Families Are Forever

I know these two pictures look a lot a like but they are very different. The one on the right was a fun event, we had bailiff, (wearing bullet prof vests), lawyers, judges, random people just watching I guess.  Mr. and Mrs. Hardcastle were asked a bunch of questions about who they were and their marriage date, and if they were willing to take on all the rights and responsibilities of being Burton's parents.  That his birth parents had given up all their rights.  Obviously they answered all the questions correctly, because they were legally given their son.  What an exciting event.
     The picture on the left is from the Ogden Temple.  In this beautiful setting,  there were lots of Aunts and Uncles, Grandma's and Grandpa's, friends and we were told heavenly family too.  A very nice temple sealer, who gave words of advice to all of us, and then the little guy was brought in and held between his loving parents and with very few words said he, became his parents eternal son.  Also a most special and exciting event.  This was followed by his being given a name and blessing by his father, which was a very special blessing. Then food and visiting and cousins running all over the place.
     Watching the kids have fun and seeing all the love and support that Gordon and Jessica have is so heart warming and tiring!!!!
     Once again the Lord is watching us and his blessings are many.        

OUCH OUCH

     New update,  I went yesterday for what I again assumed was a regular MD appointment and then chemo.  I was told once again that my chemo wasn't working. 1st OUCH!  It was because of the symptoms I've been having of fevers and new pains, and being so tired all the time, but either way it's not helping.  So onto chemo number 3.  This coming Friday, if the LDS transplant team approves the new drug, I will start it.  I asked a few more questions today about the drug, and was told the first time I receive it, it will take about 8 hrs.  I will be sitting in a chemo chair for 8 hrs. hard to think about. I'll need to find a good TV series, some good music and take a long nap.  I guess there is about 4 hrs. of pre medications then the drug is started.   So each time after that it's only about 4 hrs.
     But the good news is I've been approved for the stem cell transplant.  I still don't have an actual start date, but I did have a Bone Marrow biopsy, second OUCH!  They drew a bunch of blood and I guess I'm moving forward.
     Boring I know.    
    
      

Counting blessing 10 x 10 (little toes and fingers)

     May 10 about 7:30ish PM  we received our 8th grand-baby.  Matt and Jenn had a beautiful little girl, Margot Lynn Hardcastle, 8lb 7oz, 22" long, and tons of dark dark hair, that everyone has commented on.  She appeared perfect to her parents, the nurses, the Dr. and the family, even big sister Charlotte expressed no concerns about her new little sister.
     But about 5 days later Matt and Jenn were told she had, what was called congenital Hypothyroidism.  So it's just that, a low thyroid level.  I didn't even know they checked for that, but after much research, done by the whole family, one thing I found out is that it's a test that's been done, as part of the new born profile, for 20 years.

     Okay we thought, so low thyroid, but again with Google, Web MD, or what ever site makes us all experts, we also found out that this condition needs to be treated quickly and with in a certain time frame to Prevent Permanent Brain and Physical Impairment.  So Okay again lets get her treated, well it wasn't happening and no Dr's were talking to Matt and Jenn.  They found out their Dr. was physically out-of town.  They were sent for more blood work to make sure the numbers were correct, in the mean time, Margot was the perfect baby, too perfect.  She was sleeping all the time, a sign of low thyroid in infants, we were all getting more and more upset and concerned.
     On Friday the 20th Matt called me and said the wrong blood had been drawn and now they  were being sent to the McKay Hospital lab to draw the correct blood sample.  They were frustrated and scared as was I.  So before I went for my Chemo I looked up Primary Children's Endocrinology dept, got a general number, dialed it and got the nicest young man on the phone.  He listened to me explain our situation and calmly but what honestly seemed firmly, told me to have a referral faxed to them TODAY, and gave me the number and told me that today or tomorrow morning their on-call Dr. would look at all the results.  He said the baby would get an immediate appt. with them and that things would be taken care of.  So I called Matt with the information and he started working on getting the referral sent down, which happened quickly. Then with-in a couple of hours of the lab being drawn, the Dr. On-Call called Margot's on-call Dr. and gave them the order for what medication and dosage she needed and what pharmacy it was at.
     The rest of the story is, with in about 2 days she was acting like a typical new-born, crying more, awake at night more, eyes wide open more, pooping more and just more active.  The day Matt said she was crying most of the day, I just wanted to cry myself and I didn't feel sorry for mom and dad, I was just more grateful than ever. 
     Our Father in Heaven knows each and everyone of us, he knows our name, he knows our needs and our situations as unique as we may think we are, he know them, feels our frustration and knows what we need. We may not think he does, but he does.  One thing I've learned from all this is he is listening, no matter how quite our prayer might be.  I've been told now for 6 months, "you are in my prayers or I've put your name in the temple roll, or I'm thinking about you", I've decided it never hurts to have others prying for us too, right?  But we have to be listening and with all the noise around us it's HARD!    
   

