I am SO happy to be done with chemotherapy! Last week was the 12th Taxol infusion, and it's nice to not have to think about going in today for the afternoon!
In fact, today, Bill and I are going to follow Ben to JSU and help him set up his dorm room. Ben has band camp starting tonight. He's had a great summer, culminating in the past 2 weeks working with the drumlines at Spain Park High School and Vestavia High School (and the weeks before then at Ohatchee High School). He had great experiences, and enjoyed his time a LOT! He had really long days (7:00 AM to 9:00 PM every day), and NEVER complained. Good to know that he is in the right program at school!
Caden started 4th grade at Avondale Elementary last week, and is doing very well. Of course we are biased, but we truly think he's a remarkable 10 year old! Very wise for his age and aware/caring of others. Rachel is a great mom.
On Tuesday, Bill and I went to see Dr. Nabell for a discussion about next steps.
Current side effects - Dr. Nabell said that most of the side effects will dissipate between 3-6 months. She said my energy level will get better each week that I'm off chemo (thank goodness!). I currently have numbness in my fingers and toes and am starting B6 vitamins today, which she said might help get over that quicker. I have an appointment with a UAB podiatrist on Monday, because I smashed my big toe when we were in Kentucky. The chemo's effect on hair and quick growing cells also affects nail beds, so about half of my fingernails are brown and ridged (and basically dead but she said that the new growth will just push the dead part on out). So my toenails are the same, and when I smashed the toe, the nail has pulled up. I started my second antibiotic for it, but it's going to have to come off. She said the nail WOULD grow back, but it will take a year probably. I won't really know anymore til Monday. YUCK!!
After meeting with Dr. Grotting last week (plastic surgeon who worked with Dr. Urist on my first go-round), I learned that he is not doing that surgery any more, but his associate is. That helped me know that I would go ahead and use the Kirklin doctors rather than go with someone else outside Kirklin if it can't be Dr. Grotting. He said that he would not use saline, but would use tissue for a better match. However, he also agreed that if the surgery wasn't necessary, to really think it through, as it would add a 6 week recovery time.
So it was good to get that information, but it basically helped us confirm that surgery is not the direction I want to take at this time.
Concern about radiation is lymph-edema possibilities. Even with surgery, Dr. Nabell recommended radiation for the axcillary area in the soft tissue area under the armpit (lymph node area). Without surgery, she would add an area in the breast tissue. The chance of lymph-edema doesn't change with adding the second site. The other "risk" with radiation is skin toxicity, which they will visually check for each visit.
The radiation oncologist will be calling me to set up our first appointment time. Dr. Nabell said they would negotiate with me re: daily times so that I can have as regular a schedule as possible. She said they like to wait about 2 weeks before starting the radiation to let me have some recovery from the chemo. I'll be going to the Acton Road Kirklin Clinic for the treatments, as it's much more convenient and much closer than going to the Kirklin clinic downtown. After the first couple of appointments, I should be able to get in and out in about 30 minutes.
Regarding scans, etc., Dr. Nabell said she knew this sounded kind of harsh, but that their research from cancer patients around the country has shown that scans do often find cancer issues several weeks in advance of other symptoms coming up, but that the outcomes of having the scans vs. symptoms appearing are not differentiated. The risks from the additional radiation from the scans offset the benefits of finding the cancer a bit earlier. However, she did say that I could talk with them if I felt that I need a scan or had major concerns at some point. What I will be looking for is any symptom that doesn't fit (with me knowing that I have a cold, flu, etc.) and that doesn't go away in 2 weeks.
So right now, I have a podiatrist appointment scheduled, will schedule an appointment probably next week with the radiologist, and then have an appointment with Dr. Nabell in 2 months. I feel really good about the level and quality of care that I'm receiving, and Bill and I feel that we're on the right course of treatment.
Grateful for so much. As I wrote a while back, there are so many people in my circle who have experienced so much tragedy or heartache in the last few months. Life or quality of life is not certain. I wish I had some kind of wise word to give, but I'm just not there yet. I would say to hug your people every day and tell them you love them.
Love you all!
Denise
Wednesday, August 12, 2015
Saturday, June 27, 2015
Side Effects, Version 2.0
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
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
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
Thursday, May 14, 2015
Last of the red devil, gallbladders, Mother's Day and more...
So sorry it's been so long again since I've fully communicated about what's been happening!
Going back to the first of my last two visits with Dr. Nabell...my heart had been racing in my chest, even when I was just sitting down. She had prescribed the Verapamil which immediately helped. I had the echocardiogram, and then met with a cardiologist for an ekg and to go over both. Fortunately, my heart functions all look good. He said I have mild hypertension and that the meds should be continued. The doc is located at a UAB/Kirklin center located in Vestavia! I have driven past it several times and didn't really notice it was there.
