After the ridiculously long day we spent at the ER the day before, mom and I were both wiped out yesterday. She still had a little residual bleeding, and her speech is a little slurred, but she is still pretty with it, just a few off the wall things occasionally, but mom was always a free spirit….She was too tired to make it to the infectious disease doctor appointment in the morning but her office was gracious enough to reschedule on Thursday. Later today, we have another appointment with Maria Bishop and are switching over to Patricia as her PCP. I feel better already.

It was the best of times, it was the worst of times. A line borrowed from A Tale of Two Cities. And totally appropriate in my life right now. Jenna is getting married two weeks from Friday and it is such a happy time for our family. We absolutely love her future husband and are so excited for the great wedding we planned. That is, planned up until the beginning of July. Since then the mother of the bride has been MIA. I am so happy for my daughter and want this wedding to be the wedding of her dreams. The problem is that my mom is dying a slow, horrible death. At the end of each day there is nothing left of me. Hell, the beginning of the day is shit too. It’s all shit. I feel total guilt about not being as present as I had always imagined I would be during the happy wedding planning time, as present as I would have been had we not been dealing with mom’s cancer. I just don’t have the energy or the foresight to do what I should be doing. Poor Jenna is dealing with all the last minute things completely alone, and it is the last thing I would ever want for her. I can’t keep all the things straight in my head. It’s so crowded in there right now. I am totally sucking at this and it makes me so sad. Like I don’t have enough to be sad about right now.

I tried to get my mother of the bride’s dress hemmed on Saturday. The girl at the tailor shop told me to come back on Monday when the more experienced seamstress was in because it is a somewhat complicated hemline. I was going to go on Monday but spent 13 1/2 hours with mom. So I went there yesterday morning and Rick went to Handmaker to spend some time with mom until I could get a few things done. I put my dress on and the seamstress said she couldn’t do it. I lost my shit and started to cry. “My daughter is getting married in two weeks, my mother is dying of cancer and I spent a ridiculous amount of money on this dress.” Boofreakinghoo! How embarrassing! She said she knew who could do it and sent me there. Well, thanks for not telling me that before I lost it…..Next lady could do it, “but it will be expensive.” I DON’T CARE! And it really wasn’t that bad.

I have had a couple of people tell me we should put off the wedding because of what is going on with mom. I am taking a deep breath and counting to 1000 before saying this. I am sure you mean well. But really???? Do you have any idea what goes in to putting a wedding together? Yeah, I didn’t think so. It is not a damn Barbecue. People are flying in from all over the world (thanks, Steffie, for allowing me to use the world part). So, no, not an option. If we had planned a wedding for 20 in our backyard, maybe. A destination wedding for 20, that had a shit ton of travel insurance, sure. But a wedding for over a 100 in Texas Hill Country……that is not happening. If you see me, and think you might want to suggest that to me, bite your tongue, and walk away, because that may be the day I completely have a nervous breakdown and it won’t be pretty.

To the wonderful friends who have offered to spend time with my mom while we are gone for the wedding, and who told me how much we all deserve to enjoy this very special and wonderful time, you have my everlasting gratitude. Your support has been so incredibly wonderful. You know who you are. Just knowing that there are people who get how torn we are right now is so helpful. Rest assured I will take you up on your generous offers. Thank you from the bottom of my heart.

Mom’s pillow was soaked with blood when I got there yesterday. You’d think someone would have called to let me know. I went straight to the nurse and asked what was going on and if her oncologist had been notified. She said it started bleeding first thing in the morning when they changed her bandage and that the hospitalist knew about it. I let Patricia and Maria know. Maria was on the phone with the nurse immediately and things started happening. Next thing I know she’s back in the ambulance headed for the ER at UMC. Yes, TMC was across the street. I just didn’t want the jackasses at CNS to get their hands on her again. She got a neuro consult quickly and sutures were done right away, but then the waiting began. She was really slurring her words and sipping water was difficult so another (!) MRI was ordered.