Moving Forward (is this happening to me)

     Yes I am moving forward, just a different forward than I thought would come this quickly.  When I meet with Dr. J. the following week, he did have a plan.  He explained again that my MM wasn't responding to normal chemo and he didn't want to move too far forward with any of the new drugs, because some of them could preclude me from having a Stem Cell Transplant down the road, so after of lot of investigation and consultations he was moving to a different chemo regimen and wanting me to meet with the Transplant team at LDS hospital.  
       I visit with women everyday and help them try to understand their breast cancer, how to move forward with their life and I try to give them help with what ever they need.  I have not had a ME, (case manager) in my MM road up to this point.  Well that very night, (after my appot. with Dr. J.)  I got a phone call from a case manager for MM from LDS.  I finally felt like I had an advocate, someone who understood and was here for me.
      I did have to wait 3 weeks for my appointment,
      The day finally arrived and we meet with a PA who did a physical and went over my 10 page history papers, then we meet with Dr. G and my case manager.  She was so informative and easy to understand, and explained some possible reasons for why my MM wasn't responding and what Stem Cell could do for me.  She went on in detail on how it worked, and how it was done, that it worked for  97% of those who have it done.  And they hope I can get 2-5 years of remission.    Even though she was easy to understand it didn't make any of it sound any easier.  It didn't scare me too much, but it still makes me anxious.    
     I have to share an experience that only lasted for a few moments.  As I was listening to Dr. G. suddenly I was somewhere else thinking....is this information something that I am learning about to teach someone else or is this really happening to me, this only happens to other people, but then it all came back that yes this is my life, my situation, my disease.... It was a surreal little experience.
     Work has been a huge huge weight on my mind since the whole stem cell idea was brought up.  My boss was already in the process of hiring a PRN RN that we could train in my job and he could also use in his other department.  Everyone knows that any new hire can take weeks and weeks to get through the hiring process, orientations, training, etc.  Then we had a meeting with our 2 Dr's. my boss, office manager, and a few others and we were discussing what needed to happen in my abscess.  Long story short, we used to have a PRN RN, and she quit working to concentrate on her own businesses, and it was suggested to give her a call and see if she might be interested in coming back to help us out.  And She WAS.  She had been thinking about us for a while and was actually missing us and was very interested. 
      Prayers are answered in so many ways.  The moment I was told she would help us, a very heavy load was lifted.  I started to cry and found out it was Dr. I's. idea.  Just an FYI, she was raised LDS but has absolutely nothing to do with the church, but I thanked her for listing to her promptings, she just smiled and said she wanted the best for me, but I new she was inspired, and she listened!!

     Our family is growing, suddenly we have 8 grand babies now.  The Lord is watching over all of us and his blessings are felt every day.

 We've had a new beautiful baby, Margot Lynn Hardcastle, born May 10th.  Mom and baby did great, but I think dad has been a nervous wreck for the last few weeks.

A sweet little 3 year olds birthday, Steela was delighted with her gifts, donuts, candles and attention.

