My Friend Gretchen

I moved back to my hometown in late 2002, and left my friends of 17 years back in Texas. I got a nursing (RN) job fairly quickly, but then the dysautonomia and seizures made it impossible for me to continue working, even after finding a ‘desk job’ as an RN. I passed out too often to be employable. SO, I was at home. People here don’t keep in touch with ‘throw away’ co-workers, so I didn’t really have friends. There was nobody to list on any ‘who to call’ paperwork, except for my dad. So I was at home pretty much all the time. I had some really nice neighbors. ‘L’ lived directly across the parking lot from me, and Gretchen, and her daughther ‘E’ lived upstairs from ‘L’.  I became friends with ‘L’ first- mostly since I saw her the most, though I saw Gretchen periodically, and ‘E’ when she was home from college.  ‘L’ eventually moved to a condo, and Gretchen moved ‘L”s apartment downstairs.

For a while, we saw each other in the parking lot, and also got used to each other’s routines. She knew when my vertical blinds had been closed too much, and I knew when she was grading papers at her dining room table. I later found out that when she thought I hadn’t been seen for ‘too long’ she’d call the apartment complex office to see if they’d heard anything- to be sure I was OK.  I spent a lot of time in the hospital for sometimes weeks at a time- so she’d check up on me. She’d see my dad checking in on my dog (Mandy), and since they knew someone in common, they’d chat.  Gretchen taught 4th grade for many years in a neighboring school district.  Eventually, we talked more. I’d see when her grandson (first grandchild) was brought to see her when he was tiny, and other times when her daughters (‘A’ – the baby’s mom, and ‘E’, the college student) visited.  Being on disability, and home the vast majority of the time, afforded me a lot of time to see who was coming and going.  We always talked when we saw each other, but it was more ‘parking lot neighbors’ kind of stuff.

I forget which one of us had a knee replacement first, but that gave us something in common. We’d commiserate over the rehab process.  Then Gretchen started having other health issues, and also had to go on disability.  I understood what it was like to have a profession taken awayIt’s not the same as retiring. It’s being robbed of something that is truly loved, and having no way to get it back. It hurts.  I ‘got it’.  We started talking more, and becoming actual friends. If she needed me to go get her car when she’d have to go to the hospital, I was glad to help out.   I don’t consider a friend someone who is paid to be in the same place at the same time (that’s a co-worker- and friendly co-workers are incredibly important, and can become friends). Someone who is paid to provide a service isn’t a friend- though they can be friendly. To me, a friend is someone who shares common interests and is loyal and fun to be around.  Gretchen was a friend.

She decided to move closer to ‘A’ and her son-in-law  in another state, which was really hard, but I was also happy for her. She had a grandson she adored, and a granddaughter on the way. She was so excited.  ‘E’ was doing well in school, and she was so proud of her.  And we still had my unlimited phone plan (I had a landline; she had her cell phone), so keeping in touch wasn’t a problem. It would be different, though.  I could call Gretchen when she lived across the parking lot and ask if she’d eaten yet… her reply was “I’ll get the car.”  And off we’d go in literally less than five minutes.  She’d show me her latest treasures from the Target discount racks, and be so excited. I think she went to Target at least 3-4 times a week; sometimes I’d tag along.  I haven’t been able to go there since she’s been gone…  She called me when she couldn’t get her quilts in a ‘Space Bag’, and we’d fold and shove and vacuum until the thing worked.

Gretchen had had another knee replacement and began having complications. She had fallen, and also had some tendons fall apart and an infection.  She had several more surgeries, and we’d talk daily about something, either in the hospital or in one of the rehab centers (she knew I’d worked in rehab and nursing homes as an RN, so I knew what was acceptable care), as well as during TV shows we both liked.  It was a rough time for her.  She did come back to this town for a month not long after her granddaughter was born, and ‘A’ and her family had taken a trip.  We did a lot of thrift store shopping for the grandkids (we packed the Jeep absolutely full), and had fun just goofing off together.  She had an infection brewing in her leg, and we’d gone to Walgreens…both of us had forgotten our glasses. Fortunately, she could see close up, and I could see distances, so between the two of us, we got some panty liners to put on her leg to sop up the drainage from her leg. It was a bit unconventional, but it worked.  We just laughed about our combined visual deficiencies, and how we made it work 🙂 We always found something to laugh about !

