“To you who are parents, I say, show love to your children. You know you love them, but make certain they know it as well. They are so precious. Let them know. Call upon our Heavenly Father for help as you care for their needs each day and as you deal with the challenges which inevitably come with parenthood. You need more than your own wisdom in rearing them.”
Thomas S. Monson

Tuesday, June 20, 2017

Salt Lake City Fun

We needed to go down to Salt Lake for an appointment to check on Joseph. He is doing great. His weight has caught up to his height and he is growing taller, which was very exciting for him.  He dreams of catching up to his sister.

We learned a lot more about his disease while there.  We learned things to watch out for and things to do to help him stay in remission longer.  I fear the day that his meds no longer work, but his Doctor assured us that there are other options. It was such a relief to see how well he is doing.  I am so proud of him and his positive outlook on his illness.

After his appointment I took the kids to lunch.  It was still too early to check in to our hotel, but just down the street was Wheeler Farm, where my sisters and I spent time on field trips in grade school when we lived in Utah.  It was hot and I wasn't sure the kids would really enjoy it, but we went anyway.  It was fabulous!  There were lots of animals to love and touch.  We met a calf who was 2 weeks old and we met two who were about 6 weeks old. We saw donkeys, bunnies, chickens, pigs, and roosters. Annalina especially enjoyed the horses.  The next day we checked out of the hotel and the kids asked if we could go back to the farm.  There was a walk/run going on as we got there and wouldn't you know it, it was the "Crohn's and Colitis" awareness walk.  A bunch of the horses were at the fences being brushed down for a summer horse camp the following week. We got to meet them, pet them and learn more about them.  It was a great way to spend part of our day!


 







Saturday, June 10, 2017

Suicide...Passing on the Pain

I understand that my husband was in a lot of mental anguish when he took his own life.  His note to me told me I'd be better off without him and that I would find someone better than him to spend my life with.  These things are so untrue it makes me angry sometimes that he could even think it was okay to write that to me.  As if the kids and I could just move on easily without him. The sun rises on a better tomorrow?  No, our lives stopped the day he died.  It was some time before we could start moving forward again. Occasionally my life slows to a crawl as I process or reprocess the most difficult steps of grieving.

Taking your own life may stop your pain on this earth, but it causes a lifetime of pain for all the people who love you. You may feel deep down that everyone will be better off without you, but they absolutely will not be. You will mark them for life.  Eventually, they will begin to heal and move forward, but they will never be the same and they will always carry the loss with them. If you love them, and even if you can no longer feel the love you know is there, please don't do that to them.

For those who think I cannot possibly understand what it is like to feel as if the only answer to end the pain is taking your own life, I have been there and it is not something I am proud of. My friend Shantelle has shared with me how she has felt as she has faced the dark pull of suicide. She has helped me see things from a different perspective and it has given me some peace to know he was not trying to hurt me. It fascinates me that since Richard's death, I have contemplated ending my own pain.  After I have watched first hand the devastation that occurs like a ripple in a lake from such a destructive action. I have been so close it has terrified me that my mind could even go there. Except for once, what always pulled me back from the edge was my children. The exception was a particularly painful night when I laid in my bed sobbing in pain. I won't go into the details of that night except to say that in the morning when I awoke, I realized that through all the terrible pain, I had not thought of the kids at all. I now surround myself with reminders of them.  I carry their pictures with me. The truth as I hope and pray it to be, is I could never, EVER do that to them. I work hard to be sure I never get that close again(I will write more about that later).  So to anyone thinking that suicide is the answer, I want you to know just a bit of what it has done to my children and myself.

Dear Husband,

Your suicide ripped through our lives like a bomb, shattering our sense of comfort and peace. If you could be in our lives one day, seemingly fine and then be gone the next by your own choice, we were vulnerable to any unforeseen tragedy.

I sat with your children, one of each side of me.  They were confused that a neighbor had picked them up from school so early in the day and brought them home, without telling them why.  The heartbreak on their faces when I had to tell them you were gone was one of the hardest things I have ever had to witness.  And how do you say the words?  There is nothing you can tack onto the end to make it all okay.  I ached for them as I struggled with handling my own shattered emotions.

