Ironically our slogan when I played football at St. John's was
"With God All Things Are Possible".
It is amazing how life comes full circle.
Jay Holdgreve: "I have Testicular Cancer"
Never in my life did I think I would make that statement or ever think about what if I "get" cancer, let alone Testicular. Actually, I spent most of my life ignoring it because it scared the "doo-doo" out of me. Most of my experience with cancer has been worse case scenario. Luckily my Aunt and Uncle both recently beat Colon Cancer, so my outlook was changing.
Here I am diagnosed with Seminoma Stage 1 or 2 Testicular Cancer ( I will explain that later), been through an Orchiectomy, and currently under a rigorous surveillance program consisting of CT Scans and blood work every three months for a minimum of five years. Why? How? Those are the two questions that have not been answered and they are the central focus of my plight. I want to help find those answers so others don't have to go through this unknown.
I am just a regular guy, born and raised in Delphos, graduate of Ohio State (Exercise Science,99) and Cleveland State (Sports Marketing,01), married (2001), three kids (1 girl, 2 boys), a good job (OrthoNeuro), and live in a quaint Dublin neighborhood. As an athletic trainer I have worked with thousands of athletes, coaches, physicians, etc and traveled the country to some of the greatest venues (Rose Bowl) and competitions. I spent time working with the San Francisco 49ers (98) and the Cleveland Browns (99-01). I must admit that I am one lucky guy to have had these opportunities and experiences.
I have known my "inner circle" of friends for thirty+ years; we have been through a lot together. I could have a website dedicated to all of our adventures over the years: the Lake Baby, B5's and the houseboat on Cumberland. They, along with our other friends, have played a bigger part of my journey than they probably realize- Thank you!!
I can't say enough about how much my family means to me, I will never be able to express how appreciative I am for all of their support. You know your family loves and cares for you, but I never understood the level until now. It brings a tear to my eye every time I think of how much they care for me and my family- I am truly blessed.
Of course my life is not perfect, but I can't complain,
The following is a synopsis of what I have gone through. I have found sharing my experience therapeutic and I am grateful that by sharing my story others will or have arranged a doctor visit or annual exam.
Late May-Early June 2010
We were putting the final plans together for a couples whitewater rafting trip to West Virginia when I started having rather significant right low back pain and right quad/hip flexor tightness. I have always dealt with low back pain and a hip issue so I didn’t really think anything more of it; my main concern was "how I was going to sit in a raft for over four hours."
We made the trek to West Virginia and had a fantastic time with our friends. Luckily my wife is not fond of water or drowning, so I stayed with her and did not raft so I avoided the extended sitting situation.
With lots of stretching and ice I was making it through. I assume this is the time I actually started having symptoms but there is no way to know.
July 13, 2010
The low back pain and hip tightness continued. I went to see my Family Physician, Dr. Pongonis, to get an adjustment. I explained to him that I was having right low back pain, right hip tightness and a dull ache in my groin. He went through the exam and adjusted my back and hips and I left feeling better. The next week or so I felt better, but the ache in my groin continued while sitting in certain positions. Looking back I should have put a bigger emphasis on my testicular pain, but like most guys I was in denial. "I am sure it is not Testicular Cancer, it is probably a cyst"
August 8th, 2010
My parents were in town for the Dublin Irish Festival and my dad was telling me how a family friend (Mike) had a couple of accidents and it was discovered that his cancer had spread; he had not reported his new symptoms. The diagnosis was bleak. I had known Mike a long time, his son Nick and I are the same age and his other son Tony is married to my cousin. On top of knowing him through his sons I also golfed with him regularly in the late 90's and early 2000's.
That evening I was reading books to my daughter and she rested her head on my chest and it felt like glass was poking my right nipple. Tears instantly filled my eyes. I have never felt anything like it. I barely slept that night thinking about the horrible nipple pain.
