Has anyone seen my cancer?
Because my doctor CAN'T FIND IT ANYWHERE!!
(I credit this bit of cleverness to another survivor)
What can be better than that?
font family: 'Coming Soon'
I am as cancer free as I will ever be again.Both of my tests are negative and while the doctors are still trying to get a confirmation test, something would have to go horribly wrong for this to be contradicted. So I feel confident enough to say I am cancer free.
Obviously I am thrilled about this. It pushes a humpback whale of stress and worry off of me, my family, my friends. It means a whole year test-free, surgery-free, relatively pain-free. It means I can relax and focus on other areas of my life. It means I can return to whatever semblance of normalcy I conduct my life in. It means I won't have to see that strange look on faces when I tell people I have cancer. Something between surprise and pity and relief.
So I don't even want to discuss anything else. I don't want to leave myself or anyone else with a thought other than the beautiful silk-wrapped thought that I am cancer free.
And if that is what you want to be left with too, the little bird of hope perched on your hand, stop reading. Wait until another time to read my thoughts on being a lifelong cancer patient or my mother's biopsy.
But I am not cured. And there is a difference. Don't get me wrong; I am as grateful as a pardoned prisoner to have this diagnosis. I want to carry this diagnosis around in my pocket and pull it out proudly to show strangers or frame it above the couch and invite friends over to admire it.
But there is something a bit anti-climactic in only being cancer free for a year, as opposed to a lifetime. I am still a cancer patient and will have to undergo tests next year and am still high risk for the next 2-4 years. The cancer will still be there, if in no other form than a slight shiver in the back of my mind. And it will resurface every year for the rest of my life. Given what I have read of the experiences of others, how fortunate I am to not be in the throes of recurrence or metastases or more aggressive cancers or harsher treatments, any dissatisfaction on my part seems selfish, petty even. But it would be dishonest of me to say that this reversal of my diagnosis is a psychological cure-all. I still envy those who are truly cancer free.
But! This IS the best possible news I could hope for. And I am gifted a year of health, which, as the cliche says, you don't truly value until it is gone. So I will do my best to be fully appreciative and use this year wisely and CELEBRATE life more fully!
Doctors should be required to take communications courses.On a side note: I finally deciphered my cancer-free status on Wednesday, though it appears I was told about it on Monday. To the credit of the doctor and nurses I have been calling repeatedly in an effort to get my results, it only took 4 days past the original deadline to tell me my results, as opposed to the 6 days I bemoaned yesterday. Against their credit, I was told in such a convoluted manner as to once again misunderstand my diagnosis. I am an intelligent person with 7 years of higher education in English language and literature, a field dedicated to the analysis and interpretation of language. And yet, in dealing with the medical community I have encountered an excessive number of language barriers in situations where communication is critical.
I have already censured the medical community for 1) contrary use of 'negative' and 'positive' in diagnoses without additional clarification and 2) contradictory body language during diagnoses (e.g. smiling and cheerful tones during the delivery of bad news.
This most recent misunderstanding comes from such phrasing as "so far so good, but I cannot say for sure until I receive written confirmation" and "your thyroglobulin level is low, but not low enough for a confirmation." This phrasing led me to believe that the "confirmation" was equivalent to a final evaluation of my lab work. I have since been informed that it is simply a precautionary measure, equivalent to double-checking and that my thyroglobulin level (.25 NOT 2.5) IS low enough to be considered negative. The nurse seemed quite bewildered as to why I was still persistently calling for my results as I was supposed to realize that what was relayed to me, sans confirmation, is as good as it gets.
So now that we are officially done worrying about me, let's worry about my mom for a bit....
Today I went with my mother to her biopsy appointment.Doctor Speak played a significant role in our understanding of what happened.
Whereas all of my cancer testing and treatment has taken place at the Harris hospitals (HEB and Fort Worth), my mother chose to get treated at UT Southwestern Medical Center, which has a nationally recognized endocrinology department ranked 24th in the nation. Harris FW scored a 26.5 out of 100 on the same test (U.S. News). That's like getting drunk before a trigonometry exam you didn't study for and sleeping half-way through. Only it's your doctor who is taking the test and the subject is how to heal you. That and the hassles I have dealt with... I am seriously considering switching.
