Posted by: bluepinegrove | December 3, 2011

Dive Horn

My last hyperbaric treatment was last night, and I’m still elated. The hyperbaric center staff was so wonderful. They followed the center’s protocols to the letter, but with humor.  “Any medication patches, lotions, oils, greases, implants, hearing aids, new since yesterday? Any batteries, cell phones, rocket launchers?” They took the movie-watching seriously. Yesterday G even brought one of her personal DVDs for me to watch after we talked about a favorite actor. B watched my face behind the acrylic to see if I was enjoying the movie, and if my look was sour he’d pick up the phone and ask if I wanted to switch to something else. They gave me warmed blankets, as many as I wanted. Kind, compassionate people.

On my way out I was treated to a graduation ceremony. The doctor gave me a Certificate of Completion, a letter to present to other doctors if I should ever need surgery, and best of all, I got to sound two long blasts on a dive horn.  My doctor, an old submarine captain, shook my hand and wished me well. Good ship, sir.

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Posted by: bluepinegrove | December 1, 2011

Big toe about to touch the finish line

My last hyperbaric treatment is tomorrow. Friends, colleagues, my doctors, all want to know if it has “worked.” I honestly don’t know. I don’t want to let my doctor down by saying that I have this or that lingering symptom. During my last appointment, he looked so eager to hear a good report from me, but I had nothing definitive to offer. Well, only one thing: I’m not peeing blood.

The last 10 treatments are supposed to be where the magic happens, and in the last week I have certainly noticed a shift in my well being. I feel great! I have NO PAIN, not even in my ear. I am clear headed, focused, peppy, and optimistic. Healing has happened on a deep level, but without looking at the radiation-burnt tissues, it will be difficult to analyze. We’ll all know more as I make the rounds to see my urologist and my oncologist. Patience.

I wouldn’t say time has flown. These 40 treatments represent a huge commitment of time and hope. My hearing and eyesight have been compromised, I’ve been stressed about getting my work done, and I haven’t been able to leave town on a weekday. I suffered with ear pain for many weeks, and my distance vision, especially at night, is severely compromised. In fact, driving home this evening after treatment was truly frightening. I couldn’t quite tell if there were two or three sets of swirly cop car lights on the freeway just beyond my exit. Then my main surface street was blocked by more swirly lights and I had to pick my way through neighborhood streets and make a left turn against traffic (my normal route home is engineered so that no turning is required). Phew.

So I will arrange to get the tubes taken out of my eardrums and start healing those. And I will patiently wait for my eyes to normalize, and hope that I get to keep the wonderful near vision I have enjoyed.

And I will indulge in all the things I had to avoid while getting treatment. Estradiol patches! Deodorant! Skin cream! Perfume! Makeup! Jewelry (including my wedding ring)! I’m a gonna get a haircut and let the hairdresser put goop in my hair and I won’t wash it out! These indulgences my seem silly and superficial, but when told every single day that you can’t do them, it makes one obsess. One “graduating” patient apparently told the techs she would paint her toenails UP TO HER KNEES, thank you very much. I told the tech was going to spritz enough perfume to clear a room (I don’t care! I smell PRETTTTTTEEEEE. Wheeeee!!!)

Posted by: bluepinegrove | November 21, 2011

The Joy of Round Eyeballs

Before I started treatment my doctor warned that most patients experience vision changes during treatment. Don’t run out and get new glasses, he said. However, for a small percentage of patients, eyesight actually improves.  The changes, for better or for worse, are supposed to be temporary.

Blurry city lights

For once I made it into the right “small number of patients who experience” x. Lucky me! For the past two weeks I’ve experienced some improved eyesight. My glasses don’t work for me–in fact, they make my vision worse for the most part. I don’t wear them for meetings, sewing, or crocheting, but only for extended reading.

One of my eye issues is astigmatism, which is caused by eyeball pointiness. I believe the pressure of the hyperbaric chamber is pressing my eyes, as if they were clay, into their erstwhile round shape. I don’t know anything about eyeballs, so forgive the extremely unscientific description.  Whatever the cause, I’m enjoying stepping back a decade or more to a time when I didn’t need to wear glasses.

