Last day at main place

Tuesday, my last day, turned out to be a pretty good day from the point of view of experience related to nursing. I started out doing assorted tasks: making sure gowns, gloves, etc., were in plentiful supply in their various locations. I then moved on to collecting breakfast trays. I went into PT SS's room to get his tray and ended up sitting with him talking (listening to him) for around an hour or so. He talked about his business - he was a furrier. He'd had a factory and had employed a number of people in the past. He'd had a partner, but he'd left the business - he'd been in poor health. Slowly over the years, PT SS had let the business get smaller. Now he was alone and outsourced everything. He kept at it because he enjoyed it so much. He no longer dealt with stores, such as Niemann Marcus, etc., as he had in the past. Now he had personal relationships with individual customers. He particularly liked this since you got immediate feed-back and got paid right away! He talked about the rehab options his daughter (he had two daughters) was investigating for him. He'd require about a week of rehab once he was done with the hospital. He was anticipating perhaps another week in the hospital. His skin had improved visibly in the short time since he'd had the chemo and he expected this to continue to the point of his condition being manageable at home. He did want to go home, of course, as one would, but he was particularly keen to get back to his wife who was missing him very much. She had COPD and was not very mobile. He took care of her. He also said that this (he'd previously been on the rehab floor for 3 weeks prior to the oncology floor) was the longest he'd been away from his wife throughout their 55 year marriage. This was hard on her. Their younger daughter's boyfriend - they lived in the building next door to theirs - was taking good care of her every day during his absence but it wasn't the same as having him with her all the time.

NH came in to give him meds and to talk to him about changing his dressings. She returned after a little while with his pain meds (to facilitate dressing change). Since the summer intern nursing student was assisting another nurse with a task I ended up assisting NH with the dressing change. I gowned, gloved, and masked up. Probably around 70% of his body was covered with medically impregnated yellow bandages. PT SS joked about being a mummy! He took it very well. This process required him to stand up for a long period of time while NH removed the old bandages, slowly and gently. Meanwhile, I started unwrapping the new bandages. These are individually wrapped in foil packets. They're very messy and smelly (sort of carbolic smell); they're approximately 3 x 5 inches). Once she'd removed all the previous day's bandages (now changed once a day, previously were changed twice a day), NH applied bacitracin ointment to the wounded skin and carefully placed one of the new bandages over each area, covering the wounds. Over the bandages she applied white petrolatum ointment. She slowly worked her way over his entire posterior body. Once posterior was complete, PT SS sat on a covered chair. NH then removed the dressings from the legs, arms, etc. and carefully repeated the same routine.
Meanwhile the PCAs had come and changed his bed, including placing a new cover over the sheet (anti-exudate cover, usually used for bone marrow PTs). PT SS carefully placed himself on the bed, seated, and with a little help as we held his feet and helped him move them, he got himself back onto the bed. We put a clean gown on him.
Now all clean, redressed and back in a clean bed, PT SS seemed very happy. He felt there was a distinct improvement; he certainly seemed in far better spirits.
Subsequently, I paid a brief visit to PT K. We talked about his lunch. He wondered if he could eat American Cheese. He has to avoid foods containing tyramine.
A PT's family had bought us pizza, so I had a great, tasty, HOT piece. There were also donuts, but I didn't take one. After lunch I spent the afternoon doing various maintenance tasks, refilling gloves, gowns, etc., then left for the last time at 2.30pm. Perhaps I'll be back on this floor at some point, we'll see.

Monday of my last week at my main place

Monday I spent a while talking with PT K. He seemed down. He explained that he had to rethink his plan. He thought he'd decided not to go for the brain biopsy suggested by his neurosurgeon since he'd understood that it would involve the biopsy, followed by 6 MONTHS of radiation, followed by another 6 months of waiting to see what the result was. He further explained that he'd been told that at best he'd get another 2 years of life. Thus, given the ordeal that the treatment would be along with the waiting for the results, he'd decided that it would not be worth it given how little he stood to gain. However, he'd lately been told that he could possibly have another 5 years and it would only involve 6 WEEKS of radiation. Further considerations were that the kind of tumor he has has a tendency to produce blood clots and there was a 10% risk of life-threatening bleeding during this procedure. He was also concerned as to the potential effect on him as a person, either personality change or some kind of incapacity resulting from the biopsy. His surgeon seemed confident that this would be minimal at most and not something to count against undergoing the procedure. He was pondering all these issues.
He further explained that given the initial description of the procedure's risks, the length of the therapy, and possible outcomes he and his healthcare advocate had decided that this was not the way to go. Now a major rethink was called for. They'd had a conference with the neurosurgeon, his healthcare advocate and PT K himself but not with his oncologist who was on vacation that day (and, apparently, hadn't provided enough notice to allow for a rescheduling). The neurosurgeon also said that there was a time window for doing this procedure (PT K assumed - as did I - that this meant in the next few weeks, and not a decision that could be delayed for months, but not something that had to happen over the next couple of days so, he would have time to meet with his cousins and healthcare advocate and give it due consideration). PT K's cousin had suggested that he talk to his original doctor at the first hospital he was at as to his opinion on the possible negative/positive outcomes of the biopsy procedure. He was nervous that perhaps this would require him to impune the skills and reputation of the surgeon he was currently with (who has done this procedure many, many times and is an expert). He asked my opinion. I said that I didn't think he needed to worry about that since he was not asking about the skills of the surgeon, he would be asking about the procedure in general which, no doubt, is performed in many places around the globe, furthermore, if the doctor did not feel comfortable responding, he didn't have to.  He seemed to decide then that he would ask his first doctor.
The chief point of the biopsy is to find out what kind of tumor it is: apparently it could be one of two (of the three kinds of brain tumor). The location is what makes it particularly problematic - at the pons.
I also visited briefly with PT SS. He'd undergone his chemotherapy around four days prior and did seem improved. Certainly he was in much better spirits so, one assumes, he couldn't be in anything like the discomfort he'd been in before.