At the LAST Dr. Nabell appointment, we discussed the visit with the cardiologist, and also discussed having my last 12 treatments at the Vestavia center. She agreed with that. That is for the weekly taxol treatments. Those are going to be scheduled for Wednesdays, and will last about 2 hours each. She said (and the nurse later also said) that many people are able to work the next day. I'm very grateful I will have will a couple of weeks of those treatments before I go back to work on June 8.
The news that has taken me the longest to digest is that she feels I need 6 weeks of daily radiation (Monday-Fridays) following the treatments, regardless of whether I have surgery or not. She said that because the margins were not differentiated (I may be saying that wrong), that the radiation will make sure that the area is covered. She is setting up an appointment with a surgeon at UAB for me to discuss surgical options, and that appointment should be in the next month or so. I am not sure whether or not the surgery would potentially come first and then radiation, or vice versa, so I will have additional questions to ask as I meet with the surgeon and Dr. Nabell. Interestingly, the Vestavia Kirklin center is the only place that the radiation is done, so at least it will be close by also. Those treatments will take under an hour each (about 30-40 minutes). I will check out that office/location when I go for the weekly treatments.
Right after the last blog post, I started having issues with my eyes...lots of watering and some itching. The nurse was very responsive and said that it was a side effect of chemo, but if the itching continued or got 'gritty' to call an ophthalmologist. By that Monday morning, my eyes were red and very gritty feeling, so I called a local UAB ophthalmology office here in Vestavia. They told me to come in by 10:15 (they specialize in glaucoma but are suited to meet any ophthalmology needs). I got in and was fully screened and checked. He told me I still have 20/20 vision (or so) long-distance and that my eyes were the best he had seen all morning! BUT the side-effects of chemo were definitely causing my eye issues (in addition to being a woman over the age of 40!). So now I'm putting in Systane Balance eye drops as often as I can during the day (recommended 8-10 times), and taking 2000 mg of fish oil each day. The eye drops have really helped but I find I do have to put them in every hour-hour and a half.
Then came my last infusion of the first set of cocktails. So grateful to have that over but I'm still dealing with the aftermath. Even thinking about the infusion makes me feel ill. Grateful to have Mary and MJ Aiken walk over from Children's to hang out with me for a bit. I finally asked the nurse why they wear gloves and gown while giving the 'red devil' chemo part, and she said that it's very toxic and that she has accidentally gotten some on her skin and has scars as a result. Okay, that's enough of that!
Rachel's Steven came by on Friday morning to take Bill to UAB for his gall bladder surgery, scheduled for 8:00 a.m. Surgery went well and pretty easily from what I've been told. The day took longer than expected because he experienced some nausea and then had to be given IV fluids to help him go to the bathroom! Steven was a trooper, as Bill didn't get home til around 4:00. Bill rested well, and managed the pain pretty well, even with soreness. In fact, yesterday (Wednesday), he went into work and worked most of the day! The 'scar' looks really good...right in the center of his belly button!
We didn't announce this when I learned about it, because we weren't sure how Saturday was going to go (3 days after my infusion and the day after Bill's surgery), but I was notified at the beginning of the week that I had won a contest through Silvertron Restaurant (in Avondale)! It was for a pick up and car ride in a classic vehicle and then ride back home. We went ahead and said YES because we were hopeful in getting out for a wonderful Mother's Day brunch! Ben was out of town, so couldn't join us, and Rachel was working in the morning but joined us at the restaurant. Cathy and Bob Corley were able to come to our house for the experience and brunch! Yes, we got up and by 11:00 the "Elizabeth," a 1956 white Rolls-Royce Silver Cloud pulled up in front of our house. Matt, our driver, couldn't have been more gracious. We piled in and drove to Silvertron. I resisted the urge to roll down the window and wave like the queen to the neighbors.
We had a wonderful brunch with Rachel and Caden, Bob and Cathy, and us. Marco (the owner) greeted us at the curb with a special parking space and we were seated by the front window. We shared a pitcher of strawberry-basil mimosas (DELICIOUS!) and amazing brunch meals. Caden was able to squeeze in the Rolls to ride back to the house with us. A fun time. We were ready to nap and relax when we got back but we were able to do that! So fun.
On Sunday (actual Mother's Day), I was surprised with a wonderful flower container of flowers that attract hummingbirds (from both kids and Bill). Ben brought me some cupcakes from his favorite baker in Jacksonville, and Molly Jo brought me some potted flowers as well. Ben made french toast breakfast. Lovely.
Yesterday, I felt better mentally and emotionally but was worn out as soon as I got up to do anything. Today is better with my energy, so I'm happy about that. Tonight is another part of my Mother's Day! Ben and MJ got her mother and me tickets to Vestavia Carmike to see Pitch Perfect 2 tonight (with them!). So excited! Opening night WooHoo! How did they know we would want to see this?!!
