Ha! Nice to see you, it's been awhile :-) I've gotten several comments about the fact that no one has gotten an update in a few weeks and how there must be something wrong since I haven't shared anything about her...rest assured, there is nothing wrong (well, you know...) we are just in a holding pattern for right now until the fertility stuff starts and its just been really nice to try to regain some normalcy in life. We've not felt overly successful in that endeavor, but its been nice to have time to try. We haven't had to focus so much on it lately, or type updates and talk about it non-friggin-stop which has just been very cathartic for us...my apologies however that I haven't kept you fine folks in the loop over this last few weeks of said holding pattern.
However, that having been said, this is only the calm before the storm. Here's the kibble, take a bite if you like:
Fertility - I think I've explained this already, but here is a refresher: Fertility preservation can only begin when her period does, because the body needs to be already in the mode of stimulating follicles (that's what the ol' period does) and what the process of fertility preservation does is make that whole natural process of stimulating follicles go nuts basically. She will be taking a ton of hormones (Follicle Stimulating Hormones to be exact...can you guess what they do?) that will make the body prepare far more eggs for ovulation than it normally does. Basically speaking, when a woman has a "menstrual cycle" the body is waking up multiple eggs and making them get dressed for school, but then choosing only one to get on the bus... The process of fertility and the hormones involved make quite a few more than normal get dressed and then the doc will go in and mechanically extract all of them that have gotten dressed. That is called egg retrieval and that will be done sometime between 7-14 days after the period (and the hormones) start.
Here's the sticky part of all this - if she starts any time before the 26th of December we have to wait until January's cycle or take essentially what is a birth control pill to make her body postpone it until the 26th (think "snooze button") because the endocrinologist (the person who will take the harvested eggs and freeze them) is out of the country until the 4th of January. The really stupid thing is that we have to switch insurance providers and chemo has to start after fertility (that's the whole reason we're doing fertility preservation, that chemo will seriously mess with her body and hormonal functions and they may not ever get back to normal) and since its now impossible to start chemo before we switch providers at the first of the year, they are trying to pull some nonsense about how since she hasn't actually received her first chemo infusion and wont before the insurance switch then they wont cover it under our current docs. My thought was to tell that crap to the port that's installed under her skin with a line straight into her carotid artery, through which they will inject the chemo drugs, but...anyway, more on that later.
To wrap the fertility thing - we really want to do fertility preservation because of how the cancer drugs put a woman's body into medical menopause, and there is up to a 30% chance that she may never come out of it (depending on the doc you talk to). Adrienne also has Polycystic Ovarian Syndrome which means that whether or not she ovulates on a regular basis is highly debatable, and by the time chemo and the 1-2 years of the hormone suppressant Tamoxifen that she has to take will be done, we will be pushing 35 and still don't even know if we can get pregnant naturally to begin with. Too many risks, and remember...Jeydriennes are on the line here. This is important.
Insurance - We selected the docs that we did because our current oncologist is one of 3 in the country who specializes in young womens' breast cancer care. Translation; all she does is treat breast cancer in women under 45 years of age. Kaiser has denied our request to stay with her because they claim that she can get the same care and chemo infusions from one of the Kaiser docs. (Ps - neither of the other 2 young women's specialists are Kaiser docs) On one hand, I'm sure that's true in the sense that any Joe Blow can stick a needle in and inject a drug. NOT just anyone can do so in a manner that takes her young age, aggressive cancer and drug sensitivities into account. Adrienne talked at great length with the Patient Care nurse in the oncology dept. at Kaiser and was borderline horrified with their rather cavalier approach to chemo infusions; things like the fact that she would meet the oncologist and an hour later begin the infusion. This is an issue because of the obvious discomfort with not knowing one's doc at all and then that doc injecting you with poison, but also because it is vital that on the first chemo infusion you have a steroid in your system for at least 12 hours before you get the infusion to help prevent possible anyphylactic-like allergic reactions to the drug. The Kaiser nurse airily said that they would just pop it in the IV with the chemo drug. I think NOT. Kaiser also tried to pull the "common type of cancer" card, implying that that's why they wont allow us to stay with out current docs which of course we called shenanigans on. It may be a common type of cancer, BUT NOT IN SOMEONE WHO IS AT THE RIPE OLD AGE OF 32!!! So kiss my booty on that, thankyouverymuch.
They have been less than supportive, and Adrienne is extremely frustrated, aggravated, anxious and pissed about this whole situation. Let me rephrase that - the reps who have come to her work to talk on behalf of Kaiser have been wonderful. The people at the home office who actually make these decisions have been significantly less than wonderful.We both of course are having difficulty with this, but she really is. Its frustrating to balance the whole thing because on the one hand, at least we have insurance and she will get the cancer care one way or another. There are many who can't say that, but also we believe that God led us to University Hospital and this specific team of specialized cancer docs and so its really frustrating to think that we might not get to finish there. That having been said, God has not let us down yet and we do know and continue to operate as best we can in the fact that He has the best in store for us. I think a lot of the difficulty in this, especially for Adrienne is the unknown of what will actually happen. She has been feeling extremely overwhelmed because this is just one more thing that makes her feel like she's been shot at and missed, sh...pooped at and hit. Her question quite often lately has been why this and why now...?
