Well, I am home! I have never been so happy to be home in my life. My hospital stay was not a vacation that I want to re-visit anytime soon. It started in the ER on Tuesday night where they tried to control my pain with an IV pain medication. The meds would work for a short period and then ware off. I was admitted after answering the same questions over and over. I was finally up in my room by bedtime. Again answered the same questions because the ER and the hospital do not communicate I guess. All the while, I could not get any pain medication until the on-call Dr. received all of the questions that I answered twice at this point. So all of us were pretty upset, me the most because the pain was getting worse and worse.
Wednesday I was supposed to have mapping / planning for my radiation treatments that were going to be done what I was originally told 1-2 weeks. Luckily the radiation department agreed to still do this and planned to come get me for this appointment. Before my appointment, Dr. McCall, the Radiation Oncologist came to visit and informed me that my Doctor was incorrect and the radiation was not going to be 1-2 weeks, but 5 weeks. This upset me, but I decided I should go ahead with the planning and decide later if I wanted to give up chemo for 5 weeks for my pain relief. So they wheeled me down for the mapping.
Insert here where our lives were changed: During mapping they do a CT scan to ensure the radiation is treated in the correct spots. During this I was in a lot of pain and Dr. McCall came in and asked if I have a problem sleeping or laying flat. The question didn't bother me because I do not lay flat a lot because I love pillows. She told me there was fluid around my right lung that was not there in April for my last scan. So from there I was taken to another location for an Iodine CT Scan. I thought this was it and in the mean time I had talked to the Oncologist on call and Dr. McCall. We all knew what this meant: The cancer had set up shop in my right lung. I was finally back to my quiet room waiting for Don and mom to arrive. I found myself staring out the window in disbelief. How could this be happening. I did not have any shortness of breath, the doctors listen to my lungs at every appointment and did several times even during this visit and everyone said they sounded clear. I was devastated. I thought this was as bad as it was going to get but it got worse. The nurse came to my room and transported Don and I to another room for a lung aspiration. This is where they place a tube in your back between your ribs and drain the fluid. While the skin was numb, I could feel the tube go through my skin and I knew what was going on. This test was the one that made it all real to me.
I again was returned to my safe place - my room to rest and see mom, dad and Wendy. I was very groggy from pain medicine but also just in a fog. What does this mean. How could this have been missed. Was this the cause of the pain. Just several things running through my mind. All I wanted was to come home. That feeling I experienced when I was originally diagnosed and I knew that if I were home, they couldn't hurt me. They couldn't do more tests and discover more things that I could not handle at this time. I was adamant with the Oncologist that I wanted to be at home, I did not want to be there. They had me stay last night to ensure that my pain medications were at the right level for future. Luckily it was.
Today the Oncologist came to see me. Although pathology isn't back yet, we both know that the cancer is in the lung. I told him at this time I do not want anymore information. I just need final confirmation that it is cancer, I don't need size or if there is more than one nodule in the lung. Next steps are I will be changing doctors more than likely to one in the city that can better manage my disease. I will meet with her next Wednesday. More than likely my treatment will consist of chemo.
While this is bad news, we do have the pain somewhat managed. Still with pain medication, but some of this pain was probably caused from my lung being filled with fluid. I again did not know it was filled due to not having symptoms of shortness of breath, but they do believe that as time goes on the pain will subside more in my neck, shoulder and back from the drainage.
Prayers right now that we can find the right chemo to remove the cancer from my lung, but if we can't to control it. This is not good news and frightens me and everyone else deeply. It is scary to think of cancer invading my lungs and making it impossible to breath. So prayers also for our strength and courage and for the new doctors to find something to make this all better. I can not be broken like this. Please keep us all in your thoughts and prayers and we process this news.
Love,
Amber
Thursday, July 17, 2014
Tuesday, July 15, 2014
Sorry This is a Long One
Good Morning! These past few weeks have been busy weeks. I wish I could say busy as in so much fun that I have not had time to think or write about cancer, but that is not entirely true. Somewhat-but not all why I have not updated.
To start with the good news! Mom is here! She arrived on July 3rd. Our family was at the lake, but dad and Whitney were here to greet her and welcome her! Dad got the job! He actually started today. He is a bit nervous being the new kid, but Justin let him know he will do fine making friends and reminded him it is just like going to camp where you don't know anyone. Whitney got the job! Whitney started her job yesterday out in Washington DC. She won't be working out there, but they do the first weeks training out there. She too was nervous, but after talking to her last night, I really can hear the excitement in her voice. Seems like this company will be a good fit for her. Don started a new job! Don has been questioning leaving his company for awhile and when he received an offer from a competing company, he decided it was not something he could pass up. He had been at his previous company almost 10 years. It was a great time for him to make a change. Mom and dad close on their house mid August. Most know that Dad, Whitney and I picked out the house and dad put an offer on it and got it without mom seeing it. That took some big time trust! Well, luckily mom saw it last week and loved it so we did good! They will close in August and I think are excited to get settled with their own stuff again. I will miss them here but know like everyone else, they are a phone call away should we need something. One more big thing (I'm sure I have forgotten some), but Jess and her family were here last week. We had an awesome week. A lot of visiting, time in the cars, swimming, baseball, etc. Justin loves having all of these boys in the house since of course all he wants to do every night is play a base ball game or soccer game. So it was great to have more boys who are just as anxious and excited to get outside and be competitive. We did some stuff around here and also took them up to the lake for 2 days. It was a great get away with great weather! We did a lot of boating and the kids were able to do some tubing on the lake since it was so calm with no one really being there during the week.
Cancer front / yucky parts! Ever since my doctor has informed me that one of my levels was rising, I have been very anxious and very in tune with my body and realize very much so that the chemo I was on was not working. I also was having pain issues that I felt were getting out of control again. Sleepless nights, not being able to get comfortable even in a seating position, shortness of breath because the pain was so unbearable. You name it, I had it along with pain that is still localized in the right chest area. I e-mailed Dr. Phillips a few weeks ago and let her know that I would be there that week for chemo and I would do as she asked and finish that cycle but I wanted a new plan and I needed an increase in pain meds. When she didn't respond, I called and found out she was on vacation. Luckily one of her associates could help with the pain medicine situation, but could not help with the plan after this chemo cycle. So the Wednesday of the 4th, I e-mailed Dr. Phillips again and asked her to have a plan for me when we meet on July 11th. I also asked her to find a new pain management plan instead of just increasing my doses of current meds since they were not working. I think you reading this can tell I am getting a bit irritated at the plan my doctor has put in place for me. It is tough though to go in and address these things. I get she is not God and can't fix all of my problems, but I do believe that she has the power to fix my pain issues so that I can get that behind me and use all of my strength fighting cancer and or being with my family. Upping my doses on meds that make me sleepy makes it very difficult to do anything. I can't drive at times, I sleep so much that I don't see my kids, husband or mom and dad. I don't want to live this way. So I needed to address this with her, but I guess my concern was coming off upset. I picture if I were the doctor and a patient came at me upset, I would think the patient is upset because they can't rid themselves of cancer and they need someone to be mad at so they are mad at the doctor. That is not the case for me. I am happy with her so long as I feel she is doing everything in her power to treat me. I know there are things that are out of her hands. For instance, if a treatment doesn't work, I get it. It sucks, but it is not her fault. But again, when I'm on the phone weekly asking for pain meds to be changed, I think there is more she could be doing.