August 9th, 2010
That morning at work I had an uneasy feeling. I was sitting at my desk and the groin pain seemed more intense. I googled testicle and nipple pain and the search results came back Testicular Cancer. I went to WebMD and put in the same symptoms- Testicular Cancer. I was also suffering from a summer cold that I could not shake, so I added those symptoms. The results were even worse- Testicular Cancer with possible spread to the lungs. I immediately went into the work laundry room (sound proof and my part-time office) and called Dr. Pongonis' office. I explained my symptoms and informed the scheduler that I must be seen immediately. My appointment was scheduled for the next day.
The rest of that day was a blur. I had to tell my manager that I was going to the doctor and that it may be serious. She was the first person I told, it felt like a weight was lifted off my shoulders. I had been afraid to tell my wife because I didn't want her to worry or Google what I already knew.
I went home and informed Brooke what was going on and immediately she became my teammate in this battle, we would go through this together and she was okay with my demand, no one can know. I swore her to secrecy until I had an official diagnosis. I could not handle people feeling sorry for me, fearing the worse or asking a million questions that I did not have answers for.
August 10, 2010
I returned to the OSU Sports Medicine Center to see Dr. Pongonis. I explained to him my other symptoms, my own research and then he performed his exam. He noticed a difference between the two testicles but not a lump; the cough was also a little concerning but seemed to be a cold, probably due to stress. He immediately ordered blood work and an Ultrasound that needed to be performed immediately. I got my blood drawn and the Ultrasound was set up for the next day at the OSU Carepoint in Gahanna. I have known Dr. Pongonis for a long time and I could see the concern in his face as he talked with me that day. It confirmed what I already knew- it was cancer.
research I learned that HCG levels is tumor marker for testicular cancer. It causes nipple pain and breast enlargement and at that time I was borderline needing to wear a bro. The wait continues.
August 11, 2010
I arrived for the Ultrasound and I was very impressed with the facility and the staff. I was directed to the procedure room and it had to be the coldest room I have ever been in. Not a good condition for below the belt testing. I will spare you all the details but the kicker of exam was that the individuals performing the test were attractive young women. All I could think about was the Seinfeld episode when George and Jerry wondered aloud "Do women know about shrinkage?" It took the edge off. They were professional and thankfully the gel was very warm!! Now we wait.
August 12, 2010
Happy Birthday to me!!! I received a phone call that night from Dr. Pongonis about my blood work. One tumor marker, HCG, was elevated so that increased my probability of having testicular cancer, so now we had to wait for the Ultrasound results. I quickly googled HCG and noticed that it is a pregnancy hormone so I thought I heard him wrong, but with more
Seinfeld- "The Doorman"
"You want me to wear a bra?" Kramer
"No, no, a bra is for ladies. Meet the Bro!" Frank Costanza
"Bro's no good. Too ethnic." Kramer
"You got something better?" Frank Costanza
"How about the Mansiere?" Kramer
"Mansiere." Frank Costanza
"That's right. A brassiere for a man." Kramer
August 14, 2010
Happy Birthday Brooke- I have Testicular Cancer!!! What a birthday present to give your wife.
Weeks before, my friends had planned a weekend trip to our buddy Dean's river place. Brooke and the kids were going to stay at her parents and I was going to spend the weekend with the guys. I was packing my in-laws fantastic Lumina (Hancock Hooptie) when I received a phone call from Dr. Pongonis; it was 8:30 am on a Saturday. He said the Ultrasound came back positive, it was not a cyst and it seemed to be Testicular Cancer. He assured me to go about my business over the weekend and that he would call a colleague at The James and set me up with the best possible care. He would contact me Monday with a referral.
I asked Brooke to come outside and I told her what he had to say. I once again swore her to secrecy and that I would be fine and told her not worry (she admitted she didn't listen to that advice) luckily she had told her mom so she had someone to comfort her and help her stay strong that day.
