Ryan is afraid of the big bad wolf. We're trying to teach her to be brave. It's a good lesson, and one I might do well to pay attention to. I guess you could say that I'm feeling pretty anxious about radiation starting tomorrow. It's just that the last week and a half has been really good...for me, for Ryan, and for Howie. I was starting to feel like myself again-or at least like I was on my way back. The last month or so of chemo worked me. I don't know that I could have taken much more, so it's good that it stopped when it did. In addition to all of the chemo side effects (or maybe due to the chemo side effects) I was just feeling so disconnected...from myself, my family, and all of you. I was angry and I was toxic. I guess I'm just not looking forward to feeling crappy again. I know that radiation is supposed to be a lot less invasive than chemo but I think, having really not felt well for the last 7+ months, and then catching a glimpse of what it feels like to feel normal, well I guess I'm just nervous. Albeit maybe unnecessarily so. I think going to the radiation "trial-run" on Friday spooked me. And now that it's the night before it's starting to sink in again. I'm doing my best to muster up some courage and be brave but admittedly doing so with difficulty. I have 5 and 1/2 weeks to wrap my head around this and get a firmer grip. Maybe I won't feel too bad. Maybe it'll pass quickly. Maybe I'll start taking more anti-anxiety meds.
On a brighter note, I've been told, by the few people I've talked to on the phone and seen in person, that I'm starting to sound like myself again. And I'll very quickly admit that the last week+ has been really good. I've been able to think straight, have energy to climb up play structures with Ryan, laugh, cook etc. I haven't felt this good for a long time. I've been spending a lot of time with Ryan. My mom had her hip replacement surgery on the 19th and was in the hospital and rehab facility all last week. She's back home now and is sore and hurting, but doing well. Anyhow, ever since I started chemo, my mom has been helping with Ryan in the mornings so I could sleep in and get as must rest as I needed. She's been a godsend, and absolutely necessary. Howie has been able to work from home when needed as well, and various friends (thank you-you know who you are) have pitched in throughout this whole ordeal. However, this last week was the first week I was an almost full-time parent again. My sister-in-law came out last weekend with my youngest nephew to help w/Ry while my mom was recovering (thank you Stacy) but she left Monday. Anyhow, I haven't been alone with Ryan for more than a few hours since September. But we did really well. Howie says Ryan is obviously happier to see me "back," I think so too.
I'm anxious to be done with all of this, I'm pretty tired of it. It will be good to be done. Until then, please keep me in your thoughts, send out some positive vibes and if you're so inclined, say a prayer for me. Just knowing you're reading this fills my eyes and touches my heart. Thank you all for being there for me and for my family.
Much Love,
Deb
Sunday, March 29, 2009
Thursday, March 12, 2009
Really?
It's a Thursday night and all is relatively calm here on Pacheco Ave...
Deb is up putting Ryan to sleep and I'm on the couch with laptop on lap goofing off with my latest obsession - facebook...what a distraction that site is. That I was just sitting here joining the Winkelman Elementary School group made me realize something...I have some "free" time. What's that?
This past week has been rough, and continues to be a challenging time. But, frankly, we've been challenged a great deal lately, so that helps us with perspective. My wife, my love, my Deb is beginning to show long since seen signs of her past, pre-cancerous self. By that, what I mean, is just being able to laugh or relax a bit; if only a little.
Here's the deal; today being Thursday, for the past 12 weeks, every Thursday, Deb's gotten infused with the Taxol that makes her feel so crummy. Each week, and less so as the weeks progressed, she would almost regain her "self", just in time to go and get resaturated. That today is Thursday and she didn't get an infusion allows us- allows her -to begin to seriously recuperate. Her progress can be measured in wit, which I'm so glad to see returning. It's been really hard for Deb, and for me to watch, to not be able to find the words a lot of the time lately. Make no mistake, the chemo treatments are IN-TENSE. People will say something like, "I can't even imagine what it's like" and all I can think is, first "don't" and second, "I can't even explain"...it's survival mode - you do what you need to because it's all you can do. But still, I find myself saying the same types of things to friends in similar situations - and YES, it's unfortunate that not only is our family going through this, but our good friends Sarah, Dan and Marek are having to realize the the raw and relentless therapy that is chemo.
That's not to say that today was without reality in the form of a doctor visit...Today, Deb got a CT scan to map out the locations for her forthcoming radiation therapy. While both of us understand the road goes on forever, we're so extremely grateful to be beyond the chemo portion of the program.
Ok, I think that might be just about enough rambling from these fingers tonight. Once again, I want to thank you all and let you know how much we appreciate your concern, support and love. That's what it's all about (but don't tell Ryan, she's convinced the hokey pokey is what it's all about).
and for the record...this may very well be the most rambling and tangential post to date...but, if you can decipher through my Thursday night, panic-watching messaging, you'll find there are some quality tidbits of news and substance.
Deb is up putting Ryan to sleep and I'm on the couch with laptop on lap goofing off with my latest obsession - facebook...what a distraction that site is. That I was just sitting here joining the Winkelman Elementary School group made me realize something...I have some "free" time. What's that?
This past week has been rough, and continues to be a challenging time. But, frankly, we've been challenged a great deal lately, so that helps us with perspective. My wife, my love, my Deb is beginning to show long since seen signs of her past, pre-cancerous self. By that, what I mean, is just being able to laugh or relax a bit; if only a little.
Here's the deal; today being Thursday, for the past 12 weeks, every Thursday, Deb's gotten infused with the Taxol that makes her feel so crummy. Each week, and less so as the weeks progressed, she would almost regain her "self", just in time to go and get resaturated. That today is Thursday and she didn't get an infusion allows us- allows her -to begin to seriously recuperate. Her progress can be measured in wit, which I'm so glad to see returning. It's been really hard for Deb, and for me to watch, to not be able to find the words a lot of the time lately. Make no mistake, the chemo treatments are IN-TENSE. People will say something like, "I can't even imagine what it's like" and all I can think is, first "don't" and second, "I can't even explain"...it's survival mode - you do what you need to because it's all you can do. But still, I find myself saying the same types of things to friends in similar situations - and YES, it's unfortunate that not only is our family going through this, but our good friends Sarah, Dan and Marek are having to realize the the raw and relentless therapy that is chemo.
That's not to say that today was without reality in the form of a doctor visit...Today, Deb got a CT scan to map out the locations for her forthcoming radiation therapy. While both of us understand the road goes on forever, we're so extremely grateful to be beyond the chemo portion of the program.
Ok, I think that might be just about enough rambling from these fingers tonight. Once again, I want to thank you all and let you know how much we appreciate your concern, support and love. That's what it's all about (but don't tell Ryan, she's convinced the hokey pokey is what it's all about).
and for the record...this may very well be the most rambling and tangential post to date...but, if you can decipher through my Thursday night, panic-watching messaging, you'll find there are some quality tidbits of news and substance.
Thursday, March 5, 2009
Seven Months and Four Days Later
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.
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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