So after this email I received a response front he trial coordinator in regards to a trial I may qualify for in Boston. We were at the lake at this point so I asked her to send me an attachment with the trial information. When I received it, it stated it was a Phase 1 trial. This means it is the first time being treated on humans. I get that trials have to start somewhere, but in my condition, I do not feel comfortable starting in a phase 1 trial especially in Boston. I panicked and e-mailed the coordinator back explaining my concern and then asked a tough question: are you giving me this trial because I am out of approved drugs to use to fight this. She responded that this is not the case and to call her. So I spent some time on the phone with Kristin and she explained that they were thinking a trial requiring travel might be something I should do right now. It was going to be a drug with very little toxicity and as we continue with the drugs here, they are only going to get harder and their opinion is to travel while I can and then do the harder drugs as my body starts to wear out and I need to be around my kids. I told her I would call Boston to get more information, but yeah right!!! My body will not give up to these tougher drugs! So I contacted Boston and learned that the trial is an 8 week cycle. Basically you are seeing a doctor or getting chemo throughout the 8 week time so I would need to live there and if it worked, plan to stay to start another 8 week cycle. The trial is currently full. He anticipated there being an opening in 5-6 weeks but if you have to have a 3 week wash out period from chemo. So I asked if I had started a chemo, would they wait the 3 weeks for me to go off of treatment and he said it would depend if there were others waiting and that could start right away. Don and I have decided to not rule this out, but leave it in God's hands. If it is meant to be, it will happen. In the mean time, move on move on! The rest of our trip for the 4th was uneventful.
Last week we went up with Jessica and family on Wednesday afternoon and stayed through Friday. On Thursday while at the lake, I came in from boating with Ryan and mom to lay Ryan and I down for a nap. During this time, my pain intensified to the point where I was crying and having a hard time getting comfortable. I took my pain meds but they did not work. Whitney, Jess and mom took turns massaging my back, bringing me ice packs while Don brought in and took out at my request my bio mat. It was a lot of work on them and what makes it so much worse is I hate them seeing me like this. They can not fix it but try so hard. I don't want to tell them to stop because a massage calms me down, but really they can't take the pain away like they want. So it almost makes it worse for me. I don't know actually what is worse: being in pain, or being in their position. Both are so frustrating!
Friday Don and I headed to see Dr. Phillips in the afternoon. I first saw the nurse and when she asked how I was tolerating chemo I started crying (I wanted to hold back as much as possible) I told her this drug was not working and I had planned to talk to Dr. Phillips about it. She is so sweet and reminded me that I have such a crowd of fans at the hospital and they do not want to see me upset or giving up. I let her know there is no giving up, just sad and frustrated. But it feels so good to know that everyone there is behind me! When we saw Dr. Phillips she was filled with ideas on pain management. She decided that pain needed to be bumped up to first priority and cancer being 2nd for now. We decided that I will do some palliative radiation (Palliative means not cancer fighting but helps with quality of life) She had my radiation doctor, Dr. McCall come see me and she looked at the area and felt 5-10 treatments could help stop the nerve endings from continuing to bother me. Next she called a doctor for pain management. She told me he is very hard to get in to so to keep my phone by me because they would be calling to schedule an appointment. Finally she wants me to visit the wound center because some of my skin on the chest wall is cracking from being dried out from the chemo. It is so much so in areas that when I shower, the bad skin falls off and then it bleeds. I have done a great job taking care of the area, but one bad infection could hurt me so it is time to see the wound center.
Dr. Phillips then discussed the cancer with Don and I. I let her know my concern with rising level and she explained to me she goes more by physical exam than a blood test that could fluctuate by time of day, something I ate, etc. So she feels that since I do not have symptoms else where, my other blood work looks good, my physical exams always go over well, that we need to fix the pain these next couple of weeks and then get back on chemo. So prayers for this cancer to just stop would be great!
I met with the pain Doctor yesterday who is actually an anesthesiologist. He examined me and felt that putting nerve blockers in would block some of the nerves. He said we would try this for a couple of weeks and if it doesn't work, we could to a nerve ablation which is where they go in and actually burn the nerve endings. None of this is permanent so this will be added appointments as the pain comes back. So yesterday we started with 4 nerve blockers. These were done under my right armpit (On top of all the red inflammation -YES). He had to turn on the x-ray because they are placed around the ribs. I was asked to lay on my left side with my arms all goofy so they could get to this area. I was already uncomfortable because of the way my arms were it was hurting my chest wall, but I thought manage through it, this is going to take the pain away. Next was the insertion of the blockers. I cried like a baby. It was the most painful thing ever. I do feel I have a high tolerance of pain, but this was horrible. The entire time I kept thinking he mentioned having to come back for more, I can't do this. When he completed he apologized and explained that until he got in there did he realize how much inflammation there was so next time he would do a twilight sedation. Thank Goodness!
If you are still hanging in on this long blog, Mom and I left that appointment and headed to the city to meet with Father Rookie. I was referred to him by one of Justin's classmates mothers. He is a healing priest and used to travel the world helping others. We arrived early so we were invited to look at the Basilica which was beautiful. Then we went to a room big enough for 5 people and we did the healing service. The service was special. After prayer, he sprinkled us with holy water and anointed us with holy oil. When the service ended we talked to Father Rookie some in regards to his travel. This is when we learned he was 98 years old! What a special man with such a talent. I am so happy I was referred to him and that he prayed over me and my mom. It will be something we will always remember and cherish.
Tomorrow I have radiation mapping, which is where I lay on a table for a few hours while the radiation techs mark me up to make sure they are radiating the right areas. Once this is done a mold is made for me to use every day for radiation and I can't remember from last time, but the treatment starts fairly quickly from there. Friday I will see the wound specialist and then that brings the weekends which consist of Nascar down at the track for Justin and Don. I am invited but it will be a day before decision. I am not sure I can sit in the chairs that long.
Thank you for taking the time to read this, I know there was a lot of information. I should update more often so it doesn't get this long. Please continue the prayers for my pain to be taken away, the cancer to go away but if not go away STAY while we work on these other areas.
Love,
Amber
To start with the good news! Mom is here! She arrived on July 3rd. Our family was at the lake, but dad and Whitney were here to greet her and welcome her! Dad got the job! He actually started today. He is a bit nervous being the new kid, but Justin let him know he will do fine making friends and reminded him it is just like going to camp where you don't know anyone. Whitney got the job! Whitney started her job yesterday out in Washington DC. She won't be working out there, but they do the first weeks training out there. She too was nervous, but after talking to her last night, I really can hear the excitement in her voice. Seems like this company will be a good fit for her. Don started a new job! Don has been questioning leaving his company for awhile and when he received an offer from a competing company, he decided it was not something he could pass up. He had been at his previous company almost 10 years. It was a great time for him to make a change. Mom and dad close on their house mid August. Most know that Dad, Whitney and I picked out the house and dad put an offer on it and got it without mom seeing it. That took some big time trust! Well, luckily mom saw it last week and loved it so we did good! They will close in August and I think are excited to get settled with their own stuff again. I will miss them here but know like everyone else, they are a phone call away should we need something. One more big thing (I'm sure I have forgotten some), but Jess and her family were here last week. We had an awesome week. A lot of visiting, time in the cars, swimming, baseball, etc. Justin loves having all of these boys in the house since of course all he wants to do every night is play a base ball game or soccer game. So it was great to have more boys who are just as anxious and excited to get outside and be competitive. We did some stuff around here and also took them up to the lake for 2 days. It was a great get away with great weather! We did a lot of boating and the kids were able to do some tubing on the lake since it was so calm with no one really being there during the week.
