Last night would have been when we would have gotten back from our trip to Texas. Before we were scheduled to leave, I put a hold on the mail and the newspaper in our absence. It is very easy to do this online, but I had no idea how to undo it. I honestly never remembered to try. So my poor husband who loves to sit on the patio having his coffee and reading the newspaper, sat and watched the desert instead. I offered to get it for him on his iPad, but he didn’t like that idea. Today all services resumed, he was happily reading the paper and having his coffee again, and we took another step toward normalcy.

At 7 a.m. mom called to let me know she would be leaving at 11. I am 5 minutes away. Okay, so I had a 4 hour heads up. I got to the hospital at 10, and got the best space in the lot, right next to the front door (that’s a big thing-this lot is full-always!). At 3:30, the transportation service came to get her. I could have pushed her down the street in a wheelchair about 20 or 30 times during that time period. There surely must be something discharge/payment wise that made that time period happen. Call me cynical.

I have fought long and hard to get her some good physical therapy, but seriously when we walked in to HealthSouth, I wanted to cry. She went from a room that was like a suite to a shared tiny room with the bed that was NOT near the window. She was clearly disappointed. As was I. I moved her clothes in to the dresser and got her settled and her caregivers began to arrive. I excused myself and told her to call me if she wanted company. After a couple hours, I called her to see how she was doing and to see if she met her roomie. She had, and she seemed okay with everything. I, on the other hand, did not feel good about the situation. So when I talked to her, I said I would call to see if we could pay extra for the single, and that if she was unhappy with the arrangement, I would get her out and work something out at home. She said, no, this would be fine, and by the way, the food is good. That’s saying a lot, and I will leave it alone. But, I will be watching this and ready for anything.

Fernando was already at work today and I think the house modifications are moving along nicely. He is a good guy, and really wants to help. I do not yet know what mom’s therapy schedule will be. She is in room 319, and if you are planning to visit, (and I do think she will love it) I highly recommend a quick call to see when she has down time. We don’t want to interrupt her schedule nor do we want to have to wait for her once there. If you want to bring her anything in the morning, she loves iced caramel macchiatos from Starbucks and anytime after that, she loves mineral water or fresh fruit. Instead of the fifteen feet of countertop space, she now is down to about three.

I understand her mailbox at home is full. I will try to get through it and make some room, but honestly, when I am there, it always seems to slip my mind. Feel free to message me here or email or call me if you have questions or messages. I do take cards to her every day and she loves getting them. I think most of the initial drama is over, so I may not update quite as often, but do promise to post news as it comes along.

Mom was scheduled to see Dr Hazard, her radiation oncologist, at noon today. I volunteered to take her so she wouldn’t be that sad lonely little lady in the waiting room sitting by herself. TMC would not allow that for liability reasons, so I planned to meet her there to take care of the paperwork and be her advocate. I really believe having someone look out for your interests gets you better care. I was just calling Dr Hazard’s office at shortly before 8:30 when I received a phone call from Barry Spencer, the case manager at TMC. Apparently the appointment for Dr. Hazard was at noon but Dr Badruddoja was at 9:30. So, suddenly my transporting her didn’t pose such a problem liability wise. Yeah, right. Once I got to her room, they had no wheelchair ready to take her out and no gait belt on her- just a walker. By this time it was after 9. So mom, being mom, said let’s go. And she started to walk. Anyone who has been there knows it is one super long walk. We flagged someone down for a wheelchair ride. I got to know the valet guy real well today because I kept parking in the middle of his area and not giving him my keys-he put up with me with a smile! I promised not to do it again. Twice.

