Today is a milestone.
Sometimes it's a challenge to muster even a smile as an acknowledgment of a feat accomplished. That was the case today. While definitely (and don't underestimate the definitive qualities of that "definitely") relieved to be complete with the toxic infusion portion of the program, it's a bittersweet victory; if one could even call it that.
Doing what needs to be done has been the name of the game for more than a half dozen moons. The cumulative effects of everything (and don't underestimate the all-encompassingness of that "everything") has Deb (us all, really) craving, more than ever, the normal that once was - as if we were ever what anyone would consider "normal".
Enough pontification...here's the scoop:
Today, Deb got her final administration of Taxol. She's now been through 24 weeks of receiving chemo infusions. As the time has passed, we've adapted into this new normal, which consists of Deb resting A LOT, and Ryan spending more and more time with her Nini; and both of them are loving the opportunity to bond every morning and then some. All of that, combined with the winter rains have made for a rough bunch of weeks around here. I continue to tangent. Let me talk about Deb and her treatment; where it is and where it's going....
Next week she'll get a CT scan so they can map out the points to radiate. 2 weeks after that she'll begin radiation therapy. This is a really high powered, very focused laser kind of thing that blasts the specific area of the tumor and inflicted lymph nodes. It's like 10 minutes a day, every weekday for 5 1/2 weeks. The treatment is very different from the chemo therapy as the radiation is extremely localized; hence no full body pain/sickness. There are side effects however, which include skin burns or rashes,swelling, scar tissue, and continued exhaustion. I'm sure some of you (Jennie B) know WAY more about this than us, but that's the gist of it.
As for the residual effects of the chemo. The doctor this morning said that it's likely that Deb won't feel at full strength for some months yet, but it's a relief to know that as I type this we have no plans of infusing her with more toxic chemicals - just radioactive material...what a relief.
In addition to the radiation therapy, Deb will receive Herceptin, a hormone infusion, every 3 weeks for the next 10 months.
To sum up the past seven plus months, we've gone through biopsies, diagnosis, surgery, recovery from surgery and chemo. Still left to be done is radiate and hormonicize and live and love for years to come.
We're very much looking forward to a time when we're not feeling so stretched thin; physically, emotionally, financially...it's really affecting our lives through and through, and we're concerned (obviously) about how the ill effects of this is treating Ryan during this most developmental period of her childhood. It's the only life I know, I wouldn't trade it for anything - I love my daughter more than anything in this (or any other) world and it brings tears to my eyes that she has to see us being put through the most rigorous test of our lives. It's more frustrating than words can spell to watch your offspring watch you in what you can be certain is not your most flattering moment (after moment, after moment). I'm sure it's something all parents go through, as no life is without hurdles, but I can't help but be self-centered here - all about me, all about my family...hello?
I guess I should blog more and I wouldn't feel like I need to sit and tell you all every little thing that happened in the past however long it's been since I've posted. But frankly, free time is a luxury not known much around these parts lately.
We're exhausted, tired of this whole thing, but we're persisting and getting beyond every hurdle thrown at us. Deb made it through chemo so swiftly - never missing a treatment due to low levels; having horrifying side effects yes, but no hospitalizations...perspective is so key. And I'm trying with all of my might to put exhaustion and situational frustration aside and continue to maintain a positive outlook for many more happy years with my family. It's going to be really nice when the regular visits to the doctor are behind us and we can take a well needed vacation. Until then, I'll settle for the end of the winter rains - the hills are green and I'm ready to be spending more time outside without getting soaked.
So, with all that, I want to throw a big ol' jumbo hug out there to anyone putting their eyes on these words....We all love you so much, and love that you're out there thinking good, positive, healing vibes towards us. Thanks to each of you for your friendship and support always.
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8 comments:
It feels weird to say this, but I am so glad to hear you were able to do chemo today. I had heard you were sick and I was worried they might not let you do it. Glad to hear you were able to get your weekly dose of toxins.
I wouldn't begin to assume what this experience has been like for you. But I think going through something like this and having to watch your child being affected by it must be one of the most difficult parts. I am so sorry that you have been robbed of so much time with your beautiful Ryan. I know life will never be the exactly same for you, but I am REALLY hoping that you will soon be in a place where you can have fun being parents (although I hear that starts when they are old enough to move out).
Thanks again for sharing your experiences with all of us.
Thanks so much for such a beautiful update. I have been thinking of you guys all day, knowing that today was the last day of a LONG road. And while a new road starts tomorrow, you know you have made it this far and for that you have my never ending admiration. What you have been through would shake any family to its core...the fact that you have come through it so beautifully is testament to the strength of the love you have for one another, your strength as individuals, and your commitment to your family. I can imagine how angry you must feel at having lost this time with Ryan and your concern as how this will all affect her (though I don’t presume to fully appreciate the gravity of your emotions). However, she is a strong little girl with incredible role models in both of you…she will get through this and will be stronger for it!
As always, you three are in my prayers. I hope that you find the time to celebrate this victory (and yes, this is a huge victory). I hope that this next part of the journey is a easier road. And I am looking forward to celebrating with you once this is all over!
Much love!
Jacqui, Chris and Liam
WE LOVE YOU TOO FINFERS!!!!
-Brett & Katie
Wow. Howie thanks for sharing and letting us see just a small piece of your life. First Deb, cheers to your last chemo blast. Perhaps you will now have a little rest for the body and mind. Howie thank you for your honesty in telling your story.
Being a parent is so hard under normal circumstances. Given the cards you've been dealt I can't imagine how difficult it has been. Ryan is strong and this experience will make her even stronger and teach her more about her family than anything could.
My loves goes out to all of you. I hope this second chapter is healing on all levels.
Thank you for sharing this very personal journey so honestly, poignantly and openly with your friends, family and fan club. I am constantly hit with the realization that the most basic truth (ie. simply being ALIVE) that I take for granted on a daily basis is a conscious and valiant struggle for others in this world.
I have told Deb this before, but even on what you feel are your "worst" days as parents to Ryan, you are both still SO far ahead of the rest of the pack of mediocre parents who simply don't put out the extra effort...not because they are fighting for their lives, but just because it's easy to be lazy.
Continued love and strength to you all, as you continue to fight the most important battle of your lives.
love, Nora
WAY TO GO DEB! I am so glad you can put some of this behind you and move forward. I am cheering for ya and wishing you some sunshine out your way.
big hugs from me to you. don't forget, i am here for you!!
i love yall - jennie
Thanks for the blog update Howie. I was glad to run into Deb several days ago. She said she was feeling crappy but I thought she was looking real good, was glad to see her out in the sunshine. Hope I can see all of you soon. stay strong, dan u.
I've never had the pleasure of meeting you, Deb, Howie, or Ryan, but I'm Sarah D's sister. I know how important you are to Sarah, and how much you have been there for her, though, and that makes me feel like I know you. She mentioned how inspirational your blog was, and I have been reading up and thinking about you over the past couple of months. I admire your strength, respect your authenticity, and am sending good vibes your way.
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