Cancer front / yucky parts! Ever since my doctor has informed me that one of my levels was rising, I have been very anxious and very in tune with my body and realize very much so that the chemo I was on was not working. I also was having pain issues that I felt were getting out of control again. Sleepless nights, not being able to get comfortable even in a seating position, shortness of breath because the pain was so unbearable. You name it, I had it along with pain that is still localized in the right chest area. I e-mailed Dr. Phillips a few weeks ago and let her know that I would be there that week for chemo and I would do as she asked and finish that cycle but I wanted a new plan and I needed an increase in pain meds. When she didn't respond, I called and found out she was on vacation. Luckily one of her associates could help with the pain medicine situation, but could not help with the plan after this chemo cycle. So the Wednesday of the 4th, I e-mailed Dr. Phillips again and asked her to have a plan for me when we meet on July 11th. I also asked her to find a new pain management plan instead of just increasing my doses of current meds since they were not working. I think you reading this can tell I am getting a bit irritated at the plan my doctor has put in place for me. It is tough though to go in and address these things. I get she is not God and can't fix all of my problems, but I do believe that she has the power to fix my pain issues so that I can get that behind me and use all of my strength fighting cancer and or being with my family. Upping my doses on meds that make me sleepy makes it very difficult to do anything. I can't drive at times, I sleep so much that I don't see my kids, husband or mom and dad. I don't want to live this way. So I needed to address this with her, but I guess my concern was coming off upset. I picture if I were the doctor and a patient came at me upset, I would think the patient is upset because they can't rid themselves of cancer and they need someone to be mad at so they are mad at the doctor. That is not the case for me. I am happy with her so long as I feel she is doing everything in her power to treat me. I know there are things that are out of her hands. For instance, if a treatment doesn't work, I get it. It sucks, but it is not her fault. But again, when I'm on the phone weekly asking for pain meds to be changed, I think there is more she could be doing.
So after this email I received a response front he trial coordinator in regards to a trial I may qualify for in Boston. We were at the lake at this point so I asked her to send me an attachment with the trial information. When I received it, it stated it was a Phase 1 trial. This means it is the first time being treated on humans. I get that trials have to start somewhere, but in my condition, I do not feel comfortable starting in a phase 1 trial especially in Boston. I panicked and e-mailed the coordinator back explaining my concern and then asked a tough question: are you giving me this trial because I am out of approved drugs to use to fight this. She responded that this is not the case and to call her. So I spent some time on the phone with Kristin and she explained that they were thinking a trial requiring travel might be something I should do right now. It was going to be a drug with very little toxicity and as we continue with the drugs here, they are only going to get harder and their opinion is to travel while I can and then do the harder drugs as my body starts to wear out and I need to be around my kids. I told her I would call Boston to get more information, but yeah right!!! My body will not give up to these tougher drugs! So I contacted Boston and learned that the trial is an 8 week cycle. Basically you are seeing a doctor or getting chemo throughout the 8 week time so I would need to live there and if it worked, plan to stay to start another 8 week cycle. The trial is currently full. He anticipated there being an opening in 5-6 weeks but if you have to have a 3 week wash out period from chemo. So I asked if I had started a chemo, would they wait the 3 weeks for me to go off of treatment and he said it would depend if there were others waiting and that could start right away. Don and I have decided to not rule this out, but leave it in God's hands. If it is meant to be, it will happen. In the mean time, move on move on! The rest of our trip for the 4th was uneventful.
Last week we went up with Jessica and family on Wednesday afternoon and stayed through Friday. On Thursday while at the lake, I came in from boating with Ryan and mom to lay Ryan and I down for a nap. During this time, my pain intensified to the point where I was crying and having a hard time getting comfortable. I took my pain meds but they did not work. Whitney, Jess and mom took turns massaging my back, bringing me ice packs while Don brought in and took out at my request my bio mat. It was a lot of work on them and what makes it so much worse is I hate them seeing me like this. They can not fix it but try so hard. I don't want to tell them to stop because a massage calms me down, but really they can't take the pain away like they want. So it almost makes it worse for me. I don't know actually what is worse: being in pain, or being in their position. Both are so frustrating!
Friday Don and I headed to see Dr. Phillips in the afternoon. I first saw the nurse and when she asked how I was tolerating chemo I started crying (I wanted to hold back as much as possible) I told her this drug was not working and I had planned to talk to Dr. Phillips about it. She is so sweet and reminded me that I have such a crowd of fans at the hospital and they do not want to see me upset or giving up. I let her know there is no giving up, just sad and frustrated. But it feels so good to know that everyone there is behind me! When we saw Dr. Phillips she was filled with ideas on pain management. She decided that pain needed to be bumped up to first priority and cancer being 2nd for now. We decided that I will do some palliative radiation (Palliative means not cancer fighting but helps with quality of life) She had my radiation doctor, Dr. McCall come see me and she looked at the area and felt 5-10 treatments could help stop the nerve endings from continuing to bother me. Next she called a doctor for pain management. She told me he is very hard to get in to so to keep my phone by me because they would be calling to schedule an appointment. Finally she wants me to visit the wound center because some of my skin on the chest wall is cracking from being dried out from the chemo. It is so much so in areas that when I shower, the bad skin falls off and then it bleeds. I have done a great job taking care of the area, but one bad infection could hurt me so it is time to see the wound center.
Dr. Phillips then discussed the cancer with Don and I. I let her know my concern with rising level and she explained to me she goes more by physical exam than a blood test that could fluctuate by time of day, something I ate, etc. So she feels that since I do not have symptoms else where, my other blood work looks good, my physical exams always go over well, that we need to fix the pain these next couple of weeks and then get back on chemo. So prayers for this cancer to just stop would be great!
I met with the pain Doctor yesterday who is actually an anesthesiologist. He examined me and felt that putting nerve blockers in would block some of the nerves. He said we would try this for a couple of weeks and if it doesn't work, we could to a nerve ablation which is where they go in and actually burn the nerve endings. None of this is permanent so this will be added appointments as the pain comes back. So yesterday we started with 4 nerve blockers. These were done under my right armpit (On top of all the red inflammation -YES). He had to turn on the x-ray because they are placed around the ribs. I was asked to lay on my left side with my arms all goofy so they could get to this area. I was already uncomfortable because of the way my arms were it was hurting my chest wall, but I thought manage through it, this is going to take the pain away. Next was the insertion of the blockers. I cried like a baby. It was the most painful thing ever. I do feel I have a high tolerance of pain, but this was horrible. The entire time I kept thinking he mentioned having to come back for more, I can't do this. When he completed he apologized and explained that until he got in there did he realize how much inflammation there was so next time he would do a twilight sedation. Thank Goodness!