Although we talked about your passing often, it wasn't until several months later that your sweet teenaged daughter told me she felt it was her fault.  She said she knew you had been sad and was going to ask if you were okay. But she didn't.  And she felt responsible.  What could I say?  Had she asked, you would have lied and said you were fine. And she would have believed you, because you were that good at covering your true emotions. I could absolutely relate to her feelings though, because I also struggle with feelings that I could have or should have done more.  Even though I stuck with you after your actions hurt me again and again.  I told you that you were worth it to me, that our family was worth it.  I would have been there by your side if you could have just trusted me. But you didn't.  You could not share the deep pain you felt with me.  That leaves me feeling that I was unworthy of your trust and love; that I was somehow lacking as a wife.

You have no idea the pain it caused me to sit at the bank, asking about your account, only to have the service rep read your death certificate and ask if you were in a hunting accident, then read that it was suicide and tell me how selfish you were. It was a slap in the face. People can be cruel and people can be ignorant.  But it was your actions that opened me up to such a vulnerable position.

Find someone else you said. As much as I hate to think of the rest of my life alone, could I ever really trust someone with my heart again? You broke me time and time again, but I loved you, I stayed with you. I stayed with you, but you could not stay with me. To love is to open yourself up to the possibility of one of the worst pains there is. If I wasn't good enough to keep you here, how could I be good enough for anyone? Could I survive the conflicted feelings of loving another? Could I survive being hurt yet again?

Nine months after you died I was diagnosed with breast cancer.  There I was without you, my best friend.  Friends stepped up and helped me, but it wasn't the same as having the comfort of your love and encouragement.  I went through three surgeries, chemotherapy, many trips to the ER, and radiology without you by my side, waking up alone in hospitals, sleeping in our bed alone, feeling miserable without someone there to encourage me to keep going. I remember having such a high fever, but I was shivering so hard I could not get up for extra blankets. You should have been there with me, keeping me warm. This year has brought more health issues and I have had procedures done all by myself.  Sitting all alone in a waiting room, laying all alone on a gurney, waking up alone. Feeling so very alone. And all the while struggling to provide for the children, both financially and emotionally.

A year after your death, your sweet son became very ill and lost a lot of weight.  He wasn't eating well and he had so little energy.  It took almost a year to determine what was causing him to be so sick. I took him to specialists in Salt Lake.  Without you. He is doing much better now, but I am told they are not certain what brought on this disease.  It could very well be stress that triggered its beginning. Your sweet son had to go through all this without his father by his side. And I, without my husband.

Father's day is hard for us all.  So much joy and celebrating fathers. My children long for the good times when you were here with us.  Father/daughter dances and activities.  Father/son campouts.  And so much more.  All have to be discussed carefully because your children no longer have a father to love and support them.

Who am I kidding, all holidays are hard. I'd prefer to ignore them all. But I must keep up traditions with the kids because it is what they need no matter how painful I find them to be.  They need stability and I try desperately to give it to them. It is exhausting but they are worth it.

I learned at a Wellness Fair last month that myself and the children are now at a higher risk for suicide ourselves.  I suppose you helped us plant that seed.  I will be vigilant in watching the kids closely and we will discuss suicide openly. I will do everything I can to protect them and keep them safe.

I am so very weary.  I miss holding your hand. I miss your hugs. I miss the long talks we had together. I miss our future dreams.  I miss your smile. I miss being your wife. I miss feeling loved and important. I even miss being at your side to help you battle your depression and addiction.  I miss you.

-Your loving wife

Please, please, if you are suicidal, find help. Call a friend, Call a hotline (National Suicide Prevention Lifeline Phone Number 1-800-273-8255), call me, text me, email me. I don't care if I know you or not, you are an important part of this world and I would love to remind you of that. I don't judge those who walk in darkness. I pray that you will soon see the beautiful light again. I want you to know you are not alone. (Amylloomis@gmail.com)


Thursday, June 8, 2017

Hair Today, Gone Tomorrow

I remember very distinctly in high school feeling ugly. I had thick beautiful hair that I liked to perm so it would look even thicker.  I loved my hair, I felt it was my one redeeming quality in the beauty department.  I see pictures of myself then and I wish I could talk to this teenage me and tell her how gorgeous she is.  My life could have taken a whole other direction, a much better direction.  But I have learned so much over the years, that it is okay.

