Remembering Peeps and Mom

Mom loved Peeps

Mom loved Peeps

This week will mark the 10th anniversary of my mom’s death.  It really was a miracle that she lived as long as she did, considering bilateral breast cancer (one side was actually ‘pre-cancerous’ but required a simple mastectomy, but the other side required a radical mastectomy), metastasis to her right lung, and metastasis to the right side of her brain.  Those are ‘just’ the cancer sites…she also had other cancer-related diagnoses including seizures that started well after her cancer treatment and dementia as a result of brain radiation.  The dementia was the hardest to watch. On March 13, 2003, she died after becoming septic from a urinary tract infection. She couldn’t verbalize symptoms very well, so dad didn’t know how sick she was until she began to have increased seizures and became unconscious during their winter away in Arizona. She had been ‘fine’ the day before, and had been with him at an art gallery.   Mismanagement (neglect) by the emergency room where she had been taken by ambulance (unconscious) took away any chance she may have had (they sent her home when she needed IV antibiotics- not pills and an elderly husband as her only caregiver more than 2000 miles from home)…but dad and I have to look at it this way: at least she didn’t end up in a facility not knowing anybody, and being impossible to care for at home. She survived 17 years after her last cancer diagnosis… I don’t know many people who have survived the all of the various cancers she had, especially back then.  If I remember right, her first breast cancer diagnosis was in 1981.  Things have changed a lot.

My mom and I were never all that close. For decades, I knew she loved me, but didn’t have a clue if she actually liked me. It was a hard way to grow up, especially when I was little.  As I got older (as an adult) and was able to imagine things from a point of view of someone in her situation (she had two newborn baby boys die within two weeks of their birth about 2 years apart  by the time she was about 25 years old), it made more sense that she couldn’t allow herself the luxury of being  vulnerable to more loss.  She was able to convey warmth to her students during the years she taught 2nd grade and later 4th grade and in the resource room at Rockford Christian Elementary School; they weren’t hers to lose; she could risk more of herself… but I never saw that degree of warmth.  I get it now.  She wanted me. She loved me. And she was terrified of losing me (confirmed by her mother).  It’s heartbreaking to look back at what she went through.  As a kid, I didn’t get it.  I just felt like she wanted me out of her way. I’m glad I was able to get past that as an adult, and feel compassion towards her.  She did the best she could most of the time.  I may not understand her reasons for some things, but I think most people do the best with what they are equipped to handle.  Add the loss of two newborns before her brain was even done growing, and more makes sense. That in and of itself would change her brain chemistry.

As mom’s dementia progressed, she had fewer and fewer things that she remembered and gave her some degree of pleasure. She watched the same movies over and over again, since she remembered them (and do NOT call  her while she was watching them, or she’d hang up on  you- something she’d never do in her ‘normal’ years).  She loved sweet stuff, which I’m told isn’t how she was when she was younger. I do remember her liking ‘Fifth Avenue’ candy bars when we went grocery shopping when I was a kid. She also was quite willing to take my Halloween candy leftovers (I didn’t like Baby Ruths, peanut butter taffy, or most marshmallow candy).  All I had to do was sort it, and give her my rejects- and she loved them.  During her dementia years, spice drops (gum drops) and Peeps were favorites. I made sure she had gum drops when she and dad visited me in Texas.

Peeps began making their marshmallow candies for holidays other than Easter, so I’d go to the store the day after holidays and buy mom a bunch of Peeps when they were half-price. They hardly weighed anything, so I’d mail them to her in Illinois from where I was in Texas.  She loved getting those ‘care packages’. Dad, however, was not all that amused by having to police them, since she’d eat them all at once if left alone with them.  This is the guy who would go all over town in July looking for pumpkin pie since mom thought it was Thanksgiving.  With the Peeps, he’d hear “I want some Peeps” multiple times a day until they were gone.  She remembered they were there…

Whenever I see Peeps, I think of her and the simple things that made her happy during her last several years.  As hard as it was to watch her slip away and become someone who was so unlike the ‘normal’ her, it was also so easy to make her happy.  I never felt I could do things ‘good enough’ as a kid- it may sound sappy, but I wanted to do something to make her happy when she had so little of her real self left.  For dad, it was hunting for pumpkin pie (and other goodies) during the off-season for whatever she had in her head that she had to have. For me, especially before I moved back home to help dad take care of her, it was gum drops when they visited, and Peeps to mail to her.  I don’t like Peeps at all.  But they do make me smile when I think of how happy they made her .  🙂

