[To catch up on previous chapters of Heather's story, link here (post #1) and here (post#2.)]

Heather had her first oncology appointment today.  She was lucky to get in so quickly after her primary care physician ditched her (that still makes me shudder) and she was prepared.  Last week, after my post about her diagnosis of CGD-TCL, cutaneous gamma-delta t-cell lymphoma, she had been contacted by Judy Jones at the Cutaneous Lymphoma Foundation, and she was feeling as prepared as she could.

What she was NOT prepared for was what happened!

Her oncologist was happy to tell her that the results of her clonality test had come in and it turns out that no, she does not have cancer.  No treatment needed.  They will continue to follow her for awhile, but don’t expect the diagnosis will change.

WHAT??

If you’ve read my story of SPTCL, then you know the clonality test was pivotal in my story, too.  In fact, my entire diagnosis was predicated on this clonality test, and like Heather’s — the clonality test proved I did not have cancer.

While Heather was there, the oncologist got back in touch with the lab in California that reviewed the clonality of her lymphatic cells.  They reviewed the slides, reviewed the findings, reviewed studies and all agreed that no — Heather has no cancer.  She does have some problem some lymphatic cells, but she will not be treated.  Instead, she is working on diet and nutrition.  She’ll be checked again in four months.

To say Heather and her family — and her co-diagnosed friend Trisha — are euphoric, doesn’t begin to touch it.  We’ve not even met in person, but Heather and I will share a bond forever.  She lives in Nevada, and I’m supposed to be out that way in October — so we hope to meet.

Mostly I’m thrilled, just thrilled that the system worked the way it should.  Heather’s friend Leslie found me and my experience, Heather and I consulted, and two patients worked together to arrive at the right answers for this young mom who only deserves the best.

Now read what Heather has to say about it all — and post a cheer or two to her blog.  Woo HOO!

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Here’s the good news:  Heather does not have SPTCL.

Here’s the bad news:  Heather does have another type of T-cell lymphoma called CGD-TCL, cutaneous gamma-delta t-cell lymphoma.  Also written with Greek letters:  cutaneous γ/δ T-cell lymphoma

To say that both Heather and I were shocked is an understatement.  If you read my post a few weeks ago, you know that she contacted me when she had a lump biopsied, and was told she had SPTCL (subcutaneous panniculitis-like T-cell lymphoma.)  Thing is — like in my case four years ago — she has no other symptoms.  Further, since then she has had additional tests, including a CT scan that shows no abnormalities, and blood work that is clear.  So yes — shocked.

And, as if it’s not bad enough that she’s been dealt this blow — listen to this: when a review from the NIH is requested, the protocol is for it to be submitted by her primary care doctor or her oncologist, then for the NIH to report back to the doctor who requested the review.  That doctor is then responsible for getting the results back to Heather.

Heather’s biopsy was submitted to Dr. Jaffe at the NIH in early June. When she hadn’t heard anything back by yesterday, almost a month later, she sent an email to Dr. Jaffe just asking when she could expect the results.

Turns out the review was completed June 18 — two weeks ago! — and returned to Heather’s doctor…. and yet no one — not the primary care doctor OR the oncologist has contacted Heather with the results.  Still.  Today.  Not a single phone call.  No one!

The reason Heather knows about her diagnosis is because Dr. Jaffe was considerate enough to attach it as a pdf to her reply email.

So we’ve learned a couple of lessons from Heather’s odyssey so far…. first, to be assertive about reviewing a diagnosis.  Yes — it turns out Heather was misdiagnosed, too — although in this case, she does seem to have lymphoma.  But if she had not pursued a review of her diagnosis, she would be treated for the wrong lymphoma.  Then what?

Second — when you don’t get test results back — go looking for them!  And don’t take no for an answer.  You can be polite, but you need to be assertive.  Had Heather not gotten in touch with Dr. Jaffe, she would still be waiting for the word.  And as far as her doctors are concerned — she’s still waiting!  (I’m having trouble stopping myself from calling these medical bozos what they are.  Oh.  Did I call them that?)

CGD-TCL is just as rare as SPTCL, no doubt about it.  It will be impossible to find a doctor to treat it who has experience with it.  I’ve suggested to Heather that she find a doctor who is willing to research and learn alongside her — a true partner for this unusual disease.  Easier said than done, I’m sure!  But what a blessing if she can actually find one.