The first photo was a week before my first chemo treatment. Knowing it was going to fall out, I went and had it done at the beauty school.  I just wanted to feel beautiful for a short while.  After my first chemo treatment, I started losing lots of hair.  Two weeks later I woke up to hair everywhere.  I would run my hand through my hair and gobs of hair came out in my hand.  It was kinda interesting, kinda sad and kinda annoying all at once. I decided that was the day. I got out the clippers and never having used them before, I jumped right in.  I won't lie, there was some fear there and there were definitely tears shed.  But I did it, I shaved off my hair.

The final photo is me just last week after a year of hair growth. It came in quite curly and sometimes I have trouble managing it.  Sometimes it is a lot of fun. But mostly, I miss my hair!




Thursday, June 1, 2017

Melanie Comes to Visit! ( oh, and Adrienne and Jon too)

My granddaughter Melanie is amazing and so is her mommy Adrienne!  We were blessed to see the Romrell family over Memorial Day weekend.  They came to visit us!  Melanie is such a momma's girl! We enjoyed watching her interact with her mom and dad.  I am always so impressed when I am with my daughter's sweet family at just how loved Melanie is. We took her to the splash pad here in town and rode the Rexburg carousel with her.  We spent time at a fun grade school playground just down the street.  She wandered our back yard and played on the trampoline. It was really great. 

And for a while I got some one on one time with her(Adrienne had to sneak away to take a shower).  We walked over to the canal and watched the water go by.  We blew bubbles in the backyard and she enjoyed watching videos of herself I had taken earlier in the trip.  She is such a cutie and is so very smart!  I just love Melanie so much!! I am truly blessed to be a mother to my dear children and to get to be grandma to Melanie.  Life is sweet!







Saturday, January 7, 2017

A Very Merry Christmas

We got to meet Adrienne and Jon in Coeur d'Alene in October for a few days.  It was so fun to see how much Melanie had grown!  While there Adrienne and Jon invited us to come to Seattle for Christmas.  We were so excited!

As the weeks passed, I started getting very anxious about travelling during the holidays. I would wake up in the middle of the night obsessing about the trip, so in November I decided for my own mental health, we would not go. I mentioned this to the kiddos and they were heartbroken, and just like that, the trip was back on!  I still felt great anxiety. Lately I have noticed that for my own sanity I need to keep things simple, whether it is meals, schedules or my own wardrobe.  My mind could not process the shuttle down to Salt Lake, all the things that entail the flight to Seattle, finding our luggage, getting the car rental and then finding Adrienne's place.  These are not really hard things, but to my fragile mind all together they seemed impossible.

Adrienne told me it was okay if we couldn't make it, but I was not about to let my own insecurities ruin the opportunity to spend precious time with my family.  She made the reservations and we were all set.  I read up on baggage and learned it costs extra to check luggage. So we found our smallest rolling suitcases and each of us took a backpack.  I was so worried about the size of our luggage for carry-ons.  A few days before we left I posted to Facebook for advice on air travel and my friends and family really came through. I felt calmed by all the wonderful advice.

The morning came to leave and Salt Lake Express picked us up at the house at 6am, such a nice service they offer here in Rexburg.  Our ride was long but pretty uneventful.  The Salt Lake airport was not nearly as busy as I thought it would be.  I easily found the kiosk to print up our tickets and off we went to security which only took up about 15 minutes.  We found our gate and I took a deep breath!  

Our flight was pretty smooth. Joseph loved it but Annalina did not. But no one got sick, so that was good!  We each watched a different movie and before long we were landing.  Adrienne, Jon and Melanie met us and drove us back to their place so I never had to worry about a rental car and finding my way around.  What a blessing that was.

My mom and sister Megan and her kiddlets were waiting at Adrienne's place and we went to dinner at Red Robin.  They had to head back that night so the visit was short, but it was so good to see them all.

Adrienne was a wonderful hostess.  She took such good care of us!  One of the greatest blessings of being a Grandma is watching my daughter be a mother.  She is an amazing mother and wife and I am so proud of her.  The relationship she has with sweet Melanie is inspiring.  That baby is so loved!!  We had fun on Christmas Eve playing with Melanie. Jon shared his 3D headset with the kids and they loved it. I even tried it!  Fun!  We played and laughed.  It was great to watch the kids interact with Adrienne, Jon and Melanie.

