Sleep Studies ... Junk Science? Who Cares? I've Been in Remission 4 Years!!!

Let me just say how really annoying it is to have to switch to a different web browser just to write a blog. Really? Get it together Internet Explorer. Until then, Mozilla is my home. I digress ...

I have a lot to say so I'll do my best to convey the proper emotions in my Reader's Digest version of events. To quote Inigo Montoya, "Let me 'splain. No, there is too much ... Let me sum up." For those you don't know who or what I'm referring to, shame on you. A perfect 80's reference and you missed it. Now go look it up while we wait ...

First and foremost, today is a big day for me. Today, I have been cancer free and in remission for four years!!! Woot!! It's been a long journey thus far and I'm sure the road won't be any smoother in the future. Not because I fear I'll get sick again - even though I do. No, because what I didn't know until having gone through it is that half the battle is in the getting better. The other half is staying well. There is a lot involved in staying well. Way more than you could ever realize. Anyone getting over a major illness knows exactly what I'm talking about. Don't misunderstand, I'd rather be on this side of the fence. I'm very grateful for everyday I'm given and will gladly pay everything I have to stay well. I'm just merely pointing out that your journey doesn't stop once the illness is gone.

I know an alarming amount of people who right now at this very moment are going through their own health struggles. I don't want to name anyone by name, but you people know who you are. I just want to encourage each of you to stay the course and stay strong. Don't let your illness get the better of you. My thoughts and prayers are with each of you.

Now on to the sleep study. Or should I say studies. They made me have two. Ugh! I would like to formally lodge my complaint and go on record saying that I think (just me - my opinion only) that sleep studies are junk science. Not for any other reason but that if a person can't sleep in a controlled environment like the one I was in, then what the heck are they studying? If they called them sleepLESS studies then I might be more inclined to get on board.

I had this long, drawn out diatribe on the subject, but have since decided to cut it down to only a few paragraphs. You can thank my mother for that one.

Like I said last time, I know a good portion of you reading this have had a sleep study and as a result probably have a CPAP machine and you love it. I'm happy for you, but for me the sentiment is not the same.

For those who have never had a sleep study, dig this:

This is what you  have hooked up to you in order for them to do a sleep study (the wires not the guy). This picture does not even give you a full spectrum of what you're hooked up to either. You don't see the wires hooked up to the legs or the chest or all over the back and top of the head or the one behind your ears. Nor do you see the mic that is wired to the throat. Or the CPAP Machine.

Regardless, there I was with a mess of crap hooked up to me and I'm told I had to go to sleep at 9:30 p.m. There is a camera in the room to watch me, an open mic in the room to hear me and a motion detection device that I'm not even sure what that is for. My next thought, "Wow. Freaky freaks watching me sleep." Think about it. If you were watching someone sleep anywhere else you'd be arrested, but some how in a "sleep clinic" it's legal? Nah, I'm not buying it.

I was uncomfortable, not the least bit tired and the guy says, "Lights out. And by the way, you need to start out sleeping on your back."

Whoa! Hold on there Babaloo! I don't sleep on my back. I never sleep on my back because it makes my back hurt. A hurt back makes Kathy a mean person. To be fair, I know this about myself - THAT'S WHY I DON'T SLEEP ON MY BACK. I tried to gingerly point this out but he wasn't hearing it.

He flipped out the lights, went to his freaka - monitoring - station and the study supposedly began. Except that he kept coming in every stinking 20 mins. and kept pulling the monitor leads off my body and putting down new ones. He did this several times. Enough that I wanted so badly to ask him if he'd ever done this before.

Two hours later as he was fixing yet something else, he asked me, "Do you often have bouts of restless sleep like this?"

Really? I mean did he just ask me that? I must say it's at this point that my sarcastic nature came out. I did pretty well up until that point. I replied, "Well let me think. I don't often have a hundred wires stuck to me in various places all over my body, let alone a camera that watches every move I make, a motion detector doing who knows what, an open mic that listens to every sound I make, an unreasonable bed time, no TV, lying flat on my back that is now screaming for a pain killer all the while some random dude comes in and out of my bedroom doing stuff to the wires on my face and legs. So no, I don't think this is a typical night for me."

