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.

Social Media…

Social media has become the greatest way to find long lost friends or family, missing people or pets and gain support for people going thru horrible trials. It has also become a place where feeling get hurt, comments get misunderstood; people get deleted and blocked in a routine manner. Some find the strength to hide behind their social media account to say whatever they feel like, be rude or down right disgusting. But for the most part, it is a great tool to see friends on vacation or wedding and graduations that are too far for you to attend. It can announce the birth of a new baby or the death of a beloved parent. It can also bring up a past event that aren’t so nice.

This morning as I was looking thru the new feed of my social media, I came across a friend who had tagged someone in a post. Normally, no big deal but this name sent me back to 1975 to something that happened to me that I don’t think about often. I was transported back instantly to what happened.

The entire buzz in the news are the women coming forward to claim sexual harassment, abuse or rape in years past. Many have asked why now? Why didn’t they report it when it happened? I am here to say; it isn’t that easy or simple. The hardest thing you can do is to stand up to your abuser.

I personally am a victim of several different men or teen boys thinking it was okay to sexually abuse me. My first abuser was my babysitter’s husband. He abused all the girls there. I can say with absolute certainty this man was a sexual pedophile. He picked the innocent girls his wife brought to their home to watch for their parents. I don’t know if his wife knew but I have to think she did and just looked the other way. A portion of me wonders how many girls he abused. I also wonder if he ever got caught or apologized for his actions. An apology does not erase what happened but it goes a small way to help.

After Jo Beth (my adopted mother) died in 1975 my Daddy, finally being a free man, began to date many women. One such woman had four kids roughly around my age. The only thing that this woman was interested in was having sex with my dad. So, of course all us kids had to go outside and play or do something. The very first home visit with these people found all us kids going to the drive-in movies to get us out of the trailer. This was the first time that the high school boy began to molest me.

This began a several month nightmare for me. I was 9 years old and my daddy wasn’t thrilled about leaving me at home alone. I tried to find other places to go besides going there, but because she had kids he didn’t understand why I didn’t want to go. When we were forced to go outside, this guy took me to an abandoned trailer that had a dirty mattress on the floor. There is no telling how many other people used that for sexual purposes. I would cry and he would tell me, be a big girl and take it. He also told me I couldn’t tell my dad because he would hate me. My dad was all I had. This was the abusers way to use his words to keep his victims quiet.

The last few weeks as I endured this abuse this teen decided to let his friend from the trailer park join us. Then they both took their turns with me. I can remember saying yes to all their questions and just wanting to go away. These teen boys would make me go to the trailer by telling me they would tell my dad what a dirty little girl I was and that I asked them to do things to me. Being young and naïve, I believed them and I would go with them. I never said no, don’t or stop it. I never told anyone that could have helped me. I never told my dad either.

Just a suddenly began it all ended. The teen boys got in trouble and one was sent to military school and then other boy was sent away. Shortly after this event my dad broke up with the lady. My abuse stopped and was over as fast as it had begun. I never had the opportunity to confront these boy or men and tell them they had no right to do that to me. I never stood up for myself.

I did have the opportunity to stand up to my birth father when he blatantly tried to have sex with me and flat out would not take no for an answer. I was able to tell him he was horrible and he had no right to do that to me. Being able to confront him as my abuser was hard but it felt very good and was very freeing.

So, why this story of abuse now, well the name that was tagged was on of the teen boys who thought it was okay to molest me. I looked at his profile and couldn’t really see much and I am not sure what I wanted to find. I messaged my friend and asked how she knew this man. We exchanged several messages and she admitted he was a troubled teen but had changed when he grew up. I am not sure if this helps or not. He was married and raised daughters by himself. I wonder if he has regrets about what he did to me. Suddenly a past traumatic event slapped me right in the face. I remembered the smells and sounds and that dirty mattress. I am a 52 yr old woman that suddenly felt sick to my stomach, panicked and disgusted.

I want the world to know that just because I did not come forward being a 9 year old little girl, doesn’t mean it didn’t happen. It doesn’t mean it is okay. It doesn’t mean it doesn’t still affect me. I don’t give the men of my past power over me anymore. If I were to see them in person, I would get some answers for sure. I at least deserve an apology

“I am not what happened to me, I am what I choose to become.” ~C.G. Jung

A Man Remembered…

When you are born, as a helpless infant you are relying on an adult of some kind to take care of you. This would be the prefect picture for every baby born into the world, but sadly, it isn’t true for all babies.