If you are still hanging in on this long blog, Mom and I left that appointment and headed to the city to meet with Father Rookie. I was referred to him by one of Justin's classmates mothers. He is a healing priest and used to travel the world helping others. We arrived early so we were invited to look at the Basilica which was beautiful. Then we went to a room big enough for 5 people and we did the healing service. The service was special. After prayer, he sprinkled us with holy water and anointed us with holy oil. When the service ended we talked to Father Rookie some in regards to his travel. This is when we learned he was 98 years old! What a special man with such a talent. I am so happy I was referred to him and that he prayed over me and my mom. It will be something we will always remember and cherish.
Tomorrow I have radiation mapping, which is where I lay on a table for a few hours while the radiation techs mark me up to make sure they are radiating the right areas. Once this is done a mold is made for me to use every day for radiation and I can't remember from last time, but the treatment starts fairly quickly from there. Friday I will see the wound specialist and then that brings the weekends which consist of Nascar down at the track for Justin and Don. I am invited but it will be a day before decision. I am not sure I can sit in the chairs that long.
Thank you for taking the time to read this, I know there was a lot of information. I should update more often so it doesn't get this long. Please continue the prayers for my pain to be taken away, the cancer to go away but if not go away STAY while we work on these other areas.
Love,
Amber
Thursday, June 19, 2014
2 Year Cancerversary
While reading through last years posts to reflect on my 2 year cancerversary, I have mixed emotions. So like I love to do, I will put them out there in writing to share with you and also as I say, to cry in my corner while I write and you can cry in yours (I'm hoping that isn't the angel this update is going to go but I just type it-don't shoot the messenger:)))
Last year I was filled with joy and curiosity as my career with Porsche came to an end and Don and I had all intentions for me to join the work force again after taking the summer off to breath and catch up on life. I enjoyed my summer so much- exercising daily, reading about eating the right foods and using my juicer, playing with the kids, visiting friends, traveling, doing our first family vacation....learning to let go of the side after the huge tidal wave tried to take me down one nasty June day in 2012.
August arrives and I find several lumps (mosquito bite size) on my right breast. I see a general doctor because I'm done with cancer and besides 6 month follow ups, I was cleared to my regular doctor. My general doctor takes a look and says it is mosquito bites and to use a cortisone cream and sends me on my way. Not before though I realized she didn't pass the sniff test-she asked when my next mammogram is. I get she is not an oncologist or breast surgeon, but most of you are probably scratching your heads (if you aren't, then use this as a teaching lesson) and saying why would you get a mammogram when you had all tissue removed with a mastectomy? So in true Amber fashion, I tell Don, my parents and Wendy not to worry, it is nothing and I just want to see my breast surgeon for a second opinion. I truly WAS NOT worried. August 23rd proved me wrong yet again and turned our world upside down a second time.
I remember Dr. Bethke's resident examining me and saying "yeah I don't think it is cancer but let's have Dr. Bethke take a look". If you are going into the field of becoming a Doctor or nurse, please do not share your opinion with a patient -share it with the doctor….Anyways, I sat there waiting for Dr. Bethke and was kind of doing the happy dance because of the resident and continued to plan our approaching Disney trip. Dr Bethke comes in and is reserved as it is, he wants a biopsy because of the triple negative....then he did the standard "feel for enlarged lymph nodes" armpits quick exam-seemed fine, collar bone-perplexed look and then over to the counter in the exam room I look over his shoulder and see him use a red marker and place am "x" on a picture of a females body around the right collar bone. I knew it, he didn't have to say a word! Next came the words I have heard before "Amber please take a seat"....I quickly move from the exam table to the chair and say to him, " when will I learn I can't come to appointments like these alone?" Remember I was diagnosed alone too because as much as my instinct works to get second third and fourth opinions, I guess I'm off on the going to these second third and fourth opinions on my own.
The next few weeks were a whirlwind because what I knew about this recurrence a lot did not. I had to explain a lot and make decisions a lot based off of the recurrence. A recurrence automatically moves you to a stage 4 cancer patient. I argued my points, which I thought were valid: the lymph node location and chest wall being the only impacted area would have made me a stage 3c if this were my first rodeo, but if you have done chemo and have a recurrence, you are looking at stage 4. Our decisions ranged from whether to go to Disney or not (2 weeks away from the recurrence diagnoses), should I go back to work ( had an interview prior to learning of recurrence so do I work and be normal or enjoy what time I have with my family and kids) accept social security as a form of income, letting Justin in on the recurrence when Justin was already having a hard time adjusting to first grade. All of these were just the initial decisions. Later came explaining to family and friends what stage 4 metastatic breast cancer means. Trying to stay positive for them while I educated them so they didn't get scared. Trying to stay positive all the while knowing that the double whammy of having triple negative breast cancer along with a grade 3 tumor (growth factors: 1 is slow growing and 3 is the highest so take it from there). Learning and explaining to others the use of chemo for a metastatic breast cancer patient is not finding the right chemo to rid the body of cancer, it is to find the right chemo to stay ahead of the cancer so it does not spread further than it already has. I would like to say looking back that Don and I did our best with our families and held things together as well as we could without looking naive at our odds and taking the news and trying to make the best of it, but I know we aren't perfect and nor would any of you if you were handed this bag of garbage or if you are living with this bag of garbage.
Throughout this past year, I have tried my best to live my life as wisely as possible. That included making decisions with the free time I had and who to spend it with. I didn't want negativity. I wanted people in my life that cared to understand my diagnoses. Cared about my family's well being and stepped in and did what they could to protect us. I didn't want to be a burden to others, and I understand that some might have a fear of what is or isn't appropriate to say to one going through this. Especially when you add in there our age, most of my friends and family have not had to deal with this type of news at this stage in our life. But I did decide that if you can't be there when I'm at my lowest, I certainly don't want you there at the grand finale that I hope someday to finally get -where we learn I beat the odds.
I love when a friend or family member comes to me for an ear to listen. I hate when they say "I hate to burden you with this because it is nothing compared to what you are dealing with." You see it is something. My something may not have answers, but everyone has their battles, so with that I say, I do genuinely care and want to understand your current struggle. At times I feel that I am a better ear than others or than I used to be. I will correct someone if I think it is a fruitless argument. I will play the devils advocate to help a friend understand where the other person is coming from. I guess my point is, I feel that going through cancer and cutting out some negativity has made me a better person and with me being a better person, I feel I have rubbed some of that off on others.
I'm not preaching that I know I do not have this perfect life and never complain about things or don't make bad calls. Don and I are constantly trying to remember to let go of the stressors or things that get to us that we can not control. We sometimes find ourselves on separate pages and not communicating or understanding each others points. This is difficult because like you hear constantly: cancer will make or break a family. I refuse to let it break us. We are stronger than cancer. To make it though, we have to fight harder when we are completely worn to the bone tired. Sad to the point where tears won't flow, but sometimes happier at the smallest thing that in our old normal life, we may have looked past because we were too busy to see it. But most of all, we are constantly reminding one another of the things that are out of our control (insurance, cancer, scans, sudden deaths in the family, etc)
This past year, I also joined a church. Don and I attended every once in awhile to his church growing up and we love Pastor Don, but we needed something closer. So Whitney and I made some rounds over Christmas and found the perfect church on of all nights but Midnight Mass. The music had me at hello! From organs to bells to piano to flute....beautiful! The following Sunday being greeted by Pastor Dave and him recognizing that we were returning guests helped even more. But most of all is the fact that Peace Lutheran Church does a healing service once a quarter (I believe don't quote me) at their Saturday night service. They ask if you or someone is in need of prayers you go up and announce to the Pastor your healing request and they pray right there with you. When I attended this service in January, I was only going here for a few weeks, I had hair due to the current treatment not robbing me of that. I whispered to Pastor Dave what was going on and that I needed prayers for an upcoming scan and his jaw almost hit the floor. I think this shocked him! Ever since then, Pastor Dave has followed my blog, added me to a prayer list at church and checks on me and provides me with projects to keep me busy! It is like he got me right away. He realized I wanted to join a church that felt welcoming and was right down the road. In my opinion, he kind of just took me in under his wing and has made me feel closer to God than I have in a long time. Attending his service and listening to his sermon I leave thinking "thank you, I needed that, it was written for me". At times this gives me a refreshed look at life and I change my ways. Other times I think how well off I am when you hear of others who are walking their struggles alone. So church was also added to my year and I love it!
