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
Friday, May 30, 2014
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
Saturday, April 19, 2014
Busy Week
Good Afternoon!
What an eventful week for the Naughton family! Well, as eventful as Lisa visiting, grandparents day, fundraising, chemo, egg decorating and blood transfusions go!
Wednesday was an eventful day for me as Lisa came up to visit. She cuddled and played with Kaner all day. (yes we still have the puppy) It was great to catch up with her. We text all the time, but her busy graphic design company (longfellowdesign on Facebook) and my busy schedule of chemo keep us apart far to often. Wednesday was also grandparents day at Justin's school. Nana and Papa Naughton both joined Justin for a fun game of bingo and then went to his classroom for more fun and games. We ended the night with Justin's final basketball practice.
Thursday I was privileged to have our good friends Al and Jill join me for chemo. They were so fun to have there to talk to and keep my mind busy. Chemo starts every time with blood work to make sure my levels are okay for treatment. This week was a little different because they put me in a room that had a GIANT chair….Don't believe me, check out the pictures! Quickly after my blood work one of the lab workers came to the room and showed my nurse some reports and I knew then I was in trouble for something. Come to find out my red blood cell levels were low. My nurse explained this is probably from the previous chemo drug since your red blood cells don't mature and die off (I may not be saying this right) for 90 days. So I was quick to point out that this is not my fault since my last blood transfusion was 90 days or fewer ago. So in fact it was that poor donors blood that caused me to have low levels and not Amber! The good news was I was still able to get chemo, it just meant that I would need to return on Friday for a blood transfusion. Chemo went well and following that Al and Jill took me out for lunch. It was great to just catch up with them and talk about something other than what is going on with cancer.
Thursday evening was spectacular!! With our friends helping arrange for donations for the benefit on May 4th, our friends Dan and Michele were cool enough to get a local restaurant to set up a fundraiser Thursday evening where 10% of every bill was donated to us. Don and I went with the kids. Earlier in the week the New Lenox newspaper came out and interviewed me about my cancer story and the upcoming benefit. They wanted to get some pictures at Gatto's Thursday night so we attended to eat, take pictures and visit with friends and family. Following dinner our great family and friends stayed and had a follow up meeting for the upcoming benefit.
Friday I reported to my infusion chair at 11:00. I received 2 pints of blood which takes about 4 1/2 hours. The first half I slept through but eventually woke up and was pretty bored and I have decided I am not a fan of TLC's "Say Yes to the Dress". Horrible show! After my transfusion I had to head to the cancer center for my shot to help boost my levels and then off to Target to get some last minute Easter treats:) Nana and Papa Naughton kept the kids last night so Don and I rented Wolves of Wall Street and I stayed up for the entire movie!
Today was soccer and resting. It is gorgeous outside so we all went to soccer practice and Ryan met some friends at the park right by the soccer field. Justin was excited to get his soccer jersey. He is #4! His team is the Panthers and he is so far really enjoying it! Games will start at the end of the month. Easter Sunday tomorrow at the Naughton's house with the Goodnights and Marrone's (My sister in laws mom and dad and sister and husband) It looks like another nice day so hopefully we can spend the day outside.
This week is Justin's spring break. He is booking up fast which is awesome! I am treatment free this coming week. Just an appointment on Thursday for a check up. I am looking forward to spending some time with Justin while he is off school and hopefully having some extra energy since I received some good blood yesterday!
Happy Easter!
Amber
P.S. If you live in New Lenox, don't forget to check out the New Lenox Patriot on Wednesday! Also, if you haven't already done so and plan to go to the benefit on May 4th, please do your best to purchase your tickets in advance. My friends and family planning this are trying to be as accurate as possible when giving a head count to Bourban Street. Also to ensure there are plenty of volunteers to work the event the day of. It will be the best event in 2014 so you don't want to miss out!!
What an eventful week for the Naughton family! Well, as eventful as Lisa visiting, grandparents day, fundraising, chemo, egg decorating and blood transfusions go!
Wednesday was an eventful day for me as Lisa came up to visit. She cuddled and played with Kaner all day. (yes we still have the puppy) It was great to catch up with her. We text all the time, but her busy graphic design company (longfellowdesign on Facebook) and my busy schedule of chemo keep us apart far to often. Wednesday was also grandparents day at Justin's school. Nana and Papa Naughton both joined Justin for a fun game of bingo and then went to his classroom for more fun and games. We ended the night with Justin's final basketball practice.