There was a man born October 17, 1930 in Texas, and the exact location I have no clue about. He didn’t know much about his mother and father only that he and his younger sister were left on the railroad tracks to die when he was about 4 yrs old.

Once picked up by police or someone he was taken and placed for adoption never to see his younger sister again. This little boy was very sickly, had poor coloring and was deemed not adoptable. In walked Mault and Anné Blake. They saw past the illness, decided to adopt him and gave him the name Jimmy Johnson Blake.

Jimmy was given over to his Grandmother named Bunny; as Bunny could heal anyone. Very quickly Jimmy began to thrive but his stomach began to swell. He has tests and it was determined that he had rickets and needed to have his gall bladder out. It was touch and go for about 6 months because of infections but he recovered. After this he did well till playing sports of some kind he broke both ankles. Jim was told he would never walk again. But he once again surprised the doctors and did.

Mault, Jim’s dad, ran a tailoring business. Just imagine being the sickly kid who’s father sews, presses and repairs clothing. The kids were just as cruel in the 40’s are they are today. Jim helped his dad in Blake’s Tailoring shop after school and weekends. One afternoon, when Jim was in high school, his dad came home to have lunch and nap before going back to work and never woke up. Jim dropped out of high school to try to work the business but he was not able to do that. After the business failed Jim enlisted in the Navy to get his college paid for.

While in the Navy, Jim, traveled overseas and saw many amazing things. He also did some drinking and partying like many men do once they get overseas. He got both his arms tattooed and then hated them for the rest of his life. As they got older, they turned green since the ink was not the best quality. A life altering event involved drinking with three friends and they were all involved in a car accident. The other guys left Jim in the car supposedly to go get help. Jim was in bad shape as he had gone thru the front window with his head and back. He waited for an hour and then began to walk to find help. When he reached medical attention they told him they needed to stitch his face wounds right away as the time limit was close at hand for infection. This event left him with a large bump of skin sewn back to his nose that would always be a reminder of what happened.

Shortly after this event, Jim left the Navy and began his college career at SulRose University in Texas. He graduated with a BS in education. Somewhere along the way he met a woman name JoBeth Taylor. I am not sure they loved each other, but they got married. JoBeth came from a well to do family and my honest opinion is her parents pushed the wedding.

In December 1965, Jim and JoBeth, adopted a baby girl. This was more the prompting of Jim more than JoBeth to have a baby. JoBeth was not attentive to the baby so Jim became the sole caregiver and the baby girl really developed a deep love and close bond with her daddy. In 1975, JoBeth died and left Jim with the daughter. This was a time of closeness between father and daughter and they grew even closer. Jim being adopted seemed to understand his daughter very much. He had the mind set that his daughter was her own person and she had a good head on her shoulders. Jim loved her but allowed her to be herself.jo beth Jim became a Grampaw in March, 1986 and again in December, 1987. He loved these girls with all his heart. Even thought the daughter lived far away, if events happened during the day she would call Jim quickly just to share. It seemed that moving into adult stages had not changed the bind that they had.

January, 1990, Jim became very ill and had to be hospitalized. His daughter knew this was serious as he vowed he would never go to the local hospital there. As Jim became more ill he was placed on a vent to allow his body and lungs to repair and heal. The daughter being pregnant with a third baby was not able to just travel down and stay indefinitely. The daughter knew things were not going good.

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Monday, January 15th, 1990 began as normal day but that would soon change. The daughter decided that the family needed to go her dad and Monday she was making plans to leave the following day. The daughter received a call from her mother in law “just to chat” which seemed weird. She began to panic and she tried to call the hospital to speak to her step mother to find out what was happening. There was a glitch with the phone system and no long distance calls could be connected. When the call was finally connected Jim’s daughter received the news she never expected to hear; she needed to get there quickly or it would be too late.

The daughter packed up her family and they began the long snowy drive from Colorado Springs to Farmington. The snow storm was covering the entire front range and most of the state of Colorado. They hit Wolf Creek Pass after dark and began the slow drive up and over, not realizing the pass had been closed on on side while they were on the top of the mountain. Coming into Pagosa Springs they hit solid ice on the road that had a deer on it. Fortunately the deer moved on before they had to make a decision with the blazer.

