I  did not drive down the weekend before last, however I did drive down on Thursday as opposed to me my usual Friday  this week, in order to be there to talk with her oncologist.

There is some signs via an MRI that the tunor is progressing, or that it could be contrast from bacteria infection. I am going with tumor, as she as been on plenty of the very potent antibiotics.

Anyway, her mental status during the day at the clinic (labs, MRI, Dr visit) was better than normal, showing a lot of attention etc, and some small verbal.

Since then , maybe a little slowdown, although hard to perceive. We were hoping that the gains would continue.

Because of the chance the tumor is re-emerging, she will be put on new chemo this week,  (Avastin). which brings its own set of problems, primarily the risk of clotting.

All of us are carefully watching her condition.

Thanks for all your support,

Scott

Pat had her final radiation treatment on Thursday September 27th !

I arrived in Durham on Friday, and at the home, Pat was doing quite well, she was acknowledging, responding to questions , and smiling at jokes. Physical therapy came by and I convinced them that Pat could stand up. So we got her to sit on the edge of the bed for a while, then gently pulled her onto her feet, and she was up. We probably stood there for 5 to 10 minutes, and I got a hug :). This was all in an effort to convince them that she could be put in a wheelchair and wheeled about. PT gave her a wheelchair, but then I was informed that she wouldn’t be able to leave the room because she was still under contact precautions. Long story short, that was changed so that she would be allowed to leave her room as long as she stays 6 ft away from anyone else.

On Saturday, Pat had a small fever in the morning and also got sick. I think that pretty much ruined the day for her, as she slept for the rest of it. That was OK, it was a dark, dismal, rainy day in Durham, a good time to catch some ZZZzzzs.

Sunday (Today) , she was awake and responding well when I got to her room. I fed her breakfast, but shortly thereafter they came in to clean her, and when they rolled her onto her side, she got sick, so much for breakfast. Then she pretty much didn’t want to do anything else, and went to sleep. I woke her up at 12:30, and fed her a little lunch, we watched a little TV, but she was tired, and nodded off again. Now it’s 1:30 PM and she still asleep, and I’m hoping my typing doesn’t wake her up.

I was hoping I would be able to get her into the wheelchair today, but that doesn’t look likely.

Thanks for all your support,

Scott

Hi all,

I received news from Vija that Gary passed away on Tuesday. My heart felt condolences go out to the Pittenger family.

Gary and Vija are very good friends of ours, with a history with Pat that goes back to Michigan.

Vija, if there is anything I can do, please let me know

Scott

As you know , Pat was taken to the hospital on Monday, and on Tuesday she looked better. However, she was having low blood pressure issues, and was placed in the ICU Tuesday night.

On Thursday, they restarted her radiation treatments, a good thing.

When I arrived back in Durham Friday, she was still in the ICU. I heard however, that with the help of the physical therapy folk, she had walked the length of the hallway, which is very good distance, and a first in a very long time.

She was then moved out of the ICU that afternoon, back to the floor, and I fed her dinner (our anniversary).

Saturday she was a little tired, but still awake. Sunday, better than Saturday. She is doing better, its just going to take a while.

Thanks fort all your support,

Scott

Hi All,

I stopped by the hospital this morning on my out of Durham back to Norfolk, to check in on Pat.

It was amazing, she was sitting there, playing with her food. Said good morning to me!, and some other things. Was looking bright etc, and was using her hands.

A short whie later the neuro oncologist came in, and she held up 2 fingers on command, and said “Scott” when asked who I was. Some of these things she has not done in 2 to 3 weeks.  I was stunned.

After discussion with the oncologist, I learned that she had received 3 liters of fluid overnight (IV). Also that her culture had come back positive for bacteria in her blood. I pointed out the near 20 puncture wounds where they had tried to draw blood from her right arm (not happy about that). It may be possible that the positive blood results are from surface contamination of her skin. He had seen her in the ER, and also noted the improvement.

Her blood count is a low and she will be receiving a transfusion today, she will also get another spinal tap to check for bacteria. If she does have an infection they need to find out where it is.

Mom and Dad visited her early afternoon and she was watching TV , and being non responsive. We are chalking that up to being tired. But I did feel bad they didn’t see her the way I did earlier.

Thanks for all your support,

Scott

I’m still in Durham.

On Mondays, I usually wait for Pat to come back from radiation before getting on the road back to Norfolk. Today when she returned she vomited. After that , her temp was taken which was 101.7. Duke was called and she was take by ambulance to the ER. She will be admitted back into the hospital for at least a few days. During that time her radiation and chemo will be put on hold.

Thanks for support,

Scott

Hi All,

Pat continues on her path, I’m back in Durham and have been since Friday. She is still making little steps,  but seems to have plateaued a bit. This could be due to the radiation treatments and chemo. I’m pretty sure I see an improvement from Friday through the time I leave, if for no other reason , she does not get radiation on Saturday and Sunday.

Pat is going to be finishing up her radiation treatments in 2 weeks. The oncologist here in Durham think it’s a good idea for us to move her back to Norfolk. In her current condition that probably means into another facility until she improves well enough to go back to the house. Right now she really doesn’t speak, she cannot move herself, walk, or  feed herself.

She has aphasia which is a difficulty in communicating, conversations are usually someone speaking with short yes no questions. I am convinced she does understand most things at times, however her ability to communicate back is impaired. We do expect her to get better.

Pat will be leaving Durham, after radiation. We don’t have a definite date as I have to line something up in Norfolk.  If anyone in our area has a suggestion, please let me know.

Thanks for all your support,

Scott

I arrived Friday. Pat continues to improve in very small steps.

Still not very verbal, but you can say something and understand the facial response. Still on the horizon is the ability to feed herself and walk (and some other things).

Today, Sunday, after I took her for a long wheel chair ride , ice cream, coffee (in the facility). I managed to get her to walk from the chair to the bed. Of course hanging on to me , and I guiding her steps. It is a slow process, but it ended with me asking for a hug and getting a really good squeeze from her. That made my day 🙂

Thanks for all your support,

Scott

As usual  called Dad today, around 4 PM. Pat is making more progress. Drinking coffee out of a cup and using a spoon to eat ice cream,

Best of all, she held Dad’s cell phone, and talked to me, not much, but a definite “Love you too” and a few “ok’s” and a few kisses.

Thank for all your  support,

Scott

Today was even better than yesterday, and although Pat is not verbally communicating, other than one word answers, she is communicating via facial expressions, shrugs, shakes and the like. Pat is a quiet person to start with, so I am schooled in these. A lot are her typical mannerisms.

We had many conversations today, me talking, her communicating back non verbally, but make no mistake they were conversations. A lot were about her condition and how much more she had left (Radiation, etc), that I would be returning to Norfolk tomorrow, also about  staff, and other things.

There is also some things that Pat achieved, that due to their sensitive nature, I will not discuss in this forum, but were equally as important.

On specific bright spot was me asking if she wanted some water, and her replying “Yes , please”. That alone is great, I then asked if she wanted to hold it, and I held out the cup with the straw. She took it, and holding it correctly , drank. That made it even better.

I pushed her around in the wheelchair quite a bit, she had some ice cream (they have a little ice cream section at the facility) .

A good day 🙂

Scott