Also happy that Bill is feeling better and will be able to drive up to Lake Guntersville State Park (just over an hour away) for us to stay in one of their chalets (like a cabin with a view of the lake) for a couple of nights. We thought it would be nice to get away for a few days. Caden is going to come with us and is prepped to read, relax and play games or puzzles. We've always loved staying up there, and are looking forward to this.
Again, so grateful for the many checking in texts and emails, the many meals delivered for us, and other contacts. We feel your love and compassion, and appreciate it so much.
Until later!
Much love,
Denise
Going back to the first of my last two visits with Dr. Nabell...my heart had been racing in my chest, even when I was just sitting down. She had prescribed the Verapamil which immediately helped. I had the echocardiogram, and then met with a cardiologist for an ekg and to go over both. Fortunately, my heart functions all look good. He said I have mild hypertension and that the meds should be continued. The doc is located at a UAB/Kirklin center located in Vestavia! I have driven past it several times and didn't really notice it was there.
At the LAST Dr. Nabell appointment, we discussed the visit with the cardiologist, and also discussed having my last 12 treatments at the Vestavia center. She agreed with that. That is for the weekly taxol treatments. Those are going to be scheduled for Wednesdays, and will last about 2 hours each. She said (and the nurse later also said) that many people are able to work the next day. I'm very grateful I will have will a couple of weeks of those treatments before I go back to work on June 8.
The news that has taken me the longest to digest is that she feels I need 6 weeks of daily radiation (Monday-Fridays) following the treatments, regardless of whether I have surgery or not. She said that because the margins were not differentiated (I may be saying that wrong), that the radiation will make sure that the area is covered. She is setting up an appointment with a surgeon at UAB for me to discuss surgical options, and that appointment should be in the next month or so. I am not sure whether or not the surgery would potentially come first and then radiation, or vice versa, so I will have additional questions to ask as I meet with the surgeon and Dr. Nabell. Interestingly, the Vestavia Kirklin center is the only place that the radiation is done, so at least it will be close by also. Those treatments will take under an hour each (about 30-40 minutes). I will check out that office/location when I go for the weekly treatments.
Right after the last blog post, I started having issues with my eyes...lots of watering and some itching. The nurse was very responsive and said that it was a side effect of chemo, but if the itching continued or got 'gritty' to call an ophthalmologist. By that Monday morning, my eyes were red and very gritty feeling, so I called a local UAB ophthalmology office here in Vestavia. They told me to come in by 10:15 (they specialize in glaucoma but are suited to meet any ophthalmology needs). I got in and was fully screened and checked. He told me I still have 20/20 vision (or so) long-distance and that my eyes were the best he had seen all morning! BUT the side-effects of chemo were definitely causing my eye issues (in addition to being a woman over the age of 40!). So now I'm putting in Systane Balance eye drops as often as I can during the day (recommended 8-10 times), and taking 2000 mg of fish oil each day. The eye drops have really helped but I find I do have to put them in every hour-hour and a half.
Then came my last infusion of the first set of cocktails. So grateful to have that over but I'm still dealing with the aftermath. Even thinking about the infusion makes me feel ill. Grateful to have Mary and MJ Aiken walk over from Children's to hang out with me for a bit. I finally asked the nurse why they wear gloves and gown while giving the 'red devil' chemo part, and she said that it's very toxic and that she has accidentally gotten some on her skin and has scars as a result. Okay, that's enough of that!
Rachel's Steven came by on Friday morning to take Bill to UAB for his gall bladder surgery, scheduled for 8:00 a.m. Surgery went well and pretty easily from what I've been told. The day took longer than expected because he experienced some nausea and then had to be given IV fluids to help him go to the bathroom! Steven was a trooper, as Bill didn't get home til around 4:00. Bill rested well, and managed the pain pretty well, even with soreness. In fact, yesterday (Wednesday), he went into work and worked most of the day! The 'scar' looks really good...right in the center of his belly button!
We didn't announce this when I learned about it, because we weren't sure how Saturday was going to go (3 days after my infusion and the day after Bill's surgery), but I was notified at the beginning of the week that I had won a contest through Silvertron Restaurant (in Avondale)! It was for a pick up and car ride in a classic vehicle and then ride back home. We went ahead and said YES because we were hopeful in getting out for a wonderful Mother's Day brunch! Ben was out of town, so couldn't join us, and Rachel was working in the morning but joined us at the restaurant. Cathy and Bob Corley were able to come to our house for the experience and brunch! Yes, we got up and by 11:00 the "Elizabeth," a 1956 white Rolls-Royce Silver Cloud pulled up in front of our house. Matt, our driver, couldn't have been more gracious. We piled in and drove to Silvertron. I resisted the urge to roll down the window and wave like the queen to the neighbors.
