I've decided to make one web site to make it easier for people to get information about Helena's experience with ACC.
Helena passed away on July 25, 2005 at 10:40 am.
From here you can:
Dr. Sen came to see to see us at about 3:30pm and said that everything went fine. :-) He removed everything he could see (of the tumor) and saw good margins. He also reported that Dr. Costantino used the left trapizias flap for the reconstruction which also went well.
He also reported that Helena was awake in the Recovery Room and was able to move everything fine.
I was able to see Helena in the Recovery Room at 4:30pm. She looked very good, had good color, a strong grip, and could talk.
The doctors are saying that if all goes well, she could be out of the hospital by Wednesday. Before Thanksgiving! :-)
I will let everyone know when she can have vistors, get flowers & cards, and get phone calls.
I will be going in on Sunday and if she is ready for calls and/or cards I will let folks know. It may be safer to send cards to our home address, since she might be coming home before the cards can reach her in the hospital:
614 Van Liew Court
Hillsborough, NJ 08844-3244
She's in Patient Area 10B, Room 26, Bed A. She can have visitors. Visiting hours are from 11am to 8:30pm. So if you are in the area (St. Luke's Roosevelt Hospital, 1000 10th Ave (between 58th and 59th streets)), stop by for a visit... She does have a phone, but would rather not receive phone calls. I will be taking her laptop in tomorrow, so she may be on-line tomorrow...
They had her sitting in a chair today. The unhooked the intravenous tubes and she was able to walk a little bit. She doesn't look like she had major brain surgery two days ago. :-)
We're still hoping that she will be coming home before Thanksgiving, but if she doesn't get out then, she will be able to barely see the Macy's Parade from one of the windows on her floor... :-)
Thanks again for all of your support and prayers.
Today the physical team spent time walking with her and she was given a cane to help steady her if she walks alone. Tomorrow, it's the stairs! :-)
Tomorrow when I get there, I will set up her laptop, so she should be online sometime in the late afternoon.
Visitors are welcome to come. Visiting hours are from 11am to 8:30pm. Directions to the hospital can be found here: http://www.wehealny.org/patients/stluke_directions2.html (you want the directions for the Roosevelt Division)
Cards should be sent to our home. This way she will get them. If cards get to the hospital after she is discharged, they don't always get forwarded. Our home address is:
614 Van Liew Court
Hillsborough, NJ 08844-3422
One of the drains was removed today. After the other one is removed, she will probably be able to come home. We're hoping for tomorrow, but given the weather forecast for the first snow of the season, I don't look forward to the drive into NYC to pick her up and then leaving in the Thanksgiving out bound crush. But if they say she's able to go home, I will do the drive... :-)
One slight down side ... she is in quite a bit of pain and discomfort where the flap was taken (left shoulder), but the pain medication (Percoset) does get rid of the pain.
The physical therapy folks have been working with her, with some exercises, walking and stairs steps.
I was able to set up her laptop today and we were able to connect to AOL. She thanks everyone who sent messages. If you want to contact her via email, her email address is HelenaTR@aol.com.
Thanks again for all of your prayers and thoughts.
They are all very impressed with how well she has healed.
No she's not home. :-(
They took the last drain out but the wound was still oozing fluids.
The bad part about this, was that we weren't told until 6pm that she wasn't going home today.
She's being moved back to the ICU today. The doctors don't like some of the discharge in the drains.
We think that they removed the drains too soon yesterday.
The new drain seems to be doing it's job. The upper wounds are now dry again, which will let them heal.
She is getting some headaches, but the doctor indicated that the Lumbar drain can cause them and not to worry unless they get very painful.
She will probably be in the ICU at least until tomorrow and in the hospital at least the weekend. The nurse said the earliest she could be released would be Saturday evening. But after yesterday, I would rather they keep her a day or two longer instead of trying to get her out sooner. Also, if they keep her there longer, maybe they will remove the stitches before she goes home, so we don't have to go into NYC again so soon...
Since she's in the ICU, she doesn't have her laptop with her. I will bring it back once she's in a regular room again.
The good news is that there is no sign of infection and the wounds are healing again.