Our first appointment was with Dr. B, who, I honestly did not want to like. I really wanted her to go to Arizona Cancer Center for, oh so many reasons. I won’t go in to them all now….We talked about all the screw-ups in mom’s care and he was really upset about them. He was outright pissed that she had not been transferred to HealthSouth for intensive rehab. He could not believe that she was not prescribed steroids to keep the swelling down in the brain when she was released too soon with no help. My mom told him that if I hadn’t taken her back to the ER, she might have slipped in to a coma and died. He told her she was absolutely right. He further agreed that she was not strong enough yet for radiation and chemo, which will really take it out of her over the 6 weeks of treatment. I kind of dared him indirectly by telling him that the case manager would not allow us to put off treatment for a week to get her strong enough to withstand it all. That was really all he needed to go to battle for us. So tomorrow she is being transferred to HealthSouth for intensive rehab. And then we go for treatment. That also means I have enough time to get some projects completed to keep her safe. Starting tomorrow, the contractor (who really loves mom), is starting to remove all the carpeting and build a huge ramp that will get her safely in and out. I am having him build it so it is removable, because when she is feeling good it will drive her crazy. We will be able to drag that big, heavy thing to the empty bay in the garage in case we need it again down the road. May as well be prepared.

My other huge concern was how I would manage her care time-wise. Rick, Tyler and I discussed it last night and came up with two people who might be willing and able to help us out overnight. Luckily, it seems like both of them will work out. The thought of leaving my mom with strangers made me sick to my stomach, but the two ladies we came up with are perfect. I feel good about them and trust them to care for her and honestly, once they get to know her, I know they will get along famously!

So the radiation mask is complete, the rehab is in place, the construction is under way and the night time care is in place. Today is the best I’ve felt about all of this since this nightmare began! An old friend of mine, Elsa (my childhood best friend), sent me the most inspirational message of all. She reminded me that yes, I could take care of this and to not get overwhelmed with the big picture. That I needed to break it down and live in the present. I have gone back countless times to re-read her message and it helps me every single time I read it. (Plus, there was a link to a recipe for shrimp culichi, which I am addicted to.)

I can actually go to sleep tonight without contemplating fighting the bureaucracy that has been so awful over the last two weeks. No fights tomorrow! Is this real? I’ll let you know……

After an 11 hour hibernation, I began to feel like myself again. I guess sleep really does matter. Exercise would probably help my mental outlook as well. I haven’t been to the gym since the 13th, I think. I will try to fit in more sleep, exercise and food so that this all works a bit better for all concerned. Without some downtime and good sleep, it will be hard to take care of everything. Mom had a good night last night too! She walked using a walker, three times today and worked with an occupational therapist. She is getting stronger everyday. Thank god! She will need her strength especially since both radiation and chemo start a week from tomorrow. I think she will get considerably weaker when that begins, so now we are in prep mode.

My first order of business is to get all of her carpets removed. Luckily there is hardwood under all that old carpet. And don’t worry, she is on board with this. The carpets are more likely to trip her up with a walker and I want to make sure we minimize any possibility of a fall. I also need to have a good sturdy ramp built. If anyone knows of anyone who can do this, please reach out to me, because I will try and get this all accomplished this week. I am hoping to have her back home before the beginning of treatment. The next and equally important step is to find a night time sitter so I can still go home at night and spend time with my husband and recharge. I think it is quite possible that after she gets through the first 6 week period of radiation and chemo, her life may start to resemble what it was before the diagnosis. Definitely keeping my fingers crossed and my thumbs pressed (that’s what we say in Germany instead of fingers crossed-trying to cover all the bases). We are also hoping to get her a nice bed with an electric base so she can be more comfortable.

So many friends have come to visit her and the cabinet in her hospital room is full of thoughtful gifts and flowers. We appreciate you all so much!

So, all in all, I think we are on the right track.

Somewhere along the line I have become a cryer. Not the teary eyed, red-rimmed type. More along the lines of the boo-hoo, wailing type. It is not pretty. It mostly seems to occur in public places (boohoo) or in my car (less controlled-lol) with the occasional shower (wailing) cry. Mom and I had a long talk about the constant complaining and criticizing she has been heaping on me lately and I have some hope that we may turn a corner. I am also beginning to think the tumor could be exacerbating her behavior. Fingers crossed! I’m fighting so hard FOR her right now, that I simply don’t have the energy to fight WITH her. I’m limp with exhaustion.

She called me this afternoon to let me know that Dr. Wiruth (I am so effing sick of doctors!) is planning to discharge her. On a weekend again. Do they do this shit on weekends only because the B team case managers are on, and physical and occupational therapists don’t work on weekends? Seriously, wtf? It all seems so sketchy. I think that in addition to filing a discharge appeal, which I wish I would have known about last Sunday, I will contact an attorney. If anyone knows of a good malpractice attorney, please let me know, asap! Every time I try to grab the tiniest bit of rest, I am called back in to battle. Not with cancer, but with the very people who are supposed to help her get well. There is something so terribly wrong it is inconceivable.