Slow day in ER

Usually the RNs etc, have the volunteer take/tube stuff up to the lab or blood bank, not today. That really reduced what I had to do. However, it was a slowish day in general in the ED. There were even a number of empty beds.
Today included:
Male PT, approx 60 yrs with scabies
At least 3 female PTs with ankle sprains (I think they were all wearing flip-flops)
Female PT, approx 25 yrs unconscious then had grand mal seizure on gurney (from ambulance), then back to unconscious state
Deceased elderly male in trauma room - body in bag and tagged, waited for family to arrive. I saw foot end, with wrap.
Family obviously very upset.
Escorted male PT to Detox (Addiction Institute) for admittance.

Things seen

Pemphoid/pemphigus
Ascites - both alcholism related and non-alcoholism related (R/T lupus)
ALL
MDS
Sickle cell crises
Various cancers (brain, breast, intestinal, and others)
Other leukemias
COPD
Asthma
Alcoholic detox
broken foot
child with boils (?)
man infested with bed bugs
kidney stone
diabetics with dehydration
older lady (around 60?) with seizures
post-surgical cardiac PTs
Acute respiratory distress
Acute GI distress
PT reporting melena (no other S/P)
Trauma - car accident (minor, soon discharged)
In trauma room, elderly lady resus'ed and intubated, then placed in bay in ER for admittance upon available bed.
Numerous falls and dehydration PTs (unusually hot summer)
Minor ailments treated: migraine, GERD, stomach ache, amongst others

Charming conversation companion

Fairly busy in the ER today. Usual range of errands, pharmacy, medical records, samples to labs, and so on. I got to spend around a half hour with a lovely little boy whose sister was in the ED and was going to have a procedure. It'd be easier without him there. So, I took him around the ER and showed him the x-ray room and talked about all the stuff. Then we took a walk around the block and we talked about movies and  dinosaurs. He was such a sweet little fellow.
The usual detox guy was back again, asleep and thus completely non-threatening this time. There was one other guy in for detox and a completely drunk couple. The woman in this pair had clearly fallen badly and that's how they'd wound up there. She was on a gurney from an ambulance.
There was an older lady who'd broken her foot and cried out in agony several times while they sorted her out and put a cast on her.

Almost done

I told my main place that I would make next week my last. This feels good to me. I will come back after some months, but probably to a different floor. Given what I can do as a volunteer, I think I've got out of this experience all I can (from the perspective of a nursing student).
PT G was indeed no longer on the floor, which is great. There were a number of new PTs. PT K was still there.
Monday was a pretty uneventful day. I spent the time looking for things to do. I didn't really have any PT who needed particular help or wanted to talk.
Tuesday (yesterday) was somewhat more interesting. PT K seemed subdued, so I asked him how he was. "Not good," he replied. "I just had some bad news." Presumably there were unfortunate test results (he had been off the floor for a while the previous day, for tests one assumes).
He was so grateful to have his meal reheated, but disappointed by the lack of the vanilla ice cream he'd asked for. He had though chocolate would be OK, since the food service lady had offered him that flavour ice cream. There was no ice cream with lunch this day, but I found him a chocolate pudding. Again, greeted with gratitude. A short while later, I returned to his room. Turns out he's not supposed to eat chocolate since he has to avoid theobromine (something like that, I don't quite remember). He'd been on the phone with his doctor or the nutrionist. He still wasn't clear, but we looked at an information sheet he had and clearly, chocolate is a no-no.
There was a new PT. I immediately recognised a bulbous lesion on his leg - a pemphoid blister. He told me all about his condition. He'd had it for two years, managed with prednisone and cyprofloxin. Eventually his dermatologist decided that they should try and wean him off these two drugs (powerful and one a steriod). Gradually by steps they did so, finally it flared up again. Reestablishing the previous regimen didn't seem to work. He was here to try a chemo treatment (hence his presence on our floor). He was desperate. While this is not a life-threatening condition, it is incapacitating due to the pain and discomfort. E.g., he is unable/unwilling to go the "john" (as he called it) due to the pain from the sores/blisters on his behind. He is not constipated, just unwilling to endure the pain from the skin.

On another note, yesterday and the day prior there were parties! One for birthday people on the floor, the other was a baby shower for a pharmacist. This Friday I'll try and attend the baby shower for the person on our floor.

A farewell, and hopefully not au revoir

I mean that in the nicest way. PT G believed her docs and social worker would be coming up with a rehab and care plan which would see her out of the hospital and back home. She really wanted to go home, enough time in the hospital (I think it must be 3 weeks or so).

Today she was not "woofy" at all. Apparently one of the things her docs have been working on is figuring out which of her meds were having which side effects: woofiness (spacey and dozy) was one, another was dry mouth, and some other things. She reported that the docs had said that this could be due to one particular med she was taking. Her roommate, PT T, went home today and she, PT G, and I sat and chatted for a while. She works in another hospital nearby. She talked about how long people have to wait in ERs in NYC (possibly elsewhere in the US?). She said this seemed so bizarre to her, that part of that wait seems to be because docs here like to use all kinds of diagnostic tools (MRIs, CTs, etc) all of which require waits for results, whereas in Russia, they tend to focus on first aid and treatment of what can be treated ASAP and thus people are in and out fast. I was saying that perhaps it's due to the way people use ERs here in the US, but didn't get to elaborate on how this differed from A & E use in the UK.

The asthma PT I encountered on Monday was also going back home today. She was in much better shape and in very good spirits. She talked about where she lives - nearby in assisted accommodation, in a studio in a place where there's dining rooms and they do everything for you but you also have a kitchen. She seemed very happy with it, her only regret being that no pets are allowed since she'd love to have a dog.

PT M, who had been almost completely out of it yesterday was more with it today, but still was not eating. He complained of a painful throat.

PT K was still there and he talked to me about politicians and how he was a-political since corruption seemed unavoidable. Later in the day his wife (I assume) came to visit, which was nice to see.

