Tag Archives: Cancer

Injury time out

Could it be that my right shoulder ache (through the joint and into the traps) was from yesterday’s workout? Or could it be from today’s adventure on the tractor, cutting the jungle of a yard we now have after two feet of rain from Debby strolling through the northern part of the state here? Anyone who has visited the ranch knows that this place had two kinds of “soil” when we bought the property: white sand and hardpack clay. I’ve spent quite a lot of time rehabbing the soil, but there are still areas of the clay here and there that is just like rolling along concrete. Worse, it’s terribly bumpy. All newer riding mowers/tractors have a contact under the seat. If you raise your butt out of the seat while it’s running, it will shut off as a safety feature. Today, while traveling over one particularly bad area to get some mowing done when it was a balmy 99 degrees outside, I got bounced so badly that it yanked the steering wheel – and thus my right arm – in a bad way, and also bounced me off the seat enough that it almost shut down the entire thing. In any case, both my left hip and my right shoulder have hurt like hell this afternoon and evening, which also means a workout was out of the question.

Instead, I’ve been working on business stuff and had a nap earlier to try to catch up on a bit of the sleep I lost while we had houseguests here. It’s probably better that there was no workout today, since I have scans tomorrow as followups to ensure there are no ghosts still lurking in my machine. That would be good news, and if all goes well, perhaps we’ll be able to move along to yearly scans and doctor visits instead of the every six months schedule we’re on right now. That would be a welcome thing indeed.

Doctors, doctors, everywhere

Dentist yesterday – two more rebuilt teeth to give them a little more life. Eye doc today – to check the clouding in one eye, and to learn that one of the major problems is that the right eye is too damn good at 20/15 while the left is at 20/20, and the left is my dominate eye. ENT next week – to deal with ice pick pain in one ear, rampant spasms, and a cough I can’t shake. I can think of very few months over the last few years where I haven’t visited some doctor’s office for something or other. There’s a bit of consistency to it all, I must say, even though some visits (dentist, ENT) can be moderately to very painful given the stress on my jaws from trying to open widely enough so they can get in there and do what needs to be done. I’m hoping to have more and more doc-free months as we go along, really. There are too many things that need to be done around here.

The numbers don’t lie

Finally, getting together with my doctor’s office for the results on the blood work I had done. I swear, it’s impossible to reach them, or they don’t call back. Much as I love my doctor, I think I’ll be finding another one just to avoid having to deal with his staff.

In any case, all the good stuff is low, and the bad stuff is high. Low B12, low iron, high total cholesterol, high bad cholesterol, high liver enzymes, etc.  Apparently the B12 is so low they want me to come in for an injection for the next two weeks, and then take a supplement. That low level, and the iron low level would certainly explain the constant fatigue, though, so it’s a good thing we did the testing. They want me to take drugs for the cholesterol (nope) and no more tylenol or anything with acetaminophen due to the liver issue. The worst of it all is the lecturing from my mother and the planning by her and my sister without me about what to do about me. It’s a conspiracy!

Taking the day off

Not by choice. The past few days I’ve felt decidedly unwell: dizzy, nauseated, massive headache, arms feel heavy and weak at the same time, etc. Not the flu – I get a flu shot every year now given all the cancer nonsense and the fact that my white blood cell count is not back to normal after all this time (and probably never will be). Seems like a case of RC. Random Crap. Hopefully it will get out of here soon so I can get back to doing the things that need to get done before the season really starts.

More lessons in how not to do things

The Susan G Komen Foundaton continues its Hindenburg-esque disaster campaign.

Today, they’ve issued this press release. I’ve inserted some translations.

“We want to apologize to the American public for recent decisions that cast doubt upon our commitment to our mission of saving women’s lives.”

Translation: We’re sorry we didn’t realize that the vast majority of people are not beholden to far right wing ideology.

“The events of this week have been deeply unsettling for our supporters, partners and friends and all of us at Susan G. Komen. We have been distressed at the presumption that the changes made to our funding criteria were done for political reasons or to specifically penalize Planned Parenthood. They were not.”

Translation: We hoped that no one would notice that our changes to our funding criteria initially only affected a single organization out of all of those who receive monies. The additional of the prohibition against distributing monies to researchers who use stem cells was just a bonus we tossed in later to appease our most shrill ideologues. And now we’re scared shitless that the money we usually get from individuals and corporations will no longer be coming in.

