Madison's Long and Winding Medical Road

It began innocent enough at the beginning of the summer. Madison had a constant sinus infection. She could not get into see our regular doctor for more than a month because he was on vacation. In the meantime, she went to CentraCare 3 times and each time they gave her an antibiotic and said she had a sinus infection. Nothing seemed to help. She was also suffering from migraines. One Saturday I took her to the ER because the migraines were so bad. They said that since it had not been diagnosed by a neurologist then it was not a migraine but an acute headache. They gave her glorified Tylenol.

On July 17, she finally got into the regular doctor and he confirmed that it was a sinus infection. He also drew blood. Two days later, July 19, he called her and told her to get to his office immediately because he wanted to do the blood work again to confirm what he was seeing. If what he was seeing were true then she might have to go to the ER. I drove her to work that day, just in case. He called her phone buy I answered because she was in the middle of a haircut. We are voice twins on the phone so the doctor was none the wiser. He told her that her blood platelets were reading 6,000. The normal range is between 150,000-400,000. She was at risk for a "spontaneous bleed". When she finished the haircut, which seemed to be done in slow motion, I whisked her off to the ER.

After they ran their own blood work, which seemed to be in slow motion, they agreed that she needed a blood platelet transfusion. Having been an adult in 1986 at the onset of the AIDS outbreak and Ryan White dying from AIDS contracted from a blood transfusion, I was freaking out inside. The nurse assured that the blood was very clean and had been tested and retested. In her 20 year career, she had never heard of tainted blood. That put my mind at ease. I was thinking that would be the case.

They admitted her to the hospital that night for more tests. They couldn't release her until her blood platelets were in a safe zone.

I was supposed to leave for Iowa for my bike ride the next morning. I had been saving and training for this all year. I was tormented about what to do. I stayed with Madison all night. After much deliberation in my own head, I decided that I would take Jennifer to the airport and if I hadn't heard from the hematologist before the flight boarded then I would stay home. The nurse from the hematologist talked to me on the phone and said that she would be fine. No matter what, it would be a while before they diagnosed her. She was not in any imminent danger and there was nothing I could do. Madison gave me her blessing to go ahead and go. I knew that she would be fine because she had her dad and her grandparents and other family and friends.

She was in the hospital for 4 days. At the end of the stay they diagnosed her with ITP. You will have to google it. It is an auto-immune disorder.

She was also diagnosed with high blood pressure and being low in B-12.

She was put on steroids to bring her blood platelets up. The steroids made her insomnia worse. When it was time to lower the dosage, she went back to the hematologist and her platelets had crashed and she was in danger of needing another transfusion. He raised the steroid dose and that seemed to help.

She went to a neurologist to get her migraines diagnosed. On top of the migraines she also had tremors. Not good for a hair stylist because that means everyone gets a shag. One of her customers noticed that she was shaking. He asked if she had eaten yet that day. He was thinking it was low blood sugar. She just went with that answer so as not to alarm him.

The neurologist said that her steroid numbers were high and he wanted her to see an endocrinologist.  The regular doctor agreed and gave her a referral. The neurologist is also running an EMG on her. That will be tomorrow September 18.

Ok. I got ahead of myself. I said it was a long and winding road. On August 31, Madison woke me up and told me she had a really bad chest pain. I took her to the ER. Her blood levels that indicated a blood clot were elevated. They ran a CT scan and that is when they found a mass in her chest. It was in front of her heart on her thymus gland. You can google that, too. They said it could be a swollen gland or it could be lymphoma. After 8 hours, she was released from ER.

After a two day battle with the front desk of the doctor's office, she finally gets into see the endocrinologist. He diagnoses her with Graves Disease. Again, google. Actually, it wasn't much of a diagnosis. He said it could be three things. It definitely wasn't the other two so it must be Graves Disease. Yes, it is possible for someone to have multiple auto-immune disorders. Graves is an auto-immune disorder that creates hyperthyroidism. Guess what a side effect of the medicine for Graves Disease is? You're right! It lowers blood platelets!!! We decided she should start the medicine until she consulted with the hematologist.