At the end of my shift, I went to say goodbye to PT G. She said some very nice things, expressing her appreciation of my keeping her company and helping her out. She shook my hands in farewell and, of course, appropriately said "I hope I never see you again", which I echoed (unless, she said, it was by chance on the street, but NOT in the hospital!).

Bugs and nuts in the ER

The ER yesterday was fairly busy but not nuts like last week.

A elderly, but ambulatory guy came in who'd acquired bedbugs from a piece of furniture from a pal which infested his house. He'd been placed in a contact room, which then was off-limits until some clean-up squad could come and de-infest the room.

I fetched medical records a couple of times. Various unglamorous tasks - more cups, sheets for PTs, passing along information to the charge nurse (a tad fierce) from a resident (probably intimidated). Taking samples up to the Lab or sending them up by tube. Getting food for PTs, water.

One elderly lady started out in the trauma room, got stabilized and then ended up in a bed in the ER. She'd have made her way to the ICU by now, but one wonders how many hours she spent in the ER.

One elderly lady was in great pain and clearly suffering some acute intestinal distress - she had smelly diarrhea and seemed to get catheterized (not very comfortable if you're not already anesthetized or out of it in some other way). She moaned in agony periodically.

A young man, early to mid 20s, brought his mum in for detox. Elderly lady, utterly tanked, but aside from that respectable seeming and well kept. The same drunk from last week also turned up for detox; he was better behaved this time. No stroppy attempts at violent threats this day. There was another man in the other contact room who was clearly out of his tree on something. He was moving all around on the bed, and pulling at something on his clothes that wasn't there, gesturing and muttering. He ended up sleeping with his head down the "wrong" end. Looked uncomfortable but at this point he was out cold and wouldn't have noticed.

Woofy and Bad Culture Results

This Monday I did the usual mixed bag of tasks. Monday seemed like a busy day. There were several new admissions, including one guy who was very tearful (PT H). He was so very hungry but was NPO prior to some procedure.

One PCA who'd been away for three weeks on vacation was back. She's very bubbly and friendly so she was missed. Another PCA was collecting for a baby shower gift for the PG PCA and asked me to sign the card and if I wanted to contribute. I did. I'm not sure if I'll make the party since I may be home with the kids.

The MDS lady, PT G, was still there, and didn't seem hopeful about leaving the next day. She seemed somewhat out of it again ("woofy" as she calls it). I sat with her and she talked. This time she told me a lot about her family - the social worker had made her get in touch with her brother, despite MDS lady's protestations. She gets along fine with her brother, but he's not nearby and is not someone who will be able to deal with affairs in her house and so forth.

Her family - her brother married three times, first time to a girl he got PG in high school. They had four children. He then married another woman, but they were not together very long. He married another woman, with whom he had a son who is a good kid now in the navy (having completed college). They separated because he longed to move to Las Vegas and stop having to deal with NE winters. She wanted to stay put, near her family. Conveniently, she was diagnosed with cancer and died shortly after, thus ending the marriage. PT G (MDS lady) had got along fine with all of these women, and children. The problem was her mother, who sounded like a difficult woman. She'd never liked wife no. 1 and had also not engaged with those grandchildren. The father just went along with this, despite of whatever opinion or feelings he may have had. The mother died of lung cancer around 10 years or so, which, said PT G, was fortunate since no one would have wanted to take care of her if she'd died after the father. The father also died about 3 years later. The upshot is, PT G is relying on her friend and her husband for assistance. However, there'll be a problem soon since her friend has to have surgery which will limit her movements.

The social worker is working with PT G to find a rehab facility near her home. Seems like the doctors and the SW are beginning to come up with a plan for ongoing care.

I also visited with PT K, who had gone home. He'd returned early that morning having spent the previous day on a different floor and prior to that 17 hours in the ER. He'd been at his rehab place when they got a call with blood culture results: one was positive for some kind of infection. He was ambivalent about going to the ER about this, since, in his experience this would be due to his catheter and would probably go away with no serious consequences. He was thus annoyed with himself since he allowed himself to be "brow-beaten" into going. Since he wasn't acute or a trauma PT, he'd spent 17 hours in the ER waiting for a room, then he was on the wrong floor (orthopedic) where they didn't understand his meds. Finally he gets to the oncho floor, by which time he learns that the result was erroneous and due to contamination. He was due for some more chemo by now, so he was staying put for a few days.

It seemed like the PT in the first room - nearest the station and always occupied by the most sick/needy PT is now occupied by a youngish man who is dying of cancer. He was very nice, but from time to time moans in pain when sitting on his commode.

I also helped PT G's roommate, a Russian Jew, PT T. She has her own food. She's kosher, but doesn't want the hospital food (they supply kosher food). She has bowls of soup one of which I heat up for her.

Back in the first room I met PT G, there's a sweet lady next to the window having breathing treatment. I joke with her that it looks like she's smoking something sketchy. She's in good spirits.

I go into a contact room to see PT M who is not A and O x3 - he knows who he is but not where or when. He's having trouble eating. I try to get him to eat his breakfast, but he won't.

I'm not able to say goodbye to PT G before I leave since I have to leave the room when her doctor comes.

Insane ER

This afternoon I did my weekly 5-hour stint in the ER. Last week it was pretty quiet and I was able to take a break. Not today. The place was nuts. Didn't stop for the entire 5 hours. There were so many PTs they had to make all the visitors leave: over 70. They ran out of gurneys, rooms, wheelchairs. Lots of people dehydrated, a guy with a kidney stone, people with diarrhea, vomiting (lots of smells), infected abscess on one guy's neck, a couple of people in a car crash in a taxi with relatively minor trauma, a "cooperative" felon who got un-handcuffed so he could be treated more easily, some falls, respiratory/cardiac distress, habitual drunk in for detox who needed to be reasoned with, one lady very distressed who wanted to leave and needed "handling" and so much more!

