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?

I went to bed at 9 last night and woke up at 6-a respectable nights sleep! And, although I am not a fan of being up at 6 a.m., I decided to get up and run to Starbucks to get mom a caramel macchiato before her first physical therapy. She did not have a great night and I would say she is in the 4th stage of grief, which is the bottoming out stage, so to speak. It is not a great place, but on the bright side, we should expect an upswing after this stage and I will try my best to usher her in that direction as quickly as possible. But, on the other hand, she needs to feel this to be able to get to the next stage…..

This sucks.

Mom so hates anything that points out what she can’t do. Like the fine motor skills in her left hand. She is terribly opposed to bingo, just ask any poor soul who was present when she had to do it in group. She has taken up cursing like a sailor. We had a long talk about it this afternoon and she sounded better by evening. She has a lot of spare time this weekend with a light schedule, so it you are thinking of visiting it’s a great time to do it. Her roommate went home today so she has the space to herself. Her phone number is now 322-7874.

At shortly before 7 a.m. this morning, I received a phone call from Cathy Dunaj (not sure of her married name). Cathy is a doctor in Jacksonville, Florida. Our moms are old friends. She gave me some things to think about and offered to check out the CT scans and MRIs. With something like this you can’t have too much information-at least I can’t.

I talked to my mom early this morning-she was getting ready for her big day of therapy and she had ordered her lunch and dinner to be served in the dining room. Big step! I told her I would come and keep her company, so I went to the dining room with her. I know I am the only one saying this, but I really think she is unusually tired and different, the way she talks, the way she eats….. But then I was also the first one to notice she wasn’t quite right when she got home from Europe, and that she was deteriorating when she got home after surgery. I just don’t know what it is, if it’s normal, if it’s part of recovering from brain surgery or if there’s something else going on.

We decided to catch a matinee this afternoon-Trainwreck-I felt like I desperately needed something to laugh about! Sources tell me this is the one to see. It was everything I had hoped for-it made you laugh, it made you cry, I could have done without the parent dying though….

I received a phone call today saying that radiation was starting on Monday the 3rd after all. I’m surprised since I was told HealthSouth would not take radiation patients, but I will not argue. If they can start on our previous schedule, hallelujah! I prefer it to waiting another week if we don’t have to. At this point they have a tentative release date of August 10th, but will continue to evaluate her progress and make adjustments as needed.

Her schedule tomorrow starts with a 9 a.m. Physical therapy, followed by more physical therapy with her last appt. at 3.

I didn’t write anything yesterday, but I wish I had. I woke up at 1:50 a.m. and never could get back to sleep although I was very tired. At 4:45 I gave up and called it a night. It occurs to me that writing about what’s going on is very cathartic and helps me to deal with everything….It seems like when I write on this blog, I can somehow put all the things going on in my head to rest.

Yesterday was a kind of tough day getting acclimated to the new surroundings and schedules. I was frankly alarmed that I did not see mom use her walker even once. She was using a wheelchair. This is not even close to what I expected, and I really began to question where she was headed. There was a new patient orientation that she said I needed to be there for, but I was actually the only non-patient there. I think she wanted moral support, and I am glad I did go, even though I wanted to scream several times during it. Mom interrupted the speaker constantly and then announced she was tired and wanted to go rest and get ready for visitors. I had to point out that the information being provided was very useful, and she needed to stay for the rest of the presentation. After I wheeled her back to her room she started talking about random things from her childhood that were very upsetting to her. She lived through World War 2 in Germany, which was not an ideal setting for your childhood. She was 5 years old when the war began and 11 when the war was over. She just isn’t quite herself right now and it makes me miss her already, which I know sounds morbid and I realize that she may be back to normal at some point in the future, but for now it’s just hard to witness. She does seem to brighten when visitors come, which gives me hope. A little.

Yesterday, Fernando finished getting the house ready for her return. The carpets have all been removed and the ramp is built. The hardwood floors that have been covered for decades are now again visible, and they look great! The next thing we should do is to replace the kitchen floor, but I will wait until she is feeling better so she can pick out the tile herself. As much as I’d like to have it done now, I think she might actually enjoy a little redecorating. Right now there’s an awkward transition between the floor in the kitchen and the hallway and the kitchen and the dining room, but, oh well.

Here is what you need to know for today: if you want to call mom in the hospital, her direct number is 322-7873. She has physical therapy at 8:15, 10:30, and 1 and at 2 she has speech therapy. So, if you are planning a visit today, I would suggest either at lunch time between 11:30 and 1 or wait until after 3:30. My guess is she will be pretty wiped out today, and may try to nap between her appointments. Visiting hours end at 8. She has her iPad with her and I think she is learning more about it every day. I think we can teach her how to use FaceTime today and hopefully she can more easily communicate with friends and family back in Germany. Wifi at HealthSouth is much better than at TMC, and Tyler put Netflix on her iPad so she can watch her beloved Brit-coms. I’m sure her roommate will want our heads for that.

I am encouraging mom to at the very least take her dinner in the dining room. She reluctantly said she would, but doesn’t seem happy about it. I hate the idea of her eating all of her meals in bed. It seems so wrong. Her roommate is being discharged tomorrow, so hopefully we can move her to the bed by the window. I think that will help some.

And today, Chemotherapy begins!

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.