In the meantime, another wind in the road, she had a PETscan done last Monday, September 10. Depending on the results from that they had scheduled a bone marrow biopsy for Friday, September 14. We understood that the PET scan would be the end all be all of diagnosis and its results would be confirmed with a bone marrow biopsy. We had our fingers crossed that the bone marrow biopsy would be cancelled. It wasn't. On a scale of 0-10, 0 being, "go home, you're fine, keep taking steroids, and 10 being. "You have lymphoma" Madison's was a 4.1. Which meant that the bone marrow biopsy would have to take place.

I was able to attend this appointment. He explained what he was going to do. He would try it twice and if he didn't feel good about it then she would have to go to the hospital to have it done. He tried it twice. She is now waiting for them to call to tell her when she will have to go to hospital to have it done. They will use a CT scan so they can actually see what they are doing and can see the bone.

He also said that the mass needed to be biopsied and because of the location it would have to be done by a thoracic surgeon. She is waiting on the phone call of when that will be done. This Friday, a panel of 20 doctors will meet to discuss her case. The regular doctor said she is a "medical marvel". The hematologist said she is "very mature for her age and a real trooper". He said usually he has to carry a box of tissues into the room when he is seeing a patient her age. Of course, as her mother, I know that she is more than a marvel and a trooper. She is absolutely amazing. She has really handled this better than I ever could. She has started a new job. She is basically self-employed because she pays booth rental. She has been dragging herself to work and working long hours. She hardly ever complains. Her medicines occupy a gallon sized ziploc bag. She is truly phenomenal.

I think I have covered all of the twists and turns. She could probably add more. It breaks my heart that I have not been able to go to all of her appointments. I feel blessed to have a job that offers me medical insurance for her. Luckily, her dad is unemployed right now and can go with her to appointments. For the really important ones, where a I think she will get results or the procedure will be difficult I am able to take off time. I am trying to save my hours because who knows how much longer it will be before we get results? And then what will the treatment plan be?

RAGBRAI summary

As part of my Summer of Rediscovery, I signed up to do a 471 mile bicycle ride across Iowa. I had many reasons for embarking on such an adventure, fitness, self-discovery, fun, friendships, to name a few. I have been home for several days and have been trying to process the whole ordeal and figure out what I have learned. The old Debbie would have beat herself up for making the rookie mistake of thinking she could ride the entire mileage. I would have felt like a failure. The ride was grueling. I felt beat down and defeated by the record-breaking heat (heat index of 114 degrees). I faced a myriad of other distractions including allergies, fatigue, dehydration, insomnia. I chose multiple ways to complete my journey. Sometimes I would get off the bike and walk alone, sometimes I walked with another biker, sometimes I drove the support truck, sometimes I took a vehicle to the next town. But you know what? The new Debbie says that it was my journey and my choices. I got to choose how to travel my journey. And it was enough. I am enough.

And next year, I’m gonna kick some butt and ride the whole way!

Fear

I leave for RAGBRAI this Friday. I have a lot of fears that I will be facing. What are they, you ask? Well, let me tell you.

1) Fear of the heat- the ride support is in service from 6am-6pm. I'm going to try and get an early start each day but not sure if I will be able to wake up. I am taking a camel pack, a bottle of water on my bike and I have a basket for extra water. I have sunscreen and sunglasses. I'm from Florida, for Pete's sake. I think I know how to deal with heat.
2) Fear of no support- I went on a bike ride in Winter Garden in April and the support packed up and left before I finished. No bueno.
3) Fear of support-My goal is to not use the SAG Wagon. That's a pretty name, right? I am sagging. Please come pick me up.
4) Fear of leaving my kids-I have never been away this long without at least one of my kids. I know they are practically grown, but...
5) Fear of leaving my house-We have always gone on staycations. never away from home much. Did I pay all of the bills? Will my house burn down? Will a hurricane hit?
6) Fear that my body will shut down-I have been doing strength training 2-3 times a week since mid-may. I have been doing cycle classes about twice a week. I'm still not in the best of shape, but it's too late now.
7) Fear of not getting enough sleep-we are camping every night. Seemed like a good idea at the time. Thursday night I am staying with my friend Ray. yay! Hot shower and a bed. And he promised to make me French toast for breakfast.
8) Fear that Jennifer and I won't be friends when this is over- We did the Winter Garden bike ride together. I didn't really care for her style of encouragement. She would tell me to "try a little harder." What? Try a little harder? I'm busting my arse here. She is 11 years younger, naturally athletic, her thighs are 6 feet long, she has a nicer bike....I've lived a fairly sedentary life until now, my thighs are 2 inches long and I'm riding a borrowed mountain bike. YOU try a little harder to shhhh...I told her that maybe we should not ride together. She could go on a ahead and wait for me. We'll discuss this more when we get there.
9) Fear that my arse will fall off- Not that that would be a bad thing but I am really worried about said body part. I've got padded shorts and balms but still afraid.
10) Fear of the unknown, fear of failure, fear of judgment-Good thing I have Jennifer with me since she has done this for more than 10 years. Everyone knows I am going on this ride, what if I fail. Will they say, " I knew you wouldn't make it"

Most of these fears are unfounded but they are still there. I am ready to face them. I got this.

