This past week, I completed round 6 out of 12 Taxol infusions! That is definitely cause for some joy!
I had figured that after 4 rounds I knew what the side effects were, and really, they were pretty minimal compared to the original drugs. But after week 5, I started having some side effects that I hadn't experienced before...extreme fatigue, feeling like I was catching the flu. From last Saturday through Tuesday, I was definitely not myself.
Going into the clinic on Wednesday, I was able to ask the nurse (thank God for nurses!!) what might be happening with me. As soon as I started describing my bones hurting, she nodded and told me that Neulasta was one of the meds I get each week. She described some effects of it, and it was exactly what I was experiencing.
What is Neulasta, you ask? I'm so glad you asked. I looked it up on my iPad while hooked up!
Neulasta helps stimulate white blood cells, which help to fight off infections. White blood cells are connected to bone marrow, so the deep bone pain I felt was real and caused by the extra production.
Other side effects I've had make you feel like you're getting the flu, chills, cough, fever, etc.
While the effects aren't fun, it is a relief to know that the pains are associated with SOMETHING and not NOTHING. Having the information is better than not knowing. Activity and rest interspersed, and Tylenol/Ibuprofen spread out are the best bets for dealing with the effects.
So I had a pretty good rest of the week, and started getting very tired last night. This morning I'm up AND in my comfy chair, and will try to keep ahead of the worst of the pain. I'm lucky I can 'chill out' on Saturday and Sunday, and ;that my family is supportive and helpful.
During treatments, I find that I love listening to my music to zone out. This past Wednesday, I enjoyed my Pink jams. I don't know if I should be embarrassed by admitting I love Pink's music (when I told Ben I liked Nickelback, he told me something like I should never admit that to anyone), but I really do. As a piece of advice if you don't know her and want to check her out, there are explicit versions and cleaned-up versions (she sings a lot of party and emotional songs).
A couple songs this past week made an impact on me while listening for whatever reason, and I thought I'd share them:
The Great Escape
Beam Me Up
This weekend, my mom, sister and brother-in-law are in Indiana for a family wedding with the cousins. If you're a basketball fan, then you'll know how excited my sister was to find she only comes up to Cody Zeller's waist, and that my mom was thrilled to have her picture taken with Victor Oladipo (and get his autograph). Congratulations to Jordan and Aubrey!
Caden is coming over in a bit, and Bill and Ben are taking him to McWane Science Center to hang out. If I feel up to it, I'll meet them for lunch later.
We're looking forward to our July 4th family gathering in Dalton at dad's house. Ben may be getting the fireworks this weekend for that event!
Thanks for your continued love and support! I love you all!
Denise
Saturday, June 27, 2015
Thursday, June 11, 2015
Check In!
Hi everybody! I am so happy to say that I've just finished my 4th weekly Taxol infusion yesterday! Woohoo! 8 more to go!
Side effects:
1. Fatigue/energy level issues but not near as bad as before
2. Still some brain fog, but from what I understand that will continue for quite a while. I mostly 'feel' it when I'm trying to come up with something quickly!
3. Somehow these treatments act like a diuretic on the evenings of the infusion...THANK GOODNESS that doesn't last past the evening, but it's a definite issue! (think of a pregnant lady - Zoe! - and those feelings! Nuff said).
By the way, the folks at the Acton Road Kirklin Clinic don't have a problem with someone sitting with me during the treatment. So, if you've ever wanted to see what it's like to be in an infusion center, let me know and you could come visit! Depending on what's happening or any emergencies, I'm usually in there for about 3 hours. Ben has come in the last couple of weeks to bring me a sandwich and sit with me for 30 minutes or so. That's a pretty good model. I get a liquid dose of Benadryl in the IV after the premeds, so that knocks me out in the last hour or so. SO, if you're interested, let me know and we'll talk about timing!
Timing was really good for me to get started back to work this past Monday. Everyone at church has been SO LOVELY and compassionate. It's been great to be around people, and I know for sure that I really love the 'business' of service.
Bill has recovered well from his gallbladder surgery. He's had his follow up appointment, and all looks good. The symphony completed their 2014-2015 season this past weekend. That means he's able to concentrate on his personnel management solely, although he continues to practice to keep his skills up. It's nice to have him around a bit more, especially in the evenings!