After she had the last surgery, she was in a long-leg cast, but Gretchen wasn’t one to sit around.  She wanted to be mobile ASAP, and didn’t let a wheelchair or cast keep her from moving herself from chair to bed, or wherever she needed to go (like in front of her computer to order stuff for the grandkids and her daughters).   She’d been through a lot after the last knee replacement, and it seemed like things were going well.  She was going to be by herself one weekend morning, and she’d asked me to call her just to see if she was OK- and I had no problem with that; we talked all the time anyway (or she’d e-mail me; I just found a few of her old e-mails that had been saved the other day… kinda freaked me out). 

I called as planned, and got no answer. I knew something was going on- ‘A’s home phone had multiple lines; even if someone was on one line, another would be open. And, they weren’t supposed to be there. Gretchen was supposed to be home alone. Something was wrong.  I tried several more times, and was trying to figure out what to do if I couldn’t get ahold of her.  And then ‘A’ called me. I knew before she told me.  Gretchen had died.  They’d found her on the floor that morning.  Whatever happened had been fast.  She had some other medical issues, so there were very plausible reasons for a sudden death… and it was sudden and unexpected.  It was later found that she’d been on the computer as late as 1:00 a.m. that morning; she was found before 8:00 a.m., or so.  I was stunned.  My friend was gone. My friend’s daughters, son-in-law (who she also adored), and grandkids had lost an amazing part of their family.

Since then,  twin granddaughters were born less than 2 years after Gretchen died. She would have been so excited and  having so much  fun with all four of those beautiful kids.  I keep in touch with ‘A’, and her husband, and ‘E’, which has been great.  I see the updated photos on FaceBook.  I know Gretchen would be so proud of all of them.  Her heart was so big, and she loved them all so much.

I don’t think Gretchen ever met a stranger, she was just one of those people who was kind and really cared about people. She got a bunch of kids’ hats, mittens, and socks when we’d go thrift store shopping for kids in her class who didn’t have much.  She thought about what other people were going through when she had a lot of her own stuff going on. But her family made her light up more than anything.  I was so angry that she was missing out on them… on those incredible grandkids growing up, on ‘E”s life after college and grad school (and that she’s working for Target !!), the twins (that she never knew about), and so many of her friends and her former students.

But I got to know Gretchen for a few years.  Very few people have been in my life for such a relatively short period of time and left such an impression.  She was a real friend. I’m lucky to have known her. ❤

The New Oncologist

I saw the new oncologist yesterday. I was a bit nervous, but that ended up being wasted energy. The new guy is young, and the cancer center he’s associated with is pleasant. I told him that I’d been quite satisfied with the care the other guy gave regarding the cancer, but I was having a lot of trouble with how he handled my weight. About half of each appointment was spent telling me “you have to lose weight” over and over. I’m not stupid or blind… I know that I’m overweight, in a way that haunts me daily.  I told the last guy that I was working with my regular doctor (whose JOB it is to help with that -NOT his) and also an endocrinologist, since my blood sugars and insulin requirements went nuts during chemo.  There are so many things that were affected by the chemo, as well as weight gain, and now he gets very dismissive when I refer to the weight gain as being from the chemo. I didn’t weigh this much before chemo… during chemo when I complained about the weight gain, HE said it was the chemo- but not now?

The new guy understands about how the autonomic dysfunction (dysautonomia) fits into ‘exercise’. If I get my heart rate up, there’s a good chance I’ll lose consciousness. If I get overheated from exercise, there’s a good chance I’ll pass out as well. If the fibromyalgia or disc/joint pain gets booted up a notch from repetitive muscle/joint movement, the pain will trigger the dysautonomia. I can do some simple stretching, and if I  walk anywhere, I have to have my rolling walker (or a shopping cart), ice vest, cell phone, and blood pressure cuff.  I would love nothing more than to be able to take off and go walking, preferably with my camera, like I used to, and enjoy being outside. Unfortunately, that’s not safe.  Being unconscious is to be incredibly vulnerable to the not so nice people in the world.

