Here goes! Another big day-mom’s last full day at HealthSouth. It started with family training day at 8:15. Four back to back therapy sessions: occupational, speech, physical and an extra occupational  and getting in and out of the car safely training. Then on to radiation! Nothing but fun over here.

Occupational therapy was a revelation. Mom does not follow basic instructions nor does she listen if she doesn’t want to do what is asked or cannot for some reason, process it. Uh-oh. It’s starting to hit me that there is a lot more going on here than I had anticipated.

Speech therapy further proved that point. First, when given a worksheet, she started in the middle, and jumped around wherever she wanted trying to skip anything too challenging. It was difficult to watch. Her mind is simply not working the way it once did. Temporary or permanent? It’s anybody’s guess. The second occupational therapy didn’t go much better, nor did physical therapy.

On my last afternoon of freedom, Rick and I went to the casino, because it just seemed like something different. Something I won’t be able to do for a while. Then we came home and had a nice quiet dinner, just the two of us, because that is unlikely to happen for quite some time either. I feel bad because mom is so looking forward to going home and that is the end of my life as I know it. I will miss it. A lot. I already have the last month…this will just kick it up a notch.

I also found out today that the second lady I had hoped to have help out at home is no longer available. I have one kind soul to take mom four nights a week. That leaves me with 3 nights, and 7 days per week until I can find someone else. If anyone knows of someone reliable please let me know, because this schedule cannot work for long. While an hour here and there might be helpful, something scheduled and consistent is what we need. Desperately.

After writing my post this morning, I got a phone call from mom’s old friend Helga Hassey. I think we talked for about a half hour. I love that woman. At the end of the call, she said, can I call you just to talk sometimes? Yes you can! Rick went off to one of his four days of work per month and left me alone in the house for a few hours. Heaven! And probably the last time I will have that for a very long time……..

We saw Dr. Miller, mom’s inpatient physician, before heading to CNS. She asked about the plan once home and how we would handle her care. I mentioned that we would hire overnight caregivers and I would do it during the day as long as she needed it. She pointed out that she would need 24/7 care indefinitely. Yikes.

I called one of the services that provides in-home care, and honestly, it is staggering. If we can do the private route, it would obviously be more affordable. Assisted living is a bargain compared to in-home care. I think we will try to do this for the first few months and see how it goes. If it does look like a permanent 24/7 situation, we will have to seriously think about how this will work long term. We may have to go in a completely different direction. In the long run it may be cheaper to put a guest house in at our house than to have care-givers help out overnight for years, and it has been pointed out, I should have at least a one day break. Mom is unhappy about losing her independence and I’m not thrilled about losing mine either. Hanging in there, but barely, and it hasn’t even really begun. It is daunting. 

Mom’s first appointment yesterday was with Dr. Schroeder, of arrogant fame…..He first told her that she could still not wash her hair or get her incision wet which did not go over well. Between the steroids she gets for the swelling in the brain and the radiation, apparently the incision will not heal as quickly as it would otherwise. She then asked him when she could drive again, to which he replied, “Oh, you are not going to drive again.” “Ever?” she asked. “No” he replied. I thought she was going to totally lose it at that. She looked so sad, so defeated. He explained to her why that is. Things change in the brain, after trauma, including surgery and radiation. Thought processes are different, you may not react the same way to data your brain is processing, which makes driving dangerous to yourself and those sharing the road with you. She totally understood, but what she basically heard is, your independence just left the building. He also showed us the MRI they did last Monday. He showed us the outline of the tumor he gutted. It was impressive. He also discussed the growth of the inoperable tumor. I asked, (stupidly, apparently) “was it significant growth?” “if it shows up, it’s significant.” Thanks for clearing that up asshole.

Her second appointment was her radiation appointment, and she announced “I got some bad news today.” Her radiation techs, Tiffany and Jeff, dealing with cancer patients all day, every day, were horrified. When she explained she couldn’t drive again, they both breathed a sigh of relief. They told her she could be like Jessica Tandy in Driving Miss Daisy, I said wait, that makes me Morgan Freeman….

Her third appointment was with Dr. Badruddojah, (I still feel like I spell his name differently every time). When she talked to Dr. B about the driving thing, he told her it was way too soon to make that kind of determination. We should wait until two weeks after the radiation and chemo treatments are over and see where we are. Rick thinks that they play good cop bad cop on purpose. I don’t really care, but the bottom line is that Dr. B gives her hope, and that’s okay by me.

We talked at length about the possibility of not driving, and what that will mean. I told her I am happy to drive her where she wants to go, and when (if?) she gets to the place where she is living alone, if she wants to go someplace there is always a taxi or uber. I love uber. It just means no more car insurance, car maintenance, looking for a parking place. Lots of people live happy lives without driving. Later on Rick and I discussed it further, and decided the best thing for her will be to make this next part of her life as similar to the pre-cancer phase as possible. I will take her to the base for water aerobics on Monday, Wednesday and Friday. I will take her to her art class on Thursdays. We can do this.