Dr. Sen apologized to Helena for not being able to send her home on Wednesday, but said we were lucky that the problem occurred while she was still in the hospital. If I had taken her home and this problem occurred, then she would have, most likely, gotten an infection which would have put her back in the hospital for an even longer stay.
As to why it was needed in the first place, the doctors believe that all of the surgeries that she has had in that area caused problems with the wounds healing.
She is still getting headaches, some are worse than others. While I was there, she was given Morphine to kill the pain, since codeine and Percoset didn't help. The Morphine helped.
She seemed to be in better spirits and more alert than she was on Saturday. She indicated that she was getting fewer headaches and that the percoset was able to control them.
She wasn't drifting in and out of sleep Sunday as she was on Saturday.
Hopefully the drain will be removed on Monday Morning. I expect that the earliest she would be able to come home would be Wednesday, but I doubt the doctors are going to try to rush her out this time.
At about 5pm we got word that she was being transferred out of the ICU. While waiting for this to happen, Dr. Sen stopped by and said that if things look ok tomorrow (Tuesday), there is a strong possibility that Helena will be able to come home on Wednesday. Of course after what happened last Wednesday, I'm not going to put out a message until she's actually home... :-)
She is now in room 10B-21B. She has a phone, but requested that I don't publish the number.
While I was there, one of the doctors came to check on her. There seems to be fluid just under the skin of her back that's been accumulating since they took out the drain. Because of this, I highly doubt that she will be coming home tomorrow.
But I would rather she be kept in the Hospital until everything is ok instead of being sent home too early.
Other than that she is getting better. We went for a walk after I got there and made it the whole length of the hall and back to the room. (Her current room is at one end of the hall).
We just got home, with a stop at the drug store, just over an hour from the hospital to home...
Let's put it this way: Although we didn't expect this surgery to be an easy one, we sure didn't anticipate what we had to endure these past few weeks. At least it's now over!
I came home much more wobbly than usual last week, and found myself depending on the cane the therapists gave me; particularly after a fall my first morning home that put a scare into me. Fortunately, I was able to give up the cane on Monday; and successfully made my first trip down the stairs that evening as we headed out to get me a Procrit shot.
We spent today's lovely (!) wet weather driving to New York and visiting the ENT Gang to get my stitches out; hoping and hoping all would go well so we wouldn't have to figure out what to do next week in the event the city's transit system shuts down. Fortunately, the doctors were pleased with the way things are healing; and I don't have to go back until January 8. (They really wanted me back in two weeks, but the holidays got in the way.) And Ken was pleased to only have to resume hairwashing and not have to worry about bandaging my head.
So with that bit of good news, we can really begin to begin getting back to whatever passes for normal around here. I've had surprisingly little pain; most of it in the left shoulder. One of the things we received from the doctors today was a prescription for physical therapy (primarily to regain range of motion in that left shoulder/arm); so we'll be investigating that over the next few days.
It's taken awhile to get my eyes back in focus for any extended length of time; which limited my ability to read newspapers and hang out on the computer. I finally began reading the papers on Friday; and logged in on Friday afternoon to see over 600 messages (of all sorts) waiting for me on AOL. Now that we've gotten past today's medical hurdle, I hope to finally be able to read all the e-cards and respond to all the lovely messages over the next few days.
Nevertheless, now that I'm home and finally able to resume more normal activities, THANK YOU ALL for the lovely notes, cards, thoughts, and prayers sent to both Ken and me over the past few weeks. They have tuly meant a lot to us both!
We hadn't realized it had been soooo very long since we last posted any news from here - sorry 'bout that! Perhaps we kept putting it off so we could possibly combine it with some better news - like both of us finally being fully employed.
Alas, both of us are still unemployed. It's been over a year since Helena was downsized; and Ken's contract with ExxonMobil ended at the end of January. Although Ken has picked up an occasional short-term job (like a 2-3 week or one- or two-day deal) and some web design work, these don't pay enough bills, sad to say.
Until these past several weeks, Helena hardly received any phone responses to the many resumes she'd been submitting. She finally had some real face-to-face interviews in June, but no offers. We like to think we're inching ever closer to offers, but the wait is certainly frustrating. Helena's unemployment benefits ran out a few weeks ago.
