Disappointed, frustrated, sad, scared and a lil angry...

[jml]

Oh my Gosh, you guys. I can't tell you how your words have lifted my heart, restored my confidence and empowered me. It's been such a difficult couple of days, full of frustration, anger, tears, disappointment - pushing me to a question that I've only asked once before,
"What if I just quit?"
Yesterday brought some good news, but some still unresolved.
I am definitively switching Rad Oncs - back to the Rad Onc who treated me for 2 supraclav nodes in 2008. She's at a different location, only a mile from my house. Back in 2008 I used to walk my dog to rads, tie his leash to a bench, go in for treatment and minutes later, fetch him and walk home. She actually called me yesterday morning and asked if I wanted to transfer my treatment to her care. Ofcourse I said "Yes, please!" I filled her in on what happened with the other Rad Onc, including the fact that they told me they wouldn't be able to start me until after Christmas because of logistics/their schedule, etc. She said that shouldn't be and that she can start me on Thursday, tx on Friday, Saturday & Monday.
I am anxious to get started because to wake up each morning and see these symptoms of SVCS- the facial edema, swollen hands, distended jugulars, prominent veins in chest (even after sleeping propped upright) and the instant increase of pressure in my head when I bend over to feed the dog, load the dishwasher or crouch down, is unsettling.
My question for Dr. G (good Rad Onc) is, Does 4 days of tx buy me a extra few days (2.5) after Christmas to be with my family in LA? And on a longshot, does it buy me 8 days to also go with everyone to Tahoe, as is the original plan? I don't know what the answer is, but I do know what I WANT it to be. Will just try to temper my hopes, so not to be too let down if they go unfulfilled. Regardless, I WILL have an answer today.
As for the IR consult, I didn't get to see anyone, but the NP had the "IR team" take a look at my case and they recommend Rads first to shrink the tumor, because "the vasculature could collapse even with the stent in so shrinking the tumor first would be preferred." I feel so unsatisfied with this answer from the nameless, faceless IR team because I didn't get to ask any questions, like how are you going to keep me safe and healthy until rads can effectively shrink the tumor and decrease the threat on my SVC & heart? Since they're recommending Rads 1st & the rads are effectively shrinking the tumor, why then would I circle back and have the stent? That response just doesn't sit well with me. And let's not forget that the consent form I signed the other day with the Rad Onc Resident did state that if I turned down Rads that "treatment options include, stenting."
It's like they won't recommend the stents unless my symptoms increase and I end up in the ER. So maybe I'll sleep flat tonight, or better yet, up-side-down, wake up tomorrow with more severe edema, go to the ER and they'll admit me!
As you all have recommended and encouraged, I put a call into the IR (instead of going through the NP as I normally would) that did my chemo embo in 6/10, & talked to his secretary. she noted my specific question/request and said he was on a conference call, but would give him my message to call me back.i asked about his schedule and she told me he's doing a couple of procedures over the next few days and not away for the holiday. Again trying not to over committ to my own agenda, but will feel better getting direct answers from the source.
Oh, one last thing (I know this very long- thank you for indulging me) one option I am considering is throwing caution to the wind and delaying radiation until after the holidays, so that I get to have Christmas, the Christmas suprise that I have planned and even go to Tahoe as we originally planned.
Thoughts, comments, opinions?

I'm putting on my Fighter face on today and putting Miss Congeniality in my back pocket until I feel all my questions are answered completely and sufficiently.

Holding on to the Faith~

Jessica

[Paula O]

Jessica,

I'm so glad you are switching radiation oncologists and things are coming together to get you some help very soon. Sometimes cancer puts people between a rock and a hard place and it's hard to figure out what the best choice is among the different options that you wish you didn't have to choose from.

There was a very interesting session I attended a couple days at the SABCS where doctors stood up and presented difficult cases for the feedback of an expert medical panel. In one of these an oncologist described his very sick breast cancer patient who had been fighting a hard fight and she wanted to go on a trip which would mean a lapse in her treatment. The consensus was that sometimes vacations and enjoying quality of life is the best medicine for a patient.

