How are you? I am fine. Camp is fun. I miss you.
- Cranioplasty in January to remove a brain tumor called a meningioma from behind my left eye.
- CSF leak and emergency craniotomy in March to replace my titanium mesh, add belly fat to the sinuses above my eyebrows and reposition a bone to stop the leak.
- A Staph infection from one of the surgeries or the CSF leak causing me to have a strong antibiotic home “IV” through a PICC line.
It has been over three months since I last posted and I am sorry for the delay. I guess that’s another accurate view of life after craniotomies. Life has thrown so many more challenges so much so that if I was reading it, I wouldn’t believe it. But I brought you all in to my life and then left you in the dark and I am sorry.
I had to look back to see the last thing I posted. I talked about getting a PICC line but didn’t describe it. It was a tube going straight into my arm halfway between my elbow and my armpit. I say straight into because when they changed the dressing each week I could see this little plastic tube coming up through my skin. It was bizarre.
They gave me a box of little plastic balls with tips on them each week. They were refrigerated and an hour before I would hook up, I took them out of the fridge. You hooked up by alcohol swab, unlock the tube, saline flush, lock the ball into the tube, let the ball empty, flush with saline, then heparine and then lock the tube.
They started me with Vancomycin. I was on this for 2 to 3 weeks before my glands around my chin and ear became swollen. One doctor told me I had blocked spit glands and told me to get sour candies and lemons. Then the rash came a few days later. I was covered from my waist to my chin in hot, itchy bumps. They immediately took me off the vancomycin and switched me to two other medicines in my PICC line. It took at least 5 days for the rash to start going away. With that, my “blocked spit glands,” went away since they were only part of the allergic reaction. While I was waiting for it to go away, I tried aveeno body wash, aveeno lotion, Benadryl cream, and finally caldacene (sp?) powder. It ended up being the powder that helped most. It wasn’t until all of the vancomycin left my system that the rash went away completely. It took about 2 weeks.
A month after my second surgery, the “leave specialist” called because she needed to know when I planned to come back to work. I told her that I needed to discuss it with my doctor. My doctor said if I felt up to it, he would release me to go back in two weeks. I made the mistake of thinking I was up for it.
My skull based surgeon had just told me I was going to have another surgery in July. It’s not really a discussion, just “here’s your schedule” and I’m okay with that. I know I could depend on COBRA for 18 months, but I do not want to lose my job. I took that phone call as a suggestion that I come back soon or else, so I went back.
I started out half days for a few weeks, then 6 hours and then 8 hours. I think I have only worked about 3 actual 8 hour days. I had my doctor write an excuse for a week once because of sheer exhaustion. You can tell when I am exhausted, too, because I stutter and slur my words. My brain slows down but I literally jump at every sound or touch.
In early May, my husband and I found the most beautiful apartment. It was affordable for the area and it took cats. We grabbed it as fast as we could and everyone besides me moved everything in. My mother spent days going through boxes that had been in storage for the 3 years we lived with friends. She steam cleaned the sofa - if you put furniture in storage, put dust cloths over them. She washed all of the dishes and arranged my entire kitchen. I didn’t ask her to do this, but I think she really enjoyed it. We finally moved in around the 2nd week of May.
I would wake up every morning and sit on the sofa and stare out of the large picture window at the lake. On weekends we would have jet skiers and boaters buzz by. I always prayed that someone would eat it outside our window but no one ever did. There were many people our age in the complex and we would often sit outside at night with them. It was an eclectic, amazingly interesting group of people. The apartment was a block away from our town square and many people worked at restaurants on the square. One of them was a line cook at a German restaurant on the corner of the square nearest us. We really liked him, but then he was given an eviction notice. We didn’t understand until a few nights later when we started hearing him outside yelling at night. He spent 3 days drunk, sleeping, waking up drunk and immediately starting drinking for breakfast.
On June 3rd I woke up to go to work. I grabbed a frappacino (I know) and sat on the sofa. I looked out the window and our three tier retaining walls had crumbled. I yelled for my husband. He came out and looked. We stood there in shock.
My husband ran to the neighbor next to us and knocked on his door and the two of them then went door to door knocking. I called our landlord and left a voicemail. He was there within 15 minutes. Some of the air conditioners were hanging by a cord, so landlord Wade, my husband and our neighbor tried to build something to shore them up.
I stayed inside and packed a couple bags. I got a week’s worth of clothes for us, medicine and toiletries. I brought water out to the guys and Wade thought we should be able to stay, so I stopped packing. I visited with a couple neighbors and laughed at the absurdity of it all. The neighbor at the end of the building that calls to complain about everything walked by with a bag and yelled at us because she couldn’t believe we were laughing while she was going to be homeless. It’s a coping mechanism, bitch.
I went back to my apartment and in that time a man who lives a few homes down came over and called the police. We all refer to him now as, “that fat fucker.” I took a few more pictures.
