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.

The best photo on her camera from Germany-with my cousin Roland.

I’m starting to feel like this evil witch that doles out a little hope, and before anyone has the chance to revel in the good feelings, I yank it away again. I feel so bad for that! It’s just that every day has downs-on the good days there are some ups as well. On that basis, it was a good day.

Mom really seems to like Handmaker, as much as she can, given her situation. Like I said before, the food is good. The room is nice. The people are nice. Is she getting the level of care she needs? That remains to be seen. TMC wasn’t all that great either…. I think the hospice route might be better in the long run, but hospice is a word no one wants to hear. She likes being able to go to the dining room for her meals and interacting with the other patients. And what an interesting group it is. Every woman there seems to be as blunt and honest as she is, which is pretty damn funny to listen to! We joined her in the dining room at dinner and I honestly wish she had been there alone to meet more people, but we loved hearing the conversations. Tomorrow we will see her during the day and after her dinner which is between 5-6. These folks take their meals seriously!

Mom has the saddest look in her eyes that I have ever seen. She does seem better than when she was in the hospital, but that’s not saying much! She sat up and moved around in a wheelchair which is a hell of a lot more than in TMC. No one uses gowns-visitors aren’t required to glove and gown up. Is that okay??? It does seem less isolating, but is it safe in general? I want to know what is going on in her head. She just doesn’t talk about that and it’s frustrating. She talks about a million little things from long ago and seems to find sadness everywhere. That is not what my mom was like before all of this!

I was raised to think things through rationally and with common-sense. Get the facts. Decisions were not to be made emotionally. Don’t waste time crying. She grew up during the war-it makes sense. Sometimes my own reaction to what’s going on scares me. I see what is happening here. Slowly. Day by day. I know she hates it and I can’t fix it or make it easier. But I can deal with it rationally, the way I was taught to. Does it break my heart and make me sad? Every minute of every day. And until she breathes her last breath, I will do everything I can to get her the best care and make what time she has left as comfortable and happy as possible. I just fear that the happy part may be over and the comfortable part is all we can accomplish.

Thankfully, yesterday ended better than it began. After a nice peaceful morning, which included a phone call telling me mom was leaving that day, Rick and I went to tour the places that would accept mom with her current medical conditions. This is not a job I wish on anyone. Dear god, some of these places are horrible. I was ready to commit mom to the mandatory 15 hours of therapy required at HealthSouth even though I knew she couldn’t do it. And then we went to Handmaker. What a comfortable, kind atmosphere. The rooms were the nicest. And the menu-wow. The choices are amazing. And the items you can get off menu, such as latkes with applesauce, herring in sour cream or wine sauce, fish and chips, would make her very happy!

We went back to TMC and talked about what all we had seen. When I showed her the menu at Handmaker, she was in! And she said this is the perfect place-I’m half Jewish! Really? Good to know. She used to tell me we were a schtickel Jewish, but okay.

The medical transport came around 6:30 to take her to Handmaker. Tyler and I followed with her stuff. She loved her room. The tech that helped her get settled asked what made us choose Handmaker and before I could answer, mom said the food! This could work well….fingers crossed!

Visiting hours are 24/7. If the front door is locked, the code is the odd numbers and then * (13579*). Hers is the first hallway to the left of the lobby. The room number is 124B and the direct phone number is 750-7191. When you want out of her hallway, the code is 1939*.  Handmaker is Kosher, so if you bring in food that is not kosher (like pepperoni pizza) you have to eat it in her room.

I like that there are social activities as well as therapy available. I’m hoping we see some improvement here, if not physically, at least emotionally. We are moving the cancer treatment to Arizona Cancer Center. Finally. We’ve all had enough bullshit and are ready for some honesty. We are hoping to find it there.

I got to talk to a few friends this morning and it was so nice! Especially since I got a call this morning from my mom asking about what time we needed to be at the airport. When I asked where we were going, she hung up on me. I tried calling her several times with no success. When I finally got through, she told me she thought we were flying to Amsterdam today. Yikes. She also told me how much she likes it at Handmaker and how nice the people are. So……we can all exhale!

I received two calls yesterday saying Mom was ready to be moved. Well, just as soon as we figure out who will take her, we’ll check it out. She needs a high level of care, which, she does not seem to realize although she has not been out of her room or her bed for that matter, in many days. Sometimes she looks at me as though she is blaming me for this move somehow. If I had the power and unlimited funds, she would go home. Seriously, this is not like Mickey. He could move around and get himself to the bathroom, though he often forgot. She knows when she hast to go, but can’t do it without the help of two people or one very skilled bedpan operator.

I know I’m being a total baby, but she has been kind of rude and somewhat hurtful lately. Never mind the fact that I’m there twice a day everyday for several hours,  bringing her whatever she asks for, but the attitude is starting to wear thin. No thank you’s ever. Not in the vocabulary. At least not for me. I guess it’s the way she talks to me as much as what she says that is becoming intolerable. I don’t need this shit. I’m running on empty. Just freaking be nice. I guess if it wasn’t just me, it wouldn’t bother me so much……

I woke up this morning in a total funk. It was the first time in weeks that I was able to be at home alone for a few hours. To be quiet and to sit still. But all I want to do is cry or crawl back in bed and assume the fetal position.  When did this all get so incredibly painful? I still can’t drive a car safely, but I’m hoping that I can soon. On the other hand, it is wonderful to not have to hurry up and go to the hospital or anyplace else I don’t want to be.

I called mom to see how she is doing and what her mood is like today. She’s kind of down too. She is not happy with her situation and I don’t blame her one bit. I think we are both to the point where seeing the positive or improvements of any sort just seems like a stretch.

I know the long weekend has made it difficult for a lot of mom’s friends to visit. Between going out of town, or just plain old having (fun) plans of one sort or the other, it just happens. We understand. (And, we’re jealous) She is sleeping so much, when you do get there, you almost feel like you are keeping her up. It’s a frustrating time. One that will go on for quite some time, I’m afraid. We’re still going twice a day for several hours at a time, and it’s rough. Not gonna lie. As I try to psyche myself up to go, I often feel like I can’t stand to walk down that hallway one more time, and then I do. But I am so sick of it-I have to remind myself that when this is all over, I will miss my mom terribly. But then, I already do.

We met with Dr Ortega today and discussed her current condition and the next steps. We also met with Dr Rivera, who hopes he won’t have to do the surgery to remove the bone “flap.” God, that’s a gross term, and I hate writing it almost as much as I hate hearing.  Dr Ortega is probably the best hospitalist we have come across in the last 7(!) weeks. He actually seems to care. He listens. He thinks before he answers. He doesn’t seem to be following a script. He thinks we can get mom to the wedding-by plane. He is concerned about the aggressive tumor. He also understands our disgust with the cancer business at CNS. We do not want to go back there. It is unanimous. We are ready to move on. She will be discharged from TMC sometime this week, at which point we have to choose the next place. We would all like to believe that at some point she will be able to go back home and sleep in that damn over-priced bed……

Tyler and I went to the hospital for a few hours in the evening and she’s doing the same. I sure wish she were reliving the happy times in her life, but the saddest ones keep coming up. I wonder why. Dignity at a time like this, seems to be in such short supply. It just seems that more could be done in patient care in that regard. This is not how my mom would want to live….