Peeps remind me of my mom

Peeps remind me of my mom

Dad Went To The Oncologist Today

Over the past few months, my 80-year old dad has been dealing with some health scares, starting with an egg-sized mass in his neck. Several weeks after it was found, he had surgery to remove it on November 30, 2012.  Surgery was considered very successful, as the surgeon was confident that the edges were all well encapsulated, and the mass had been completely removed. But they needed to figure out what had caused this thing. He hadn’t had any symptoms- it was found when he’d gone in for a routine exam to get his thyroid medicine refilled.  He had had two biopsies prior to surgery, and then the pathologist had the entire mass to dissect and tear up, and there was still no definitive answer as to the type of cancer this thing was. They knew it was an extremely low grade cancerous tumor that had actually replaced his thyroid tissue on the right side. They felt very certain that it wasn’t going to have any impact on his lifespan…but they still were not sure exactly what it was.  It had all of the characteristics of a ‘good’ cancer- but that’s about all they knew.

So, he was referred for a PET scan (fancy CT scan) and to an oncologist (who just happens to be the same oncologist I see- and like). I’ve gone to every appointment with dad (until today), since he’s not up on all of the medical terminology.  I’m quite comfortable with medical stuff, being an RN since 1985 and though I have been on disability since 2004, my own medical issues and cancer have kept me somewhat up to date on many things. And, I know how to use the search engines online 😀   I’ve been looking up everything that the docs have said, and I’ve been just as confused as dad.  I wanted to hear what the docs said, since dad calls me with questions, and I wanted to have the info as accurate as possible.  Sometimes dad’s translation of medical terms is a bit iffy !

At the first oncology appointment, the doc was very straightforward. They needed to rule out multiple myeloma. This is a cancer that dad has been terrified of since his mom died of it in a long, dreadful 9-month death back in 1979 at the age of 74.  I remember it fairly well (I was protected from some of the more sordid details- but I was 15 years old, and knew she was very sick), and knew she had been on dialysis 3 times a week during those months, had a horrible ‘quality’ of life, and had coded twice during dialysis.  Back then, they didn’t offer people hospice care like they do now. They went for the maximum treatment, even if they knew it was essentially pointless. Grandma went through hell, and dad remembers that very well.

At that first appointment with the oncologist, dad was told he’d need a bone marrow biopsy, as well as some other lab work.  Dad was offered the choice of doing the bone marrow biopsy then, or scheduling it for another day. I piped up and said he needed to do it then. He did NOT need to spend days worrying about it and imagining the procedure in his head (as he asked me about it, since I’ve had five of them).  The procedure does sound dreadful.  They drill a hole in the back of the pelvic bone to suck out bone marrow.  But, these days it’s much easier than the one I saw during nursing school.  That was the only thing that nearly dropped me to the floor in a dead faint during all of nursing school.  I don’t ‘do’ bone noise. But having them done, I learned that they aren’t that bad. I drove myself to and from three of them (the first two were done when I was in the hospital). So, dad got himself on the exam table, took some deep breaths, and had it done. He did extremely well, however, he didn’t really convince the nurse of his ability to drive home when he answered her with “well, I guess we’ll find out”.  Good one, dad.  We all felt so safe with that answer.

The oncologist also said during that first appointment that his PET scan did not show the usual ‘holes’ in the bones that someone who had multiple myeloma would likely have. And, dad hadn’t had any symptoms. This whole thing was sort of found by accident.  That was all good news. But, the bone marrow biopsy would say one way or another if he had multiple myeloma or any other bone cancer.  SO, after that appointment, there were about two weeks of waiting. He saw his surgeon last week and he felt that the results didn’t show MM- and could possibly be something so rare that he might write an article to be published on dad’s case.  There’s a possibility that this thing actually started as a couple of very slow growing cells transferred to him while he was still in his mother’s womb.  That sort of rare.

Today, I couldn’t go to the follow-up appointment to get the bone marrow biopsy and other lab work results.  I’ve got a nasty cold, and nobody in an oncology office with lousy immune systems needed my germs floating through the air.  Dad promised that he’d call me as soon as he got home, and he did. NO multiple myeloma. No chemo. No chance of that sort of agonizing death (though treatments and chemo are far different now than they were in 1979).  He does have to have some radiation, more as ‘housekeeping’ to be sure that if there are some stray cells they get nuked (the oncologist had mentioned the possibility of this at the first appointment). Dad will have some lines drawn on his neck so they know where to aim the radiation- so it will be visible that something is going on. Until now, I’ve been sworn to secrecy (well, that hasn’t actually been revoked).  But this is good news, and those radiation lines will be visible. People will know ‘something’ is going on.  And here’s the bottom line: dad is going to be OK.  This will not kill him.  🙂

As much as I love Texas and the 17 years I lived there, I’m so thankful to be here now for my dad.  I’m also thankful for the last 10 years that I’ve had to spend time with him. Though face-to-face contact is not as much as I’d like because of my own health issues, we do talk daily, even if he’s on vacation (well, those cruises and other international trips were some blips of time without daily contact, but I didn’t hear that any boats sunk, so I was fairly certain he was safe). When I am able, we do go out and do things together. And he’s always got my back. No matter what, I know that he’s always had my best interests  in mind, and now I want to be there for him to help with medical language translations, and just ‘be’ there.

