The Cancer Journey 6

 

I made it through Radiation Therapy without too much problem. Yes, I got tired, terribly, deeply, bone-deep tired, but after six weeks that was gone. My skin turned red, as if with sunburn, but that faded, and it never became worse than that. Some women have a lot of blisters and sores from the treatment, but not smoking and not getting suntans all my life paid off. There was one small spot, however, that turned redder and took longer to recover, and I recognized that it was the area where I had been badly sunburned, multiple times, in my early teenage years. Thirty-five years had passed, but still, that spot was more susceptible than the areas that had been covered by my swimsuit. Still, by not having previously damaged skin, for the most part, I could recover a lot faster and lot easier with little permanent damage.

The same, unfortunately, could not be said for Barbie.

I took her with me to illustrate the Cyberknife, which is an improvement on the One-eyed monster. With a much narrower beam, the Cyberknife can deliver radiation with surgical precision, and thus can also deliver higher doses that affect just the tumor. Greater flexibility of the head, with six degrees of movement, means that it can also follow the irregular outlines of the tumor, and can hit the same area of the tumor multiple times in one session while passing through different overlying tissues. The Cyberknife can be used as an alternative to surgery in certain cases, by shrinking and sometimes completely destroying tumors in situ.

Barbie seemed to tolerate her treatment. When I got her home, however, and moved her legs, I heard an unusual crack. Then her legs hung oddly. So I had to take off her dress to see what was going on, and her panties – and found them melted to her crotch. When I pulled the material away, gently, her legs fell off.

Barbie's crotch was broken.

I've had that Barbie for over forty years, and didn't want to just throw her away, so I collected all the bits and tried to put her back together with superglue. Which is a lot trickier than it sounds. Holding Barbie upside down, I balanced her leg assembly in her hips, then put the glue on the pieces. And then held it all together for the required sixty seconds. Pulling my fingers away too early -- which I did more than once -- meant that the whole process had to be repeated. Again and again I tried. Finally I succeeded, and Barbie was more or less fixed -- and all I had to do was keep her in that upside down position for another 24 hours while the glue cured.

I realized that I should have thought about that before I started.

So, holding Barbie in one hand, I hunted through the house for something that would hold her in the right position. A vase? A glass jar, a -- ahah!

Which is how Barbie ended up wearing only a bra, upside down in a beer glass.

The Cancer Journey 5

Every morning, Monday through Friday, I get up, eat breakfast, and get dressed, and head off to the radiation specialist for an early enough appointment. Once there I sit in the waiting room and knit, because knitting doesn't care if you only manage three stitches or three hundred -- it's still progress. Sometimes I talk to the other patients. They tend to be an optimistic bunch and talk about lives that do not revolve around cancer. This is real life, not a Funky Winkerbean story.

Within a few minutes the loudspeaker calls my name and summons me. I go to the right hand changing room, put my purse, shirt, and bra into the right hand locker, and put on a medical gown. It's the kind that likes to fall open, so I use a couple of clips, one at the shoulder and one at the waist, to hold it shut. It's so much easier to just clip the gown than to fight with the ties. Apparently I'm not the first person to think of this, because the technician said that some people use clothespins. I wonder why doctor's offices haven't thought about investing in clips or clothespins for their patients? They aren't that expensive, and they do make the whole experience so much easier.  But then I suppose the FDA would call such things medical devices and require vast amounts of research and testing to determine that they are safe -- and then how could we afford to buy them to hang up our clothes? Better just bring your own.

Next, I am escorted into the vault, lay down on a narrow table, and assume the virgin sacrifice position. Arms go above my head, head in place by brackets, and I grasp a post. The technicians slide me up beside a huge, one-eyed monster and pull back my robe to expose the "treatment area." The lights dim and they push my passive body back and forth to make the marks on my chest line up with the red laser lights shining from the wall and ceiling.

Oh yes, the mark. At every treatment my body must be in the exact same position, so that the radiation hits the exact same area. Some people get tattoos, a permanent reminder of their treatment, but I have painted marks with stickers over them. On the good side, they will go away after treatment is finished. On the bad side, they keep trying to go away now, and must be constantly reapplied.

Once my completely submissive, partly exposed body is ready, the technicians leave the half-lit room and the heavy door to the vault closes. I'm alone with the leering monster. There's a buzz, a pause, and then the monster slides over my body to peer at me from the other side. Another buzz. And then the door opens, the lights come up, and that's it for another day.

Maybe tomorrow the monster will eat me.

***

The name of the one-eyed monster is Linear Accelerator. For a good explanation of how it works, written in lay terms, check out http://www.radiologyinfo.org/en/info.cfm?pg=linac. The TL:DR version is this:  the machine is programmed to deliver high-power x-rays that have been pre-shaped to fit the area that needs treatment. Thus my poor right breast is being radiated, but only my poor right breast.