The new oncologist said the only thing he really gets after patients about is smoking. I quit 5.5 years ago when I had the pulmonary emboli (multiple blood clots in all three lobes of my right lung, with enough ‘volume’ to push into my heart, causing the symptoms of a heart attack).  I smoked two cigarettes before driving myself to the emergency room … do not try that at home !  That was that. Cold turkey.  I’m lucky to be alive from so many things.  Anyway, the new doc told me that one day he’d lost three patients from smoking-related cancers…he was angry.  He hated what their smoking had done. On the way home, he’d stopped to get something to eat, and saw five guys smoking in the parking lot. He went over to them, and gave each one of those guys one of his business cards!  I like a doctor with cajones.

The new guy understands what a history of eating disorders can do to efforts to lose weight. It can’t be some crazy crash diet, or things can go south fast. I’m not sure I’d survive another relapse, regardless of my weight.  Eating disorders aren’t about weight, and the symptoms can be very severe in someone who looks like they could shed some serious pounds. Been there, done that. I don’t want to go back to that place.

The new guy has overweight sisters, and he’s been overweight himself. He understands that weight loss requires more activity than what I’m able to do right now.  He understands that I’m stuck between a rock and a hard place, figuring out the balance of calorie reduction, activity, and avoiding the other medical stuff I have to consider.  He didn’t make my weight a source of shame and humiliation. He saw more of the ‘whole’ me, and didn’t focus on something that I’m not there to have treated by him.

I signed consents so the new guy can get information about my cancer treatment from the other guy.  The other guy has no clue I’m not coming back, and I’m not sure how to handle that.  I am very thankful that he knew the current treatment for acute myelocytic leukemia, subtype M3.  I’m very thankful I’m still alive (again).  I also believe that the other guy’s reasons for badgering me about my weight are because of health risks- I get that.  But the way he did it, and the way he didn’t let up after I told him I was seeing other doctors for that (and wanting him to back off and stick to what I was seeing him about), or have any clue about how eating disorders fit into my history made seeing him a nightmare.  I dreaded appointments.  I refused to be weighed, and he still kept on for about half of each appointment telling me I needed to lose weight. The one time he backed off is when I started crying- THEN it became all about him, and how I “couldn’t be depressed” (I was frustrated- big difference) since HE had worked so hard to keep me alive when I was “dead sick”.  I had to be OK for him?  I don’t think so.  I’m very thankful to be alive, and I know his knowledge did that. But my obligation to him lies in my payment source. He’s getting paid. I don’t work for him or his need to feel good about how I’m doing.  That might sound cold- but normally I don’t have to make the distinction about who gets the care during an appointment.

I’m not sure about how to handle any contact from the other guy’s office, or him, when they get the requests for my medical information.  I don’t dislike the guy. I think he’s a good doctor. I think there may be some cultural influences in how he’s been talking to me, and also the seeming unawareness of my total situation.  I didn’t start out ‘normal’ when I was diagnosed with leukemia. I was already disabled. I have a history that he never was part of.  I don’t feel he really ‘got’ what I have to balance- and that wasn’t a big problem when I was lying in a hospital bed for six weeks.  The activity, temperature, and pain issues were minimal, so not something he had to deal with.  But I’m still stuck with those whether he ‘gets it’ or not- and I’ve got to take care of myself.  So, when/if I’m contacted by his office or him directly, I don’t know how to give him any more reasons than I already have. I’ve told him over and over again that the weight is something I’m painfully aware of, and am seeking help in dealing with…what more is there to say?  I don’t want to be nasty.

The new guy is someone I can work with.  He understands his role in my cancer follow-up care, and gets it that I am aware of my entire health history, and current medical issues. He understands that I’m an RN, and have that knowledge as well as my own ‘experience’ with living with myself, and managing the disorders I have.  He understands weight issues, and doesn’t use shame or demeaning comments. He’s also kinda cute!  He’s got a sense of humor. He was willing to do a different type of heart function test (a 2-D echocardiogram, instead of a MUGA scan- which isn’t a ‘bad’ test, but lying on a metal table for an hour is painful- if that had been the only option, I would have complied without question).