I needed to go to the river for a day of fun, with the goal of keeping my mind right. I do not regret that decision one bit. I wanted normalcy so I didn't tell them a thing. The day started off overcast but quickly turned very sunny and it was a perfect day to grill on a pontoon, play cards in the water and throw peanut shells and onions in the river and watch the reactions of others as they floated by. I did take a jet ski back to the cottage, around five, as the others
continued to hang out at the sandbar. I had a horrible head ache so I took a nap, a big mistake when on a guy’s trip. I was startled awake by a bull shark attack. Not a real bull shark of course, but one filled with ice cold cooler water and shot directly in my face- thanks Dan!! After the shock of the coldest water on earth smacking me square in the face I rallied. I joined the guys at the Five Span Inn for the greatest night of karaoke that there has ever been or will be. The D.I.C.K.S. dominated the evening.
August 23, 2010
This was my first trip of many to The James Cancer Hospital. My initial consult was with Dr. Ahmad Shabsigh. I was very nervous going into The James, I had no idea what to expect. I was pleasantly surprised. From those working registration, the aides (Michelle), nurses (Jackie & Jenny) and Nurse Practioner (Kellie), everyone was exceptionally nice and professional. My nerves started to ease. Once Dr. Shabsigh entered the room I was sold on everything he told me. He was confident but down to earth, funny, but professional; he was the perfect doctor for me. Plus Brooke loved his suit and shoes! He laid it all out on the table. I had Testicular Cancer, it was over 95% curable, he was very confident that I had non-seminoma (the worst) and he would work me in for surgery by the end of the week (Friday). My right testicle had to be removed. I still am in shock that the standard of care is testicle removal and he talked like it was no big deal. He scheduled me for a CT scan for my chest and abdomen. The cough was still hanging around, but not as bad. It would be the next day.
phone calls, but at peace, I slept great that night.
August 24, 2010
I arrived for the CT scan and was given 2 giant cups of yummyness to drink. I actually didn't mind it, it tasted like mint Mylanta. I was on my second cup when a lady in the waiting room asked if this was my first scan. I said yes and then asked what it was like, I had no clue. She said that I will lie on a table that slides in and out of an "O". Before the exam they will inject the medicine into the IV and you will taste metal and it will make you feel like you "pooped your pants". She must have seen the shock on my face because she assured me that you
don't but it gets really warm down there. I thanked her for the information. I went back and holy cow she was right!! I am very thankful for her letting me in on the secret. I was shocked that the scan was less than 2 minutes.
I got a call from Dr. Shabsigh and the surgery was scheduled for 4 pm on Friday. No food or drink after midnight Thursday. The surgery was not freaking me out but not eating for that long was!! I am a big man, I need food, plus I get very moody when hungry!
August 24, 2010- Breaking the Silence
The moment I was dreading the most was now here, I had to tell my parents. I would start with my dad, because I knew mom would freak out. My dad and his boss (Mark) were in Florida installing cabinets so this is one reason why I couldn't do it in person, the other was time. Mark's sister lost her battle to breast cancer a few months ago so the thought of the two of them driving back to Ohio after this news was not what I wanted, but I had to. I gave him a call and he was in the middle of installation, he would call me back when he was done.
I had to tell someone so I called my best friend Dusty, he was working in Utah. He was in shock and scared. I spent more time making sure he was okay, assuring him that I would be fine. That wasn't so bad.
I called my sister and let her know. She is a nurse so she had lots of questions and since I waited I had answers. Of course she asked how mom and dad took the news; I told her I hadn't told them yet. Her response: mom is going to flip out.
I then got the call from dad; they were in the van heading to get something to eat. I told him the news and I could almost feel the life get sucked out of him. I assured him that I was going to be alright and let him know all of the facts. He would do everything he could to make sure he was there for the surgery (he got back at 4:30 am Friday). "Have you told your mom, she is going to flip out"- do you see the pattern.