On Christmas morning we got up and went to church with Melanie and Adrienne.  Adrienne was part of the Christmas program and it was so much fun to be there with her.  Melanie stayed with us the entire time and didn't cry at all(she ate a lot of banana puffs).  I call it the great Christmas miracle of 2016.  She even snuggled with me a few times!  We got to meet some of Adrienne's ward members and the sister missionaries she has become close with since she is a ward missionary.  It was a really neat experience!

We got home and went outside to take some Christmas morning photos. I will share them below.  Then it was time for gifts.  Adrienne had stockings for each of us.  She had made a French toast casserole that was amazing.  We played games together and then enjoyed a wonderful dinner of Italian stuffed flank steak with bacon wrapped asparagus and deviled eggs and pumpkin pie for dessert. We had a great time watching Melanie with her new gifts. I have to say, that little baby has so much personality!  There is never a dull moment with Melanie! She is about 8 months and is crawling, has several teeth and can pull herself up on just about anything.  She will be walking soon, I am sure. She loves peek a boo and shakes her head no when you nod your head yes to her.  She loves to eat, she drinks from a regular cup, she is an amazing baby. We love her so much!

The day after Christmas we went to the Botanical Gardens with Adrienne and Melanie and enjoyed the beauty of the Northwest.  Every time I went outside it smelled so great.  Adrienne and Jon have a wonderful apartment that backs up to a forest and park area.  The location is beautiful and peaceful.  I am so happy for them. I miss the Northwest!

It was a glorious few days of memory making with my most precious people!

I am sharing this story in part to help me remember I can do hard things.  I cannot let my anxiety keep me from the most important things in this life.  Seeing my daughter and her family was worth all the unnecessary worry.  They are so precious to me and to think I almost didn't get to experience Christmas with them!  We are truly grateful that they opened their home to us at such a special time!









Thursday, January 5, 2017

Joseph's Journey

It's been a long road, so this story is long as well...

Joseph's journey started a little over a year ago in December of 2015.  A few days before my first surgery he got very sick.  I took him to urgent care and they said he was exhibiting all the signs of appendicitis. They had him drinking lots of water and by the time to surgeon arrived, he had thrown up and was feeling much better.  I took him home and he seemed to improve a little.  My surgeries came and went and I started my cancer treatments.  He was still very tired, often asleep within an hour of coming home from school.  He got occasional fevers for no reason and had trouble eating and processing food. He lost more than 10% of his body weight.  He tried to play down his symptoms, I think because I was struggling with treatment and he didn't want me worrying about him. This still breaks my heart, because my most important job is to worry about and care for my children!

A month later I took him in and asked them to please help us figure out what was wrong. I asked for food allergy tests.  This was all very traumatic for Joseph who was terrified of needles. But he was so brave each time.  I got a call the day before my second chemo appointment and was told he had a gluten sensitivity.  We cut out all gluten, which is not an easy thing to do.  But it was all I could do.  He would tell me it was helping, but after months I noticed the diet was not helping.  I wondered how he was getting gluten in his diet to make him so sick.  We were being so careful!

We went in to see the doctor once again and were referred down to Primary Children's Hospital in Salt Lake City.  His first appointment was on October 31st.  Heartbreak!  We would not only be gone for Halloween, but Joseph's class was having a field trip that day.  I told him to bring his costume and if he felt up to it, we would find a neighborhood to go trick or treating at.  Annalina came along to show her support for her little brother whom she ADORES!  It was fun to have her along and she is an amazing navigator, so I didn't have to worry about getting lost.

We met his wonderful new Gastroenterologist.  She was very pregnant and very good with Joseph.  She was concerned about Celiac, Crohn's Disease and Ulcerative Colitis.  We did more bloodwork while there and the doctor told him he needed to eat gluten for the next month so she could see any damage being done in his colon.  He was thrilled and we got him a burger and fries for dinner.  We got back to the hotel and he was exhausted after the long drive and all the waiting at the clinic.  He did not have the energy to go out for Halloween.  We watched a couple of Halloween movies and went to bed.

We went back to Salt Lake in early December for an endoscopy and colonoscopy.  We got in the night before and stayed in the same hotel.  Joseph had a miserable night getting prepped for the colonoscopy. He had not eaten for a day and had to drink Gatorade with laxatives.  He was miserable.  We cheered him on each time he finished another dose and he cried a few times. But he did what he needed to do.  It was so hard to watch and at times he would just come snuggle with me.  At times I found myself feeling angry at having to do this alone. But as it always has been and always will be, loving my children through their most difficult times is a privilege, and one I do not take lightly.  I would do anything for any one of my children!

