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.

My friend Vivian, put it best. I feel conflicted. I want my mom to get better and be able to go home. It’s what she wants so bad. But, when she’s in the hospital, I can breathe. Someone else is taking care of her and can help her if something goes wrong. I can visit her and make sure everything is going well, but I have some sort of life. How do I reconcile those feelings? I have absolutely no idea.

I will do things a little differently today, since her condition and situation is evolving constantly. As I receive new information, I will add it to the post rather than wait to write everything at the end of the day. Before heading down to the hospital, I decided to call her nurse and check her condition before speaking to her. The nurse told me that her left arm is still not functional, that they were waiting on cultures taken from the surgical site and that Dr Norton’s order was to continue the same. So she is not being discharged any time soon, it would seem. They also found MRSA in her nasal swab. I don’t even know what this means in the big picture. This poor woman cannot catch a freaking break.

I got a phone call from the case manager right before I left for the hospital. She talked about the MRSA, her current state of mind, what we may have to deal with in the near future. They are doing a contrast MRI to determine what is going on with the tumor and whether we should suspend radiation until the incision heals or if we should plow through. They will also be able to tell if there is a bleed in the brain that might be affecting the left hand. All in all nothing good today.

When you visit her in the hospital you have to wear gloves and a gown to protect yourself against contracting MRSA. So no hugs or kisses. I sat and talked to her and held her hand -my heart breaks for her.

There have been a lot of times that were hard to write about and this is one of those times. Mom’s surgeon warned us about two general anesthesias in such a short time and told us she would take a little longer to bounce back this time. But, wow. I was not ready for this. She doesn’t seem to know that she is in the hospital much of the time, and when she does, she wants out. First thing this morning I called her to tell her I was on my way, she told me they were letting her out today. Just as I said, “no, they’re not.” the nurse in the background said, “you are not going home today.” She was disappointed. She was groggy, confused and announced that there were several things advertised on television, that she really must buy. Several of. I told her I was glad she didn’t have her credit card with her….and that I don’t need a hot plate, or a new curling iron, and neither does Jenna, but, thank you.

I thought maybe if she got a little more sleep, she would snap out of it and be back to normal. So Rick and I went to Home Goods to pick up a few comforter sets  for her to choose from, for the new bed. Then we went to her house to do a few little chores and visit the cats. Next stop, Casino del Sol, because we always gamble right around our anniversary since we went to Monte Carlo on our honeymoon (and gambled-and just like Monte Carlo, we didn’t win). For 30 years it’s been a tradition, and we don’t want to mess with tradition. It’s worked for us this long, so why tempt fate? We also have no idea what our schedule will be like in the upcoming days, or weeks, or months, for that matter… Anyhoo, we went back to the hospital on our way home. Tyler was already there. And he looked worried. He motioned to me that I should check her left arm. It did nothing. Couldn’t grip a hand. Couldn’t feel if you touched her. What???? I held her hand and asked her if she could squeeze it. She said, “of course, give it to me.” It was already there. I cannot emphasize enough how this is not okay. I would love to believe that this is from the anesthesia, but I get the feeling it is not. Gina called to tell mom she was bringing her some good homemade German soup for dinner, which made her happy, because she is still all about the food. She told Gina that I was making steak tartar tonight and that she could have some when she came. She did not know she was in the hospital. We had another couple of instances when she wanted me to get something from another room, like we were at her house.

I hope like hell, that I will get there tomorrow morning and everything will be back to normal. But, I don’t believe it will go quite like that. I want to know what caused this to begin with and why there is such a huge change in her. This has to get better.

Well this day certainly didn’t go the way I thought it would. We went out with friends last night and stayed up way too late, so I was still pretty tired when I got to mom’s. Connie texted and asked me to call before I headed over. She told me mom didn’t sleep well again and that she was very weak and tired, and that her incision seemed to be bleeding. When I got there, Bob was with her and warned me that he was concerned that I wouldn’t be able to move her without help. She seemed groggy and extremely weak and even a little confused. I did not like the way this was going. I could barely get her to the bathroom and back to her bedroom alone. I texted Iris and asked her opinion. I looked at her incision and thought, oh my god, what the hell? It looked like it was very puffy and like it was starting to open. I have a low gag threshold and this was taking me to the edge. I texted Patricia-who has saved my butt multiple times these last few weeks. She came over and didn’t like what she saw either and thought it was time to call the neurosurgeon. Dr Norton was on call, which made me very happy because he did Rick’s brain surgery 25 years ago. Yeah, he’s old, but he’s still got it. He told me to take her to the TMC ER. They got her right in and when they moved her in to the bed, blood just splashed out of the opening. Gag. They did some blood work, ran a culture of the opening and did yet another CT scan. How is it that mom doesn’t glow in the dark with all these x-rays? Dr Norton asked the ER doc to see if she could look in to the incision to see if she could see the craniotomy. She could. He came right over. He said he would have to take her to surgery and clean out the wound, getting rid of the necrotic tissue and removing the catheter that Schroeder left in for drainage. He said her body didn’t like having that plastic in there and it needed to go. Then he would re-suture it. Within a few hours, she was re-admitted and headed to surgery with general anesthesia again.

The surgery went fairly fast and he felt good about it. He was glad he didn’t have to remove the bone flap again, but said this would be kind of hard on her-that she had been through a lot these past weeks. She would go to recovery and then back to the Intensive Observation Unit (Room 858) and would probably have to stay in until Monday or Tuesday, depending on how things went in the next few days. We ran out for a quick bite, because we were all starving, and then went back to the hospital with the chemo drugs. She really didn’t look very good, and she asked if we were there to take her home. Umm, no. She didn’t like hearing she would be in for a few more days. I want her to stay until she is steady enough to get to the bathroom without too much trouble. I know how she was this morning and it’s way more than I can handle. We’re not doing that BS again.

So here we are yet again. I don’t know why this all happened but I do wonder if it’s because she kept touching it. I kept telling her not to, but she couldn’t keep her hands away. Or was it something else? I just don’t know.

Before I sign off, because I am wiped out, I would like to say a big Thank you to Rosa and Mert! They brought mom dinner last night and offered to do it again on Monday. Mary also offered to come on Sunday and Bob on Monday. You guys are great! This is exactly what we need-and when she is back I will definitely take you up on your offers to help! I appreciate it so much! And need it!