So many EMT teams at the ambulance entry it was totally crowded. I talked to people, brought food trays, fetched/alerted nurses to their PTs' needs, took a Rx to the pharmacy and brought the drugs back, took another order to the blood bank for platelets and brought them back, took lots of samples/sent lots of samples to the blood bank and the patho lab. A good day, in fact for me, but not for those in the ER. There were people who were there when I arrived and were still there when I left.

Day before yesterday in main place: saw the MDS lady again (PT G), but doing much better and much happier. Felt like she finally had a doctor who understood what was going on and was on top of things. She got two lots of platelets, but first went in so slow her nurse had to move the IV, which she was not wild about. But new one was much faster. I also saw the ALL (PT R) lady who was also much better.

Eye-patch guy (PT K) had a new room mate, with a raspy voice (PT D). Seemed like a relatively young guy. He seemed pleasant. I reheated Mr Eye-patch's lunch and went around bringing various PTs ice water.

Yesterday spent more time with MDS lady, but only after I'd done a bunch of things in the morning. She's carefully keeping track of all her meds and therapy in notebooks and also trying to keep track of bills that are coming due. I'd already found a couple of customer service phone numbers for her to call to pay bills over the phone. She agreed that she really did need to have someone - her friend, go to her house and get mail and other things. Unfortunately, the new IV line from yesterday proved short-lived since it was slow today. Her nurse (same as yesterday, and a good one) put in a new line on her other arm. Much faster. This day this PT had to get a transfusion (can take up to 4 hours), so she couldn't have a slow line. I went down to the gift shop, having stayed later than usual, to try and find some stationary supplies for her. I could only find the small notebook. If she'd mentioned it earlier I'd have been able to go to Duane Reade and get everything, but that would have taken too long at this point.

I visited with ALL lady who, again, was doing much better. In the morning, somehow due to a misunderstanding, she'd not had breakfast so I mentioned this to the PCAs, one of whom constructed a breakfast for her from what was left. She was doing so much better and was in such good spirits. She said some very nice things to me, which, of course made me feel good. It's nice to be acknowledged. At the end of my shift I went to say good bye to her; she explained that she expected to go home soon. So, I said, I hope I don't see you next week! MDS lady expects to be here at least next Monday.

This day the MDS lady had a new room-mate, who was very aggressive and offensive. This is the third or fourth time I've seen this on this floor (only once in my other place). But, this is a normal reaction to the fear and worry of cancer. Later in the day, her doctor came to talk to her and discussed this issue and the PT became tearful and sad. It surely must be terrifying to find out you have cancer in your brain. He talked to her about ways of dealing with this. From the time line discussed, it seems like she'll still be there next week. Perhaps she'll be calmer and I'll actually be able to talk to her.

The nurse who had previously shown me procedures this day showed me a blood draw and talked me through that. All very interesting. I had a longish chat with another nurse who had not realised I was a nursing student. She told me about the summer internship program and scholarship and urged me to apply for them or at least look into those when the time comes. She'd had both and were a big help.

I saw Mr Eye-patch and his room mate a few times over the day and got his room mate tea supplies a couple of times. Another nice lady I'd spoken with a couple of times got to go home today and I talked with her while she got ready to leave. She was very pleasant (the whole time she was there) and was clearly very happy to be going home.

ED switch - first day

The next day I was back at my one-day-a-week place. This time I started in the ED and spent an hour or so with a very helpful long-term volunteer who took me around and gave me a quick and dirty introduction to what I'd be doing in the ER. She'd been volunteering there and at the other site for many years and also acted as an interpreter for Polish and Hebrew. There's a main room ER, a "fast track" for problems easy and prompt to remedy, and a pediatric ER. The RN trainer also told me that it's one of the few places in the country with psychiatric ER and she told me that there are psych patients in other ERs around the place waiting for appointments since few other hospitals are set up to deal with this kind of emergency. In other words, if you're going to suddenly go loopy, do so near this place! This RN then spent some time with me introducing me to various people, to the colour teams and how they work. After that, I was by myself. I spent the time circulating around the various parts of the ED, looking for stuff to do. Suddenly I saw our priest and stopped to talk with him: he was there since his elderly mother had fallen and broken her hip. Some time later, I went to speak with the trainer RN, to whom I mentioned that I'd seen our priest. She was amused since she'd seen a priest sitting outside a room and had thought, that doesn't look good. It's OK, I said, her son just happens to be a priest, no one is dying!

My duties in the ER include, assisting new intakes and orienting them, fetching food trays for those who need them (whichever is there, the name is irrelevant - this I took on board when I decided to give the only "real" lunch to the HIV +, dehydrated man living in an SRO who clearly needed it way more than the rather overweight woman whose name was actually on the tray, and a choice subsequently lauded by the volunteer trainer RN). I spent the time either actually taking things to the lab or blood bank, or putting them in the containers and sending them by "tube". I walked around asking for jobs in the various departments, fetching food trays, offering and fetching ice water, or just chatting with people. I almost got to see a lumbar puncture, but the patient decided not to have one - he'd previously had that experience and, upon discussion with the doctor, it seemed highly unlikely that it would have been very helpful since he almost certainly did not have the meningitis the LP would have found. He had shingles on his head and, while the doctor stated that he was pretty sure he didn't have anything else at this point, the LP would completely rule it out.

In the end, I did more than my 5 hours. Much more interesting and "happening" than patient rounding.

This week I reacquainted myself with two patients I'd talked to last week, patient PT G who has MDS and PT S who has ALL. PT G (GR) looked much better since when I'd encountered her last week she'd received some pain meds that had knocked her for six. She was still not in great shape since she remained in pain, though, as she suggested, it might just have been from spending so much time lying in bed and getting stiff. Her problem was that it seemed to be taking some time to figure out a pain relief regimen (not helped by her not getting any meds on the Saturday). The medical staff also, she reported, seemed to think she was "malingering" and didn't want to go home. This seemed hard to believe, since she has a perfectly fine home to go to although she was going to have to rethink her lifestyle, as I previously mentioned.