If anyone's interested in seeing Helena's resume, feel free to request it by e-mailing her at HelenaTR@aol.com
Perhaps the one good thing to say about staying home like this is that we didn't have to worry about driving to work (or to a train station) in this winter's "lovely" weather. :-) Oh yes, Helena has completed many more stitching projects this year. We promised the folks at our favorite framing shop that some day they'll have lots of work to do.
As a result, there was no vacation away from home this summer - first time since we were first married that we spent the entire month of June at home. Very strange feeling, that's for sure.
Of course, one thing that has remained somewhat constant has been the tests and checkups. Fortunately, the lung tumors have remained stable, thanks to Gleevec. :-) And the March brain MRI, the first since the November surgery, was clear, to the delight of all.
June, however, proved to be another matter. This MRI showed a 1 cm nodule that was deemed "very suspicious for recurrent tumor." (Let's say this report wasn't exactly the birthday present Helena was hoping for.) We saw Dr. Sen, the neurosurgeon, in early July and he recommended stereotactic radiosurgery since the nodule was so small. At this point, anything that can be done to prevent another trip to the OR...
So we called Dr. Marshall at St. Peter's the next day - only to discover that he was about to leave that facility. Fortunately, we were able to get an appointment for the following week. He seconded the recomendation for stereotactic, adding that the nodule was probably in a very good place: "floating around in the middle of nowhere." Actually, it's sitting in some fluid in a cavity left from the last operation; not impacting anything critical.
Dr. Marshall arranged for us to see a colleague at Fox Chase; so last Monday we met Dr. Feigenberg. Yes, we broke in yet another doctor. :-) After discussing the history and Fox Chase's way of performing this procedure, we were off to contemplate this next adventure - while everyone else was getting their calendars in sync.
Sooo... Tomorrow it's off to Fox Chase for an MRI. Assuming there are no surprises, the procedure will take place on Thursday, July 31. Like the last procedure, back in January 2002, this will be one long day; but this one isn't supposed to last quite as long. (For one thing, we don't have to arrive until 7:30 a.m., compared to 6 the last time.) Nevertheless, Ken plans to get lots of web design work done on his laptop, and Helena will probably catch up on videotapes. (We were told to bring videos, but if there's a TV with CNN...)
And that's the latest, such as it is, for now. Hope all's well with all of you!
Well folks, We've managed to survive this round of stereotactic radiosurgery. We'll see how well things REALLY went when it's time for the follow-up MRI in three months.
In the meantime, let's just say this was more complicated than anticipated - and certainly not as pleasant an experience as I had had in January 2002. So, what happened this time???
I had undergone a brain MRI on Monday to give the docs a more current basis to work from. Turned there were now more nodules to be dealt with. Whereas the original nodule was 1 cm, the new scan showed as many as four others scattered about. All were very small, on the order of 5mm, and Dr. Feigenberg, the radiation oncologist, was still optimistic he could zap all of them.
We headed for Fox Chase beginning at 6 on Thursday morning. Since Ken has an interview tomorrow morning in King of Prussia, PA, this was a good opportunity for him to get some idea of what early-morning traffic was like in the Philly area. We managed to arrive at the hospital about 15 minutes earlier than our usual 90 minutes. Although we were supposed to be there by 7:30, those 15 minutes turned out to mean little - the staff had yet to arrive. The nurse showed up around 8, and the neurosurgeon finally arrived just after 9. We began to get the idea this day was going to be longer than we thought...
Instead of a regular hospital room, with bed and regular TV, we were placed in an examining room equipped with a video player for the day. We were told to being tapes with us, which we did. And, of course, Ken had his laptop with him; and he got lots of work done.
The IV was finally started, but for some reason my veins didn't feel like cooperating, which made the preparation that much longer. (I had a similar problem on Monday.) Then came the most painful part of the procedure - getting that stereotactic ring screwed into my head. Think of getting more shots of novocain than you'd ever want to experience and multiply it by some large factor. Although this WAS the worst part of the deal (at least up to that point), after about a half-hour or so, the stuff sitting on my head was more tolerable - actually, much less uncomfortable than I had feared.