Time is something that no one can ever get back.  Once it’s gone, that’s it.  I’m trying not to waste what time is left- and that is the kicker- nobody knows when it’s going to be over.  I know that one day he will be gone, and I dread that thought.  I’ve learned during these 10 years back here, as an adult, that he is, and always has been, much wiser than I ever gave him credit for (I think that’s pretty normal- when I moved to Texas, I was 22 years old and still had that post-adolescent ‘all parents are a bit dim’ outlook).  I’ve learned much more about what makes him him, and have so much more respect for him. Being adopted, I could have landed in a lot of places.  I’m SO thankful that I was ‘given’ to the dad I got. While no parent is ever perfect, he did an amazing job as a dad.

I thank God that he is MY dad.  And I’m glad he’s going to be here for a while longer 🙂

The Legendary Swedish Christmas Parties of My Youth

My mom had friends who wanted their sons to marry me so they could get an invite to our Swedish family Christmas parties.  When I was a kid, they were THE family party to look forward to every year.  My paternal grandmother had  a dozen siblings, and while not all of them were in the Chicago area (or even in the United States- or alive), most were at least within driving distance.  They rotated whose home hosted the dysfunctional chaos, er…uh, party. In those days, it wasn’t a potluck- the hostess did all of the cooking.  That in itself was a major undertaking. Add 50-60 people in various ages and stages of sobriety to the mix, and it was a big deal!  I loved it!   One year, dad was anxious about driving in the bad weather… he’d heard about some folks who had skidded off of the highway (not the bazillion who got through).  Mom and I started bawling.  Dad ended up taking the plunge, probably wanting to risk ending up in a ditch vs. dealing with being blamed for ruining Christmas that year.  We got there and home just fine.

My dad’s parents both came over on a boat from Sweden in the early 1920’s.  They were on separate trips, but left from the same place in Sweden (Goteborg), and on the same ship (Drottningholm), though different years. Grandpa thought that anything was a party; he had a great time en route to a whole new life in America ( and later, just mowing the lawn). Grandma wasn’t as fortunate on the trip. Her many siblings were of some comfort, but at Ellis Island, they ‘lost’ one of their sisters in the fray and later found her at the hospital on Ellis Island.  She later was taken back to Sweden for medical reasons, and died as a young adult. On the train from NYC to Chicago, somebody (not family) slit their own throat in the train bathroom and they had to watch blood flow down the aisle of the train.  They were young- some just kids.  And they were terrified. Nobody spoke English. But they all brought their ethnic cooking and holiday customs with them.  All of the various great aunts and uncles, and assorted cousins of parents, second cousins, first cousins once removed, and so on all reaped the benefits of those celebrations.

The Christmas Eve celebrations began in late afternoon at someone’s home.  The women of the generation that came over on the boats were generally involved in helping with the final cooking and food prep, and getting the table filled with food that was served buffet (or smorgasbord) style.  The ‘middle’ generation (those born in the United States to those who came over on the boats) were busy getting caught up on the year’s events….and drinking glögg (more on that in a minute). The youngest generation were running amok. There were basically two ‘sets’ of ages to this third group. I was in the  younger group.  The older group was 3-12 years older than I was (give or take a couple of years).  We just had fun and enjoyed seeing each other.

 

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Christmas Eve 1932…. my dad was about 4 months old.

Before getting to that smorgasbord, there was a tradition of making a sort of semi-sedate conga line, everyone holding the waist of the person ahead of them, and making a chain throughout the house, moving to the song ‘Nu År Det Jul Igen’ (It’s Christmas Time Again).  It was mandatory. Only one person really knew the words to the whole song (one of grandma’s sister-in-laws), and the rest of us mostly mumbled to the tune.  It is a catchy little number!  If anybody has seen the movie ‘Fannie and Alexander’, it’s in there. And the song itself is  on YouTube.