There are many other things we have accomplished between my first and second cancerversary, but I don't want this to be a book, just a blog…..In January, learning that my chemo pill had stopped working, mom and dad were here with me for those results. That Sunday I took them to the airport and I was sad and so were they. We learned that I was invincible and that I wasn't going to walk away with just a few scrapes and bruises and that my fight was going to continue to get harder and harder. Two days after they were home mom called me from work and told me they had talked to a realtor and pending the house selling, they were moving up. I wanted so badly to kick and scream and tell them not to do that for me, but my life was crumbling before my eyes. I knew from previous experience, chemo was going to fatigue me and I was going to need more help with the kids. I knew with the cancer moving on us was just another step closer to the end prognosis-I'm still not able to see the end of the road, but know it will someday come-for all of us, but mine is maybe just a little more clear than yours. So with that, I want my mommy and daddy! I want them around to pal around with. I want them to come here or us go there and hang out on a weekend. Have sleep overs with the kids, have them get to Doctor appointments with me to help them fully understand all of this so I don't always have to be the messenger. So the house went up and a day later it went off the market because it was purchased- is this not a sign that they made the right decision? I know it was a HUGE decision. Being close to retirement but needing benefits, leaving 2 jobs that they had security with. But who would not do that for their daughter or son?! I was thrilled and even more thrilled that I didn't have to make the request that they and God made the decision and God is walking them through all of the remaining steps along the way. Dad is here and mom will drive up after July 1st. They have a verbal sale agreement on a home that is gorgeous, but as of right now, not the actual contract yet. Dad has had a couple promising interviews with some great companies and hopefully within the next couple of weeks he will be back out there working. He asks to save your prayers for something else, but I do request prayers for this.
On the cancer front for this week, I had chemo yesterday and received both drugs. This will be my first full round of receiving 2 drugs the first week, 1 drug next week and 2 drugs on week 3. I did learn that my Cancer Antigen number has increased significantly - this is a blood test that is done to kind of gauge if the chemo is working and killing off the cancer. It is done once a month and from last month, it did spike. Dr. Phillips is saying she does not use this solely in making decisions on moving to another drug. And my thought is considering I didn't get the right meds last month due to the insurance and hospital mishap, maybe it rose due to that and then previously being on a chemo that didn't work. So prayers please - this has to be the drug (if not we aren't done) and I need this number to go down. I also am asked for a monthly urine sample because one of the drugs can cause you to have protein in your urine. While I don't have that, they did find white blood cells in my urine so this hopefully means an infection. So adding another prescription to my night stand!
So in closing, I ask for prayers for my numbers to decrease, dad to get a job and for me to be typing about my third cancerversary next year.
Love Always,
Amber
Sunday, June 8, 2014
Sunday Funday
Happy Sunday! Not a lot to report. We have had a nice relaxing weekend at home. Friday after Justin"s soccer game Don and I went out to a friends family party. As much as I had to talk myself into going, it was nice to get out. Saturday was more soccer and then fun in the backyard sprinkler and basketball. Today was more outside creative fun which I hope is a sign of how the summer will go. Summer break officially starts at noon tomorrow! While Justin is excited, I am not quite sure I am....I just want him to be busy and have fun and I"m not always up for much these days. We do have him signed up for some camps so that will help. In fact the first one is a week from tomorrow. It is called Camp Hope. It is a camp for children who have a family member going through cancer. I have talked to one of the social workers and she said they do normal camp activities but then do break out sessions which include yoga, meditation and other ways for kids to handle the situation. I am hoping he meets some friends that will last a life time and that he will learn that while it is scary, he isn't alone. So wish us luck!
On the cancer front I am hanging in there. My treatment on Wednesday was uneventful, which I like. I did learn that my red blood cell count was just hanging out low, so since I was feeling sluggish, Dr. Phillips decided we would do a transfusion. So I went back on Thursday for 1 unit of blood. Usually I get 2 which takes close to 5 hours. With the 2 units, because of the Benadryl, I usually sleep through the first half and watch TV the second half. Well, they gave me the Benadryl and I was out. Out so much that I guess there was a fire alarm going off for a good 20 minutes and I didn't even stir....Good thing it wasn't real! The nurse basically woke me up 2 hours later and told me I could leave. I was a little upset that she disrupted my nap, but home is always better than the hospital. It did perk me up some, but again with the increase in pain meds, I find myself napping a lot.
This week will be my off week for chemo. I am ready to get back at it already as I am not a fan of off weeks. Plus because of the insurance issue, I really didn't have the right concoction this first round. So my pain is still pretty constant and the same. I was hoping it would decrease by now....So pray that I get through this off week and the pain doesn't get worse and nothing new pops up.
On my down time I am having a good time hanging with my dad and Whitney. I hope they find work soon, but I will miss them. We are also spending time looking at houses online and in person. Ryan is still going to daycare twice a week and as much as he cries when we drop him off, he has so much fun! Mom will be moving up after July 1st just in time for Jessica and her family to get here for a week. I know them being here will keep my spirits up. I just want my energy level to be up too so I can do fun things with them all.
Well, it is almost time for dinner and a movie. Even with a day left of school, it seems a good summer routine has started.....evening grilling and movies. Nothing like it.
Enjoy your week ad pray for me and everyone else going through a hard time.
Love,
Amber
On the cancer front I am hanging in there. My treatment on Wednesday was uneventful, which I like. I did learn that my red blood cell count was just hanging out low, so since I was feeling sluggish, Dr. Phillips decided we would do a transfusion. So I went back on Thursday for 1 unit of blood. Usually I get 2 which takes close to 5 hours. With the 2 units, because of the Benadryl, I usually sleep through the first half and watch TV the second half. Well, they gave me the Benadryl and I was out. Out so much that I guess there was a fire alarm going off for a good 20 minutes and I didn't even stir....Good thing it wasn't real! The nurse basically woke me up 2 hours later and told me I could leave. I was a little upset that she disrupted my nap, but home is always better than the hospital. It did perk me up some, but again with the increase in pain meds, I find myself napping a lot.
This week will be my off week for chemo. I am ready to get back at it already as I am not a fan of off weeks. Plus because of the insurance issue, I really didn't have the right concoction this first round. So my pain is still pretty constant and the same. I was hoping it would decrease by now....So pray that I get through this off week and the pain doesn't get worse and nothing new pops up.
