Well hello! Good grief, you would not believe the rashes I am dealing with. I got steroids yesterday and I am doing better now. My doctor said to stay out of the sun. I promise you that I have stayed out of it. But what I think happened was about 3 days before treatment, I was in the sun and got a little red in some areas. Instead of my body healing a sunburn like normal, I think the chemo attacked any inflammation in my skin and made it worse like a 3rd degree burn/poison ivy. I hope this doesn't happen again, because I want to stay on this regimen. If I have rashes like this, there is no way I can sustain it. So hoping these go away quickly especially before the next treatment. Steroids, Benedryl, cream, cooling packs are helping!
I went into the office today for a bit. It's good to see my peeps. But, I have to take one day at a time here. For example, next Tuesday, I am supposed to go to a meeting but it's also calculated to be the day I should start losing the majority of my hair. So, while I want normalcy, the fact is that chemo side effects complicates things. I am a very social person without much of a filter and this makes it easier in some ways because I am open to talk about it all. But it also makes it more difficult in some ways because I might look different coupled with everyone's concern for me can be a bit overwhelming for me and them. So I am going to have to just figure this out day by day.
Emotionally, I am doing well. I had a hard day last Thursday that was draining. But I have been doing well with just little bursts of tears from time to time. The song "Thinking Out Loud" by Ed Sheeran makes me sad yet happy. It references 70 years old and damnit I want to live til I am 70. So as you can see, emotionally I am probably realistically a wreck. LOL. But I tell you I am doing well overall. Haha! This is cracking me up to write this. Usually I would rewrite this whole paragraph but I won't. I will give you the satisfaction of how crazy I sound and Chris says welcome to his world!!! LOL!
Sorry that I am not posting pics. I usually post from my phone and I haven't figured it out just yet. It wants to connect to google cloud pics yada yada yada.
Thank you for your love, prayers, support in all of this mess. :) Love you in this with me.
Tuesday, June 14, 2016
Sunday, June 12, 2016
My new normal
Hi,
I had a fun weekend in Chicago this weekend with neighbors and seeing Ryan play in his band, Stache. It's always best times to see the band, Ryan and Kelli and friends! I suited up in a hat, cover up, took a chair, drank plenty of water. Enjoyed it tremendously! It was a good refresher and time away. Today we are traveling back and my body is not doing as well. I thought I had escaped the side effects from my first treatment but that certainly has not been the case. I am not dealing with nausea which is good. I am dealing with soreness, fatigue, rashes, mouth issues. I figure it will get better in next couple of weeks just in time for the next tx on June 27. Still holding out hope that I don't lose all my hair. Today is certainly not one of my better days but I believe tomorrow will be. :)
I don't want to bore you with details over next couple of weeks so I may not post a ton. If something changes, I will post. I will be checking in to let you know how I am doing.
Xoxo. Amanda
I had a fun weekend in Chicago this weekend with neighbors and seeing Ryan play in his band, Stache. It's always best times to see the band, Ryan and Kelli and friends! I suited up in a hat, cover up, took a chair, drank plenty of water. Enjoyed it tremendously! It was a good refresher and time away. Today we are traveling back and my body is not doing as well. I thought I had escaped the side effects from my first treatment but that certainly has not been the case. I am not dealing with nausea which is good. I am dealing with soreness, fatigue, rashes, mouth issues. I figure it will get better in next couple of weeks just in time for the next tx on June 27. Still holding out hope that I don't lose all my hair. Today is certainly not one of my better days but I believe tomorrow will be. :)
I don't want to bore you with details over next couple of weeks so I may not post a ton. If something changes, I will post. I will be checking in to let you know how I am doing.
Xoxo. Amanda
Thursday, June 9, 2016
Phillipians 4: 6-7
Phillipians 4: 6-7
"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."
"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."
