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….

Mom had been talking about making Steak Tartare for a little over a week. She had planned to teach me how to make it last Saturday but wound up in the hospital that day instead. So, a few days ago, I brought her an index card and a pen, and she wrote out the instructions. I just wanted it in her handwriting in my recipe box. I picked up her meat grinder, got some top sirloin and made it last evening. It was very good, if I do say so myself. She said it was, as well, and we all know she would tell me if it wasn’t up to par. I also brought her a Heineken, because beer is a requirement for Steak Tartare. We all sat and talked and looked at the photos I transferred to her iPad and then came the Britcoms on TV. She is still looking a little tired, but definitely a little better.

I was talking to my friend Iris about how frustrated I was with the doctors not agreeing on whether the tumor has grown or not. Iris said I should ask the nurse for a copy of the radiologists report, because he would give an unbiased opinion. I did, and he says it has grown. That mystery is solved, even if it is not what I had hoped to hear.

I guess the bottom line is that I am sick and tired of having smoke blown up my ass. I know what I am seeing when I look at my mom, day in and day out. And I think that on some level she sees it too. I’m ready for some honesty from her doctors. The MRSA is obviously a huge setback, but my god, the freaking tumor grew during a month of concurrent chemo and radiation. That means we have a very aggressive tumor, which can’t be treated during the next 4-6 weeks. I’m not a rocket scientist, nor am I a doctor, but I’m smart enough to know these factors contribute to an adjusted prognosis, yet Dr Baddrudoja is sticking to the original 3-5years. WTF??? That doesn’t make sense on any level. I was told that the doctors at CNS give everyone a 3-5 year prognosis, and when questioned about that, the stock answer is they want to give people hope. Really? Hope? How about this answer instead-“the median life span of a person diagnosed with grade 4 glioslastoma multiforma is 14.6 months. Some people live much longer, and some people live much shorter lives. Everyone is different, and we have no way of knowing where you fall on that spectrum. We will do everything we can to give you the highest quality of life for the longest amount of time possible.” That would be a real answer. But to throw numbers around like you have any idea should be criminal. At the very least, it is inhumane. It gives the patient and family an unrealistic sense that there is plenty of time to do the things they want to do, to get their affairs in order, to live fully. There is a clock ticking and none of us knows when it will stop.

I want to focus on one goal at a time for my mom. I want someone to tell me how in the hell I can get her to my daughters wedding in October. I don’t know if the MRSA will be completely cleared up. I do know that she will require two caregivers around the clock. I don’t know if she can fly at that time. If we have to hire a damn ambulance to take her, okay. I have one caregiver lined up, but how do I get a second one, once there? If she is alive, I want to make sure she is there one way or another.

Mom was NPO from midnight Thursday night through Friday afternoon. That means she got nothing in all that time. No food or beverages whatsoever. NPO is an acronym for the Latin nil per os, or nothing by mouth. But not even fluids by IV. Who the fuck are these people? No surgery was scheduled, but no one cancelled the NPO order either. She was so weak and tired and all she did was sleep. Her case manager called Dr Ortega, a hospitalist, and he overrode the NPO order. She had a little soup and some carrot and celery sticks and drifted back to sleep.

Tyler, Rick and I went home and had an evening on the patio with Jack Daniels. Jenna joined us by phone. She wants to be here so bad, but it is just not possible. And it’s so hard on her!

As I was having my first cup of coffee this morning, I got a call from Dr Baddrudoja. He explained that he feels Dr Schroeder is wrong about the tumor growing. That what we are seeing is increased pressure and swelling in the brain from the infection. Well, one of them is right. But which one? He said at this point we have to concentrate more on the MRSA and not worry about the tumor until that is cleared up. It’s something we can agree on.

Mom called me and wanted good coffee and French bread with butter and jam. She’s back to ordering food and telling me what to do and I’m glad.

We brought it to her and watched her happily eat everything and enjoy her Tschibo coffee with heavy cream, of course. We also met Dr. Rivera, who is filling in for Schroeder for two weeks, and I say good riddance! I get the feeling he is the weakest link in that practice. I also get the feeling that since this is a for profit cancer treatment practice, the goal might be a bit tainted by the desire to maximize profits. Not a good place to be when you are fighting for your life and want nothing but the best quality of life for the longest possible time.