This week, Ben is working with the Berry Middle School drum line band students at Spain Park High School. He's very happy that he's seen progress this week. Rachel continues to work hard, and Caden is going to the Jewish Community Center summer program.
Bill and I had two weekends 'away' with the first being the Lake Guntersville cabin with Caden. Bill and Caden fished, and Caden loved playing on the beach. Then, Bill and I went to Montgomery for the Memorial Day weekend. We visited the Archives and History museum....if you're interested in that kind of stuff, there's a brand new museum that takes up the entire 2nd floor, with a long history of Alabama from way past to present. It's really well done.
We also went to Old Cahawba Town which is just south of Selma. In the early 1800's it was the first state capitol,, located at the crux of the Alabama and Cahaba rivers. It basically became a ghost town after the civil war, and there are remnants of the old town including two cemeteries. It's an open park now with some reconstruction/renovations. It was a great trip although it started raining on us and I ended up putting the car in a ditch which required AAA to pull us out (but that's a long story and you don't really need to hear the details - ha!!).
After starting to starve, we drove back into Selma and realized that basically all of the sit down and be served restaurants are closed on Sundays! News flash, Selma....people visit places on the weekend and like to eat at places NOT fast food!
At any rate, we then started at the Edmund Pettis Bridge and drove back to Montgomery while stopping at historical signs where the marchers stopped. Unfortunately, (listen up Selma), even on a Sunday the Interpretive Centers were closed, but we still stopped and looked in the windows. It was a great day. Trail Website
Other updates:
We met with surgeon Dr. Urist at Kirklin. We have realized that he was my surgeon 20 years ago for my mastectomy. He worked with Dr. Grotting who was my plastic surgeon. There are absolutely no decisions made, only things for us to consider:
1. There appears to be no true medical necessity for me to have another mastectomy. He said that in situations similar to mine, research shows no better outcome with or without surgery, but that women's personal preferences tend to dictate their end choices.
2. If I opt for a mastectomy during my treatment plan, I would need to have it scheduled after chemo but before radiation. I would then need to wait 4-6 weeks before radiation starts. I asked about having the surgery after radiation, and I would need to wait somewhere like a year for the skin, etc, to heal.
3. Plastic surgery options vary. Because Dr. Grotting continues to do surgeries at Highlands Hospital (still a part of UAB system), and Dr. Urist would work with him again, it was suggested that I call Dr. Grotting for a discussion of options.
I know there are many thoughts out there (and in my head) that says, sure just take it off and then you don't have to worry. However, Dr. Urist said that any concerns about future cancer is that with or without surgery, cancer possibly could grow in other locations (that is not specific about me, but a generalization). So, diligence in future check-ups is necessary no matter what. Depending on what my plastic surgery options might be, I know there is a lot of recovery and possibly a two or three step process that increases the recovery time. So lots to think about. There is also nothing to prevent me from waiting and having surgery in the next year or so. It's actually a good thing not to feel rushed in making this decision and allowing myself to understand or feel any anxiety levels I may or may not have following treatment.
There have been so many recent medical traumas and issues with people in my realm of friendships, that we feel incredibly lucky, blessed, and loved. Our thoughts and prayers and love go to those people who are dealing with new or recurring crap; our empathy levels are very high.
Love you all! We continue to be grateful on all accounts. Phone calls, texts, lunches, FB messages, dinners brought, cards, prayers..it's all been amazing and we feel the love.
Denise
Side effects:
1. Fatigue/energy level issues but not near as bad as before
2. Still some brain fog, but from what I understand that will continue for quite a while. I mostly 'feel' it when I'm trying to come up with something quickly!
3. Somehow these treatments act like a diuretic on the evenings of the infusion...THANK GOODNESS that doesn't last past the evening, but it's a definite issue! (think of a pregnant lady - Zoe! - and those feelings! Nuff said).
