Yesterday Kendall & I met Dr Vicky Keedy who is my oncologist & the captain of my medical ship for the next year or so. She was amazing. We spent 2 hours with her, she explained everything in a way nobody else has been able to, she delivered the good news and the bad news with compassion but in a straightforward way, she answered all our questions. She was patient and nice, but she is very clearly on top of her game. To say I feel like I'm in good hands would be an understatement. Interestingly, she went thru residency with Dr Linn, my regular doctor and she is great friends with Lorraine, a good friend of mine. Small world indeed.
She explained that Ewing sarcomas are not terribly UNcommon in kids so all the research they have and treatment protocols are based on kids. She also said kids bounce back much faster than adults so these are some of the most aggressive chemo therapies they use. Ewing sarcoma is no joke; it is extremely aggressive in both local recurrence & distant metastases. The cure rate with the chemo I will be on is about 70%. I guess that's good? She has treated a lot of sarcomas in her career & they see about 6 Ewing's a year.
So, we learned that its terribly important to start the chemo as soon as possible; the longer we delay evidently the lower that cure rate is. Because of this, we will probably be doing radiation concurrently with chemo.
The chemo I will be on is a 5-drug cocktail. The first week I will get 3 drugs in combination over the course of 2 days. This one takes about 4 hours each day. The following week is no drugs. The 3rd week is a 2 drug combination which takes 6 hours a day for 5 days - yikes. The week after that is no drugs, then it starts all over. This goes on for 7 cycles or 7 months. Dr Keedy said very rarely do people make it all the way thru with no delays. Either the blood counts get too low or you get an infection or the side effects are too much & frequently an extra week is inserted here & there.
The side effects are everything you traditionally associate with chemo. Hair loss, nausea (although they say this is manageable with meds), could be weight gain or weight loss (with my luck it will certainly be gain), exhaustion, etc. etc. She said you typically lose your hair around the 3rd or 4th week, so I am planning to shave it on my birthday. My dear sweet husband already said he is shaving his too!
There are also some scary long term affects on the heart muscle & some other organs. But, if we don't do the chemo then there is an 80-90% chance the cancer will come back. What choice are you really left with?
The radiation we know less about until next week. Dr Keedy told us the side effects of that are typically more local like skin irritation, etc. They are unsure of whether they got good margins on the resection so the radiation is intended to try to prevent local recurrence.
Now, all this is based on an assumption that the breast biopsies are benign. That we will probably not know until late Friday at the earliest or Monday more likely. The results from those biopsies could change a lot. For example, if one of the biopsies is in fact malignant, I will most likely have a mastectomy. The question will be when to do that & we will let the docs fight that out. Dr Keedy would advocate for doing it about half way thru chemo. I'm pretty sure the surgeons will advocate for doing it straight away. We will cross that bridge when we come to it.
For now, I'm gearing up to start chemo on February 28th. I get the port placed in my chest on Feburary 27th. Next week, aside from the biopsy, the radiation oncology consult, hopefully having the stitches & drain removed, I have to have an echocardiogram of my heart - evidently this treatment is exceptionally hard on the heart & they have to ensure everything in there is working perfectly before beginning.
Whew, its going to be a long year. She said after treatment you start to feel better in 2 or 3 months & its a pretty steep improvement which plateaus & then it takes up to a year to really feel like yourself again. She emphasized several times that this is a chemo designed for kids and it knocks most adults on their ass.
There is no doubt in my mind we can do this. We will get thru this and be fine on the other side. We are handling it all well, we have ultimate confidence in our health care team, and we feel the love and support of all our precious friends and family. There will be some rough waters ahead, so please don't feel bad if we call on you for help, support, a shoulder to lean on, an afternoon out with the girls, etc. These are the times in our lives when we need all the support we can possibly get!
Today's photos are 2 of the many I will carry with me each day of this journey. Some will be printed, some will be in my phone or on my ipad, others I carry every moment of the day in my heart. These are the reasons why I'm embarking on this 28 weeks of hell. I have a hell of a lot more birthday cakes to make and crazy monster hats to photograph.
And there is one more...
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