Patient S seemed in worse shape. She was experiencing asthma-like symptoms and seemed in more distress. She didn't want me to stick around so I moved along. Another patient (PT K) I had previously talked too and assisted told me that he wanted bottled water since someone had told him that the pipes were not clean and were full of "bugs". He insisted a member of staff had told him about this. I asked the acting clinical nurse manager and another nurse who happened to be in the conference room having lunch at the time. They were both highly amused and had no idea who would have told him such a thing. There is bottled water for patients with especially challenged immune systems who feel more comfortable drinking that water rather than that from the tap, but we all know that the water from the tap is no less clean. This patient often wears an eye patch over his left eye due to a brain tumor that causes some problems with that eye.

In another room I encountered a patient who was not happy with his meal. He wanted a sandwich instead. He also wanted me to reheat his coffee and bring him various things. I asked his nurse for the day if he could have a sandwich instead of his meal. What I heard in response was very interesting: he'd had a sandwich earlier (and on another occasion prior to that). He'd not eaten it all and hadn't kept what he hadn't eaten. He'd been homeless for six days prior to being in the hospital. One assumes the novelty of some kind of control over his circumstances had induced the apparent "fussiness".

Thursday

Thursday I returned to my other place, again with some degree of trepidation. It turned out to be a pretty good day however. I had three long conversations with patients who seemed to need someone to talk too. One was thankful she woke up in the morning and could get up and walk around. At first I thought this a daily mantra of hers, but it was in fact a sincerely realistic comment since she'd been very sick the previous week! She was very happy and eating well. She was a dialysis patient, part of a program she attended regularly but the heat and humidity had got the better of her and caused her hospital stay.

In another room was someone experiencing a sickle-cell crisis. She explained that her test results indicated an infection which was assumed to be at the site of her port. Apparently, most people are able to maintain one in one site for a few years before it needs to be relocated. Since this patient is very pain-sensitive, this procedure involves general anesthesia (usually it would require only local anesthesia). Since she'd had to undergo removal and insertion of her port eight times in far fewer years, she's unwilling to accept the apparently automatic assumption that it's her port since she doesn't feel this is the location of the problem. This is her conclusion, given that when in the past this was the location of such an infection she experienced local discomfort and obvious symptoms in this area. So, it seemed understandable that she would be reluctant to immediately go along with the doctors' desire to remove the port and put her through the trauma and hassle of inserting another.

She also told me that she smoked, she was also rather overweight and clearly had not taken great care of her teeth. This struck me as an interesting contrast to her fellow SC lady I had previously encountered in my other place. Given my attitude to health - being an informed consumer and trying to eat healthily and take regular exercise, I would think that if I were afflicted with some kind of long-term, genetic condition, I would take extra good care of myself. The lady at my main place didn't smoke, had good teeth, and was not overweight and seemed to take care of herself. She also seemed better educated, lived by herself and had a full time job; all of these imply a degree of self responsibility. The other lady, possibly even older than the first one, clearly wasn't taking good care of herself and lived with her mother who often interacted with the healthcare providers on behalf of her daughter.

Once I'd done my hours for the day I returned to the volunteer office to gather my things and head out. My departure was delayed since I received some good news; if I was still interested, I could switch to the ED. Absolutely I was still interested. Thus I ended up hanging around for a while until the ID office reopened after lunch since I'd need a new ID (enabling me to get into the ED at the weekend via the emergency entrance). I also got to meet the RN in the ED responsible for training volunteers.

Tuesday

Tuesday was the only day I went in to my main place this week. I spent a lot of time sitting with a couple of patients. These two have conditions - permanent and genetic, that require treatment similar to that undergone by cancer patients, though they are not cancer. Thus these two end up on our floor. One is young and has dealt with her problem on and off throughout her life (PT A). Currently, she's experiencing a particularly long "crisis" proving stubborn to treatment. Otherwise, she's in fairly good shape. Among her problems is pain in her joints just one of the many possible complications from her condition. She's very personable and chatty, clearly animated and intelligent, and thus lonely and bored. She's part of a large family who visit frequently, but even with that, in a hospital one always ends up spending large chunks of time lacking in company. She asked for drawing and coloring materials, which I got from one of the social workers. We didn't get around to actually producing any art, instead we talked about stuff, family, life. What she did, where she lived, her family. My family, where we've lived. She was somewhat in pain, but totally ambulatory - in so far as one can be with an IV. Despite her discomfort and uncertainty as to how long this crisis would last, she was in very good spirits.

Now I know more about her condition, and the long-term prognosis, primarily a severely shortened life-span, her cheerful disposition is a lesson indeed. As is her determination to complete her Bachelors, progress on which has been curtailed by dealing with her condition. She talked about where she'd wanted to study, the same place her mother studied. This didn't work out, but she did start at a good, local institution and made progress toward her degree. She really wants to get back to it and complete it.

Her fellow-floormate is an older lady who, while burdened with a similarly unfortunate and genetically predetermined burden it is one that did not afflict her until much later in life (PT G). She's only experienced it for a year or so, but it's made rapid progress. She's in the position of having to come to terms with possibly having to rethink her entire life-style. Until fairly recently she was able to go about her daily life - a leisurely retired existence, while making some accommodations to this newly present discomfort in her body. However, her current predicament suggests that this may no longer be the case. She has already handed her beloved cat over to her best friend; this is very sad, since he was great company for her. She was no longer able to take care of him, since she can't open cans or shop like she used to. Her arms and hands are somewhat weak - I open packages for her on her meal tray, and while she was able to feed herself and cut up her own food, her dining was slow. She was talking at length at the same time, to be fair, and if I'd not been there for her to talk to, she'd have been somewhat quicker, though I doubt much. I think her weakness is largely due to not having eaten properly for a while and not being able to sleep. Her condition means she's at severe danger from bruising and bleeding from the slightest knock, and even spontaneously in fact. With this in your life it means you've got to be really careful about everything you do. Anything could cause a horrendous health problem. The poor lady had also just had eye surgery that will take several weeks to resolve itself. Then she'll see better; in the meantime though, it means she can't see out of one eye. This was also impacting on her eating speed since the bad eye was on the same side as her tray table where her lunch was. She didn't want me to move the table since that'd be on the wrong side for her right hand.

