Monday, June 16, 2014

My response to Representative Stinziano

Good Morning Representative Stinziano,

 Thank you for considering the petition for Prostate Cancer.

My personal connection with Prostate Cancer started June 19, 2009 this is a day that will forever be a day that I would love to forget. My husband had a PSA test and biopsy on June 15, 2009 as his PSA was elevated a few months earlier. On the day of the biopsy we drove to Wright-Patterson Air Force Base as my husband is retired Military and we go there for Healthcare. After the biopsy we drove back to Canal Winchester not thinking that there was anything wrong. But on June 18th my husband got a phone call from the Urology Department that the doctor need to discuss the results of the biopsy and I needed to be there. No RED flags going off in my mind that there was anything wrong.

We return back to Wright-Patterson AFB on June 19th and check in at the Urologist office. The urologist had cleared his schedule for that morning to speak with you. Again No Red flags when off! We are met by the urologist and go into his office sit down and he had an look that there was something wrong. He proceeds to discuss the results of the biopsy. The results from the biopsy shows that you have an aggressive form of prostate cancer at the age of 56. My husband is just as shocked, stunned and devastated. As for me I was the same but when very quiet as and just wanted to wake up from this horrible nightmare. Except this was not a nightmare it was real! The Urologist gave is time to absorb the news and when we were ready he would and answer questions that we had and discuss treatment options. But my husband's only option that he wanted done at that very moment was to Take it out now (That very minute)! But that was not possible so soon after the biopsy he had to wait at least 6 weeks and also weigh the treatment options. We asked the questions How? Why? But my major question were Did I cause it? And then it hit me what about our 4 sons in their 20's now their chances of prostate cancer had increased. Now I feel even worse! I brought 4 lives into this world that they could die from prostate cancer! There is a chance that it will not affect them but the unknown is hard. After the tears, fears he proceeds to give us the information that we needed. But with all the information I felt like I was in information Overload. The Urologist said to become students of prostate cancer and learn all that we can on the treatment options. The trip home that day was the longest ride of our lives. Very quiet and more tears! The next morning I did as the Urologist suggested and to become a student and with the internet I started searching for more information about the treatment options, and also for a support group for both of us as I know that I needed a support group. As now I have moved from the roll of a Wife to a Caregiver!

Once I found information about the options I shared them with my husband. But he did not want to hear any option but surgery. Take it out now! He along with I started to become depressed so the support group would be a much needed system. During the calling of the support groups that I called the response Sorry No Women allowed. But wait prostate cancer is not only a man's but it is a couple's disease. Many time I told my husband to attend one of the groups but he always said No we are in this together! It took from June 19 to August 10 to find a support group for both of us. That day I called an Us TOO International Support Group in Lancaster and asked if both Men and Women are Welcome. Of Course! So on August 10 we found a new extended family of Prostate Cancer Survivors!

Now we are getting to the option that my husband had chosen surgery. We have a surgery date of October 12, 2009. We are now having the surgery in Columbus as Wright-Patterson AFB did not have the DiVincci Robot yet. The day of the surgery my husband was wheeled into the operating room and for me I had to stay strong seeing him enter the operating room. I was praying so hard that after the surgery there will be no more cancer! After he was out of my sight I broke down and cried and prayed it felt like it was days that he was in there but it was only about 8 hours. I get the call that he is out of surgery and in the recovery room and the doctor will be out shortly to talk with you. The Surgeon came out and said he did fine in the operating room. The prostate is out but the cancer has spread to his lymph-nodes. He said that at the post-op appointment we will discuss the options for treatment. Again more tears,  fears! The options that was chosen was hormone therapy and started on that soon after surgery. Has been doing hormone shots for the pasts 5 years and did radiation for 7 weeks from October to January to treat the prostate bed and also the lymph-nodes hoping to eradicate the prostate cancer in the lymph-nodes. Sadly it did not eradicate it.

Every 3 months he has his PSA test to make sure the prostate cancer is still in remission. Having the PSA test on takes a few seconds to draw the blood. It feels like years for the results to come back but it is only days. Yes it is stressful waiting on the results but for right now. The USPSTF has recommended that men do not get the PSA test I disagree 100% without the PSA test we would have never known that my husband has cancer. Last year I had sent letters to Representatives in support of Senate Concurrent Resolution 10 and both my husband and I testified in support of it. I still follow it on the Legislative website as it is waiting on Governor Kasich's signature. I will do whatever it takes to keep the PSA test as it is currently on only test available.

Since my husband diagnosis I have become a very active advocate for Prostate Cancer Awareness. In 2010 I won an award for my part in trying to raise awareness. In 2012 my husband and I went to Washington DC to attend the ZERO The End of Prostate Cancer Summit. On the last day of the Summit ZERO sets up meeting with our Representatives from Ohio our 1st meeting was at 8:30 am with Senator Brown September 13th. My first time on Capitol Hill was another day I will never forget! I TOOK a SPILL on Capitol Hill and broke my leg. The time was about 8:15 am when it happened but that did not stop me from attending the meeting and sharing my story on how prostate cancer has affected my life as a caregiver. So many of the Survivors from the Summit seen me and said that I was a very dedicated person to continue my day with a broken leg. Yes there was pain and I continued to the other two meetings but it was to important for me to go to the hospital at that time. I will go after the meetings were done. When we get to the Emergency Room they asked how did I do it. Same response I Took a SPILL on Capitol Hill! They chuckled but were also impressed with me continuing my day. Dedication!

I apologize for this email being so long now you have a small glance into the life of a Prostate Cancer Caregiver's life. My next challenges for Ohio is to have a Prostate Cancer Day Proclamation and also one for September for Prostate Cancer Awareness month. I am proud to say that now Ohio had one for Movember as I was persistent and one was written last year for the first time.

Thank you for your time and consideration in what is very important to me as a Wife/Caregiver and Mother of 4 young sons. The pictures are of my creative way to raise awareness for prostate cancer. He is Petey The Prostate Crusader and is my creative idea.

Linda Hoetger


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