Thursday I was privileged to have our good friends Al and Jill join me for chemo. They were so fun to have there to talk to and keep my mind busy. Chemo starts every time with blood work to make sure my levels are okay for treatment. This week was a little different because they put me in a room that had a GIANT chair….Don't believe me, check out the pictures! Quickly after my blood work one of the lab workers came to the room and showed my nurse some reports and I knew then I was in trouble for something. Come to find out my red blood cell levels were low. My nurse explained this is probably from the previous chemo drug since your red blood cells don't mature and die off (I may not be saying this right) for 90 days. So I was quick to point out that this is not my fault since my last blood transfusion was 90 days or fewer ago. So in fact it was that poor donors blood that caused me to have low levels and not Amber! The good news was I was still able to get chemo, it just meant that I would need to return on Friday for a blood transfusion. Chemo went well and following that Al and Jill took me out for lunch. It was great to just catch up with them and talk about something other than what is going on with cancer.
Friday I reported to my infusion chair at 11:00. I received 2 pints of blood which takes about 4 1/2 hours. The first half I slept through but eventually woke up and was pretty bored and I have decided I am not a fan of TLC's "Say Yes to the Dress". Horrible show! After my transfusion I had to head to the cancer center for my shot to help boost my levels and then off to Target to get some last minute Easter treats:) Nana and Papa Naughton kept the kids last night so Don and I rented Wolves of Wall Street and I stayed up for the entire movie!
Today was soccer and resting. It is gorgeous outside so we all went to soccer practice and Ryan met some friends at the park right by the soccer field. Justin was excited to get his soccer jersey. He is #4! His team is the Panthers and he is so far really enjoying it! Games will start at the end of the month. Easter Sunday tomorrow at the Naughton's house with the Goodnights and Marrone's (My sister in laws mom and dad and sister and husband) It looks like another nice day so hopefully we can spend the day outside.
This week is Justin's spring break. He is booking up fast which is awesome! I am treatment free this coming week. Just an appointment on Thursday for a check up. I am looking forward to spending some time with Justin while he is off school and hopefully having some extra energy since I received some good blood yesterday!
Happy Easter!
Amber
P.S. If you live in New Lenox, don't forget to check out the New Lenox Patriot on Wednesday! Also, if you haven't already done so and plan to go to the benefit on May 4th, please do your best to purchase your tickets in advance. My friends and family planning this are trying to be as accurate as possible when giving a head count to Bourban Street. Also to ensure there are plenty of volunteers to work the event the day of. It will be the best event in 2014 so you don't want to miss out!!
Thursday, April 10, 2014
www.cancercankissit.org
I started round 2 cycle 1 of chemo this morning. My levels rebounded wonderfully with the help of a shot after my last round so there were no problems to report. Just hoping to relax and stay ahead of the fatigue. So prayers for that are appreciated.
Since I don't have much other news, I thought I would use this blog entry to plug the upcoming benefit being held for Don and I on May 4th. Our friends are going crazy posting fliers. I am entertained by friends sending me pictures of myself in a lot of bar establishments some that I used to frequent and others that I have not heard of. Our friends and family are working like crazy to get the word out about this event. They are also coming together with several restaurants, spas, golf courses, etc to get awesome raffle give aways the day of the event. On top of the raffles, there is also a silent auction that will be held for items such as 2 condos in Florida and a house rental in Michigan. Oh and BIG SCREEN TV's. If this isn't enough to make you want to attend, I don't know what is.
Kids and adult are welcome on May 4th. There will be several events for kids to partake in and our favorite local band is playing "The Walk-ins". Not only are they the best band, Our friend and Ryan's Godfather is the lead singer! (We were not paid to say this, they really are THAT GOOD!) Check out their website at www.thewalkins.com. Also the ticket price includes beer and wine and a buffet. Please go to the website www.cancercankissit.org to get your tickets today.
The website set up for the benefit talks about what the money will go towards, but to personalize it some, I thought I would share for you here as well. Don is fortunate enough to work for a great company that offers health benefits, but like anybody with benefits, there usually is a deductible that you are required to pay out of pocket before insurance will cover 100%. 2 years ago, I would not have known what my deductible was nor did I really care about my health benefits. Just so long as I carried my card in my wallet and took it with me to my once in a blue moon appointment, I was just fine! I paid my piddly co-pay and went on my way. After being diagnosed last year, we started to see what 1 round of chemotherapy could cost. Last year my insurance paid approx $300K for my chemo and surgery. This year being on now 3 different types of chemotherapy, Don and I have reached our deductible and in fact, we did so in early March. Insurance will now pay 100%, but our portion is not a few pennies. We are paying what we can and going along our way, but we get that me having Stage 4 cancer, when January rolls around, we will be expected to meet the dreaded deductible again. So even if we could pay off this year, this is going to be a yearly expense.
