A different sort of place

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,

Karen

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  1. #1 by Matt on May 24, 2012 - 8:26 pm

    I am so happy to hear about the quality of care Greg is now receiving. Good you him, and good
    everyone who cares about him.

  2. #2 by Elvy Stepinoff on May 24, 2012 - 9:27 pm

    Thank you Karen for all that wonderful info. It does sound like a special kind of place. When Denny was getting his treatments, all those years ago, he had very similar reactions as you describe w/Tate. That is, he had no appetite, very little energy and would fall asleep in mid sentence, and mid action. The sleep part was largely due to the pain meds he was taking. Over the 8 weeks of his treatments he lost over 50 pounds. But with plenty of rich ice cream he gained it all back.
    Good luck to you both, and send Tate our love.
    Elvy & Denny

  3. #3 by Martin on May 24, 2012 - 9:44 pm

    Karen, thank you for being such a special person in Tate’s life. While I was in Hartford I was getting introduced to the world of friends that Tate made outside of where I’d known him first in San Francisco, and while I can’t say I was surprised that he had surrounded himself with such wonderful loving people, (since I know you pretty well Greg 😉 A big heart begets big hearts)… I was touched by all of the people I met. Nothing made me happier than seeing Greg in that loving environment, and at the center of a lot of that excellent experience I had in Hartford last year was your relationship to him. I am so grateful… I think about you all the time Karen! Big hugs for you! and Pass on a couple to our favorite “Big Man” for me too.

  4. #4 by Maureen on May 24, 2012 - 10:13 pm

    Karen, I am so grateful to hear this….that Tate has followed his intuition to get this place! Bernie Siegel will be proud of him!!! love Maureen

  5. #5 by Mari on May 25, 2012 - 12:57 am

    Wow Karen this is such detailed and informative information and makes me feel more in the know. It really does sound like an amazing place and even though he is so far from us it seems to be the best place for him.

  6. #6 by Mari on May 25, 2012 - 12:58 am

    Karen does Tate ave access to text messages and his phone still.

    • #7 by Anonymous on May 25, 2012 - 1:03 am

      Absolutely! I think he’d love to hear from friends. Texting would probably the best way to be in touch.

  7. #8 by JoAnne Bauer on May 25, 2012 - 1:28 pm

    All helpful news and so informative — good to know this place exists. All the best.

  8. #9 by Anonymous on May 25, 2012 - 4:18 pm

    Oh Karen–what a relief to have this news. Thank you so much for keeping us all in the loop. Please send BIG love to Tate and to all of you as well…we will miss you at Bernie’s next week. xo pam

  9. #10 by Nina on May 25, 2012 - 10:28 pm

    Dear Karen & Tate,
    I am so glad to hear the latest–it sounds like Tate is REALLY in the right place. For both of you, and for his many friends on this blog, I’m attaching an article (don’t miss the musical video clip!) that made me laugh, cry, and try to picture the way Tate would boogie to this bedside band:
    http://well.blogs.nytimes.com/2012/05/24/life-interrupted-the-beat-goes-on/?ref=health
    Lots of love and keep getting well!
    Nina

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