      And a music recital for Hyrum and Kate.  They have always loved music. I've been in the car with the 3 kids before and had them singing at the top of their lungs Le Miserable, or humming star wars, and so many tunes they hear over and over again with their mom.




 Milo loves his cars, and asks for hugs.  I love that!

Benson is not only crawling but standing up and is total mobile, time for the baby stair gate. 

Burton and his bright eyes and hikes everyday with his mom, he should start keeping track to his miles, he'll soon be able to brag about his long distance travel.

And Charlotte became a BIG sister.  She loves her little sister and is always at her side making sure she is being loved and cared for.  So sweet to watch.

   

       This bunch of littles makes me so happy and brings such joy to my life. (I love their parents too), and they know they are always welcome as long as the kids are with them!!  No matter when I start this medical procedure I know between Kim and my kids I will be taken very well care of.     
     

Dissapointments

     I was getting used to the new routine.  Normal working, normal family life, chemo every Friday, pills every day, weekends where I have tried as hard as possible to be upbeat and not let my stomach-upset rule my life, but to be honest there have been many nights that having a dinner (takeout)  an getting a Red Box movie is the extent of our date nights and activities.  Kim is very patient with that, he always says he doesn't mind. but planning for future trips or activities is at a stand-still.  By now we usually would have our summer planned with at least a short trip, we weren't planning a big trip this year, due to our great Baltic vacation last year, can't do that 2 years in a row!!

     Over the weekend of Easter, we did fly to see Jodi and Trever, but this visit was a bit different.  We were helping move them back to Utah.  Trever was offered a job with a company in which he knows one of the owners and after much negotiating they were taking a new job in UTAH.  They sold their home in 24 hrs, and were headed back home. I really didn't do much to help, if anything at all, but help Jodi and entertain the kids.  Trever drove his truck the whole way, Kim drove Jodi's car with me, Jodi and the kids, and Milo, Trevor's dad, drove the U-Haul.  All I did was complain at night that my right leg and ankle were so swollen and painful, I was scared for many reasons.  Did I have a blood clot, could I not even do car trips anymore? Or What?  just new problems. 
     It was a new problem.  A couple of weeks after we were home I started having a pain in the front of my left leg.  Actually the whole leg was hurting and aching, but coming from one spot.  I walked over to my Dr's office and he was sitting at the receptions desk, he talked with me and wanted an x-ray right away.  I'm used to that so I later walked over to radiology and was x-rayed.  It's very convenient to walk 50 feet from my office and to get my medical care. 
     The next day was my scheduled chemo.  As I'm waiting in my recliner, visiting with a sweet lady who was receiving her last treatment for breast cancer, so I ran (walked) back to
my office where we had a few left over pink roses, and brought them back for her.  So I'm waiting again to get started, the cute aid came and said my Dr. wanted to talk to me.  Well that doesn't sound good, I felt like I was in trouble and heading to the principles office.  He came in and confirmed that my pain in my leg was a new lesion, of many that I have, but it was deteriorating and causing the pain, but it also meant that with that, and my blood work earlier in the week, which had no improvement, that the chemo I was on was not working!!!! 
     Just an FYI, the 3 medications I was on have worked for many people for many years, as many as 6 years.  I didn't get 4 months.  As I was looking at him, begging inside to please give me good news for the next step, he had none at the moment.  He showed me my lab work and my x-ray he explained what was happening.  I watch my lab every week seeing the difference from week to week, but not totally understanding it. He told me he needed some time to really look at every thing, to get some input from his partner's and that I might need to consider a 'Stem cell transplant', NOT something I wanted to hear.  I assumed that someday I might need to go that direction, but way down the road.  He said that my disease was progressing much fast than he ever imagined!  That is a lot to be told and take in.  So no chemo today!  I went back to the infusion room, hugged the sweet friend I had made wished her luck, walked back to my office, shut the door and cried!
     That night the kids had planned a miniature golfing activity for my birthday.  We all had a great time together, and that's what is important.                
    