Along with insurance, we have also decided to enroll Ryan in day care a couple days a week not only for him to build strong social skills, but also because with this chemo, I have days of severe fatigue. Being a one income family now, we are watching our money more closely and if I were not ill, he would not be attending daycare. So this will help ease the financial burden of him being there and should we need to increase the number of days he attends, we can feel like we can do that.
Lastly it will help Don and I should we decide we need to travel somewhere for another opinion. Last week I went to NC for an appointment and it was a rather cheap trip considering my parents had miles for me to fly and they paid for our hotel room. Unfortunately we do not know someone in all 50 states and nor will I expect my parents to front the bill. So money raised can be used for travel and hotel accommodations. As I mentioned Dr. Carey at Chapel Hill gave me a few trials that I may qualify for, but none are local. The closest one they found was in Ohio at this time. So while I am not going on this trial, it shows that in the future a trial may require me to travel.
So in a nutshell, that is what we are up against. We are so appreciative for all that have donated and would LOVE LOVE LOVE to see as many of you there as possible on May 4. Don and I have the most supportive network and not only would I love to see all of you, I want our family and friends that have been working so hard towards this benefit to see it pay off. So if you can, go on the above website and purchase your tickets in advance and come out that Sunday to see friends, family and US!!!
We love you all!
Amber
Since I don't have much other news, I thought I would use this blog entry to plug the upcoming benefit being held for Don and I on May 4th. Our friends are going crazy posting fliers. I am entertained by friends sending me pictures of myself in a lot of bar establishments some that I used to frequent and others that I have not heard of. Our friends and family are working like crazy to get the word out about this event. They are also coming together with several restaurants, spas, golf courses, etc to get awesome raffle give aways the day of the event. On top of the raffles, there is also a silent auction that will be held for items such as 2 condos in Florida and a house rental in Michigan. Oh and BIG SCREEN TV's. If this isn't enough to make you want to attend, I don't know what is.
Kids and adult are welcome on May 4th. There will be several events for kids to partake in and our favorite local band is playing "The Walk-ins". Not only are they the best band, Our friend and Ryan's Godfather is the lead singer! (We were not paid to say this, they really are THAT GOOD!) Check out their website at www.thewalkins.com. Also the ticket price includes beer and wine and a buffet. Please go to the website www.cancercankissit.org to get your tickets today.
The website set up for the benefit talks about what the money will go towards, but to personalize it some, I thought I would share for you here as well. Don is fortunate enough to work for a great company that offers health benefits, but like anybody with benefits, there usually is a deductible that you are required to pay out of pocket before insurance will cover 100%. 2 years ago, I would not have known what my deductible was nor did I really care about my health benefits. Just so long as I carried my card in my wallet and took it with me to my once in a blue moon appointment, I was just fine! I paid my piddly co-pay and went on my way. After being diagnosed last year, we started to see what 1 round of chemotherapy could cost. Last year my insurance paid approx $300K for my chemo and surgery. This year being on now 3 different types of chemotherapy, Don and I have reached our deductible and in fact, we did so in early March. Insurance will now pay 100%, but our portion is not a few pennies. We are paying what we can and going along our way, but we get that me having Stage 4 cancer, when January rolls around, we will be expected to meet the dreaded deductible again. So even if we could pay off this year, this is going to be a yearly expense.
Along with insurance, we have also decided to enroll Ryan in day care a couple days a week not only for him to build strong social skills, but also because with this chemo, I have days of severe fatigue. Being a one income family now, we are watching our money more closely and if I were not ill, he would not be attending daycare. So this will help ease the financial burden of him being there and should we need to increase the number of days he attends, we can feel like we can do that.
Lastly it will help Don and I should we decide we need to travel somewhere for another opinion. Last week I went to NC for an appointment and it was a rather cheap trip considering my parents had miles for me to fly and they paid for our hotel room. Unfortunately we do not know someone in all 50 states and nor will I expect my parents to front the bill. So money raised can be used for travel and hotel accommodations. As I mentioned Dr. Carey at Chapel Hill gave me a few trials that I may qualify for, but none are local. The closest one they found was in Ohio at this time. So while I am not going on this trial, it shows that in the future a trial may require me to travel.