Joseph was fairly nervous about getting the IV.   We left plenty early and got to the clinic we had been to for his first appointment only to find out we needed to be at the Children's Hospital in downtown Salt Lake.  I panicked a bit, ok a lot, I hate driving in big cities and I had been struggling with severe anxiety for a while!  But Annalina was right beside me, helping me look for exit signs and street names and just keeping us on track.  We were only about a half hour late.  Joseph was the second procedure of the day so it all went fairly quickly. It turned out that they put him to sleep with a mask before putting the IV in, so he was very relieved about that.

After the procedure the doctor explained that she had ruled out Celiac. She showed me lots of pictures of Joseph's insides and said she would have to wait on the biopsy results to know for sure which of the other two diseases he had. She also explained that during the biopsy his colon was very unhappy and it had bled more than she liked to see.  So they checked him in for observation and we were unable to head home that night.  He was very cute when we first saw him after his procedure, or as we like to say he was loopy.  He was grateful they had "slurpees" and crackers for him to eat.  We got to his room and I have to say, Primary Children's Hospital is amazing.  They took good care of Joseph. There was plenty of in room entertainment as well as a binder full of DVD movies to choose from.  When he started to feel hungry I just dialed room service and they brought him whatever he wanted.  His first choice??  Top Ramen!  Later he ordered a chocolate shake with m&ms and marshmallows.

I was really nervous about the drive home that next day. There was a storm coming through the I-15 corridor and that had me very worried.  I am a pretty good snow driver, but my anxiety had me doubting my abilities.  But we had no choice but to stay the night.  Joseph's bloodwork came back fairly good so we got the go ahead to leave.  My heart was full of prayers that this big storm would not strand us, or that it would hold off until we got through.  My prayers were heard.  The ONLY snow that fell was a light snow that came at the summit of our drive.  The freeway was clear the entire rest of the way.  What a blessing for my anxious mind and heart!

The doctor called the following week to let me know that Joseph finally had his diagnosis, Crohn's disease.  This is an autoimmune disease that he will deal with for the rest of his life.  She recommended a drug called remicade, which is given intravenously.  There is a high risk of rejection with this medication, so once a week Joseph would have to take 7 pills to counteract that.  And that medication has side effects so once a day he would need to take another pill.  Very overwhelming!  I was dreading telling Joseph about the IV part.  But he was brave and said if it would help him feel better he would do it.

On December 21st I took Joseph down to the hospital in Idaho Falls for his first treatment.  He was nervous.  Occasionally I would see his eyes fill with tears, but he was so very brave.  They told him they first needed to draw  blood and the tears almost overflowed.  He didn't want to be stuck twice. The nurse we got was great and they got the blood they needed from the IV, so only one poke. It took several hours and Joseph was sleepy from the Benedryl they gave him, but he did wonderfully.  I am so proud of him! 

Yesterday I took him down for his second infusion.  He says its getting easier each time!  He is already feeling better, though still very tired. I got a call from his nurse at the Children's Hospital.  She told me he has persistent anemia, so we get to add a couple doses a day of iron.  His doctor in Utah had her baby, so we have been temporarily reassigned to a new doctor for a while. We will be going to see him in three weeks.

It has been such a long journey for us and the journey will continue. It is so hard to watch your child suffer and struggle.  Joseph has had more than his fair share of trials in his short little 11 year life.  But he is facing it all with grace and understanding. I am constantly amazed by his strong spirit. He is such a great example to me. It is also an amazing thing to watch him eat.  He is often hungry and he can eat a whole plateful at dinner now!

I have had to take a lot of time off from work, but I am blessed that my supervising teacher is so understanding of this.  I had been applying for other jobs with no luck and I know that in time I will need to find a better paying job so that I can better support us, but I can't help but think this is all part of the plan.  When the time is right, my career will go where it needs to, but for now I am where I need to be. I feel so very blessed.  I know that we are being watched out for. 




