Thursday, September 26 - I know I haven't been updating this blog very good. There really isn't a lot to report. I'm still trying to recover from the infections and the Taxol I received on Sept. 4. I have had a few days where I was feeling pretty good for a few hours, but for the most part, nothing has changed.
Dane did take me to Washington for my CT scan and mold to get ready for radiation. I was marked with pen size tatoos to line up the beams. I will go in Oct 1st after mold is made and all the mapping is done to figure out where the radiation beams should be in accordance with my anatomy. I will have the chest area where the mastectomy was performed and also the armpit where the lymph nodes were removed. I will have 34 sessions every day except weekends. My last day should be Nov. 15 if all goes accordingly.
Although radiation does have several side effects the most common are the fatigue (cumulative) and possible burning of areas being treated. I will be given lotions to help me out with this.
Since I'm still not driving due to my numb feet and weak legs, I will be calling on a few of you to help me get there if I don't see any improvement in my legs in the near future. Dane will be taking time off the week I start for sure so that one is covered.
Again I ask for prayers of strength and patience while I finish up this last leg of treatment. Trying to stay strong!
Update on Past Week
Wednesday, September 18 - Here I am at 4:00 a.m. not able to sleep again. I thought it would be a good time to update the blog on what has been going on the past week. I am excited that I do not have to go to chemo today as originally scheduled. In fact, I'm still trying to get over the last one two weeks ago. I was told that most people (about 95%) breeze through Taxol treatments, but unfortunately I was in the 5% that didn't do so great.
When Dane and I went in last Tuesday, September 10 I was super excited to hear this news as previously reported. The fluids I received seemed to help some. I was right back to feeling awful again on Wednesday though. On Thursday I called and my mom took me in to get more fluids in Washington. They did not seem to make a difference this go around.
I was told previously to see my primary if the UTI did not improve. It seemed to be getting better so I decided to wait until this week because I really didn't want to pick up any infections in the doctors office if I didn't have to. I continued to feel poorly through the weekend. Between the indescrible fatigue, numbness in fingers and feet, my restless legs and nausea not to mention not being able to sleep at night it was a long weekend.
On Monday, the UTI came back suddenly. I called the primary and got an appointment. Of course the initial sample showed UTI so they are sending off for a culture again. I keep thinking I should be feeling better, but it hasn't happened yet. Doctor put me on a 7 day course of Keflex this time. I'm hoping the thrush does not return and this uncomfortable UTI goes away for good.
I did call and set up my simulation for radiation. That appointment is this Friday, September 20. I should find out at that time what my schedule will be. I'm hoping to get a short trip to Joplin in next weekend as I haven't seen the kids in a while and think that would be a big boost.
Everyone keeps telling me the hard part is over, so let the next step begin.
When Dane and I went in last Tuesday, September 10 I was super excited to hear this news as previously reported. The fluids I received seemed to help some. I was right back to feeling awful again on Wednesday though. On Thursday I called and my mom took me in to get more fluids in Washington. They did not seem to make a difference this go around.
I was told previously to see my primary if the UTI did not improve. It seemed to be getting better so I decided to wait until this week because I really didn't want to pick up any infections in the doctors office if I didn't have to. I continued to feel poorly through the weekend. Between the indescrible fatigue, numbness in fingers and feet, my restless legs and nausea not to mention not being able to sleep at night it was a long weekend.
On Monday, the UTI came back suddenly. I called the primary and got an appointment. Of course the initial sample showed UTI so they are sending off for a culture again. I keep thinking I should be feeling better, but it hasn't happened yet. Doctor put me on a 7 day course of Keflex this time. I'm hoping the thrush does not return and this uncomfortable UTI goes away for good.
I did call and set up my simulation for radiation. That appointment is this Friday, September 20. I should find out at that time what my schedule will be. I'm hoping to get a short trip to Joplin in next weekend as I haven't seen the kids in a while and think that would be a big boost.
Everyone keeps telling me the hard part is over, so let the next step begin.
Ringing of the Bell
Tuesday, September 10 - This past week has been especially brutal for me as far as chemo goes. The bone, muscle & joint pain as well as numbness in hands and feet have taken their toll on me. Also contracted a UTI infection which led to two rounds of antibiotics that gave me thrush. I have also been nauseated and extremely fatigued.
I stayed and received fluids to flush my system and re-hydrate. They told me if I continued to feel this poorly I could get fluids at any time.
My next step is to call the Radiation Oncologist and get my simulation set up. They will make a mold for me and tattoo pin size marks to show where the radiation will hit. More on that as I learn more.
I am super exhausted but yet super stoked at this news. Continued prayers and good thoughts would be still be appreciated.
I called my doctor yesterday after the 2nd shot was administered in Washington and they asked me to come in for bloodwork and to get the third shot if needed. My oncologist would come to the chemo room and talk to me about pain management and to check on my thrush.
So Dane took me in this afternoon. My white blood counts were up so I did not need the shot. The doctor came and I asked her since I had had 3 weekly Taxol treatments and 3 biweekly ones if I could reduce next weeks chemo amount. She looked up the numbers and did some math. She told me NO MORE CHEMO! Yes I said NO MORE CHEMO! Since I have a more aggressive cancer she had scheduled me for a little more, but that I have received what was recommended in the guidelines. Since I was not tolerating it very well - we are stopping. God is good! I got to ring the bell meaning Chemo is done!!!!!
I stayed and received fluids to flush my system and re-hydrate. They told me if I continued to feel this poorly I could get fluids at any time.
My next step is to call the Radiation Oncologist and get my simulation set up. They will make a mold for me and tattoo pin size marks to show where the radiation will hit. More on that as I learn more.
