So, just how is caving in to the rabid right wing working out for SGK? Not. Very. Well. At. All. Directors are resigning. The organization’s own top public health official resigned in protest. Various affiliates are ignoring this directive and will continue funding Planned Parenthood. The corporate partners are going to be figuring out just how much they want to be involved in this.

What is highly ironic about this is just days before SGK decided that the poor and uninsured shouldn’t be permitted to use Planned Parenthood to get cancer screenings and referrals for mammograms, they posted this to their Facebook page:

“The CDC released a new study today that marks improvement in some minority cancer screening rates, but big gaps remain for the poor and uninsured.”

So, obviously, the proper response to this sort of study is to pull grants a couple of days later from an organization that bridges the gap in cancer screening for the poor and uninsured.

SGK, you may be in full damage control mode now, but you have irrevocably damaged your brand. Trying out a new line, like this one

“Our Board of Directors approved new grants standards to improve direct services to women, says Komen Founder and CEO Amb. Nancy G. Brinker. Money is not being “withdrawn” from Planned Parenthood – will be invested in programs to serve low-income, uninsured and underinsured women.”

is disingenuous at best, and at worst, is completely dishonest. Planned Parenthood already has the infrastructure in place to service the poor and uninsured. It is WHY THEY ARE FUNDED. In fact, it’s why someone at SGK presumably approved this text as recently as last year.

‎”And while Komen Affiliates provide funds to pay for screening, education and treatment programs in dozens of communities, in some areas, the only place that poor, uninsured or under-insured women can receive these services are through programs run by Planned Parenthood.”

Because of your craven need to adhere to strict right wing ideology, where it will never be enough until everything about a woman’s control over her own body is restricted, you are now finding out just how misguided that vision is. People in general are much more moderate than that. They, unlike the people supporting this decision, do not quote discredited “studies” like those linking abortion to breast cancer, or the “not intended to be a factual statement” that what Planned Parenthood does is “97% abortions”. The fact that your most shrill supporters are using these sorts of things to applaud your actions speaks volumes to those of us with more brain cells than that and more compassion for those less fortunate.

I’ve been through cancer. Twice. Once without insurance. Once with. It’s much, much better with insurance, but I’d be dead today if I hadn’t been able to afford the initial steps that caught the first cancer – only to be tossed out on my own with a “Yep, you’ve got cancer.” by the doctor who did the original biopsy, because I had no insurance. I was fortunate enough to find other medical professionals who worried less about how I was going to pay for something, what I looked like, what I did for a living, or anything else, and more about how to get me to the other side. That is exactly how I view Planned Parenthood and their cancer screenings, and why, no matter what SGK does from here out, I will never contribute in any way to that organization. I will encourage anyone I know who donates to likewise give to an organization less concerned with the appeasing the right wing and more concerned with actual caring.

You’ve burned your bridges with me and a lot of other people. Maybe now someone will look at why your actual outlay of funds for research (low) to your overhead (high) is as it is. That would be something: maybe your corporate sponsors will decide not to fund you because you’re under investigation.

However.

People who know me know that I just don’t give up that easily. Besides, as an athlete – former or not – I’m well aware that muscles not used will atrophy, and that surgeries (and radiation) will create massive scar tissue. I’m well aware that it takes ongoing, strenuous, and dedicated work to make such things better. That’s just what I’ve been doing.

I have a device called a Therabite, which I have been using as regularly as possible. I had to skip two days after a visit to my ENT, as his exam caused the corners of my mouth to split open (not his fault, he has to wiggle a finger in to feel my tongue), but other than that, I’ve been using it every day to try to passively stretch my jaws. The best measure of progress? I can now slide my thumb into my mouth, horizontally, up to the first knuckle, without the pad of my thumb touching my teeth, something I could not do previously. It may only be a matter of millimeters for me, but that’s the best that can be expected after six years past the end of treatment, and just under six from the point where I was able to have the feeding tube removed and eat via mouth again. One millimeter at a time.

If you’re a head and neck cancer patient, and you stumbled across this place via search, remember this: while I think the medical staff I had was absolutely terrific, I wish they had emphasized more the issues surrounding trismus and how vitally important it is to avoid or at least minimize the impact. If you, like me, are unable to eat by mouth, continue to open and close your mouth as if you were able. Do it as often as possible while going through treatment and while having the PEG in. Not having to worry about this one thing will pay off down the road, trust me. It will probably be painful. Do it anyway. You probably have pain meds from the doctor because of all the other painful issues that arise from treatment. Use them if you need them. Without practice, trismus will sneak up and be on you before you know it. And you don’t want that.