After I hung up I cried for the first time, all the emotions that I wasn't noticing came pouring out. I was dreading telling my mom because she would flip out and she was alone. After I composed myself I gave her a call. I told her the news-silence- then calm questions and statements followed. No flipping out!!! I could tell she was about to break down but she held it together for me and that meant a lot. She would for sure be down on Friday to watch the kids and help around the house, luckily dad made it to. I was completely exhausted after the
August 27, 2010
The day has finally arrived. My prayers were answered the day before when The James called and moved up my surgery to 11:30am, I could handle not eating until that time!!! My parents arrived around 8 (yes my dad made it back) and then Brooke and I headed down to The James. Together we researched Orchiectomy so we understood the process but still there were some unknowns. I was still amazed how they perform the procedure and then an hour later you go home. A big elephant in the room was that the results of the CT scan were not known.
I arrived at The James, had a short wait and then headed up for surgery. I was in an outpatient surgical prep room and Brooke was by my side. Dr. Shabsigh and Kellie both came in to check on me and answer any questions. Kellie was able to print off the CT results and they were negative- The Cancer Had Not Spread to the Lungs or Abdomen!!!! What a relief!!
Immediately after the CT results I was wheeled back to the surgery and then woke up around 1.5 hours later in the recovery room. I came out of the anesthetic fine and I actually felt really good. I checked out the incision, 3 inch cut in right lower abdomen, it was glued together. I got up and walked around and then they released me. I was ordered to go out in a wheelchair but the male volunteer who was supposed to help me tried to talk me into walking out on my own. The nurse set him straight and he silently wheeled me to the front entrance and parked me in the bright, hot sun as we waited for Brooke. I hate being hot and I was sweating
profusely!! I got in the car and about a mile down the road the most extreme case of nausea I have ever experienced hit me. Fortunately everything stayed down and once I got a hamburger in me I felt great. I got home and we gave the kids the lecture that Daddy loves them very much but I can't lift them and they can't jump on me!
I am very grateful to Ryan (& Lauren) from Jet's for sending pizza and breadsticks so we didn't have to worry about getting everyone fed. My parents still rave about the BBQ Chicken Pizza!!!
Shockingly, the recovery was rather pain less. I only took 3 prescription pain pills. Ice was definitely my friend!!!! The swelling and the bruising was out of control! Also a good pair of supportive draws was a big help. I started walking the neighborhood immediately; I believe that was the key to my speedy recovery. I was under doctor orders to not drive (7-10 days) and return to work using the same time-table. I took four days off and then drove myself to work on the fifth. I made sure I didn't do anything crazy- lifting, pushing, pulling, etc. I was glad to get back to my "normal" routine. My only regret is passing on going to the Ohio State vs. Miami football game. By the way the glue worked great and pulled off as the incision healed.
September 20, 2010
Time has come for the post-surgical follow-up. Dr. Shabsigh had told Brooke that he did not see any signs that the cancer had spread while performing the surgery so we were confident going in to the appointment. Dr. Shabsigh came into the room and was impressed on how well I was doing. He then gave us the great news that he was wrong, I had Seminoma (most curable, the good type), not Non-Seminoma. Of course with the good comes the bad. There was a lymph node (stage 2) on the CT scan that was of concern. He suggested Radiation Therapy but I could do a Surveillance Program. Punch to the gut!!! I was due a CT scan (Sept.22) so we agreed that I would get it and if the lymph node was the same size or larger Radiation would be my treatment. We walked out in shock and confused, Google here we come. There was a ton of information I needed to help make this decision.
September 27, 2010
Dr. Shabsigh entered with the results and the lymph node stayed the same size. I decided before the appointment that I was going to follow his suggestion, he was the expert. His recommendation was get Radiation Therapy and knock it out so there was nothing to worry about. He was contacting Dr. Douglas Martin, Radiation Oncologist, and setting up a consult ASAP. He would work me in on the 29th.
