Having cancer

I had a spontaneous pneumothorax last August/September and after walking around for about 2 weeks with a completely collapsed lung (I thought I had sprained my shoulder) ended up going the surgical road that sounds exactly like what you are describing. The surgery and immediate recovery were basically painless for me, they do give you this little device (looks more like a child’s toy) to help re-inflate the lung. Basically you blow into to raise a ball up to a certain level for a certain period of time. Do be careful when they take out the drainage tube as it can let some air back into the cavity and partially collapse the lung again, it happened to me but luckily it fixes itself. Also as a FYI cleaning the bandages for the first couple of weeks after the hospital can be a bit disgusting.

The hardest part for me has been the near consistent chest pain I’ve had since being off of pain killers (about two weeks after surgery). This is pretty typical for this type of surgery as the nerves get aggravated. It has gotten better over time, dropping from what felt like constant bee stings to slight pinching. It’s particularly noticeable when twisting your body or reaching across your chest.

I’m from DC and can say that from my research the thoracic surgeon’s in the area are great, I am really grateful I went through with it. Best of luck! As someone who has recently gone through this process let me know if there are any questions I can answer.

All the best for a smooth op, Tin and Ms Wisdom!

Thanks all. We’re sitting in pre-op right now. Ray, my wife was very appreciative that you posted your experience.

I hope everything went well! I was on a epidural morphine drip so I had a pretty painless pre-op experience, but I only remember bits and pieces of the first night after.

Quick status:

tl;dr: everything went as planned; wife in great shape.

As I mentioned upthread, what they needed to do was to “glue” the lung to the thoracic cavity (the inside of your rib-cage). In a healthy person, your lung is kind of naturally stuck on there, albeit loosely. If you are prone to pneumothorax incidents, then the outer lining of the lung comes un-stuck from the thoracic cavity and some air gets in between, preventing it from re-sticking. This can be fixed naturally where the air is re-absorbed and the two surfaces re-stick, or through surgery with actual staples, some medical “glue”, or sometimes with medical-grade talcum powder. This surgeon doesn’t like to use artificial objects, and instead pretty much rips some of the lining off of the inner the thoracic cavity. As that damage heals, it forms scar-tissue which bonds with the outside lining of the lung, forming a permanent bond between them.

They do all this with a “thoracoscopic” technique where they pierce the cavity with two small holes: one for the camera and one for a hideous-looking device with multiple terrifying attachments of blades, scrapers, drills, and spikes. This “minimally invasive” technique is apparently a fairly rare and new discipline, only used in a few hospitals around the country - in most they would have cut a four to six-inch gash under the lowest rib and inserted the (same) tools upwards through there.

So she went under the knife about 1:30 or so and was out by 4.

The surgeon came to see us and brought pictures (which I will post when I get the soft-copies). They say that true beauty is on the inside… this is not true for my wife: she is far more attractive on the outside. The pictures show the exterior of her lung and the thoracic cavity, with a couple close-up shots of the spot where the hole in her lung was, them cutting that section out, them stripping a layer of “skin” off of the thoracic wall, and then a shot of a second, unpopped, blister on the lower portion of the lung which they also excised. Really very cool stuff if you’re not squeamish about seeing ooky body parts.

So yeah, the surgery went fine. I have a bit of a man-crush on Ms. Wisdom’s surgeon - the guy is fantastic. Young; handsome; energetic; communicates well; great sense of humor. I kind of wish I were gay. And that he were gay too, I suppose.

This surgeon (and thus the Fairfax Thoracic Surgery Department, which he heads) has a “tough-love” philosophy. Because the purpose of the surgery is for the scarring to glue the lung and rib-wall together, the doctor forbids the patient from taking an anti-inflammatory medication… like Motrin or Advil. And because they want the patient to take deep breaths to keep the lung as inflated as possible during recovery, he forbids the use of narcotics (opiates like morphine, oxycodone etc.). This is because narcotics relax the patient, inducing deep sleep and causing them to breathe shallowly. “Guppy breaths”, he calls them.

So my wife is allows to have Tylenol and… that’s about it. “I can provide you a bullet to bite on, if you think it will help,” the surgeon said, somewhat unhelpfully.

Moreover, they want the patient to be as active as possible as soon after surgery as possible. Within an hour after she got to post-op, they forced Ms. Wisdom to walk 250 feet, just to get her to breathe deeply. Before she went to bed last night they made her walk ten “laps” around the ward… which probably equated to a about a half-mile. Today, they will make her do 35 laps over the course of the day. This should not be a problem for my wife, who typically hit the gym every day in addition to our mile-long dog walks, but I doubt it will be a lot of fun, dragging along the chest-tube box.