So in a nutshell, that is what we are up against. We are so appreciative for all that have donated and would LOVE LOVE LOVE to see as many of you there as possible on May 4. Don and I have the most supportive network and not only would I love to see all of you, I want our family and friends that have been working so hard towards this benefit to see it pay off. So if you can, go on the above website and purchase your tickets in advance and come out that Sunday to see friends, family and US!!!
We love you all!
Amber
Thursday, April 3, 2014
NC Trip
Wow, you all know how to make a girl feel special on her birthday. Whomever thought of the perfect idea of sending me cards on my birthday, you are AWESOME! So unexpected! They keep coming in and I don't know what I am going to do when I go back to the mailbox and only find the bills and junk mail! What a great idea! Thank you to the card fairy who remains anonymous at this point! My birthday was super! Don woke us up before he left for work and we had donuts, mine with candles. After Justin was off to school and Wendy came to take Ryan to his 2 year well check -Just another small thing that a cancer patient shouldn't do since it involves going in to a facility that has more germs than those found on an elevator button I'm sure, I left for the airport. My flight was on time, I popped an Ativin before take off and slept like a baby the entire way there. Once landed, the plan was for me to take the hotel shuttle over to the hotel and meet mom and dad there. Small mishap on my part, after checking the confirmation for the hotel over and over to ensure I got on the right shuttle, I got on the wrong one. But funny thing is, traveling without hair has some perks. The nice gentleman was kind enough to bring me to his competitors location. Yeah, I felt bad about it, but I'm sure it happens all the time. Mom and Dad arrived shortly after I did and we headed to Sullivans Steak House in Raleigh. Great service and great food! Mom and I had steaks and dad the fish. After dinner, they came with a HUGE piece of strawberry cheesecake with candles. BONUS-I got to make yet another birthday wish! One will never tell what the wishes were:) We really didn't plan to have cheesecake because Whitney had ordered 3 special cup cakes for us to share. Oh well, you live once right?
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| Naughton Birthday dinner |
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| My cards:) |
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| Garrison Birthday dinner |
Wednesday morning we were not in a big hurry to get up and get going since my appointment was not until 11:00. So we slept in and then the 3 of us passed around the 3 different flavored cupcakes. Breakfast of champions, but we couldn't let them go to waste and it was my birthday!! We left and headed to the Chapel Hill Cancer Center around 10:00. It was great to have mom and dad with me for the day. Them living away, they hear the details of my appointments, but I know how badly they want to be there. First stop was registration. That went smoothly and we were escorted to the waiting room. The staff was more than helpful and friendly. Some also reminded me what good hands I was in with Dr. Carey so that made us feel good. We were informed that Dr. Carey was running a bit behind and that update helped us since I had planned to fly back that day. When we were put in a room, there was a nice couch in the room for me and my parents to fit nicely and still they kept us updated on the delay and offered us food and water. So this facility is top notch - not many places have nurses that double as waitresses.
First I met with a nurse practitioner who was probably about my age. She came in with my book of previous Dr. notes and orders. She had 2 pieces of paper and asked that I bare with her as she went over everything. I was so impressed that she had everything right! They had only received my entire file the Friday before so she really did her homework. Side note - remember my trip to NY about a year ago when I showed interest in a trial. I was only expecting a nightmare like that so even if she missed something, I didn't notice. She impressed us all. So back to yesterday, she mentioned to me that they had discussed my case at their board meeting that morning and wanted to know if I could stick around yesterday to also meet with a geneticist. I was so impressed that they cared so much about my case to talk about me at their meeting that I would have stayed a week if they asked. So at that point, we pushed my flight back (another topic for another day if US and AA don't get their act together and respond to my e-mail).