September 29, 2010
This is the point of the journey where it became "real". The basement of The James was an eye-opening experience. The waiting room was full of patients that were in a lot worse shape than I. I felt so guilty sitting there. This is the point when it hit me that I was truly blessed and I needed to Pay It Forward.
We were brought back through a lead door, down an empty hall, and into a room. The nurse handed me a Radiation Therapy guide and answered some of our questions. Unfortunately I can not remember her name but she was very kind. She informed us that Dr. Martin was still performing a procedure and would be with us as soon as he could. Luckily we both had something to read.
Our appointment was at 4 and at about 5:15 there was a knock on the door and a sound of keys. My first thought was that a janitor was locking the room as we were there after hours and alone in this hallway. I jumped out of the chair and did a Dukes of Hazard slide across the table and started pounding on the door stating we were inside. I then realized that I could open the door and as I swung the door open there was Dr. Martin holding his keys. He was just trying to get in. That definitely broke the ice!!!
He immediately started my head spinning by announcing he didn't think the lymph node (stage 1) was enlarged, it was within normal parameters. In his expert opinion he did not think the risks of Radiation Therapy were worth it. There was an 85% chance that the lymph node was not cancerous. It was still my choice on what treatment plan I wanted to follow. He was going to converse with Dr. Shabsigh and other colleagues and he would get back to me.
We left The James that day even more confused and I felt like all of the energy had been sucked out of me. Back to the internet for more research.
October 11, 2010
I returned for a consult with Dr. Shabsigh. Brooke and I had researched tirelessly all of the pros and cons of surveillance and radiation. I had made up my mind after lots of inner battles and prayer- Surveillance. Dr. Shabsigh informed me that he had consulted with some colleagues, Dr. Martin and the head of the Chemotherapy Oncology department and they all agreed that a surveillance program would be fine. Even if the lymph node enlarged or spread it would be caught early enough. That cemented my decision for surveillance. I have so much respect for Dr. Shabsigh, Dr. Martin and the rest of the staff at The James and their opinion holds a lot of weight, they are the best for a reason. Every 3 months I will be getting a chest x-ray, CT scan (abdomen & pelvis) and blood work.
October 12, 2010
My mom called and informed me that our friend, Mike, passed away this morning. I was sitting in my basement, I hung up the phone, prayed, cried and then I prayed some more. I felt an extreme guilt build inside me, I was going to be okay because of Mike, and now he was gone.
October 14, 2010
I left work and drove the two hours to the visitation. I was alone so numerous thoughts were racing through my mind, the biggest being don't cry. I have a real hard time not crying when I see others doing so and I wanted to be strong for his family. I arrived around 5:30 and I took numerous deep breaths, wiped off my sweaty palms, prayed for strength and walked in. Worse case scenario unfolded, there was a line. I stood there and I watched the family receive condolences from friends, spoke with Mike's granddaughter and observed the photos, flowers and cards. I could feel myself losing control of my emotions, my mind was racing. For the first time during this whole process I started thinking that I could be the one who died. If I did not hear about Mike's situation I very well could have ignored my symptoms; allowing the cancer to spread and at a minimum destroyed my quality of life.
It seemed like hours as I waited and with each tick of the clock my emotions became more unstable; more deep breaths. I said a prayer at the casket, said my condolences to his daughter and to his wife, no tears. Then I went to speak with Nick (the son my age), totally lost it. I wanted to let him know what an important role his dad has played in my life, but I could not get it out. Now here he was consoling me. Now it was time to talk with his other son, Tony, and his wife Tricia (my cousin). Once again I could not talk with out a waterfall of tears, once again they were consoling me. They knew how I felt about Mike and it was okay that I could not say a word.
I left the funeral home and drove the two hours back home, tears rolling down my face the whole way. That was by far the roughest night of this journey, but it was a very important step in me coping with all that had gone on and what was in my future. Mike saved me and I vowed that I will do my part to "save" others. This is where "Pay It Forward" came into focus.