The smorgasbord  was a precursor to the high protein diet craze. Most carbohydrates had a rough time getting on that table. There was always ham (and for the host family, ham for days in various incarnations), Bondost (Swedish farmer cheese with caraway seeds), ‘korv’ (pork and potato boiled sausage), pickled herring, sylta (think ground veal jello- not my favorite), Swedish meatballs (a very special recipe that I still make),  lingonberries (tiny Swedish cranberry-like fruit), and the other permitted carbs: hardtack (thick rye cracker) and limpa (Swedish rye bread), some baked brown beans that are like ‘regular’ baked beans (I hated them, and still do), a green lime and pear jello mold (another ‘I’ll pass’ item), and boiled potatoes. Must have boiled potatoes.  Carbohydrates were more like condiments than a food group for the holiday dinner…except for the cookies later in the evening.  It was an amazing meal that I looked forward to every year.

At midnight, lutefisk was served (with more boiled potatoes, a cream sauce, and nutmeg).  There are many jokes about lutefisk, and for good reason.  It’s cod that has been soaked in lye, and then dried (to preserve it back in the days before refrigeration or freezers for long journeys on ships, or just because; during the winter, living near the Arctic Circle made for some iffy fishing opportunities). Lye is the same stuff used to make soap, oven cleaners, and drain opener. The fish had to be rinsed in water for days (water changed daily) to be sure it didn’t create an opening between the esophagus and neck when someone ate it as the lye ate through the person.  Sounds yummy, eh?  It was/is so popular in Scandanavian circles that it is sold in plastic bags, packed in some of that final stage of rinse water, ready to heat and eat!  Once boiled, the texture is similar to gelatinized rubber bands. With fish flavor. Strong fish flavor. Are you hungry now?   I haven’t had the stuff for decades, but I did eat it as a kid.  Those who have read some of my other posts know that my food intake was very restricted when I was a kid; I’d eat just about anything when I was turned loose at the Christmas party. Except the cloyingly sweet baked beans, and that green jello mold. Not going near those.  Had to save room for cookies 🙂

For those who don’t know about glögg, it is a mixture of brandy, port wine, some ‘warm’ spices, orange rind, almonds (had to have one in the bottom of each cup, or some horrible Scandinavian evils would find their way to the unlucky imbiber) and Everclear…or basically the kerosene of drinkable alcohol. To make it so that it wasn’t a form of euthanasia, it had to be ignited to burn off some of the alcohol.  That just meant that more was consumed.  There were some bonafide alcoholics in this family.  For the most part, they just got rowdy and loved everything ! I don’t remember any mean drunks… and for a long time I didn’t even realize why Santa didn’t show up until 2-3 a.m..  One of the first generation had to sober up enough to dole out the presents in a Santa suit, and it had to be one of the older generation, as the middle generation had kids who would miss a parent during the gift opening.  Us kids would be dozing off, and jerking ourselves awake when we realized that we were still waiting for Santa to show up. They were long nights ! But the sort of dysfunction that made for amazing memories 🙂

The glögg did have some unpleasant effects; one year a neighbor of the host and hostess knocked on the door to inquire as to the identity of the person who was face planted in the snow pile out front, with his arse in the air…my dad and one of his cousins went and fished out Cousin B from the pile of snow in the front yard… Good times !

Eventually, someone would come stumbling down the stairs shouting ‘Ho, ho, ho’ and laughing in a jolly manner. All of us kids would suddenly perk up.  Often, someone was walking closely with ‘Claus, and I now wonder if it was for stability should ‘Claus start having trouble with his balance and gravity.  To me, it was the start of an amazing thing. It fascinated me that whatever I flagged in the JCPenney Christmas toy catalog  at grandma and grandpa J’s house would show up from Santa !  (I was the only grandchild of my paternal grandparents).  Grandma seemed to have some direct connections to the North Pole. (And Grandma J never told Santa I needed socks or undies). Imagine 6 of us ‘younger’ kids and 4-5 (depending on the age cut-off) of the ‘older’ kids all opening gifts at one time, in their respective ‘groups’ of families. Gift wrap, bows, and boxes would be coming down blizzard style. It truly was a magical time, especially when we were younger.  Looking back at the old photos, it’s obvious who was stuffed into the Santa suit; as children, we were mesmerized to be in the presence of the ‘real’ Santa Claus.

Every year was fun. It was a holiday that was steeped in ethnic traditions that made it special, and unlike anything I’d see on TV or heard friends talk about. The real reason for the season was sprinkled into the evening at some point, but Jesus’ birth was not the main focus of the celebration.  My parents and I always celebrated church Christmas events, so I was very aware of the meaning of Christmas; the Swedish party was the heritage part of the season.  I loved those parties. We still have smaller versions of the old days, with family who is in town (or at least nearby), and some years, those who have moved away will join in. Now it’s a potluck, which makes it nice to be able to contribute, and not as horrible on the hostess.  I’ve been limited in actually being at the parties due to the heat intolerance with the dysautonomia, but with the ice vest I now have, I’ve at least been able to go to the last part of the evening  It’s much earlier in the evening  than it was when I was a kid, and the glögg is enjoyed in moderation (I can’t drink at all for medication reasons).  I make the meatballs to send with my dad- same recipe that we had at the old parties. The ‘dance’ before eating is still done.