When I left her late last night she was tired but not in much pain. She cranked out the ten laps with ease, chatting with me about the GOP debate the whole while. Sadly, she was still probably benefiting from the “nerve block” that they had done around the lung so the full-force of the pain may or may not have been hitting her; I suspect that she won’t be quite as comfortable this morning when I go to see her.

She does have a chest-tube again, which is just that: a tube connected to a slight suction feed in the wall which is preventing any air from getting in between the lung and thoracic cavity. It is connected to a light plastic “atrium” case with a liquid seal that prevents any outside air from getting back in and infecting her chest cavity when the suction is disconnected for her walks. It was this tube that got all fouled and twisted in her previous hospital stay, and needless to say I am watching the thing like a hawk this time… but I don’t have a lot of fear with this hospital: they are FAR more on their game than the other place.

So she will be there at least one more night. I suspect she’ll be released tomorrow, but there is a chance she’ll be there through Monday.

As an aside - and back to the main focus of the thread - they also found a couple small growths on the inner-lining of the thoracic cavity.

Obviously, the immediate worry was that these were cancerous. Because the purpose of the surgery was to scrape off the thoracic lining (the “plenum”), they removed these growths and sent them to pathology. The quick-and-dirty tests indicate that they were NOT cancer… and were probably related to the endometriosis that my wife suffered from when she was younger. They will also run some more thorough tests to confirm.

According the the surgeon, they see a correlation between endometriosis and “spontaneous pneumothorax”, which is what we’re dealing with here. The mechanism between what is typically a uterine-only condition and the lungs is not clear. The body is a weird and mysterious place. It’s also yucky. Especially women’s bodies.

Glad to hear things are looking good so far, Mr. Wisdom. Give my best to your wife while she recovers.

Nice to see everything went smoothly!!! Yay for good doctors.

And please, keep that sense of humor up!

Yet another status… a lot of weird things have been happening in the past month, but I’ve not really had the time or inclination to post.

Weird Rashes

First, some unexpected complications from the lung surgery detailed a few posts up. A few days after the lung surgery, Ms. Wisdom returned home and everything appeared to be OK for a day of so. But then, she began to develop a really odd rash. It was confined to her torso and it was very VERY clearly limited to the right side of her body: there was an extremely clear line right at the bilateral “seam” from the bottom of her sternum through her belly-button and down another couple inches. And it wasn’t exactly “itchy” as much as a burning sensation whenever something (like clothing) touched it.

We called the lung surgeon and sent him some cell-phone images, and he was pretty much at a loss. When it didn’t get better after a couple of days, we went to see our general practitioner and we also had an appointment with the plastic surgeon, so we asked both of them about it. This was kind of low-level scary for me because a very clear bilateral division like that could imply a neurological problem (you know, the old canard that the left side of your brain controls the right-side functions, etc.) which of course leads me down the dreaded “brain cancer” road.

Well, it turns out it wasn’t that. What appears to have happened is that my wife has developed an allergy to latex (maybe) or sterile glue (maybe) or medical iodine (maybe) or all of the above. When they did the lung surgery, they sterilized her side with some iodine stuff and then covered her with an adhesive sheet of latex cloth that stuck to her skin. Since they were operating on her right side, they had her turned onto her side and the cloth and sterilizing goo was only applied to her right side… thus the clean straight line of the rash.

Adding to the problem, they injected a nerve blocking agent into the tissue around the ribs where they did the incisions. That’s great, but apparently they hit the nerve dead-on with the injection… and this causes some long-term (meaning three to six weeks) “discomfort”. In this case, that discomfort comes in the form of feeling like your side is on fire. Ms. Wisdom describes it as the feeling your get after your foot falls asleep and you restore blood-flow to it - kind of a hot, prickly feeling. Except this is never-ending. Apparently this happens in about 3% of the cases: the anesthetist is trying to get as close to the nerve as they can, and sometimes they hit it; most times they don’t. My wife is “lucky” like that.

Leaky Expanders

Because of the painful rash and even more painful nerve thing, Ms. Wisdom pretty much couldn’t stand to wear any shirt or blouses around the house, which is of course just fine. Honestly, it’s been a couple of the best weeks of my life, but that’s neither here nor there.