Before we left for UMC, mom and I had a long talk about what last week’s MRI showed and how the tumor board meeting went. I couldn’t write about it until I was able to discuss it with her. The short version is, the tumor that was previously operated on has filled in. Further surgery is not really an option in her current state of health and at her age. At this point there is really nothing more that can be done that would extend her life. Our next mission is to keep mom as comfortable as we can for the time she has left. We will try to move her to Peppi’s house soon for inpatient hospice. She understands what’s happening. She’s very sad about it. She would like me to get her home to see her cats, lie in her bed and see the new floor at some point soon. I don’t know quite how to accomplish that, but we will try….. She is very sad that she won’t make the wedding, but she is afraid that she will die on that day. I asked her to please pick another day if at all possible. She said she would try. I hate the idea that it could happen when we are all out of town, but there is nothing we can do about it. She wanted to be in the pictures….

We were in the ER for 7 hours before they finally got her in for an MRI. I ran out for a quick (1000 calorie) bite at McDonald’s. Mom still couldn’t eat anything until the results came back and she was starting to get pretty surly. She said she was thirsty and I gave her water and she acted like it was poison, then I gave her an ice cube and she said I’m hungry and you give me an ice cube? Hey, 12 hours later and I’m still here-no complaining! Nothing new on the MRI. Luckily I threw a pretzel in my purse when I moved my car-I’m golden again. At 12:30 she was picked up to be transported back to Handmaker-I met the van and got her to her room and finally made it home at 1:15 in the morning. Not exactly the day I had envisioned, but, what the hell, it could have been worse. I have to be back at 9:00 a.m. for the infectious disease doctors appointment. No rest for the wicked.

Taking mom off the anti-depressants was a good idea. Of course, putting her on them was my suggestion-epic fail. I thought it would help….it did not. When Rick and I got there yesterday morning, her friend Nelly was there. They were an adorable pair-mom is not speaking clearly or loudly and Nelly forgot her hearing aid. If the topic weren’t so sad, it would have been funnier than hell. She is starting to really talk about death and dying. But before any of that shit happens, there is more good food that she wants to eat…That’s my mama!

I woke up to an amazing email from mom’s friend Barb. I have never met Barb. She doesn’t live here. But when Barb sends an email, it is always exactly what I need at that moment. It is uncanny! I cried when I read it and I cried when I read it to my husband. Everyone going through something like this needs a Barb! I can never thank you enough-you have helped me more than you will ever know! I hope that we can meet one day….

Mom was pretty sad yesterday, and no matter how much I tried to steer her toward good thoughts and fun memories, she cried. I cried. It’s heartbreaking. We actually managed to go to Sunday Funday brunch with good friends-we needed it. If they hadn’t made it so easy, we would not have done it, because fun right now, feels wrong somehow. Mom tried like hell to get us to go and run in the opposite direction getting her what she wanted, but we just put it off until later and it worked fine for all concerned, giving us a little fun which we sorely needed.

When we we got back later, Tyler and I took her out to see the supermoon. It was pretty damn cool, though mom didn’t seem that into it. We were. She is still so concerned about the damn tile, (yes, I agree it needs to be replaced and she should have done it years ago-but there was no way with what she went through with Mickey the last 9 years) so we finally picked it out and I will go tomorrow to order it and get it installed. I’m still not completely convinced that she will get to enjoy it, but it’s on her mind, and she wants it done and who am I to argue? It’s her money-her decision….I won’t order the granite countertops though unless we have a miracle cure….

Mom’s blood sugar was over 500 yesterday and she refused insulin because she said she doesn’t have diabetes. I’m no doctor, but I’m fairly certain that is a bad idea….her face is getting puffier, her feet are swollen, she’s looking bad. That’s a warning to anyone who plans to visit…..get ready-you will be alarmed.

Patricia is back in town today so I will be able to breathe a sigh of relief. Just knowing she’s around for advice and support makes this all a little less scary. And right now I think I need some advice.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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