There are side effects, the price of treatment. I'm developing what looks like chronic sunburn in that area, and I have fatigue. Fatigue is not just being tired. It's -- fatigue feels as if someone came up when you weren't looking and set the exercise bike to hard. Fatigue is always walking uphill, and every day the slope gets a little steeper. Fatigue is a vampire sucking out your soul.

Nothing much, just a little fatigue...

Tomorrow is a new day.

 

The Cancer Journey, 4

So, having healed up from the surgery, I was given the go ahead to visit the Oncologist and the Radiologist. According to the Surgeon, I only needed the Oncologist to prescribe the hormone blocker for me. The big truth of medicine, however, is that one doctor does not speak for another doctor. Ever.

The Oncologist suggested the possibility of chemo. Nasty stuff, chemo. It poisons you, but hopefully the cancer cells, being weaker and stressed by their growth and fast division, should die from the chemo while your healthy cells will only be damaged. Damaged cells, in time, should recover.

Should.

But does every one with breast cancer need chemo?  No. If your cancer hasn't metastasized, that is, some cells have started to wander away from the mother tumor to hide in healthy tissues and grow baby tumors, then you don't need to poison the entire body to get them all out. But how can the oncologist be sure that the cancer cells have not reached that point? Yes, the margins of the tumor were clear, not ragged with areas where cells have broken away, and there were no cancer cells trapped in the lymph nodes, but still, could a few have gotten away and just not yet been washed into the lymph nodes?

And that's where the cancer story gets complicated.

Cancer starts with a mutation in a cell, generally a cell that is not completely differentiated and still dividing. These are germinal cells (the ones used in reproduction,)  renewal cells (skin,  gut, and other orifice linings), or undifferentiated cells used to repair and rebuild tissues. But most mutations will simply make a cell defective and kill it. But mutations in certain areas will unlock the genes that the cells used when it was part of the embryo. These cells grow and divide, just as they did in the early embryo, but in a mature person they form a tumor. This tumor does not have, however, the directions to tell it when to stop growing.

Even worse, the unlocking of these genes causes other genes to unlock. With each cell unlocked, the cancer cells become more and more like embryonic cells. They lose the characteristics of the cell they had been, become formless, and then do something else that embryonic cells do -- they wander to other places in the body.

In embryology, the cells move around quite a lot, but they know where they are going. They form discrete structures and mature into proper organ cells. Cancer cells, on the other hand, have Alzheimer's. Not only are they regressing into infanthood, they wander with no idea of purpose or place. Eventually they get stuck somewhere, settle down for away, and then grow and divide. And create more tumors.

Worse, the cells in a tumor do not do this all at the same time. While many cells are in Stage 1 cancer, others have changed into stage 2 or stage 3 cancer cells. So just because most of the cells are still only mildly changed, there may already be stage 4 cells wandering through my tissues.

Getting poisoned starts to sound better. What chance is there that there are advanced cells in my body?

In my case the biopsy did show that about 5% of my cells were changing faster than the rest.

So the Oncologist asked for two things before he determined that I would not need chemo. One was a catscan to check for metastasis tumors in my chest and abdomen, and the other was Oncotype(dx) testing. The Oncotype(dx) testing looks at the genes in the cancer cells and gives the tumor a score based on the number of genes that have already been unlocked in the tumor. "So," he said, "I'd like to send your tumor away for genetic testing."

I touched my wounded breast. "But it's gone."

He grinned. "I have it here."

I'm sitting in the office of a doctor who collects people's tumors! Does he have them in little display cases along the walls of his office?

So I got my catscan two days later, and it showed many interesting things, but no metastatic cancer. I do have a tortured aorta, proof that my heart has been twisted by the cruelties of fate, and my liver is overweight, but nothing to concern the oncologist. Two long weeks passed before the result of the Oncotype DX came back. My tumor had a score of 18, right on the border between slow and intermediate. With the fact that the tumor margins had been clear and the sentinal lymph nodes had been clear, we threw the dice and decided against chemotherapy.

Yay! I hope...

So, on to radiation...

The Cancer Journey, 3

On February 2, Groundhog's Day, and just thirteen days after receiving my diagnosis, I fasted and prayed and presented my sacrificial body to the local hospital. With a minimum of fuss, apparently having realized that I was a flight risk, I was ushered into a small room and told to change my clothes for a gown and a pair of "lovely designer socks." One size fits all, of course. The most striking feature of the socks is that they have non-slip soles, for those few times when the nurses will actually let you out of bed. They are made of soft cotton, are washable, and go home with you.