It’s still a very special part of the holidays, and wonderful to remember the ‘old days’. So many are no longer alive, but thanks to those decades of  incredible family parties, they are still there in spirit.

Swedish Christmas Eve, and my cousin's last Christmas…

Swedish Christmas Eve, and my cousin’s last Christmas…

Edit:  Christmas Eve 2013 was bittersweet… while the old traditions were still there, and our heritage was celebrated in familiar ways, it was the last Christmas for one of my cousins, who had been battling cancer since the summer.  At Christmas, I was still hoping things would be OK eventually, but I was also concerned about some new things she told me about.  She lost her fierce battle on March 2, 2014.   Her mother (dad’s first cousin) died later in 2014.   She was the hostess of the Christmas Eve parties for many, many years.

And, in 2016… it will be much different this year without dad.   SO much family history was tied up in the Swedish Christmas Eve party…. and it will be missed.   I’m so thankful for the incredible memories.  ❤

When Dad Had Surgery

Those who have read my blogs know that my family is no stranger to various cancers and health issues.  My mom had bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- all cancer. She also had chemotherapy and radiation. I’m a medical train wreck, including leukemia (APL/ AML- sub-type M3), diabetes, dysautonomia, multiple pulmonary emboli (all three lobes- acute, subacute, and chronic -all found at the same time), lung scarring, seizures, multiple concussions, yadda, yadda, yadda…  My dad has been the rock for both of us (mom died in 2003, after being 17 years free of cancer, but with 10 years of dementia caused by the radiation to her brain; she died from sepsis- not cancer).  Dad is the one who takes care of my beloved schnauzer when I’ve been in the hospital.  He didn’t own a bottle of Tylenol until a month ago.

Dad had to go to the doctor for an annual look-see before getting his year of thyroid pills refilled. The doc poked and prodded on his neck, as per usual, and felt ‘something’. He decided he wanted to get an ultrasound to figure out what the hard pea-sized ‘thing’ actually was.  Dad got scanned (I had to reassure him that it was painless and very quick), and instead they found a large (2 x 1.5 x 1.5 inch) mass coming up from the right side of his thyroid.  That’s BIG for the neck area- there are a lot of veins, nerves, arteries, muscle, windpipe, and esophagus related structures in there.  Now they wanted a biopsy.  Numb it up, take some needles and withdraw some of the tissue. They did that, and dad did well… the results, however, were inconclusive.  He was sent to a neck surgeon to figure out the next step.

The neck doc had seen the biopsy and ultrasound results, and felt that it was a cancer, but that it had actually replaced the actual thyroid tissue on the right side; the left side looked OK, at least from the tests.  The ENT surgeon (neck doc) decided to get a CT of the area to check for any lymph node involvement. He did feel that it was some sort of cancer, but reassured dad, and myself, that the vast majority of thyroid cancers are fixed with surgery. Dad should be fine.  But, in the meantime, they wanted to get some more biopsy material, to see if they could narrow down what was going on in there- but bottom line, the thing had to be removed.  It was too squirrelly to leave in there.

Dad is a guy who is 80 years old, and takes a lousy Synthroid pill every day. That’s it. He lives alone, runs around ALL over the place, has a social life that pretty well has him ‘booked’ every day with something, and has really never known anything about chronic or life-altering illness. He has been incredibly blessed.  He had a busted appendix in the early 80s- that was bad. But he got well. He had his gallbladder removed, and aside from post-op vomiting, he was good to go in a week.  He’s been remarkably healthy.  SO, all of this medical stuff that involved HIM was completely foreign.  Mom had numerous surgeries and became totally dependent on him during her last 10 years (he was amazing as he cared for her at home). I’m mostly independent, but when I’m in the hospital, he’s been the go-to guy to make sure my dog is OK, and my laundry gets done when I’m holed up. He has been really healthy.  This whole ‘being sick’ thing isn’t something he really knew what to do with.

