Nobody…

1849-Safety pins were patented by Walter Hunt

1912-RMS Titanic sets sail from Southhampton for her maiden and final voyage

1925-Scribners publishes “The Great Gatsby” by F Scott Fitzgerald

1970-Paul McCartney officially announce the split of the Beatles

Many monumental things have happened around the world on April 10th but of course there are too many for me to list here and you would get bored reading them all. I tried to pull out a few that might be big enough events that people remembered them. How many of us use safety pins or have read “The Great Gatsby?” I imagine most all of us were not here when Titanic went down but we all know what people are talking about just like the Beatles splitting up.

I am a nobody and I had a nobody family. My husband and daughters were nobodies. We were not a TV icon or major recording group. In my little world of being a nobody something major and life changing happened on April 10th. It would change my nobody world forever. April 10th set off a series of events that would drastically change my nobody life and world into something I never wanted.

“April 10, 2008, began like any other day except I woke up very early. Little did I know that today would be one of the longest days of my life. I thought I knew in my mind what the afternoon held for Heather and me. It was our first visit to see Dr. Fastenberg, and I was prepared for him to tell us that he didn’t know exactly what kind of cancer she had and more testing was needed. Then he would give us a testing schedule for a bone marrow biopsy, possibly the removal of a lymph node, CT scan, MRI, and more blood work. I told everyone we would not really know much and even told Bill to go to work. There was no need for him to come with us because it never happened that you can get a full diagnosis from a needle biopsy.”

“Dr. Fastenberg looked right at Heather and me as he told us that as of this moment, she was in a fight for her life. She was no longer a student or worked a job; she had to check out of her life until treatments were over. The world for me began to spin, and I felt I could not get air into my lungs. He had given her the diagnosis of stage 4 non-Hodgkin’s T-cell lymphoblastic lymphoma (LBL) or acute lymphoblastic leukemia (ALL). It did not matter whether she had leukemia or lymphoma because they both are very aggressive, fast-moving cancers and the treatment was the same. She was in very serious condition and needed treatments to begin as soon as possible. He asked me when we could check into the hospital, and I sneered as I told him maybe Monday would be good. This was Thursday and that would give us the weekend to get things in order. He looked right at me and told me it could not wait; she needed to be admitted tonight, right away, this could not wait any longer. Heather was in shock and did not hear anything after he said aggressive, fast-moving cancer; she just sat sobbing. I sat listening as I began to have tunnel vision; there was ringing in my ears. Did someone suck all the oxygen out of the room? Were the lights going out? Could I be passing out from shock? I could hear Dr. Fastenberg talking, and I was trying desperately to stay conscious and comprehend what he was saying—four rounds, eight parts, eight spinal chemos, six months, blood transfusions, long hospital stays, blood levels, remission, bone marrow transplant, aggressive, maintenance for two years— and on and on with words and terms I had never dreamed of before.” From my book, My Porcelain Doll

April 10th forever became known as cancer diagnosis day and it changed my innocent nobody world. April 10th began the kick off point to something I never imagined would happen to me in my lifetime. My nobody daughter had cancer and not just any cancer, very aggressive cancer. I had prepared myself that day that Heather was going to die, she was that sick. April 10th when Heather and I moved into the hospital for the next 8 days, we planned all sorts of things; we wanted to write a book, plan events to celebrate and end this cancer and never look back.

We know that cancer went into remission and didn’t come back. Our nobody family had several fun events like meeting Amy Grant, the Grand Survivor Ball, Disneyland for her 21st and the birth of baby Snooks-Violet. We nobodies thought life was really good. I had no clue that we would spend the 1st anniversary of cancer diagnosis in ICU with Heather fighting for her life.

My nobody life would soon become one of dealing with intolerance, pettiness and down right rudeness. I have written 2 books, have a Facebook page with almost 3300 followers that are grieving too, and have become very outspoken against stupid people towards grieving mothers. I was a nobody but I am forever Heather’s Momy and I will never allow her memory to die to make her a nobody.

Boat Rides and Cupcakes…

Bill and so left on Wednesday to fly to Orlando to begin Princess weekend. Prior to the img_2869race I had found a ring that I wanted to commentate my accomplishment of the half marathon. At the time it was purchased the description seemed perfect-“give her the Royal treatment with this queenly ring.” I loved the diamonds and sapphires but soon learned that diamond is the traditional gift for the 10th anniversary while blue sapphires are the modern gift. WOW! Really? It was perfect on all counts.

We arrived at Old Key West, our resort for the weekend. We got a two bedroom so Scott and Shannon could stay with us. Absolutely fell in love with this resort. So peaceful and different. You would never know you were in WDW property staying here. The best was the slow boat ride to Disney Springs. Just relaxing and stress free.