The gown was made of paper. Stiff paper. It could have held the largest person I know, but on me it stood straight out in all directions. It was also incredibly hot. The nurse came back, took one glance at my apparently reddening face, and ran to get a cloth gown. When she brought it back and I quickly changed, I asked her about the paper gown, which was lined with extra paper. It also had holes in it, lined with a rubber seal like the opening to a vacuum cleaner bag, that did not penetrate the lining.

"It can be inflated with hot air," she explained, showing me a tube that ran from the wall. "Some people like it."

Not people whose estrogen has been suddenly stopped just a week previous, I don't think.

We went through the normal surgical preliminaries -- starting the IV, allowing in the visitors, a quick chat with the anesthesiology people. I repeated again and again my one great wish, "Please have a big bucket on the bed in the recovery room. Not a spit-up tray. I throw up after general anesthesia. I really throw up."

And everyone assured me it was okay, that the anesthesiologist has drugs for this sort of stuff. And I would repeat my request. And I would get assurances...

And then I and my surgical buddy were whisked down for some pre-surgery work. I had to have a wire installed in my breast. In order to make sure to get the tumor with a minimum of effort and damage, a radiologist used an ultrasound to guide a wire into the center of the mass. As he planned his route, he muttered, "I'm going to go right through the center of both of them."

"Both?" I was supposed to have only one tumor. I didn't like the idea of new tumors suddenly popping up. That's a bad, very bad sign.

"Lesions. The other could be a hematoma."

"According to the MRI, it's a hematoma," I said, a bit relieved. I hugged my surgery buddy tightly.

After the wire was installed, I was also injected with a radioactive tracer that would help the doctor know which lymph nodes to sample. And then a mammogram to verify that the wire was correctly placed. And the doctor proudly said, "Right though all three of them."

"Three?"

"The tumor, the 'hematoma,' and the marker clip." I could hear the quotation marks in his voice.

Along the way we discussed the identity of my surgery buddy. His technician was the only person that day to even know who he was, and even she only recognized the name, and not his immensely cute, squishable form.

And then came the surgery, which lasted under half an hour, and I came aware in the recovery room. After a few minutes polite discussion, I suddenly begged for the bucket. She gave me a spit-up tray. And then she gave me something bigger. And then again, and again, and again, and...  Finally she hung another bag of fluids so that I would at least go home well-hydrated.

Reaction 1, drugs 0.

Pathology confirmed that that the tumor was no more than one centimeter at its widest point, and that no cancer cells have been identified beyond its margins. The lymph nodes, the filters on the great sewer system of the body, had caught no cancer cells. It would appear, at this point, that it was caught early and removed cleanly. And that the other thing was indeed a hematoma. Whew!

I don't know what the future treatment will entail. I need some more doctor's visits to determine what path to take. Chemo is not likely, radiation therapy is. Also a drug to starve my body of estrogen, which will make life even more interesting than it already is. But I don't have those answers yet. I haven't reached that part of the quest. Still, the dragon is dead and all that's facing me is the long slog back from Mordor.

The reactions to my having cancer have been interesting. My friends have taken it much worse than I have. But from where I'm standing, this sucker was caught early by an annual mammogram and removed before it could start acting really cancerous. It had not yet begun wandering through my body, and there is a pretty decent chance that even if I refused all further treatment, I would never see it again. And while I have a couple of new scars, and some pain, my body is not particularly mutilated. It's like I'm looking at a crumpled fender yet knowing that I just narrowly missed a catastrophic wreck.

And its even more poignant because, if I had followed the proposed guidelines that women shouldn't bother with a mammogram every year, that every other year is good enough, I would be writing a different story. This would have been my off year, and if I had waited until next year to find this, then I would likely be looking at a full mastectomy, strong chemotherapy, and a much greater chance of recurrence.

So please, go get your annual mammogram. Tell them Cthulhu sent you.

The Cancer Journey, 2

Am I the only person tempted to say "Beetlejuice" three times?

With a diagnosis of cancer comes a lot of reading material. A lot. I have a pamphlet for every little procedure and possible pathway on this journey. Most will need to go on a shelf and wait for another day, and hopefully will be of no more use to me than as resource for future writing, but if I need them, I have them. And I can pretty well answer the question of "Where does the American Cancer Society spend all that money it doesn't spend on research?"

It's spent on education, on these pamphlets, on classes, and on resources for the Newly Diagnosed.