Wednesday, February 17, 2016

Surgery - Tale Two

My lumpectomy was supposed to be a later in the morning surgery, which was nice since we had to go to Idaho Falls for that one and the weather was not cooperative.  But the day before I got a call telling me to be there by 6am.  I called my trusty friend Kara, and she once again came to my rescue and took me, waited with me and brought me home. 

Well there was a lot to do before I could even get to surgery. Turns out the first stop after getting the IV in was to Nuclear Medicine where I had radioactive stuff put into my left breast.  It stung really bad and I had a nurse there holding my hand for it.  Then they took some pics with a big machine and sent me on to the ultrasound lab.  There I got a metal rod placed through the tumor via ultrasound guidance.  Then to the mammography department to make sure they did it correctly.  I was in horrible pain by this time.  I had my previous surgery just a week before and I was not allowed to take anything after midnight, so all my pain meds had worn off and my hysterectomy incisions were hurting A LOT!  My gurney was extremely uncomfortable and my poor bottom got tired of sitting, but just shifting to another position was bad, so I held pretty still. We went to preop and waited and waited and waited, I kept hoping they would just come put me out of my misery.  I was so grateful for Kara being there. Again, she made a difficult situation fun.

My funny story from this surgery is that I remember waking up and looking around and I could not see a thing, everything was far too blurry.  I closed my eyes and tried again. Without a word a nurse came and wiped my eyes and suddenly I could see again. In my drugged up state I thought, "Oh, I was crying, so that was it".  When I went back to my first room to get ready to go I went into the bathroom and looked in the mirror. I had a big circle of something like Vaseline around my eyes. I had two white spots on my forehead from some kind of monitoring and apparently breast surgery required oodles of orange betadine be used to clean half of your face as well as your chest.  I looked like a clown. I was just glad I saw it before I got home! No need to traumatize the kids further.

After surgery it did not take me long to be discharged and home we went and to bed I went.  Lucky for me Adrienne and Jon moved back to Rexburg the next day and they stayed their first night with us.  I was so relieved, because it was New Years Eve and I was NOT going to stay up until midnight.  As it turned out, Joseph went to a friends party and got home around 10:30 and went to bed.  Annalina went to her first church dance and got home after midnight.  The rest of us went to be before the ball dropped and that was just fine with me! 

I am pretty good at taking care of others when they are sick or need help, but myself?  Not so much.  After two days of pain meds after surgery number 2 I figured I had been on them long enough, so I stopped taking them. Ouch, big mistake. It took me another day or two to get the pain back under control.  Christmas break was a blur, it seemed like before I knew it, the kids were going back to school without me. 

Little did I know at the time, that a third surgery was looming in my future.  More on that later!

A Tale of Two Surgeries - Tale One

First a word of advice, don't have two surgeries within a week of each other.  Unless of course you have met your annual out of pocket max and the second surgery will be completely paid for and you just don't have a lot of extra money laying around with which to pay for surgery!  Then maybe you should do what I did! 

Christmas Break was somewhat of a blur to me.  I went in early on the 22nd for my complete hysterectomy. My friend Kara picked me up and was there with me before and after surgery.  We had a little time to wait before surgery and she helped make it fun!  I had great nurses.  I stayed the night in a beautiful room with a wall full of windows.  I had a great view of Main Street Rexburg and their gorgeous Christmas Lights.  It also snowed a lot while I was in the hospital and I loved watching it from my room. I got a wonderful drug called dilaudid. I wish I could have kept my IV and been given a bunch of that to take home. Good stuff.  At about 10 that night I got up to walk around for the first time.  It went ok, not as painful as I had expected it to be.  Just a half hour later I had to push the nurse call button because my chest hurt so bad I could hardly breath.  More dilaudid and I was feeling much better.  Turns out all that gas used in laparoscopic surgery does not leave your body once surgery is done.  Some of it hangs around to cause issues.  Getting up and walking had sent it up to my chest where it really, really hurt.  An hour later that pain was back, but the nurses were great about helping me get it under control.  Later a nurse brought in a beautiful vase of yellow roses with gold painted fern leaves.  It looked great next to the beautiful roses Kara had brought me.  So lovely. The nurse told me there had been a wedding reception that night and they had brought their extra flowers to the hospital for the nurses to give to patients.  How sweet and what a wonderful idea!  She also said my room was pretty sunny, because of me, but she thought I would like them.  What a nice thing to hear!  I try to be nice to everyone.  I try to be extra nice to those who are working so hard to help me be ok.  It turned out my nurses and I were a great match personality wise.