But with improvements in my close-up vision have come new deficiencies in my distance vistion. I’ve become  myopic, the opposite of my natural inclination. My distance vision is so blurry I can’t see my 6’4″ husband across the grocery store unless he waves both hands in the air.  I think this could be attributed to dry eyes. The 10% humidity in the oxygen chamber is quite desiccating. If I had realized this was going to happen, I would have begun using eye drops much sooner. The drops do seem to help with my visual acuity.

Driving home in the dark after treatments is pretty scary, but I do fine as long as I don’t stray from my usual route home. From my reading I’ve discovered that a small percentage of patients continue to experience improved eyesight after treatment. I’m holding out hope that I can be a member of that club.

Posted by: bluepinegrove | November 21, 2011

Code Blue

The main lobby of hospital where I go for my hyperbaric treatments looks like a lodge. It was inspired by Timberline Lodge, a destination dear to a Northwesterner’s heart, and is intended to ease the stress of illness and caregiving. The light is beautiful, the fire is always roaring, and sometimes music from the baby grand piano infuses the atmosphere.

David wakely

I go through this lobby on my way to and from the hyperbaric  center, and since my treatments are painless and infused with optimism, my anxiety about visiting the hospital has lessened considerably. It a bit like going to work.

But that beautiful lobby doesn’t fool me. No matter how much it invites one to settle it, take a load off, grab a moment of solace, the grand room can’t take away the raw business of the hospital: death.

I can’t view the lobby without thinking of the cancer diagnosis I received upstairs, or the surgery I had. I think of my dear friend Steve who also received his cancer diagnosis upstairs, and his brain surgery, and the days I spent with his posse rallying around him in his beautiful hospital room. The trauma for everyone was piping hot.

Everyone who boards the elevator to or from the lobby is riding toward trauma, from birthing babies to  brain cancer, and people are kind and soft. We acknowledge each other in a way that is sympathetic without prying. Compassion rules the holy elevator.

The other day as I left the hyperbaric center feeling light and airy, a loud but dulcet-toned message went out over the PA system. “Code blue in intensive care. Code blue in intensive care.” Someone crashing upstairs.

Someone won’t make it out of here alive. And the rest of us live our lives, we keep moving through the lobby. I feel the weight of the hospital floors above me, but I hold that stranger in my heart as I step into the elevator.

Posted by: bluepinegrove | October 28, 2011

Pink Noise

I learned yesterday that there’s a name for the sounds I hear inside the hyperbaric chamber: pink noise. Two hours of this, without movies, would drive me bonkers. Here’s a minute of it.

Another kind of pink noise has been blaring this month. I think I may have the pink ribbon blues. I may blot some of it out with some reading. Here are a couple of additions to my reading list.

Bright-Sided: How Positive Thinking Is Undermining AmericaPink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health

 

Barbara Ehrenreich was on NPR recently, talking about her cancer and about her aversion to forced positivity. All that pink-ribbon-and-teddy-bear stuff annoys her, and I for one am glad someone has so thoughtfully articulated this annoyance.  Though I have friends and family members affected by breast cancer, I’m too cynical to purchase pink-beribboned products. There has been an awful lot of corruption around this marketing ploy. However, like Ehrenreich, I have appreciated how pink ribbon-ers have contributed to raising the level of cancer awareness in our culture. I am very grateful that I don’t need to hide my cancer, that I can blog about it.

I know from participating in AIDS walks many years ago how powerful it feels to add to a large public demonstration of catastrophic private experiences. And I know how it feels to march with thousands to protest a war, even if it doesn’t have any immediate effect. Sometimes all one can do is stand up and yell, “Occupy THIS!”

Ehrenreich rejects the term “cancer survivor.” For her, the term is freighted with connotations of fighting and victory, and it implies that those who succumb to the disease are weak losers. Her interview made me feel guilty and a bit like a silly stereotype for using the warrior metaphor early during my cancer treatment. When I look back, though, I acknowledge that warrior-ship was a useful phase. It was the only way to handle the terror, and an effective way to focus. Despair was not practical. The battlefield, for me, was molecular.

And in my case, I didn’t feel that The System had anything to do with my cancer. I don’t feel it was caused by environmental corruption, but by a virus (and possibly a genetic marker). I had proper medical care, nobody did anything wrong when managing my precancerous condition. My cancer was treatable, and I chose to go for cure because it was an option. For that option, I’m very grateful.