I am super exhausted but yet super stoked at this news. Continued prayers and good thoughts would be still be appreciated.
Only One More Chemo to Go!
Thursday, September 5 - What another rough two weeks I had. I kind of feel like a broken record. More of the same with the bone, muscle and joint pain. No energy - when I did, I walked some, but couldn't ever go more than 1/2 mile due to weakness and numbness in legs. The good news is that I wasn't so depressed (at least I didn't think so).
I did go to Schaumburg, IL with Dane last week since he was driving there to deliver an overview on Interference Hunting. I figured I would keep him company on the drive and just hang out at the hotel the day he had to work. Thanks mom and dad for keeping Willow again. We left on Tuesday and I was feeling pretty good until that evening. I slept most of the next day and we returned home on Thursday. It was just good to get out and a change of scenery.
On Tuesday, September 3 I called the chemo nurses as I thought I was getting a UTI infection over the weekend. I had to go to Washington lab and give a urine sample. They put me on 3 days of Cipro antibiotic.
On Wednesday, September 4, Dane & I headed in for #3 of 4 Taxol infusions. I had an appointment with the Medical Oncologist, Dr. Coplin first. I had decided to ask if I could bypass the Neulasta Injection and what the consequences would be.
She said I could skip it, but since I had these injections after the chemo infusions of Adriamycin/Cytoxin before surgery and they did not affect me at all she thought it was more likely the Taxol. If I skipped I would go every 3 weeks instead of two like they used to do before the Neulasta shots were available. Consequences on that protocol used to be low wbc with chance of infection and fevers which could end up being in the hospital to run high dose antibiotics.
She suggested that due to my history with low white blood counts on the weekly Taxol - that I have an injection of Neupogen which is like Neulasta only faster acting to stimulate the bone marrow for the white blood cells to grow. I would get an injection on Friday, Monday and then Tuesday (if my wbc were not up). This would be less of the medicine than getting a whole Neulasta Injection which is slow release over 10 days. So our thoughts are that it might not be as bad IF its the injections causing it. If it's the Taxol, then I'm just going to have to put up with it.
A few other questions I had asked were about port removal after chemo. She said that she usually leaves it up to the patient. Some want them out right away and others leave them in for 6 months or so if they aren't bothering them and then get blood drawn and flushed at 3 month visits. I'll probably get it out before the end of the year so its on this years insurance coverage.
I asked about follow up visits after chemo. Dr. Coplin said I would be seeing her for the next 10 years for blood work and exams. We start at every 3 months for a while, then every 6 months - then go to yearly. I also asked about any scans due to spread of cancer or recurrence. She said not unless something shows up in exams or bloodwork. She said since I was high risk due to being Triple Negative that it could be done. So that will remain to be seen.
I cannot get a flu shot until after chemo is over and my white blood counts are back up.
So on to the chemo room, same drill - access port, bloodwork - good to go - premeds, then Taxol. Four hours later we were on our way home. We decided not to go to dinner for our anniversary until I got my taste buds back.
So one more chemo and then on to radiation. I am seeing an end in sight.
Joshua 1:9 Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest
I did go to Schaumburg, IL with Dane last week since he was driving there to deliver an overview on Interference Hunting. I figured I would keep him company on the drive and just hang out at the hotel the day he had to work. Thanks mom and dad for keeping Willow again. We left on Tuesday and I was feeling pretty good until that evening. I slept most of the next day and we returned home on Thursday. It was just good to get out and a change of scenery.
On Tuesday, September 3 I called the chemo nurses as I thought I was getting a UTI infection over the weekend. I had to go to Washington lab and give a urine sample. They put me on 3 days of Cipro antibiotic.
On Wednesday, September 4, Dane & I headed in for #3 of 4 Taxol infusions. I had an appointment with the Medical Oncologist, Dr. Coplin first. I had decided to ask if I could bypass the Neulasta Injection and what the consequences would be.
She said I could skip it, but since I had these injections after the chemo infusions of Adriamycin/Cytoxin before surgery and they did not affect me at all she thought it was more likely the Taxol. If I skipped I would go every 3 weeks instead of two like they used to do before the Neulasta shots were available. Consequences on that protocol used to be low wbc with chance of infection and fevers which could end up being in the hospital to run high dose antibiotics.
She suggested that due to my history with low white blood counts on the weekly Taxol - that I have an injection of Neupogen which is like Neulasta only faster acting to stimulate the bone marrow for the white blood cells to grow. I would get an injection on Friday, Monday and then Tuesday (if my wbc were not up). This would be less of the medicine than getting a whole Neulasta Injection which is slow release over 10 days. So our thoughts are that it might not be as bad IF its the injections causing it. If it's the Taxol, then I'm just going to have to put up with it.
A few other questions I had asked were about port removal after chemo. She said that she usually leaves it up to the patient. Some want them out right away and others leave them in for 6 months or so if they aren't bothering them and then get blood drawn and flushed at 3 month visits. I'll probably get it out before the end of the year so its on this years insurance coverage.
I asked about follow up visits after chemo. Dr. Coplin said I would be seeing her for the next 10 years for blood work and exams. We start at every 3 months for a while, then every 6 months - then go to yearly. I also asked about any scans due to spread of cancer or recurrence. She said not unless something shows up in exams or bloodwork. She said since I was high risk due to being Triple Negative that it could be done. So that will remain to be seen.
I cannot get a flu shot until after chemo is over and my white blood counts are back up.
So on to the chemo room, same drill - access port, bloodwork - good to go - premeds, then Taxol. Four hours later we were on our way home. We decided not to go to dinner for our anniversary until I got my taste buds back.
So one more chemo and then on to radiation. I am seeing an end in sight.
Joshua 1:9 Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest
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