December 13, 2010
The first 3 month exam has arrived. I went for the CT scan a week earlier, today is the results. Once again the staff at The James was fantastic. Dr. Shabsigh reported the lymph node was the same size!!! See you in three months.
Before I left I clued in Dr. Shabsigh on my website and formation of The Jay Holdgreve Endowment for Testicular Cancer Research. The look on his face was thank you enough! He had just returned from the NCI conference and starting a registry for rare Urological Cancers was on the agenda and he thought we could team up and make it happen.
"You can never pay back, but you can always pay forward."
March 14, 2011
Another 3 months have passed and today the results are in from another round of testing. I did the CT Scan, Chest X-ray and blood draw the Thursday before so I should be in and out.
I arrive at The James for my 1:30 pm appointment and I check out the monitor and it states that Dr. Shabsigh is one hour behind schedule. I start reading the USA Today NCAA Tourney special section to pass the time. As I start reading a James worker wheels up a cart with drinks and snacks and explains that Dr. Shabsigh was running late and I could have a complimentary snack. I noticed everyone in the waiting room was there for Dr. Shabsigh, this could be awhile. I open the paper and I hear my name, it is Kellie (Dr. Shabsigh's Nurse Practioner). She tells me to come on back and so I head to the room after waiting 5 minutes!!
Dr. Novak was the first in the room. He went over my history and changes in the last three months. Nothing to report on my end, I have been feeling great. I did have one question- What am I considered- in remission? survivor? cancer patient? His answer was that I have a history of cancer and in 3 three years I will be a survivor. I thought that was an interesting answer.
Dr. Shabsigh entered the room a few minutes later and as usual he is all smiles. We talked about tcare.org, the Endowment, Bowling for the Boyz and the pending Testicular Cancer Awareness promotions and he is so excited about all that I am doing. It cements the fact that I am Paying It Forward!!
He does his exam and announces that my tests were all negative and he had a surprise for me. The lymph node has shrunk!!! All of the prayers are being answered!!! He announces he will see me in 3 months for the same routine. Great day!!
April 16, 2011
Ohio State vs. Michigan State baseball teams wore my Testicular Cancer Awareness decals on their batting helmets for today's game on the Big 10 Network. I greatly appreciate Coach Beals and the OSU promotions department for allowing me the opportunity to raise awareness for Testicular Cancer. I had a booth at the front gate with informative cards and tcare.org t-shirts. I also had the opportunity to throw out the first pitch and was accompanied by Dr. Shabsigh. We made our way to the mound and then what seemed like hours they introduced us and the cause. It was cold, damp and windy so the crowd was just under a thousand people but it seemed like a million people just quietly staring. I wound up and uncorked the pitch, as soon as it left my hand I knew I was in trouble. Thankfully the OSU catcher (Steele) slid sideways and scooped it off the dirt. I must say that nerves got the best of me along with my lack of baseball talent. Of course my buddies (Dan, Mike, Dean and Luke) boo'd me as I walked off but the rest of crowd cheered and the OSU baseball team wished me luck. The day was a big success and hopefully next year we will do it again and the weather will be better.
Channel 10 was at the game and I did an interview for the six o'clock news, that was a big help in getting the word out.
It was great to have Brooke, my kids, sister and her kids, my mom, The McDaniels, Dr. Shabsigh, Dr. Sharp, Mike (Testicular Cancer Society) and my buddies from Delphos in attendance. Also it was great to meet some other men who have battled Testicular Cancer. Also a special thanks to OSU student athletic trainers, Melissa & Kandis, for helping me at my informational booth.
April 30, 2011
Bowling for the Boyz has arrived. After 24 hours of panic and last minute preparation everything was ready to go.
My Uncle Al and Aunt Chris brought an SUV full of goodies for the event. Over 20 silent auction items and over 25 raffle items line the bowling alley. Mark Wurst set up his karaoke unit and Jeff Davis brought the guitar to entertain the crowd.
