yesterday. Two things come to mind. Why? And what kind of an idiot would ask that of someone who can’t stand on the floor without support, much less on a raised square foot scale. Did this really happen?

After visiting with mom and Patricia, we all went to the dining room, and while we have had several entertaining times there, yesterday was just sad. Such a motley group of old people with various afflictions, and wounds wheeled in around the dining tables. Mom sat there looking from one face to the other and turned to me and said “Sonnenschein im Altesheim.” Sunshine in the old folks home, and I don’t know why, but we both just burst out laughing. But there is nothing funny about this.

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!