I went to her house to wash the floors after I left HealthSouth, and to try to get her pain-in-the-butt cat, Brandy to come back in. I was there for over 2 hours. The cats are officially in the house with no outside privileges, until mom gets home on Thursday. Enough already! Upon returning to HealthSouth, (and hand delivering the evening cocktail)  I met with her case manager and we scheduled a family training day for tomorrow. I will go through all of her therapies with her, they will teach me what to do and will show me how to safely get her into and out of my car.

I apologize for not writing yesterday, but aside from being super busy, my internet was not working and I did not have the time to do anything about it. I got it going again this morning and we are back online. Halleluljah!

It’s crunch time!

Crafts day!

Pickle and chile snow cone!

i had no idea just how much I needed this quick trip to Texas. Spending some time with the soon-to-be newlyweds, doing pinteresty wedding crafts, eating and sleeping like a normal person for a few days totally recharged me. I went a few days without crying-except of course when I watched Jenna and Rick practice the father-daughter dance-the good kind of crying. It gave me a little distance and the ability to think about something else for more than a few minutes at a time. I can now move forward after taking a huge cleansing breath!

This is going to be a big week! And I say bring it on! I’m ready!

It sounds like mom had a great weekend too, lots of visitors, including Amy Koster and her kids who came all the way from California to visit her! Thank you to everyone who helped in my brief absence!

We made the trip yesterday in under 12 hours, leaving at 4:20 a.m. Everything back on the home front seems to be going well. I’ve spoken to mom a few times. The discharge date has now been set for next Thursday morning, the 13th. Glad that’s not a Friday!

We had a nice evening with Jenna and Tyler, with Jenna preparing a great dinner and wonderful appetizers. Jenna got up early and went to work, while the rest of us slept in some. Tyler Krager, Rick and I went out for breakfast at the Dixie Pig (one of our favorite breakfast spots here), and then Rick got fitted for his tux. And this afternoon is crafting time!

Tonight will be a steak dinner at the Beehive! Super excited about that. Then the father daughter dance practicing. More pinteresty wedding crafts tomorrow and then heading back to Tucson bright and early on Sunday morning. There’s so much to do to get ready for everything!

The day went well. Mom is looking great, eating well and pretty darned happy. I met her at lunch, following 3 rigorous therapies. She thought I had left already and was very surprised to see me. She thought today was herring day (Gina), but alas it was more Mexican food. So, basically my leaving for a few days, while causing a bit of guilt for me, is not phasing her in the least. Mom is all on board for this blitz trip to Texas and back. All she cares about is that we drive carefully, stay safe and have fun. Thank you to the good folks, stepping in and helping out over the next 96 hours.

Mom went in for radiation today, and I could hear her joking with the techs. Telling them what great music they played during the treatment and how pretty the green light is. One of her fellow patients looked at me and said, “She’s pretty amazing.” Yes she is.

Her hand delivered gin and tonic made her very happy once again. If someone wants to bring her that or a Heineken in my absence, go for it. She is allowed 4 oz. per her surgeon. I have decided that once I drive out of my driveway, I will leave any lingering guilt there. I know when I get back, we are getting down to the real work, and I look forward to a small reprieve from the many emotions of the last few weeks. A good friend put it like this, you’ve got to dance in the hurricane (and thank you Brandi Carlisle for the song-“You can dance in a Hurricane, as long as you’re standing in the eye.”) Ok. My new theme song.

I will be doing wedding related stuff for a few days rather than cancer related stuff, so don’t get worried if I don’t write a lot. That should just mean that all is well.

Yesterday was a blur. I got up and went through my daily checklist, making calls, setting up appointments and meetings, doing what I do best. Organizing. Mom raised a good organizer. Rick and I went to Molina’s and picked up her newest craving and she ate it ravenously. It’s amazing what a difference the steroids make. I spoke to her case manager, pharmacist, and lead nurse. We finally figured out what happened with the steroids. It appears that the discharging physician at TMC, Dr. Wiruth, only sent along a prescription for 8, yes, 8 steroid pills when she was transferred to HealthSouth. The admitting physician, did not see fit to question this or, god forbid, write a new prescription for more, or contact her neurosurgeon and discuss this. Nor did the pharmacy. Good job people, you should be proud. What happened to the “do no damage” part of the hippocratic oath?

Bygones……we rode over to the Center for Neurosciences (another thing I am sick of saying and typing) in the medical transport van. Sheesh, that was hot. By the time that thing cools off, you are just about there. Note to self-shower after, not before this ride. While mom is better and stronger with the re-addition of steroids, she is still one impatient little lady. Some things just never change. We met with her radiation oncologist, who casually mentioned that yesterdays MRI showed new growth in her inoperable tumor. Great. And what’s for dinner? This may be something you are used to saying, but I am still wrapping my head around cancer and mom being used in the same sentence.