She had been in pain in her back and down both legs. She'd been trying to deal with it at home, but her OTC options are limited due to anything aspirin-related being off the list. This had been going on for a couple of days or so, during which she'd had a minor fall on one knee. She'd gone to her local ER and was sent home with pain-killers, well, a prescription for some at any rate, but one which she couldn't fill due to her pain and condition. Meanwhile, her injured knee had produced an alarming amount of bruising down the bottom half of that leg, with a "slipper" of bruising along the bottom of her foot, just above the sole. This looked rather alarming to me when I first encountered her, but then she explained why she was there and that it really had nothing to do with this dramatic bruising.

She told me what she'd been doing in her life. She'd worked in finance, and continued to work full-time to the last possible moment she could until retirement. Thus she ensured receipt of the best pension possible. She'd been retired for around a couple of years and had been enjoying pottering around her house with her cat, watching TV, and generally taking it easy. She'd had no grand travel plans and such, as many do when thinking of retirement, which, as she said, has proved fortunate given her current health situation. She'd been part of a drug therapy study from which she was removed when the drugs no longer worked - they'd provided a brief improvement, but this was not to last. She had then been undergoing periodic transfusions, which became more frequent, and were now weekly. And now she was experiencing this current crisis, which was indicating that her condition had exacerbated.

Sickle-cell and MDS: long-term prognosis for either of these is not great.

Another patient I'd been spending some time with, who'd been there for quite a while was not on the floor (PT AH). This lady had been visibly deteriorating and had been recently almost constantly asleep. I asked where she was and was told that she'd passed away Saturday night. This was expected, unlike the fellow who'd died the previous Monday morning. He'd seemed in fairly good shape, given the circumstances.

Around five patients that I've had some contact with, some brief, some lengthy interactions, conversations, have died since I started on this floor. It's proved a wonderful opportunity, prompt perhaps, to ponder various of life's questions but also chiefly one's role in the room with the patient. Constantly one remembers that it's nothing personal for you, that who you are is irrelevant, it's about being available for them. This can mean just being there, as a comforting presence, providing a foil for light, distracting conversation, or a sounding board for life-style readjustment, amongst many other things.

Pride Run

I should mention something about our weekend. Clearly much time was spent packing things in boxes, sorting, throwing things out, but we did some fun stuff too. I ran a race! I participated in the Pride Run on Saturday, finally running with a friend (also moving, but far away). I managed to run the 5 miles non-stop in around 52 minutes. I was very happy with that time, and am now inspired to run further and participate in more races. However, despite that, I've not been able to run since Saturday. Too tired to get up in the morning and get in the pre-breakfast run I was managing until the end of last week. Maybe once we're all moved into the new place and the weather cools off (which it's supposed to do).

Moving house

It's been a while since my last note here. We are in the process of moving home and so I am both tired and distracted. Today I was so tired at my main place, I was almost falling asleep on my feet. There's a heat wave so it's hot at night. I wake at 3 am and take another 1 1/2 hours to get back to sleep. I set my alarm for 5.50 am so I can get up for a run before breakfast. Well, this morning, I just could not get up, I was so tired. I decided I'd be better off getting another hour's sleep.
Anyway, we were expecting "The Man with the Van" to show up today and schlepp our boxed up stuff from our present apartment to our new one nine blocks north. He did not come; he had called Chuck yesterday evening to confirm and Chuck had not got his message or had not called back early enough to constitute confirmation. Well, he'll come tomorrow instead when the Whalens guys come - a minor circus, but what choice do we have.
To get back to the main point. Today I had a great day in some ways. One of the two nurses on my floor who suggested my "shadowing" them was in today. So I got to see some interesting procedures. This nurse is great: she tells me if she has something "interesting" to do and then takes me through it step by step explaining what she's doing (Nurse C). God love her for her patience. I watched her (and vaguely helped) redoing a Foley catheter and then with a new IV insertion. With the Foley, I also saw something that, without care, would head for a pressure sore. This lady seems to understand the need to keep off it and instead lie on her side; hopefully we'll avoid her neighbor's situation.
Her neighbor I have previously mentioned. She's visibly deteriorated since I started (PT AH). She sleeps constantly now but will briefly wake if you talk to her. I spoke to her on a couple of occasions today and gently rubbed her arm. She likes that. It puts a smile on her face. I spoke to her briefly. She's so clearly so sick. She's not eating really and thus is very malnourished. She has pressure sores at her sacrum but she won't be in any position other than on her back. It's my understanding that she was a very VERY difficult person before, but her inexorable slide toward the beyond has rendered her passive and calm.
Last week, I would pop in and see how she was, I also tried to render some order to her tray table. She was looking for something and in the process of helping her find whatever it was she was after I noticed various belongings on the window sill: a letter produced by her lawyer for a stay of eviction on her apartment, glasses, handbag, expensive make-up, lots of Sharpie markers in assorted colors, a week-old newspaper... random trappings of a faded existence. It was all together a glimpse into a life. There is quite an accumulation of stuff around her on her table, the window sill, a pile on a chair, clearly she's been here for some time. It's astonishing how quickly a person can go downhill. When I first met her, she was talkative (and irritably demanding), could read the paper and would eat solid food. Last week I got her to talk for about an hour about herself. Now she is asleep constantly but will rouse briefly when questioned. She is wasting away.

Meanwhile, I learned yesterday that a nice man I'd spent some time with last week passed away early that morning. He didn't seem to be on the verge of death so that was a surprise. His room was being cleaned; there was a certain very particular smell. Not a pleasant job, but one that must happen on this floor with some regularity. Three people died last week (two of whom I'd actually spoken to or spent time with), no doubt there'll be more this week.

