Hi all –
After sitting here for about 15 minutes trying to think up a title….I decided to skip that part and start writing the stuff that really matters. I’m here now with Uncle Greg in his room at the Cancer Treatment Centers of America in Zion, Illinois. I got here last night and this was our first stop. I left here last night and I was extremely concerned about my Uncle Greg (being very honest). He was disoriented and very confused. He couldn’t manage to keep himself awake. When we asked him several times if he knew who I was….he couldn’t place me. As hard as I tried….I couldn’t hold back the tears. My Mom and I had a good cry….and a good sign was that it actually seemed to concern Uncle Greg. I got home and looked forward to seeing some progress today.
This morning….we walked into the room….and Uncle Greg proudly said “Hey guys”. He knew who we both were and when I told him he didn’t know me last night, he said “BULL”. He knows the year is 2012, he knows that he lives in Hartford, Connecticut, and he knows that the President of the United States is Barack Obama (that of course made me very happy)!! When we asked him how he was feeling today, he told us great. My mother and I were ecstatic. It seems like he’s doing better.
The Doctors have identified that he does have an infection….and they have him on antibiotics….which seem to be working. His calcium levels were extremely high….and they’re back to normal now. They seem to think that the disorientation could be from the infection. They’re hoping that over the next couple of days….once the infection is under control….he will start feeling much better. As of now….they’re thinking that he will still be able to have the radiation that was already planned for Tuesday.
The big thing is….he seems to have made major progress since yesterday. He’s looking good! He talked to Karen today and told her that he loves her. He got a roommate this morning….and the nurse said to his roommate….”we’re going to get you started on lots of fluids.” Uncle Greg promptly said, “who the hell are they putting on lots of fluid?” To me….that’s a good sign. He’s aware of his surroundings. And when I asked him who he is to me….he sternly proclaimed “I’m your Uncle HAM!” Sounds to me like he’s got a lot of fight in him!!
Uncle Greg received a card from Bonnie to our house this week. My mom put it in front of him and asked him to read it. He got through the first couple of lines with no problems. My Mom read the rest to him….and he smiled really wide the whole time. So keep the notes and letters coming!! Just let us know….and we can send you our address. Mom and I will keep folks updated throughout this week.
With lots of love…..
So the links that were in the body of the text of my last blog post about construction on Tate’s room were giving everyone an error message when they tried to donate. Quelle horror! I wanted to let everyone know that the way to donate is to visit the blog website itself, https://gregtateupdates.wordpress.com/, and click the yellow “Donate” button in the top right sidebar. (this message is for the 100 or so of you who get updates by email- if you’re reading this on the blog page itself, just look right).
THANK YOU to those who have already donated, it really can’t be expressed in words how much this means to us to be able to do.
Cancer Treatment Center (CTCA) is a hospital experience like no other I’ve ever experienced, and as as a nurse for over 30 years, that’s saying something. I left Tate late yesterday and while it was unbelievably hard for me to leave him, I also knew that he was in good hands.
Tate arrived in Chicago last Thursday night. He is being put up at a hotel about 20 minutes from the hospital, about an hour north of Chicago. The hospital has an agreement with quite a number of hotels in the area so that patients pay $75 for 6 days in the hospital. That isn’t a typo. It really is $75. As Tate said, “blow my hair back”. The room is spacious, has a refrigerator, microwave and a king-sized bed. Tate was a happy camper.
Friday was a day where he saw a whole bunch of health care providers. Desi was with him and they both were impressed. One of the people he saw was a nurse who specializes in pain management. She didn’t think that the pain management that he had received at St. Francis was adequate. We’ve known that for awhile. The medication he was getting for the pain just wasn’t cutting it. Even though he is a self-described “pain wuss” it was clear that his pain was out of control. She wanted him to keep a diary of how much pain medication he was taking and it would be reviewed on Monday.