I finally arrived at the CT scan at 10 a.m. for not only the usual round of pictures, but also some extra prods through the helmet placed on top of the ring while the doctor took measurements that would eventually be fed into the computer to determine how I'd be treated later in the day. It was 11 a.m. by the time this was all over with and I could finally have something to eat. (I couldn't have anything to eat or drink after midnight, and I was really hungry by then.) Like last year, the ring came just close enough to prevent me from fitting a pair of glasses through it; so as I had expected, I spent much of the time watching the tapes we brought.
By about 3 o'clock or so, I was beginning to feel the discomfort I recalled from last year. Since Fox Chase is very cognizant of pain management, I was offered a choice of either an injection of painkiller or percoset. Since I really didn't want another shot (the ones I got when the ring was screwed in were bad enough) and percoset and I got along (or so I thought), I opted for the pill. Eventually, we got some cake from a staff member's going-away party that put a little more food in me before the procedure, which had yet to begin.
About 4:30 or so, I began to feel a slight wave of nausea; but some water and a mint seeed to stave it off. Little did I know the worst was yet to come...
I was finally taken for the actual treatment just before 5 p.m. Like last year's event, it's a very open situation - not the claustrophobic's delight of the MRI or even the donut hole of the CT scan. Ken took pictures of me (for future posting on the web site) wearing the ring, and the plastic "space helmet" that's used for taking measurements. (At first he thought it resembled a colander, I thought it was more like an old-fashioned hair dryer, and the staff referred to it as "the hair dryer.") I laid on a table with the cages on my head while a linear accelerator passed over me several times. At least that's the way it was supposed to be.
Unfortunately, I suffered a big bout of nausea just after the second pass; and it took awhile to get things cleaned up and for me to rest before the treatment could be resumed. The scene was repeated a few hours later, and by 9:30 it was decided that I would be kept in the hospital overnight for observation due to the nausea. I was given the option to stop the treatment and return another time, but who wanted to repeat this again??? I told the staff I just wanted to get this over with, and Ken was sent home with food from the nurses.
The treatment was finally over at 10:45 p.m., punctuated with one more bout of nausea - as if there was anything left to lose. My head was finally freed from the confinements of the day, and I was placed in a real hospital room by about 11:30. Because of the parade of medical personnel coming and going while taking various histories, I didn't get to sleep until after 3 a.m. I woke up at 6 a.m. feeling fairly alert, all things considered. I was eventually given a full liquid breakfast because of the nausea, but what little I had stayed down with no problem. A doctor came later that morning to inform me that if I could keep a regular lunch down, I would be able to go home in the afternoon.
Alas, lunch didn't show up until 12:15 p.m. - another liquid one. It was yet another hour before solid food finally arrived. At least it stayed down with no problem! Ken arrived shortly before noon with my laptop, so I did spend about an hour online while waiting - and waiting - for someone to complete my discharge papers. The papers finally arrived just after 4 (while Ken was at the Radiation Oncology department getting their orders for me), and we finally left just before 4:30 p.m. We finally got home at 6 p.m.
The one difference between this experience and the last one, aside from what you've already read, is that I wasn't given any medication before the procedure - I had begun taking brain surgery medication 5 days before the last one. This time, I was only sent home with a perscription for one of the pills (decadron), to be tapered down in about a week or so. Even better, Fox Chase had my daily medications ready for me for Friday morning; even though we had brought a supply with us (along with toiletries, a nightgown, and underwear "just in case").
In general, aside from being tired from not getting enough sleep since Wednesday, I am doing better this time than last time. Then again, I had no plans to be out of the house this weekend - and given the very humid weather here, it's just as well I stay indoors. However, I do have some local errands to run tomorrow, including getting my weekly shot of Procrit, so we'll see how that goes. But I feel more up to it this time than last year.
So, that's the way it went!
Those of you who have followed this saga of mine all these years are aware that many of the more unpleasant times have occurred in the month of November. Well, here we go again...
This segment, though, began somewhat differently for me. I started experiencing some occasional bouts of nausea in the mornings starting in about late September or early October. My weight began dropping, to numbers on the scale I haven't seen in years. I started popping more Tylenol than usual, often a hint of something amiss.
I was due for a followup MRI after July's stereotactic radiosurgery at the end of October, and the scan took place on Monday, November 10. Dr. Feigenberg from Fox Chase called me from the Charlotte Airport the next morning with the bad news: a 3.5 cm tumor in the back of the brain, in the area that had been operated on more than once before. The world basically stopped then and there for us.