DivorceCare and Greg

I am part of 2 divorce support groups. I joined the first one in a convoluted manner. I started chatting with a guy on Facebook. He was a friend of a friend but he made smart aleck remarks and I find that highly attractive. We bantered back and forth and then gave him my cell phone number and asked him if he wanted to be text buddies. We texted every day. We were in very similar situations as far as divorce goes. He lives in Missouri. One day he told me that he was going to go to a divorce support group and he told me I should look up the meetings and go. So I did. It is a national group called DivorceCare. They had a local meeting in Mt. Plymouth. I signed up but then when the day came I started talking myself out of going. Greg, my texting buddy, told me I better go...or else. I found the house. I drove past. There were no cars in the driveway. I went down the street. Turned around passed the house. Drove past. Texted Greg. Told him I wasn't going. He said, "You're going". So I did it. Got out of my car and went to the first meeting. There I found a roomful of people who were going through the exact same thing. There is a curriculum. We watched a video and then had a discussion. Some people shared their stories. I just sat and cried. I texted Greg and told him that I hated him because he made me go. He said, "You liked it and you're going back. You need to heal".

I finished the curriculum. I made it to as many nights as I could. The meetings were on Friday nights. The only nights I missed were when Jensen marched in the band at the football games. Greg would berate me for not going.

Btw, he went to two meetings and then quit. What a loser. He said he felt healthy after hearing the other women's story. And besides, he had a girlfriend already. We continued to text everyday. Giving each other advice. Me giving him more than he gave me because he is a numbskull. I told him that he needed to marry his girlfriend. He did in January of this year. They are living happily ever after. I don't text him as much as I used to. Maybe every other week. I still give him marriage and relationship advice. I don't think he likes it much because I'm usually on his wife's side. I hope to meet them in person when I go for my bike ride across Iowa.

Uranus

I have two students in my office. One is a good reader so she is taking her test by herself (Student A). The other student is not a strong reader so I am helping him read (Student B). He reads a paragraph then I read a paragraph. The chapter topic is: Planets. It is my turn to read. I come across the word Uranus. I'm fairly certain that it is now correctly pronounced U-ruh-nus yet I still ask, "How does your teacher pronounce it? U-ruh-nus?"

Student A: "Yes, U-ruh-nus. Some kids say Ur-anus. They are so immature"

Me: "Yeah! So immature."

Meanwhile Student B is reading and say "Ur-anus".

Me: Giggling to myself.

Why is that always funny to me? It's my arrested development at the age of 12.

Summer of Rediscovery

The winter of my discontent has passed. How do I know you ask? Is it because the calendar reads "April"? Is it because like the silk worm I spun a chrysalis and am now emerging as a beautiful butterfly? No, the winter of my discontent is over because Adele can no longer make me cry! That's right, her songs no longer apply. I am on the mend.

I'm going to skip right over spring because I don't have a catchy phrase for it but this summer is going to be my Summer of Rediscovery! I stole this from an acquaintance, a guy from my support group. All of the divorce self-help tells one to spend time discovering who they are, do things you have never done, do things you used to do when you were single. So I signed up for a 471-mile bike ride across Iowa! I know, crazy right? What was I thinking? Peer pressure?

My friend, Jennifer Bacon, is from Iowa and has ridden in RAGBRAI (the Register's Annual Great Bike Ride Across Iowa) for 10 years. I followed her on facebook the first year I met her when she was riding. I thought it sounded fun but impossible. I told her I wanted to go with her this year. I was kind of kidding, not really, but maybe. I thought, "I'll say I want to go but not follow through." But she wouldn't let me. She called me up when plane ticket prices started rising. She turned on the pressure. "We have to get them now, before the priced go up." I tried to whine and say I didn't have the money and what will Jensen do? And I will die...She wouldn't accept any of my lame-o excuses. Her counter was, "You need to do this for you! It is a stress reliever (really? 471 miles? on a bike?) And it is sooooo much fun. You will love my friends that I ride with and they will love you. And one of my friends is cute and he's your age. " Always, the perky cheerleader. So I caved.