I rolled the first ball to kick off the event and I immediately put it in the gutter!! Around 4 o'clock the people started streaming in and by 7 close to 150 people were in the place!!! Family, friends, neighbors, classmates, and people that I have never met were all together to support the cause. WLIO out of Lima came to shoot some live shots and do an interview for the 11pm news. After 3 takes the interview was finally acceptable and then he taped Jeff Davis singing AC/DC's classic song "Big Balls"!! After Jeff did a fantastic job singing and entertaining the crowd, the karaoke machine got fired up. Brandon Hoehn showed his range with his renditions of Brittany Spears songs.
The lanes were all full and pins were falling. 12 cans of turkey were given out as rewards to those bowlers who rolled the proverbial "Turkey". Numerous adults and kids won door prizes donated by individuals and businesses. The night ended at 9 pm with winners being announced.
Fun was had by all and the plans for next year began that evening. Bruce (owner of bowling alley) and I agreed that next year we will do it bigger and better. Thank you to everyone who attended, supported or passed the word about bowling for the boyz!!
August 14, 2011
Wow!! It has been one year since the fatefull phone call. There has been lots of ups and downs and thankfully more ups than downs. The support I have received from family, friends and strangers has been mind blowing. I am most proud of the success of this website and the Jay Holdgreve Endowment for Testicular Cancer Research at The James. In a little over 8 months over $12,700 has been raised, AMAZING!! Even better is that men are talking about Testicular Cancer and society is listening.
Bob Capace and Worthington Jewelers have been instrumental in what I have accomplished. Without them agreeing to meet with me and introducing me to Gary (the greatest graphic artist in Columbus and beyond) I don't know if my ideas would have ever came to fruition. The battle still continues and I promise bigger and better promotions and awareness programs in the future.
August 15, 2011
One year follow-up with Dr. Shabsigh, blood work looks fine and no TC symptoms. I do report that I am having increased signs of low testosterone, normal side effect of TC. Dr. Shabsigh orders more blood work and another CT Scan just to make sure.
August 22, 2011
Great news- CT Scan clean, but blood work does show low testosterone levels. Prescribed Androgel (the clear that Barry Bonds used, I will now be a MLB power hitter) and will put on daily. Informed Dr. Shabsigh of possible family history so more blood work and MRI of brain ordered. Need to rule out pituitary tumor. Can't wait to lay inside tube for 40 minutes, I am
already freaking out, requested medication and thankfully obliged
August 24, 2011
Waited all day for 3:15 brain MRI. I have to admit that my nerves were getting the best of me. An hour before the procedure I took the medicine (ADHD drug) to take the edge off and about 20 minutes in I could feel the effects. Of course they were running behind so I waited impatiently, but remaining calm. I am called back to get the IV started and the first comment from the Rad. Tech was "wow, you have broad shoulders. I am not sure you will fit in the tube." I explained that I am not fond of enclosed spaces and that I was medicated and that I wanted to give it a try. She also explained that a "helmet" would be put around my head and it would be snug. She suggested a towel over my eyes immediately so I would not see the contraption- I agreed. I was finally up and I got up on the table and they went to work to prepare me for the MRI. Ear plugs, towel over eyes, lots of clicking of "helmet", giant pads between the "helmet" and my ears, and then they shoved me into the MRI tube and stuck. They inform me to keep my arms straight and cross them over my body, "make yourself skinny". The "skinny" position was not for me!!! I attempted it and they shoved me in and kept saying get "skinny". I announced that I wanted out and there was no way I could do this. I could feel my chest cramping and I was only half way in the tube and then have to hold it for 40 minutes, No Way!! They pulled me out, undid all of the contraptions, unhooked the IV and I was out the door, doing the walk of shame to the car.
I call Kellie at Dr. Shabsigh's office and explained what happened and she ordered the MRI at OSU hospital, in a bigger, open unit. She also agrees to up the meds to Valium, I needed more of the edge taken off.