We saw Dr. Sen in New York the following Friday, the 14, and he said he didn't want to operate on that area again if he could at all help it. So, we had to wait until our scheduled appointment on Thursday, November 20 at Fox Chase. In the meantime, I did have the scheduled lung CT, which at least showed stability. One piece of good news.
But that Thursday was more than a little difficult, to say the least. I kept feeling "things" - every little bump just seemed to mean something. It's difficult for me to keep my reading glasses on for too long at a time in order to focus on writing, typing, etc.
Bottom line for now: We're about to begin radiation therapy, about 10 to 15 treatments in hopes that this will help shrink things down so I can finally get myself back to some semblance of normalcy. The doctors appear optimistic that this will help, and we just have to keep on having faith that this will be true.
I underwent an MRI simulation at Fox Chase that Thursday afternoon, then returned for an accompanying CT scan with a mask they've created for me to direct the radiation beams. The doctors will then use the results of the two films to determine the actual course of treatment.
If worse comes to worse, we go back to surgery, where healing will once again be difficult.
Needless to say, this has probably been the most difficult time I've ever had with this stuff without being in the hospital. To further complicate matters, neither of us are still working full-time. That means I've been witout a job for a year and a half now; and the creditors are far from happy. (Although there has been an occasional interview, no offers have resulted.) What little money we have is draining more and more quickly. It's sometimes hard not to feel that things are just falling apart all over.
But for now, tomorrow, we begin the work of radiation. Except for Thanksgiving, I anticipate treatment every weekday. An hour and a half drive to Philadelphia for a procedure scheduled to run about 45 minutes start to finish. Admittedly. this has been a pretty antsy time here in limbo, waiting to finally get started on getting this over with. But at least tomorrow we'll begin!
For those interested in my Hebrew name, it's Chaya Rachel ba Tzvia Bleme. Your support and prayers are ever so appreciated by us - especially now.
This past week marked our 25th wedding anniversary - March 25th to be exact. That leads the good news we have to share in this note.
First of all, Ken is finally working again. On February 2, he began a full-time position with Verizon Wireless as a Senior Member of Technical Staff. In laymen's terms, he'll be a systems manager, as he's been for years. He's based in Orangeburg, NY (a 90-minute commute), where the computers he supports are physically located. After awhile, the powers that be will try and find him a cubicle in the Warren, NJ office; which is located about 20 minutes from our home. Needless to say, we've been busy trying to adjust to the "new hours" - especially the impact of traffic delays - this new schedule (of sorts) has produced. However, Ken loves his job in spite of the commute.
As for the ever-present medical stuff... (OK, so we've overdone that "in sickness and health" stuff all these years.
Radiation therapy began shortly before Thanksgiving at Fox Chase and was completed about two weeks after Thanksgiving after 10 treatments. And THEN the hair fell out - this tme much more noticably than in 1982, so it's been back to turbans.
However, recovering from the effects of the treatments, mostly the effects of the steroid that really affected my legs, proved quite challenging. It wasn't unti late January or early February before I could finally move around the house almost normally - especially getting up from chairs or climbing up stairs. I finally got back to driving the car in mid-February.
We were also submjected to "New Horizons in Red Tape," courtsey (!) of Schering-Plough, which manufactures a brian tumor drug that was perscribed for me at the end of November. However, since my medical benefits (COBRA) ran out on December 1, we were told we should be able to get the drug for free under Schering's "Commitment to Care" program. Let's see... They finally sent us the paperwork around Christmas and Ken faxed them 18 pages right after New Year's - only for Schering to call us for itemized statements, then complaining one day later when Ken left out a line (which required yet another notarized letter). After another few days, I finally received the call that I was accepted at 100 percent.
The drug in question is called Temodar - or "birth control in reverse," as we've joked. You see, one takes pills for 5 consecutive days - and then nothing for the next 23 days. Strangely enough, even though I took an anti-nausea medicine prior to taking the drug each night, I would take laps to and from the bathroom only on the first night.