Like Ehrenreich, I’ve been uncomfortable using the term “cancer survivor,” partially because I feel bad for those who didn’t have access to effective treatment, those who were killed by treatment, and those who were killed by cancer. And I don’t like the term because it implies that my relationship with cancer has ended. It hasn’t ended, and it never will. Every time my body does something peculiar, I’m back at the OhMyGodIt’sBack baseline.

My kind of cancer doesn’t have its own color of ribbon. If it did, would I wear it? Would it convey the full extent of damage wreaked upon me by cancer? Not possible. Would I wear it if I thought it would help someone else? Absolutely.

Posted by: bluepinegrove | October 17, 2011

What’s it like in there?

Six  treatments down, 34 to go. The insurance company just approved the second set of 20, thanks to the persistent educating efforts of my doctor. Forty is the optimal number of treatments, so I’m really glad I won’t have to stop short.

My ears and eustachian tubes are feeling closer to normal  now that the treatment-free weekend is coming to a close.  Sigh.

I have a tube buddy whose appointments are at the same time as mine.  She also is one of my oncologist’s patients, and she had the same cancer I did. She has had more than 20 hyperbaric treatments, and she told me that her ears have felt stuffy the entire time, but she didn’t need tubes installed.

She takes the chamber on the left, and I take the one on the right. Here’s the process of getting set up to go into the chamber. I get into scrubs in a dressing room, then pad into the tube room in my socks. I hang my locker key on a prong and go through the equivalent of an airport security check, complete with getting scanned with a metal detector wand. I get asked the same questions every day: Any new medications? Pacemaker? Drug patches? Batteries? etc. Each time I say, “I’m not packin’ today.”

I get on the gurney, take my socks off , and hand them to the attendant. He gives me a lanyard, which I hang around my neck. Then an air mask is attached to the lanyard and I take a big toke on it to make sure there’s no obstruction. I’m handed a big plastic mug of water with a big bendy straw, and the grounding band is fastened around my wrist. I get my pillows adjusted and put on two white cotton blankets, even though the chamber can get warm when coming up to compression level. Then the attendant swings the gurney around so my feet are facing the open chamber. There are rods under the bed that line up with grooves along the bottom of the chamber, like drawer runners. Once these are lined up, the attendant glides me in like a corpse at the morgue, and the very heavy door is closed and latched. On my first trip into the chamber I experienced a fleeting moment of panic as the door closed, but it passed instantly. Patients with claustrophobia can’t get this treatment.

The gas starts hissing into the chamber.  The attendant picks up a last-century black telephone handset to ask me every few minutes how I’m doing. The standard questions: How are your ears? Any pain in your sinuses, teeth, throat, eyes? In the chatting that ensues, we’re getting to know each other pretty well. He knows I’m a genealogist, and I know his ancestors were Swedish. He knows that I “believe in” global warming, and I know he thinks Al Gore is full of it. I also know that he idolizes the doctors who run the hyperbaric center.

In about 13 minutes I’m in 2.4 ATA, which means two atmospheres absolute, and I believe that’s around 28 psi. I don’t feel any changes, and it doesn’t feel different to breathe the 80% oxygen. Except that after awhile I start feeling mildly tingly and euphoric. Just when it starts getting good, I hear the attendant’s voice saying, “Time for an air break.” I then breathe through the mask to get outside air so I won’t get oxygen poisoning. I get two of these air breaks during the session.

I watch movies on the monitor above the hyperbaric chamber. So far the best choice was Be Kind, Rewind, which had me laughing out loud. I watched a documentary on the Irish diaspora, then followed that with Cinderella Man, about a New York boxer of Irish descent. Nothing like watching slo-mo boxing scenes right in yer face. Ugh.

When it’s time to decompress, the chamber gets really cold. About this time I become aware of a cold pit of hunger in my stomach. By the time I get to the dressing room I am ravenously hungry. They think this is caused by the metabolism speeding up under compression, and perhaps blood sugar gets low.

So far I’ve been really tired after the treatments, and I’ve been falling asleep between 8:30 and 9:30. We’ll see if this changes as time goes on. Pretty soon I’ll have another five treatments behind me.