It will be painful to keep the stretching going while also going through radiation because of the burns, and because the treatments sucks the life out of you, you won’t want to, but do it anyway (and heck, the docs will prescribe painkillers anyway). The alternative is to try to deal with it after the fact, either by using stacks of tongue depressors – not fun, very inconvenient, and not terribly effective – or by use of a passive stretching device, like the Dynasplint or Therabite. I tried the former, but sent it back during my fun-filled summer of surgery for a spot of lung cancer and the subsequent recovery. I have since picked up a Therabite, which has some pros and cons. The biggest con is that while the Dynasplint can be used hands-free with the balancing rods, the Therabite really can’t if your teeth are not in the greatest shape or have been weakened from the radiation and resultant xerostomia, as it’s a bit front-heavy. The Dynasplint also has a screw-like setting and hinged mouthpieces that allow you to set a particular stretch setting and still get the mouthpiece in and out without losing that setting. The Therabite unit is manual, which means you can go overboard and try to do too much at one time, but it is lightweight (plastic), and still has a gauge on the lever, although without a mirror or someone else to assist, you won’t be able to see the gauge. Since I work almost exclusively from home, it’s easier for me to use either device as often as I wish – right now, given the rate my teeth are falling out/having to be pulled and the fact that I need to be able to open far enough to get dentures in, very often every day – than it would be for someone who works in a traditional office, but the Therabite has a carrying case and as mentioned, is lightweight.

My single largest issue with both is the mouthpiece pads. While I liked the Dynasplint hands-free ability, because I could not open my mouth widely enough to get the thing in my mouth with both pads on the mouthpieces, I could only put one pad on the top, while leaving the bottom plain plastic. This led to the device swinging left and right if I moved my head, to the point where in one instance, the entire thing almost came out of my mouth. I can just barely get the Therabite in my mouth with both upper and lower pads on the mouthpiece, and this is actually a good stretch without even squeezing the lever at all.

The number one pro the Therabite has on Dynasplint is cost. The Dynasplint is a leased device, and because my insurance company would not pick up the cost, completely out of pocket to me, month after month, regardless of whether or not I was using it. The Therabite I actually picked up via Amazon, for about four hundred dollars – about one and a half months of a lease on the Dynasplint.

Of course, most or all of this could have been avoided if it had been made vitally clear the combined effects of radiation and lack of use on the jaws. The limited opening makes eating painful and difficult (and eventually, may make eating off-putting altogether), dental work more painful and difficult than it is already, followup exams with the ENT painful and difficult, and so on and on. It also presents issues with other medical procedures that may require intubation – like going under the knife to remove a wedge of a lung, for instance. Luckily, all of the medical staff have been able to work with me to get things done, but sometimes late at night when I’m trying to get to sleep and I have a spasm roll through my neck, my throat gets tight and I wonder if, in the event of a real emergency that required something be done in my mouth or throat, whoever was attempting to treat me would be able to do so.

So there is my advice: keep stretching those jaws even if you’re not eating real food for the duration, and even if the burns from the radiation make it painful at the time. You’ll be glad you did when it’s all over.

Such is the case on the ranch, where yours truly has a typical case of the flu or a cold or something, resulting in an amazing amount of snot being blown out of my head.

Speaking of amazing amounts of stuff: this week, a return visit to the pulmonologist, for a followup xray to make sure that massive amount of fluid they drained out of the left lung last week remains at bay. It does, although there is still a bit of hazy “pneumonia-like stuff” hanging out at the bottom of the left lung. Do we know what it is and why it’s there? No. Do we want to preemptively treat it with antibiotics or anything? I voted no, and the doctor concurred. In two weeks we’ll have a followup xray to see what progress the body can make on its own.

On another note, I got to see the xrays and scans from before and after he drained the fluid. I have to say, it was one of the most incredible things I’ve seen on a scan, and more than a little scary: my left lung was pushed almost to the point of collapse by the sheer amount of fluid, and the CT scan results, when rolled back and forth like a film, are rather awesome in demonstrating just what medical technology has the ability to do (of course, I am a great fan of technology in general and medical technology in particular, because hey, it has saved my life rather spectacularly, twice, in the span of five years). When viewed as a film, the CT scan results, working from the top of the lung downward, show a massive black space where the fluid has displaced the lung – a bit of 2001: A Space Odyssey, minus the stars bit, because there was absolutely nothing there but a huge amount of (thankfully benign) fluid.

Right now, although my head is stuffed to the point where I want to chop it off, breathing deeply no longer is the agony it has been, and is getting better daily. A slight twinge here and there, but overall, recovery is back on track. The other day I went out for about 20 minutes or so and actually worked in the garden by chopping off some of the giant okra fingers that were threatening to topple some of the plants. All of those went into compost, as they were inedible – some had dried on the stem, the seeds rattling around in the now zebra-striped pods as I cut and tossed them.