We had a wonderful brunch with Rachel and Caden, Bob and Cathy, and us. Marco (the owner) greeted us at the curb with a special parking space and we were seated by the front window. We shared a pitcher of strawberry-basil mimosas (DELICIOUS!) and amazing brunch meals. Caden was able to squeeze in the Rolls to ride back to the house with us. A fun time. We were ready to nap and relax when we got back but we were able to do that! So fun.
On Sunday (actual Mother's Day), I was surprised with a wonderful flower container of flowers that attract hummingbirds (from both kids and Bill). Ben brought me some cupcakes from his favorite baker in Jacksonville, and Molly Jo brought me some potted flowers as well. Ben made french toast breakfast. Lovely.
Yesterday, I felt better mentally and emotionally but was worn out as soon as I got up to do anything. Today is better with my energy, so I'm happy about that. Tonight is another part of my Mother's Day! Ben and MJ got her mother and me tickets to Vestavia Carmike to see Pitch Perfect 2 tonight (with them!). So excited! Opening night WooHoo! How did they know we would want to see this?!!
Also happy that Bill is feeling better and will be able to drive up to Lake Guntersville State Park (just over an hour away) for us to stay in one of their chalets (like a cabin with a view of the lake) for a couple of nights. We thought it would be nice to get away for a few days. Caden is going to come with us and is prepped to read, relax and play games or puzzles. We've always loved staying up there, and are looking forward to this.
Again, so grateful for the many checking in texts and emails, the many meals delivered for us, and other contacts. We feel your love and compassion, and appreciate it so much.
Until later!
Much love,
Denise
Wednesday, April 29, 2015
how do 10 days go by?
so lots to update on...I just haven't felt up to writing but this morning is definitely better.
Last Tuesday, April 21, Rachel took me to an appointment with Dr. Nabell (who I usually don't see during infusions). I had realized that my heart had been pounding for the past week and a half or so...even when I was just sitting, I could feel my heart racing in my chest. Sure enough, my blood pressure was up, and the blood counts showed some elevated numbers. Dr. Nabell said the steroids that I was given during and after infusions could definitely be pushing my heart, etc.
SO, she revised the amount of the steroid shot given right before the infusion, told me NOT to take the steroid pills that were prescribed for 3 days after the infusion, and gave me a prescription for Verapamil, which she described as a beta blocker and would help with my symptoms.
The lesser doses of steroids made me nervous, since I know they have helped me with the first initial days and it had been expressed to me that they were great in keeping my energy up.
BUT I got the Verapamil filled immediately that day, and the next day when I went in for my infusion, my blood pressure was already in normal range. And my heart hasn't been beating in my chest as before.
I also had an echocardiogram done yesterday (Tuesday). This is basically like a sonagram that they do to check on a baby, but they do it to view and hear the heart. The technician said she thought things looked good, but obviously, the doctor would need to review it. My next appointment with Dr. Nabell is next Tuesday (May 5).
The primary bummer from the April 21 appointment was that Dr. Nabell said she believed I need radiation regardless of whether I have a mastectomy or not. She said she reviewed my info with another doctor, and they agreed that they believed the initial site of cancer was right beside the lymph node that basically swallowed it, and so that area needs to be radiated. Decisions will be made in the last months of chemo treatment in terms of surgery and radiation or just radiation. Right now I'm just trying to process this, and I'll learn more about what the treatment is like and what it means as time goes on. I was definitely hoping that possibly surgery would end everything and I could avoid radiation, so I'm wrapping my head around that.
Last week's infusion went fine, with no surprises. Bill took me, and we had a lovely Fish Market dinner BEFORE my appointment. Got home, and just chilled.
On Thursday, I got out in the afternoon to go to church to see the car ministry give a car to a mom and her 23 year old son. The son has been battling leukemia since he was 19, and has recently come out of remission. It was a joy to be with several car ministry folks to turn over the keys to this wonderful mom.
That was the last time I was out of the house until yesterday, when I went for the echo.
I had intended to get out in the morning to go with Bill for his consult with the gall bladder doctor at Kirklin. BUT when I woke up yesterday, I was very nauseated and weak. It occurred to me (finally) to take one of my anti-nausea pills (which I take as needed), and after 4-5 hours, I felt better. Bill took me to the echo, and then we even went to the grocery store (I was out of my Greek yogurt!).
Bill's appointment was very productive. He met with the surgeon, the anesthesiologist, and everyone else who will be involved with his surgery. He went through pre-op, and has everything ready to go. They will go in through his belly button! Who knew? Surgery is scheduled for Friday, May 8, and will take between 4-8 hours. They were very thorough with him about their expectations, which is very comforting. No lifting or heavy work for a couple of weeks, but the following week at some point, he could work as long as he feels like it. They don't anticipate any complications or major issues. Bill will certainly be glad to have this part over, as it's been a concern for how he feels on a daily basis.
So, I'm very happy that we have some things planned, that I am managing my meds and figuring out what to do when I feel crappy. I appreciate everyone's patience in me getting any info out. The weakness in mind and body is very different and difficult to explain. So grateful for my friends who continue to bring meals twice a week.
