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, 


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.