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No news is not necessarily good news

July 1, 2005 - 10:34am

I know we haven't updated this site concerning Helena's health on this list in a while and most of you have probably assumed that "No News Is Good News", but that's not the case here, unfortunately.

This is what's happening now. I'll fill in the rest of the past year or so later.

On May 20th, Helena had a CT scan which showed new tumors in her liver and a lower back muscle. A biopsy was performed on June 8th. This showed that the cancer has taken on "more aggressive" characteristics (that means it is growing faster). Over the last 3 weeks, her appetite has diminished drastically and she has lost a lot of weight, she has gotten very unsteady on her feet, had dizzy spells, and felt tired and weak. She's been in a lot of pain from the tumor in her lower back muscle.

Yesterday we went to Fox Chase Cancer Center for a previously scheduled appointment. After looking at her blood work, which showed an elevated level of calcium, her doctors decided to admit her to see why everything is happening and to map out a course of treatment.. Her medical oncologist, Dr. Langer, said that certain cancers will cause that to happen. The doctors will try to stabilize her weight.

She's in room 112a.

Update 1, July 1st (afternoon)

July 1, 2005 - 6:37pm

I went to see Helena for a short time this afternoon. She was happy to see me. Her Mother and brother-in-law came in a few minutes later. She was drifting in and out of sleep, so we didn't stay very long. She is getting Ensure so she can get some nutrition even though she's not eating much. One thing that concerned me was that she didn't realize today was Friday, she thought it was still Thursday.

I expect that she will be in the Hospital at least until the middle of next week. It will probably be longer, since her main doctor will be out of town next week at a conference.

Her doctor called me late this afternoon on the way to the airport. He said that they were able to get the level of calcium in her blood down, but her liver is not functioning well. He still thinks they will be able to get her through this.

Here is the address if you wish to send cards:

Helena Robinson
Room 112a
Fox Chase Cancer Center
333 Cottman Avenue
Philadelphia, PA 19111-2497

The phone by her bed is turned on from 11am to 9pm for incoming calls. The phone number is 215-728-3418.

Visiting hours are 11am to 8pm.

Update -- July 3, 2005

July 3, 2005 - 11:55pm

I went to see Helena today. She was sitting in the chair next to the bed and looked pretty good. She said she was tired, but seem to perk up while I was there. She's still coughing quite a bit and there is still congestion in the chest. While I was there, the nurse came in with 4 potassium pills because the potassium level in her blood was too low.

She seems to be eating more, at least she says the food tastes ok (amazing for hospital food! :-) ). Last week she was saying that all the food had a weird taste.

She still seems a little disoriented at times. She will start to talk about something completely out of left field with no connection to anything that was just being discussed.

I printed out all of the email messages that you folks sent. She was very happy to read them (she also filled me in as to who some of you are...).

In case any of you are wondering, I'm doing better as she is doing better. I was very distraught on both Thursday evening after I left the hospital and on Friday evening after I spoke to the doctor.

I will be going to see her on Tuesday. I will be bringing my laptop and since there is wireless in the hospital, she might get on AOL briefly.

Update, July 2 - afternoon

July 4, 2005 - 5:25pm

I spoke to Helena on the phone today.

Her voice sounded much stronger than it's sounded in the last week or so. And she didn't sound as tired or out of it. She managed to get out of the bed to sit in the chair today. This is a good sign. She's been getting oxygen, probably because the cold she had went to her chest and she wasn't breathing properly.

I mentioned all of the email message people have sent. If anyone is in the area of the hospital in Philadelphia and could stop by for a visit, she would be very happy.

I will be going to see her tomorrow and will print out all the email I've received.

Update -- July 4, 2005 (Happy Independence Day)

July 4, 2005 - 11:28pm

I spoke to Helena on the phone this afternoon. She sounded a little out of breath, but that was probably due to the fact that she just had some respiratory therapy. And there's still some disorientation when she talks.

Today they told her that her electrolytes were out of kilter, so she was given another type of drink.

She's finally able to read a little bit again. Yesterday I brought her the paperback book she wanted. I'll really know she's getting better when she wants to read the newspapers again.

The cough is still lingering ... the cough medicine they've been giving her helps a little.

Both of us have figured that she probably won't be released until after next weekend. Her primary doctor won't be back from the conference in Spain until July 11.

