What an awesome trip. I have been in Minnesota/Wisconsin since Friday, June 24th. My trip started with a FreeToBreathe Lung Cancer Conference. My brain is on overload with all the wonderful information I learned and all the upcoming treatments that will be able to help all of us trying to survive this horrible disease.
On Sunday, my brother Alberto picked me up from the airport and we had a Spaghettifest with his wife, Stacy and her entire family. WHAT A WONDERFUL GROUP OF PEOPLE. You may remember I was not able to attend their wedding due to my chemo last year so this was my first time meeting them. They welcomed me with open arms and love as if I had known them my entire life. Tomorrow is my flight home, so tonight they are having another get together to say goodbye to me. I am going to miss them all so much.
The last two days Alberto and Stacy have taken me to see various areas of the Minnesota/Wisconsin area. It is breathtakingly beautiful. I am actually writing this post in the hotel business area so I will not be able to post pictures until I arrive home.
I may have mentioned before, since beginning chemo, radiation and immunotherapy, I have gained 40 lbs :((( but when I arrived here I weighed myself and realized I have lost 23 lbs in the past 3 weeks. Not sure how but I'm not complaining. Although, I am quite sure my doctors will not be happy next week when I go in for my next infusion.
I have felt my normal self while here, with the exception of the last 2 days. Both days, for about 5 minutes, I developed double vision. The first day I blew it off. The second day I called my Oncologist office. The nurse indicated if it continues for longer than 5 minutes, then I should go to an emergency room. Otherwise, they will see me Tuesday. ( I'm voting for Tuesday ). I am a bit alarmed because I don't know if this is a side effect of immunotherapy or something else (which we will not speak of yet).
My plan is to see the doc Tuesday, immunotherapy Wednesday, then leave for a 10 day trip to visit my relatives in Virginia. I think at this point, I have to wait until I see the doc to confirm it is still okay for me to go. Keep you fingers crossed for me.
A special thank you to my brother Alberto and sister-in-law Stacy for their hospitality. Lack of sleep while I'm here and their love. Poor Alberto works nights and has had a terrible lack of sleep during my visit.
A special thank to to the Koblas/Ratcliff family for all the love they have shown me while I was here. I will miss you!!!!
So keep those prayers coming - we shall see what happens Tuesday at the doctor.
Wednesday, June 29, 2016
Tuesday, June 14, 2016
Updates and Thoughts
As I continue my Opdivo treatments every other week, things are coming along smoothly. Aside from a few minor side effects, it is amazing how much better I feel compared to when I was on Chemotherapy. During my day, I find myself thinking crazy thoughts...or maybe ramblings.
This day is a perfect example. Three of my children had recently learned their mother had lung cancer, are sitting in the surgeons office with me, I am barely walking and had a tube coming out of my back - but they managed to bring a smile to everyone's face. Including mine.
When I feel I am having a bad day and think of the negatives surrounding cancer, I just look at this video and realize there is good in everything. Sometimes you just need to search for it.
An online friend who has a wonderful blog recently posted about the abundance of people that post things on social media that start with "_____ cures cancer." Beet juice, eat a lemon a day... you name it, it's been claimed to cure cancer. Do you know how infuriating this is for someone with cancer when someone says, "oh you should be drinking 3 glasses of beet juice a day - that will kill it." UGH, really, then wouldn't the entire world be cancer free?
I know every word from family and friends mouths are meant to be the best of intentions, but seriously, if this type of stuff worked, why would I be abusing my body with chemotherapy, radiation, etc.
My days are filled with trying to find Hope. Hope that I will be around long enough to see my children get married, to see and love my future grandchildren, to see my grandson Cameron grow up. These types of thoughts do scare me at times as I am realistic enough to know that I may never see some of these things. I've already been on 4 different lines of therapy and am not sure what is left for me if Opdivo fails.
So what do I do to keep my spirits up? My children. Somehow they always manage to say something or do something that makes me smile or crack up laughing.
This video below is the PERFECT example. After my lung surgery, you may remember, I had my chest tube for 6 weeks at home. I had to go to the doctor every Monday for him to check it. This particular day, Greg, Caitlyn and Maria (Doodles) took me. As with every visit, they would wheel me into the waiting room. I would get up and walk to the exam room. After about 15 minutes, I came out - the receptionist and nurse gave me the strangest look (while smiling) and when I walked out, Greg, Caitlyn and Maria (Doodles) were hysterically laughing. Below is how they amused themselves while I was in the Doctors exam room.
TURN YOUR SOUND UP
I have no words. I walked out and was laughing so hard when they showed the Doctor and I the video that I was bent over in pain. I try to look at this video as often as possible because the lesson here is.......
Any situation can be depressing and heartbreaking - but we must make the best of it. We must find the best of everyday and celebrate that.
This day is a perfect example. Three of my children had recently learned their mother had lung cancer, are sitting in the surgeons office with me, I am barely walking and had a tube coming out of my back - but they managed to bring a smile to everyone's face. Including mine.
When I feel I am having a bad day and think of the negatives surrounding cancer, I just look at this video and realize there is good in everything. Sometimes you just need to search for it.
Thursday, May 12, 2016
Minneapolis, MN - Here I Come
Between my trip last week to the LUNGevity Hope Summit, then my scare from my scans, I've kept quiet about another opportunity that I have been given.
FreeToBreathe.org has graciously invited me to another Lung Cancer Conference. It will be June 24th and June 25th in Minneapolis, MN. And, just like the last conference, I will be staying in Minneapolis for 4 days after the conference. My brother, Alberto, and his beautiful wife, Stacy, live near there so this is a great opportunity to visit with them.
FreeToBreathe is a partnership of lung cancer survivors, advocates, researchers, healthcare professionals and industry leaders. And we are united in the belief that every person with lung cancer deserves a cure.
The agenda for the 2 days can be found by clicking here. It sounds incredible.
Oncologist Appointment
First and foremost, let me thank everyone for all the love and support I have received the last few days. I have been a nervous wreck as you can imagine.
This morning, my son Gregory and I met with my primary Oncologist. We reviewed the report and he showed us the images for the various lymph nodes and the tumor in my right lung.
While he is concerned there is growth, he feels since I am tolerating the Opdivo extremely well, that we will continue on this course. I will have scans again in a few months but he doesn't think we should change our plan or panic unless we see large amount of growth. It is very typical for the first few scans when on Opdivo, that the malignant areas get larger. That is what Opdivo does in the beginning.
Many of you already messaged or called me and told me not to panic on Monday when I found out they got bigger - you knew it was pseudo-progression - I should have listened more closely and the last few days may have not be as nerve wracking as it was - THANK YOU!!!
God Bless all of you who follow my journey and include me in your prayers - it's working.
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