My first night back, I remembered two things. It is next to impossible to get a good nights sleep here and mom’s cat, Schnapps is a major pain in the butt. First off, the beast looks like a damn panther, weighing in at just about 20lbs. My dog is terrified of him-probably wondering why there is a wild animal inside the house that could potentially kill and eat her. If he pushes his way in to the bedroom you are trying to sleep in, he. will. not. leave. you. alone. My mom lives in a neat old house built in the 30’s and the one door that won’t close all the way, is of course, my old bedroom, which just also happens to be my new (part-time) bedroom. When he did bully his way in, he left a nice big tar stain on the sheet which I immediately cleaned up. When I picked him up to remove him, he proceeded to do the same thing on my arm-I threw up a little in my mouth. Then the beast was outside my door trying noisily to get back in after I barricaded the door. Shoot me.

I decided not to give mom a sleeping pill last night. It doesn’t make her sleep any more soundly and when she does get up (just as often as without the pill), she is downright dangerous. Her body is too limp and uncontrollable, I’d rather have her have her wits about her and be a little steadier on her feet. If it won’t knock her out for the night, what is the point? Patricia agreed with my theory and I feel better about it.

We got so much accomplished today, and had a good time doing so. We picked up a Keurig coffeemaker because we both have different opinions regarding a good cup of coffee. As far as I’m concerned, no caffeine, and it’s not really coffee. It’s just hot brown water. I rest my case. I can’t argue mom’s case, because she is obviously wrong-lol! She seems happy and healthy…..I now have my own pass to the base and can take care of all kinds of things without my mom being present, however, I have no idea how that will happen….If I’m awake, we’re together……..at least 90% of the time. I am SO not complaining! We have spent more time together in the last month than we have in the last year……. So glad we have this time! Rick and I got to go out for a really nice dinner at Caffe Torino, after a nice swim at home. Thank you Bob for the break before Connie came for the night!  I so appreciate our alone time….I miss my husband! Tomorrow, several people want to visit mom, and Rick is staying over for movie night and a nice dinner. Which means we will like it, and mom will most likely think something is missing…..lol. But that’s okay.

She’s home! Mom called this morning to tell me she would have to spend another night in the hospital, so I mentally planned my day. They felt the anticoagulant level in her blood was not quite high enough. I went to her house to pick up some fresh pajamas and the new transport wheelchair we ordered from Amazon. She called me again just before I left her house to tell me they changed her mind and she was going home right after her radiation appointment.

She was very happy to head home. She learned how to give herself injections in the stomach and she was ready. We had fallen in to a good routine that worked well before her return to the hospital and we needed to get our stride back. Rick had planned to have houseguests on both Tuesday and Wednesday since I would have been at mom’s and it’s just too quiet in the house. So, the two nights I was there we had company. Good to see the guys, but I have to admit, I needed a little more down time than I got. Oh well. I’d say next time, but that would mean she is back in the hospital, and I definitely don’t want that, so never mind…..

So now we hope the anticoagulants do their magic, and the bloodclots melt away, and we can get back to just worrying about the cancer instead of all the other crap we have had to worry about lately. She has to take a staggering amount of medication and now the shots too. Her discharging nurse impressed upon her the need to follow the rules and not take any nocturnal journeys to the bathroom on her own. The anticoagulants would mean a lot of blood for a little cut…….Hopefully she will listen this time.

I seriously need someone to help me out on Fridays from 8 a.m. to 8 p.m., if anyone knows of a trustworthy caregiver, please let me know! That little break will make all the difference in the world for my sanity, I am sure. If you know of someone, please message me here or email me.

Not a whole lot of news today. Mom is still in the hospital, dealing with the same stuff she was dealing with yesterday. Hopefully she will be out tomorrow, but a heads up is not what this hospital is known for.

She went to her radiation appointment in an ambulance today with two attendants, a nurse, and me. It would have been more fun with sirens wailing, screaming through intersections, but it was just a quiet ride. Ho-hum.

I brought her her first Sonoran hotdog for lunch today and she loved it. Who wouldn’t? If you don’t know what it is, google it, read it and weep. They are only served here, as far as I know, and they are spectacular. If you live in Tucson and haven’t tried one, you have no excuse-just do it! More tomorrow…..