However, a few days after the lung surgery, we noticed that one of her breasts (or rather, the saline-filled expander under her pectoral muscle) was getting smaller. There followed a number of highly-scientific tests in which I carefully examined the offending mammary with visual and tactile inspection. And yeah, it was definitely smaller and not as “inflated” as the other one.

So, we called up the plastic surgeon and went in the next morning. Long story short: there’s a pinhole leak.

How did THIS happen? They don’t know. It’s on the other side of her body from where the lung surgery was done and there are no incisions or punctures anywhere. It’s just got a slow leak.

My personal theory is that the dozens of near-daily x-rays that my wife went through during her couple hospital stays degraded the polymer that the expanders are made from. High-energy radiation breaks down plastics pretty fast, and x-rays are pretty far up there on the scale - I believe that the repeated blasts of x-rays probably weakened one of the seals around the injection ports and the saline inside seeped out.

Whenever I voice this opinion to the medical folks, they kind of look at me like they’re not sure whether or not to take me seriously or not. That’s fine.

Anyway, the slow leak was not dangerous. The liquid in the expanders is just saline, and Ms. Wisdom’s body would quickly and easily absorb it as it came out. The solution (no pun intended) was to re-fill the thing every couple of days. This meant more injections (we thought we were done) and more time off from work for me, and more discomfort (slight this time) for my long-suffering wife.

They also moved up the date of the prosthetic surgery. More on that later.

Lawsuits

We’d been feeling out a couple lawyers to talk about the horrific treatment that Ms. Wisdom received at the hospital she was admitted to after her (first) collapsed lung. To review, they inserted three separate chest tubes, a couple of which failed due to poor procedures and what I consider neglectful care. She was in the hospital for weeks (over Christmas!) when she probably should have been there for no more than two days.

My thought was that the excessive expense of the hospital stay combined with the time that I had to take off of work, more time off for Ms. Wisdom and the general crappiness of the care might mean that I had a decent case. I had hoped to recoup some of the nearly $30K I’ve spent on medical expenses this year (the majority of which were associated with the hospital stay).

Well, it doesn’t look like it. We spoke to a couple lawyers, and it seems like these cases are not quite as easy to bring as the media and anecdotal evidence would lead us to believe. Basically, you have to prove long-term harm, which means months and months of issues directly caused by a doctor’s or hospital’s actions. A crappy experience or a mistake made by a doctor or nurse doesn’t pass muster, even if it caused a couple of weeks of issues for me and mine. The worst we can point to is a couple of unnecessary scars and a huge medical bill… most of which was picked up by insurance.

Both lawyers said that there was a chance we would prevail, but odds are that even if we won the legal fees would exceed the award. Complicating matters, the county that I live in - though politically fairly liberal - tends to produce juries that favor the hospitals over patients.

So that’s probably that. A bit disappointing, but I feel better having looked into it.

Next up: New Boobs!

Man, what a journey for you two, Tin. Particularly blows about the lawsuit–I thought this great country of ours was founded on principles of constant and successful litigation :(

In any case, sounds like you and the missus are both real troopers. Best of luck going forward!

Tin’s got an incredibly good attitude in the face of all this bullshit, and it is heartening to read it. That kind of attitude is one of the best things you can have when facing tough crap. All the best.

Tin, as ever, your wife and you are handling this in a truly admirable way. Huge amount of respect for what you’ve been doing, and how.

Yeah, it’s easy to forget what a trying time it is for you guys. You’re just projecting sun and rainbows so well I keep forgetting how you’re actually talking about something negative. You’re a damn role model. I hope I can be as positive as you when this shit inevitably comes up in my family.

So, hang in there and keep on doing what you’re doing!

I probably should have mentioned the rash thing. When I had the same procedure I developed/found-out-I-had a low level allergy to the adhesive they used which created what sounds like the same type of rash. Watch out for the nerve pain! Unless you are careful it is very easy to bother the nerves and basically start from scratch in terms of the pain going away. I still have some low level nerve pain across the “nipple line” because I helped a friend move and aggravated the nerves again.

OK, because of the leaky expander, they moved up Ms. Wisdom’s prosthetic surgery. It was supposed to be mid-April, but they moved some folks around and got us in last Friday (Good Friday).

On Pink Attire

So obviously, this whole thing has taught me a great deal about breast cancer, and especially the politics around it. Believe it or not, all the money that the Koman Foundation and similar groups bring in associated with making NFL teams wear pink or the various events set up at high schools actually do a great deal for women suffering or recovering from these types of cancer. The support and… I guess I could call them “perks”… are pretty impressive and probably folks like Tom didn’t see a similar support structure for other types of cancer.