Life goes on

     The end of that last entry made it sound like I was dying, soon,  I am not!!!  Christmas went on as sort-of normal, seeing everyone and answering lots of questions about a disease that I still don't know much about and just trying to figure out life and treatment.
     During their time home, Jodi and Trevor had Benson's baby blessing.  It was a fun night, one that the 2 of them worked very hard at making just right.  A lot of family, on both sides, came together on the Saturday, following Christmas, and gave a name and a very nice blessing to little Benson Trevor Flint. 
    

 Cute family photos from the blessing night.

     After Christmas I did get my first "infection", probably just being around sooo many people, it was just a normal cold, but I couldn't get over it, I ended up on 2 different antibiotics, but it's a little scary  now knowing that I can't even get over a simple head cold without medicine.  I now know too what having a decreased  immune system means. It won't be my last of such illnesses.  At work I was wearing a mask for almost 2 weeks. Just call me China Women.

     We all know that answers to prayers come in so many different forms.  I know I've had prayers answered, but never as a bolt of lighting or a loud voice from heaven.  so there have been times I wasn't paying attention and the Lord probably thought 'well if she's not going to listen, then what's the point'.  Anyway I have always had problems with my right knee.  3 years ago I had the meniscus repaired, it help the pain for a while, but the swelling would continue along with pain that would truly limit so many activities, and just make me so frustrated and I'm sure it did Kim too. I would get it drained every few months and maybe a cortisone shot  a few time a year.  With the MM my orthopedic Dr. told me he was very reluctant to keep draining it, because of the risk of infection with each drainage.
     There was a weekend in early February that I actually had pain and swelling in both knees, this was new.  I didn't even go to church, I stayed home and kept them iced and elevated.  That's all I could do.  I was sick about work the next day with the pain and inability to hardly walk.  I just don't miss work, I just don't, I think my whole family is like this, our mom was such an example about work and through everything she went through for years she just kept working.  Anyway I didn't know what to do.  I asked Kim and Gordon to give me a blessing.  I think deep down I just wanted the pain to go away and be able to walk better.  After the blessing, I of-course felt the same.  Gordon left and I just cried, something I do a lot of.  But I suddenly knew I had to go to the ER and get them drained.  I hate the ER, everything about it I hate.  I didn't think at first this was the answer AT ALL to the blessing.  We went in and we did the usual wait.  Eventually I was able to get both knees drained, no Cortisone shot, I went home swearing I was never going back, no matter how bad I was, I hate it.
     But the Dr. gave me a piece of advise that no one had ever told me.  He said there was a Natural Anti-inflammatory, Turmeric (the spice in pill form) that can help a lot of cases like this where the swelling and fluid just keep coming back for no apparent reason.  I walk out of the ER at 3am, Kim and I both went to work the next morning, and I went after work and got some Turmeric.  It is now May, and this is the absolute longest period of time I have ever gone without server knee pain and wanting them drained. The Lord gave me the answer.  He gave me the confirmation that I needed the ER that night, he gave me a Dr. that cared enough to give me advise and not just treat the problem, I was with a patient husband who continues to be understanding, caring and does his very best to not show frustration, something I don't do very well.
     I've never asked for this disease to be taken away from me, but I do ask to be able to hear the still small voice that will be there when I need an answer or patience or understanding of what step I need to take next.        
     
           

Love and concern from so many around us.

As family and friends started finding out what was happening the out pouring of love was endless.  I can't even count the phone calls,  flowers, those wanting to feed me, but I couldn't eat, and those telling me I was in their prayers and my name had been placed on the Temple pray roll.  It was amazing and very humbling to be so loved.  I try so hard now to use that as an example and do for those who are in need, even if it's just in  prayer, but to be name specific and to mention their individual hardships.

