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. ❤

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. ❤

Yo, Doc…I Don’t Worship You

I went to see a surgeon about getting rid of some cysts that I get on my scalp. I wait until I have a ‘crop’ of them before bothering with them, but eventually they do get infected, so I prefer that they are gone.  This isn’t anything new. I hadn’t anticipated any problems.  This same surgeon had inserted and removed my Hickman catheter for chemotherapy. He’d been pretty decent to deal with.

So,  I go to the appointment, and he’s deciding what he wants to do, and we both agree that doing it under a local anesthetic would be fine. I’d prefer to not get knocked out; anesthesia doesn’t sit well with me and I’ve had some nasty complications.  Then he tells me he’s going to do it in a small town about 15 miles from here. There are three good sized hospitals (250-350 beds) and an ambulatory surgery center here in town. In the little town, they have a ‘branch’ hospital of one of the larger hospitals. If something unexpected happens, I’m either stuck in that dinky hospital, or I’ve got to be transferred.  And why should I have to go out of town to a smaller place?  The nurse said that the doc thinks it’s quieter over there. Really?  I’m being inconvenienced for his convenience?  I didn’t see him walk on water. I’m not impressed. I think he may live there, and it would let him sleep in later instead of driving here early in the morning. But that’s pure speculation.

Then I tell him that the driving distance is an issue. So he tells me that I’d have to have someone drive me here in town even for a local anesthetic, so just find someone. At that point I hadn’t brought my dad into the picture (the one who does the driving in these situations).  I am always within a cab ride or bus ride away from home no matter where I go for medical stuff; I always want a backup plan even if dad is going to drive me. There is no bus between that little town and home, and a cab would be more expensive than the surgery.  I told the doc I don’t have anybody to ask, and he insists that I can come up with someone. I told him I’d have to ‘rent’ someone (which will be the case when the time comes that my dad isn’t available).

That made me mad. When I say that I don’t have a lineup of people to drag me through two counties, I mean it  (well, dad is willing to take me there, but that wasn’t the point).  Not everybody has a list of people who will be available to help them at the drop of a hat.  Not everybody has friends that they’re in contact with regularly- or even in the same state.  I’ve got one friend here who just had some significant complications after one surgery, that required another surgery, and she’s still recovering. She also has a toddler, and works part time when she’s not recovering from surgeries. We’ve talked, and had FaceBook contact, but I haven’t seen her for 27 years. I know she’d help if she could.  I know a very few other people who also work, and I haven’t seen them since 1985 either; it’s all FaceBook contact. 

I don’t go out of my way to be difficult, and I’m not obligated to go into every reason why I want something done closer to home. If that little town had some medical center of the universe, I might think differently (but probably not for some stupid scalp cysts), but it doesn’t. To me, it’s like ‘The Podunk Urgent Care and Taxidermy Shop’…not really fair, since it’s associated with a good hospital (actually my preferred facility IN TOWN). I have to have the local anesthetic without epinephrine, which will increase blood loss- but the epinephrine would make the dysautonomia go crazy, and there’s a considerable risk of ending up in ICU. I’m not just being stubborn. I need to be closer to home, in a decent sized facility, or even the ambulatory care center, where they deal with emergency transfers if needed.  Then I got to thinking that maybe something was wrong with the doc being banned from the hospitals here, but the info online didn’t show any problems.  It was purely for his convenience or preference.  Yeah, well buddy? I’ve got some preferences as well, that revolve around safety and getting this done without any medical mayhem happening because of being somewhere that isn’t as equipped to deal with blood loss and/or the dysautonomia. And yes, he knows about the dysautonomia.

So, I got the call from the nurse at his office thinking she’s going to schedule the procedure out there in the back forty, and I told her I’m not going to be going there. She then asks “So I should cancel it?”, and my unpleasant, sarcastic self is thinking, ‘Why no ! Let’s just let him show up to NOBODY, and he can see my list of people who can drag me around the state -right there in front of him’. But I was nice. Sorta. I just said that would be fine. End of conversation.

I’ll see my regular doc on Monday, and ask her for a referral to someone who doesn’t do cross-country surgery. I’m sure there are plenty to choose from. And dad will be happy to lug me around here in town whenever it’s scheduled. 🙂