Posted by: bluepinegrove | October 16, 2011

Stink o’ the world

Inside the hyperbaric chamber there is no scent, not even of myself. I breathe in purity itself, 80% scientific oxygen. Is this what makes dogs so crazy when their scent world gets covered with snow?

I don’t dwell on the olfactory nothingness, though, because I’m generally watching a movie on the screen just above the chamber. The nothingness makes itself more apparent when the treatment is over and the heavy chamber door opens. The real air that creeps in from the sterile hospital room smells like a delicious swamp, and I snap to attention like a hound. The first notes are the bass ones, fetid, damp, tinged with sadness. Quickly they are followed by middle notes of rose and violet. I’ve learned to anticipate those. The scent show ends almost immediately as I acclimate to the air, and within seconds I’m wearing Stink of the World eau de toilette.

Since my treatment two years ago I’ve cultivated some hedonistic interests to help me regain joy in my physical being. (This is not something to be taken for granted.) Recently I have become a perfumista. I read excellent blogs on perfumes, order samples of niche fragrances, and regularly troll perfume counters wherever I can find them.

The world of fragrance has changed since I last explored perfumes a dozen or so years ago. Scents are witty, subversive, narrative, foolish, blowsy–whatever a person could want as part of her physical envelope for the day. So when I get home after treatments I rush to my perfume treasure trove and fish for the perfect scent.

What does comfort smell like to you?

Posted by: bluepinegrove | October 14, 2011

Just what my mama gave me

Friends have asked what it’s like in the hyperbaric chamber, and if I can take books in with me. I can’t take in anything ‘cept what my mama gave me and 100 percent cotton scrubs (no velcro, eyelets, elastic, etc.).

Here’s a list of exclusions:

  • Ointments
  • Hairspray                             
  • Hair accessories
  • Hair gel or mousse
  • Books
  • Deodorant
  • Lotions
  • Makeup
  • Perfume
  • Cell phones
  • MP3 players
  • Jewelry
  • Underwear
  • Socks
  • Drug patches
  • Eyeglasses with titanium
  • Hard contact lenses
  • Petroleum-based products

The problem with all of these things is that they could cause a spark, create static electricity, or provide fuel in a flash fire. The attendant straps a grounding band around my wrist so that I myself don’t create static. Human bodies apparently are great fuel in that highly oxygenated environment.

When during my first consultation I learned that patients can only wear pure cotton scrubs, I thought I’d sew myself a special, ritualistic set in a special emblematic print. The doctor said I could, if I provided content labels and let him inspect them. So I went to the fabric store looking for a print that would represent oxygen, clouds, healing . . . but all that jumped out at me was a flame print. I considered it for a moment, since I regard fire imagery to represent powerful change.

Joann fabrics flame fabric

But I told the doc this would be too dark. Just too dark. And he agreed.

Posted by: bluepinegrove | October 14, 2011

How to turn any car into a Prius

When I got into my car to drive home after my eardrums got “tubed” the other day I could barely hear the car door slam shut. I couldn’t hear the car engine when I started the car. After making sure the car was really running I pulled out of the parking lot in quietude. The only car noise was the sound of the tires gripping the pavement. As I merged onto the freeway I had to depend on my speedometer to monitor my speed, rather than depending on engine sounds. This is what it’s like to drive a Prius, right?

I’m told that my “otic barotrauma” should clear in a few days. The earaches have diminished to an extremely mild level, but they’re still stuffed — lots of fluid behind my eardrums. The fluid is preventing my eardrums from moving, hence the temporary hearing loss.  From my reading, it appears that requiring a myringotomy and tubes constitutes “serious otitis.”

So when I returned to the hyperbaric center the next day, the doc looked in my ears, and said, “Awesome piercings, dude.” Not really. He said, “Ah, beautiful. Just perfect, everything’s just perfect. It’s always nice to see those tubes so well done.” I said that my sensations hadn’t changed, and he said that the eardrums were still bulging. He was surprised that the fluid doesn’t come through the tubes, but the ENT had hold me no, the fluid will just get reabsorbed. My doc was also surprised that the procedure hurts.