Caden turned 10 last weekend!! What!!!??? Rachel, Steven and Caden were out of town, so we'll have our time with him this Saturday. So looking forward to it! Ben wants to take him to the zoo or the science center, and we'll have our celebration at some point during all of that.
Ben is working individual days/weeks with different school system bands around the state. He's looking forward to creating new associations/friendships, while expanding his resume! MJ will be starting an internship/job at Children's Hospital emergency room soon.
Love y'all!
Last Tuesday, April 21, Rachel took me to an appointment with Dr. Nabell (who I usually don't see during infusions). I had realized that my heart had been pounding for the past week and a half or so...even when I was just sitting, I could feel my heart racing in my chest. Sure enough, my blood pressure was up, and the blood counts showed some elevated numbers. Dr. Nabell said the steroids that I was given during and after infusions could definitely be pushing my heart, etc.
SO, she revised the amount of the steroid shot given right before the infusion, told me NOT to take the steroid pills that were prescribed for 3 days after the infusion, and gave me a prescription for Verapamil, which she described as a beta blocker and would help with my symptoms.
The lesser doses of steroids made me nervous, since I know they have helped me with the first initial days and it had been expressed to me that they were great in keeping my energy up.
BUT I got the Verapamil filled immediately that day, and the next day when I went in for my infusion, my blood pressure was already in normal range. And my heart hasn't been beating in my chest as before.
I also had an echocardiogram done yesterday (Tuesday). This is basically like a sonagram that they do to check on a baby, but they do it to view and hear the heart. The technician said she thought things looked good, but obviously, the doctor would need to review it. My next appointment with Dr. Nabell is next Tuesday (May 5).
The primary bummer from the April 21 appointment was that Dr. Nabell said she believed I need radiation regardless of whether I have a mastectomy or not. She said she reviewed my info with another doctor, and they agreed that they believed the initial site of cancer was right beside the lymph node that basically swallowed it, and so that area needs to be radiated. Decisions will be made in the last months of chemo treatment in terms of surgery and radiation or just radiation. Right now I'm just trying to process this, and I'll learn more about what the treatment is like and what it means as time goes on. I was definitely hoping that possibly surgery would end everything and I could avoid radiation, so I'm wrapping my head around that.
Last week's infusion went fine, with no surprises. Bill took me, and we had a lovely Fish Market dinner BEFORE my appointment. Got home, and just chilled.
On Thursday, I got out in the afternoon to go to church to see the car ministry give a car to a mom and her 23 year old son. The son has been battling leukemia since he was 19, and has recently come out of remission. It was a joy to be with several car ministry folks to turn over the keys to this wonderful mom.
That was the last time I was out of the house until yesterday, when I went for the echo.
I had intended to get out in the morning to go with Bill for his consult with the gall bladder doctor at Kirklin. BUT when I woke up yesterday, I was very nauseated and weak. It occurred to me (finally) to take one of my anti-nausea pills (which I take as needed), and after 4-5 hours, I felt better. Bill took me to the echo, and then we even went to the grocery store (I was out of my Greek yogurt!).
Bill's appointment was very productive. He met with the surgeon, the anesthesiologist, and everyone else who will be involved with his surgery. He went through pre-op, and has everything ready to go. They will go in through his belly button! Who knew? Surgery is scheduled for Friday, May 8, and will take between 4-8 hours. They were very thorough with him about their expectations, which is very comforting. No lifting or heavy work for a couple of weeks, but the following week at some point, he could work as long as he feels like it. They don't anticipate any complications or major issues. Bill will certainly be glad to have this part over, as it's been a concern for how he feels on a daily basis.
So, I'm very happy that we have some things planned, that I am managing my meds and figuring out what to do when I feel crappy. I appreciate everyone's patience in me getting any info out. The weakness in mind and body is very different and difficult to explain. So grateful for my friends who continue to bring meals twice a week.
Caden turned 10 last weekend!! What!!!??? Rachel, Steven and Caden were out of town, so we'll have our time with him this Saturday. So looking forward to it! Ben wants to take him to the zoo or the science center, and we'll have our celebration at some point during all of that.
Ben is working individual days/weeks with different school system bands around the state. He's looking forward to creating new associations/friendships, while expanding his resume! MJ will be starting an internship/job at Children's Hospital emergency room soon.
Love y'all!
Sunday, April 19, 2015
sometimes it's hard to write
Hi! I am finally getting to writing out some info from the last week and a half...There's nothing bad to report; in fact there's lots of praises. I'm kinda surprised at myself for how hard it's been to get myself to pull up the blog again.
So, yep, I find myself many times not wanting to talk about it, think about it, look in the mirror, or think about the next several months. An appropriate adjective might be overwhelming (at least at times). I am fighting the temptation to withdraw and hide, and love it when I'm out with friends and family.