While I know that I’m likely to outlive him, I hate even thinking about him not being here.  I have very few people around here that are very present in my life. I’ve got friends- mostly in Texas. The people I know here are mostly interacted with on FaceBook- most I haven’t seen in 30 years.  Dad is the person I talk to daily.  He’s the one who I know always has my back. I don’t have anyone else who could take care of a schnauzer in heart failure with medications (or who even knows her very well), or who I can call for just about anything.   I have some amazing and incredibly dear family scattered about… but dad is just a few minutes away. They are wonderful, yet my physical situation doesn’t make it possible for me to be all that mobile to see them all that much; I certainly feel that I’ve been too much on the ‘fringes’ to just call anyone.  Thinking that something could be wrong- and BAD wrong- with him was a lot to take in.  I have been going to MD appointments with him during this- partly because I want to be supportive, and partly because I’m an RN (disabled, but still have my license since I earned it, and it is MINE) and understand more of the medical terminology, so when we leave, I know how to answer his questions better.

The day for surgery finally came, and while a friend of his got him to the hospital, I definitely wanted to be there before he went into surgery. I wanted to talk to the anesthesiologist about his severe vomiting after getting Versed for other procedures (the anesthesiologist practically challenged me on that- said it wasn’t possible- must be the gasses used, even though it was the only common denominator the times dad had gotten sick- and a few times he hadn’t had ANY gas….time to back off when the doctor thinks he’s always right- wouldn’t help dad, and the doc wasn’t going to listen).   He ended up giving dad Versed, and sure enough, he was sick- though not nearly as badly as other times since they gave him more anti-nausea meds post-op.  Evidently, this type of surgery is more likely to cause a problem with nausea and vomiting because of one of the nerves in that area- which dad didn’t need to hear minutes before going into surgery.  He was already terrified.

They wheeled him off, and his friend and I began the wait.  It took about 3-3.5 hours for the actual surgery, then about 2 hours in recovery. After the surgery, the surgeon (who is wonderful) came out and talked to us.  The initial pathology report sounded potentially ominous. He thought it was a low grade lymphoma, and it might require chemotherapy. It wasn’t thyroid cancer. But until the final pathology reports were back in about 5 days, there wouldn’t be any more information than that.  No point in telling dad part of the story, so he could worry- we all planned to stick with ‘the final pathology reports aren’t back’ which was true, and kept him from spending days in terror thinking he was up against something terminal.  Nobody hears ‘cancer’ and their first thought is that it’s positive.  Since I’d been through extensive chemotherapy, my initial reaction was that he’d have that to deal with, even though most chemo isn’t a daily occurrence.  Most chemo is anywhere from every few months to a few times a week (until the time when pills are used daily for maintenance for a period of time).  I cried. I didn’t want that miserable existence for him…he was always on the go.  Having an indeterminate amount of time to deal with feeling lousy was no way to spend the precious years he has to live.  He’s no where close to slowing down.

Dad stayed in the hospital for 2 full days after surgery. More on that in another post.  He did  pretty well from a nursing standpoint, but from the perspective of a daughter, he had one rough day after surgery and was gradually improving, but it was still tough to see my active, never-holding-still dad lying in a bed, or sitting in very institutional furniture.  My dad who can graze his way through the day eating anything in sight was doing well to get a diet Sierra Mist down.  This is a guy who likes to eat!  He was nauseated most of the time (but can’t be the Versed!).

We got to the appointment to hear the final pathology report…more anticipatory tension.  We ended up getting some relatively wonderful news- yes, it’s a low grade cancer, and he’ll need scans to check the rest of his body for other masses- which may or may not have to be removed, depending on if they were causing trouble.  The mass was well-encapsulated, so not just spreading willy-nilly in his neck.  Also great news. The surgeon thought it had been there for 5-10 years, it’s that slow growing. He’ll be seeing an oncologist after the scans to find out what was next (come to find out, he’ll be seeing my oncologist, so I could reassure dad that he’s a good guy).  I got some label for what the description of the mass was, but when I looked up the words online, it was more confusing than helpful; will wait to ask the oncologist 🙂

Dad is going to be OK.  The doc said that this kind of cancer won’t kill dad. It’s quite probable that he’s going to have another 10 years of quality living.  That is a huge answer to prayer.  Yes, one day dad will die. But thankfully, it won’t be anytime soon. ❤

When It’s Too Late To Fix Leukemia

This week, a local anchorwoman died of complications from leukemia. She was diagnosed on Tuesday and was dead Thursday night. Two days. That was it.  She had been working as scheduled  up until the day she called 911 for a worsening bladder infection, with severe pain and nausea. Then she got the devastating news she had leukemia. The next day she needed emergency brain surgery, and never woke up. She was 29 years old. Vibrant. Professional. Animal lover. Upbeat.

You can search:  Jeannie Hayes, WREX-TV 13, Rockford, IL and get more of the media reports.

Of course my first thoughts were with her family, friends, and coworkers. They had no time to really register what was going on.  One day, she was working, the next day she finds out she has cancer, and on the second day she died.  Scary stuff.  I’m sure they’re still in somewhat of a state of shock. Her viewing was today at a local church.  A week ago, their lives were ‘normal’.  They had no warning.