I finally took some time and had lunch with a friend today. Lauri, you have NO idea how much I needed that! Plus the pho was wonderful. Pho always makes me feel better no matter what ails me. Dim sum is sounding kind of good too…..anyone? We had planned to go to dinner tonight and listen to some friends play at Monterey Court, but I physically could not drag my tired body into the shower and get moving. Instead, my wonderful husband, who also cleaned house today, is making me dinner, and that is priceless! This’ll be the first time I had two meals in one day in quite some time. Feeling spoiled!

The fortune I found on the counter when I walked in to Ha Long Bay today. That pretty much sums it up!

This just gets better and better every day. We found out today that Healthsouth will not take my mom. It’s a medicare issue. Apparently, since she is beginning radiation and chemotherapy on August 3, and they do not take patients who are actively receiving  radiation, it is not possible. Medicare requires 1 1/2 to two weeks of rehab and since the screw up with releasing and readmitting her it took us to the tipping point. One damn week with intensive occupational and physical therapy and we might see some real progress. But, no. Putting radiation off a few days could make it work, but her cancer is so aggressive that the risk is too great. Common sense is not in this picture, it is all about formulas and equations. And that folks, is why we need a single payer system of healthcare in the United States. And to all of our German friends and family; you guys have this down! We are still effing it up right and left. Mom is still not strong enough to walk very far on her own or any of that kind of good stuff. And she definitely can’t navigate steps at this point. Soooooo. Yeah, this should get interesting. Just mentioning to her that I needed help at least at night so that I could sleep in my home and occasionally see my husband had her pointing out that she took care of her husband for 9 1/2 years with no help. Ouch, that hurt! But it is kind of different. She lives there already. I don’t want to spend what time we have left resenting her, and I know resentment will rear it’s head if we aren’t careful.

I talked to two people at Healthsouth twice to see what we could do to make this work. I talked to her radiation oncologist twice. I talked to her PCP and his receptionist. That’s the fun kind of stuff I get to do when I’m not at the hospital. I won’t bore you with the details that made me want to scream (and yes, I want to scream a lot these days or sob uncontrollably in a fetal position) but, the bottom line is they are going to keep mom at TMC until she is strong enough to navigate steps. I know that sounds weird, but since I am the one who gets to get her in and out of her house and to my car and back every day for radiation, I am taking a stand. As I pointed out to her oncologist, if she falls and breaks a hip getting in to or out of her house, all the radiation and chemo in the world won’t save her. She will die. And I am not ready for that. My guess is she is not ready for that either.

Today was not a good day. Mom was down and downright bitchy. And for those of you who got to visit with her today, you probably didn’t get to see that so much. She saves that for me. I am the one who loves her unconditionally and she knows she can get away with it. I will come back anyway always. But I do have feelings and I do want to hear the occasional thank you when she has me running all over creation to get this and that and the other thing she needs to keep her happy. I’m so sorry I didn’t get your freaking Mexican food the moment you wanted it. I was 5 minutes later than I had anticipated. Whoops. Occasionally I would like to eat too. I am down to one meal a day as it is. I’d like to be able to enjoy that one. Alcohol and cigarettes are keeping me going and that is something I am not proud of. But it helps to cope. I would like like hell to have her not have cancer. But this is what we have right now, and we are going to get through it. Period. No choices. We will fight this, but we need to be on the same team.

We are both going through stages of grief. Each of us in different ways. Mom is afraid of being dependent. I don’t want my mom to die. I know in my heart that she is just trying to control what she can (me!) because there are so many uncontrollable things in her life right now. I totally get it. I on the other hand, realize that I have no control either. I need to do what I can to help her get through it, no matter what. But my only daughter is getting married in October, and I don’t get to spend time with her on the wedding preparation things we planned on this week, or any other week for that matter, and it makes me terribly sad to miss it. It sucks and it isn’t going to suck less tomorrow or the next day and that is scary as hell.