Mom had several things she wanted yesterday after the effing crepes, lol! She wanted me to be able to make her a cup of HER coffee. She wanted pajamas. She wanted her iPad. With the pictures she took this summer loaded on it. She wanted me to go to a store and buy her a skirt she saw in a catalog. She wanted fish and chips, delivered piping hot. I took care of all of it (except the skirt) and of course, the first question, was where is my grey warm-up suit. Hmmmm. It’s at your house, because YOU DIDN’T ASK FOR IT! Seriously?

I chose to stay home last evening, because this is sucking the life out of me and I need a break. Watching this shit show of modern medicine and all of the accompanying bureaucracy is making me physically ill. Every time she has to be moved by two people and I see how little she can contribute to this, I want to scream. Where in the hell can she go after TMC? What are the choices? I want to see them before my mom goes there. I would like, no, I demand the ability to make an informed decision. Good god, that is NOT to much to ask for.

Between the ups and downs in her mood and the consistently downward spiraling of her health in general, yikes. Walking in to her room requires a major effort and when you do walk in you have no idea what you will encounter, all you do know is that you will be sad when you leave.

After I FINALLY got my hair done again for the first time in months, Rick dropped me at the hospital for a few hours. She had just gotten her PICC line inserted, after several tries. She was not in a happy place. I believe the first words she spoke to me were “oh, shut up.” And she meant it.  Ouch.

I had a 3 o’clock appointment with a palliative care dr. I think her last name was Taylor. We talked about so many things. Where she is now. Where she is going. Her doctors. The bullshit she was fed from day 1. How fast this is all going.

Well, after being Debbie Downer for the last few days, I actually have something positive to say. We arrived at the hospital around 5 yesterday, and there was a huge change. It appears the vancomycin finally kicked in, and possibly the fact that she hasn’t had chemo or radiation for a few days or who knows what, but there was quite a change. Whatever it was, I’ll take it. She was more lucid, looked better, ate more and showed more feeling and strength in her left arm. It’s something, finally.

It’s probably also the perfect time to have the “what if” discussion. I appreciate the feedback and suggestions by message here, and by text, email and phone. It’s been weighing heavily on me. Her original neurosurgeon, Schroeder told her today that the tumor had grown since the last MRI. She knows that’s not good. But, she seemed a little more like mom.

I don’t have the overwhelming feeling of doom and gloom today, which is a great change! I can hardly wait to get to the hospital to see how she’s doing this morning. Of course, by the time I get it together and get there, I’m sure it’ll be pushing noon. She’s been requesting Nutella crepes, so I’m gonna have to walk Rick through it-that’s sure to be entertaining-lol! He is such a good sport! He made his first Ceasar salad on Tuesday and assures me he is enjoying learning how to make all these things he’s been eating for years.

Today is also the day I have to go to the orthopedic doc to get my arm looked at. I think it’s a waste of time since a fracture just has to heal, but I’ll go anyway. The chest pain/rib thing is worse than the arm right now, but that’s because the arm is immobilized. Still can’t do crap with my hair using just one arm so I look like hell but the Vicodin keeps my from caring too much….I’m starting to worry that the Vicodin will run out soon, because it is magical.

I wish I could safely drive my car! I hate it that Rick has to drive me everywhere. I know that my saying that is pretty ironic  considering the fact that mom just recently had to deal with the same thing, only on a permanent basis. Maybe in the great scheme of things I was supposed to see what it was like to have a left arm that doesn’t work like it should and not be able to drive for the sake of empathy. But, jeez, I already understood that it sucked for mom and I had empathy-I didn’t need this demonstration!

I have a feeling that we will have the discussion today of where my mom will go for the next several weeks during the MRSA treatment. They won’t keep her at TMC all that time. I just hope the options are good ones…. I’m hoping we also hear exactly how long the radiation and chemo are suspended and what that means.

Just as I’m having a somewhat decent morning, I got a phone call from mom asking where her effing crepes are. I explained that I told her I’d bring them at lunch time because she had a few errands that she wanted me to do first. She announced that all she is doing is waiting for people to do things, that she is sick and tired of what her life has become and she doesn’t want to do this anymore. Shit. We talked about everything that is going on and she wants all the information so we can discuss it together. I told her that I wasn’t ready to give up on this and if for no other reason she needed to hang in there for me. For Tyler. For Jenna. If and when we have to make the tough decisions, we will make them, but now is not the time. Back to feeling like hell-I should have known the good feelings wouldn’t last for long.