This is my last day for this week at the main place. Today I started out sitting with another patient that I've encountered a few times already. This lady is not well at all and has visibly deteriorated since I started (PT AH). I am told she is dying. She has periods of lucidity that appear like clouds clearing in an overcast sky. Much of the time she is very confused. Since she's confused, and, probably, lonely, she tends to call for the nurse repeatedly having forgotten that she did receive her medications or that she did get her breakfast (which she doesn't usually eat anyway). She will frequently get an idea fixed in her head that someone significant is coming to visit, such as her doctor, which requires "order" around her bed. She is summoning help to tidy her table, her stuff on the window sill, the floor. Of course, there is no one coming. She does not understand that the nurses or myself, nor indeed, the PCAs cannot mop the floor, that that is housekeeping's job for which they have all the equipment and products, not us.

I spent a little more than an hour with her this morning. I got her talking about what she used to do, where she lived. She'd been conservatory trained as a pianist and singer. She used to sing Schubert Liede and similar material, but as a professional she'd sung soul and all kinds of genres. She had an ex-husband, a jewelry designer specializing in pearls and mother-0f-pearl. I joked that she must have lots of pearls and she assured me she did. We then spent some time trying to find a particular watch she had, a famous name. I could not find it, despite rummaging through the drawers in her bedside cabinets, in the tray table, and on the window sill. She also asked me about cars. I said I didn't have one. She asked me, "What's the most famous car you have?". I threw out a few different kinds. Finally, she told me Mercedes-Benz. That was the car she had. She hadn't had one for a long time, then, finally she got one: a Mercedes-Benz 320. A silver one. She seemed extremely proud of it. She then invited me for a drive, assuring me that she "wasn't a Lesbian" but that she'd gladly go out one afternoon. I thanked her and said that it sounded lovely.

We then had a long talk about her phone, which had stopped working (presumably because it had not been paid for). She asked if I had a phone to which I replied that I did, but that I didn't have it with me. Then she wanted to give me her phone number: after I'd found her MetroPCS phone on her tray table and she'd explained that that did not work anymore either. I said, "Well, you could give me your number but the only phone you have that works is this one [the one on her bedside table], and I'm right here! So, it'd be a little silly for me to call you." She agreed, laughing at how everyone would think this terribly funny.

So, we talked a little more, while I tidied her tray table somewhat, throwing out various things, an opened pudding, tissues, packets of pepper, salt, that will never be used. "Finally, order!" she stated. Then I sat with her again. From time to time I put my hand on her arm, gently moving it back and forth. "That feels so good." I was told. Her skin seemed so dry, inspite of the fact that, I'm sure, the PCAs or the nurse rub lotion on it. This is a problem for skin stretched out with the swelling of edema. It all becomes so fragile.

While I was there her nurse for the day came to give her some medications. One really upset her stomach, sort of acid upset not nausea. It took a while for it to start feeling better.

Previously I've been in this room, with this patient and have noticed the trappings, such as they are, of an existence. A letter from a lawyer, notes to staff she'd written herself when she was in a better state than she is now. A newspaper or two. (When I came in to start with, she started asking me about purchasing a paper with some elaborate story about some fundraising effort or something about a building collapsing - something knitted together in her subconscious confounding assorted memories compiled in such a way as to make no real sense).

It is truly interesting and, indeed a profound privilege, to have this glimpse into an existence. Clearly this lady had been stylish and of "good taste" at some point. She has Mont Blanc pens, Dior make-up, her eyebrows tatooed (or pencilled in? I cannot tell), her nails done. A lawyer who produces stays of eviction notices. A mouse for a computer that was in her bag - which I stumbled upon while trying to find that "famous" watch (R & R), another thing she'd wanted me to find.

She told me where she lived. I asked if she had children and she said that she'd been too busy, that there was already so much dealing with herself that they'd not had any. That there was too much sadness in the world. Then, seeming to apologize almost, she explained that usually she is a positive person that she didn't usually dwell on such negativity. I suggested that wasn't there also a lot of good things in the world. Despite agreeing, negativity seemed to have it.

For some reason I had to leave. I don't recall why. I looked in on her later in the day: she was either asleep or gazing at the window, or her nurse was dealing with her. I didn't have the chance to sit with her again. Probably I'll see her next week and ask her more about her career in music, at least, I hope I get to.

Yesterday was a significant day in some ways. Today was a slow day; I had to hustle for things to do. However, I did get to have a conversation with the lady next door to the lady I was writing about before. Fortunately, the lady I wrote about before did go home with her husband which is fabulous. So much nicer to be at home than in the hospital. I had overheard a conversation between her neighbor and a nurse practitioner (NP) regarding some test results. The news had not been good and now this woman was faced with a choice of undergoing arduous therapy one more time or not. Clearly, since they had left the choice to her they - the medics - held out little hope for any therapeutic value for it. Today, she'd pulled her curtain all the way across, obviously indicating a need for privacy. I did get to have a conversation with her. She seemed to be trying to keep her spirits up; I did get the impression she had decided not to go through more, probably unproductive, harsh therapy. She has several people visiting her throughout the day and so it seems like she has lots of support. That, at least, is one good thing.

I also had a really interesting and useful conversation with one of the nurses (Nurse T). She told me that after school you really need to work in a hospital for a year or so, to get that experience, since it's hospital work that's always your back up. She'd worked in a variety of places and is making her way back into hospital work. She mentioned friends of hers who had not had that hospital experience and who were now having trouble getting work.

