Drat and Drat, and Drat Again!

It's Monday, August 13th. What a fitting date! Too bad that it's not a Friday. That would just make this day complete.

So I was asked on Sunday what I expected the scan to show. I don't know how to answer that. I've given up all semblance of my own expectations by this point. I never expected Hodgkins to come back--especially after 33 years, then I never expected it to come back again, or come back after the bone marrow transplant. Drat!

What I hope for is that it's in only one location and that we can treat it simply with radiation and give my body a break from chemo. That's what I'm wishing and hoping for, so that's the answer I give.

Silly me! I should have known better.
I'm at work, typing madly away, when I get a call on my cell phone; and I recognize the number immediately. After an entire weekend of wondering and contemplating the "What ifs. . ." (Don't you just hate that game? What if they didn't see the cancer on the scan, but I have it? What if it shows that cancer has spread all over? What if we can't do radiation? What if it's not Hodgkins this time? What if. . . and on and on. I HATE it!)

Finally, the waiting is over; and I'm told that Dr. Wendy wants to talk to me. I hastily grab a post-it note and a pen and make my way to the nearest conference room.

Just as I've sat down, Dr. Wendy's voice is in my ear. "So I have the results from the PET scan. The scan showed active disease [cancer] in. . ." She starts listing off various locations so fast that I can't record them all. I'm able to record the start of the names of about 4 lymph node chains on the right side, another on the left, one lymph node by my left kidney, and one behind my belly button.

What a minute! My mind is reeling as fast as she's naming lymph chains. This is too many places and way more than I expected. The cancer is in at least three main places and on both sides of my body (right and left). That means radiation is no longer an option. Suddenly, that initial five-year treatment plan is out the door. Drat!

We need to start chemo AGAIN? Do we need to schedule a needle biopsy and a bone marrow biopsy to make sure we know what we're dealing with? No, she's pretty sure. "Although, if you want me to stick a needle in you, Trish. I'll do that."

"So what happens after we kill these occurrences of Hogkins and it comes back in about 3-4 years?" I hesitantly ask. "Trish, you're a smart person. I'm not going to lie to you. We're going to hope that they discover a cure by then." That's not much reassurance. Drat!

I'm in tears while my mind is starting to process everything. Great, and I'm supposed to lead a meeting in about 20 minutes. I start crafting the following text message to family members:

"Results of scan: It's in 3 areas. Left side, right side, and near belly button. Way more spread than anticipated. Radiation won't work. Got to use the new chemo drug that was approved in the past year for Hodgkins, which mean no 5-year plan options :-(  Good news? It's not both above and below my diaphragm so good chance of chasing it out this time. And a Priesthood blessing promised the treatment would exceed all expectations. Maybe I have a 7-year plan after all."

The transplant team at LDS Hospital wants to present my case in their weekly Tumor Review Meeting on Wednesday. They don't think any more transplants will ever be the right treatment option for me, but they're going to ask if anyone has any other treatment ideas or hope to offer.

And the new drug is known to cause pulmonary toxicities, so a consult with Dr. Mike is necessary. It's not a matter of what we're going to do. We have no other options at this point. We have to use the new chemo drug if we want any hope of success, but it is a matter of balancing the doseage with the possible side affects: enough chemo to kill the cancer cells but not enough to kill me.

So our plan is:
Dr. Wendy will talk to Dr. Mike about the proper doseage for me. Then, after the Tumor Review Board meets on Wednesday, she'll talk to Dr. Asch to see if anyone had any other ideas, and then she'll call me. We'll either meet in person on Friday or next Monday to start chemo.

Drat and drat, and drat again!