By the way, the folks at the Acton Road Kirklin Clinic don't have a problem with someone sitting with me during the treatment. So, if you've ever wanted to see what it's like to be in an infusion center, let me know and you could come visit! Depending on what's happening or any emergencies, I'm usually in there for about 3 hours. Ben has come in the last couple of weeks to bring me a sandwich and sit with me for 30 minutes or so. That's a pretty good model. I get a liquid dose of Benadryl in the IV after the premeds, so that knocks me out in the last hour or so. SO, if you're interested, let me know and we'll talk about timing!
Timing was really good for me to get started back to work this past Monday. Everyone at church has been SO LOVELY and compassionate. It's been great to be around people, and I know for sure that I really love the 'business' of service.
Bill has recovered well from his gallbladder surgery. He's had his follow up appointment, and all looks good. The symphony completed their 2014-2015 season this past weekend. That means he's able to concentrate on his personnel management solely, although he continues to practice to keep his skills up. It's nice to have him around a bit more, especially in the evenings!
This week, Ben is working with the Berry Middle School drum line band students at Spain Park High School. He's very happy that he's seen progress this week. Rachel continues to work hard, and Caden is going to the Jewish Community Center summer program.
Bill and I had two weekends 'away' with the first being the Lake Guntersville cabin with Caden. Bill and Caden fished, and Caden loved playing on the beach. Then, Bill and I went to Montgomery for the Memorial Day weekend. We visited the Archives and History museum....if you're interested in that kind of stuff, there's a brand new museum that takes up the entire 2nd floor, with a long history of Alabama from way past to present. It's really well done.
We also went to Old Cahawba Town which is just south of Selma. In the early 1800's it was the first state capitol,, located at the crux of the Alabama and Cahaba rivers. It basically became a ghost town after the civil war, and there are remnants of the old town including two cemeteries. It's an open park now with some reconstruction/renovations. It was a great trip although it started raining on us and I ended up putting the car in a ditch which required AAA to pull us out (but that's a long story and you don't really need to hear the details - ha!!).
After starting to starve, we drove back into Selma and realized that basically all of the sit down and be served restaurants are closed on Sundays! News flash, Selma....people visit places on the weekend and like to eat at places NOT fast food!
At any rate, we then started at the Edmund Pettis Bridge and drove back to Montgomery while stopping at historical signs where the marchers stopped. Unfortunately, (listen up Selma), even on a Sunday the Interpretive Centers were closed, but we still stopped and looked in the windows. It was a great day. Trail Website
Other updates:
We met with surgeon Dr. Urist at Kirklin. We have realized that he was my surgeon 20 years ago for my mastectomy. He worked with Dr. Grotting who was my plastic surgeon. There are absolutely no decisions made, only things for us to consider:
1. There appears to be no true medical necessity for me to have another mastectomy. He said that in situations similar to mine, research shows no better outcome with or without surgery, but that women's personal preferences tend to dictate their end choices.
2. If I opt for a mastectomy during my treatment plan, I would need to have it scheduled after chemo but before radiation. I would then need to wait 4-6 weeks before radiation starts. I asked about having the surgery after radiation, and I would need to wait somewhere like a year for the skin, etc, to heal.
3. Plastic surgery options vary. Because Dr. Grotting continues to do surgeries at Highlands Hospital (still a part of UAB system), and Dr. Urist would work with him again, it was suggested that I call Dr. Grotting for a discussion of options.
I know there are many thoughts out there (and in my head) that says, sure just take it off and then you don't have to worry. However, Dr. Urist said that any concerns about future cancer is that with or without surgery, cancer possibly could grow in other locations (that is not specific about me, but a generalization). So, diligence in future check-ups is necessary no matter what. Depending on what my plastic surgery options might be, I know there is a lot of recovery and possibly a two or three step process that increases the recovery time. So lots to think about. There is also nothing to prevent me from waiting and having surgery in the next year or so. It's actually a good thing not to feel rushed in making this decision and allowing myself to understand or feel any anxiety levels I may or may not have following treatment.
There have been so many recent medical traumas and issues with people in my realm of friendships, that we feel incredibly lucky, blessed, and loved. Our thoughts and prayers and love go to those people who are dealing with new or recurring crap; our empathy levels are very high.
Love you all! We continue to be grateful on all accounts. Phone calls, texts, lunches, FB messages, dinners brought, cards, prayers..it's all been amazing and we feel the love.
Denise
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