Thursday was heading to Hollywood Studios for a portion of the day and then going to the Expo to get bibs and sing the waivers. The Expo has some great items but I guess since I won’t be running anymore it didn’t hold much for me. I managed to get the pandora charm for the PHM plus a couple of princess otter box classes for my phone. I preordered my race jacket, magnets, pins and commutative Minnie statue so it was very easy for me to get my stuff.img_6645Our friend Bob came to join us Thursday night and then Nancy, his wife, would come Friday night. Bob picked us up from the Expo and then we went to dinner at Blaze Pizza. We asked all over Disney Springs but no one there knew about Unicorn Cupcakes. Now this was a mission. It was great fun just being carefree and enjoying nice weather and friends.img_2250Friday was Magic Kingdom and the hunt for rose gold unicorn cupcakes. We found them at the Grand Floridian and it was fantastic. I decided instead of drinking my way to the finish line I would cupcake my way there. It was much more delicious since I am not supposed to drink alcohol. We rode all the rides that I wanted to do such as Peter Pan, Small World, Pirates and Haunted. Of course I love love love the Carousal of Progress.img_6644-1

 

I was getting tired and the next morning was an early morning for the Children’s Miracle Network Breakfast. I could not believe al the signs that were all over making sure I knew that Heather was there with me and was doing what I set out to accomplish.

Getting Ready…

The days and weeks flew by and I had several things happening at once; my first appointment with a Rheumatologist and my first and only half marathon. My first doctor visit with Dr Pace went well. Of course there were a battery of blood tests and X-rays I needed to have done. She believed me to have psoriatic arthritis and the next appointment would be in 6 weeks or after the PHM. I did all the tests right away as to get results back in time for my appointment.

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my right hip getting the injection. See the top where there is no cartilage?

The first drug of choice is Methotrexate to treat PsA. This bring terror to my heart as this is the drug that damaged Heather’s lung beyond repair. I have lots of mixed feelings about taking this drug. While I know this is a much lower dose than Heather had, she did have a weekly dose of pills she had to take. So I had an RX bottle of Methotrexate on the cabinet during her treatments. I really have to think long as hard about going on this drug. However the other drugs are biologics and they can cause lymphoma. WOW! figures I get the autoimmune disease that requires such drugs to stop hurting all the time and prevent further joint damage.

As for the Princess Half Marathon I was getting very discouraged since I had not been training or walking any distances at all. I had decided that I was okay if I got swept by not keeping my speed up. I just wanted to make it thru the castle at Magic Kingdom and then I would be okay that I gave it my best. I was not expecting a health/life changing diagnosis in the middle of all this. Because of the hip injection and physical therapy I was actually walking without pain or limping. I had gotten so used to limping from the pain, that it took me a few weeks to walk normally.

I had changed my costume from being Aurora to Baymax from Big Hero 6. I put Baymax on the back along with the words “I am not fast…” The weather in Florida was going to be unseasonable warm which worked for me. My bones needed the warmer weather for the 3:30 am line up to the corrals. Everything seemed to be falling into place. I was ready after a year long planning to do and do my best. I was okay with the fact that if I didn’t finish I was okay with that as I was pushing my body and joints beyond what they could do.

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The course I would be walking for the Princess Half marathon

Lets go get this weekend started and honor Heather…

Wrong Diagnosis…

In the summer of 2015 I was diagnosed with Fibromyalgia and thought I had finally figures out with the pain and fatigue was. Several times of the last years I have raised concerns with my doctor over what appeared to be fluid around the joint closest to my finger nails. It began with one finger and then two fingers. My doctor did not seem concerned nor did he wish to do any more testing to find out if something else was going on.

Jump to my training for the Princess Half Marathon and I was doing great. I was running three days a week for about 13 miles. I was really doing very well and was keeping my miles at about 12:30-13:30 minutes per mile from beginning to end. The end of April I ran and I hurt. I thought okay, I have hip flexor muscles that are acting up. I began seeing a chiropractor, getting massages, stretching and foam rolling but this didn’t seem to change anything. I could run about 2-3 miles and then I would hurt so badly on my right hip i would barely be able to walk home. I had X-rays and nothing showed up so I decided to take about 16 weeks off from running to allow the muscles to heal.

I did not get any better, if anything I got worse and began walking with a limp. I began doing more research and had more X-rays done. I was very discouraged and knew I had to finish the 13.1 miles I had signed up to do. This was not just for me but for Heather too. This was my way of symbolically honoring her 10 years since Leukemia/Lymphoma entered our world. I had tried to walk the 3-Day for breast cancer and only got 47 of the 60 miles before I could not finish. To my defense I had a stress fracture on my foot that I got the first day and continued to walk for 2 more days. But I had something to prove to myself.