Wednesday, June 8, 2016
My Resolution
Well, last night I felt actually pretty good. Ate dinner well. Went to sleep at around 11:30pm. Didn't sleep soundly but slept pretty good to 5:30am. Woke up feeling really great. So I decided to hang out with Jack today. However, at one point Jack looked at me and said "Mom your face and neck are very red". It was just before that I started to feel like a weight was coming down on me. I thought I am doing too much. I am on the couch now. I am at about 80% now. Not bad.
I did find out that the HER2 positive result was a good result because it offers more therapeutic options in the long term with Perjeta and Herceptin. So that is good.
I have been processing all of this. Spending a lot of time thinking about what this all means because it is so easy to go down the "what if" road. It's self indulgent to think about it and it's inappropriate (for now)...
So, most often, these are my thoughts...I resolve to LIVE my life. I am getting well with this medicine. I am to feel good knowing that I am on the mend. I am to take advantage of feeling well and good times. I am to not waste time on sweating the small stuff or worrying about petty things or the "what if's".
I truly believe my breathing is already better which means it is truly working! Hot dog! Lol! We will take this day by day, week by week, month to month, year to year.
I continue to feel God's presence and guidance. I thank you for your love and prayers!
I did find out that the HER2 positive result was a good result because it offers more therapeutic options in the long term with Perjeta and Herceptin. So that is good.
I have been processing all of this. Spending a lot of time thinking about what this all means because it is so easy to go down the "what if" road. It's self indulgent to think about it and it's inappropriate (for now)...
So, most often, these are my thoughts...I resolve to LIVE my life. I am getting well with this medicine. I am to feel good knowing that I am on the mend. I am to take advantage of feeling well and good times. I am to not waste time on sweating the small stuff or worrying about petty things or the "what if's".
I truly believe my breathing is already better which means it is truly working! Hot dog! Lol! We will take this day by day, week by week, month to month, year to year.
I continue to feel God's presence and guidance. I thank you for your love and prayers!
Tuesday, June 7, 2016
First Treatment Done.
It's 6:38pm on Tuesday 6/7/16. The long dreaded first chemo treatment is over. It was definitely not as bad as I made it out to be in my mind.
Got there at 8:30am. Left at about 2:45pm. Had a room with a bed. Next time should be a little shorter. Got the needle in arm.. Perjeta first, then Herceptin, then premeds, then Taxotere.
Four years ago, there were two powerful drugs prior to getting Taxotere so I probably had a lot of residual effects from those. Now as far as chemo goes, the Taxotere is essentially by itself. The other two drugs (Perjeta and Herceptin) are given intravenously but are in a different family of treatment- technically not chemo. We are going to do this cocktail every 3 weeks for 3 rounds before we assess how it is working. This is all a process, not necessarily 1 or 6 and done.
Got there at 8:30am. Left at about 2:45pm. Had a room with a bed. Next time should be a little shorter. Got the needle in arm.. Perjeta first, then Herceptin, then premeds, then Taxotere.
Four years ago, there were two powerful drugs prior to getting Taxotere so I probably had a lot of residual effects from those. Now as far as chemo goes, the Taxotere is essentially by itself. The other two drugs (Perjeta and Herceptin) are given intravenously but are in a different family of treatment- technically not chemo. We are going to do this cocktail every 3 weeks for 3 rounds before we assess how it is working. This is all a process, not necessarily 1 or 6 and done.
This is Stage 4 cancer. We are attempting to prevent growth of these cells and starve them to kill them. I believe this treatment plan will do that. From how I understand this process, once the current cancer is killed and I have the all clear, we will drop the Taxotere and I will continue on Perjeta and Herceptin (one or both) forever, every 3 weeks. With this, we will attempt to further starve any cells and prevent growth. It's sort of like what we have attempted to do with the Tamoxifen pill to block estrogen to the cancer for past 4 years.
...more tomorrow on how I am feeling and doing.
God is with us. Thank you for your love and prayers.
...more tomorrow on how I am feeling and doing.
God is with us. Thank you for your love and prayers.
Monday, June 6, 2016
Round 2, Day 1- Amanda's Army of Angels Vs Cancer
OK, here we go...Day 1 (technically Day 7, I got the news on Tues 5/31) (absolutely surreal that I am writing this to you)
Quick story on how I got here...
