Next steps...

October 30, 2012

I don’t feel very funny right now…sorry to disappoint.  If you are just joining us, I’ll step it up next time. Promise.

We spent another 5.5 hours down at Anschutz today and we have a solid surgery date and some solid info for you today. 

Surgery will be next Wednesday the 7^th of November.  She will have a unilateral mastectomy, using the cadaver tissue to complete the reconstruction.

We don’t have an actual time of check in and surgery next Wednesday.  The anesthesiology team will call us 3-4 days prior to surgery to give us the final details and tell us when we will need to check in and when this whole little dance is gonna start. She will be the second of 2 surgeries performed that day so I guess that’s the reason they don’t know exactly what time they will start her.  Whatever. Sorta pisses me off to be honest, but there isn’t anything we can do about it. We just want to know…ya know!?!

The surgery will be 4-6 hours long, she will be in the hospital most likely just one night, possibly 2 and this is apparently a rather painful surgery as you can imagine.  The length of the hospital stay will depend on her pain level and how she is doing with all that. So what you’re telling me is that next Wednesday is going to suck. Ok.

She can’t eat anything from midnight the night before, clear liquids only after that up until 2 hours prior to anesthesiology at which point she can’t ingest anything.

We have to go down the day before to have some radioactive crap injected into her which is what they use to perform the Sentinal Node Biopsy.  The Sentinal Node Biopsy is a process by which the determine the path the cancer would take if it were spreading beyond the breast.  The lymph nodes are the main path through which it would travel, and whichever lymph node lights up (radioactively speaking) 1^st, that is the one that the cancer would go into first as well.  So, they take the first 2-4 lymph nodes in that chain and have pathology done on those 2-4 lymph nodes to determine if there is cancerous cells in those nodes.  If there are, they will look at taking the whole of that community of lymph nodes apparently. So that would suck too.

She will have a drain in her body for 2-3 weeks after the surgery which yours truly will have to empty and log the amounts because once the total drainage in a 24 hour period is less than 30…somethings (cc’s, ml’s, gallons…something)  that is their indicator that the drains can come out. 

She will apparently be on some great painkillers (which for the right price can be purchased from a windowless white van behind our condo complex beginning 3 days after surgery…thank God for unlimited refills) because this is a painful surgery.  She will be out of work for at least the time during which she has the drains in and also because of pain management.

Another thing that we did was talk for 2.5 hours with the fertility specialist – buckle up for this one, the word sperm was thrown around a lot.  What it looks like is that the tumor is fed by estrogen and progesterone.  Chemo will put her into “medical menopause” where she will be completely infertile because of all the drugs.  There is up to a 30% chance that she would remain that way even after chemo is done.  So…we are looking at “fertility preservation” which is where they harvest eggs from her and either fertilize them right then (using my little spermies) and freeze them as embryos OR they take the eggs, deep freeze those suckers and then in 2 FRIGGIN YEARS when we are then able to have kids we defrost the huevos and inject them with the spermies. After a few days, once they have created life in a petrie dish they then shove those suckers up there into Adrienne’s baby-makin place and we get prego that way.  Either way, there is no extra benefit to doing it one way or the other.  We tend to lean toward freezing the just the eggs and fertilize down the road because of our belief that life begins at conception and we aren’t really hot on the idea of freezing life for 2 years. Ain’t gonna work.  So… Oh, and by the way, YES, they have to also harvest my little swimmers which sounds like a horribly embarrassing process but I can take that one for the team.  It is interesting though because they can sort through them and pick out all the little Ryan Lochtes that will give us the best chance of having a child without any complications, etc.  They can select the sperm that they want and avoid the ones that have 2 heads or 2 tails or weird sizes or whatever, so that’s good.  Wonder if they can pick the one that won’t give my son male pattern baldness like his dad?

Did you know that a man produces sperm at a rate of 1 million per heartbeat?

The actual harvesting process is 8-10 days long, she will be on a synthetic Follicle Stimulating Hormone which will tell the pituitary gland to tell the ovaries to fire up the 20-30 eggs that it normally would during her cycle (only she isn’t on the cycle, they are creating it medically essentially) and then the doc will go in and intercept all the ones that get all fired up and those are the ones that they will harvest.  During this process, the byproduct of eggs being stimulated is that estrogen is produced.  That is obviously bad since the cancer dines on that as well so then she will take a drug that stifles that production.  This process, if we decided we can take on the cost and that it is worth the risk, will happen between surgery and chemo and we will have to come down to Denver 5-6 times during that 8-10 day period for monitoring and such. That is a rough thing to swallow, but small in the grand scheme of things.