This seemed to have stunned him. He then told me I could lay on my side if I wanted to. It was a shame that my back hurt so bad at that point I couldn't move.

Going through it once was bad enough, going through it twice was just crazy. The result was me having to have a CPAP machine. I stopped breathing 14.5 times in an hour which is mild to moderate. But I ask, how can you stop breathing .5 times? You either breathe or you don't. 

I've been using the CPAP for about 2 1/2 weeks now. There hasn't been a single night that I haven't ripped the thing off my face 2 or 3times and/or felt as if I was going to suffocate wearing it. Isn't that like the opposite of it's desired effect? I hate it and think it's of the devil. Mojo doesn't think much of it either. The first night I had it on and he jumped on the bed was classic. If cats could speak human, he would have said, "What the *obscene cat expletive* is that thing eating your face off?" I had to laugh but then that made me choke because you shouldn't open your mouth with a CPAP on. Really. Don't do it. I wished that I had had a camera handy though, because he looked a lot like this:

I hope that I'll eventually get used to the CPAP or that's a bunch of wasted time and money the ENT made me waste for not even coming close to helping me with the issue I went to see him for. I'm going to ask for a new ENT. I don't like Dr. I'm Not Listening to your issues. He's had two chances. I can't mess around and not have this sinus pressure thing taken care of.

But today, he's off the hook, because today marks my 4th year Remission Anniversary. Next year, I'm throwing myself a big party. Mark your calendars because you're probably invited!

Love to you all!

- Kat

1Peter 5:7

Doctors & Mechanics

Have you ever taken your car in the shop for some mysterious noise you hear every time you drive it only to get it to the mechanics and while they have it they can’t find any issue or the problem doesn’t replicate itself? It’s frustrating as … well it’s frustrating.

That kind of is happening to me with all these doctor's appointments. I went in to the ENT to have Bogie checked out, got sent here (Oncologist), there (Hospital) and everywhere (back to Oncologist). Then got sent back to the ENT for a completely different issue (nasal polyps), only to be told that the polyps probably aren’t causing any issues with my sinuses and breathing. (Note – I said polyps using the plural form.) So now, I’m being sent somewhere else to have a sleep study done, because he (the ENT) thinks that maybe the problem is my throat – not that he looked in my throat or anything mind you. I fail to see how any problem my throat might or might not have can possibly cause sinus pressure in my head. Now I’m no doctor, but that doesn’t make sense to me.

Regardless, for the last month and a half I’ve been migraine free. Yea! … until yesterday. As I was leaving the ENT’s office a migraine hit. I kid you not. Fortunately I had someone with me that could drive. Point being, in the office – nothing. Out of the office – migraine. Then this morning when getting up I blew my nose and all I got was blood. I didn’t have a nosebleed. I just had blood in the mucus. I’m not trying to be disgusting folks, just trying to make the car analogy more relevant.

To be fair, I took Excedrin Migraine yesterday when I got home from the doctor’s office and it has aspirin in it. I have an allergy to aspirin. It’s not severe, but I have had it every since I can remember. This next statement is a common fact and I didn’t look it up on WebMD (see 2 posts ago) … Aspirin allergies can cause nosebleeds (which is why I don’t take it very often) and it can also irritate nasal polyps. So that’s three strikes for me.

Now back to the PLURAL nasal polyps. I don’t have one. I have two. Both in my cheeks or thereabouts. The ENT said that nasal polyps are normal, non-cancerous and more people than you realize have them and don’t know it. As a matter of fact, I bet half of you reading this have at least one nasal polyp. Of course, half of you reading this are from or live in the Ohio Valley, so really that was an easy guess. He said he didn’t think that they were causing me any distress, but he still wanted to look at some older scans to see if he can determine how long I’ve had them. He’s working that out with the hospital.