Rick and I decided to run to Texas for a couple of days so that he and Jenna can practice the father/daughter dance a couple of times before the wedding. I do feel like I am abandoning mom, but if we don’t do it now while she is at HealthSouth, it just will not happen. There is no going anywhere other than an occasional restaurant, when lucky, once mom is home. And, while this insidious disease is all encompassing, my daughter still gets to have a fantastic wedding and parents who are in the moment and involved. Call me crazy.

We had a nice evening with close friends last night and are thankful beyond words for their help and support. It was exactly what we needed. While we are gone, mom’s friend Gina will accompany her to her radiation appointments, and that makes me feel a little bit better about not being here, plus, mom will love it.

They say knowledge is power. Honestly, at this point, knowledge is just plain depressing. When I read about glioblastoma, I question what the doctors are telling us about life expectancies. Everything I have read point to a prognosis far worse than what we have been told. On the one hand, it pisses me off. On the other hand, I wonder if what they are doing is to try to give us hope, and to offer us us something to reach for.

Mom is planning a super vacation for the family in the Spring. God willing, it will come to fruition! Never mind that both of the kids and Jenna’s future husband have jobs, and that the probability of their taking 20 days or so for a European vacation is a stretch. We are on board, even if the kids can only join us for a short part of it. Nothing economy about this plan! Just hearing her talk about it is fun. She is so excited to do this for us all and her excitement is contagious!

Today was the triple-header day at Neurosciences Center. Neurosurgeon, Neuro Oncologist, and radiation in one long four hour stretch. Only it turned in to 7. You can only imagine how much fun that was. First stop Dr. Schroeder-my favorite guy. I mentioned how concerned I was that instead of getting better in rehab, she seems to be getting worse. He checked her meds-not only has she been getting meds daily for only when she has high blood pressure (her blood pressure today was 82 over 47-they thought the gauge was broken) -which she didn’t have, she also has not gotten any steroids for swelling in the brain. Yeah, that’s why there has been no improvement whatsoever, and instead has been getting worse. Are you freaking kidding me? We will find out who dropped the ball, TMC in not getting the correct medication list or the people in the pharmacy at HealthSouth. I couldn’t even begin to guess. I think this could go either way. Schroeder went bat-shit. Ordered a contrast MRI to see what the hell was going on in there, scheduled 1 hour and 45 minutes after radiation…..which of course turned in to almost 5 o’clock. We finally got out of there a little after 5:30. Rick came and brought us some lunch and hand delivered the prescription to the HealthSouth pharmacy and Tyler spent most of his day off at the clinic. Thank god for these guys!

The good news from Dr. Schroeder was that mom can have a mini cocktail every evening. Mom’s happy about that part. I stopped at home on the way back to HealthSouth and made her a mini Tanqueray and tonic. Bob came right after I got there, we filled him in on our day,  and the pharmacist had the misfortune to come by. We all jumped all over her about what in god’s name is going on. Bob may be the calmest person on earth, but not today!

Tomorrow, and I would guess most days during radiation while at HealthSouth, will be Physical and Occupational therapy from 8:15 through noon, then leave for radiation a little after 1. Probably back between 2:30 and 3.

What a day.

As I was getting ready to go HealthSouth, my mom called in tears. She had a nightmare filled night. She said she was told she had a UTI and was getting Cipro. She doesn’t believe she has a UTI. I pointed out that she never had a headache either but she still had two brain tumors. We kind of have to trust these people…..

I was waiting for her in her room when she got out of PT. We sat and talked and she dozed off periodically. After a while several of her friends came to see her, so after a brief visit, I grabbed her laundry and ran home to do it real quick, get a start on tonight’s dinner and get it all back to her. When I went back she didn’t even remember that I had been there earlier. I encouraged her to eat her lunch, but she was pretty uninterested. Rick and Tyler brought Idgie for a visit and we took her out to the patio for a while. She was very happy to see that goofy little dog and it did seem to cheer her up some. After a short time she told us she was tired and wanted to nap.

Tomorrow is her first radiation and the day she gets her stitches removed. She will be gone from HealthSouth from about 10:15 to 2:30 or so, and my guess is she will be wiped out. I think she may be up for visits after 6 or so.

When I got to mom’s room Saturday she was sleeping. She just can’t seem to get enough sleep. When she did wake up she seemed so out of it and didn’t sound quite right. I met the occupational therapist who seemed like she had a good handle on mom and her personality, frustration, etc. I like her.

But, I hate this. When I’m not there, I feel guilty. When I am there, I feel sad. When people come to visit her, she is so happy to see them and she is so lucky to have them, but I just want to run out. I don’t seem to have it in me to go through the normal pleasantries. It’s like I’m stockpiling me reserves. When she gets out of here, it’s all on me. And I am terrified. Yes, I can and will do this, but it is so scary. I wish my late friend Valarie were alive. She would push and pull me in the right direction like she did when Rick had his surgery twenty some years ago. She was my rock. My no-nonsense nurse. On call and ready to help.

I found out yesterday afternoon that my mom was not given the correct chemotherapy dosage on Friday night. How in the hell does that even happen? And what does it mean? Will this ever go right?