Well, this has been a pretty shitty day. It feels like whatever can go wrong, does go wrong. Mom is in room 851, the Intensive Observation Unit with deep vein thrombosis and pulmonary embolisms. The only good thing is that she is as upbeat as ever. Which is no surprise whatsoever. Of course, those of us who know and love her are at wit’s end with worry. I find it is much easier to be upbeat when I am with her than when I am not. On the other hand, I slept like shit last night and feel like the walking dead again.

Mom was telling me how everything went last night after I left her. It was pretty hilarious. I left her around 10, I think. By midnight nothing had been done so she asked that the doctor be sent to her room. She asked if they were planning on giving her the anticoagulants any time soon or if they were just waiting for her to throw a clot and drop dead. Ten minutes later she had an IV of Heparin. Well played, mom. Well played. We talked about how Monday was a long day, but that we had a lot of fun together and laughed a lot. She enjoyed her shrimp lunch. This woman is an inspiration!

Apparently the anticoagulants caused a very small bleed in her brain, so they shut off the IV for an hour before resuming it. Sure as hell hope these folks know what they are doing……. My confidence in this place is not so great at this point.

As I was sitting in my bedroom with my laptop, writing, I realized my phone battery was way low, so I plugged it in. Shortly after that the doorbell rang and a friend of ours, who was spending the night arrived. I ran down to answer it and walked out to the patio with him to where Rick was. I sat with them for about an hour and went upstairs to go to sleep. I checked my phone and the little icon showed the number 10. That means 5 calls, 5 messages. All, I could think was that something horrible had happened. I listened to the oldest first and worked my way to the newest. Four of the five calls were from my mom. Each one angrier than the last. It turns out that not only did TMC not know she was on chemotherapy, none of her doctors, the neurosurgeon (or neuro-nazi as many refer to him), nor her neuro-oncologist noticed that the Temodar was not on the medication list. I remember mom and I talking about the drug to the nurse at check-in. Mom was totally pissed at me for not answering my phone. It felt like  all the time I had spent with her and everything I had done, meant nothing. I let her down, by not answering my phone for 36 damn minutes.

I called the nurse before I called mom, because frankly I was scared to talk to her. I wanted to hear the bottom line. She explained what happened, and when I asked her about mom going home tomorrow, she said she didn’t see that happening with everything that was going on, and that she was not stable enough to leave the hospital as far as she could tell. It feels like I have used those exact words before…..It turns out Patricia let Bob in and gave him the drugs and he ran them over. The nurse put me through to mom who explained that she got her drugs and then proceeded to tell me how upset she was with me for not answering the phone. Like I didn’t hear it the previous four times on voicemail. Ouch.

So now we wait. And hope.

They found blood clots in both lungs, so they decided to keep mom in another night at the very least. Shit shit shit! I actually cleaned that up for the faint of heart. We are awaiting the results of the ct scan of the brain. It has been decided that she will be moved to the intensive observation unit so that if she has any problems she will have a quicker response. The new room number is 851.

Needless to say she did not make it to Sushi Garden today. But yes, I brought her the shrimp and spicy cocktail sauce and a boiled egg (no idea why she needed an egg with the shrimp, but whatever). The nurse begged me to this so that she would quit talking about it already. More later-

I’m using dates exclusively for the post titles now for two reasons. To keep track of what the damn date IS, and because the fun of coming up with a creative title went out the window….

I got 8 hours of uninterrupted sleep last night and it was glorious. I don’t feel any more rested though. Maybe after a second night I will….. Hard to believe that’s a possibility! Okay, I probably shouldn’t admit this, but I tried one of mom’s sleeping pills. Purely for scientific purposes. Yeah, right! I didn’t trust myself to turn my mind off and actually sleep. Honestly as I was drifting off, all I could think of was, wow, I hate the way this pill makes me feel. It made my whole body feel numb, but not in a good way. I swear I will never do that again!

As I sit here on my beautiful patio drinking coffee and looking out at the desert and my swimming pool, I realize how much I don’t ever want to live in the city again. It’s hotter down there. You don’t get the breezes you get up here. Or the peace and quiet…. I always thought when we get old and all the freaking stairs in our house get to be too much, we’d just move in to mom’s house. That’s definitely not gonna happen! Just cooking in her kitchen is tough-not enough counter space-too closed off! I am suddenly appreciating everything and everyone in my life. God, that sounds sappy-I almost hate to even write it. I usually roll my eyes when I hear someone say that kind of thing….but maybe it was just time for me to get it.