I mentioned that I work in Cancer, I work in the Radiation Oncology department, not specifically with the Oncology (chemo) Dr's, but I know them all, and have developed a great working relationship with them and I knew how their offices are run, I've seen their rapport  with patients.  I remember not long before this all happened I had asked a few in the office who they would chose if they needed to be seen for cancer and everyone had a different Dr. with different reasons.  I had already given this a lot of  thought, for some weird reason, and I told them in the hospital who I wanted to see.

So after being home a week I finally got to meet with my Chemo Dr., Dr. Harold Johnson.  He and his staff were surprised and sad to see it was me, the cute front desk girl said we were hoping it wasn't you but we figured it was.  Kim and Melanie were with me, I always tell my patients, bring an extra set or 2 of ears your'll be glad you did.  I was glad I did we each heard and remembered different things.

So after the usual question and answer period and so many things about the cancer being explained to us, over an hour of listening and trying to take it all in I was probably stuck on only 10-14 years life expectancy, which I guess 5 years ago that number was 3-6 years.  But I tried to listen and I was being asked about participating in a trail drug, I was told about Stem Cell transplant, lots of different drug choices, bottom line I also went away hearing people can live long and normal lives.  OK I could do this, I wanted a long and normal life, I still wanted to serve a mission with my husband, I wanted to be at grand kids graduations and weddings, this could work.

I needed a ton more tests and an port-a-cath placed which I've seen my whole career.  So I got started, a little surgery for the cath, more x rays and more blood work And within a few days I started Chemo and was given all the information about the Drug trial. 
Regarding the trail, after much pushing by my Dr. I didn't qualify, because I was too young and too healthy...go figure.  But after hearing about a man doing the study, I think I'm grateful I'm not doing it.  I needed x rays from head to toe, so that we had a baseline for when I got new aches and pains he'd know if something is broken or not. At my first visit with my Dr. and the day I was to start chemo he asked about my left leg and I said it still hurt, but was a little better since back surgery, then another Well....you have a myeloma fracture of your fibula I need you to go see an orthopedic Dr. today and see what he can do for it. You have probably been walking around on it like this since it started hurting.  My overloaded brain thought WHAT?   This thing has hurt for 4-5 months I've even gone to a now-care for this pain and no x ray was taken because I had no "apparent " injury.  Then the walking BOOT,  worn for 7 weeks.

My first 3 drugs were called Velcade, Revlemed and dexamethasone, given every Friday, so I could have the weekend to recover.  No hair loss, just nausea, stomach and GI upset, bad taste in my mouth, I lost weight on these drugs due to the bad taste and nothing ever really sounded good,  and fatigue.  More fatigue great!  I'm going to be extra tired the rest of my life. I had been told I should be released from Primary too, that I needed to avoid people with sickness.  I wondered if I'd ever see my grand kids again with that comment.  All this started on Dec. 18th, 2015.  Same day the grand kids had their adorable Santa pictures taken, Jodi had just come to town, we had planned and still had everyone over for dinner that nigh and my "new normal" life had just began.

Being busy and chaotic was probably the best thing. that evening, Melanie sat herself down in the middle of the front room floor and preceded to wrap 90 % of my Christmas presents.  I wish I had a picture of that night, we had kids everywhere, brand new babies, Burton and 3 month old Benson, all the other kids just running in and out and wrapping paper and gifts everywhere, the TV going the adults going in and out visiting, and I sat in my rocking chair and took it all in.  Being grateful for EVERYTHING.  My husband, life, kids and the little's.

I want a long, happy and normal life!!!!!!!!!!  Now if the long doesn't happen, I've had a great life with the best people possible in it.  My blessings continue to multiple, not just by people numbers but by my husband, my kids, events, blessings, testimonies, church membership, callings,  siblings, other family members, friends, by career, groups of people I've meet along the way that have blessed my life in ways they will never know.

God has a plan for us, we might never totally understand it, I certainly don't know what I am supposed to learn from this trail I've been given, or what my family is to learn,  and we may never understand it, but I will try my very best to deal with it and be a good example, to keep smiling, only cry to Kim and my girls (sorry), but keep praying and working to make my life good and normal!