August 26, 2011
I arrive at OSU hospital at 7 am for the MRI. I took the Valium 30 minutes earlier and was feeling the effects, calm and sleepy. The check in process and workers were super nice and helped keep my nerves low, they were very understanding about my fears. I am taken back and the unit is visibly wider and shorter and everyone in the room is super nice. I get on the table and the process begins- ear plugs, towel for eyes, "helmet" assembled, padding between ears and helmet and then they push me in. I am not touching the sides and I feel no increase in my pulse rate- the Valium was working!! The "knocking" began and half way through I am pulled out and the IV is started, meds injected and then back into the tube. 20 minutes later I am pulled out and everything is dis-assembled and I am sent on my way. I never fell asleep and felt normal when walking out, just extra calm. Now the wait begins.
September 15, 2011
The MRI confirmed that I have a 2mm tumor on my pituitary gland (not the brain). So today I am being seen by Dr. Daniel Prevedello, NeuroSurgeon @ The Ohio State University. I arrive on the 10th floor of OSU Hospital's Doan Hall and I start wandering around. All I could see and find were patient rooms and offices. I went to a nurse station and stood patiently as 10 nurses ignored my presence. After a couple of minutes a Rehab Aide asked if I needed help and thankfully she directed me to the right area. There was no patient area, I was meeting Dr. Prevedello in his office.
I sit down and explain what all is going on with me. He uploads my brain MRI on his computer and he takes a look. I can confirm that there was a brain on the screen and it looked of normal size. He clicked through the frames and stated " I hate when they do this shit". I started chuckling, because my NeuroSurgeon talked like me. He was ticked about them marking the area where the tumor was located, it obstructed the view. The 2mm size is not of major concern and the lab results at this time do not show that it is active. He ordered more tests and I am to visit Dr. Ali (Endocrinologist) in a week to go over the results. If it shows the tumor is "juicing" (more chuckling) he will remove it, if not they will just watch it.
1 out of 5 people have pituitary tumors and greater than 99% are benign. To remove it they go through your nostrils, fun stuff!!! The good news is that we have a game plan, the bad news is I still don't have the answer to what is causing my low testosterone levels. Hopefully Dr. Ali will have the answer.
September 26, 2011
My visit to the Endocrinologist left me with more questions than answers. It was a very confusing appointment. I was expecting to walk out of the office with a better understanding of what was going on and a plan to deal with it. Unfortunately that was not the case. My lab work was not done on the same day or right time so I have to redo all of the blood tests, and wait 2 weeks to do so, as I need to be off the Androgel for an extended period of time. I did have some blood work done at the office which called for 5 vials of blood, a shot, 2 more vials 30 minutes later, and then wait another 30 minutes and 2 more vials taken. It is a very good thing that I don't mind needles or losing blood! My elbow looks like a heroin addict though. I am sure Dr. Ali is a fantastic doctor but I am left here to debate that maybe our personalities
are not a good match. We will have to wait and see as he told me he would see me back in 6 months for a follow-up??????
My last visit of 2011 with Dr. Shabsigh was today. Once again all clear!! Even better news was given as I will be down to 3 CT Scans this year and chest x-ray every 6 months. Original plan was this schedule to start after 3 years. Dr. Shabsigh has been spreading the word to his patients and physicians nationwide about tcare.org and the Endowment. His plans and ideas even exceed mine. Dr. Shabsigh is the man!
December 23, 2011
Met with Dr. Khwaja (OSU Endocrinologist) for a second opinion. First impression was very good. She is very thorough and even drew pictures to help me understand everything that is going on. She did order more blood work as she wants to see my numbers with Androgel. She cannot rule out that the pituitary tumor is active. The good news is that there is a medication to shrink it and with elimination my issues could resolve without daily medication. I left the office feeling confident that she understood my concerns and that there is a plan in place.
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