I hope that it works out for you to enjoy a special time at Christmas whether it's at home or going with your original plans of this trip you've been looking forward to if it looks safe to be able to do that.

Wishing you the very best,

Paula

[StephN]

Dear Jessica -
Starting radiation on that node tomorrow is a good plan. You say you can get in three treatments before Christmas, and only the "node knows" how much it will shrink in that time. Looks like a wait and see as no one can tell what shrinkage could occur in just 3 treatments.

Not having had rads myself on a node, I do not know how they behave as far as beginning to shrink. I just think back to Brenda with her node pressing on esophagus, and it did take a while to get her voice to stop rasping.

I had thought of cyberknife as a possibility. You did not say what kind of rads you will have.

Good question as to why the other team says to stent afterwards if needed. Perhaps the vein will have a "dent" in it that will not immediately resolve. Hope you will be able to ask that question in the next day or so.

Still seems like getting a consult with a vascular surgeon to work with the other team may be good additional brainpower.

[fullofbeans]

Jessica

I know what you mean about fighting the system, young docs ect.. I experienced it many times.

It seems to me that your priority is to see your family, but at the same time you dont want to end up in ER with SVC synd.

It also seem to me that they(IR/Onc) see the stenting as a delay to the radiation ("the vasculature could collapse even with the stent in" ) not a a contraindication.

Stenting is not a big deal (you are home in the evening) could you have it organised close to where your family is on hollydays in LA for example. Since you are still to see a IR why not organise it there and as soon as you are back you can resume radiation? (i.e do the radiations before christmas and buying more days with your family and doing something that seems needed but seen as a delay)

The mesh of the stent to pushes on the wall of the vein so even if there is a dent that goes with treatment it should continue presing on the vein from what I understand. It seems to me that your symptom warrant stenting now as oppose to a wait and see approach.

I do not know how easy (or not ) it would to organise such thing in the states..

Stay strong, again you are amazing

[7andcounting]

Jessica, many of us feel exactly as you do---we just want Christmas to be as normal as possible and share this time with our families making memories while we can. I am praying that you are able to get the help that you need, so that you can relax and not be spot in the middle of a tornado on Christmas day. I pray you will be enjoying your family and having a great time. You have to advocate for yourself, b/c no one else does it like we do---b/c WE want to live! I can't wait for your update, b/c I think it's going to be a positive one.

[chrisy]

Amen, denise!

[Laurel]

Dear Miss Congeniality (opps! I mean Warrior Woman!),

Jessica, I cannot blame you one bit for wanting to get to L.A. and Tahoe for your Christmas surprise. I urge you not throw caution to the wind and forgo the radiation until after Christmas since you are rather symptomatic. Further, not knowing your location in relation to Tahoe or L.A., I am wondering whether you will be flying to those destinations? Just thinking of the effort to maneuver the airports and even the pressure within the cabin of the plane and how you may be affected in terms of your shortness of breath and swelling.

I will keep your needs in my prayers! This is the season of miracles!

[BonnieR]

Laurel makes some very good points. I see that the Tahoe area has been having dicey weather. You would not want to get caught up in that
My husband has a saying "sometimes the situation is smarter than we are" and it will prevail despite our wishing otherwise...
Keep the faith

[jacqueline1102]

Hi Jessica,

Getting a couple of treatments in before the holidays and then continuing might be doable. I would ask the radiation oncologist who has been treating you since 2008 and is now back on your team what her opinion might be. I hear you about having a normal holiday. I have told my team I will have scans after I get back from St. John. My thoughts are with you and I wanted to thank you for reaching out to me when I was first diagnosed. Peace to you, Jessica. You have provided so much support to the women here, perhaps more than you may realize. You are an amazing young woman.

Take good care,

Jackie

[Pray]

Dear Jessica, I am hoping and praying you have a very blessed Christmas with your family. You are an amazingly strong woman I admire and appreciate dearly. Peace my friend, Nancy

[StephN]

Dear Jessica -
How did your week wrap up? With a nice neat bow or in newspapers with a rubber band around it?

Hope you were able to work out a good scenerio for you.