Next Dr. Carey came in and returned with the nurse practitioner who seconded as a court reporter as she typed pretty much word for word the conversation between Dr. Carey and me and my parents. She did an exam and then had me get dressed so we could talk. Dr. Carey first explained the tough part that I hate hearing which is: We are not looking to cure me, we are looking at finding the right drugs to keep this disease from spreading any further. Yes, that sucks, but it was not anything we didn't know. I explained to Dr. Carey that I am looking to live as long as I can, but also be able to have a good quality of life. I did tell her if there was a drug that I could take while sitting in the hospital on my death bed for 2 months, I would take it if I would be cured, but if not, I am looking for good quality of life and to live as long as possible. She agreed with that, that I am on the right drug for now. She also went over drugs she would recommend down the road should this one stop working. She also talked with us in regards to a few trials. None of which I could participate in through University of Chicago at this time, but since we just started this drug, she didn't recommend we stop this drug and move to a trial at this point. Also since I visited there, she will keep me in mind should they start any trials in the future that I may be eligible for. Next she asked me about Justin. I explained to her that we are very open with him and she was happy about that. She did inform us that sometimes a child can think they caused this to happen so we have to continue to make sure we answer his questions and let him in on as much as he needs or asks.
Her next question was me and Don. I informed her we are hanging in there, but times are tough. We are stressed to the max and neither of us are good about asking for help. We would rather be the ones giving than receiving. She did a good job beating on me (in a way that I could handle it) to let me know that we have to take this help in order for me to fight cancer. I agreed and my goal is to try harder at taking you all up on dinners, help with the kids, etc. I'm going to say this in a way that hopefully does not come off harsh. There are times I am not up for company, I either do not feel good, I'm sad, I don't want to talk, I just want to lay in sweat pants on the couch, my excuses for blocking you out go on and on. It is in no way a reflection of you. It is just that. And while most of you have kids my kids age and it is great to get the kids together, having kids in the house sometimes adds to my anxiety about germs, about craziness that kids cause and well….it is just overwhelming. So no, this is not my way of saying you aren't invited, it is just overwhelming when someone says "Can I bring dinner". Because my mind blows it up into something it probably isn't - my mind says it turns into a full day of entertaining you and providing fun and games for your kids and mine and staying awake and entertaining when deep down, I know that is not what it is, but damn it, cancer is overwhelming!!! So please don't give up on us. Don is always up for company and I know I suck so don't blame him, blame me! So that was that, I am not super woman and I will stop trying to be. We enjoy any pasta, Mexican, casserole, etc or take out:)
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| Outside the cancer center before appointment |
Sorry if this is post seems long, it is not even close to being over. I added another picture so you could grab some water and take a look at my cool new hair. By the way, Dr. Carey complemented my well shaped melon. Okay, back to the story: Next she asked what questions I have and I asked her about diet and exercise. I told her I have read all about how sugar feeds the cancer and she interrupted me and quickly said "Who told you that, Dr. Nanda? Dr. Phillips? Dr. Hantel?, I certainly didn't tell you that". I thought this was funny because while she was being a smart you know what, it was so nice to finally hear someone say to not go hog wild, but stop beating myself up about what food I ingest when sometimes a nice Pepsi and a bagel sounds better than a freshly juiced glass of Kale, Carrots and a small amount of fruit since fruit has natural sugar in it. So I will still watch my diet, but I won't try to follow it so closely that I sometimes think after a cheeseburger that I can feel the cancer growing while it is being ingested. Again I will mention that cancer is over whelming!
So long story short, her goal and mine is to stop taking blame for this cancer. I did not cause it to happen, I am doing everything I can to fight it, I am seeing every specialist possible to stay in charge and whether the cancer stays in my lymph nodes or travels further, I am not expiring anytime soon.
Following her visit I met with what I will call Genetic engineer #1. She came in and went over a lot of what the genetic counselor from Edwards did a year ago when we did the BRAC testing. (I was negative which means no one in my family is at a higher risk of developing cancer) After going over my healthy family history she didn't recommend any further genetic tests, but didn't want to cross that off without having her colleague come in and give his opinion (Again, we received the red carpet and felt so loved and important) Next Genetic engineer #2 came in and spoke with us and after speaking he too agreed no further testing is necessary, but wants me to follow up with him via email if anything were to pop up or in a year in case something new on their end is discovered.
The last step was meeting with a clinical coordinator in regards to a test (pardon me, I forget the name) that would take a sample of my tumor and a sample of my blood and have my genetic make up reviewed to see if it can pin point any targeted therapies that might work for me. The bad news with this is, they are usually only 5% successful in finding a targeted therapy with this test. But since it is a trial, it will not be charged to my insurance company and since I have had my tumor checked for 2 different things that it has failed to suppress, maybe this is the 1 thing that will give us some good news. I mean, enough bad news is enough so maybe just maybe this is it! This test can take 3-4 months for results so stay tuned!