Even after just one appointment, I felt like more of a part of my own health care team.  The new guy talked about prognosis (very good), what can happen (and what can be done- also not horrible news), and expanded on more than just the here and now.  At one point, that’s all I needed to know- but now, during the longterm follow-up, I do need to know the big picture. The other guy was very good at telling me the ‘now’ stuff, and was spot on when things happened.  Maybe it’s not just my body that grew, but maybe I just outgrew that other doctor and his way of doing things.  Anyway, I’ve begun a new chapter.  I don’t feel judged or belittled at the new place, and that’s a good place to start. 🙂

Chemicals in My APL Soup

Cytarabine (Ara-C), daunorubicin, ATRA (all-trans retinoic acid), arsenic trioxide (Trisenox),  some more daunorubicin, then methotrexate, more  ATRA, and   M6 Mercaptopurine.   Hmmm, yummy !

Those are the standard drugs for the M-3 subtype of acute myeloid leukemia.  Or, for those in the know, acute promyelocytic leukemia, which accounts for about %10 of all AMLs.  Some people get some of those, I got them all over nineteen months.

When I was first diagnosed, I spent six weeks in the hospital. I started getting ATRA (pills) on day 2 when the lab work was back to know that’s what I needed.  The next day, I started the first of three days of daunorubicin (the red stuff), and  the first of seven bags of Ara-C (each bag hung for 24 hours over 8 consecutive days).  I only thought I felt bad when I got there- but even now, I realize I was too sick to really care how sick I felt.  Overall, however, the side effects were managed well.

The biggest side effects involved my mucous membranes (mostly my mouth and innards) and hair loss (which I couldn’t  have cared less about).  There was some “Magic Mouthwash” stuff that had some numbing medicine and other ingredients to make my mouth feel less like a gravel pit whenever anything touched it.  Otherwise, it was like all of the little wrinkles on the roof of my mouth had smoothed out.  My innards were just sensitive, and there was an express route between my stomach and back door.  The back door got tender.  I only puked once.

My tastebuds died.  Well, actually they just got very ill. Or psychotic.  I craved kosher dill Claussen pickles for a while, then sandwich cookies (which that dear dietician managed to find in various flavors).  I was losing 5 pounds a week (muscle weight), and even though I wasn’t exactly going to die of starvation, I needed to keep my nutritional status up.  The dietician was in my room a lot, bless her heart (and I mean that in a good way- not how it can be used in the South, ha !).  I was loving one food one day, and the next day I never wanted to see it again. She had every menu in the building in my room, and I was allowed to order from any of them.  For a while, I even craved baby food pears and applesauce.  When they sent the jar of peas, I bailed on that option. Bleh.

The hair loss was not something I really cared about, aside from the straggly hairs that refused to give up.  I saw scalp hair loss as an all-or-nothing event.  If most went, all had to go. The strays near my forehead were unceremoniously whacked off by my father with some poultry shears he found in my kitchen.  Chicken scissors for hair trimming. Well, OK.  It worked.  My eyebrows, arm and leg hair, and any other hairs were MIA for over a year altogether.  No biggie.  I didn’t want a wig- so if I felt really spiffy, I’d wear a bandana, or a hat crocheted by my bio-mom.  I’d gotten my first crocheted hat at the hospital, but my favorites were the ones made for me. 🙂

After the induction chemo, I took the ATRA until starting the consolidation chemo – which consisted of arsenic.  Yep. Arsenic.  Trisenox, when not used in first degree murder.  I got fifty doses; two 25-dose cycles.  I had to start out the first week in the hospital to be on a heart monitor.  Then I went to the hospital every day I got the stuff to be hooked up for monitoring. I couldn’t be in the chemo suite at the doc’s office.  I was really tired from the arsenic, but that was the main effect. I’d been told it’s really hard on the stomach, and nausea/vomiting were common; I never puked from arsenic.  I did wonder if I’d croak from heavy metal poisoning while being cured of leukemia.  Hmm. I had a brief second round of daunorubicin, but had to stop that since my heart function was starting to look iffy.  Side effect of chemo drugs.  That and weight gain… I didn’t end up looking like I’d been on chemo; I looked like I’d spent six months eating food from the county fair.