One of the biggest things that the Koman-like groups did was to force Congress into passing a law that says that insurance companies MUST pay for reconstructive surgery related to breast cancer. That was back in the Clinton presidency, and it’s worth noting that a couple of the bills that attempted to kill Obamacare ALSO had clauses that stripped out this provision. The insurance companies REALLY hate that they have to pay for this, as it’s not strictly medically necessary.

Tough tacos, I say.

Gummi-Boobs

The new generation of breast implants are semi-solid. Instead of being kind of round bags of silicon or saline that we’ve all seen demonstrated in various high-quality movies over the years, the new ones are made of silicon gel, and are about the consistency of gummi-bears. They are also shaped to fill in (or fill out) the missing tissue.

Ms. Wisdom has always been a B-cup, and not even a full one. She has typically worn a padded bra to make herself a little curvier. She liked how she looked just after our kids were born and she was breast-feeding, but even then she kind of daydreamed about being a C-cup. I am not the greatest husband on the planet, but this is one area where I have never failed: whenever she would make a comment like that, my response has always been a look of mild surprise and a statement something along the lines of “Really? I suppose that would be fine, but your figure is incredible right now…” Cheesy? Sure. But I’m still married to a woman who could have done FAR better than me.

But anyway, she now getting “free” plastic surgery, so she decided to upgrade to a C-cup. I - obviously - support such a decision.

Liposuction

A few weeks before, the plastic surgeon mentioned that because of all the breast tissue that was removed in the mastectomy, there would be “hollow” spots that the prosthetics wouldn’t fill in. To soften these “divots”, the surgeon would remove some fat cells from my wife’s waist and inject that fat into the hollows.

Now obviously, this is kind of exciting, right? Not only is Ms. Wisdom getting bigger boobs, but also at least a partial liposuction.

So we’re in for our pre-op interview a couple days before, and my wife is trying to figure out what the extent of the liposuction is going to be. She’s a woman who is in great shape but she’s also had two kids and she’s 46 so there’s some flab around the middle that no amount of time in the gym is going to get rid of. On the drive to the surgeon’s office, she sounded me out about maybe paying for a “full” liposuction while the surgeon has her on the table anyway.

Like I’m going to refuse her something like that.

So we sounded the assistant doctor out about it. Hey, you’ve got the surgery suite booked, they’re doing some liposuction anyway, how much extra would it cost to just do the whole megillah? The assistant kind of hems and haws and suggests that maybe a different procedure might be better and even cost less, but says that she’ll check with the pricing person and ask the surgeon.

A couple minutes later, the surgeon comes in, gives my wife an up-and-down glance, and asks her to lie back for an examination. A few minutes of prodding her belly and squeezing around her belly-button follow.

She then pretty much announces that most of of what my wife thinks is belly-fat is actually just flabby muscle. In order to fill in the divots in the breasts, she’ll pretty much have to take 90% of the actual fat out of the belly anyway, so our question is moot. Quit bothering her assistant about stuff like that.

Now… I am not entirely sure what happened there. With most other doctors, I would have probably concluded that the surgeon was kind of winking at us and basically providing a little extra pro-bono plastic surgery. But this particular surgeon doesn’t seem to be all that subtle… I’m sort of inclined to take her at her word.

Another Surgery

Having my wife go under general anesthetic is becoming disturbingly routine. But it was pretty routine. Over in a couple hours; a few more hours in Recovery; then I drove her home.

This is all soft-tissue work, and basically the primary goal after such surgery is near-constant pressure on the affected area to prevent bruising and swelling. So Ms. Wisdom was wrapped in bandages and then stuffed into a compression jacket and a massive girdle-like contraption.

The weekend passed fairly uneventfully. The liposuction was the painful part, apparently. They basically ripped a layer of flesh out between my wife’s abs and the skin, so she has a hard time doing anything that involves the abdominal muscles, like… sitting, walking, breathing, eating, or talking.

I got to be nursemaid again, which I find to be a lot of fun. Mostly, that involved a lot of sitting around next to her and reading a book, whereas on most weekends like that I would be doing yardwork. Every once in a while I get to help her to the bathroom and get her a drink of water. Tough life.