I arrived in Chicago on Saturday morning and we had a nice quiet weekend with Desi. Ashley was in town so we got to spend some time with her. He started using a cane when we were in Chicago because his gait was getting increasingly unstable. And he was sleeping way more than any of us were prepared for. But when he was awake, his spirits were good. He was annoyed when Desi and I kept trying to get him to eat. Who would’ve ever thought that we’d be concerned because the Big Man wasn’t eating enough? He and I returned to the hotel Sunday evening.
The first thing that struck me when we got to the hospital on Monday was the feel of the place, the attitude of everyone there. Patients, caregivers and employees all were going out of their way to make us feel part of this community of people fighting cancer. Everyone says hello as you walk through the halls. If you don’t know where you’re going, someone is willing to walk you to your destination. If you say you want to meet with someone, they figure out a way to make it happen ASAP. Everyone talks about CTCA as a family, and that is certainly the feel you get. Even the driver of the shuttle from the hotel went out of his way to make everyone feel included. You never got on board without Robert making sure that everyone had been introduced to all the other people on the shuttle.
On that first day we were going pretty non-stop. We met with the nutritionist who had some ideas of ways for him to get an increased number of calories and more protein into his diet with minimal intake, since he has no appetite. That meeting was followed by meeting with Janice, (the pain nurse). After talking about how much medicine he was taking, and what his level of pain was, we all agreed that his pain regimen needed to change. So she upped his pain medication and we were going to continue with his pain diary so that when she sees him next (tomorrow) she can figure out if she thinks it needs to be increased even more. I’m pretty sure that she’s going to increase it. Tate loves her. She is really taking his pain seriously and is actively working to control it. Hallelujah!
We left Janice and went to get an MRI of his brain. Tate is rather claustrophobic, so we had to travel a little ways in order to get to an open MRI. He wanted me to sit in the room with him, and for the first time in my experience the staff allowed it to happen. I’m not sure I’d want to do it again, but I’m really glad I could be there. I know it made the test easier for him.
When we got back to the hospital we got to see the radiation oncologist who had been able to look at the MRI. By this time Tate was getting around in a wheelchair. He just didn’t have the energy to be walking all over the place. The doctor respected his level of fatigue and decided to do his evaluation with Tate sitting in the chair rather than making him get up and sit on the examination table. Another example of how the needs of the patients are put first. He talked to us about how they would do the radiation and what the Tate could expect from the treatments. We both really liked him and the respect he showed Tate.
Not much happened on Tuesday. We had to wait until Wednesday to get an appointment for the radiation oncologist to “map” his brain. This is the process they use to figure out exactly where to focus the radiation at each treatment. While Tate was getting mapped, I asked to speak to the radiation oncologist. Tate wanted me to talk to him about some of my concerns. I was worried about the amount he was sleeping. He would pretty consistently nod off during a conversation. When Tate was truly awake he was himself but those instances were becoming less frequent. And on occasion, he would say something that wasn’t making a tremendous amount of sense. I wasn’t sure if he was really confused because of the cancer in his brain or if he was just coming in and out of a sleeping state. But I was worried. The doctor took my concerns seriously and talked to the medical oncologist. He came back within 15-20 minutes to say, let’s try and increase one of his medications. We can re-evaluate it in a few days. This was nothing like the experience we had in Hartford. We both felt that we were being heard.
I had to leave for the airport to come back to Connecticut shortly after this. Desi and I were worried because we weren’t comfortable leaving Tate alone, so Desi hired home health aides to stay with him when someone from the family wasn’t able to be there. So before I left the evening aide arrived. We both thought it was a good sign that her name was Desiree! She was attentive and caring making it much easier for me to leave him. I knew he was going to be in good hands.
Today he was meeting with the medical oncologist, the naturpathic doctor, the nutritionist and a gastroenterologist who Tate was seeing to try and figure out why swallowing was becoming increasingly uncomfortable. He was going to have the aide there as well as his niece Jeannette. And tomorrow Desi will be there for the first of 10 radiation treatments. He will get to spend the Memorial Day weekend with family in Chicago. When radiation is done, he’ll have 3 days of chemo and then we expect he’ll be able to come home. Right now the anticipated date for his Connecticut return is June 13 or 14th. Can’t wait for him to come home.