Shortly after the deer the daughter was laying down in the back seat with her two daughters when she realized that more than likely she would not make it home to say goodbye to Jim. At that moment, in the ICU at San Juan Regional Medical Center, Jim died. The only person in the girls life who ever loved her totally and unconditionally was not gone. The one who had her past, her childhood and should have shared many happy years with her daughters was just suddenly gone.

This man I speak of is my daddy, Jim and I am his beloved daughter. For many many years I have grieved for my daddy. He had missed out on so much of my life and I should never have been orphaned at 24 yrs old. As big of a loss as this was, the death of my daughter, Heather way outweighs this loss. I do think about my daddy but nothing like Heather. I know that Jim was waiting for her when she reached glory and I cannot wait till I see the both of them someday.IMG_1372Today, Monday January 15th, 2018 is Martin Luther King Day just like it was in 1990. This year the thoughts are real and vivid and I have missed my daddy very much for the last 28 years.

Understanding…

There is so much to Heather’s cancer journey that try as I might I cannot relate as to how she felt. This week leading up to my fluoroscope intra-articular injection has been an eye opener for me as to some of the feelings Heather might have had. This was not a normal injection as it had to be done in radiology to make sure the meds got into the physical joint.

The days leading up to this appointment was constantly in the back of my mind, wondering what it feels like, how much it would hurt and would it really work the way it should. The day of the injection I have many emotions and feelings as to how Heather felt knowing she was going in for a spinal chemo. Now, I was the one being taken in to have a procedure done. I was on the other side; instead of being the driver I was the patient. The hours ticked by and all too soon it was time to leave. How many times did I take Heather back to the hospital for chemo, spinal chemo and blood products? The memories of that came rushing back.

The waiting in the lobby of the center was torture. Of course the 30-minute check in early means you get to wait longer. The wait time was longer than expected and I ended up waiting an extra 15 minutes. While sitting in the waiting room I was transported back to waiting at Dr. Fastenberg for that first appointment to know what the diagnosis was. The countless hours waiting were horrible for me but now I had a small taste of what waiting meant for Heather.

My name was called and I got up and walked back into the radiology room. How many time I been in a room just like this with Heather for her spinal chemos. It was all to familiar. I began to understand how much comfort it must have brought to Heather to have Dr Chris and nurse Jan there each time she did a spinal chemo. The knowing that the same people were with her each time and they knew her had to be so soothing to her to endure such a horrible procedure.IMG_4468The ladies who did my procedure were very understanding and patient with my PTSD and me. They explained everything and kept asking me if I was okay. It gave me a huge sense of relief that they were patient and understanding towards me. Bill was able to be in the room with me up till they began and then he had to go behind the lead wall. This was comforting to me as well. It had to have been the same for Heather as she knew mom was right behind the wall each time she had a spinal chemo. While I was not receiving some horrible chemo it was a huge deal to me. Not the injection itself but the memories it brought up.

I am to take it easy for several days but so far the pain seems to be subsiding. I was able to sleep with very little pain last night for the first time in months. Today the actual injection site aches but the pain in my hip seems to be going away.IMG_4469What seems ordinary to most; to a grieving mother who helped her daughter thru cancer nothing is that simple. Bill told me on the way to the center that no mother ever did as much for her child as I did for Heather. I would never have been anywhere else. I fought tooth and nail and I would do it again. Simple things to the world bring up memories and PTSD and thoughts of my beautiful baby girl fighting for her life.

Here is to pain free walking so I can complete the Princess Half marathon to mark the 10th anniversary of cancer. I am okay with being swept as I have done everything in my power to make this happen. I did not expect the hip and the diagnosis I got last week. For me the journey has been getting to the race and the cherry will be to cross the finish line.

IMAGE: Dr Fastenberg and nurse Jan getting Heather prepped for her spinal chemo in radiology 

Let’s Begin with PTSD…

Heather’s 30th birthday came, went and I was not sure how I felt about that. Then, 15 days later we had a very different sort of Christmas with more family missing. Just as I think I am doing okay the New Year hits. For many people it is just a New Year to try to do better than they did the year before. To some it is a milestone year such as a wedding, new baby or graduation. The New Year of 2018 means here I am starring down the 10th anniversary of Heather’s cancer diagnosis. I really don’t know how or what to think.