It sound innocuous enough, local anesthetic, no needles. The anesthetic is administered in the form of drops. The ENT warned me that the eardrum is extremely sensitive, and the drops hurt. He wasn’t kidding. The pain is intense, blinding, but it only lasts about a minute. Getting the eardrum pierced was not that horrible, and it’s one of the most discreet piercings you can get.

My doc also said there are hyperbaric centers where they tube everybody. This is so they can get more patients in and out faster. Not all hyperbaric centers have an attendant stay with the patient through the entire dive, either. Mind does. They are exceedingly kind.

So, third “dive” with piercing: Brava. No pain at all. Thirteen minutes to full compression level, rather than the hour it took the first two times.  Just a bit of ear crackling noise and a mild sensation of pressure.

Yes, I do well under pressure.

Posted by: bluepinegrove | October 11, 2011

Once more unto the breach, dear friends, once more

A few years ago, after completing my cancer treatment I abandoned this blog. I did so for a few reasons. First, though I deeply appreciated all the supportive comments I received on the blog, in email, and on Facebook, when I hit bottom I found virtual support to be wanting. Second, I figured the aftermath of treatment would not give me much to write about. I was in a slog-and-rebuild phase. Third, the post-treatment experience has affected extremely personal body parts and I reached limits with what I was willing to share.

Literally, to make a very long story quite short: I am now beginning to experience serious side effects from the radiation treatment, and I’ve just learned that this is considered a progressive disease. The damaged tissue continues to deteriorate over time. So even though I’m still considered cancer-free, I don’t get to do a happy dance. Hearing this news was almost like being told the cancer is back. Do people die from radiation damage? Yes, they do. My damage level has been rated 2.5 on a 5-point scale—reason for concern, but not as catastrophic as the cancer. Theme song crescendos:

you think I’d crumble?
you think I’d lay down and die?

Probably. I’m so OVER being tough, I can’t tell you. This shit is depressing, right?

Well, imagine how it felt to hear that the radiation damage can be TOTALLY REVERSED. And WITHOUT DRUGS. And NO SIDE EFFECTS (if everything goes well).  Nor does this treatment require a plane ticket to Mexico or Switzerland or Jupiter.

This magical process is hyperbaric treatment, which I’m getting at my local hospital. This all got started a few months ago when I went to see my oncologist about peeing blood, a condition called “radiation-induced hemorrhagic cystitis.” My cervix is also toast–melba toast. She said, “They’re doing interesting things with cancer patients over at the hyperbaric center. Want me to put you in touch?”

So I went to the hyperbaric center and talked to the main doctor there, a former navy submarine captain of undetectable age. He told me that he had done research on radiation-damaged patients in Seattle, and that 40% of them experienced full reversal of the damage. Another 40% experienced partial reversal.

How does it work? For unknown reasons, hyperbaric treatments trigger a hefty production of stem cells that go zipping through the body looking for things to fix. New capillaries grow in scorched radiation zones and tissues regenerate.  After hearing all this I was walking on air for a week!

So the hyperbaric doc and my oncologist talked some more, and decided that I should get a cystoscopy before the hyperbaric treatments began, to get a baseline. Assessing the condition of the bladder is easier than assessing other organs, and hyperbaric treatment has been done a lot on men’s bladders, but rarely, if ever, has it been done for cervical cancer patients.

The cystoscopy was unpleasant, as you might expect. But my pee doctor was adamant that I see the live images of the inside of my bladder so that I can see the problem areas for myself. This, she said, is very important for visualizing the healing that needs to happen there. So the bladder lining had these little fiery red volcanoes that looked like they were spitting little clouds of blood. The lining itself looked kind of curdled instead of shiny pink. Afterwards I learned that this procedure is usually done under general anesthesia. Did I mention that I’m getting tired of being tough?

So far I’ve had two hyperbaric treatments. My ears cannot take the compression. My Eustachian tubes swelled and there’s fluid built up behind my eardrums. Ever have blinding ear pain when descending in an airplane, and then not be able to clear your ears for days? That’s what it’s been like for me the past few days. This afternoon I went to an ear, nose, and throat specialist to have my ears inspected, and to get little plastic tubes installed in my eardrums to equalize the pressure. Should be smooth sailing now.

More info:
http://membership.uhms.org/?page=DRI

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