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 🙂

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. ❤

80 Years Young…. My Dad

Tomorrow, my dad will be 80 years old. He’s playfully denying it.  And, he can get away with denying it since he looks so good and still runs around like a maniac.   He spent many years taking care of my mom as she declined from dementia, and since her death, has finally been able to retire; she was work (though he loved her enough to stay with her through anything and everything).  He is healthy, has friends, and can do pretty much what he wants to do. He’s blessed, and he spent years working to have a nice retirement.

My dad was the first born child of immigrants from Sweden.  His father came from Borgholm, Öland, Sweden, and his mother came from Nordmaling, near Umeå, Sweden.  They arrived in separate boats, and had very different experiences on their journeys.  Grandpa thought everything was a party, and enjoyed the whole trip.  Grandma and several of her thirteen siblings were miserable, and once they got to Ellis Island actually ‘lost’ little  Elida, who had gotten sick. They later found her in a New York City hospital suffering from asthma. She was eventually sent back to Sweden, and never saw the Midwest.  None of them spoke English, and their last names were changed to a more American spelling.  Then one of them goes missing. It was a terrible first few experiences in a new country.  It got worse.

Grandma and her siblings took a train from NYC to Chicago. En route, one of the passengers slit his throat in the bathroom of the train, and they all had to watch the blood flow down the aisle of the train car.  From what she told me, nobody did anything to help the situation.  They were all quite young, in a new country, not knowing the language, and witnessing things that were completely horrifying to anybody who was familiar with their surroundings.

My dad was born in 1932, and his parents were too poor to care for him initially.  They were thrilled with a new son, but heartbroken at not being able to care for him. They were very  grateful to have family friends  ‘keep him’ for nearly eighteen months until they could properly care for him.  They all saw each other, but it wasn’t the same.  Once he was back with them for good, he did the typical things a young boy did. His first major accomplishment was to learn English when he went to kindergarten; he spoke Swedish the first five years of his life.  His parents learned English from him, and immersion in the American culture.  Dad went to Boy Scouts, had a paper route at age nine, and ran with his friends in the neighborhood.  He still has some of those friends now.  He remembers hearing about Pearl Harbor when it was announced on the radio.   He remembers clearly when his younger brother arrived in 1946.  He remembers every job he had, and worked hard for decades.

He became a born-again Christian just prior to going to college.  That was the single most important decision in his life.  He joined a solid church, and still goes there nearly every Sunday.  His core circle of friends is there- and they’ve all known each other since the 50s or before.  I’m indescribably thankful for his decision that I be raised in the church.

Dad went to college with a good friend, by working his way through, and graduated from the University of Illinois.  He became a teacher of history and P.E.  He got his Masters in Education in night school.  Later he became an assistant principal of a middle school, then the principal of another middle school, and finally a high school principal at the school I attended.  He was there for twelve years. Now they can’t get anyone to stay for more than a few years. Fortunately for me, he was liked, or that could have been weird.  At first, he’d gone to college to become a lawyer !

He and my mom got married in 1957.  A couple of years later, they lost their first son to hyaline membrane disease (something that would be easily treated now).  Another couple of years later brought more devastation when they lost the second newborn to the same disease. My mom never saw the babies.  Dad had to plan each funeral on his own- both before he was thirty years old.  It was then they decided to adopt a child, and got me in 1963. Mom never really recovered from the deaths of the babies; dad became more driven to work.

Dad and mom travelled extensively over the years, getting to all fifty states and fifty countries before mom died in 2003.  As a teenager I wasn’t that thrilled about not getting to go with them, but I got to stay with my grandparents (I was the only grandkid on that side of the family, which definitely had perks).  That was OK.  Now, I’m so thankful they had the opportunity and ability to do that traveling.  Since mom died, dad has travelled even more, including two cruises (Australia and the Panama Canal) and a trip to Ireland.   He’s done countless road trips, and winter escapes, in this country.

Mom’s illness had a huge impact on dad.  She had multiple cancers and other surgeries,  so was frequently in some state of recovery.  The dementia from the brain radiation was the roughest , as she deteriorated one cell at a time. That left a shell of who she had been and froze the grieving process mid-stream, as she was still technically present. He never complained about taking care of her.  He shaved her legs, trimmed her radiation-ravaged hair, and bought her clothes. He learned how to dress and transfer her from her chair to the bed, and anyplace else she needed to ‘land’.  When she thought it was time for Thanksgiving in July, he went to as many grocery stores as it took to find pumpkin pie for her.  He never thought to tell her ‘no’, as he never wanted her to  feel he was treating her without dignity.  When she died, I knew what was happening (I’d been a nurse for 18 years at the time), but he thought she would pull through just like she always did.  He was heartbroken.  He really loved her; they were faithful to each other for 46 years.  He has told me that if he were to do it over again knowing how she would end up, he still would have married her.  She could be difficult; she  could carry on a conversation about 40 years ago, but don’t ask her what she had for breakfast.  He still stayed with her, and refused to consider a nursing home.

He was (and is) fortunate to have many church and high school friends, and kept active in those early months after mom died.  He found people to hang out with, and when my health has had some significant bumps in the road, has always been there for me.  His main ‘job’ when I’m in the hospital is dog-sitting.  He loves his grandogger. And she loves him.

My dad isn’t perfect, and some in my mom’s family have seriously disliked  him over the years.   He cares about them, because they’re part of my mom. He’s ticked me off at times, but he’s my dad.  I love him more than I could ever stay mad at him.  Yeah, he can drive me nuts sometimes, but that’s just ‘normal’. I’m sure I drive him nuts sometimes, too !  I was never beaten or otherwise abused by him.  He always sought my greater good.  But he never ‘made’ me do anything for his sake.  If he nudged me, it was for my good.  He has a really good heart, and can’t stand to see anyone in pain.  That’s the only thing he’s ever stepped away from the room for when I’ve been in the hospital- even if I don’t complain. He can’t stand to watch someone he loves hurt.  The people who don’t believe that don’t know my dad well enough to have a clue.

In the end, I know he is the primary human in my corner, who is there  unconditionally.  I dread the day when his time on earth is over.