On my down time I am having a good time hanging with my dad and Whitney. I hope they find work soon, but I will miss them. We are also spending time looking at houses online and in person. Ryan is still going to daycare twice a week and as much as he cries when we drop him off, he has so much fun! Mom will be moving up after July 1st just in time for Jessica and her family to get here for a week. I know them being here will keep my spirits up. I just want my energy level to be up too so I can do fun things with them all.
Well, it is almost time for dinner and a movie. Even with a day left of school, it seems a good summer routine has started.....evening grilling and movies. Nothing like it.
Enjoy your week ad pray for me and everyone else going through a hard time.
Love,
Amber
Friday, May 30, 2014
New Meds All Around
Thank you for those that have called or texted to check on me. I am as a matter of fact doing okay. Fell off the grid for a bit, but hopefully getting back on track. Like the saying "I fell off the wagon, but I'm back on." That is me. I didn't see it coming either. For as high as Don and I still were from the benefit, I really didn't see a bad time coming for awhile, but like cancer is unpredictable, so is my life I guess.
Last week I was to start my new chemo of Avistan and Abraxane. I knew I needed my fix as my pain was getting worse and worse. That is the one true sign that I am going by right now to say if the chemo is working since I (with my doctors okay) decided a scan is not something I want to go through at this time. So I was anxiously awaiting chemo and in the mean time was taking more pain meds than I wish to even discuss just to keep me going. I ranted a bit about it on Facebook, but because people abuse the use of pain pills, you unfortunately can not have your doctor call you in something any stronger than Norco. It has to be a paper prescription. So along with chemo I was anxiously awaiting seeing Dr. Phillips to get a prescription for a stronger pain medication. When I arrived at chemo on Wednesday, it was taking longer than usual to get my drugs. Finally Dr. Phillips came to chat about my pain and prescribed me a stronger pain medication. This was when I learned that my insurance had declined Avistan as a drug for them to give me. I was VERY upset and because the pain was so bad, I was not sleeping much so this was not the news I wanted to hear. The hospital had almost 3 weeks to work with my insurance to get this approved. Of course no one is going to take blame between the insurance and the hospital and it really didn't matter, all I knew was not getting a drug was not going to help the cancer or pain situation. I even asked if they could put it on my bill, but that was when I learned that this greedy drug manufacturer was going to charge $18,000 for 1 (ONE) treatment. I will take back the greedy comment if it works, but this is partially what is wrong with the cancer front….The astronomical amounts that the companies and the doctors can charge when you are 100% at their mercy. It is just so sad. Not to mention (again) not being able to get a darn pain medicine over the phone when I have no hair and would have gladly shown the pharmacy, police, FDA, whomever how much pain I was in to show I was not selling, sniffing or putting in someone Else's drink. Just doesn't make sense and is so unfair given my circumstances.
Okay I'm off my soap box….So Wednesday I received one drug and was sent on my way. Whitney graciously agreed to turn in my prescription to Walgreens that I have used for the past 2 years. We go home and an hour later Walgreens calls and says that they do not carry the number of pills I needed, but that they had contacted another Walgreens in the area and they do. I say great, so will they fill it? Nope, you will need to come here to pick up the prescription and provide an ID that matches who is on the prescription and take it to the other location. I am off my soap box, but just imagine what was going through my mind. So I do this and take to the next Walgreens only to be told, I must wait their hour to fill the prescription. Even though they are the same company as the one down the street, even though these are pills and have to be laying around in a locked room I'm assuming, I had to wait the hour….Again I'm breathing when I say I'm off my soap box, but cancer pain doesn't go away while you guys go through your silly formalities. So off I went for a milkshake and a stop at Walmart. Why not feed my pain with more pain of going to Walmart….
Home Wednesday night and I start my meds and I'm loving them. Unfortunately I woke up Thursday and had a very bad chemo hangover and was tired. I didn't know if I should contribute it to the new chemo, the new pain meds or my levels sinking into the tank. So I was left to just take medicine and sleep it off. I woke up Friday and mom had arrived but was feeling about the same. We were heading to Don and Wendy's lake house that evening for Memorial day weekend. Of course we left when the rest of Chicago was leaving and I took my pain medicine as scheduled but my pain started increasing rather than going away. It got so bad and I was so tense that my back cramped up and my toes were stuck curled up. I was crying hysterically so we turned around. This scared me so much. I am not a weeny in my opinion. I feel like I push myself more than some that have not gone through something nearly as close to what I have. So this was very unusual for me. Because it was after hours, I paged the Doctor on call. She advised me to take my original pain meds on top of my new meds and instructed if it was not gone in an hour, I was to go to the ER to get an IV of pain meds and (WAIT FOR IT) a prescription for a new pain medicine since they could not call in something different over the phone. So I did this and when we got home, Whitney massaged my back to get some of the tension out and eventually I relaxed enough to allow the pain medicine to work.
Saturday Don took the kids up to the lake and Whitney stayed home with me to watch over me since I was scared to death that I was going to over dose with the high amounts of pain meds the on call doctor wanted me to take over the weekend to stay pain free. Mom and dad had gone to visit their mothers. The quietness of the house was awesome. I did hallucinate one time that I recall and to me it is funny, but I would prefer not to do that again. Sunday was much of the same with relaxation add in a massage which completely helped my back and neck to feel better from being so tense. I have signed up for monthly massages just for that and to keep me in check. Something that used to be a luxury item for me has turned into a necessity.
Wednesday of this week I went back to the doctor and saw Dr. Phillips because it was decided with the on call Doctor from Friday night that I needed more of a long acting pain medicine rather than one that I need to take every 4 hours. So Dr. Phillips and I discussed and she completely agreed. She also hopes it will take away some of my anxiety. I do get anxious around the time of re-dosing because the pain is coming back but I try to make the 4 hour mark and not do them earlier. (I'm such a good patient) So she has put me on a 12 hour pill that I take 2 times a day. So far it has gone okay. I'm still needing to take some norco for small amounts of break through pain. It didn't help that when I went back Wednesday evening for chemo, even though I was not due for medicine, after leaving chemo I had a pain attack just like last Friday. Completely tense, couldn't find anything to help relieve my pain. So why they happen every so often can't be explained. I don't like that because I feel like I'm on guard at all times and scared it will happen again. I did receive both chemos on Thursday as the insurance decided it was necessary to cover the drug. (Applause) So far I feel good. I'm tired, but that again could be due to the pain meds, my low red blood cells (Dr. orders that I will need a transfusion probably by next week) or the chemo. All I know is I am getting the best help around here with dad and Whitney. My laundry is done, the kitchen is kept clean, dinners are prepared and the kids are shuttled around. I feel silly, but if it helps me regain my energy and have good times with the kids, that is what is important. When they move out and get jobs, I may be in trouble because I may forget how to do all of these things:) But they are awesome!
Please pray that this new chemo is doing its thing. Pray that my pain medicine will finally work to keep me out of pain. Pray that dad and Whitney find work. For dad so mom can get up here as we all miss her so much. For Whitney so she can begin her life as a big girl. Both have things in the works so I think your previous prayers and future prayers will get them to where they need to be! Oh and prayers that the house next door or across the street goes up for sale so my parents can buy it…..Kidding totally kidding! They will find something close so they are there when we need them. Just like Don and Wendy.
Love to all! Have a great weekend.
