It's college application time around my house - my son has been working hard on essays, answering questions and all that comes with this time of life. His last application is done, his final interviews are pending, and now....we wait.
He's worked hard his entire school career; his eye has always been on the prize that is college. He has impressed me with his ability to achieve goals and his foresight in how best to reach them, qualities I don't possess. We are proud of him and perhaps I brag to my friends a bit too much about him, and if you are under that umbrella, I'm sorry. To him, I simply assure him that he's done his best, and that is all he can do. The decision of where he goes next is now in somebody else's hands, and to us, it doesn't matter who says yes and who doesn't. He is a winner no matter what; we'll love him no matter what happens.
In a way, his application experience is much like my experience with cancer. I have spent the past four years learning as much as I can, studying path reports, learning medical terminology, reading abstracts, doing everything possible to give myself an advantage with this disease. I talk with others, learn what the treatment norm is; I've taken medical risks, but when all is said and done, what it all comes down to is the decisions of the medical professionals with whom I have entrusted my life.
In spring, Universities will start sending us letters of rejection and acceptance. I have heard, not having gone to college myself, that when you get a letter from a college, you are hoping for a thick envelope. A thin one means they are thanking you but saying no. A big fat letter means they have accepted you and now want you to do more paperwork (and probably write some checks).
Unlike a letter from a university, when you receive a report from an imaging center, you are hoping for few pages. You want the thin envelope. In the medical world, brevity is good. Some of my summary reports have been seven pages long - so long doctors have actually waved them around at me saying "Have you seen how big this is?" Some have only been two pages.
I've saved them, and look at my four inch binder:
(Yes, I did give up on keeping it and just started throwing papers in there; as a former secretary I'm ashamed.....there's that lack of foresight.)
Despite all I've done to try and control the beast that is cancer - the surgeries, the drugs, the travel, the radiation, the hospitalizations, not to mention the hope expended by me, the prayers by friends, and trusting my doctors and nurses, I had not yet received a thin letter - until now.
I feel like a student who got into Harvard.
Why? I had an MRI in December. I'm having some mid-section pain, left side, and any time you have cancer and tell your doctor anything like that, you earn time in a machine. You learn not to tell your doctor about minor things, or things that are brand new, because you know where you'll end up, and not only do I not want to have even more medical tests, I don't want to cost my insurance company money for no reason. But this pain has been bothering me for months, and it aches quite badly at times, especially when I eat, despite the fact that I'm on dilaudid, so I finally confessed.
Scanned I was. I wasn't deeply concerned that cancer had spread, as I have been feeling better, more energetic. I've been off chemo for months, and I feel like I'm emerging from a dream, like I've climbed a mountain in the fog and my head is now peeking into the sunshine. When my cancer is active, I get sleepy and experience a lack of interest in activities. Now, I am awake 13-14 hours a day (a lot for me.) While I'm still on therapy, it is not chemotherapy, and the infused drugs I'm doing (Perjeta, Herceptin, Zometa) are not difficult ones. I don't need naps, I feel well enough to get out of the house a little. My last bad episode was 6 weeks ago when I spent a week in bed asleep for who knows what reason. (I didn't get up to even pee, for an entire week!) I've improved since then. I am accomplishing things again: scrapbooking, crafting, even organizing the room I do these things. My head is emerging from the clouds.
My only remaining problem is this pain and my non-existent appetite. I force myself to eat dinner but would probably not eat at all if a human didn't have to - the pain gets worse on a full stomach. So, what could be causing this pain? Was my spleen damaged somehow, or is my colon still having issues from the old c-diff problem? Did the radiation path cross my stomach, damaging it?
Well, we still don't know. But it isn't cancer - I got the thin letter.
The cancer rejection letter - the kind you want.
My MRI report was the smallest I've ever seen - dare I say it looked like a healthy person's report? This is it in its entirety:
FINDINGS: There is a nonspecific periportal edema and enhancement which appears centered about a previously treated segment 8 lesion. There is no evidence of restricted diffusion. THE MR appearance on arterial and portal venous phase postcontrast images is normal with increased enhancement only appreciated on delayed images. This could be post therapeutic reactve changes. No other focal hepatic lesions are evident. There is no biliary dilation. The gallbladder is normal. The spleen, pancreas, adrenal glands and kidneys are normal. There is no abdominal lympadenopathy. The visualized portions of the gastrointesintestinal tract are normal.