There is a healthy price tag on this whole process, $10k-$15k to harvest, all the medicines etc, plus a $450/year cost for storing the eggs once they are out. I threw up in the back of my mouth a little when they said that, but if it’s the difference between the world having Jeydriennes or not, then I think we all agree that it’s worth the cost. J

Prayers:

-My darling wife is WAY stressed out by all this…her darling husband is running a close second.  This took on a whole other level of real today as we realized much more acutely how big a deal this is.  Pray please that she would be able to live in peace with this, to lower her stress, that I would be able to match her and even surpass her in that so I can support her.  We need to lower her stress because that is certainly not helping her. It will be better tomorrow once we have slept a little and the shock of today has worn off a bit.

-That all the communication would line up – There are several things that have been dropped today that we would not have important answers to had Adrienne not been a wonderful advocate for herself and asked about. We are especially nervous about that since the biggest step in this process in now in the hands of a couple huge teams and there are so many things that are up in the air.  We know we are having surgery but we don’t know when, where we have to go, how long it will be, who the anesthesiologist is who will be heading up the team, etc etc etc. It’s a little scary and yes we are a bit jumpy about it all, I’m sure it will line up but…

-For sleep and rest in the next week – we are worn raw by this and good quality rest is far more elusive than it normally is. Its counter to what we need obviously which sucks – we need MORE sleep and MORE rest and MORE R&R but are actually getting less. We are tired and overwhelmed and scared and a little numb and a lot of raw.  Raw is a good word, just abraded by all this.

-Please pray specifically against those crappy thoughts and fears and little lies that have a tendency to weedle their way into our brains.  That has been taking a hold a lot lately…even though we know it won’t spread any notable amount in a week, every time something above her ankles hurts she gets afraid it’s the cancer spreading. There is so much fear surrounding the risks associated with all this stuff and they make damn sure you know EVERY possible risk associated with any procedure performed…I mean any possible risk, its kind of ridiculous. 

Dates:

                -November 7^th…need I say more?

Needs:

-Now that we have a date, we will need food.  If you are willing, a woman named Brenna Strait (a co-worker of Adrienne’s) will be getting in touch with everyone on this list through a website (the name of which I do NOT remember even though I thought I would) that coordinates these sorts of things.  My basic understanding is that those of you who are able to help out will go on the site, pick a day that you can help out and input your info and sign yourselves up.  On the site, there will be information about her dietary needs and restrictions (which I assure you is a treat for all) which will help you in making something that the little lady can eat. Once you have picked a day, you will get a reminder email a few days before your day reminding you that you have in fact signed up for said day. There will be details for those of you who are inclined to make something and also for those of you for whom it would be easier to buy there will be a purchasing list as well.

-Flexibility – please be flexible with the visiting.  This may be old-hat for some of you, but I’m realizing that there will be times where she will be up for visitors and other times where I’ll meet you at the door with a warm hug and a thank you and that will have to be it.  What I mean is some or most of you may know that already, but if anything its good for me to say that.

-They told us that immediately after the surgery, family will be allowed to go in and see her.  I would think that the next day she will be up for many more visitors.  More on that as we know more.

Well kids, that should about do it for now.  There are still a lot more questions and a lot more worries and blah blah blah.  As far as the forest goes, 1 week is short.  When we start to look at the trees, it feels like a super long time and we are ready to get this thing out of her. Basically in the grand scheme a week will have no noticeable effect on the outcome but it feels like foreeeeeeeever.  The last 3 weeks since we got the diagnosis however have been the longest decade of our life and we are ready already to get moving and take action.  We have spent 3 weekstalking about what we are going to do and haven’t actually done a damn thing.

Here is my PSA for the day – we are learning so much that it is so incredibly important to be your own advocate.  Take control of your health, take control of your knowledge and find out what you need to know.  Ask questions, ask them again and just to be safe ask them a third time. Do NOT be afraid to stand up for yourself, to make known what you need and do NOT be afraid to take charge of your treatment.  Take notes, record stuff, be your own biggest advocate.  No one else will be as strong and as good an advocate for you as you.

We believe we are getting the best treatment by getting our care at Anschutz.  This puts a lot of strain on our car, on our time etc, but we believe that overall it’s the best choice.  We are happy with that, confident in all this (as much as we can be anyway) and READY TO GET MOVING!!!

Thanks for your love, your continued support, the cards, the letters, the emails, the flowers, the gifts…we love you and so appreciate it.

Love,

Jeydrienne