After this, we were 5 hours in. So off to get some food and to the airport we went. It was a great visit with my parents. While we shared tons of tears, we also shared tons of laughter and like I said 12 pages back, it was great to have them tag along and witness first hand what Don and I go through almost weekly. So kudos to them! So home sweet home. Back to see Dr. Phillips tomorrow for a check up. I am expecting blood work and probably just a quick check up. Scans will be done after 2 more cycles. I feel good as far as my energy. Pain was minimized some, but today has been giving me trouble. I'm chalking it up to traveling since these past few weeks I have almost felt a lift on the pain front.
Lastly, those on Facebook have probably seen this site called "www.cancercankissit.org". This is a website and benefit that is being put on by friends and family of Don and I. We are completely amazed at our family and friends around here. Again, we hate to ask for help, but we get everyone loves us and everyone wants to help. So this wonderful benefit will be held on May 4. Please check out the website and if you can make it, we would love to see you there. Looks like tons of entertainment, games, drinks, raffles and donated items to bid on or buy. We would love to see you there. If you have questions in regards to it, please see the flyer for people to contact or you can reach out to Don or I and we can get you to the right people.
Thank you for the continued prayers and support. We can feel it, keep them coming!
Lots of Love,
Amber
Monday, March 24, 2014
Update and Prayer Request
Well I have been putting off my blog for a couple of reasons. One, I'm exhausted and two, I really don't know how to put into words how I am feeling. My PET scan was Tuesday and while I was not overly confident, I was not letting it bother me. It could have been because I was still feeling a bit exhausted from my previous chemo round and that my parents were here and we were busy researching some fun things that did not involve cancer. It is still a family secret I believe so I can not disclose our research at this time:) If you know already, consider yourself special!!
Thursday we unfortunately did not receive the news we were hoping for. After only 3 cycles of on this trial, we learned that this stupid cancer decided to set up shop in a new lymph node in my lung / chest wall. I had wondered if there was something going on as I was having some pain in this area, but from the previous scan knowing there was already a node close to there, it made sense to believe it was the chemo knocking out that cancerous node. Nope, that wasn't what it was. It was very emotional for Don and I to find this out. Dr. Phillips gave us the news and informed me I was no longer eligible for the trial since I had progression in a new spot. At first I stared at her and waited for her to say something positive, when that didn't happen, I broke down. Dr. Phillips is so sweet and as I mentioned before, I believe we are about the same age, so I know this is not easy for her to give this news to us. After she rubbed my back for awhile, she decided to give Don and I some time alone. After what seemed like forever of me crying, she returned and we went over the next options. She had already consulted with a few other doctors including Northwestern and they all felt the next drug of choice was Eribulin. It is given for 2 weeks on and 1 week off - same as what the trial was. We will do 3 rounds (9 weeks) and then repeat a scan to ensure we are on the right path. I was anxious to start and Dr. Phillips was able to get our insurance on the phone and approved and we went off to the infusion lab for my first treatment.
My parents were anxiously waiting in the waiting room. I think they too were hoping for some reassuring news that the current drug was working. I was able to text a few words to my mom to prepare them since my eyes were about welted shut from crying. On the way to the infusion lab a few nurses stopped to hug me. It makes me feel good that the entire team at the University of Chicago is rooting for me and when I get good news, they are happy and when I don't, they are there for me to give me a nice hug. I think it was also nice for my parents to see what good hands I am in. I hope soon we can all high five, fist bump, hug, and cry tears of happiness. I am due I believe. This new infusion is very fast. It takes longer to get my blood levels than the treatment. The treatment takes 10 minutes. I was a little let down with this - I do enjoy my Benadryl induced coma. Oh well, after treatment I was able to crawl into bed and sleep the afternoon away while mom and dad tended to the kids.
Don and I have decided at this point, we need more confidence that we are on the right path. As I told Dr. Phillips, I feel like we are picking these drugs off way too fast and every time I get a scan I learn how much closer I am to death rather than how much closer we are to recovery. She has reassured me that we have more to go, but we have decided that it is time for a 2nd opinion. Back in January when I started the trial, I had reached out to Dr. Lisa Carey through Chapel Hill, NC. She is listed on-line as a triple negative guru. At that time, we e-mailed back and forth and she agreed with the trial and knew Dr. Nanda (Dr. Phillip's boss) At that point we were comfortable, but now that we are on to the next drug, I think it is good to get in front of her and have her look at me and review all of my scans and prior treatments. I was able to get in with her on April 2nd. I will fly out on my birthday (April 1st) and my parents will meet me there to take me to a nice dinner. We will stay at a hotel and then go to my appointment the next day and then I will fly home. It will be a quick trip, but I'm really looking for more reassurance or another option for treatment. The hope is they all agree, but if not, she can hopefully concoct a plan and have Dr. Phillips treat me here for it.