We saw Dr. Feigenberg on January 22. Apparently, the tumor that was targeted by the radiation had shrunk by 50 percent, but there were two small tumors on the other side of the head that were showing some limited signs of growth. The doctor was nontheless pleased, but decided to schedule the next checkup after I had completed three cycles of the Temodar to see whether the shrinkage was an effect of the drug or simply the radiation.
Our next checkup was Thursday, March 18, on the last day of the third cycle. This time the news wasn't as good: there was evidence of growth in all the tumors. So... It's back for more stereotactic radiosurgery. The procedure has been scheduled for Monday, March 29, at Fox Chase - hopefully, this one will go MUCH more smoothly than the last one, back in July!
So, we like to think we're making SOME progress... However, your good thoughts, prayers, etc. are most welcome.
We hope your 2004 has gotten off to a good start!
Well, another round of stereotactic radiosurgery has been completed - in much less time and "supplemental agony" than the last one. :-)
We were told to be at Fox Chase by 7:45 yesterday morning, and thanks to what seemed like less traffic than usual, we arrived around 7:10 a.m. This time we were taken by 8, and the frame was screwed into my head before 10. I felt much better this time than last - no pain, no nausea. :-)
I was taken for treatment around 3:15 p.m., and it was all done by 4:30. Things went much more smoothly, and the frame only began to hurt as the technicians were beginning to set up for attacking the second of the tumors being targeted this time around.
We were back on the road for home by 5:15 p.m. Although I wasn't in any pain, I was very tired, and fell asleep by 9 p.m.
I've been feeling much better today. The post-op steroids aren't affecting me like the last time - at least I can climb the stairs and get up from the sofa with no difficulty; a great improvement over this winter. :-)
So, now it's time to get back to something resembling normal - and schedule the next follow-up; which will be sometime in May, once Ken can determine a suitable day with his current work schedule.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 ...
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.
I went to see Helena yesterday afternoon. She was more alert and had more color in her face, but the rest of her skin had a pasty, dull look to it. She told me that she didn't feel well after breakfast.
The nurses got her dressed and she had physical therapy. She was also told that a nurse had to be with her if she wanted to walk to the bathroom, so she does not fall.
I've decided not to issue daily updates unless there are major changes (good or bad) in Helena's condition. If you don't see an update, it means that her condition is about the same as in previous email updates.
Right now she seems to be getting stronger physically from the physical therapy, but at the same time she's getting weaker, since she is hardly eating. It's not that she doesn't like the taste of the food, she gets nauseous just looking at it. Yesterday some friends of ours stopped by for a visit and brought some Ice Cream. She had a little bit. I brought a bagel today and she had one mouthful.
On the good side, she's no longer in the mental fog she was in a week ago, her voice is sounding almost normal.
What's concerning me now, besides that she is not eating, is that her resting heart rate in 121 bpm (I don't know what her blood pressure is) and her breathing sounds labored (especially when she's lying down). When she isn't constantly breathing the oxygen, the oxygen levels go down to around or a little below 90.
If she doesn't get strong enough for treatment or if she does and the treatments don't work, her doctor has told me that the prognosis isn't good (3 to 6 months at most).
I said I wouldn't do daily updates and wouldn't send anything out unless there were changes. Unfortunately, Helena's condition has gotten worse. I first noticed it earlier this week. She had declined markedly by yesterday and it was really bad today.
Basically, she had stopped eating other that one or two bites of food. Yesterday I got her to drink some Ensure (1 bottle) and she drank 2 bottles today. She's lost a lot of weight again and is not always coherent again. She's also sleeping a lot again.
I finally spoke to the attending physician late today and he agreed with me that she should be in a hospital. She is being transferred to Robert Wood Johnson Hospital in New Brunswick, NJ tonight. I expect that she will be put into the ICU at least overnight and tomorrow. I would not be surprised if she's in the ICU for longer.
It's 2:38 am and I just got home from the ER at the hospital. I cried all the way home. Not because they found something unexpected, but because they couldn't find anything wrong and were sending her back to the Rehabilitation place.
How can I convince anyone that she needs medical care and they don't provide that type of care there.
She was getting better at Fox Chase and now she's getting worse again.
I'm frustrated and angry and I don't know who to turn to so I can get medical care for her.