In the meantime, I have to have a sleep study. This is one of the main reasons why I have avoided going to an ENT in the first place. I don’t want to have a sleep study. Don’t misunderstand, I know many people who have had to go through sleep studies and as a result were given CPAP Machines to help them sleep better and/or to keep them breathing through the night. Most people love their CPAPs and I think it’s awesome that it helps those people. But I don’t feel like my problem has anything to do with that. Not saying I wouldn’t benefit from it, I just don’t think that’s the problem. Again, I’m not a doctor, but you know when your body is trying to tell you something. I’ve done my very best to interpret that “something” to various doctors and I feel like I’m going in circles or at the very least my car is in the shop and the mechanic can’t find anything wrong. Oh and don’t forget the big whopping charge you get every time the mechanic hooks your car up to the thingy that does the diagnostics. Yeah, that’s me and the all the doctor’s visits.

Maybe I just need to move to Arizona or New Mexico. Sure it’s like 500° in the summer, but it’s a dry heat. Yeah, I risk spontaneous combustion with heat like that, but if I could breathe while I’m combusting then that seems like a fair trade off. Of course, Mojo wouldn’t like the move so alas I’m stuck with the Ohio Valley and crappy sinuses and allergies. I love my home state of Kentucky, I just wish that the climate was more like Irvine, CA where they think 65° is a cold front and 80° is a heat wave. I just said that last part for my friend Karolyn’s benefit. Wooooooooooooo!

I’ll keep you posted as The Saga of the Ghastly Gasping unfolds. Or maybe it’s The Ballad of Bad Breathing. Whatever.

Peace Out,

Kat

1 Peter 5:7

Scan Results Revealed ...

It's amazing what can happen in just two weeks. A lot has happened, but to spare those sitting on the edge of their seats for the results of my scans I'll keep you from the wait and agony I've had to go through. I'm fine ... well as fine as I'll ever be.

The scan showed no abnormalities in any lymph nodes. I'm still cancer free!!!

Bogie is a lymph node that is associated with my parotid gland. And just so none of you will WebMD what that is (see last post), the parotid gland is a salivary gland. I asked the doctor why it looks like a soccer ball is sitting behind my jaw if there is nothing to worry about. She said and I quote, "Because that's the way God made you and it doesn't look like a soccer ball." Her words, not mine. That being said, she also indicated that the tissue surrounding Bogie might be pressing on him and making him more noticeable, but I presently have nothing to worry about concerning the lymph nodes and/or any infection. I do have to keep an eye on Bogie but for now all's good. I thank God for this news and feel like the weight of the world is off my shoulders. Leslie – looks like you were right. Bogie will be with me for a very long time and I can live with that.

However, the scan did show that I have cyst in my sinus cavity. Like that's surprising. I've only been saying that for the last 4 years and I do live in Kentucky. We don't call it the Ohio Valley crud for nothing. Let's face it, my sinuses are crap. At least I now have medical proof. My next course of action is to take a CD of the scans to my ENT and let him figure out what to do about this sinus thing. My sincere hope is that the ENT can get rid of this cyst. While I don't really relish the idea of somebody sticking something up my nose for a cyst removal, I'd gladly take surgery over the panic I feel every time I lay down and I can't breathe or the pressure in my head and face every time I bend over or the migraines I suffer from constantly over the last four years.

Yes, I'd risk surgery to breathe normally again, but that's jumping the gun. This may be controlled through medicine. Either way, I'm getting excited by the prospect that FINALLY something might be done.

It makes me smile to know I was right all along. I mean it doesn't take a genius to figure out if you can breathe or not. Of course, even now as I sit here expressing my optimism, my sinuses are closing up in rebellion. My ears are clogged and ringing and my face feels like it's going to explode. They taunt me ... especially when I lay down. Logic dictates that if you can't breathe through your nose, you breathe through your mouth, but panic often overrides logic and once panic sets in I have to sit straight up and gasp for air or I feel like I'll suffocate. So yes, I'm very optimistic and one step closer to a solution. And big bonus ... NO CANCER!!!! I'm doing the "Kathy Dance" and before you ask no video footage of said dance will be released.