Being at CTCA has been wonderful. I am so grateful that this place exists. And more than ever I firmly believe Tate is going to get through this and come out the other side stronger then ever.
With love and gratitude,
Thank you for the outpouring of support after Julia’s last post. We continue to feel the love in so many ways here at our household. I’m writing about one very specific way we need your help right now to do something for Tate. This story starts with an email from our friend Dave Rozza, who just wanted to see if there was anything he could do to help. Well Julia thought, there is one thing.
Most of you know that Tate resides on our third floor at 15 Warrenton Ave. When we bought the house, we each chose our preferred room and Tate was clear that as an introvert living in an intentional community, he need some of his own space. His room is part of the attic, which we say is a “finished attic” but we’ve always had to put the “finished” in quotes for sure. The previous owners had done the work, but with some substandard materials and/or workmanship, in a way that has deteriorated in an alarming way. There is actually debris falling from between the boards in the ceiling. And just when we needed the space to be a good respite place for Tate to recover in. As Julia knew, Dave is a very handy guy. We asked him to come over and look at it.
Here are some pics:
Long story short, there is a lot of work on this room that needs to be done to make it a place fit for Tate to come home to, when he returns in a few weeks from the Cancer Treatment Centers of America in Chicago. Dave called in a contractor friend he’s done work with, and we got a quote from him. We can totally gut and re-sheetrock Tate’s room, and get it lookin’ good for his return, all for $6,000.
That’s where this blog post comes in. I’m asking for your donations to help us raise this money, which we need to do in a short amount of time to get the work done. We were so awed by your generosity when we first raised money in support of Tate’s medical bills, I admit it feels difficult to ask you a few months later for this project. But we know this will be a huge quality of life improvement for Tate.
When I sat down to write this post, the very first thing that popped into my head was George Harrison singing “I’ve got my mind set on you.” Specifically, the part that admits “It’s gonna take money, a whole lotta spending money!” That’s a fact. But don’t we all have our mind set on Tate? We know it’s going to take everything George said it will — money, patience and time — but from what I’ve seen I know there are people who want to provide some of each.
But it’s gonna take money
a whole lotta spending money
It’s gonna take plenty of money to do it right child.
It’s gonna take time
a whole lotta precious time
It’s gonna take patience and time to do it
To do it, to do it’
to do it, to do it right child.”
If you are reading this on the website, you just need to hit the yellow “Donate” button in the right sidebar to donate. If you are reading this in your email, just click here to be taken to the website, and click the yellow button on the top right hand side. For those of you who prefer checks, please send to 15 Warrenton Ave, Hartford CT 06105.
many, many thanks. with love.
The last time Tate wrote, he was struggling with the word metastasis. Believe me, we were all struggling with it. But he made the decision to transfer his care to the Cancer Treatment Center of America and we put our hope and focus on that. The plan was he would fly out in time for his fifth (out of six) Chemo treatment. CTCA would not alter same chemo regimen, since you have to go through the whole cycle, but they would get him going on ALL of the other services as well in the meantime.
There are five centers around the country. The one he chose was, of course, Chicago (it’s actually one hour outside of the city in Zion Illinois but I’ve heard that anyone within two hours of Chicago will tell you they live in Chicago). The plan was to leave on May 17th. He would be there for about a week and then return home until round six. CTCA pays for the all of his flights. Pretty amazing.
We decided we wouldn’t tell St. Francis he was leaving until right before that so that we could assure that they would be available to him if he needed them. Also, there had already been an MRI of his brain scheduled for May 14th. The doctor said a brain MRI was standard procedure once cancer had spread to the spine.