I thought I was doing the right thing by getting her to a hospital. Yes, I know shes not like most other patients that come into the emergency room, she's not in pain, she doesn't have any broken bones or wounds, but I still think she needs to be in the hospital. But they're not going to listen to me, since I'm not a doctor. I just know that there's something wrong with her which was getting worse each day.
This has been a hard day for me... and this is a hard email for me to write... and it will be a tough message to read.
I saw Helena this evening back at the rehabilitation facility. I asked her if she had eaten anything during the day and she said "no". I asked if she was hungry and again the answer was "no". I gave her a bottle of Ensure and she did drink it. I left 7 more bottles with the nurses and spoke to the male LPN who is very good about getting Helena to drink the Ensure.
She asked me if this was the end. I told her that we were going to try everything we could to treat her, but that was before I saw the CT report from July 7th that her doctor sent me tonight. That report indicated that the cancer had spread to other organs and bones and the once slow growing tumors in her lungs had started to grow again.
I spoke to her doctor last night (Saturday) and he said that he would initiate the transfer of Helena back to Fox Chase on Monday morning. Even if nothing can be done for her, at least she will be in a place where she will be cared for by nurses who really care.
Unfortunately I don't see any chance of long term survival for Helena anymore. I'm thinking that her survival is going to be measured in weeks or days.
One of positive(?) things that is the result of the liver problems is that she's not in pain. Her doctor explained the reason to me, but I'm not sure exact what he said, so I can't write it here.
On another matter, most of the folks who receive these email messages have read Helena's saga on the web. The main area has her story up until 2000 or 2001, most of the rest can be found in the messages we sent out via email.
I would like to get her story formally published after she is gone to honor her long struggle and the many doctors who helped us over the years. We've gotten many email messages over the year from people who said it gave them inspiration. If anyone has experience in the publishing business I'd like them to contact me. She was an excellent writer, so the main piece probably won't need much editing. The latter message will need more editing. She had intended to write more about the last 4 or 5 years, but every time she started, she ended up having to go into the hospital for another treatment.
BTW, I do intend to file a formal complaint against the facility she has been in since July 11th with the NJ Department of Health on Monday.
I just got a call from the Franklin Care Center that Helena was having trouble breathing this morning and they were going to transport her to Robert Wood Johnson Hospital in New Brunswick. They called 911 to get the ambulance.
I will be taking my laptop with me. If I can find a wireless spot, I will try to send updates.
Helena finally was admitted to Robert Wood Johnson Hospital in New Brunswick, NJ and she got into a room at at about 6:30 pm. She's not in the ICU, but a step down area (1 nurse for 4 beds). They will not move her to Fox Chase unless her breathing stabilizes. When I left her heart rate was 138, blood pressure 147/77. They had ordered a grilled cheese sandwich for her. It did look quite tasty. I told them that if she didn't eat that, she would drink Ensure.
She was resting as comfortably as possible when I left, but she was still gasping for breath occasionally.
She is in room 537. Directions and visiting hours can be found at RWJUH: Visitor's Guide.
For the first time in almost two weeks I am not worrying about the care she is receiving.
Tomorrow is going to be another tough day, since I will try to talk to her about medical directives like DNR. I know what I would want for her, but I need to know what she wants or doesn't want.
I spoke with her doctor this evening about how long I can expect her to survive. He confirmed my gut feel that were talking in terms of weeks or days.
I would suggest that if anyone wants to see her, you should make an effort to do it in the next few days. The sign on the door says one visitor at a time, but the nurse said that they could allow two at a time if nothing is being done. I need to do errands in the morning tomorrow, so I won't get to the hospital until noon or a little later. I will be taking my laptop with me, but I haven't found a wireless area in the hospital yet. If I get close enough to a Rutgers College building, I might be able to tap into their network, unless they've tightened network security in the last few years. :-)
Thanks again for all of your support at this time and though the years.
I will adding a remembrance area to this site in the next few days where everyone will be able to write their thoughts. You will be able to mark them as private or public. I will be able to read all of them, only the ones marked "public" will be able to be seen by everyone.
Helena went into repertory distress last night. She was lucid enough to tell them that she didn't want to be put on a respirator. They were calling me to confirm, which I did.
She is still alive as of now.