A big thanks to all of you who expressed your concern and love over the past two weeks. You are such a blessing to me and I am a fortunate person to have each of you in my life. I praise God for giving me such a loving family and wonderful friends. Without you, I would not have survived this wait – at least not with my hair in tact.

Love to you all,

Kat
1 Peter 5:7

There's A Bogie in Sector 7G

Not much has happened since the last time I posted. As a matter of fact, I had a six month check-up with the oncologists in January. There was nothing, I mean absolutely nothing of significant interest to convey to you. I couldn’t even make something up in my overactive imagination to even entertain the masses. Everything was normal. Except for the whole superior vena cava thing. And the neuropathy in my toes. And the migraines.

So these past six months I’ve been walking along and looking up at the clouds and seeing the silver lining. You know, the problem with looking up when you’re walking is that eventually, you’re gonna stumble and fall, walk into a pole or wall or at the very least, trip over the crack in the sidewalk.

That happened to me yesterday. I was happily looking up at the silver lining, when BAM … right into the pole. Of course, I picked myself up, dusted myself off and looked back to the clouds and noticed that my silver lining needed some Tarn-X. I hate Tarn-X. It works like mad crazy, but stinks like rotten eggs on the bayou. Point being, I don’t use it unless it is absolutely necessary.

Here’s what happened. I went in for another six month check-up with one of my oncologists. This one is the survivorship doctor. In order for you to get perspective, I need to tell you the back story. Because with me, there is always a back story …

When I was first diagnosed with cancer, before I was even assigned an oncologist, I noticed a small lump behind my jaw, under my ear lobe. Very small, but big enough that I asked the surgeon about it. He looked at it and poked it a few times then hemmed and hawed and decided that it was most likely a swollen salivary gland and that it was nothing to worry about. His exact words were, “Don’t worry about it. You’re getting ready to undergo months of chemotherapy and most likely radiation after that. If it were something to worry about, it won’t be in six or seven months.”

I took him at his word.

After the all the chemo and the radiation the lump, which I shall now refer to as Lumphrey Bogart, or Bogie for short, was still there. However, all my blood tests, CT Scans and PET Scans were normal. I felt it just must be a swollen salivary gland like the surgeon had said. I was declared to be in remission so I figured there was nothing to worry about. So I didn’t.

Fast forward three and a half years of normal blood tests, check-ups, scans and x-rays to about two months ago and I noticed that Bogie was getting a little bit big for his britches. Now I like Bogie. I mean we are connected. We are close. I take him everywhere I go, but the fact remains that he is growing. So that made me think why would he be growing? Do salivary glands grow? Not knowing that answer I Googled the location of all the salivary glands to do a little light reading on the subject. The first thing that popped up in the search was a 3D rendering of the location of the salivary glands. I thought wow this is exactly what I’m looking for. I clicked on the picture and shoot-fire if it wasn’t linked to the Mayo Clinic.

 I know I should have looked first, but I got duped and sucked in by the cool 3Dness of the picture. If there is one thing I’ve learned through all the cancer stuff, it’s that you should never look up a medical issue on the Mayo Clinic or WebMD sites or any sites like that. All you’re going to get is a list of possible problems and most of them being the worst case scenario which makes people freak out and run to the doctor’s office with what they self-diagnosed as utterly preposterous issues and most likely not even remotely related to the actual problem. Try looking up a lower back ache on WebMD’s symptom checker. I just did this to prove my point.  I do have frequent lower back pain and I have been to the doctor for it. But for the purposes of this discussion I checked lower back pain, went through the series of questions and the following list are the possible issues: 