Then about two weeks ago, Tate started having headaches. They came out of the blue but hit hard immediately and then became a daily thing. They were like migraines in that they were light sensitive, noise sensitive and completely debilitating. We told the doctor and the nurses. The nurses said it could be reaction to the pain meds, allergies, constipation, caffeine. The doctor said, “Lets see what happens with the MRI.”
May 14th came, a full week after he began getting the headaches, and Tate went in for the MRI. Within a matter of hours the doctor called with the results. There are multiple small tumors on both lobes. “Each about 7 millimeters” he said. “We caught it early” he said.
The next morning when I came into Tate’s room to give him his tea, I asked him how he was doing. For the past three and a half months I have been asking him this question at least 2 or 3 times a day. But that morning the answer was different. He said, “It’s hard not to be a little depressed.”
Once there has been brain metastasis, the person has to stop chemo and do brain radiation for about two weeks. Then chemo can resume. We discussed whether or not he wanted to stay in Hartford to do the radiation but Tate was clear; he was done with St. Francis. CTCA said they could take over right away but it meant that he would have to be in Chicago for about 3 weeks as opposed to 1 week this first time. It was longer than he wanted to be away from home he said, but he was sure it was the right thing to do.
Tate flew out on Thursday (May 17th). Dezi took Friday off to go through his first day at CTCA with him. Karen flew out to join him on Thursday. She will stay for four or five days and then return home.
The house doesn’t feel the same without him of course and I personally am struggling with having even less control now that he is halfway across the country. He already reports the CTCA is “so far so great,” and that gives me more hope than I have had in months. But it’s hard not to be a little…I don’t know – terrified, angry, depressed, lost.
- I have been wanting to update the blog for sometime now, but I have come up against a block so I had to wait til I could work through it before I could update you all as to where I stand. So the block has been a word and the word is metastasis.
I hate the word as I hate hell, all Montagues and thee. The Bard creeps into the discourse!
But I really don’t like the word. It feels so clinical. Too clinical to accurately describe something that is going on in a human body. So I decided not to write until I could come up with something less laboratory like. Which I think I have done. So the deal is the Cancer likes my body and has decided to inhabit my ribs, hips and shoulders for a bit. Wandering around. We of course find this totally unacceptable. So a different Chemo regime has been adopted. Had my first treatment on Monday. The side effects have been very rough. I actually spent my first full day in bed on Wednesday. Couldn’t get up!
I have decided on a new treatment center. Cancer Treatment Centers of America. Treat the entire organism, the entire person, not just the disease, so I’m moving on from St. Francis in Hartford and on to integrative medicine. Nutrition classes, healthy food, acupuncture, a case worker. This might not seem like a big deal but I tell you, my treatment has seemed/felt so slapdash the last few months that some good organization with concentration on my whole being is looking to me right now like an oasis in the desert!
I am looking forward to this switch.
Frustration with insurance companies is mounting. Tate was scheduled to have a PET scan on Monday after his 3rd round of chemo. A PET scan will give the doctors a good sense of how well the chemo and radiation have worked thus far. This means that they can change the chemo protocol if the results aren’t what was anticipated.
On Friday Tate received a phone call from the oncologist’s office that said that he couldn’t have the PET scan on Monday as was planned. He was told the insurance company hadn’t cleared the procedure. Yesterday a letter arrived from the insurance company that explained the delay. They were denying the procedure, saying it wasn’t “medically necessary”. They don’t think that the procedure should be done until the end of the chemo. This totally negates the idea that the scan should be done so that if it isn’t working well the protocol can be changed earlier rather than later.
We’re lucky. The oncologist’s office is willing to fight for Tate’s need for the scan. But insurance companies know that if the doctor doesn’t take on the battle, as many doctors won’t, people may not have the time or energy for the fight. When people are very sick, especially if they don’t have advocates, they are less likely to get into an all-out battle with an insurance company. And that’s what the insurance company counts on.
So now we’re hoping that the scan will be done on Tuesday. And if the insurance company continues to deny his right to have the procedure, we could be in for a long fight.
So, insurance companies be damned!
Hoping for the best,