Sunday, March 4, 2012

FAQ

You guys have the best questions. Other than the “How are you/Kelly/the boys/your family?” and “What can I do to help?” there have been some that I have heard a few times. So…a Sunday FAQ.

 1)      What do the kids know?

Rory and Ky have been told that I have cancer. They don’t really need to know more than that right now. When I start treatments we will address the physical things that they will latch onto – the port, losing my hair, etc. They will not know this is terminal until that point is much closer. One step at a time.

As an aside, it should be noted that we choose our vocabulary very carefully with the boys. After Cora died a well-meaning person told Rory that Cora got sick and died ~ after that, he thought he would die each time he was sick (and to him, dying was going away and never coming home). So – I have cancer (not I am sick). When I start chemotherapy and radiation, those words will be used. I don’t want them to worry that if they take the “pink stuff” for an ear infection they will lose their hair!

2)  What is going on with your treatment?
  
I will go to Dana Farber on 3/16 to see two different specialists (one for each type of cancer). The intent/hope is that everyone will be in agreement as to how to treat both cancers and treatment can begin the week of 3/19. Question within a question: Aren’t you impatient? Yes, I am. This is an atypical situation ~ it will take a little bit to sort out. But, I have great confidence in Dr. S and Dr. H (radiation oncologist) and know that when we start, it will be the best possible treatment path.

3)      How did they find the cancer(s)?

It was a long journey to even get to the start of the process, but in January I went to a GI doc who requested a liver ultrasound. The ultrasound showed some spots on my liver that led to a CT scan. The CT scan did not clarify the liver irregularities, but it did identify a mass in my pelvis.  This is where the paths branched for a bit.

To pursue the pelvic mass, I had an ultrasound. The mass was thought to be placenta from the twins (festering placenta!). However, I was scheduled for a liver MRI (since the CT was inconclusive) so my GYN decided to tag a pelvic MRI on as well, just to double-check.         

The MRI lead to the conclusion (understandably, given the facts) that the liver irregularities were non-cancerous lesions that I didn’t need to worry about. But, it did raise a higher red flag about the pelvis/cervix. I then had surgery to have tissue samples taken of the cervix which showed I have cervical cancer.

My GYN oncologist saw the liver results and, based on the cervical cancer diagnosis, ordered a PET scan (a radioactive scan in which cancer “lights up”) to check my liver and a liver biopsy.
The PET scan showed 8 tumors in my liver, as well as some mild bone activity. The conclusion at this point (again, a sound conclusion given the known information) was that the cervical cancer metastasized (spread) to my liver. This was an atypical way for the cancer to spread, but within reason.

The following week I had my liver biopsy. The biopsy results showed that the cancer in my liver was a different cancer than the cancer in my cervix, but that it was still a metastasized cancer (in other words, Stage 4).

And…here we are now. Next week I will have a scan to find the primary source of the cancer that has spread to my liver. It typically is in the GI tract. (It wouldn’t show up on the PET scan because of a contrast agent used during the PET scan.)
Aren’t you glad you asked?


4)      Why is it called GulfGulf’s blog?

Ah…when Kelly and I first started dating (again) I lived in NYC and he lived in Rutland. One of our main ways of communication was Instant Messenger. For some reason, I would type “BayBay” in reference to him (don’t judge). He, being Kelly, one day responded with referring to me as “GulfGulf.” And there you have it. (As an aside, if you ever find a gold wedding band with GulfGulf engraved inside, it is mine. I lost it 2 years ago on Christmas Day…)

  
5)      And, my personal favorite that way too many of you have asked: Can I use curse words in my story about you?

Yes. As long has they help the story!

1 comment:

KelliGirl said...

Thank you for this. This does help when the finer details escape me or when I need to wrap my mind around it all over again. And don't worry, I swear a lot for you when I read it.