“Our original desire was to fulfill our fiduciary duty to our donors by not funding grant applications made by organizations under investigation. We will amend the criteria to make clear that disqualifying investigations must be criminal and conclusive in nature and not political. That is what is right and fair.”

Translation: We’re sorry we got caught trying to cut off funding to an organization undergoing a political witch hunt led by antiabortion people who think Planned Parenthood is some kind of baby killing factory instead of an organization that primarily provides other services. We’re still not defunding Penn State, who is under an actual criminal investigation, though.

“Our only goal for our granting process is to support women and families in the fight against breast cancer. Amending our criteria will ensure that politics has no place in our grant process. We will continue to fund existing grants, including those of Planned Parenthood, and preserve their eligibility to apply for future grants, while maintaining the ability of our affiliates to make funding decisions that meet the needs of their communities.”

Translation: Just like we said, the existing grants will be honored. Planned Parenthood is welcome to try and wring money from our greedy hands next time around, but we guarantee those requests will be denied for publicly stated reasons other than the real one: we’re cravenly desirous of the support from the right wing horde, and our VP Karen Handel has voiced her intent to defund Planned Parenthood.

“It is our hope and we believe it is time for everyone involved to pause, slow down and reflect on how grants can most effectively and directly be administered without controversies that hurt the cause of women. We urge everyone who has participated in this conversation across the country over the last few days to help us move past this issue. We do not want our mission marred or affected by politics – anyone’s politics.”

Translation: Our decision was wholly a political one, but if you say so, it’s you that has the problem.

“Starting this afternoon, we will have calls with our network and key supporters to refocus our attention on our mission and get back to doing our work. We ask for the public’s understanding and patience as we gather our Komen affiliates from around the country to determine how to move forward in the best interests of the women and people we serve.”

Translation: We’re hoping the upper echelon will continue to be able to collect their gigantic paychecks.

“We extend our deepest thanks for the outpouring of support we have received from so many in the past few days and we sincerely hope that these changes will be welcomed by those who have expressed their concern.”

Translation: We’re still deleting negative comments from our Facebook page as quickly as we possibly can.

Nothing has changed. This wishy-washy release doesn’t actually address anything that was not already in place: the existing grants will still be given. Future grants will be nonexistent. The SGKF will continue to play politics and cater to their far right wing. That’s the way of it, and the brand has been damaged beyond repair at this point, since the antiabortion people who have no reading comprehension skills are just as mad now as the people who lambasted SGKF for the decision in the first place. The latest release makes them look even more spineless than before.

I came across the financials for the SGKF and they are underwhelming in terms of the ratio of dollars spent on research, screening, and prevention versus overhead. It’s an abysmal ratio, in fact, and simply one more reason (among many, now that more and more is becoming known about them) to bypass the SGKF and donate to organizations who put the money to better use.

Some never learn

I posted previously about the asinine decision by the Susan G Komen (SGK) foundation to drop grants for Planned Parenthood. I’ve posted previously about the Dervaes and how they managed to destroy their goodwill and reputation in the span of about 24 hours. It seems that some people, so intent as they are of bending everyone else to their will – even when it’s clear that such moves are deeply unpopular and (to put it plainly) just damn stupid – cannot seem to learn a simple lesson: your business and brand are important things, and screwing around with them in a fashion that is destined to fail whatever core values you claim to hold can take the business or brand down so low that it likely will never recover. This is not the olden days when most things simply were not newsworthy enough on a national scale to warrant mention on Cronkite’s newscast. This is the Internet age. It’s difficult to keep anything a secret, and virtually impossible to not people talk about major actions you are taking. SGK, in a furtherance of its insane decision to lead where the whackjobs lead, under its new policy will no longer fund any cancer research that involves the use of embryonic stem cells.

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.


For those of us with trismus – mine from radiation and eating through a tube for nine months – oral issues are a huge and ongoing problem. For those of us with damaged salivary glands due to radiation, limited oral openings make necessary dental visits both excruciating and frustrating. Add to this the general annoyance of not being able to open the mouth, which creates issues with speech (and of course, missing part of the tongue does not help here), eating, and at times, breathing, and you have a bundle of problems that could very well make someone spiral into depression. It’s very hard to reverse trismus, according to Those In The Know, and there is no surgical repair for it – something that never fails to amaze me, given that there seem to be fixes for just about everything these days. My own dentist is quite skeptical that my extremely limited opening will improve, regardless of therapy.