In March 2016 (4 years and 4 mos after 1st diagnosis), I was coughing and then started experiencing shortness of breath and some wheezing. I was up to running 6 miles a day and just like that, I couldn't do it anymore. I saw a Nurse Practitioner who gave me steroids, antibiotics, inhaler and none of it worked. End of April, I called my oncologist, Dr. Rachel Harper with Lexington Clinic in Lexington, KY and she ordered a chest X-ray, Pulmonary function test- they were normal. She ordered a CT scan to see if there was a clot from the Tamoxifen. That's where she found enlarged lymph nodes that were causing the problem. I got a PET scan a few days later to see if there was uptake anywhere else in my body from top to bottom. The clusters of lymph nodes around my chest and lungs were the only "hot spots". So, I got a biopsy shortly where the pathology showed that my cancer was, in fact, back in these areas.
Doctor says its "very treatable". This is good. In the morning 6/7/16, I am starting a chemotherapy cocktail that will be intravenously injected Perjeta, Herceptin, and Taxotere. I had the Taxotere in my last treatment. I will lose my hair and have other stupid side effects, like nausea, losing fingernails eventually, etc. I currently do not know how long we will be at this. Right now, I will get this treatment every 3 weeks.
Family are doing well (I think). We are all feeling a range of emotions at any given time. I am overwhelmed, sad, happy, frustrated as heck, anxious, freaked out, impatient, encouraged...and more all at the same time, all the time. I am sure Chris and Jack are especially feeling this same way. We are doing a good job at keeping fear at bay and living our normal life. As I have mentioned to some, our mode of operation is "normal". I say that now, but I reserve the right to change that slightly after tomorrow's treatment.
Your love and prayers are appreciated. It is surreal that we are on this journey again. If I haven't talked to you much, its because I can get very emotional. I would tell you not to worry, but like Jack told me, "You are my mom, I am going to worry." I think I am close to many of you out there who are going to worry. I love you for it, but be encouraged.
Quick story on how I got here...
In March 2016 (4 years and 4 mos after 1st diagnosis), I was coughing and then started experiencing shortness of breath and some wheezing. I was up to running 6 miles a day and just like that, I couldn't do it anymore. I saw a Nurse Practitioner who gave me steroids, antibiotics, inhaler and none of it worked. End of April, I called my oncologist, Dr. Rachel Harper with Lexington Clinic in Lexington, KY and she ordered a chest X-ray, Pulmonary function test- they were normal. She ordered a CT scan to see if there was a clot from the Tamoxifen. That's where she found enlarged lymph nodes that were causing the problem. I got a PET scan a few days later to see if there was uptake anywhere else in my body from top to bottom. The clusters of lymph nodes around my chest and lungs were the only "hot spots". So, I got a biopsy shortly where the pathology showed that my cancer was, in fact, back in these areas.
Doctor says its "very treatable". This is good. In the morning 6/7/16, I am starting a chemotherapy cocktail that will be intravenously injected Perjeta, Herceptin, and Taxotere. I had the Taxotere in my last treatment. I will lose my hair and have other stupid side effects, like nausea, losing fingernails eventually, etc. I currently do not know how long we will be at this. Right now, I will get this treatment every 3 weeks.
Family are doing well (I think). We are all feeling a range of emotions at any given time. I am overwhelmed, sad, happy, frustrated as heck, anxious, freaked out, impatient, encouraged...and more all at the same time, all the time. I am sure Chris and Jack are especially feeling this same way. We are doing a good job at keeping fear at bay and living our normal life. As I have mentioned to some, our mode of operation is "normal". I say that now, but I reserve the right to change that slightly after tomorrow's treatment.
Your love and prayers are appreciated. It is surreal that we are on this journey again. If I haven't talked to you much, its because I can get very emotional. I would tell you not to worry, but like Jack told me, "You are my mom, I am going to worry." I think I am close to many of you out there who are going to worry. I love you for it, but be encouraged.
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