I got to mom’s after stopping at Avella to pick up the rest of the chemo drugs. She was visiting with her former neighbor and friend, Steve. We talked about what Iris had to say last night and she, too, was relieved. After Steve left we got her ready for her big day. As I was getting her ready, I told her that her feet and legs looked puffy. It was the first time I noticed it. Anyway she had a 10:00a.m. occupational therapy appointment, followed by lunch, radiation and a Dr Schroeder appointment. He said she still couldn’t wash her hair. Oh well…. the radiation tech also noticed her puffiness and got her right in to the nurse practitioner to check it out. The worry is a blood clot, or dvt. So after the 2:30 spot with Schroeder we had a 2:50 ultrasound appointment across town. Unless we are beamed, that’s unlikely. But off we went. It took almost two hours for the whole ultrasound, which drove mom crazy, but we had to wait until the results were transmitted to CNS, and then they let us go.

Cool. We went home and I told mom to get in bed for her nap while I started dinner. She’s been excited all day about the bratwurst, sauerkraut and mashed potato dinner I had planned for her. Hell, she deserved it. Last night was cashew tofu and edamame fried rice. Not her favorite. But, hey you can’t eat that unhealthy stuff every day. While she was napping, I got a call from Dr. Sanan from CNS. They found a blood clot in her calf. He would do a direct admit, which means he sets everything up, TMC calls with a room number, we walk in and hit the call button. Bam, she’s in. And that’s how it worked. Seamlessly. But, she is in the hospital. Again. However, she is supposed to just be there overnight. Which we hope really happens, She immediately told the nurse to get started with whatever they need to do, because she was planning on being at Sushi Garden to meet her friends at noon tomorrow. She has a craving for shrimp. I’ll let you know how that goes.

The sleeping pills added an interesting twist…..She had one a little before 11 and slept soundly until a little after 2, at which time she rang the bell (thank god!). She said it was the best sleep ever and she felt great but needed to go to the restroom. Only her body was a 143 lb gumby. It did not want to cooperate at all. She tried and tried to prop herself up and get out of bed and we both started laughing so hard that it took even longer…It took us forever to get her there. When she realized it was still the middle of the night she said she wanted the second one that the doctor okayed. After taking it, she started to lie back down and then threw up. Well that was fun….She told me she thought she threw it up, but I said are you sure? What if you didn’t? I don’t want to OD you on this first night out. Seriously, bad idea. Just go back to bed. Which she did until 5:15. Another brief night, but a little better so I’m not complaining. Every night I get another half hour or so. It could be worse.

She really didn’t seem okay today. Weak, tired, other issues that no one, not even me, wants to hear about. But despite all that, we had some good conversations and nice moments, and we both felt a little better. Her mood swings are disconcerting. One moment happy and in the moment and the next sad, and living in the worst parts of the past. I feel her pain.

Her friend Gina came and spent a couple of hours with her and I ran to Target to pick up a few necessities and non-necessities. It’s Target, for god’s sake, you have to do both! Anyway, Gina also saw the changes in mom, and it made her as sad and upset as it made me. I cleaned out mom’s freezer, because, well, I’m German, and that’s the kind of crap we do when faced with adversity. I wiped down her washer and dryer because, um, see above. I made a vegetarian Chinese dinner and mom’s friend Bob joined us and then the new and exciting happened.

Connie came to spend the first night with mom. A break. Overnight! I got to spend the night in my own bed! Woohoo! There are few people I would trust more than Connie to take care of mom. She is experienced in this sort of thing and she worked for us at Dental Design for SO many years. She is probably the most loyal and trusted employee ever. And she is staying with mom!!! But, (you knew there would be a but), as I drove away, my elation at the freedom for the night was intermingled with pure guilt. Damn that emotion. As I sit here writing, I am wondering, is she okay? Will she try to get out of her bed on her own? Will she call my name or ring the bell and wonder who the hell is helping her and where the hell I am? I am having to physically refrain myself from calling or texting Connie to check up on things, because I am supposed to be catching up on my sleep once and for all.

On my drive home, I called my friend and favorite oncology nurse, Iris, and asked her about what was going on with mom. She assured me that between radiation and chemo, this is all to be expected and will indeed improve. Whew! As I told Rick about the call, he convinced me to call Gina to reassure her. I’m so glad I did. I think she needed to hear it as much as I did. And now, hopefully, some uninterrupted sleep…….

I’m a planner. An organizer. I guess that’s the biggest part of all this that is so tough to handle. How do you plan this kind of shit? Or organize it? There are so many wild cards. This biggest wild card is mom herself. Is she purposely not listening and doing the opposite of what is being asked of her? Or can she not remember it? She says more and more things that sound like Mickey, which is terrifying. What’s wrong with me? What’s happening? And more like that…..