Mom sat up yesterday evening for a very long time. I wish there was something other than that, that is positive to say. There just isn’t. Watching two people having to move her the two feet from the chair to the bed is an awful thing to witness. The look in her eyes as they move her into position on the bed, the way she can’t help them at all is a haunting sight that I wil not soon, if ever, be able to forget.

Her case manager called me shortly after I left the hospital in the afternoon to tell me that she has to have two people care for her at all times. And it freaked me out 6 weeks ago when they said she required 24/7 care. Shit. At least that was doable. Times 2-not so much. Add MRSA to that equation and we are royally screwed. Then go a step further and add in the fact that the tumor grew during 4 weeks of radiation and chemo, and now with the MRSA treatment they have to suspend both, and holy shit.

She has not been filled in on all of this and it makes me sick to my stomach. My gut instinct is that I would want to know. But if it makes her give up hope or lose her will, than what is the point of knowing? Seriously, that sounds like a rhetorical question, but if anyone has a strong opinion one way or the other, I want to hear it. Because I am in a protective mode and emotionally looking at the big picture and I don’t like any of the options. It’s obvious to me that we need more information. I will have to have a conversation with her soon regarding  her wishes regarding different “hypothetical” scenarios. I just wish they WERE hypothetical. I plan to look over her living will today to see if anything we are dealing with now is covered.

We brought the delicious stuffed cabbage and mashed potatoes that Connie made for her yesterday. She loved it! Thanks Connie! Mom was moved to room 871 today, which is not in intensive observation, I thought it was a good sign. It turns out that they needed the bed. Great.

So last night when I got home from urgent care, I decided to write a few more words before calling it a day. To be exact, about 259 more words. With my thumb, on my iPhone. I had freaking autocorrect to contend with. And then poof it was all gone. I didn’t have the energy to re-write it all with the one thumb.

Between hospital visits I  suggested we take a quick hike on Mt Lemmon for our anniversary. I thought I needed some physical exercise. To make a long story short. I fell. Twice. That has never happened to me before. The second fall was bad. I think I was still rattled from the first one. I was in excruciating pain. I sat there in the middle of the trail and cried like a baby. Then I walked back out, went home and got ready to go back to the hospital and then to the 60th Birthday party of one of my best friends. Because I’m German, lol, and we shoulder through.

Mom was still not okay. Her speech was garbled and often made no sense. All of a sudden her face was beet red and she looked like she was having a seizure, or a stroke and then began vomiting and bleeding from the wound. Tyler, Rick and I all thought we were watching her die. It. Was. Awful. Rosa came with a goulash dinner right after the nurses  started helping her and we got out of the way. A short while later she was taken to have another MRI.

We stayed and sat with her for a long while, until I  couldn’t take the pain anymore and headed to urgent care. I bruised a bunch of ribs and fractured the radial head in my elbow where the radius or forearm bone attaches to the elbow. Anyway, I can’t drive for a while and have my arm in a soft cast and sling and it hurts like a mother! We are referring to yesterday as the terrible, horrible, no good, very bad day.

It was probably the worst 30th anniversary on record. Hurricane Katrina happened on our 20th. We’ve decided to lay low on anniversaries divisible by 10 in the future. Thank god I have a great husband and we were able to laugh and cry and get angry at the same things throughout the day. Rick is my rock-everyone should be so lucky.

I called mom’s nurse this morning and she said she seemed less disoriented and more antsy, wanting to get out of bed. That sounds encouraging! As soon as I see for myself, I will provide an update.

She did seem better, but the left hand still has no feeling or movement. When the nurses ask her questions she gives the right answers. Then 5 minutes later she’ll ask me to go in the other room to get something, and I tell her we’re in the hospital, and she seems surprised.

Dr Schroeder came in and told us the results of the MRI. There was no bleed, but her left side is getting worse because the deeper tumor has grown despite 4 weeks of radiation and chemotherapy. That’s not a good sign. He said we have some tough choices ahead. All I know is I don’t want to make them.