Then I started maintenance… ATRA (did I mention that stuff is about  $120K if someone doesn’t have insurance? ), methotrexate, and M6-mercaptopurine, all on different schedules.  I was supposed to take those for a year.  I made it for 11 months.  The muscle and bone pain were pretty intense, and my  doc said I’d had enough.  I told him I’d stick it out if it meant staying alive, but he said no- I’d be OK.   I’d had no relapses since going into remission in the hospital that initial time, and no major issues come up since the shingles during that last week of arsenic.  My lab work had stayed stable.  I was done.

I’ve been off of all chemo for 11 months.

ROFL at Dementia…or Die Crying

My mom ended up with dementia as a result of radiation for brain cancer. She had the tumor surgically removed, but they wanted to zap the surrounding area a bit to make sure they nuked everything that might cause trouble later.  Seems nuking a brain doesn’t always go without issues.  I was 1200+ miles away, but saw her nearly every Christmas when she and dad came to visit me en route to their winters away from the Midwest. Sometimes the changes were very noticeable.  Mostly, I heard things over the phone; we talked often.

I remember a brief period of time when she knew she was starting to decline. That was terribly sad. She’d tell me “I don’t remember things as well anymore”.  She started labeling things, and even wrote her own obituary; she knew she wouldn’t be able  for much longer. It was heartbreaking. I’d been an RN for many years at that point.  I knew what was coming.  It didn’t really take that long for her memory to be unreliable for current things. She still remembered the past fairly well, so we talked about that.  I’d ask her questions about recent events now and then to assess where she was in the progression of the dementia. If I got too inquisitive, she’d ask to talk to the dog. Literally.  SO, I’d put the phone to the dog’s ear, and get the dog to ‘talk’. That would make mom happy.  She loved her ‘granddogger’.  She thought it was a riot when Hannah (dog) would howl if I said “woof”, or “bow wow”.  That was the cue for showtime. Mom loved that. And it got her out of answering my questions.  The dog was ‘safe’.

Mom went through the usual memory issues, and then her judgement got weird. Normally, before dementia, mom was very polite and had great manners- sometimes even a bit prissy. Not with dementia !  She was generally agreeable, but it was better not to tell her ahead of time if she was going to get out of the car on outings. For a long time, she preferred to sit in the car and wait for dad- doing word find games or reading when she still was able.  But then the dislike for doing anything unfamiliar started. On one Christmas trip to see me, we went to a nice little town known for their antiques, and a little town diner that had great bread pudding (I’m told; I hate the stuff).  SO, Dad and I got her into the wheelchair and got ready to move the chair up the three steps into the restaurant. Other patrons were immediately helping with the door, and before she could get too bent out of shape, she was sitting at the table.  If we would have told her ahead of time, there would have been all sorts of wailing and gnashing of teeth.

She was wheelchair bound except for a few steps, but would order the buffet at a restaurant… like the buffet fairy was going to whisk it tableside for her.  Dad went and got her what he figured she’d like, as many times as she wanted (she wasn’t a big eater, so it wasn’t more than one refill- usually of something starchy).  He and I, with our stable feet, would order the sit-down stuff.  But, mom would be happy.  He did all he could to make every day something that was as pleasant, and pleasing, as possible.  Her last years were one long, huge gift from him.  There weren’t many days when he didn’t at least get her out for a ride, even if just to some random place, and home again.  He didn’t let her just ‘sit’.

Dad took most things in stride. He’d been through a lot with mom, and figured they’d just get through whatever came along.  He called me one day in a moderate panic.  “I don’t know what I’m going to do with your mother”.  Uh oh. She was “MY mother”…. that couldn’t be good.  I asked him what was going on.  Seems that whenever a telemarketer called, she’d say “yes” to whatever they were peddling.  Anything.  Stuff started showing up on the doorstep that was baffling him.  When he asked her, somehow he got an answer that involved some “nice person on the phone”.  Oy.  I suggested unplugging the phone when he ran to the store, or some other brief outing. She couldn’t use the phone any longer, but he didn’t like that idea; he wanted to be able to call her. She wasn’t one to get up on her own, and wasn’t able to wander, so he could get out for up to a couple of hours if he popped in a movie, and helped her to the bathroom before he left; it was their system, and it worked for them.  Anyway, he ended up getting a Tele-Zapper, and calling the various vendors of the stuff that showed up; they were understanding and cancelled any subscriptions, and accepted returns of any items.