Some highlights since the last post:
It was so great to watch Ben and Music City Mystique in the WGI Finals in Dayton. Here are a couple of videos:
Finals Warm-ups in the Lot
Finals Performance
During the finals, the tech component didn't connect, which meant their overall effect was not as high as it should/could have been. SO...they went into finals in 2nd place, but ended in 4th. HOWEVER, they had an amazing score of over 96/100, and we couldn't be more proud.
Since in the finals performance above, you don't see what should have been on the TV screens in the back, let me share what you should have seen:
Gamemaster starts loading the sequences that the players have to win against.
Sequences in order are: Predator, Hurricane, Earthquake, Heat, Swarm (knowing that, you can watch the video and understand which sequences the players are reacting to).
Once all the sequences have gone through, the gamemaster begins uploading all sequences at once. This is when the players "fight back" and the cymbal player ultimately triumphs by removing the gamemaster's mask.
The photos below were taken after the finals award ceremony. About half of these young people have officially 'aged' out now, meaning that they can't be performers in WGI again. Ben has one more year to perform with them, and we truly look forward to the next season.
I am so very thankful for mom going with me. Way before I was diagnosed, we had planned to go together for the finals, but it worked out so great. I had treatment on that Wednesday (April 8), and I knew that the weekend was going to be very tiring. We stayed in a great hotel not too far from the stadium. I borrowed a wheelchair from the church, which enabled me not to have to walk so far. In addition, I got tickets in the ADA section (on the main walkway with the bar in front of it). I would have been way overwhelmed if I had sat in the arena seating area with so many people. Lots of things worked out really well.
This was my view:
MJ and her mom, aunt and family friend were at the semi-finals and finals as well. We enjoyed dinner with them and Angela Dickey (Sarah's mom from Hoover....Sarah played synthesizer in the front ensemble and has been an indoor drumline friend since Ben's early high school days with DoubleStop Indoor Percussion time) at the Rusty Bucket restaurant.
Mom and I got back home on Sunday evening, April 12 after a smooth drive home.
Going back to the April 8th treatment day, mom took me to Kirklin so she got to see where that is. I had blood drawn, which they will do now every time before chemo. They check red and white blood counts to make sure they are where they should be.
I had the chance to talk to the nurse about the Dayton trip, and some other general questions. Here's some things I learned:
1. I should not take how I feel for whether or not my blood counts are good. In other words, my counts could be low, but I feel very good, or I feel sick and my blood counts could be fine. She pulled my counts and showed them to me, in relation to the Dayton trip. The counts were all in good range, so she was positive about me going on the trip. We had talked about possibly using a mask, but she didn't think it was going to be necessary, especially if I took breaks in open areas every so often, and sitting in the area where I was was also helpful.
2. These first four treatments (March 25, April 8, April 22, and May 6) are the worst, in terms of the effects of the chemos. I was feeling so good on the morning of the 8th, I asked her if I could count on feeling that good in the 5 days (or so) leading up to the next treatment. She said that there is a cumulative effect, meaning that the April 8th treatment effects would last a little longer, then the 22nd, a little longer than that, and the 6th as being even longer. BUT, good news...she said the last 12 weekly treatments will have less effects than these first four as it's a different chemo. Yay for that!
3. She gave me some advice about the side effects...I can continue to use Ativan as needed for sleep/chill in the evenings, but I can also use Benadryl with similar effect. I need to monitor the anti-nausea medications because they have side-effects, too. The inside of my mouth has become much more 'raw' or sensitive, and the salt/baking soda solution she recommended has helped a lot.
My hair began shedding right before the April 8th treatment. I had it cut very short, but not shaved. Picture going from a pet's shedding to clumps of hair coming out (for you movie buffs, picture the cheerleader in The Craft, whose hair starts coming out due to the young witches curse!). I'm still trying to get comfortable in various hats and scarves, and will try out the wig this next week.
You all know I don't like having my picture taken, so it's awkward for me to get excited about posting pictures of me in the wig or hat or scarves, so if that becomes better for me at a later time, I will let you know!
On the day that we got back from Dayton, the Stop Hunger Now truck had delivered some of the equipment needed for the event to begin on Monday, April 13. So much praise and joy about this amazing event. Our goal had been to raise about $72,500 to pack 250,000 meals through Stop Hunger Now (Website). We had a fantastic team of lay members with some additional assistance from some area churches (ultimately, we had 14 churches support us either financially and/or with volunteers). We raised more than our initial goal! From the 13th-14th, we actually even packed more than our original goal, and packed 251,364 meals! It was totally overwhelming, wonderful, awe-inspiring, amazing, and whatever other adjectives you could use. I was not able to hang out very long at any time that I came in (I got tired very quickly). Probably my favorite time in the Fellowship Hall was walking in on Tuesday at 11:00. We had 100 children from Vestavia East Elementary School with another 100 adults in the room, all happy, dancing, smiling and working! A couple of the kids told their teachers it was their best field trip! And several of the kids brought their parents back for a later shift after school.