The sleeping pills of course, were not ready yesterday. So we kept her up as late as possible. We talked about using the bell, or just calling out my name when she needs help during the night. She did not do either, on any of the three occasions in which she got up. The first time she got up, she fell. I heard it and found her on the floor of her bedroom trying to get to the rest room. She got up from the foot of her bed instead of where the walker is next to her bed. Imagine me at 1:15 a.m. trying to pick up an uncooperative person who can’t control one side of her body. So after the fall we talked about what would happen if she fell and hit her head or broke a hip. It would be straight to an assisted care facility. One would think that would be enough to make her not do it again, yet she did. Twice. WTF am I supposed to do with this?

In the morning, mom’s next door neighbor, Patricia, came over to help her shower and wash her hair. Between that and helping figure out the meds, she has been a great help! It had to feel amazing after 4 weeks of not washing her hair! After that another neighbor, Jolene, brought her some flowers and a beautiful new top. Her friend, Helga brought her lunch today and stayed for four hours, which allowed me to go home for a few hours and run some errands. I have not been home since Thursday morning and miss it more than you can imagine. Thank god for the break! Rick and Idgie came and spent the first two nights with me and Tyler came over after work to hang out with us…..I don’t know that I could have hung in there on such little sleep without those two (or three). I finally got her sleeping pills in the evening and am keeping my fingers crossed for a good night’s sleep-for both of our sakes.

Mom went to bed a little after 9 last night. Around 11:15 I heard her talking about flooding on the Amazon river over the monitor. When I went in to see what was going on, she told me about what a great sleep she’d had. I pointed out that only two hours had passed. She wasn’t done yet. I helped her to the restroom and back to bed. I then tossed and turned for a couple of hours worrying about whether I would wake up if she called or rang. At 2:40 I woke up to the sound of the ringing bell. Well, that’s cleared up-yes I will wake up. Good to know. Mom decided that she would like me to find her a warm robe so she could sit in a chair and read. She asked me if I had a good night’s sleep. Uh-no. What I had was a nap. Thanks for asking. I suggested that it really wasn’t a good idea to sit up and read in the middle of the night, that sleeping would be better for everyone concerned. No, she decided, the chair was where she would go. I asked what would happen if she wanted to go back to bed. No problem, I’ve got the bell. Lovely.

Of course, after that interruption I was up tossing and turning until nearly 5. Then another little nap until Rick woke me to ask if I heard something. Nope. I was asleep. If it wasn’t a bell or a loud thump, I’m not getting up again. Period. So, in short, I got a whopping 3 1/2 hours of sleep. When I got up she was sitting at the kitchen table and I finally told her I can’t make her do what she knows she is supposed to do. If she falls and gets hurt, it’s because she is doing something she should not. I can’t watch her 24 hours a day. Once we got to the radiation appointment, she fell asleep in her wheelchair. I wanted to cry. I sent her PCP a text asking about a prescription for a sleeping pill for her, at the suggestion of the radiation tech.

It doesn’t take a rocket scientist to figure out that nothing about this situation will work out if the first night is any indication. And I’m back to wondering what the future is going to be like. So far pretty bleak, I’d say.

D-day. This is it. I had to be there by 9:30 to start packing things up and getting mom ready to leave at the appointed time of 11:00 a.m. I needed one last training in helping her shower. I packed my bag last night since I will be there the next three nights and four days before a break where I can leave for any length of time. I am nauseous.

At 3:54 a.m. I got a phone call from HealthSouth. Mom had fallen trying to get up and use the restroom. She wasn’t hurt, but the nurse wanted to give me a heads up that she gets confused during the night and forgets that she can’t just  move around at will. Great. So then, of course, I was up worrying about mom falling during the night.

She was discharged at noon, following a few physical and occupational therapy evaluations. We went to her house and picked up her walker and took all of her belongings there. We then headed to radiation and lunch at PF Changs with Rick and Tyler and then back to the house for an appointment with the in-home nurse that will come once or twice a week. Mom still isn’t listening too well about not getting up and moving on her own, but all we can do is keep telling her and hope for the best. We can’t be attached at the hip 24/7. We set up the monitors, gave her a bell and the phone and have to hope that she will do what she needs to do to summon me for help during the night. I hope this works. It is heartbreaking.