As a leukemia survivor (also with acute myelocytic leukemia, subtype M3, or acute promyelocytic leukemia), it hits really close to home. I don’t know what subtype Jeannie had.  I found out about mine through a standard CBC (complete blood count) that was part of my annual diabetic assessment. My lab work was BAD. As an RN since 1985, I didn’t necessarily know what flavor of ‘bad’ I had, but I knew it wasn’t good- I had a bit of warning.  I had been scheduled for a bone marrow biopsy, but didn’t make it to that appointment before the shortness of breath led me to a 911 call. I have a history of blood clots in my lungs, and have been told to always get anything ‘funky’ checked out. I knew what my lab work looked like. And I knew that the shortness of breath was likely due to anemia. But I never know…

So, I’m in the ER for hours (crazy night there), and got admitted when the doc told me she didn’t know what was going on, but my labs had dropped by half in a couple of weeks (there wasn’t much room for them to drop). She was really concerned. The next morning I met my oncologist and within 10 minutes they were doing the bone marrow biopsy.  The morning after that, I got the diagnosis, was moved to a room in an area set aside for those who must have as minimal exposure to infection as possible, and started on chemotherapy pills.  I also got a PICC line inserted, even though my platelets were horrible; I had to have vein access for the IV chemo that started the following day.  I soon developed purpura on my legs and abdomen (tiny purple hemorrhages from low platelets)… not a good sign. Thirteen units of packed red blood cells (blood transfusion) and twelve units of platelets were needed during my stay… THANK YOU, blood donors.

Had I not gone for the annual diabetic lab work, I wouldn’t have lived. My oncologist told me that I was in really bad shape.  He called it ‘dead sick’ in his Iranian accent.  And I remember being too sick to care what they were doing. I had some infections set in, and was on vancomycin and gentamycin for about 5 weeks. For those who know what those are, they know that they’re strong antibiotics. I also was given 2 ‘protective’ eye drop antibiotics and steroids.  The ear infection and cellulitis into my neck and jaw were pretty bad.  The ENT doc had to pry my ear open to put in a ‘wick’ for the ear antibiotic drops to seep into- there was no opening in my right ear from the swelling. None…it was ‘slammed’ shut with edema and infection. The ENT also had to suck out the pus from my ear.  My temp was over 103.  For someone with no immune system to speak of, that’s not good.  I got very lucky.

If I hadn’t had that routine CBC, I wouldn’t have gotten any follow up, or known what was going on.  I’m so used to having something go wrong medically, I blow off a lot.  Note to self: don’t blow stuff off.  My ‘vision’ of my demise is me just going to bed, and not waking up.  My dad may have found out I was dead after not hearing from me for a couple of days. I hate to think if he would have come over and used his key to get in, finding me on his own… and my dog wandering around confused (we talk nearly daily as ‘attendance checks’- he’s 80 years old, and I’m a train wreck- we try to keep track of each other).

I’m so grateful I found out in time to get help.  I’m expected to be OK. I went into remission during that first 6 weeks in the hospital (April-part of May, 2010).  In April 2015, pending no relapses, I will be considered cured.  I’m one of the lucky ones. It was hell going through chemotherapy for 19 months, including 50 doses of arsenic infusions (IV), and 11 months of tretinoin, methotrexate, and M6mercaptopurine.  My body went through a lot. But, I got a chance to live.  APL is one of the most curable forms of leukemia, when it’s detected and treatment started immediately.

How I wish Jeannie would have had that same chance.  Even ‘just’ a chance to say goodbye, and have some time to do what she needed to do before ‘just’ not being here anymore.  I wish that for everyone.  IF someone ends up with cancer (or anything terminal), I wish them the chance to see their loved ones and for them all to have the opportunity to let go of each other, hard as that is.  I wish them the chance to ‘finish’ things. My understanding via the tribute on her news channel (WREX-TV 13), is that her family got there when she was in a coma after the emergency brain surgery. They came as fast as they could, but the cancer was faster.

I later read that the average time someone lives without treatment after the onset of the disease (with minimal symptoms) is 30 days.  Many people are diagnosed at autopsy.  The biggest ‘tip’ I could give anybody- if you feel something isn’t right, get it checked until you get an answer that makes sense.  Not everybody can be fixed.  But everybody deserves a chance.

For everyone else, it’s probably a good idea to know what you want to say to people, and do it.  Get things put together.  None of us are guaranteed tomorrow.

