MD Anderson-or-Bust (and Parent/Teacher Conferences)

I’m back! Officially back to the usual routine of work, kids, dinner, kids, etc. To be honest, I missed it. That, and that husband of mine.

I’m officially heading to Houston next Wednesday for my early Thursday morning appointment at MD Anderson. I’m nervous and excited all at once. Excited about a new way of approaching a treatment plan. Excited that everyone has said fantastic things about what this experience will be.

MD Anderson

I’m nervous because so far my experience, while limited, has consisted of two things. First, a fairly rude lady to whom I’ve been assigned for getting the appointment scheduled. She isn’t the friendliest I’ve ever met and is not great about returning phone calls. Second, my appointment is set for next Thursday morning, and it isn’t until then that I will know how long I have to stay in Houston. Talk about inconvenient for the type-A planner.

But, back to being excited (since that is a better thing to focus on) … in the Mercy system, I started with the breast surgeon. She is the one who gave me the beginning of the plan with intentions of passing me off to the oncologist afterward. At MD Anderson, the lady told me with the size of my tumor, they will start me off with the medical oncologist who specializes in breast cancer. She will determine the course of action, then I will (so I hear) start a week of tests and visits with other specialists. I’m feeling pretty happy that my second opinion will have a different approach/perspective. If they tell me the same thing Mercy tells me, I’ll feel pretty confident.

My surgery with the doctor here has been rescheduled for October 31. Unfortunately, she only does these surgeries on Wednesdays. I might not be back from Houston on the 24th…and if I push it to November, I’ll feel too much like Kristina in Parenthood (who got diagnosed the same day as me, by the way). So Halloween, it is…assuming I don’t decide to go to MD for my treatment.

On a lighter and more funny note, we had parent/teacher conferences tonight with Ty and Bryn’s teachers. Bryn’s teacher told me that she knew I had cancer because Brynlee came to school and told the entire class that her mom had cancer, but she wasn’t going to die … but she WAS going to lose all of her hair.

Ty’s teacher was grateful for some clarification. A few weeks ago, she assigned a book report to Tyler that was due on October 9. The next day (most likely the day after we told the kids), he came to school and told her that he wasn’t sure he could turn it in because his mom was going to have cancer that day. She asked, “Does she have an appointment or something?” Ty said, “No, she’ll just have cancer on that day so I’m not sure if we can get it done.”

And that, folks, is why you tell the teacher before you tell the kids.

 

 

A new friend, a way to cope and a way to help Jenny

We met a new friend last Sunday.
homesub1Judy from our church — Acts 2 United Methodist Church — stopped by to give Jenny a gift. Before Sunday, we did not know Judy. We actually recognized her immediately as someone we often saw at church services (especially before Acts 2 began offering a third service on Sunday — an early one; I don’t think Jenny likes getting going as early as Judy on Sundays).

We recognized her as a friendly face, but we didn’t know her.

But that didn’t stop Judy from going well out of her way to get to know us.

Judy called Jenny and wanted to talk to her about surviving cancer. She didn’t sugar coat anything, but she did make it clear that you can have good times in your life even while undergoing treatment. Judy is a survivor — first leukemia, then breast cancer.

She told the story of how her husband had bought her a stuffed bear as she began treatment years ago. She brought the bear and let us hold it.

It was heavy. That’s what happens when you attach dozens of metal items to a stuffed bear.

Judy told about how her friends and family offered pins, key chains and other assorted items that she could pin, glue, sew or otherwise attach to the bear. As she went through the four years of treatment with leukemia, and then — years later — the year of treatment with breast cancer, she kept the bear with her. The attached items helped remind her of all the people praying for her from all aspects of her life and from all around the world.

So here is the gift Judy gave to Jenny:

photo (4)

 

It’s not a Teddy Bear. It’s better. It’s a Pillow Pet. (Words cannot describe how excited Brynlee is about this development).

Jenny is excited, as well. She likes the idea and plans on using it just as Judy described.

So she could use your help.

If you would like, we’d love to attach items to our new pillow pet. A pin, key chain or something similar that’s meaningful to you, Jenny or both — or it could just be something that looks nice.

As Judy says, each attached item represents a prayer. We already know there are lots of people praying for Jenny. That feels really good to our entire family.

The visual reminders and the soft pillow pet feel really good, too.

 

P.S. — if you want to mail it to us, that would accomplish two things. (1) It would successfully deliver the item to us; and (2) it would give me reason to walk to our mailbox and allow me to rethink my plan to cancel my mail, thereby avoiding an interrogation from the postmaster general.