Yesterday I spent pretty much all the time sitting with the lady I talked about before (PT L). She was scheduled to go home and so spending the time with her seemed appropriate. We briefly talked about how her weekend had been, that her husband had visited with her, but that she hadn't been so good. Then I asked her how long she'd been sick. She told me since when, for several months. Then I asked what she'd done before she was sick. She told me. Then I asked if she'd like to see photos of my children and she indicated that she would. I got my iPod out of my pocket and found some pictures to share with her. She lit up. I told her a little about them, related to the pictures - about my daughter in ballet class, and how she's such a girlie girl ("She's so CUTE!" she kept saying, with a smile on her face) and then about my son and cub scouts, how much he loves that. There was one picture of him, in his full uniform, with a very serious expression on his face. There were also a few pictures of him in his suit (first communion, she particularly liked that, how proud he looked) or in his vest. She noticed how he liked to dress up. It took her away from her illness for a while.

I had been unsure about sharing such things, but clearly it had been the right thing to do. She was so much looking forward to going home. We talked about that; about how much nicer it is to be with your own things, and to sleep in your own bed. In my mind, I could certainly relate to those aspects of her predicament, but did not mention this. I'm so glad I read one of the books I had rented from Chegg for one of my classes, since here I get to actually implement some of the points there. In normal conversation one is always tempted to bring up similar examples from one's own life in response to comments from whomsoever one is in conversation with. In my current role in this place, as the book reminds me, you cannot do that. It is not about you it is all about the person you are being with; they don't need to know about your 36 hour labor, or about living in a sublet and with someone else's stuff, or about the trauma of transatlantic moves, or that time your kid went missing, but briefly, and it was dark and you were terrified. No, now your job is to listen and acknowledge and certainly one should empathize (heaven knows that whatever experiences you have had in your life facilitate that but must remain unmentioned).

It truly is most profound and wonderful, nay privileged, to be able to share with someone who is having to face something - which we all ultimately face, of course, but which few of us are actually called upon to face quite so precipitously.

Will death become her?

I started this blog for myself, in order to express my feelings about my experiences where I am volunteering this summer. Three days I am at a place where there are some extremely sick people, including some people who are dying. I've never been near anyone who was that sick before. It has prompted me to think about nursing, the role of the nurse, the role of anyone who works in such a setting. It really makes you think about the importance, significance of any task, no matter how mundane, one performs in the presence of such a person. It may sound, I don't know, corny, pretentious, whatever... it's hard to express since I myself am not a profoundly spiritual person.

I walked into a room, introduced myself, "My name is ..., I'm a volunteer, is there anything I can help you with, anything I can do?" and the response was "Can you sit with me?". No one had ever asked that before. So, I asked if she, PT L, wanted to talk or just have me sit. She said she didn't want to talk. I asked if I could get a book and was told that was fine. So, I sat with her, and read.

I have to admit, I find it hard to sit still, especially when I have the opportunity to try and see new things in the place I'm at right now. But I sat until she fell asleep. Then I got up and helped the PCAs in various ways, then took a brief lunch break. Came back and sat with her some more. Then, when I had some down time over the next day or so, I sat with her. We talked a little, but mostly I sat and read, just being nearby. I knew what sort of issue she had due to the nature of the floor, but not specifically. Then, I learned that she is dying and from what. This obviously led me to totally reevaluate the significance of my sitting there with her. She's not visited in the daytime (at least, I have not seen anyone visit) since she has no children and her husband is at work. He visits every evening after work.

She doesn't want to be on her own. Now I realize that perhaps it's because she doesn't want to die by herself. I'm imagining that perhaps she's afraid she'll die and no one will realize for several minutes; or perhaps, it's just the process of dying that she fears. All perfectly reasonable, as far as I'm concerned. Also, there are other things that prompt major rethinks (clearly I have had my head in a bucket for years), such as the visit from the priest and taking communion from him and how happy that made her, even if for just a few minutes. Just having the priest there in the room seemed to lighten her aura, her mood immeasurably. I always say when I am leaving and when I will be back. This seems only fair. I was lost for words when she said in response to my telling her that I'd be there for another hour or so, "I guess I have to cherish every moment I have with you then". I had no idea what to say. So, I said nothing. I always say goodbye when I am leaving and always say when I will be back. I hope she's there when I go back next week.

I am certainly thankful for my lovely weekend, filled with a birthday party for a friend's child, running in the park, going for a swim, eating meals with my family, which includes children (thankfully, despite the various frustrations that includes), and sleeping in my own bed, next to my husband.

I almost didn't go in today, dreading the thought of pacing the floor looking for things to do. It was indeed a slow day, but I had a couple of good experiences which made me feel like it was worth my while to go in. One man chatted for a while and gratefully took one of the free papers I'd grabbed armfuls of on my way in. On another floor, one patient's bed had completely stopped working and I grabbed a NA who fixed it. She was grateful for my telling her. Most of the day I was going from room to room, as usual, introducing myself and offering papers and assistance. Patients rarely actually ask for any real assistance, but on the rare occasions that they do, they are so happy for help. I wasn't able to pass on all the papers I'd grabbed this morning, but a number of patients did take some so it was worth grabbing them. Some patients don't have their glasses with them or they have equilibrium problems or, as with one poor fellow today, acute headaches which prevent them from reading.

I'm also learning more about the trade from my occasional chats with nurses. For example, some facilities have fixed shift days, at others your days are different every week. The bedside nurses all do 12 hour shifts. They do three days a week for three weeks, then one week of four days. That way they get to 40 hours a week. The PCAs seem to do 5 days of 7.5 hours. The BA and the clinical manager (RN in charge of managing the whole floor) work M-F, regular hours and they are on salary, not hours.

What have I done so far? So many different tasks, roles: assisting PCAs, RNs, sitting with patients, prowling the floor for things to do. I just want to keep moving, looking for things to do.

The team on the floor are terrific. They all seem to get along so well and work well together. Fortunately, they have welcomed me into the team and somehow I am managing to integrate my abilities into this team. This is such a privilege and a wonderful experience.

I am writing this just before I head off to work where I am once a week. This experience isn't working out so well. It seems like they are not clear on what I can and can't do and I have a hard time finding stuff to do for five hours. Thus, I am not looking forward to this so much.

More later...