EDIT- 11/21/2012- Today, WREX gave info about the specific type of leukemia that Jeannie Hayes had. She had acute promyelocytic leukemia (APL).  This is the same type of leukemia I had- and makes it even more sad, since it’s one of the most curable when it’s caught in time.  Like Jeannie,  I had no specific symptoms to suspect cancer. I had routine lab work done.  Jeannie had the bladder infection, and it was ‘caught’ when she went to the ER for that.  I also had some bleeding issues- but was in the hospital, and because I was already being treated, I was able to recover.    My thoughts and prayers go out to Jeannie’s family and friends.  There was no time to say goodbye.  ❤

What If It’s Bad News?

My dad turned 80 years old a few months ago. He’s active, takes care of himself, has a lot of friends, and has never really had to handle serious medical problems of his own. He saw my mom through four cancer surgeries, radiation, chemotherapy, dementia from radiation, and many other surgeries and hospitalizations. He’s seen my disabilities and inability to work as an RN over the last few years.

He’s got an amazing social life, and solid church community that is a big part of his circle of friends.  He goes out walking nearly every day, whether at the mall or a nearby walking path.  Most nights he has something to do and somewhere to go.  He drives all over the place, and is safe driving.  His mind is intact, and he enjoys so many things.

Last week he had a biopsy done on a mass on his neck.  It’s a good sized mass for being on his neck- about 2.5 x 1 x 1.5 inches (not centimeters).   I’ve felt it, and it’s substantial.  Any neck mass can become very complicated because of all of the other structures in that area- windpipe, esophagus, arteries, veins, muscles, nerves… it’s a crowded area for an abnormal mass.  This isn’t really on his thyroid.  It’s more ‘vertical’, and along the trachea- but a bit over to the right.

Today at church his doctor said that there were ‘suspicious cells’ in the biopsy report.  If the test had been ‘OK’, he would have said so.  There is only so much he could say in the middle of the church lobby; to me that isn’t good.  I have no idea what sort of cells they found- and it is possible that whatever is there is very treatable, and not life-threatening.  ‘Suspicious’ doesn’t necessarily mean cancer- but it could.  I’m the sort that thinks about the worst case scenario, and then is pleasantly relieved when it’s good (or better) news.  So my mind is going all over the place.  I’ve seen too much since 1985 when I became an RN.

Mostly, I’m scared for my dad.  IF it turns out to be cancer, there will be decisions about how much to treat it. Tomorrow, Dad is expecting a call from his doctor’s office about a referral to a surgeon; the mass has to go. That has been decided.  After that, I worry about chemotherapy (I finished 19 months of chemo for leukemia a bit over a year ago).  It’s brutal, and not meant for someone with an active life who has never been sick to any extent in 80 years.  I think about radiation- and the  possible side effects. My mom ended up with dementia after radiation to her brain for cancer. Granted the neck isn’t the brain…but I can’t help but think about it.

I’m afraid I won’t be enough help because of my own limitations.  I drove myself to all of my own chemotherapy appointments (more than 50 of them for the IV infusions), but I’m not sure Dad will want to go alone.  I’ll figure it out, with the medical equipment/supplies I’d need.  We’ll get through it.  I just want to do enough.  I want him to know I support him.  I want him not to be any more afraid than he ‘has’ to be.

As a nurse since 1985, I’ve seen a lot.  I know what can happen with neck surgeries, and also what happens when people just want to try anything and everything ‘in case’ something works. I ‘get it’.  It’s human nature to want to live. I’ve seen so many slow deaths from cancer. If this is cancer, there will be a lot of decisions he has to make.  I don’t want him to have to deal with any of that.  I want this to be some cut and dry ‘surgical fix’, and not months of being tied to chemo and/or radiation appointments.  I’ll be supportive of whatever he decides; I just hope that he finds quality in the rest of his life and that this is a temporary bump in the road.  He’s been so active and healthy; something prolonged would be very hard for him.

Tomorrow he will know more, and I’ve asked that the doctor’s office also call me, so I can hear from them what is going on.  I’ve never asked him to have them call me before.  But I’ve never had him tell me that the doctor said he had ‘suspicious cells’ in an abnormal mass.  It’s my dad.  My mom is gone, and he has been my rock.  We talk daily to make sure the other is ‘ok’.  When I’ve been in the hospital, he’s the only one I’ve had to make sure my dog is OK (and that is a huge relief when I’m holed up).  Hopefully, I’m just being an overly worried nurse who knows what ‘suspicious cells’ can mean.  Hopefully, the surgery will be simple and fix a benign problem.   Hopefully, my Dad won’t have to make decisions about quality vs. quantity of life.  Hopefully, I’ll be able to be ‘enough’ help and support for him.  Hopefully, it’s not ‘worse’ bad news. ❤