The wait time was not bad at all. We arrived at 8:45 for a 9:00 appointment and they got her almost exactly at 9. She only had three lines of paperwork to fill out and two places to sign. However, we did run into another language barrier with the paperwork, which asked if she had a Mental Directive and an Advanced Directive, neither of which we had ever heard of. Considering more than 60,000 people search the terms "what is an advanced directive?" every month, we are not alone in our confusion. I guessed it was some kind of legal document like a will and I was right, but why didn't they just say, "Do you have a living will?" Who besides lawyers and doctors ever refers to these things as directives?
The rest of what happened was described to me by my mother since I had to stay in the waiting room. You might want to compare her experience with mine. I have to assume that my doctors/technicians were superior in explaining what they were doing to me throughout the biopsy than these doctors/techs were because my mom was pretty confused about what had happened to her. Here is our conversation as close as I can remember:
ME: Did the anesthetic hurt?
MOM: I didn't get any anesthetic.
ME: What? Seriously? Are you sure??
MOM: Yeah. They just poked me with needles.
ME: Was one of these needles small?
MOM: They were both about the same size. I was watching them on the screen.
ME: Okay, but did you actually see the needles with your eyes? You can't really judge the size of things just from the screen. Did they at any point say "This is going to hurt a bit" and stick you with a needle that pinched a bit?
MOM: Oh yeah, they did that.(This was the anesthetic needle.)
ME: So how do you feel? How was it?
MOM: My neck is sore. It hurts a bit. But it wasn't terrible. But my neck hurts.
ME: Well how badly? Was it worse than you expected? Should I tell people you experienced more pain than me?
MOM: No. Just painful enough to want sympathy.
:) So I guess it is still safe to say that the biopsy is not as scary as it seems on paper (that pre-web text venue). Don't let the giant needle worry you. You will feel pressure and soreness but not much more.
And I could happily end this saying I am perfectly hopeful.
BUT. (Bigger sigh.)
I am worried. For one, my mother drew a picture of her ultrasound for me. She is an incredible artist, so I know her rendering is accurate. Unfortunately, what it shows is five nodules in two clusters, all on the left side of her thyroid and all about 1.5-2 cm in diameter. The doctors described what they saw as "lumpy" and "mushy." If you recall my biopsy, my thyroid was described as being "lumpy and bumpy." I think these terms may be Doctor Speak for cancerous.
The only other thing she noted the doctors saying was that it was likely she has Hashimoto's disease. I was also diagnosed with this along with the cancer, but the cancer trumped, especially since it meant the removal of the thyroid (and thereby the removal of H disease).
The symptoms of Hashimoto's disease that my mom displays are (click here for a full list):
- A large, lobulated (lumpy) and holey (in the Swiss-cheese sense) thyroid
- Sensitivity to cold
- Memory Loss
- Hair Loss
- Muscle pain and stiffness
- Hypothyroidism (slight)
After my mom's appointment, I felt her neck and found that the left side was protruding a bit more than the right, meaning either her thyroid or lymph nodes or both could be swollen on that side.
All these things mean that my mother has the following symptoms of thyroid cancer (click here for a full list):
- Enlargement of the neck/lymph nodes
- Difficulty swallowing & a choking feeling (which we both strangely attributed to her getting older)
- Asymmetry in the thyroid (big nodules on one side, nothing on the other)
- Hypothyroidism (slight)
- A lobulated and holey thyroid
And perhaps a better daughter would lie to her mother and tell her she thought everything was great to spare her a couple of hours of worrying. But everyone told me things were fine and that only made me MORE upset when it turned out not to be true. In fact, the constant reassurances from well-meaning strangers and questionably motivated medical staff made my diagnosis a veritable shock. Sorry Mom. We will just have to pray that much harder.
God, if you are reading my blog, please give us one more cancer-free verdict.