Funny story, I always ask my surgeon, "have you ever lost a patient during a "insert surgery here"?  And they always say no, but my hysterectomy doc said no, but he had heard of patients dying from falling off the OR table and hitting their heads.  So, they gave me the loopy meds and wheeled me to the OR.  It was me and one nurse and she asked if I could scoot myself over to the operating table.  I said, SURE!!  And as I scooted, the gurney I was on began to move away from the OR table and the nurse panicked and grabbed me.  I thought, in a totally calm tone of thought, "So this is how I go!".  But we managed to save me from falling.  That is the last thing I remember. I bet they are hoping I don't!  heehee

The next morning my surgeon came to see me.  I was pretty out of it.  He suggested I have a blood transfusion, because not only was anemic to start, but I lost some blood during surgery.  I remember thinking how bad transfusions could be and no way was I going to get one.  Now I must say, I don't have a problem with transfusions, nor do I understand why it was an issue for me at the time, but I said no.  I remember the surgeon saying if he had my blood levels, he could not function.  I remember vaguely thinking, that's because you are a man.  I know, I am so bad!!  So why was I given the option?  Without my advocate/friend there?  Who knows.

I went home the following day and once again my dear friend Kara came and got me. She is such a blessing to me!  It was so good to be with my kiddos.  They had come to visit in the hospital but only stayed about 8 minutes total.  I think it was a little worrisome for them to be there.  My kids don't talk about their fears much, but they certainly have them. And who could blame them?  They have been through so much!

I came home from the hospital on the 23rd and struggled to keep my pain levels under control.  It was exhausting and my kids didn't see a whole lot of me that week.  I was in contact with the on call nurse through Christmas Day.  She was good at suggesting things that might help.  Christmas morning the kids woke me up and we opened gifts. It was fun, most of them were from outside our home, so it was a nice surprise for me to see what everyone got too!  And then I went back to bed.  What is funny to me is that a few days later as I was cleaning up from Christmas, I went through my gifts, and it was like seeing them for the first time!  Turns out I didn't remember much from Christmas morning. I will write more about our Christmas later, because we had so much to be grateful for this Holiday Season. We were certainly in the prayers and thoughts of so many.  We were also the center of many acts of kindness and we know that we are truly blessed.

Surgery two, up next!

Tuesday, February 9, 2016

The Truth about Chemo...

...what I've learned so far.

I have breast cancer.  I was going to be a model patient and handle this with grace and dignity.  But why lie about it?  If my "real" journey can help someone else to feel they aren't going crazy, then I am all for that.  The cancer is not so bad. It didn't hurt me physically until it was time to do something to get rid of it.  Surgery, hard.  Recovery, not a lot of fun, I mean really, 6 weeks wearing a bra constantly??  Gets a little old.  Chemo?  Yeah, I was going to breeze through this treatment like it was nothing. I was going to rejoice in all my bald beauty. ha  The sad truth, this SUCKS! And I am not even a full week into it.

I try to stay positive and I know in the end all will be as it should, but there is no breezing through chemotherapy.  I've spent more than my fair share of time huddled in as close to the fetal position as I can get, just crying from the pain.  I've had nausea, a bright red face for days on end, severe joint pain, exhaustion beyond measure, diarrhea which led to hemorrhoids, weird little rashes breaking out all over my body and a white pasty film all over my mouth that feels gross, tastes gross and is just plain gross.  I have sores in my mouth and it hurts terribly to swallow, and Sunday night I ended up in the emergency room with a fever and severe pain. Turns out it was probably just the chemo effects, but they told me to go so I did. I felt really foolish the next day when I went in for the advised follow up at my oncologist only to have the PA say, so why are you here? He didn't even look at my file before walking through the door. He thinks I am crazy, or a big baby, but it turns out when you tell me warning signs, I am good at paying attention and reporting on them.  And when your oncologist tells you to get to the ER, you don't ask why, you just go.  My ER doc said it was something that could go bad real fast.  Not the kind of news you want to hear, but at least it seemed like he took me seriously.