Amber
Last week I was to start my new chemo of Avistan and Abraxane. I knew I needed my fix as my pain was getting worse and worse. That is the one true sign that I am going by right now to say if the chemo is working since I (with my doctors okay) decided a scan is not something I want to go through at this time. So I was anxiously awaiting chemo and in the mean time was taking more pain meds than I wish to even discuss just to keep me going. I ranted a bit about it on Facebook, but because people abuse the use of pain pills, you unfortunately can not have your doctor call you in something any stronger than Norco. It has to be a paper prescription. So along with chemo I was anxiously awaiting seeing Dr. Phillips to get a prescription for a stronger pain medication. When I arrived at chemo on Wednesday, it was taking longer than usual to get my drugs. Finally Dr. Phillips came to chat about my pain and prescribed me a stronger pain medication. This was when I learned that my insurance had declined Avistan as a drug for them to give me. I was VERY upset and because the pain was so bad, I was not sleeping much so this was not the news I wanted to hear. The hospital had almost 3 weeks to work with my insurance to get this approved. Of course no one is going to take blame between the insurance and the hospital and it really didn't matter, all I knew was not getting a drug was not going to help the cancer or pain situation. I even asked if they could put it on my bill, but that was when I learned that this greedy drug manufacturer was going to charge $18,000 for 1 (ONE) treatment. I will take back the greedy comment if it works, but this is partially what is wrong with the cancer front….The astronomical amounts that the companies and the doctors can charge when you are 100% at their mercy. It is just so sad. Not to mention (again) not being able to get a darn pain medicine over the phone when I have no hair and would have gladly shown the pharmacy, police, FDA, whomever how much pain I was in to show I was not selling, sniffing or putting in someone Else's drink. Just doesn't make sense and is so unfair given my circumstances.
Okay I'm off my soap box….So Wednesday I received one drug and was sent on my way. Whitney graciously agreed to turn in my prescription to Walgreens that I have used for the past 2 years. We go home and an hour later Walgreens calls and says that they do not carry the number of pills I needed, but that they had contacted another Walgreens in the area and they do. I say great, so will they fill it? Nope, you will need to come here to pick up the prescription and provide an ID that matches who is on the prescription and take it to the other location. I am off my soap box, but just imagine what was going through my mind. So I do this and take to the next Walgreens only to be told, I must wait their hour to fill the prescription. Even though they are the same company as the one down the street, even though these are pills and have to be laying around in a locked room I'm assuming, I had to wait the hour….Again I'm breathing when I say I'm off my soap box, but cancer pain doesn't go away while you guys go through your silly formalities. So off I went for a milkshake and a stop at Walmart. Why not feed my pain with more pain of going to Walmart….
Home Wednesday night and I start my meds and I'm loving them. Unfortunately I woke up Thursday and had a very bad chemo hangover and was tired. I didn't know if I should contribute it to the new chemo, the new pain meds or my levels sinking into the tank. So I was left to just take medicine and sleep it off. I woke up Friday and mom had arrived but was feeling about the same. We were heading to Don and Wendy's lake house that evening for Memorial day weekend. Of course we left when the rest of Chicago was leaving and I took my pain medicine as scheduled but my pain started increasing rather than going away. It got so bad and I was so tense that my back cramped up and my toes were stuck curled up. I was crying hysterically so we turned around. This scared me so much. I am not a weeny in my opinion. I feel like I push myself more than some that have not gone through something nearly as close to what I have. So this was very unusual for me. Because it was after hours, I paged the Doctor on call. She advised me to take my original pain meds on top of my new meds and instructed if it was not gone in an hour, I was to go to the ER to get an IV of pain meds and (WAIT FOR IT) a prescription for a new pain medicine since they could not call in something different over the phone. So I did this and when we got home, Whitney massaged my back to get some of the tension out and eventually I relaxed enough to allow the pain medicine to work.
Saturday Don took the kids up to the lake and Whitney stayed home with me to watch over me since I was scared to death that I was going to over dose with the high amounts of pain meds the on call doctor wanted me to take over the weekend to stay pain free. Mom and dad had gone to visit their mothers. The quietness of the house was awesome. I did hallucinate one time that I recall and to me it is funny, but I would prefer not to do that again. Sunday was much of the same with relaxation add in a massage which completely helped my back and neck to feel better from being so tense. I have signed up for monthly massages just for that and to keep me in check. Something that used to be a luxury item for me has turned into a necessity.
Wednesday of this week I went back to the doctor and saw Dr. Phillips because it was decided with the on call Doctor from Friday night that I needed more of a long acting pain medicine rather than one that I need to take every 4 hours. So Dr. Phillips and I discussed and she completely agreed. She also hopes it will take away some of my anxiety. I do get anxious around the time of re-dosing because the pain is coming back but I try to make the 4 hour mark and not do them earlier. (I'm such a good patient) So she has put me on a 12 hour pill that I take 2 times a day. So far it has gone okay. I'm still needing to take some norco for small amounts of break through pain. It didn't help that when I went back Wednesday evening for chemo, even though I was not due for medicine, after leaving chemo I had a pain attack just like last Friday. Completely tense, couldn't find anything to help relieve my pain. So why they happen every so often can't be explained. I don't like that because I feel like I'm on guard at all times and scared it will happen again. I did receive both chemos on Thursday as the insurance decided it was necessary to cover the drug. (Applause) So far I feel good. I'm tired, but that again could be due to the pain meds, my low red blood cells (Dr. orders that I will need a transfusion probably by next week) or the chemo. All I know is I am getting the best help around here with dad and Whitney. My laundry is done, the kitchen is kept clean, dinners are prepared and the kids are shuttled around. I feel silly, but if it helps me regain my energy and have good times with the kids, that is what is important. When they move out and get jobs, I may be in trouble because I may forget how to do all of these things:) But they are awesome!
Please pray that this new chemo is doing its thing. Pray that my pain medicine will finally work to keep me out of pain. Pray that dad and Whitney find work. For dad so mom can get up here as we all miss her so much. For Whitney so she can begin her life as a big girl. Both have things in the works so I think your previous prayers and future prayers will get them to where they need to be! Oh and prayers that the house next door or across the street goes up for sale so my parents can buy it…..Kidding totally kidding! They will find something close so they are there when we need them. Just like Don and Wendy.
Love to all! Have a great weekend.
Amber
Friday, May 16, 2014
Home Sweet Home
Well, it is official, Whitney Garrison has graduated from University of North Carolina Asheville. We had a great weekend away in the mountains and seeing some good spots in Asheville before Whitney moved. Don came home on Sunday morning and I stayed another day to celebrate mothers day with my mom and drive the moving truck with Whitney's stuff back up on Monday with dad. Dad and I made the most of the 10 hour drive home. I can not complain about the drive one bit. Although I did not drive so he may see things differently. I was able to get a couple naps in and make a pit stop in Columbus IN to see my Uncle Rich and aunt Tam's "new" house. They have lived there for 6 years so I guess what may not be new to them, but new to me. Beautiful home on the lake. They surprised dad and I with a baby! Yes, a baby….my cousin Jill was there with her daughter Quinn who is 2 months. Beautiful surprise! It was sad to learn at the benefit that my aunt Tam's father was diagnosed with cancer. We received an update on him and it seems he is handling his chemo like a champ! So good to hear. Cancer at any age does not come welcoming. So do me a favor and please add my aunt Tam, her father and her family to your prayers.