I'm still trying to adjust to deciding how to spend my days. At this point, I find that being out and about 2-5 hours a day is gracious plenty, and allows me to see people as well as to have some quality rest.
Bill and I have been so grateful and enjoying meals that people are bringing to us...THANK YOU! I have finally understood what that means to the recipient.
I have a regular appointment/check up with the oncologist on Tuesday, and my next treatment is Wednesday. Rachel is going to my appointment with me.
I guess that's enough for now....I'm reading a book a friend gave me called Fight Back With Joy. One of the things the author says is "Whenever you experience a sense of withness - the awareness that others are alongside you - you can't help but experience the presence of joy." She remarks on Paul's letters to Philemon as recognition of the best kind of people to be around - those who encourage and provide hope and joy.
Though I have moments of isolation, I do acknowledge and SO desire and appreciate your friendships and love.
Peace out!
Denise
So, yep, I find myself many times not wanting to talk about it, think about it, look in the mirror, or think about the next several months. An appropriate adjective might be overwhelming (at least at times). I am fighting the temptation to withdraw and hide, and love it when I'm out with friends and family.
Some highlights since the last post:
It was so great to watch Ben and Music City Mystique in the WGI Finals in Dayton. Here are a couple of videos:
Finals Warm-ups in the Lot
Finals Performance
During the finals, the tech component didn't connect, which meant their overall effect was not as high as it should/could have been. SO...they went into finals in 2nd place, but ended in 4th. HOWEVER, they had an amazing score of over 96/100, and we couldn't be more proud.
Since in the finals performance above, you don't see what should have been on the TV screens in the back, let me share what you should have seen:
Gamemaster starts loading the sequences that the players have to win against.
Sequences in order are: Predator, Hurricane, Earthquake, Heat, Swarm (knowing that, you can watch the video and understand which sequences the players are reacting to).
Once all the sequences have gone through, the gamemaster begins uploading all sequences at once. This is when the players "fight back" and the cymbal player ultimately triumphs by removing the gamemaster's mask.
This photo is from semi-finals at the very end of the show. The TVs were working at semis!
I am so very thankful for mom going with me. Way before I was diagnosed, we had planned to go together for the finals, but it worked out so great. I had treatment on that Wednesday (April 8), and I knew that the weekend was going to be very tiring. We stayed in a great hotel not too far from the stadium. I borrowed a wheelchair from the church, which enabled me not to have to walk so far. In addition, I got tickets in the ADA section (on the main walkway with the bar in front of it). I would have been way overwhelmed if I had sat in the arena seating area with so many people. Lots of things worked out really well.
This was my view:
MJ and her mom, aunt and family friend were at the semi-finals and finals as well. We enjoyed dinner with them and Angela Dickey (Sarah's mom from Hoover....Sarah played synthesizer in the front ensemble and has been an indoor drumline friend since Ben's early high school days with DoubleStop Indoor Percussion time) at the Rusty Bucket restaurant.
Mom and I got back home on Sunday evening, April 12 after a smooth drive home.
Going back to the April 8th treatment day, mom took me to Kirklin so she got to see where that is. I had blood drawn, which they will do now every time before chemo. They check red and white blood counts to make sure they are where they should be.
I had the chance to talk to the nurse about the Dayton trip, and some other general questions. Here's some things I learned:
1. I should not take how I feel for whether or not my blood counts are good. In other words, my counts could be low, but I feel very good, or I feel sick and my blood counts could be fine. She pulled my counts and showed them to me, in relation to the Dayton trip. The counts were all in good range, so she was positive about me going on the trip. We had talked about possibly using a mask, but she didn't think it was going to be necessary, especially if I took breaks in open areas every so often, and sitting in the area where I was was also helpful.
2. These first four treatments (March 25, April 8, April 22, and May 6) are the worst, in terms of the effects of the chemos. I was feeling so good on the morning of the 8th, I asked her if I could count on feeling that good in the 5 days (or so) leading up to the next treatment. She said that there is a cumulative effect, meaning that the April 8th treatment effects would last a little longer, then the 22nd, a little longer than that, and the 6th as being even longer. BUT, good news...she said the last 12 weekly treatments will have less effects than these first four as it's a different chemo. Yay for that!
3. She gave me some advice about the side effects...I can continue to use Ativan as needed for sleep/chill in the evenings, but I can also use Benadryl with similar effect. I need to monitor the anti-nausea medications because they have side-effects, too. The inside of my mouth has become much more 'raw' or sensitive, and the salt/baking soda solution she recommended has helped a lot.
My hair began shedding right before the April 8th treatment. I had it cut very short, but not shaved. Picture going from a pet's shedding to clumps of hair coming out (for you movie buffs, picture the cheerleader in The Craft, whose hair starts coming out due to the young witches curse!). I'm still trying to get comfortable in various hats and scarves, and will try out the wig this next week.