My next step was to get an MRI which would tell the doctor if there were any other developing trouble spots. In an MRI, for the person who has never been through this, you are put into a tube and subjected to loud banging noises. To protect your ears -- unless you are the unfortunate child who is getting an MRI of her head -- the technicians give you headphones to cover your ears and pipe in music that will not be heard over the banging. And then, to examine just the afflicted part, it is elevated away from the rest of the body. But when the afflicted part is something soft and squishy that is not easily elevated, then gravity is used. I had to lay down on a special frame and pretend I was Superman. The worst part of the whole thing, easily, is that the technicians failed to start the IV (for contrast) on one side, and so had to stick the other side as well.

The next day I went to see the plastic surgeon. He was a very affable man. He told me all about the various kinds of implants I could receive if I had a mastectomy. One can get saline implants, silicone implants, or even a new solid natural shape silicone implant. And then he said the words that pretty much sealed up my opinion of getting reconstruction: "The second surgery will be outpatient and will take place a few weeks or months after the first."

No.

It seems that after the mastectomy, which removes all the tissue above the muscle wall, the plastic surgeon comes in and places a spacer under the pectoral muscle. (So you're sore both above and below that muscle.) Then, over the course of several weeks, the spacer is inflated with saline. When it's big enough, the spacer is removed under general anesthesia and the implant put into its place. "It's outpatient surgery."

No! (Have I told anyone how surgery phobic I am?)

And then, because implants wear out over time, and I'm such a young woman, I could expect to have the implants replaced every ten years or so.

NO!

Of course, the other option is flap reconstruction, where muscle and fat is taken from the belly or buttocks, and a new breast is molded from it. Advantage -- it never needs replacement and never feels hard, and can be done completely at the time of the mastectomy. Disadvantage -- you end up with two big surgical sites instead of just one, and if the tissue is taken from your belly, you end up with a weaker abdominal wall than before.

Dear God, no, just get me out of here!

And then the plastic surgeon pulled up the radiologist's report from the MRI from the night before -- thanks to open access of records he could see what had been posted in my chart -- and gave me the news that the MRI had confirmed a singular lesion of not particularly large size. I was likely go for the lumpectomy.

Thank God. Finally, a bit of luck my way.

On Friday I went back to the Breast Surgeon and got the results of the cell tests. Estrogen positive, Progesterone positive, and HRER negative. What this means is that the cancer cells are fed by hormones, so I will need to take a hormone blocker for years to prevent recurrence, but I do not have certain genes that predispose me to developing cancer. So my prognosis for survival is pretty good -- barring a zombie apocalypse, an ecological collapse, or a wayward asteroid.

The Cancer Jouney, 1

Yep, that's what they call it these days. The Cancer Journey. Personally, I'd prefer an Alaskan Cruise, or even a Mediterranean Cruise, but I guess we take what we can get.

I'm sure that there are many, many, many blogs out there about The Cancer Journey. Some even have science in them. This one is my story, and while it may not be significantly different from all the other journeys out there, it will answer all the questions of my friends and family. And who knows, maybe I'll pick up some more friends along the way.

The story started in the last week of December, when I went in for my annual mammogram. Now, like many women in this world, I have no particular fondness for that exam, but I go anyway because I'm not going to tell all the people I know who have had breast cancer or other issues that I just can't be bothered. So I went. I even went a bit early because I had plans to see the new Star Wars Movie, and the technician took me in early and quickly did the scan.

At the end of it, she said, "I'm rushing these over. You'll understand why." And of course I understood why. It was the holiday season, she had told me about her children, so she obviously had things that needed to be done which were a lot more interesting than running tests. Going early was a favor to everyone, right? So, even before my appointment time I headed to the movie, which turned out to be a bust -- all the showings were sold out. So I made plans to see it another day and came home to the message that "further evaluation was needed. We'd like to schedule an ultrasound."

I had flunked my mammogram.

December had been an incredibly stressful month for reasons above and beyond the season, and I didn't feel like causing undue alarm in anyone over something that probably nothing -- so I made the appointment and kept it to myself. Though I did have to tell my one daughter because the ultrasound appointment would affect when I could pick her up from work. And the technician kept assuring me that the spot that had been seen was likely a cyst, these are usually benign, etc.

I flunked the ultrasound.

The images were sent directly to the radiologist, over the internet, and now I needed a biopsy. And that was scheduled for the next week, at seven in the morning. So now I _had_ to admit to the rest of my family what was going on. But no worries, the biopsy usually shows that these cysts are benign.

I flunked the biopsy.

Three weeks, exactly, after the mammogram, I was sitting in the Breast Surgeon's office as he outlined my possible options: lumpectomy with radiation or mastectomy, with or without reconstruction. He asked me to see a Plastic Surgeon to learn about my reconstruction options, to get an MRI, and to come back in a week when he would also have the results of some tests on the tissue samples. And then we would make decisions, once he could tell me what decisions I could make.