You know how people say no news is good news? Well not this time. I couldn’t write anything because we had devastating news yesterday. The pathology on the tumor came back and it is Grade 4 Glioblastome Multiforme. Pretty much the worst possible results. Don’t bother to google it. It made me want to throw up.

We walked in to mom’s room feeling pretty good yesterday evening. It turns out that in the few hours I was at home doing laundry and running to her house to pick up this that and the other, her radiation oncologist (or is it oncology radiologist?) came in and gave her the results of her biopsy. This is not even close to what I expected to hear. I was so busy thinking she was gonna be the lucky one that didn’t have cancer, it never occurred to me that it might come back at Grade IV. (This is contradictory to my normal prepare for the worst, hope for the best mentality. That should have given me a clue that a sucker punch was in my future. I digress…..) I have learned that when cancer is in the brain it is rated by grade, everywhere else it is by stage. Same difference. It’s bad.

I got up after four hours of sleep following an evening of having a lot of Jack Daniels and a couple of pretzels for dinner. Rick and I sat on the patio planning how we are going to deal with all of this. Should we move in to a house on one level, should we build a guest house, will she regain her independence at some point? Yes, Lauri, we are over-thinking it. I got up and made mom the liverwurst on rye, that only my mom would request for breakfast at 8 a.m. I stopped at Basha’s to pick up an iced caramel macchiato that she has recently developed a great love for. I feel I may have still had an elevated blood alcohol level at this point. Oops. Will try to avoid that kind of risky behavior in the future. Probably. After doing my mom’s toenails-she wanted to try purple for something new, my mom’s friend Toy kicked me out and told me to go home, so I left. Walking down the hallways of TMC is starting to feel like I’m walking through 3 feet of water. Weird. This is the first time I have had in in my house alone in over a week. It feels good to not  hear my voice or any other voice for a little bit. I have gotten to the point where hearing my own voice makes me want to scream. My recently acquired vocabulary sucks. Glioma, astrocytoma. Shit.

So, now we have to pick ourselves up off the floor and move forward and hope like hell that we can eradicate the cancer from my mom’s body. My wish for her is to be free of cancer, and to continue to live as long as possible and enjoy her life and experience all that she wants to experience with the same gusto she has always had. She deserves it. I love her so much.

First and foremost I want to thank my amazing husband and kids! I just realized I had not mentioned them like I should have. They have been beyond supportive and helpful in every way possible. They are the reason I could do what I had to do. They propped me up when I questioned myself and when I lost it. They were there every step of the way. They are the best!

I also want to thank my extended family, both blood related and by choice, for your moral support, care and love. Your generosity of your precious time and knowledge of all things medical have been helpful and appreciated beyond belief! Iris sending a baby monitor over to my mom’s house-that will make my life infinitely easier. Wow. You all rock!

I want to thank my friends, old and newer who reached out with offers to help and a shoulder to cry on. I haven’t been able to take all the calls and I apologize for that but reading your texts and emails when I have a minute has been fantastic!

My mom also has an incredible network of friends who love and care about her.   Everyone should live to be her age and have people like that in their lives. There were times the phone rang so much I wanted to cry, but every single person called with great concern and with offers to help in any way they could. I am so grateful and overwhelmed.

As one wise person said to me, “this is just the beginning. The surgery is the first step-there’s a lot more to do.” I needed that reality check. One hurtle at a time.

As I was getting ready to go back to the hospital, Dr Schroeder’s assistant called to let me know I could bring her in to the office today. I told her that since she didn’t get back to me yesterday I had to get her back to TMC, where she belonged, and that in the shape she was in there was no way I could have gotten her to his office anyway, thank you very much. I also suggested he pop by room 851 if he felt so inclined. And mentioned that the fact that she didn’t fall and break her hip while at home was a freaking miracle.