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.

Advice for oral cancer patients

It’s apparently pretty much inevitable that if you don’t have your teeth pulled prior to surgery/radiation/chemo that you’ll end up losing them/having them pulled at some point down the road, based on everything I’ve read, heard, seen, and experienced. So, a bit of advice both very specific to this and for general purposes: make sure you’re keeping your mouth opening as free as possible during treatment. No one really stressed this to me when I was going through treatment, and between the radiation itself and the disuse since I was eating through a tube directly in my stomach for nine months, the increasing closure, scarring, and atrophy snuck up and suddenly my opening was a mere 12 mm. Go get a ruler and see how tiny that is – or better yet, take your thumb and put it in your mouth. I can’t do that without it taking a bit of effort to jam my thumb in and scraping it on my upper and lower incisors.

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.

What I did on my non-vacation weekend

I worked. I cooked. Worked. Cooked. The usual.

I wasn’t feeling quite well over the weekend, and today still do not feel as well as I did last weekend. I’m not quite sick now that whatever minor sinus infection I had cleared itself out, but also not quite feeling a hundred percent. Generally, I blame this on the fact that I’ve had far too many doctor/hospital visits, and there are simply too many sick people in those places. Fortunately, I’m done with the doctors until November unless something comes up, since the last visit to the pulmonologist this past week gave me an all clear after an xray followup to track that nasty fluid buildup to make sure it was fully drained. But like I said, hanging around in hospitals and offices brings with it the potential for random bugs to crop up, and I’m guessing that’s what this nonsense is.

On the plus side, I cooked, a lot, this weekend. Today is mom’s birthday (happy birthday, Mom!), and we just had a small dinner for immediate family Saturday night: my sister was down from Georgia, my brothers both up from Orlando, and my other sister and I. Saturday night: classic steakhouse dinner, with steak (grass-fed, organic, no less), shrimp three ways (boiled, scampi, and asian-inspired), baked potatoes, corn, bruschetta (I made two loaves of Italian bread, and by the end of the night, both were gone). Sunday morning, as is his habit, my brother made breakfast, and people went about their business for awhile before returning for a day of football. The football food: roasted red pepper soup, guacamole, more bruschetta (and two more loaves of Italian bread), roasted sweet potatoes and carrots from the Lazy Dog Ranch garden, and two chickens that had been brined in a honey-pepper mixture and then smoked for about four hours (plus a fresh batch of bbq sauce). I also made some cherry-chocolate-toasted almond ice cream for those who like that sort of thing. The youngest brother also assembled an eggplant parmigian after I fried off the eggplant slices, and one of my sisters made sauce, since my sisters were bugging him to make it.

We watched the Dolphins take a win against the Vikings, and turned off the Jaguars game in disgust after the Chargers reached the 30-point mark. The battle of the Mannings was not all together that interesting as the Colts put the beatdown on the Giants, but that is what younger brothers are for, as everyone who has a younger brother knows.

Overall, a very nice weekend indeed. The weather is not yet modulating into fall for us here, even though some mornings have dipped near the 60 degree mark. This is actually a good thing in my book, as my seedlings in the flats will go out into the garden in the coming weeks, hopefully to give us some good output now that the captain is back in the game and not having another chunk of something cut out. I could use about five degrees of cooler weather in order to get the fall snow pea round started. Out in the frames directly, I put in a round of limas, snap beans, carrots, cukes, leeks, beets, broccoli, cauliflower, and cowpeas. We’ll see how they do in what can still be some brutal heat, with no rain and only the standard watering. If I can stay healthy, with no more nasty surprises coming up to kick me in the ass, and I’m able to hold the bugs at bay, I’m hoping to get some kind of decent production out of this season yet.

Bugs, redux

The problem with spending quite a bit of time in doctors’ offices and hospitals is that these places are more often than not filled with sick people. While this is not entirely surprising – after all, how often do well people go to the doctor or visit a hospital unless they’re visiting someone or working there? – it is rather annoying for those of us who are otherwise healthy but are susceptible, thanks to being blasted with radiation and chemicals, to picking up bugs from various places in their travels.

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.