Tomorrow is my NADIR day. I get to go in and find out just how low my white blood cell count has become.  It should be at its lowest and this will tell us whether I need another fun treatment called Neulasta.  I am concerned that what I am experiencing is something more than chemo effects, because I am not sure how a low white cell count will affect me fighting off an infection. But we will take that step as needed. And I suppose if the oncologist office isn't concerned, maybe I shouldn't be either.  Except, I am!

I don't want to whine the whole post away, so I will share some good news.  My sister Megan and my mom are coming to visit me this weekend!  Yay!  I am so excited!  My little family and I have done well muddling through the past few months, but it has taken a toll on my kiddos. It will be wonderful for them to get some good solid family time and to feel much needed love from grandma and auntie Megan!  And it will be so good for me to see my sweet extended family!  I need to get rested up so I can enjoy every second!

Monday, February 1, 2016

Another plan!

Richard always told me I was a planner. I just feel so much better when there is a good solid plan in place.  I have been frustrated at times by the unknowable nature that is the cancer experience.  But, after many appointments and testing, we have a plan! (The plan is explained in the final paragraph in the event you want to skip the inbetween part of the story)

On Friday the 22nd, the anniversary of Richard's death, Annalina and I went down to Salt Lake City to the Huntsman Cancer Institute for a second opinion. It was a long difficult drive because I have been so anemic that I tire very easily and Jeep, bless her little battery, does not have cruise control.  But Annalina kept me awake and we had a fun drive there.  She also navigated me through the city to the institute which sits up on the base of the mountain.  It was beautiful with a glass front overlooking downtown Salt Lake.

We pulled up and they offer free valet parking, so Annalina hopped out and I had enough brainpower to grab my purse really quick. But after they drove away to park(or go off-roading, after all, the mountain was just right there), we realized we had left Annalina's things to keep her busy inside Jeep.  I wasn't about to ask them to bring Jeep back so we went exploring.  I got tired quickly and we went to the gift shop where we found a fun adult coloring book, but I am not so comfortable with that name, so at Adrienne's suggestion, we now refer to them as advanced coloring books!  heehee

Annalina had fun coloring and waited very patiently with me.  She cheered me up when I got a little blue and I was so grateful to have her there with me. 

I met with an oncologist who was very kind and very thorough with her explanations. She spent a couple hours with me walking me through everything from the beginning and all possible treatments.  She told me my first opinion was sound and sent me on my way. It was good and I felt empowered with knowledge.

We drove to the hotel that I had booked with the hospital discount.  The desk clerk asked for a note signed by my doctor and I lost it, I just started sobbing right there in the hotel lobby.  Somewhat embarrassing, I can tell you.  I had spent so much energy keeping it together all day that the dam just broke and I couldn't contain my emotions anymore. Annalina helped me pull it together and the clerk said it was okay, I could have them fax something over.  I cried some more as Annalina helped us find our room and got me settled down.  I did get the social worker at the hospital to fax over proof of our appointment.  Later when it was dinner time Annalina went down to the lobby to ask for delivery menus, I was too embarassed.  She was such a wonderful companion to me on such a difficult day.

The Monday after we got home I learned that my cancer is moderately aggressive.  My local oncologist recommended chemo, radiation and anti-estrogen treatment.  The very next day Adrienne took me to the local day surgery place and I had a port installed in my chest for treatment.  Adrienne was so good to go along, even though it was early. She got a little woozy when they tried to put in my IV, so she got carted away in a wheelchair to enjoy the rest of the morning with juice and string cheese! 

This surgery was the quickest and easiest for me, about 3 hours total, but the recovery has been really rough.  The port is very painful and even something as simple as rolling over at night causes a lot of pain. I have struggled with controlling the pain while trying to have a life.  I get up, pain med free, go run errands or do things around the house for a very short while, feel enough pain to stop and take something, then I sleep for a while. I never feel rested.  Not a fun cycle.  I don't recommend three surgeries within 5 weeks, my poor hair is falling out like crazy and I haven't even started chemo yet!

Insurance has been an issue, they did not okay the chemo last week when I thought I would be starting, and they will not cover the IV iron I need to overcome this anemia, so I will be getting a blood transfusion tomorrow and will meet with the PA who will teach me all there is to know about chemo.  Then Wednesday morning, at 8:45 I have my first chemo treatment. I am not entirely sure how this will affect me, but I am prepared to find out.  It is a good feeling that things are getting going again and that I am one step closer to being done with this chapter in my life.