I felt some better and I decided to try running again in December. I could run 2 miles and no problem, but shut the front door at running 4 miles. I couldn’t do it and I was so discouraged. I just wanted to cry. I had the biggest event I had planned for, with friends coming to run with me and I couldn’t train, I couldn’t walk let alone run. I couldn’t let myself, Heather, my family and friends down. I had also fund raised to be the top fundraiser with $4,577.00 going to Arizona Children’s Miracle Network. I just HAD to finish those 13.1 miles.

I decided that I needed to see an orthopedic doctor and not a sport’s medicine doctor. I made the appointment for the first week in January. I figured that I get to see him, possibly a hip injection and be good to go. I went into the appointment very optimistic. I never dreamed he would tell me what he was going to tell me. My right hip had severe joint damage and degeneration of the cartilage. My running days were over. He did tell me I would not damage myself more if I ran the Half but it would be better if I walked those miles.

WOW! I was not prepared for that. Now what do I have. Based on my history, my right hip and the joints on my fingers I have Psoriatic Arthritis. GREAT! So thrilled. I rounded out the week with going to physical therapy and getting a hip injection of kenalog. I also needed to get in with a Rheumatologist to get on medications to slow and hopefully stop any further joint damage. I was angry that my regular doctor misdiagnosed me and I could have prevented the joint damage if he had taken me seriously.

I hit the genetic auto immune cesspool from both parents. My birth mother, Jane, had psoriasis and also alopecia, which is a huge auto immune disease. My birth father, Harry, had horrible psoriasis and restless legs. I have had psoriasis since I was a baby. PsA, Psoriatic Arthritis, also mimics many if not most all the symptoms of Fibromyalgia, from sleeplessness, to restless legs to fatigue etc.

I began to process all that I had learned and I began to wonder could I begin training some so that I could walk those 13.1 miles. I felt I had let my running partners, Scott and Shannon down as I would have to walk the whole thing now. Scott and Shannon both said we start together and we end together, that they would walk with me. Not to build up strength to be able to wake for 3 plus hours solid. I have learned there is nothing I can’t do one I put my mind to it. My sheer determination and will. I had something to prove to myself and this just made it so much harder to do…

Two Days Left…

What would you do if you woke up this morning and you had two days left, what would you do? Spend that time with loved ones? Maybe take a quick trip somewhere? Do something you have always wanted to do?

In 2009, I had no earthly idea that after getting out of the hospital on March 16, that Heather would have 2 full days left before she entered the hospital again for the final time. We had just been in the hospital overnight with tons of tests had been run and nothing showed out of the ordinary.

Heather was in classes but she didn’t feel like going. She was tired and really still not breathing well. Bill had not quite finished his first year at Microchip; Jenn was working at Michael’s and Wendy was here with baby Snooks (Violet). Heather pretty much stayed close to home those two days. I made a huge meal of homemade meatloaf with all the trimmings including homemade rolls and Heather was thrilled to be at home for dinner and able to eat. I never dreamed that would be the last meal I ever made for her.

We did nothing special except Heather held a sleeping tiny baby Snooks that was 5 weeks old. She took some selfies of her and Snooks that we found on her phone later. I look back over those days and think “if I had only known.” we fell under the false sense of security that the tests since they showed nothing everything was alright. But we should have known that nothing about Heather’s cancer, diagnosis or treatment was normal.

March 19th I woke to find Heather on the couch with a high fever of 104.5. I panicked as I knew this was no good at all. Dr. Fastenberg did not believe me that her fever was so high and wanted us at the office immediately. Dr. F didn’t like what he saw and told us to go to the ER immediately but it would be about a 4 hours wait. On the way to Banner Baywood (about a mile from the doctor’s office) I called Gayle, clinical manager for 6 South. we waited maybe 10 minutes in the ER before Gayle came to get us and within 20 minutes Heather had a room.

While I know I should be thankful for the time I had with Heather, however those 33 days between March 19 to April 20, I would give them back. Every last one of them. I have horrors of images that no parent should ever have of their daughter.

The 10th anniversary of cancer is actually the ending of year 10 and the beginning of year 11. Same goes with her death. April 20 will be the ending of the 9th year and the beginning of the 10th. This year is the 10th Easter without her (being in a drug induced coma doesn’t count) the 10th summer, my 10th Mother’s Day etc. I have no idea where 10 years have gone. In the beginning I couldn’t imagine one year let alone 5 years and now 10 years. For the 2nd anniversary I crocheted 24 small bunnies a way to heal my heart. Then for the 5th anniversary I crocheted 6 daisy flower afghans. SO for the 10th anniversary I am crocheting 10 Comfort Shawls to give away. Somehow this makes me feels better if that is possible.