If you’d like to follow Heather’s odyssey, I’ll keep you updated here… or better yet…. check out her new blog.  Then, keep Heather and her family in your prayers.

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Those of you who follow my blog know that I’m a fan of Randy Pausch, like so many others. I first blogged about him last September, after watching his Lecture of a Lifetime — what he has learned in his too-short years, and the legacy he wants to leave his wife and children. As I said then, I felt his remarks were simply brilliant, and brilliantly simple.

[If you haven't heard of this fine man, you should know that in August 2007, he was given up to six months to live. He is dying of pancreatic cancer, a swift killer with very few who survive it more than a few months once it's diagnosed.]

Then in February I posted an update with a link to his personal blog. It has been one of the most linked-to posts I’ve ever written here.

I learned Randy appeared on Oprah today. That means that people who had not heard of Randy, and his “lecture of a lifetime” before today have certainly heard of him now.

I didn’t see Oprah, but I did decide I needed to check back in with this remarkable man. On his personal blog I found a link to the video of his address to the Carnegie-Mellon Class of 2008. (As an aside, I’m proud to say that my closest friend’s son, named Tim, was a top engineering graduate at Carnegie Tech this year — you go, Tim!)

Just like any of the other appearances of Randy’s I’ve witnessed, his graduation speech was moving; moving to the point that you just wish — just WISH — and hope and pray that his death is a loooong time coming from now. He is so generous with his words of wisdom. He needs more time to share them all.

He made two excellent points for the rest of us:

• When we are on our deathbeds, it won’t be the things we did that we regret. It will be the things we didn’t do.
• To live your best life, find your passion — the thing that fuels you from the inside. You won’t find it in things you buy or own. You’ll find it will be grounded in other people.

Since first discovering Dr. Pausch last year, I’ve felt a bit of a kinship. Unless you’ve ever heard that death sentence (you have only six months to live) you can’t really relate to it. But if you have heard it? You discover there is a very strong tie that binds you to that person — and I feel that tie with Randy Pausch.

Take the six minutes to watch his commencement address. It will stay with you, as I hope it will stay with those many graduates of Carnegie Mellon who were lucky enough to have known Dr. Randy Pausch, even if it was only for those few minutes at commencement.

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Almost had a melt-down again last night…. but by the time the evening was over, it was almost a joyful experience!

I received a note from a young woman named Heather, as follows:

I would like to talk with you. I was diagnosed with SPTCL yesterday. I read your story and I feel exactly the same. Like your story, I am not showing signs of being sick. My white blood-cell count is normal at this point. I have no lesions on my body. I feel extremely healthy. I can not believe that I have to do Chemotherapy. I am not presenting any of the “normal” symptoms that this disease comes with. It just doesn’t feel right. I would like to talk to you about your experience as I am getting ready to go through the same thing.

I almost fell off my chair. I still get chills when I read Heather’s note!

I immediately sent her my phone number — and last night we talked for about a half hour. By the end of the conversation I was shaken to the core. As I explained to my husband, I felt like I was talking to myself — the same conversation I might have had with someone else who had walked in my shoes in 2004. It was scary, and euphoric all at the same time.

Why? Because both Heather and I think there is a good chance she, too, has been misdiagnosed with subcutaneous panniculitis-like T-cell lymphoma.

She did have a biopsy, like I did. She was told by her primary care doctor that “a team of pathologists” had reviewed the biopsy, and SPTCL was their conclusion. But she has no other symptoms (nor did I) and all the “classic” lymphoma symptoms are missing: chills, night sweats, hot flashes. Her blood tests are clear, as were mine. She does have other lumps, as I did.

I’ll keep you posted on what we learn about Heather’s situation. I’ve provided a few suggestions for cutting to the chase, getting her to Dr. Jaffe at the NIH, and hopefully proving that she, too, has been misdiagnosed.

But here’s how I feel today: euphoric!  Because if I never help another patient for the rest of my life, helping Heather through this difficult time will have been worth my efforts.

Wish us luck!
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Find a follow up to this post here.
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Updates and SPTCL resources will be found on the new SPTCL page — link here.

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