IMPRESSION: Nonspecific edema and delayed enhancement in the periportal region that appears to be centered about the segment 8/right lobe treated lesion. This is nonspecific but is likely post therapeutic change rather than progressive metastatic disease.
Do you see how many times they said normal? Do you see that there is no new cancer anywhere in my body? Do you see they mention the previously treated lesion, but don't mention that it has changed? Yes, they said no lesions are "evident" rather than exist, but that's okay. I never expected it to be gone for good. For now, they see what they believe to be post-radiation changes.
Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity.
I am a layman, and I have not talked to a doctor about this. But it seems to me that the cancer that is there is laying low for a while, maybe a good long while. Sure, cells could be growing in my liver again, or my brain, or spreading in another area too small to see - in fact, that is likely - there is no cure for metastatic cancer. However, there is no reason to think that I won't live out this year, and maybe even the one after and the one after that. (Yes, I'm greedy.) My friend Sandy lived 9 years, my friend Jeanne lived 11 years, I just read an article about a woman on her 11th year and still alive - and they had mets in their organs, not bones (which has a longer prognosis).
Why can't I be like them? Treatments are so much better than they were back when all these prognostic pronouncements were made, even from when I was diagnosed - as an example, when I started there was no Perjeta. I've been lucky enough to have progressive doctors who have given me the best of care and an insurance company that approves it.
I had a liver resection, which is rarely done. (Yes, cancer grew back but who knows what would have happened if we had not done it?) I was the first one in my oncology office to get Perjeta. I had SBRT (gamma knife). They are not writing me off.
Why write myself off?
I haven't been this hopeful since I was approved for my resection.
Dare I say that I now think I will be around to see the thin and fat envelopes that come for my son? Dare I think that I can even set him up in a college dorm room somewhere (assuming he gets at least one fat one) and that I can be a functioning grandmother when my stepdaughter's baby is born, and maybe even go to San Francisco, and not make them always come here? Maybe I can see him or her grow into a toddler, buy trucks or dolls are any kind of gender neutral toy the child may want. (It is San Francisco, after all.) Maybe I can see my grandchild be shy and hide behind mom when I show up, or be outgoing and run to "Grandma!" (or whatever my name will be) knowing there will be toys. I don't believe I will be there for the school years, but maybe toddler is not out of reach?
I'm still left with mid-section pain, of course. I suspect that feeling good has made me move more, which has exacerbated the pain. It's logical to state that you can't have been through what I've been through medically without some lasting effects on nerves and muscles. I am still dealing with that long-ago shoulder problem, which I was told would never heal and which so far, has proven true. I cannot reach over to grab something off my nightstand, I can't sleep on my stomach as it causes muscles in my back to spasm, and I now suspect that maybe the mid-section pain I am having is related to that. If it's not cancer, if it's not spleen, than it is muscle or nerves. Maybe cutting out part of my liver or stereotactic radiation damaged nerves or tissue that can't be seen on imaging. It's hard to say - muscle or nerve - but I do know that I won't be complaining to my doctor about this pain for a while. I get pain meds that help so if it isn't cancer growing, I'll deal with what wreckage is left and be damn happy about it.
In fact, I think the idea of living a full year, something I hadn't dared to imagine since 2011, will cause me to make a New Year's resolution: loosen up my body, learn some stretching techniques, get in some sort of sick person healthy shape. Maybe there is a yoga class for people who have had surgeries and can't use their shoulders or core muscles properly. Maybe I should just take walks. Chemo is hard on muscle tone and I have zero, like an old person. My doctor is insisting that I gain 7 pounds by the next time I see him, so I need to try to eat. . Healthy people - people in remission - they eat. I might take a vacation with my husband. Maybe I'll write that book everybody nags me to write.
I know, it's crazy. Most people with end-stage cancer don't get to dream like this. It feels foreign to me now, like I'm doing something wrong. But....
I got the thin letter. I got accepted, at least for a short time, into the world of health.
Now we need to wait for my son's big, fat letters.
Pain and Frustration
1 week ago