And don’t call her during a movie.  If dad had put a movie in for her before stepping out for a bit, and mom got a call, she’d say “I’m watching a movie. I can’t talk.”   Click.  Dial tone.  Manners?  Zippo.  It would be a movie she’d seen about a bazillion times, but it was all semi-new to her.  She especially liked “The Cutting Edge” skating movie.  I used to skate, and she took me to lessons.  The town they lived in was a big winter sports area, and skating had always been part of the local culture.  She used to sew costumes for local skaters when I was little.  She made my little skating skirts when I was four years old.

Thanksgiving often occurred repeatedly in June or July.  Instead of trying to force her memory into reality, Dad went looking for pumpkin pie.  It might take  3-4 stores, but he’d get it, and make her happy.  She’d be clueless a couple of hours later at most, but he didn’t ever want to be ‘mean’ to her.

One trip to some 5-star resort in the Phoenix area got a bit awkward.  After finishing lunch, dad went to wash his hands. When he got back to the table, the head waiter and some guy with a tray of chocolate and bottle of champagne were talking to mom.  What now? The head  guy then congratulated dad on his anniversary (this was in February; their anniversary was in August).  They left the chocolate and champagne (which mom couldn’t have with her seizure medication), and left.  He called me and asked me what he should have done; he didn’t want to embarrass mom.  I told him just don’t show up again at that place for another year. They’d already left the stuff at the table; it wasn’t usable for anyone else at that point.

When the seizures started, dad was dumbfounded at the weird behavior mom displayed. One night he called me all upset. “She’s speaking in tongues again” he half hollered.  Huh?  We’d all gone to the same church since I was a baby, and while they believed in tongues, it wasn’t a holy roller tongue-speaking crowd. Clapping was considered a rousing expression of appreciation.  (Swedes, ya know!). And ‘again’ meant she’d done this before.   He put her on the phone.  She was making NO sense.  He got back on the phone and said she was also taking her clothes off.  MY MOM?  Stripping for the heck of it?  Something was wrong.  I told him I thought she was having temporal lobe or frontal lobe seizures, and he needed to take her to the ER.  I didn’t know how long it would last, and with her history of the right frontal brain tumor, this needed to be checked.  So he got some friends to help load her in the car, and off they went. She was admitted, and started on seizure medication.  The ‘religious’ outbursts stopped.

The dementia progressed, and every Christmas I’d see the latest level of decline.  She could still talk, but her memory was shot.  She transposed past familiar places into the city we would be passing through.  “Where is the Talcott building?”.  Well, gee mom, about 1200 miles northeast of here…. but I couldn’t just say that; she still had feelings, and now and then would feel badly if she was ‘wrong’.

I had decided to move back home to help dad take care of her. He was so adamant about not putting her in a nursing home, even though she was a full-time job.  He wanted to be the one taking care of her.  I didn’t want him to be alone in that.  One of the last things I remember about her  was him calling me to come and “look at your mother”.  When I went upstairs and went to the bedroom where she was sitting in her favorite chair, I had to keep myself from cracking up.  She had put her wig on backwards, and it looked like a fuzzy ski jump hanging over her nose.  I asked her if she was coming or going. She said “It’s really on backwards? He’s not messing with me?”.  I assured her it was indeed on backwards.  She fixed it. Sort of.

They went on their planned 3-month trip to the Phoenix area for the winter. I was staying in their house as I got used to being back in my hometown (a big adjustment from the friendly South).  I had no idea what was going to transpire towards the end of that three month trip.  That’s for another post.  But I will always remember that dealing with dementia is a very difficult process.  Without some humor, it would be soul consuming.