I decided to train and run a half marathon at Walt Disney World in February to mark the 10th Anniversary. I set out to fund raise for Children’s Miracle Network for $1200 and managed to raise $4500. I am very proud of my accomplishment for CMN.

During my training I was running 7-8 miles on my long run pretty consistently when I developed right hip pain. I tried to rest and stretch and then I ran the Tinkerbell 10K in May with little problems but overdid it walking after the race. I have spent the last 8 months going to the chiropractor, getting massages, stretching, foam rolling, heat and many other different things at home. The pain was getting worse and currently I walk with a limp and many days I can barely walk.

So enter the orthopedic doctor to help me figure out what is wrong. Going into that appointment I figured he would tell me to stretch, do physical therapy and get an injection to reduce inflammation. Well some of that happened but I was completely knocked off my feet with what he found. I was given the life altering diagnosis; that more than likely, psoriatic arthritis has damaged my right hip joint to the point I will require a hip replacement. I would be scheduled with physical therapy to strengthen the muscle around the hip to support it more, a order for a fluoroscope hip joint injection and I needed to find a rheumatologist. My career of running is over, period and I need to find low hip impact exercise to do such as biking, elliptical or swimming.

I left the office in shock and disbelief. When I got into my truck I began to cry. I never dreamed I would have one autoimmune disorder let alone two plus need hip replacement surgery sooner rather than later. I began to feel some of what Heather felt when she got her cancer diagnosis of “this is so unfair.” I have tried to do everything right, I am at a good weight, I exercise, don’t smoke or drink so how can I have these life altering things going on.

The weekend was filled with research, as I do not go into anything uninformed. I want to know about medications to treat PsA (psoriatic arthritis) and the possible side effects. The leading beginning drug of choice is Methotrexate (MTX)!! The drug that saved Heather’s life but also damaged her lungs beyond repair and ended in her death. So, do I take this drug and chance it? Would it affect me the same way? How would I feel to have a bottle of MTX on my counter? Most all the biologic drugs can cause lymphoma, so do I risk that with my family history? There are two I have found that do not have hideous side effects but I am not sure how the rheumatologist will feel about my research. I do want to do something to slow down the progression of the hip damage to put off hip surgery as long as possible.

Fibro and PsA have many of the same symptoms so do I have both or did I only have psoriatic arthritis and that has been let go for years now. I have no idea and I am not dealing very well with the idea I am physically not able to do the thing that I want to right now without severe pain. I want the pain to go away and be able to at least walk.

My intra-articular injection is set for Thursday, Jan 11. This may sound simple to most, but to me I am sent back to thinking about Heather’s bone marrow biopsy. She was on her side, numbed up and then the procedure was done. (Leave it right there and not describe the rest of the horror with the procedure) I will be on my side, numbed up and then the needle will be placed, a dye will be injected to make sure they are in the right spot before placing the actual drugs. This is being done in radiology just like Heather had spinal chemo done in radiology. I am nervous about this already without adding the PTSD that goes along with it. This is not an easy simple thing to do for me.

As for my Princess Half Marathon coming February 25th. The ortho doctor gave me permission to run the race but preferred I walk it. He understood this was something I really had to do. I am hoping the injection allows me to do some walk training. My dear, good, bestest friends Scott and Shannon have told me they will walk with me and not leave me. We have a new plan to the race now as runDisney celebrates the last runner to cross the line we have decided we will try to make the spot no one wants in last place. For me all I want to do is cross the finish line. It is so very important to me to do this.

So far the 10th anniversary year of Heather’s cancer has gotten off to a rocky start. My only hope is that it gets better soon.

Aftershocks or “grief bursts” happen when some of the “down” feelings you have already experienced in grief come at you again several months, or years later. Sometimes something acts as a trigger and catches you by surprise; a song, a place, a movie, a season or event, painful emotions crash in on you, and it feels as if you have started the grieving process again.

IMAGE: Heather getting ready for her spinal chemo in radiology. I would stand behind the lead wall in the same room. Yes I was that mother. I won’t be on a gurney but this will be my view for the injection…