Since a lot have asked (I'm grateful for your questions because it shows how much you are truly invested in my recovery and well being) Why don't they know what to give me. It is not easy to explain, but here I will try. Triple negative means the cancer is not hormonal. Because it is not hormone related, there is not a set treatment. Triple Negative patients are grouped under one huge umbrella of "We don't know yet what to do with you so sit tight". Not funny, it is true. There are probably several different forms of triple negative, but science has not yet been able to detect each one so that is why we are just throwing things at this cancer and hoping me get a bulls eye. It is super aggravating as a patient and I know it is for you too. Next time you think of donating to something, remember breast cancer or more particularly a triple negative foundation. More research is necessary to detect what we need in order to survive. I have met several triple negative patients. Some are in remission and some like me are fighting for our lives. I am not down playing hormonal breast cancers because like triple negative, some women have recurrence or do not respond to treatment. It just goes to show how much more work is needed to cure this stupid disease. So hopefully this helps.
Don and I are doing okay. We are down, but trying to stay hopeful that the third time is a charm. We are exhausted physically and emotionally. I can speak for myself here and not him when I say that I am having a hard time getting through the day with out tears. I feel like I was overly confident with the trial since I had done carbo before and responded to it. I feel like my body is failing me and it is easy to blame myself. I know I am doing everything I can. I may not do yoga daily anymore or juice regular like I should be, but I am doing what I can physically do daily and that has to be enough. So see, I know this, it is just hard to remind myself of this all the time. I also know that I set the mood these days at home which is extremely difficult. Everyone- parents, friends, Don and the kids follow my emotions. So that is difficult because I'm human-I break down, but when I break, so does everyone else. And when everyone else breaks down, it makes it all real and scares me because it shows me that they are scared too. I'm not saying don't cry in front of me, but this hell has got to end. My faith in God has grown stronger and I have not lost hope, but this is beating me down. I need your prayers now more than ever.
Some has asked about my hair, my hair is getting weaker by the moment and will probably be gone by weeks end. I'm actually okay with that. I will miss it, but I left it short for this reason - I did not want to become attached to it. My fear is Ryan. He was too little to remember me without hair last time, so I do get concerned on what he will think. But I'm ready and my hair dresser is as well. Justin reminded me it is just hair. Sweetest boy around if you didn't already know that. He also has reminded me not to get upset because it might make my cancer cells grow. See, cancer is on all of our minds, it is a word used several times during the day here. I wish it was a swear word that I could tell him you can't say, but we have to teach him about this unfortunately and we have to educate him since he is forced to go through it with us. Someday this will all make sense….Until then, keep praying.
Treatment #2 on Thursday and then a week off.
Love,
Amber
Thursday we unfortunately did not receive the news we were hoping for. After only 3 cycles of on this trial, we learned that this stupid cancer decided to set up shop in a new lymph node in my lung / chest wall. I had wondered if there was something going on as I was having some pain in this area, but from the previous scan knowing there was already a node close to there, it made sense to believe it was the chemo knocking out that cancerous node. Nope, that wasn't what it was. It was very emotional for Don and I to find this out. Dr. Phillips gave us the news and informed me I was no longer eligible for the trial since I had progression in a new spot. At first I stared at her and waited for her to say something positive, when that didn't happen, I broke down. Dr. Phillips is so sweet and as I mentioned before, I believe we are about the same age, so I know this is not easy for her to give this news to us. After she rubbed my back for awhile, she decided to give Don and I some time alone. After what seemed like forever of me crying, she returned and we went over the next options. She had already consulted with a few other doctors including Northwestern and they all felt the next drug of choice was Eribulin. It is given for 2 weeks on and 1 week off - same as what the trial was. We will do 3 rounds (9 weeks) and then repeat a scan to ensure we are on the right path. I was anxious to start and Dr. Phillips was able to get our insurance on the phone and approved and we went off to the infusion lab for my first treatment.