I bought the plane ticket and thought, "I'll buy the ticket and I can always just go visit some new friends that I have made that are from Iowa." And I could check out the cute guy :)

And then deadline for RAGBRAI came around. I had to commit. More money...now I can't get out of this. So this summer...July 21-29, I will have my big fanny on a little bike riding across Iowa. (which is not flat, contrary to popular belief!) 7 days, 471 miles, sleeping in a tent at night.

That guy dang well better be cute! and rich!!!

Modern Hero

I didn't get a current picture when we had dinner in Orlando. *kicking self*



This is my friend Liz. I met Liz at BYU. (I’m gonna say BYU and not BYU-Provo because there was only one BYU). My roommate Jacque, also from Florida, came home one day and said, “There is an apartment full of girls from Florida!” I knew that I must meet them because, hey, people from Florida are awesome. There were indeed 3 girls from Apartment 4 that were from Florida, and one from Indiana. We became fast friends. One of the girls had attended FSU for her undergraduate degree. While there, she was in a sorority. They came up with the notion that BYU should have sororities. So without acknowledgment from the administration of BYU, Gamma Nu was formed. Jacque and I were the fourth and fifth charter members. And as with all sororities, we participated in Rush Week. I’m not sure everything that it involved. I’m sure I have blocked the events from my memory because they involved self-humiliation. I do remember doing push-ups in front of the Harold B. Lee Library.

Liz and I had many adventures together. I remember driving my VW bug to Salt Lake City because she and Sandy were buying motorcycles. They drove the motorcycles home. Liz later wrecked hers. I don’t remember a lot of details but I’m pretty sure that was the end of her need to ride a motorcycle. As you can see she survived.

Liz was a music composition major. I remember going down into the catacombs of the Harris Fine Arts Center and watching and listening as she composed music. I remember thinking, “How does she do that? How does she know what comes next?” I’m still in awe. She taught me that the hardest part of a song is the ending. If a song ends in a fade out then the person took the easy way out because he/she couldn’t think of an ending.

Liz graduated from BYU in a timely manner, unlike some of us. I remember her first job was directing a Catholic choir in California. Oh the irony! It made me laugh then and it makes me laugh now.

Meanwhile, back at the ranch, or apartment, Jacque and I get a roommate that…um…(to be Christ-like) we didn’t care for. We must have voiced our disdain quite a bit. We did. I really liked her brother and sister, but not her. It might have been the way she looked down her nose at me. Not sure, but probably.

Meanwhile, back in California, Liz gets a mission call to Nova Scotia.

Meanwhile, back in Provo, the roommate that I don’t care for gets a mission call to Nova Scotia.
Fast forward to Liz and Monica become mission companions. Small world, right? Liz got to know Monica on a deeper, more spiritual level and to this day she swears she is a nice person. Ok, we’ll just leave it at that.

Liz and I lost contact until one day when Facebook was invented. Yes, this becomes one of those miraculous reunions brought about by Facebook. Although, I think Liz and I are eternal friends and would have found a way to reconnect through snail mail.

Actually, I saw Liz for the first time in years when she was featured in the Ensign. Yes, that’s right! I’m so proud to call her my friend. She is using her life to do what we all dreamed of doing when we were young and unjaded. When she prays for World Peace, she actually does something about it. She brings peace to the children left orphaned in war torn countries. She founded a nonprofit organization, The Shropshire Music Foundation. You can read her story here. Please feel inclined to make a donation. I can testify that Liz lives like a pauper and that all of the money goes to the effort. She recently formed a Board of Directors to oversee the details and they forced her to take a minimal salary. (very minimal, less than a fast food worker minimal).

So why this tribute to my friend? In February, Liz was in Florida for a few days and we were able to have dinner together. Liz is the type of friend that I feel like we picked up where we left off. We will always have fun. It was not near enough time to visit but I know there will be more. If we could spend more time together I’m sure that we could solve all of the problems of this world. We have very similar beliefs…besides church. I love you, Liz!