I can’t believe how quick her decline was over the course of the last two days and then how quickly she bounced back again. Wow. I walked in to her room shortly before noon and she looked great again. Apparently, there was some swelling in the brain, and her sodium and potassium levels were quite low. They changed a few meds around and added some new ones and boom presto chango. The occupational therapist came in right when I did and was able to have her sit up largely on her own and get her up and walking with the walker. She recommends 1-2 weeks in re-hab until she is able to do basic self care things on her own and get steadier on her feet. She put her in a chair and had her sit up and have her lunch of grilled cheese sandwich and potato chips. Mom took one bite and said: “I ordered a grilled cheese because I thought they couldn’t F*@k it up. They did.” Yup, getting back to herself. Not sure when she will be transferred to rehab, but whatever, I have a feeling they won’t make the same stupid mistakes twice. I think everyone is aware there was a major screw-up and the crazy daughter is watching them closely.

While she was eating, a nurse from pre-surgery stopped in and asked how things have been. I gave her the big picture and she said oh my god who on earth released her- who signed the discharge papers and who was the nurse. When I told her she said she was surprised at the nurse but not so much the doctor. She also said it broke her heart that they sent her home like that and that it basically makes everyone look bad not to mention putting mom at risk. She said she noted in the chart that she had an unsteady gait before the surgery and couldn’t believe it didn’t come up after the surgery. No shit.

To make a long story longer, this may start to go right after all, and we are thrilled to see some progress, finally. While lying in bed, she is doing breathing exercises that were taught to her by a physical therapist friend who shall remain nameless. We love and appreciate you. You know who you are. She doesn’t want pneumonia, and realizes that she can help prevent that. So she is breathing in slowly through her nose to a count of ten and out slowly through pursed lips. That really stuck with her. She is also trying to strengthen her left hand. She seemed so out of it yesterday but did retain a few things…..

Clearly my mom was discharged too soon. Any rational human being could see it was sketchy. Hmmmm. 81 years old. Brain surgery. Fall risk. Yeah, let’s send her home with her daughter who is not a medical professional of any sort. And let’s skip physical and occupational therapy, AND rehab. Let’s also not give any decent instructions or in home care. She can’t sit up, stand up or walk? No problem. What a disgrace. Modern medical care my ass!

So after watching her get weaker and more lethargic with every hour, not to mention the nausea, vomiting and lack of appetite, and with a couple of friends who are medical professionals, who were as horrified with the situation as I was, I finally called 911 (around8:30) and we went back to the ER…

Here are some of the things I learned:           If you don’t have someone looking out for you, you are screwed.                                     If you say you’d like to speak to a patient advocate, they pay attention.                         When you start to lose your cool, you scare them.                                                        This is not a popularity contest, if you’re angry, let someone or everyone know, they don’t want to be on your shit list.          Lack of sleep does bad things to your well being.                                                                 Contrary to what neurosurgeons think, they are not gods, nor are they perfect, and while they may be very good at surgery, they can be clueless, arrogant, inconsiderate asses.

At 3 a.m. she was ready to go to a room (851) and I went home for some sleep. As soon as I get a shower and some food I will head back and give updates.

On Sunday morning Dr Shroeder came and announced that he was releasing her. Today. To go home. As I said earlier, holy shit!  She will require 24/7 supervision for at least two weeks. So after I got her settled at home, I went home to pack. As mom said “pack? What do you have to pack?” I explained I need clothes and stuff kind of like I’m going on vacation without the change of scenery. Lol!

Between getting her home from the hospital and trying to spend some time with my daughter before she left on Monday morning, it was a stressful day for all concerned. We have been trying to eat together as much as possible but the nutrition values are questionable. Her friend Bob sat with her during the night so I could get some sleep. He just called me when she needed to use the restroom, which seemed quite often. I was lying in bed in the middle of the night trying to figure out how to fashion a voodoo doll with Dr Schroeder’s likeness. Don’t get me wrong, I appreciate his expertise and surgical skills, but his bedside manner and common sense are suspect. What kind of a whack job releases an 81 year old woman who had brain surgery after one day in the hospital to a person who has no medical/nursing knowledge or skills? Yes, I care and I love her and will do my very best to get her through this, but seriously, I am terrified of doing something wrong, or having her fall on my watch. She is still very unsteady on her feet and her left hand seems very weak and unable to grip the walker handle. She has very little appetite and sleeps a lot. This morning after two sips of the coffee I made her, she threw up. Not sure if it was my coffee or something more is going on. Again, I’m feeling pretty scared and really alone at times.

Wish us luck. We sure as hell are gonna need it.