Then the knock on the door came. The police told us the building was moving (it wasn’t) and we needed to get out. My husband came in and crated the cats. I grabbed one of our bags and my husband said it was too heavy for me so I just went outside and sat. I watched the police go to other apartments. They went to Christy’s home on the end. She wasn’t answering. They kept knocking. They spoke to her through the window. She wasn’t coming out. We all tried to come coax her out. I spoke with a couple officers who were about to just go in. I told them she was elderly and on a LOT of medicine. She was confused, but if she “fights” she’s not combative. They finally persuaded her to come out.
They cordoned off our side of the complex. There was another strip of apartments near the road. One kind neighbor put all the animals in there. She then told two neighbors they could stay there until they found somewhere. Another neighbor let someone else stay with them. We all added each other on Facebook and my husband and I left.
We went to the furnished apartment on the other side of the lake that my parents had for a few more weeks even though they had gone back to Mississippi. We heard helicopters go by so we turned on the news and watched live footage of our apartments. The dirt had slipped a little more, but the building was still there exactly where it had been. The newscasters would break in and talk about how it was “teetering on the edge of slipping in to the lake,” which angered me to no end. It was a lie. There was one corner where the dirt had eroded a bit from under the foundation, but we had seen that.
The noon news had an interview with a neighbor that we had woken up who talked about how he felt a rumble and saw the windows warp. Um, we woke you, you fucking liar. A neighbor from another house said she was outside and she heard a whoosh around 5:00. It happened at 6:15, I live inside and there was no whoosh. She would go on to be interviewed on a few other stations.
On Sunday a few days later we went to the Red Cross. Our neighbors had encouraged us to go. Since we had been there only a month we didn’t have any proof we lived there. Our lease was in the apartment and we hadn’t received any bills yet. I suddenly remembered that CVS had called about a prescription. By luck I had changed my address with them. I picked up the prescription filled the day before the landslide and the Red Cross used that as proof that we lived there. They gave us a card with $250 on it ($125 for each of us). I was very happy because this would help with replacing groceries and the toiletries I didn’t grab. We also learned from the Red Cross that our evicted neighbor had come in for assistance. We didn’t say anything.
Early afternoon a neighbor called and said the police were letting us in one family at a time to get things. We called my in laws and they were there 30 minutes later with a truck and trailer. They live 30 minutes away, so they must have just hopped right in the truck.
Moving day was both a clusterfuck and a beautiful sight. Neighbors went as a group and all of them went into an apartment to pack up fast and help people get out. My husband and I had just talked that morning about what we would take if we had more time. That’s what we did. We left the kitchen except for 3 bowls I love. We left the furniture except for the bed and new $1200 mattresses. We left the towels and most linens. We left the books. We left the coats. People packed up more than I intended to take. We have all of our tiny knick knacks. We have the boxes I hadn’t unpacked yet because the stuff in there didn’t matter to me.
After our apartment was done, my husband helped with a few other apartments. In the meantime I sat and visited with some of the elderly neighbors. I got up and smoked (yeah, I started back) and dodged the horde of little kids that one of the neighbor’s daughters had brought.
At one point I was standing near the road. I had seen cars drive by gawking and a few brave assholes walk up to see what we were doing. There was a news van from Univision with the reporter setting up her camera over to the side. I had been dodging cameras and reporters this whole time and she was pointing away from me.
Then I saw a Cadillac. He was driving less than 5 miles an hour staring at us. There was a uhaul behind him trying to get into the parking spaces so my neighbor could load it up. This man in the Cadillac was blocking the uhaul from getting in, so I said, “keep going.” He told me it was a public road. I pointed to the uhaul, told him he was blocking him and said, “keep going.”
He again said it was a public road. I said, “Move along,” this time a little more sternly.. He told me it was a public road and he had the right to be there. Without thinking I yelled, “GET THE FUCK OUT OF HERE! We are trying to get our things and you are enjoying the show.” He moved on.
I turned and noticed the Univision camera was focused straight on me. I didn’t care at that point. I just walked back to the space between the apartments and my neighbors told me they all felt that way. It was very cathartic to get that out. After that moment, so much of my anger and frustration has gone away.
I checked the DFW Univision website and never saw a clip of that. I don’t know if she got it on film or not. Either way, I’m glad that side of me wasn’t shown. You can google, “Granbury Doyle St Apartment” and see news stories and footage of the apartments. It’s pretty insane seeing the back of the apartments from the air.
For now we have extended our lease at the furnished apartment. Our furniture is still at our old apartment. Wade said we can leave it there and come and go as we need. His insurance doesn’t cover land movement so he is trying to raise money and is considering suing the insurance company. The damage came from water runoff that swept the dirt out from under the foundation. He has gotten a plan from a structural engineer and will be submitting it to the city. He fully intends to repair and rebuild the retaining walls. We are hoping they can do it in a way that it is pronounced stable first so we can move back in while they work on the retaining walls.
I start IMRT radiation this coming Tuesday. I’ll talk about that later because I am all worded out for now.
Thank you for your questions of concern. I am sorry that I left some of you worried. Emotionally, at this point I am okay. Each new thing that happens makes all of it easier. I don’t know if I am numb or if I am at a place of acceptance.