Update -- July 5, 2005 -- If it's not one thing, it's another...

July 5, 2005 - 11:48pm

I went to see Helena this afternoon (Tuesday) for a few hours. She seemed more tired than she was on Sunday and she seemed a little paler. Today's question ... why is her blood pressure higher than usual/normal. When I was there the upper number was 154 (I didn't hear the lower number). Helena said that was down from this morning when the upper number was about 170.

I spoke to the physical therapist today. She said that Helena should go to a facility where she can get in-house physical therapy after she is discharged from the hospital and before she comes home. Fox Chase will look for something close to our house. The physical therapist brought her a walker and got her up briefly

Her cough is finally lessening in intensity. The biggest problem so far is that the oxygen feed to her nose won't stay in place. Normally the tubes are draped over the ears to keep it in place, but since she has only one ear this does not work very well. I volunteered to bring in one of my old CPAP masks with the full head gear, but the nurses didn't take me up on it.

Update -- July 6, 2005

July 7, 2005 - 12:01am

I spoke to Helena briefly on the phone this afternoon (Wednesday).

The nurses mentioned that her blood pressure had gone down. One of our friends went to see her today and called me afterwards. He said that she seemed short of breath. I asked her about it and she said that it only happened occasionally. I'll try to find out more tomorrow when I go to see her. Our friend also said that she seemed more tired than when he saw her over the weekend.

Helena said that a few doctors stopped in her room this morning and said she had stabilized medically. She asked if they had called me ... the answer was "no".

Hopefully, I will have more to report tomorrow (Thursday) after I visit her.

Update -- July 8th

July 8, 2005 - 10:23am

I went to see Helena yesterday (July 7) in the late afternoon/early evening. She seem more tired than earlier in the week (although that can be attributed to the physical therapy she's been getting) and her cough seems worse (the nurses say that's because she's not moving much).

I think she has more strength in her legs than she thinks, since she was able to get out of the chair without my help. She's also eating more now, so that should help her strength come back.

Once the insurance mess (COBRA won't kick in until they get the check) is straightened out, she will probably be moved to a treatment center to get physical therapy. That will probably happen early next week. Her main doctor will be back on Monday and that may change depending on what he says.

It's the Weekend Update (no, it's not SNL)

July 10, 2005 - 9:57pm

I visited with Helena on Saturday (late morning, early afternoon). To me it seemed as though her condition had gotten worse again -- dropping off, tired, no appetite, lethargic, etc. One of our square dancing friends, who is a retired nurse, said that many professionals called that a "Liver Fog" caused by the liver not working correctly. I also noticed that she's not hearing everything being said correctly or at all.

I also spoke to her on the phone tonight. Her voice sounded stronger, but she still said she couldn't hear me very well.

I will be going to the hospital late tomorrow morning.

The hospital staff was saying that she was well enough to be transferred to a physical therapy facility, but I'm not so sure. If she had continued to improve like she did after the first few days, then there would be no question, but with the deterioration of her condition I now have questions about the wisdom of that decision. I'm glad her main doctor will be back tomorrow and can reevaluated the situation.

July 11, 2005

July 11, 2005 - 2:55pm

Dr. Langer, Helena's main doctor, saw her today and he said that there was no reason for her to be kept in the hospital even though he would rather see her kept in the hospital, so she's being transferred to the Franklin Care Center, 3371 Route 27, Franklin Park, NJ this afternoon.

More about Helena's new digs... :-)

July 11, 2005 - 9:40pm

As I said earlier, Helena was moved today to a rehabilitation facility in Franklin Park, NJ. About the only good thing I can say about the place so far is that it's only about 20 minutes from our home instead of an hour and a half.

Here are my complaints so far ...

Her room was way too hot.
The phone won't be turned on until tomorrow.
They don't supply a TV (Does anybody close have a small TV/VCR combo we can borrow?)
They don't get cable once you supply a TV (hence the request for the VCR)

Second day in the Rehab Facility

July 12, 2005 - 10:20pm

I saw Helena this afternoon. She seemed more alert (actually I was falling asleep since I didn't sleep well last night), so maybe the medicine her doctor prescribed to cleanse the blood is working. She still looks very pale. She was coughing less today. She still has a way to go before she will be strong enough to withstand treatment of the tumors.

When I got there, the Physical Therapist was there explaining things.