My parents were anxiously waiting in the waiting room. I think they too were hoping for some reassuring news that the current drug was working. I was able to text a few words to my mom to prepare them since my eyes were about welted shut from crying. On the way to the infusion lab a few nurses stopped to hug me. It makes me feel good that the entire team at the University of Chicago is rooting for me and when I get good news, they are happy and when I don't, they are there for me to give me a nice hug. I think it was also nice for my parents to see what good hands I am in. I hope soon we can all high five, fist bump, hug, and cry tears of happiness. I am due I believe. This new infusion is very fast. It takes longer to get my blood levels than the treatment. The treatment takes 10 minutes. I was a little let down with this - I do enjoy my Benadryl induced coma. Oh well, after treatment I was able to crawl into bed and sleep the afternoon away while mom and dad tended to the kids.
Don and I have decided at this point, we need more confidence that we are on the right path. As I told Dr. Phillips, I feel like we are picking these drugs off way too fast and every time I get a scan I learn how much closer I am to death rather than how much closer we are to recovery. She has reassured me that we have more to go, but we have decided that it is time for a 2nd opinion. Back in January when I started the trial, I had reached out to Dr. Lisa Carey through Chapel Hill, NC. She is listed on-line as a triple negative guru. At that time, we e-mailed back and forth and she agreed with the trial and knew Dr. Nanda (Dr. Phillip's boss) At that point we were comfortable, but now that we are on to the next drug, I think it is good to get in front of her and have her look at me and review all of my scans and prior treatments. I was able to get in with her on April 2nd. I will fly out on my birthday (April 1st) and my parents will meet me there to take me to a nice dinner. We will stay at a hotel and then go to my appointment the next day and then I will fly home. It will be a quick trip, but I'm really looking for more reassurance or another option for treatment. The hope is they all agree, but if not, she can hopefully concoct a plan and have Dr. Phillips treat me here for it.
Since a lot have asked (I'm grateful for your questions because it shows how much you are truly invested in my recovery and well being) Why don't they know what to give me. It is not easy to explain, but here I will try. Triple negative means the cancer is not hormonal. Because it is not hormone related, there is not a set treatment. Triple Negative patients are grouped under one huge umbrella of "We don't know yet what to do with you so sit tight". Not funny, it is true. There are probably several different forms of triple negative, but science has not yet been able to detect each one so that is why we are just throwing things at this cancer and hoping me get a bulls eye. It is super aggravating as a patient and I know it is for you too. Next time you think of donating to something, remember breast cancer or more particularly a triple negative foundation. More research is necessary to detect what we need in order to survive. I have met several triple negative patients. Some are in remission and some like me are fighting for our lives. I am not down playing hormonal breast cancers because like triple negative, some women have recurrence or do not respond to treatment. It just goes to show how much more work is needed to cure this stupid disease. So hopefully this helps.
Don and I are doing okay. We are down, but trying to stay hopeful that the third time is a charm. We are exhausted physically and emotionally. I can speak for myself here and not him when I say that I am having a hard time getting through the day with out tears. I feel like I was overly confident with the trial since I had done carbo before and responded to it. I feel like my body is failing me and it is easy to blame myself. I know I am doing everything I can. I may not do yoga daily anymore or juice regular like I should be, but I am doing what I can physically do daily and that has to be enough. So see, I know this, it is just hard to remind myself of this all the time. I also know that I set the mood these days at home which is extremely difficult. Everyone- parents, friends, Don and the kids follow my emotions. So that is difficult because I'm human-I break down, but when I break, so does everyone else. And when everyone else breaks down, it makes it all real and scares me because it shows me that they are scared too. I'm not saying don't cry in front of me, but this hell has got to end. My faith in God has grown stronger and I have not lost hope, but this is beating me down. I need your prayers now more than ever.
Some has asked about my hair, my hair is getting weaker by the moment and will probably be gone by weeks end. I'm actually okay with that. I will miss it, but I left it short for this reason - I did not want to become attached to it. My fear is Ryan. He was too little to remember me without hair last time, so I do get concerned on what he will think. But I'm ready and my hair dresser is as well. Justin reminded me it is just hair. Sweetest boy around if you didn't already know that. He also has reminded me not to get upset because it might make my cancer cells grow. See, cancer is on all of our minds, it is a word used several times during the day here. I wish it was a swear word that I could tell him you can't say, but we have to teach him about this unfortunately and we have to educate him since he is forced to go through it with us. Someday this will all make sense….Until then, keep praying.
Treatment #2 on Thursday and then a week off.
Love,
Amber
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