Our address is 908 W. Mid Iron Way; Edmond, OK 73025

(In-person deliveries are welcome, too.)

Two steps forward

I can deal with anything I will have to deal in this ridiculous adventure. I feel confident about that. However, I feel like I reserve the right to be bothered by things that are trivial in the grand scheme of things.

One of those things is that I won’t be able to get reconstructive surgery until after chemo and radiation. The surgeon estimated that to be a year from now. For some reason, that REALLY bothers me.

We faxed all of my medical records to MD Anderson this morning. I am waiting for them to go through them to make sure everything is there. Once that is done, they will schedule my appointment. They are looking at the third week of October in scheduling right now. That means that I would need to reschedule my surgery up here in order to get a second opinion down there.

One of the positives about going down there is that the surgeon, plastic surgeon, oncologist, etc. all work together as a team to develop and implement your treatment plan. Not so up here. It is very disjointed.

For instance, the surgeon yesterday told me that I would likely need radiation due to where the tumor was located; therefore, I cannot get reconstruction at the time of the mastectomy. However, she has never spoken to my oncologist (neither have I for the record – that appointment is tomorrow). Based on her assumption, she doesn’t intend to engage a plastic surgeon until next year when the chemo/radiation is done.

I just feel like she/we should at least ASK if it is possible that I won’t have radiation before we make that decision.

Going to MD Anderson will likely tell me the same thing. I mean, she has good logic behind why I would need radiation – it is likely sitting on my chest muscle because the tumor is very high up on my chest. They won’t take out the muscle so they need to do radiation to make sure they get it all. I get that. I would just feel better if she, the oncologist and the plastic surgeon had discussed and agreed that this is best.

But I also don’t want to wait until November to start what will dominate a year or more of my life. Let’s get this thing started!

So, I am postponing my “MD Anderson-or-bust” decision until they call me back with an appointment day. It isn’t like I can do anything now anyway.

Big decisions, folks. Big decisions.

Update from the surgeon visit

Just a quick update for everyone…

We met with the surgeon this afternoon. There are a few things that we learned:

 

1) My tumor is highly receptive to estrogen and progesterone. It is HER2 negative. In essence, this is a good thing because they can give treat it easier.

2) The surgeon says based on the fact that it is in multiple places, I need to do a full mastectomy. A double mastectomy is also an option for me should I choose to go that route. Positives are that I am at higher risk to get cancer on the other side, and this would reduce that. Also, symmetry in reconstruction would be better.

3) Bad news is that she says I will have to have radiation (though she is not the one to make that call – we meet with the oncologist on Wednesday for more info on this) because it is so high up and probably on the muscle on my chest wall. While they will remove the tissue, they will not remove the muscle so they will likely want to do radiation to get rid of it there. Getting radiation means that I am not able to get reconstruction at the time of my mastectomy. The radiation reduces the elasticity in the skin which means that a plastic surgeon would have to remove skin from other areas (tummy, underarms) and use that to replace the damaged skin during reconstruction. This means I have to go through chemo and radiation before I can get reconstruction surgery. That was hard to hear.

4) Based on the size of the tumor, I am at least a Stage 2. We will know more about stages when she tests the lymph nodes. Good news is that the MRI didn’t show anything that made her think it had made it there. She also checked me today to see if there was swelling  and all was good.

5) Breast cancer can spread through the lymph system or blood. Either way, the chemo will kill any renegade cancer cells that might have escaped the primary tumor.

For those I have talked to, I gave myself an self-imposed deadline of October 17 for surgery. I pulled this date out of NOWHERE, not even knowing if that was a weekend. This arbitrary deadline helped me focus and begin getting things ready at work and at home. Well, we decided to schedule surgery today just so we can have that booked while we decide on second opinion options. When we sat down with the scheduler, she said that the doctor only did these types of surgeries on Wednesdays. That means we could do October 10 or October 17…

Bizarre coincidence, I’m sure, but as much as I’ve been proclaiming that October 17 is my surgery date…it sure seems like a sign! We went ahead and booked that date.

The doctor said I’d be out of work for about 4 weeks, but this would be based on my stamina not on my pain. She said most people just run out of energy fast.

So, as of right now, I am scheduled for surgery in the early morning on October 17. I don’t know if we will keep this date, but it is good to have something on the books. We have a lot to think about and consider, but unfortunately, my brain shuts down under stress. It is an early bedtime for me tonight, and we will make major decisions tomorrow.

Continue reading