I’ve decided to try another round of tomatoes, as a last hurrah to the season. I’ve also decided that instead of starting other things in flats, they’re just going to head straight for sowing in the frames. Since Earl is not going to pass closely enough to our coast to bring us any weather, and the daily rains appear to have moved along, there is no real danger at this point of the seeds being washed out or the soil staying wet so long so as to cause the seeds to rot in place. That means the broccoli, cauliflower, and other assorted goodies will be directly sowed at some hopefully short time in the future – but after we go through another week of 95-degree weather here, according to our forecast. Summer does not want to let go its grip, and who can blame it, really? Summer, to me, is the very best of seasons.

After the surgery, I’d still been having those same symptoms. The PET scan showed fluid in the left lung (but all clear of any cancerous bits on the right, including a questionable lymph node near the trachea that the thoracic surgeon removed while removing the wedge fro the right lung). OK, we thought, a little fluid. That would jibe with what we figured, and would explain a lot. Another visit with the pulmonologist, amazingly set up very quickly for yesterday.

Now, I’m thinking, a touch of pneumonia. That means drugs, come back in 10 days after the cycle is complete. But as usual, it turned out to be far more complicated, given that I’m trying to squeeze more medical-related visits and procedures into these past five years than I’d ever had in all the previous years of my life combined. And I must say, that’s working out pretty well, so I have that going for me.

The pulmonologist thumped around on my back on both sides, and said you definitely have some fluid in there. I’d like to go ahead and drain it right now. This is not something I’ve ever had done before, so yet another brand new experience in dealing with cancer and all the assorted bullshit that goes with it. Fine, I say, we might as well get it over with. I figure it will be fairly quick.

To his credit, the doctor did warn me it might be painful as the fluid drained and the lung reexpanded. In addition, there was likely some inflammation in the lining, so as the fluid drained out, the inflamed tissue rubbing together would probably be very painful, at least for awhile.

The nurse brought in the tools – new word learned: thoracentesis! – along with a liter bottle and several test tubes. Keep in mind that a liter is just over a quart. This will be important later. They numbed up an area slightly below my left shoulder blade and a bit toward the spine, set a drape over me, and then….punched a hole in my back between a couple of ribs. Once into the fluid-filled area, they inserted a catheter, attached a tube, and started draining. I myself was sitting, leaning on a pillow over a table next to the exam table. Obviously I couldn’t see any of this going on. But boy, I felt it.

It’s a strange feeling to have liquid quite literally being pulled out of the body. From time to time I could feel bubbling as the fluid was outbound. It kept going on and on, and I really started to wonder: just how much fluid was he pulling out, anyway? To make things worse, the longer it went on, the more painful, internally, it became, and eventually, I was panting like a dog, and sweating profusely. The nurse brought in some cold towels, put one on my neck and started wiping my face down with another. At the point where I gasped, “I think I’m going to pass out.”, we went on for another minute or so, and then stopped. They pulled the catheter, slapped a bandage on, and when I sat up, the resulting pain was about as intense a pain I’ve ever felt. Combine that with an inability to breathe normally, and you have the makings of a panic attack, really.

Luckily, I told myself I wasn’t dying, and we managed to get me into a semi-reclined position to relax for a few minutes. It was then that I saw how much fluid they’d pulled out. The three test tubes were full, which I expected. What I did not expect was to see the entire liter bottle was also full, to the very top. Even if we hadn’t had to stop because of the pain, we’d had to have stopped because there was nothing else to hold more fluid.

The fluid was sent off to the lab, and I was sent off for a chest xray (which looked good – he said that was about 98% of the fluid, gone) and then a CT scan with contrast (for those of you who have been through this, you know that delightful feeling that you’re about to piss yourself that comes when they release the contrast into your system). The CT scan results we don’t have, but I have a followup appointment next week, at which point we’ll do another xray before talking to the doctor, to see where we stand.

The pain is still with me, although subsiding, slowly. The area where they punched a hole in my back is quite painful, but what can you expect after having a puncture wound deliberately introduced?

Today, a visit with the oncologist to go over the PET scan results with him, and to plot our course from here. That will likely just be a return to quarterly scans to make sure we’re still all clear.