There are so many little things that are affected by this fertility/chemo thing - we have a great friend who is getting married in January, and if we had to wait on the fertility preservation until her January cycle, there is a great chance we would miss the wedding because we have to be here to visit the fertility doc every other day during the process. Tickets have already been purchased, and even though our docs have assured us they will write to the airline and get it taken care of, its an awful thought to have to miss that wonderful wedding. We are hoping to go away for the New Year's weekend, but if fertility starts on the 26th as would ultimately be the best, that means we will probably have to miss that weekend away with the fam. In the grand scheme of things NOT a big deal, I know. However it does make one think, and struggle and its very easy to just get pissy about the whole dang thing.
We've noticed lately that our fuses are shorter with each other, and I think just with life in general. Dare I even say, we have caught ourselves stumbling through the muck of self pity, MAYBE even throwing a little party every so often...its a terrible thing, although I do think a natural thing but it just never pans out. A pity party is, without fail, like that huge kegger in college - the cops always get called, someone pees on the wheel of the cop car, gets arrested, and someone goes home with a black eye. Its never fun in the end.
PS - I've never had that actually happen...I've just heard stories.
So - on the positive side, she is healing extremely well! The pain is at a minimum (although not completely gone) and she has been sleeping better. Nothing about her is 100%, but it is so much better than it was 2-3 weeks ago and only keeps getting better. She has had 2 fills of the expanders that are making room for the permanent implants that she will receive after chemo, and that is a hilarious process to watch! So, they use this little magnetic stud-finder dealey to locate the port in each expander, mark it on the skin, shove a horse needle in there that's attached to a syringe the size of a missile silo and inject 9 gallons of saline into each expander. Its a mind-boggling thing to watch...they just get bigger. I mean, they get BIGger. So weird. She walks around now saying, "look at my boobies, they're so BIG!" To briefly quit exaggerating here, they inject 50 cc's at a time, which is 1.69 oz...its really not that much. However, in my defense that is almost 2 oz of fluid going UNDER HER PEC MUSCLE into a really expensive ziplock bag. It's just not something you see every day.
They will expand that cavity to a larger size than that of the permanent implant that she will receive once chemo is done, so that they have wiggle room in there I guess. Something like that. That means they'll bring out the silo 3-5 more times in the coming months to make room for that implant.
Weird process, this whole thing just really is. They forgot the "when your wife gets breast cancer" section in the user's manual we got when we got married. On the positive side, it has brought us closer to each other, to our families and allowed us to speak into the lives of several other women who are going through this. There have been several women who have spoken up and asked to talk to Ade, which she has loved doing and its given her great encouragement to be able to do that. Thanks for the courage of you women who I'm talking about to ask and get in touch.
Thanks to each of you for the unending support you've shown us. I know I say this every time, but its your dang fault I have to keep saying it - you keep checking in, you keep blessing us with financial help, you keep sending cards, you keep hugging us and seeking us out to talk and chat and love on us, you keep praying for us. So there...Not my fault. It continues to astound us how much we've been taken care of. There is no question that God's hand is on this. Adrienne made the point the other day that we've gotten every cent that we've needed to satisfy every bill that we've received so far. We've had people give us hundreds of dollars at a time to pay for the little pink plastic bracelets that my sister and mom had made as a fundraiser for us...those things cost some poor little kid in China 6 cents to make. I know its not about the actual cost of the bracelet and that's exactly my point - we have felt so loved and taken care of in this whole process so thank you so very much.
Merry Christmas to you and may God richly bless you and your family today, tomorrow and every day after. I sincerely hope you have someplace to go for Christmas that you are looking forward to. I also sincerely mean it when I say that you are welcome at our house with our families. My email address is jeremy.d.justus@gmail.com and Adrienne and I would love to have you join us this Christmas if you would like a loud and chaotic place to come hang out at for Christmas Eve or Christmas Day...drop me a line. Both of our mothers would love to set an extra seat at the table for you.
We would love prayers for the insurance transition, for her body to get its act together and start that whole menstrual thing on the 26th, for Kaiser to allow us to stay with our docs (We are going to appeal the initial denial to stay with our oncologist) for us to continue to get rest, relaxation, quality sleep, for healing to continue and for hope to permeate our lives, our house and our attitudes. Thanks again so deeply for how you have helped us and shown us the Lord. My prayer for you is that of a humble, broken dude who is far beyond words to express his gratitude - "Father lay your hand on the one who's eyes are reading this - allow those eyes to be opened to Grace, Mercy and Love. May the peace that transcends all understanding, brought and left only by the Son of Man surround these people and change each heart forever. Amen"
A shout out to my gurl, Maddy Rasmussen...love ya kid, we are so looking forward to meeting you when you move here next summer!!!
To Mrs. D'Avis's 4th grade class, you delightful people make our day! Welove our poster and there should be something in the mail coming your way. God bless you and He hears the prayers you pray for us, so keep 'em coming! We love you guys!
A wonderful man in church this morning shook my hand and said this to me, "the merriest of Christmas's to you my friend" and it just struck me as so sweet - so I say it to you; the merriest of Christmas's to you my friend, and my wife and I sincerely and deeply love you. Be well.
Jeydrienne
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