While away, Don and I learned that his Uncle Ron passed away. This was sad news to learn because we just saw him at the benefit volunteering. He has 3 grown children and 4 grandchildren. His services were held Tuesday and Wednesday. It was a beautiful service. So another prayer request for the Pondelicek family. Especially Ronnie Jr and Kathy, Brian, Trish, Sean and Molly and Adam, Kristi, Jeremy and Zoey. And also Uncle Ron's brothers and sisters and mom.
On the cancer front, this is my off week. Last week I received my chemo but also spoke to Dr. Phillips. I could tell my nagging pain was coming back in between my regular pain pill time. It was becoming worse and worse and I was also noticing some new red spots on my chest wall. This told me that the chemo I currently am on was probably no longer working. So I made the brave decision to call out the cancer this time rather than it calling me out. What I mean by that is I was scheduled to have a repeat PET scan to see if this drug was working before moving on. But after the uplifting benefit, I decided I was not going to let a chemo regimen that decided to fail bring me down by getting a scan and learning of a possible new location that the cancer had set up shop. Rather I asked Dr. Phillips if we could just move on without a scan. See my chemo treatment does not change whether the cancer stays put or travels to an organ or new nodes so my new opinion is, what I don't know can't hurt me. I know to some this sounds like a small victory, but for me, it was huge. Hearing we have to move on makes you feel like things are out of your control. For me to make the decision and basically come to terms with it rather than being told by someone else, is my small way to feel in control and to feel in control to me meant not losing any of my high from the weekend of the benefit. So there you go! I also feel that sometimes knowing or hearing something makes me anxious and that feeling is hard to shake. For example, when I fell playing soccer a few weeks back, I fell on my hip that has a spot that has not been ruled as cancer but has also not been ruled out. So I limped for a week and told myself that this was it, it probably is the cancer blah blah blah. Well, a week later, my hip does not hurt and I am not limping. See? See what a scan does to me? I just would rather not know right now since my treatment plan stays the same.
So new chemo starts next Wednesday. I will be doing 2 drugs for 3 weeks and the 4th week off. Week 1 I receive both drugs. Week 2 I receive 1 drug and week 3 I receive both drugs again and week 4 is a week of rest. I am told I should be able to tolerate these drugs about the same as the other drugs. No new side effects that seem too scary for me. The drugs are called Avistan and Abraxane.
So wish us luck! Have a great weekend!
Amber
While away, Don and I learned that his Uncle Ron passed away. This was sad news to learn because we just saw him at the benefit volunteering. He has 3 grown children and 4 grandchildren. His services were held Tuesday and Wednesday. It was a beautiful service. So another prayer request for the Pondelicek family. Especially Ronnie Jr and Kathy, Brian, Trish, Sean and Molly and Adam, Kristi, Jeremy and Zoey. And also Uncle Ron's brothers and sisters and mom.
On the cancer front, this is my off week. Last week I received my chemo but also spoke to Dr. Phillips. I could tell my nagging pain was coming back in between my regular pain pill time. It was becoming worse and worse and I was also noticing some new red spots on my chest wall. This told me that the chemo I currently am on was probably no longer working. So I made the brave decision to call out the cancer this time rather than it calling me out. What I mean by that is I was scheduled to have a repeat PET scan to see if this drug was working before moving on. But after the uplifting benefit, I decided I was not going to let a chemo regimen that decided to fail bring me down by getting a scan and learning of a possible new location that the cancer had set up shop. Rather I asked Dr. Phillips if we could just move on without a scan. See my chemo treatment does not change whether the cancer stays put or travels to an organ or new nodes so my new opinion is, what I don't know can't hurt me. I know to some this sounds like a small victory, but for me, it was huge. Hearing we have to move on makes you feel like things are out of your control. For me to make the decision and basically come to terms with it rather than being told by someone else, is my small way to feel in control and to feel in control to me meant not losing any of my high from the weekend of the benefit. So there you go! I also feel that sometimes knowing or hearing something makes me anxious and that feeling is hard to shake. For example, when I fell playing soccer a few weeks back, I fell on my hip that has a spot that has not been ruled as cancer but has also not been ruled out. So I limped for a week and told myself that this was it, it probably is the cancer blah blah blah. Well, a week later, my hip does not hurt and I am not limping. See? See what a scan does to me? I just would rather not know right now since my treatment plan stays the same.
So new chemo starts next Wednesday. I will be doing 2 drugs for 3 weeks and the 4th week off. Week 1 I receive both drugs. Week 2 I receive 1 drug and week 3 I receive both drugs again and week 4 is a week of rest. I am told I should be able to tolerate these drugs about the same as the other drugs. No new side effects that seem too scary for me. The drugs are called Avistan and Abraxane.
So wish us luck! Have a great weekend!
Amber
Tuesday, May 6, 2014
Cancer Can Kiss It
I have been thinking a lot of what I want to say about the wonderful benefit and I still feel like I am at a loss for words. It was so overwhelming (in a great way) and there are so many beautiful faces that were behind it that I just don't know that my words in my blog could describe how Don and I feel. I can not say enough how much our friends and family that put this together mean to us. We knew they cared deeply about us, but what they put together (again very little experience in this field) was amazing! We will never forget this day! And to those of you that attended (746 people was the final count I'm told) we thank you so much. We know the band and the atmosphere was awesome, but you came for us. You came because some how somewhere you have heard our story and wanted to show support. My God!!!!! We love you all! And the generous donations we received was out of this world! So generous and so genuine. We can't wait to pay it forward and we already have some things in the works. I did not get much time with any one particular person on Sunday, it was so busy, so I apologize if we didn't speak or if our conversation was cut short. I told Dan and Joe (The master minds behind the benefit) that I felt like I was a Kardashian or something. I even talked to people through the stalls in the bathroom! It was a great problem to have so I am not complaining and I know you all understand if we didn't get much time together. We are still on such a high from the event.
Please stay in touch with us as we continue our journey. The benefit has given us the strength and the courage to keep reaching. We are not at the end of any roads and we feel like we now can not see any end. This is because on Sunday there was such a feeling of love and of God in the room. I know I am not healed, but I do know that I have at least 746 people praying and pulling for me. And I know more, because several have reached out to me that could not make it. Several have sent cards of encouragement. We feel it, and the Lord works in mysterious ways and I do not think he is done with me here!
Chemo tomorrow before Don and I leave Thursday night to see Whitney graduate from the University of North Carolina Asheville. We can not wait to hear her named call. She is our angel on earth. She gave up a semester at school and put her social life on hold to take care of us and our children when I was first diagnosed. I know the saying, you will do anything for family, but this was a courageous thing for a young women to do when we all know how important college is but also how important our social lives are when you are in college. I hope and pray that she gets the best job she could dream of. She deserves only the best! She is beyond amazing!
I have included a video of my speech from Sunday since there was a lot of my family that could not attend because of the distance. So I hope it will download and you can enjoy it. If you can't, I will try to find a way to get it to you.
We love you all! Keep up the prayers and the support!
Please go to the following address to view the speech: https://www.youtube.com/watch?v=0y6rXTcKQdk&feature=youtu.be
https://www.youtube.com/watch?v=0y6rXTcKQdk&feature=youtu.be
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