Team SMAC t-shirts

As some of you are aware, the Team SMAC organizers arranged to sell white t-shirts with the Team SMAC logo on them. The information to purchase t-shirts is below. If you have any questions, you can try to ask me, or (to get a correct answer) use the email below and Kelli (Team SMAC coordinator and one of my oldest and dearest friends) will get back to you.

Cost: $10/child size and $15/adult size
Out of town folks will need to pay shipping: $2 for 1-2 shirts; $5 for 3 or more

Sizes: Child S-XL; Adult S-XXL  (They are looking into XS for children. If you are interested, email the address below and Kelli will let you know if they are available.)

To order: Send an e-mail with your name, contact info (phone number for local folks, full address for out of town folks), # of shirts you would like, and sizes to: TeamSMAC1@gmail.com.

Deadline: Thursday, March 15

How to pay: Local folks can pay in advance if you see a "Team SMAC" member (Kelli, Kelly, Betsy, Suzanne, or someone you know will see us) or you can pay when you receive your shirts. Please note, the shirts are made to order, so if you order one, it is yours.

Out of town folks: You can send in your payment. In your email, note that this is what you want to do and we'll send you the address, etc.

The shirts should arrive the third week in March.

What if I change my mind/forgot something/need to email again? Just let Kelli know in your email that this is your second (third, fourth, twentieth) email to help her connect the dots.

Organs

When I was hugely pregnant with Rory, Kelly had his tonsils out. When I was hugely pregnant with Kyan, Kelly had is gallbladder out. When I became pregnant with the twins, we joked about which organ Kelly would be "donating." Well, he made it through my pregnancy, but his body knew...so today, a little over 5 months after the twins were born, Kelly "donated" his appendix after ending up in the ER last night. (He is a little groggy, but feeling better overall.)

Today a very new friend, Jamie, who is the wife of an old high school friend, was part of a true organ donation. She gave one of her kidneys to her mom. I could use words like courageous, brave, rooted, devoted to describe her, but I think her action alone tells you a great deal about her. Please keep Jamie, her mom, and her family in your thoughts and prayers.

Perhaps it was waiting in the hospital combined with the types of surgeries, but today I thought a great deal about one part of Cora's PICU time. When we learned that Cora would not survive, one of her nurses asked us (though I cannot even remember how she approached the topic) if we wanted to talk to someone about organ donation. We readily agreed, hoping such an act would provide a tiny glimmer of light. But then, as the organ donation team spoke with us the realization hit - Cora would die in a cold OR, without us, surrounded by strangers. I couldn't stand the thought of it. I still can't.

It was a selfish act, I wanted to be with her at the end. I wanted her in our arms. I keep thinking, someday I will feel guilty about that choice, but I don't.

FAQ, part 2

One question I forgot....

Why do you write the blog?/Your blog is very honest, how do you write like that?

The answer is simple and complicated at the same time. No matter how my prognosis changes (hopefully for the better), I will die while Rory, Kyan, and Crosby are still children. So, part of this is a trail for them when they are adults to know a little more about me, and what happened through my cancer journey and how they were a part of it. My sincere hope is that much of it will be enlightening ~ that their childhoods are just that, childhoods, and they are protected as much as possible.

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!

Strength, Guts, and Fortitude

I was going to write about being angry. Really, really angry. Because I am. And then all these nice things happened because I happen to be surrounded to beyond wonderful people, so now I can't write about being angry. Not tonight.

I am writing in the dining room and Ky is singing Frosty the Snowman. In the sweetest little voice. See, another reason why I can't write about be angry now.

But then I keep trying to write about all of these nice things, and I can't. My words don't do them justice. How can I describe how much a series of messages from a friend who survived a brain tumor means? Or a series of messages from old youth group friends about pot brownies made me laugh because the endeavor would be such a farce? Or how a filled canvas tote from the nurses who took care of me when I had my babies brought me to tears? Or how flowers sent from old friends brightened our kitchen for days? Or how my doctor friends have offered and given guidance and support through this tangled maze? Or how a neighbor I barely know came to my door with scarves and hats for me that she used during her cancer treatment? Or how my oldest, dearest friend is doing and thinking of things I can't even get my head around? Or the countless other things that have happened each day?

I can't. I can't even come close.

An old high school friend messaged me last night, with an offer of generosity I can't even get my head around. He wrapped his message with the words strength, guts, and fortitude. These nice things, they build my strength, guts, and fortitude. And I would add faith.

As It Is

I sometimes find myself wondering with the "what would it be like" thoughts. What would it be like if Cora was still with is? Would she and Crosby be reaching their milestones together? Would Rory and Kyan give her sweet kisses and try to hold her hand in the same way they do Crosby's?

Now, as I try to imagine my family's future, both in the short term and long term, I can't help but think about Cora. I think of the present we almost had with her and the future I dreamed of with her. But, I need to learn to live in my present and in the future with the family I am in. The family with three energetic, vivacious, and loud (very loud!) little boys, one cancer-laden mom, and one dad with more on his shoulders than most could imagine.

Some days I struggle to embrace this life, my life, as it is. While I can think about what life would have been like with Cora with us, I cannot lose sight of my life without her. While I can think about what life will be like when I am gone, I cannot lose sight of the life I have left to live.

Socks

Some days I write about the soul, other days I write about socks.

I am in dire need of new socks. For some reason, all of my socks seem to be biting the dust this winter. I am down to those socks which have survived this long simply because I never really liked them, so I didn't really wear them. Right now I am wearing socks with Yorkies on them. No, really, I am.

I kept meaning to buy new socks, but I am busy and sock buying just was not a priority. Then I was told I had an exceptionally short time to live and thought: "Why buy socks? I won't really need them." Isn't that a weird thought to have? I mean, it certainly wasn't my first thought, but at some point after I found out, I had that thought.

Another thought: I decided I want to be buried (if not cremated, but that thought process is another post...) barefoot. I am not a big fan of shoes, so I want to be barefoot. This will probably make my mom shake her head. My lack of love for shoes has been a mystery to many, especially my mom.

Anyhow, back to the socks. I wasn't going to buy any. But that isn't really a positive action is it? So tonight I am going to wrap this up and go order (yes, order...if I am getting socks, I am getting the ones I like) a drawer full.