Cauda Equina Syndrome	Muscle Strain	Degenerative Disc Disease
Lumbar (low back) Strain	Acute Kidney Failure	Fibromyalgia
Lumbar (low back) Herniated Disk	Osteomyelitis (Bone Infection)	Osteoporosis
Vertebral Compression Fracture (Lumbar)	Kidney Stones	Ankylosing Spondylitis
Bone Spurs	Broken (fractured) Low Back Vertebra	Broken (fractured) Shoulder Blade
Cervicitis	Dermatomyositis	Endometriosis
Helicobacter Pylori Infection	Hydronephrosis	Kidney Infection (Pyelonephritis)
Lumbar Spinal Stenosis	Miscariage	Ovarian Cysts
Pelvic Inflammatory Disease	Prementrual Syndrome (PMS)	Prolpsed Bladder
Prolapsed Embolism	Ulcerative Colitis	Uterine Fibroids
Vertebral Compression Fracture (Thoracic)	Aoritc Aneurysm (Abdomen)	Shingles (Herpes Zoster)
Spinal Tumor	Tick Bite	Endocarditis
Renal Cell (Kidney) Cancer

You know what the doctor says is the reason for my back pain? I’m overweight, I have a bulging disc and like my father, I have degenerative disc disorder. Only one of those symptoms was listed as a possibility on WebMD. I’m not saying WebMD won’t come up with the right issue, but I’m saying that you can’t get a proper perspective when you have 37 possible outcomes, most of which are really major medical issues. This is why if you have a problem, you go to the doctor. Once the doctor gives you the answer, then and only then, should you look it up on the web and then only from credible and reputable websites.

I know I just chased a rabbit, but I can’t stress this enough. STOP TRYING TO SELF DIAGNOSE!!!

That being said, after I had a total freak out about all the issues that could be the problem. I actually went to my general practitioner and let him be the one to tell what Bogie’s issue was. He gave me “that” look. The same look I got when I resembled Quasimodo and had a tumor sitting on a nerve in my shoulder. It’s not a comforting look to say the least.

However, being a great doctor, he was honest and said he didn’t know and decided to run a few blood tests and send me off to an ENT. The blood tests came back all within normal ranges. This news made me feel better.

The ENT was nice enough, but he poked and prodded poor Bogie until I thought he was going to make Bogie mad, but to Bogie’s credit he took it in stride. The ENT measured Bogie and said, “Well if it hasn’t gotten any bigger than this in the last four years, it’s probably something you’ll go to your grave with.”

That did not make me feel better. As a matter of fact that was a bit general and it could have gone either way. So my response, which I felt was a reasonable one, was, “Ok. That’s fine, but are you talking about me going to my grave 40 years from now or 40 days?”

He responded, “Meh.”

Really? Meh? That’s hardly comforting. I mean, I know we aren’t promised tomorrow, but dang. He then said that he didn’t think it was anything to worry about, but he would wait to look at some older scans from my oncologist. That made me feel better.

This all brings me to yesterday when I had my check up with one of the oncologists. I tried very hard to stress that the ENT doesn’t seem to think it’s an issue. She looked Bogie over, poked around and measured him and said, “CT Scan. We need to do one. It may be nothing, but I don’t like it. Lay down.” That did not make me feel better.

I didn’t even get to say anything before she was pulling the leg extender out from the examining table and lightly pushing me back. She pressed hard on my stomach a few times and asked if anything hurt. I told her nothing was hurting and she said I could sit up. Once I sat back up she said, “CT Scan of your stomach and legs too.” That made me feel even worse. I think I actually winced when she said that.

I said, “What?! Why?! What do you know?!”

She smiled and said in a not so reassuring voice, “Nothing,” then sent me off to have my blood work.

Now do you see why I’m a total hypochondriac? Regardless, I’m scheduled for two CT Scans next week and then the week after I have a follow-up visit with the oncologist. So now I’m in a hurry up and wait mode once again. I’m doing my best to be all “glass half full” and not worry about it until they tell me I have something to worry about, but always in the back of the mind is that nagging feeling that there could be something wrong and that Bogie has turned on me.

I’ll keep you posted with the outcome of the tests. You’ll know what I know when I know it.

-Kat

1 Peter 5:7