Tomorrow we’ll be starting radiation treatments to hopefully alleviate the pain that has become a recent problem. Today, we got the first good close-up picture of the cause of that pain in her neck at the radiation clinic. Despite what some of you think, it was not a picture of me.
Please note that this post will be, for most, disturbing to read. Choose to read it at the right time for you. Also know that Maggie and I are optimistic about the outcome of the upcoming treatments, as is the doctor. In fact, I’m serene as I type this.
In order to best assess our treatment options, the clinic did yet another CT scan. Oddly enough, the girl in the clinic asked “Is this your first CT?” Maggie and I both laughed. Maybe she was being polite but it was still funny. After it was complete, the doctor sat us down in front of the computer and walked us through what he saw, pointing them out as we went. Notice the use of the word “them” and not the use of the word “it.” Them were many, and them were not placed in a particularly wonderful location.
We had thought that the visible swelling in her neck was evidence of one errant lymph node. We were wrong. Apparently, the tumors have grouped themselves into bunches, all squished up against the right side of Maggie’s trachea and jugular vein. So many, in fact, that the CT scan clearly showed her trachea noticeably displaced off to the side. And <gulp> her jugular vein has built up an obvious bulge just above the group of tumors. How poetic that my lovely wife’s pain in her neck is caused by a glob of tumors in the shape of a bunch of grapes.
Maggie has also experienced various other pains lately – in her back, in her bicep, and in her chest. Despite my continued suspicion that she’s just a complainer, we went a’ tumor huntin’. We found the tumor in her chest beside her breast bone. But the dog that wasn’t barking is significant. We didn’t find any oddness in her arm or back or in her bones. That’s good news and we’ll take it.
Additionally, the doctor believes that because the tumors have been so quick to form, they’ll be just as quick to melt when we apply some radiation.
How Radiation Therapy Works
Radiation therapy works by causing damage to tissue on the DNA level, affecting the cells’ ability to reproduce. If you take a minute and ask a ninth-grader to refresh your memory about cell division, you’ll re-learn that cells reproduce by splitting their DNA into duplicate copies, called mitosis (I can smell the dust blowing off your ol’ school memories now… or is that from my memories? I digress…)
Applying radiation causes damage to the cell DNA. Normal, healthy cells have mechanisms built in that can repair or at least detect the damage to prevent further problems. These error-checking mechanisms either correct the errors or simply self-destruct the cell. Normal cells stick with the overall cell-level mission: the needs of the many must outweigh the needs of the few*. Any cells that get too needy obviously impact the body’s ability to act as a unit to complete the other genetic mission: Re-pro-duction!**
* Quoting Spock from Star Trek: The Wrath of Khan, of course. By the way, in that scene, Spock dies of an overdose of radiation. Apropos, me thinks.
** Quoting from the movie Greece. Or was it Greece 2?
Cancer cells, however, with their myopic bent on voracious reproductive, aren’t quite as Utilitarianistic. Despite the overall costs to the many, the bad cancer cells go on dividing, duplicating and passing on the damage caused by the radiation. They pass the bad DNA on to their cellular prodigy, duplicating again, and multiplying the problems along the way. Eventually, they end up dividing themselves into a no-workie state. Thus, the radiation has done its job.
It’s kind of like that secret-telling game you played back in junior high where everyone gets into a circle and then one person starts by telling a secret to the person on their left. Then they tell the secret to the next person and on and on around the circle. By the time the secret gets back around through the circle it’s just some ridiculous version of a modified mess of what it started as. It’s a pretty rough analogy but it’s what I’ve got right now.
The faster the cells divide the faster the damage will be apparent because there’s no way for the cells to fix the damage. Thus, since these damned tumors have been so aggressive and fast growing, we have very high hopes that their biggest strength will be their ultimate downfall, at least in this particular battle. But the war, yes, that will carry on.
Latest on the Clinical Trials
We have appointments with CTRC and START (South Texas Accelerated Research Therapeutics) in San Antonio this coming week. They are both consults and don’t mean diddly but they are a start.
We also have started the process of contacting MD Anderson about one particular clinical trial that I’m interested in. We don’t have any specific trial picked out at CTRC.
In case you are interested, here are the two main trials I’ve got my eye on:
MD Anderson: http://clinicaltrials.gov/ct2/show/NCT00554268
In no way are we tied to either of these two trials. Heck, I’m not even sure I understand what they are beyond a cursory level. But I know that they are good places to begin this process. And, most importantly, I don’t think either is a mistake. Right now we are choosing between a “might” and a “maybe” and there’s not much in between. Either way, because we’ve got a plan, I can sleep a little better tonight.
On Why We’ve Chosen Only Clinical Trials in Texas
This is the one and only time I’ll speak to this point. The question itself pulls us toward an abyss of future regret and I chose to not embrace any thoughts that lean that way. As a general strategy, I ask myself “Five years from now, will I still believe that I made the best decision I could under the circumstance?*” Tactically, hour-by-hour, minute-by-minute, I ask myself, “Five years from now, will what I’m doing right now be more important than spending time with Maggie right now?” Those two questions provide a great deal of clarity in making decision, like where we should look for clinical trials.
* I learned this brilliant piece of insight from my mom. Thanks, Mom. (She keeps getting smarter as I get older.)
Clinical trials are just that, trials. There’s no official evidence of whether they will work or not. And that stands true no matter where the trial may be. I’m not arguing potential. I’m arguing reality. If we can agree that there’s no difference in proven viability for each trial, then the variables of the equation that decides where we go next reduce quickly to what’s palatable to us with regard to our expectation of quality of life and support during this difficult time.
Texas is where our friends and family are. And in Austin, our support network is the strongest. In Austin, I can call Denise and she’ll be here in 5 minutes. We can call Mom Mary and she’ll walk on water to get her. Mom Nickie, she’s less than three hours away and would head this way with one phone call. Florencia, Martha, Lori, Nurse Jolie, Leslee, Kyle, Alan, Earl, Brooke … good grief, the list is endless. And my friend Jeff is right down the street. That’s a support system.
If we are rolling the dice with clinical trials, which we are and which we would be anywhere else we’d go, then we’d rather roll the dice close to where our friends and family are so they can help catch us if we fall. And, probably more importantly, help us celebrate each day.
Is there a 2% chance of improvement in the 5% chance of a great outcome of a clinical trial if we move to Duluth? Who know? Maybe. I’m not qualified to say one way or another. I doubt anyone really knows. But I can tell you that a 0.1% chance of improved outcome isn’t worth it to us if we don’t have our friend and family there to back us up during the 99.9% chance of difficult times. And I’d bet my life that there’s at LEAST a 2% overall chance of improvement just being able to sleep next Kali and Niko every night, wake up, shower in our own shower, and hang out in our own house vs. spend time in some sterile hotel or hospital room.
That it why just Texas.
Tomorrow, we start the radiation treatments. Maggie also is trying acupuncture at 10:30. We’ll be shaving her head in the shower, our shower, together. And we’ll be taking Niko to the vet down the street bright and early. We have both happy hour plans and supper plans. It’s a wonderful life. It’s our life. Together. For as long as it lasts.