And this is one of the ironies of my life, really. I have a device to help passively stretch my jaws. Using it involves placing it between the frontmost upper and lower teeth. In the past three months, I’ve been through scans, biopsies, surgeries, a week in the hospital, recovery time at home in pain, then getting a bit better, then taking a downturn with massive pain on the left side (not the side on which the surgery was done), then managing to use the device for a couple of days, then having the tooth start to fall apart, which led to so much pain that once again, the device was put aside. So, I need to be able to use the device before the eventuality that all my teeth are pulled so I’ll be able to get fitted for fake teeth. Yet, I cannot use it because my teeth insist on falling apart at a rate that grows faster and faster as time passes. One would think they’d have a way to treat this in a better manner, given everything that is known about trismus and what happens when it isn’t stressed enough to a head and neck cancer patient that keeping the jaw muscles active (even though typically, you’re eating through a tube for a great while) is vital.

In other news, I had a PET scan on Tuesday. I was expecting results by the end of the week, but remarkably enough, the radiation oncologist called the very next day with results: the stuff that needed to come out on the right side was all collected, and it looks clear. What does not look clear is the left lung, which shows fluid. Being the nice guy he is, he called the radiologist to have them pull the previous scans and xray from before surgery, and wouldn’t you know it: fluid in the left lung. It appears that walking pneumonia may very well be a valid side diagnosis to all this cancer business after all.

And that brings me to my personal hell week. Next week, an appointment with the oncologist, to go over the PET scan and to plot a course of action (likely: quarterly scans to keep an eye on me, since they don’t know what else to do with me since I insist on being different). An appointment with the pulmonologist, to talk about this fluid on the left side, and figure out a course of action for that (likely: a base, post-surgery xray, with a followup in a couple of weeks, which leaves me with more time to cough and get short of breath from time to time). A visit with my accountant, to tell me that I need to write a check. And also a possibility, an appointment with a nutrionist, given my weight loss in the hospital that took me down to about 100 pounds, and my inability to get more weight on even though it seems like I am constantly shoving food down my piehole – and, to add to the fun, I seem to be bouncing between 98 and 100. If I lose any more weight, the chances of having to have a feeding tube put back in increases, and quite frankly, remembering that particular experience from last time, this is not something I want to do again.

And so we go, moving from one thing to another, dealing once more with the aftereffects of another cancer diagnosis that should not have happened. The garden is almost entirely a lost cause, but what did I spy the other day when taking a brief foray out? Eggplants! Black, shiny eggplants, hanging on the plants that have managed to survive brutal, incessant heat and brutal, damaging storms that roll through here and there. The okra continues to be a scary, vibrant presence that needs harvesting in the worst way. The second round of peanuts have come up, and the way the weather looks, it will be warm enough into December that they will have maximum growth. I have yet to start any flats for fall because it simply continues to be much too hot to plant those things out by the time they would be ready to graduate. Overall, the season has been lost, again. But another season does approach, albeit slowly, and I’m looking forward to it.

Our next step, after meeting up with the radiation oncologist who developed the treatment plan for the first episode, is another PET scan. A baseline, if you will, of the state of my system,  post-surgery, to make sure that everything that needed to be cut out was cut out, and that no other hot spots appear. That will be next week, and I have to say that I’m not looking forward to it. Not because the procedure itself is scary or painful, but because you can’t eat anything for a period before the test. During my week in the hospital, I lost about eight pounds, leaving me tipping the scale dial right at about a hundred pounds. Trying to maintain that, much less put anything back on, is a daily struggle, and the way a healing body burns through calories, not eating for at least eight hours is going to be a tough road to take, and the end result will be a queasy and cranky Captain. I plan to stuff a cooler in the car with something to immediately boost my blood sugar as soon as the test is finished and they turn me loose.

The week after that, back to the oncologist, as the results of the PET will be back by then, and at least we’ll have something concrete there to look at and see where we stand.

Recovery continues, slowly. Weight maintenance/gain is the single largest issue right now, followed closely by range of motion/strength rebuilding in the affected area. I have this nasty dry cough thing going on, which aggravates every muscle they cut through during surgery, along with the ribs they spread apart to get a good view of the lung. Try coughing without involving any abdominal or back muscle. Doesn’t work very well. On the plus side, I’m not coughing up any blood, and it’s probably related to the fact that I spend the vast majority of my time inside in the air conditioning rather than splitting my time between being inside and being in the great outdoors. It’s simply too hot and humid right now to be outside doing anything much of consequence other than stepping out from time to time, as it’s difficult to breathe the heavy, humid, still air without starting to gasp like a fish unceremoniously dumped out of the bowl. Since our fall won’t arrive for a couple of months yet, the most I can hope for is periodic trips outside without doing anything strenuous (like pull weeds) and that the weather modulates just a tad to something more bearable so I can start getting back outside here and there, even for a short walk around the gardens that are going to hell.