You Can’t Be Too Busty or Too Thin

Monday we went to the plastic surgeon’s for the Grand Unveiling. They took off all the wraps and the dressing and Ms. Wisdom got to see her new body… which turned out to be kind of jaundiced yellow with lots of angry purple bruises and some unsightly swelling in odd places.

Basically, my wife was disappointed. Her stomach didn’t look any flatter, she’s lumpy, and she thinks her boobs are weird-looking.

Now of course she’s being silly. Her stomach appears to be unchanged because it’s still swollen and angry from the surgery. It will only get better from here. She’s lumpy because (as they explained) about 50% of the fat that they transplant from the belly to the breasts will just be metabolized by the body before new blood vessels can be created to sustain the tissue. So, the plastic surgeons “over-fill” the divots with twice as much fat. This too shall pass.

The only thing left is her new breasts, which she’s kind of having second thoughts about. I don’t hold myself up to be any kind of expert, but my amateur observations of the female torso have been fairly extensive over nearly a half-century’s worth of constant study. And I think the new ones look great. I think my wife was expecting her previous “shape” to just be scaled up, but that’s not what she actually asked for - she said that she wanted the cleavage and fullness that she never had before. And that’s what they gave her. She’s just not used to it.

I offered to illustrate that her new breasts were not unusual by showing her some short instructional videos I found on the Internet, but - once again - she declined. Ah well.

Anyway, that’s where we are. Hopefully that was the last surgery. Ms. Wisdom will probably be out of work for another couple of weeks while she heals, but we’re planning on going down to Wilmington, NC on Friday: my daughter will be playing her first D1 tournament this weekend, and we’re going to be staying at a cute little B&B in the historic downtown area. Hopefully she’ll be recovered enough that the long drive won’t hurt her too badly.

Honestly, I need to shift into high gear here regarding my OWN health. The last four months or so I’ve been so focused on driving around and being a care-giver that I haven’t been doing the bike-commute as often as I should, I haven’t been eating as well as I ought to, and I’ve gained about ten pounds.

Now the summer is almost here and I’m pastier and pudgier than I ought to be at this time of year. And I find myself with a busty, thin wife who is swearing that after this cancer scare, she wants to get outdoors and carpe some diem. I gotta up my game.

Tin, reading your posts about your trials – and victories – invariably makes me smile. You’re an amazing writer. Thanks for sharing this with the rest of us!

Thanks for the great write-up Tin. I’m lucky enough not to be in a situation like yours, but if I ever end up in one, I honestly hope I can go through it with the same awesome attitude and good humour you are showing here.

Having said that, and not knowing you at all so feeling kind of out of place for saying this, but saying it anyway: I do hope you do have the time and the place and the friends to deal with the worries and sorrow you don’t show here, but probably do feel underneath. No matter how positive you are, these are still trying times, and I would hate it if in staying positive you forgot to give that a place and suffer for it later.

Go carpe some diem indeed!

Yeah, kudos Tin in the way you are writing up about all these experiences, i’m sure it is an invaluable source for others also going through the same nightmares. And in general the very personal nature of this thread and what it details, well let’s just say i’m always deeply impressed by the candour and bravery of those having to go through all this. My thoughts and those of my family are always with you guys and pushing positivity in your direction.

Well, I sure do appreciate everyone’s good vibes, and I find myself writing these things as a form of therapy, so I am thankful that you put up with these semi-narcissistic posts.

It’s not all rainbows and unicorns, obviously. Each time something goes south it adds to the stress, and I guess about once every ten or twelve days my wife just kind of breaks down and I kinda awkwardly try and figure out what a real human would say to a weeping woman.

Last night was one of those times - she got her electronic paycheck and found out that somewhere along the line the county’s HR department hadn’t gotten the word that she was still on short-term disability… which meant that she wasn’t paid at all for last month. That’s not the end of the world: we can survive on my paycheck alone if we’re careful and I’m fairly confident that it’s a mix-up that can be rectified with a few exasperating phone calls. But it was yet another dollop of crap on my wife’s shit-sandwich.

So again, I just kind of sit there and make some comforting noises, you know? I can’t even hug her because every inch of her torso is a big bruise. No fun.

But I am confident that this weekend will help out a lot - she’ll see her daughter, we’ll visit the ocean, and we’ll spend some time in a nice old house. I’ll find her some unicorns if I have to hunt them down and strangle them myself.

Yeah, these belong in a collection of stories or something, Mr. Wisdon. It’s not narcissism (semi or otherwise) when it’s this entertaining.

-Tom