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!

Discovery/Diagnosis of my Multiple Myeloma

I'm going to start this blog writing back up and see how it goes.  I was writing a sort-of journal of the Multiple Myeloma, (MM) diagnosis and it wasn't going so well, so then I stopped and I really want to keep tract of what I'm doing or what my possessed body is doing, a body that I no longer know, is doing. As the process continues I will try and update the new changes here on the blog.

FYI, I work with cancer patients every day.  I am a Breast Cancer Navigator/case manger.  I am a central person that helps them with appts, teaching, education, getting answer's when they are frustrated, giving them surgery post-op instructions, basically anything they need I try and help them with.  So I know a few things about cancer, I knew nothing about this and there is no Navigator for me!!!!

A quick over view of the beginning, mostly for me, because I can't remember this morning let alone back in Dec. so I going to try and give myself the highlights.

In the summer of 2015 I had started having weird Left leg pains, arm pains and low back pain, supper dry mouth and fatigue or plain tiredness that I couldn't explain, oh and constipation that only an occasional dynamite pill would help,.  I started having MRI's of everything in hopes that is wasn't MS.  Head, neck and spine.  they found a ruptured low back disc that was probably causing at least the leg & back pain, so we went with that and they also found a cyst on my thyroid that no one was too concerned with, because the back was the priority. I was unable to get into the  Dr. I wanted at McKay until late Dec. and my leg was getting worse.  So Melainie, who has a slight pull with a neuro surgeon in Bountiful, helped me get into him, Dr. Brent Clyde. Kim hand delivered my MRI to their office, I was in within the week and told the MRI didn't look good and that I  needed surgery soon and it was scheduled for Dec. 2nd.

After the surgery Dr. Clyde came and said everything went well, But....(that BUT started a chain reaction that has literary changed my life and the life of my family) the anesthesiologist drew some blood during surgery and my Calcium level was 15, high normal is 10, so I needed to get into either my primary care Dr. or and ENT right away,  maybe it was my thyroid.  It was early in the day so I called my Dr. and they got me an appointment for the next day with an ENT.  No explanation was given as to why he drew the blood, and when I asked a few weeks later Dr. Clyde said he didn't know why Dr. Rust drew it. I later knew it was a blessing that the level was drawn, but he either saw something he questioned or was in tuned! (side note for me I was having terrible stomach pain, I assumed I had an ulcer from all the Ibuprofen I was taking for the leg and back pain). 

The ENT wasn't too impressed with the calcium level and said this can't be right, we have people come to the ER with a level of 11 and they are unresponsive or incoherent so lets draw it again and see where it is. The next day I got a phone call telling me my level was 16 and I needed to be admitted to the hospital, there was something wrong!!!!

In my mind I was thinking thyroid, I hadn't looked anything up, I had just had surgery, I was feeling like Hell and my stomach was becoming worse than my back surgery, my left leg seemed a little better but still hurt to walk on it.  The hospital experience is a bit of a bluer.  I know I received shots everyday to bring the Calcium down, and they were so very painful that I would just cry a little each time.  I had lots of test and xrays and blood work.  I was fortunate  that when the bone marrow procedure was to be done they gave me a little Versed (the quick to sleep an wake up and never remember a thing medicine), because I already had an IV and they knew me.  They biopsied my thyroid, checked my kidneys, lungs, and I'm sure other organs.

I actually don't remember this, but at some point they told Kim that I probably had Bone Cancer, I really don't remember hearing that, but I remember being told if it was coming from one spot or organ then we would have had to talk "Hospice" not treatment. also I was having all the stomach pain, so I needed and EDG to make sure there was no cancer there.  But after 3 days I was told by a very nice and compassionate Hospitalist, Dr. Cory Anderson that I did have Cancer and it was called MM. That changed everything.  Still not know anything much about MM, he did tell me it was treatable but not curable!  It didn't have a long life expectancy but I would need to start chemo.  That takes some time again to wrap your head around.

I was still getting Calcium treatments and IV fluid and having blood drawn and new information everyday and talking to family everyday over and over with the same story.  I was becoming so exhausted trying to understand this new medical problem and figure out what was going to happen to me.  My kids and Kim were frantically looking everything up they could and I think talking with each other.  I was just crying (which I still am), and letting them tell me what they were learning about it, my thoughts went to hair loss, "moon face" (from high doses of steroids), my job, my strength, I was still so very very tired all the time, seeing my grand kids grow up, I still have some yet to be born.  Just the normal ping-pong-ball brain activity that comes with something new.

This has gotten too long, so I'll stop here for now.