You all know I don't like having my picture taken, so it's awkward for me to get excited about posting pictures of me in the wig or hat or scarves, so if that becomes better for me at a later time, I will let you know!
On the day that we got back from Dayton, the Stop Hunger Now truck had delivered some of the equipment needed for the event to begin on Monday, April 13. So much praise and joy about this amazing event. Our goal had been to raise about $72,500 to pack 250,000 meals through Stop Hunger Now (Website). We had a fantastic team of lay members with some additional assistance from some area churches (ultimately, we had 14 churches support us either financially and/or with volunteers). We raised more than our initial goal! From the 13th-14th, we actually even packed more than our original goal, and packed 251,364 meals! It was totally overwhelming, wonderful, awe-inspiring, amazing, and whatever other adjectives you could use. I was not able to hang out very long at any time that I came in (I got tired very quickly). Probably my favorite time in the Fellowship Hall was walking in on Tuesday at 11:00. We had 100 children from Vestavia East Elementary School with another 100 adults in the room, all happy, dancing, smiling and working! A couple of the kids told their teachers it was their best field trip! And several of the kids brought their parents back for a later shift after school.
I'm still trying to adjust to deciding how to spend my days. At this point, I find that being out and about 2-5 hours a day is gracious plenty, and allows me to see people as well as to have some quality rest.
Bill and I have been so grateful and enjoying meals that people are bringing to us...THANK YOU! I have finally understood what that means to the recipient.
I have a regular appointment/check up with the oncologist on Tuesday, and my next treatment is Wednesday. Rachel is going to my appointment with me.
I guess that's enough for now....I'm reading a book a friend gave me called Fight Back With Joy. One of the things the author says is "Whenever you experience a sense of withness - the awareness that others are alongside you - you can't help but experience the presence of joy." She remarks on Paul's letters to Philemon as recognition of the best kind of people to be around - those who encourage and provide hope and joy.
Though I have moments of isolation, I do acknowledge and SO desire and appreciate your friendships and love.
Peace out!
Denise
Tuesday, April 7, 2015
Delayed Update!
Hi everybody! Holy Week was so great for several reasons...great Lenten lunches and speakers, services, Easter morning with Caden, then Easter lunch with Ben, Caden, Rachel and Steven, and Lynne. Saturday had Bill, Ben and I going up to Smyrna, TN for family night, Music City Mystique. It was FAB! We watched a little bit of rehearsal, then the group came out and did a 'concert-type' version of the show, and then did the whole show. They've continued to tweak the show and the changes make it even better!
On Friday, Cathy and I went to Good Friday service, and then went looking at wigs and hats. Then today (Tuesday), we went with Rachel to check out eyebrow makeup! I know for you guys that doesn't mean anything, but you ladies will know how important it is to have SOMETHING above your eyes!!
Mom came into town tonight, and she'll take me to treatment tomorrow (Wednesday). I go in at 11:00 for blood work, which they will check each treatment time for red and white blood cell levels. Treatment starts at 12:00. They were very accurate last time with the length of time (about 2.5 hours).
The nurses were also very accurate with their predictions of symptoms, etc. I've got some questions to ask tomorrow, in terms of how similar will this next time be to the last time, and how different or similar will the treatments be after the initial four treatments (when I start the weekly treatments). These last four-five days have felt pretty normal, and it would be nice to know if I could expect that each time.
My hair has started falling out...I noticed that my arms are completely hairless today. I have some major sensitivity in my mouth (which has the cells that frequently generate like hair). I got my hair cut very short this afternoon so that the hair falling out won't seem so bad (I hope).
I have worked with Malinda to take a couple of months off of work (thank you Malinda!). My goal would be to really focus on friends and family (which sure includes many of my church peeps) on those days where I feel good. I know the 2 months will go quickly! Everyone has been so great to help out and be supportive.
HOWEVER, I can say with MUCH JOY that VHUMC folks made our goal of $72,500 during the Lenten season (and with some partnerships with other churches). This will allow us to package 250,000 meals for Stop Hunger Now (www.stophungernow.org) next Monday and Tuesday. So excited!
I'm also really looking forward to mom and I going up to Dayton this weekend (I know that sounds a little crazy, and it is), but Ben's group is performing in the WGI World Championships! Thursday night are preliminaries, Friday is semi-finals and Saturday is finals. Their group won first at the Regionals, and they are in very good standing to win the whole thing. It's been several years since they've placed first, so it is VERY exciting!!
So, it's good to go into tomorrow's treatment knowing that I have something to look forward to soon. We are planning to rest during the day and then get to the shows in the evenings for about an hour or so (as energy levels go).
Hope that y'all are well, and reveling as Easter people.
Denise
From Saturday:
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