Thursday, January 23, 2014

Fat Envelopes

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.


  1. You are a great writer!!! Glad to hear your year is off to a great start. Hoping and praying for many more years to continue to read your inspiring blog. It is certainly a gift you have been blessed with...

  2. Great News!! Don't forget to fill out the FAFSA (Free Application Federal Student Aid). It may help reduce the cost of your son's college expenses.

  3. It's freezing outside, but I gotta say, this column has made me feel warm all over.

  4. great post! The Y here has special in-water exercise classes for cancer patients. low-stress, low-impact, but lots of moment and stretching. Maybe yours does too? good luck!

  5. I love the thin cancer letter. But these days, colleges often post acceptance/denial notices online (you need a password to check). And similar to applications, a lot of the old college acceptance paperwork (fat envelope) is also done online. Best wishes to your son!

    1. Ack. If my son has to tell me.....I'll be the last to know. :) Parents are rarely in the lead for good news. :)

  6. So happy for your thin envelope and the news inside. :)

  7. I can't tell you how happy I am to hear you talk like this, Ann!

  8. So glad you got good news!! I'm pulling for your son (and you) that he goes to the best place for him.

  9. Awesome...Awesome...Awesome news!!!!! From what I have read,I do not think your son will be getting many "thin envelopes" and I pray you will continue to receive thin reports!!

  10. I guess this means that next years best health blog will make you a three times in a row winner.

    You made my week.

  11. This is awesome news. Praise God!

  12. Your post made me smile very big.

  13. Great news!
    BTW, the fat envelope thing isn't as true now for college acceptance letters. Because they do so much of the process on line, some acceptance letters are in thin envelopes. Some still send brochures on student housing and such so they come in thick envelopes, but some expect the student to download those or they send a thin letter with the bigger package to follow. So don't assume before he opens the envelope.

    1. This is good to know, thanks! Now I won't instantly be disappointed if I get the thin one. Oops, I mean if HE gets the thin one. :)

  14. Hi Ann,
    I love that you received a thin letter and that you're feeling better, though I'm also sorry you still have the darn pain. "Get in some sort of sick person healthy shape," those words sure gave me a chuckle. It sorta sounds to me like your son just might get several of those thick letters - then you'll get to pick and choose!

  15. YAY! So glad to hear you got the 'thin' envelope this time. I too laughed at the paragraph on getting into some sort of shape and am hoping you can find the energy to achieve that goal. I'm two years out from Stage IIIa BC treatment and am in dire need of muscle tone myself. You have inspired me to get going, since I'm sure I have not been through even 1/8 of what you have had to endure. Your suggestion of walking sounds good. Now, if only the snow would melt over here (Chicago), I could get started...or maybe I should just move to California.

    1. We are having spectacular weather - you would have no problem getting outside these days. But it's supposed to be raining so it's going to be a dry summer. I'm supposed to feel bad but I'm actually enjoying it.

  16. Oh Anne! I am so truly happy for you and your family! You sound so upbeat and hopeful. And happy for your smart and motivated son. And hoping he gets the best school for him. And THEY will be lucky to get him. God Bless!

  17. I recently watched a documentary that I believe anyone that has been touched by cancer must see. I have a PhD in physiology and the information in the documentary is real including the FDA's attempts to shut the doctor up. Please spread this information around to others you know with cancer. If I had known about this therapy, perhaps the student I know that died of cancer at 19 would have survived.

    1. Your student would still be dead. That guy is a fake and a fraud and is selling snake oil.

  18. Ann, my heart smiles for you. May you have a lovely spring and a long long long long time after.
    I have been following your blog for several years. Thank you for your blog.

  19. Ann, you will live to see your son receive those thick envelopes. But tell him that wherever he goes, he will excel. As my father always told me, "The cream rises to the top." With his life experiences, he will go forth and do good in the world. He will make you proud, I am sure of that.

  20. Ann,

    Thank you so much for this blog. I wish you and your family the very best for 2014, which you are celebrating with your new Erin Condren calendar, woohoo! (Will be getting mine next week, thanks to you.)

    You are a fantastic person and you give so very much to this world.

    Again, thank you and best wishes!


    PS if there's another post that sounds a lot like this one but from "anonymous", that's also me. Sorry about that!

  21. just a question: have you had an endoscopy to check for peptic ulcers? i've had similar stomach pains, and i have chronic gastritis and ulcers (they're not due to h.pylori infection or usage of nsaids, as i'm allergic to them all. shitty genetics, yay!).

    woohoo to your good mri report. :)

  22. Oh Ann. Your post made me cry happy tears this morning! Please keep dreaming, planning, and most of all -- LIVING! Live every single scrumptious morsel of this life. And I will keep praying that you have many wonderful years to spend with your husband, children, and grandchildren.

  23. Oh Ann! I am so happy you got a thin letter from your doctor! My doctor sent me for a Brain MRI and Ct Scan recently and I was never so delighted to see so many "unremarkable" and "normals" in a report card. They can't find cancer anywhere in me despite having declared me metastatic last year (They disagree about stage three or four because of the way it recurred in my neck). I am on Perjeta and Herceptin long term too now and find them quite tolerable. Yay for Normal!

  24. Ann, so glad for your good reports. Hope you see your son graduate from college and that you will get a chance to truly enjoy that grandbaby.
    I finally had reconstruction end of January. Something I thought was off the table forever when I had a recurrence. And my grandbaby is almost a year. So my year is starting with good things, too.
    You are really going to enjoy being a grandma!
    Elizabeth J.


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