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!

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.

   

Busy Month

When people say "I just don't know where the (month) went" I usually think they are so silly, but I seriously don't know here July went.  I do have pictures to prove I was here.  We started out in California with Jodi and her family, previous post, and then right into Kim's surgery.

He has done amazing.  Someone told him he's making it look too easy, but he would tell you it has not been easy.  He learned with #1 that he did too much, so the second time around he has followed Dr. and wife orders to rest more and keep them up.

       Resting and wathcing TV is something he HATES.  He and we have watched a lot of Movies, but I think he might be hooked on HGTV.  He likes the remodeling shows, the flipping homes and especially the House Hunters International.  I offered to teach him crocheting but he declined.  He has done a lot of reading, but pain pills make it hard to concentrate.
 

 But they are healing great and he is faithful to do his exercise and follow the home Physical Therapy suggestions, he is anxious to get back to work.  He has a 70 year old co-worker who had one knee 6 weeks ago and had an absolutely horrible time,   he has come to see Kim after both surgeries and is so jealous and is not  looking forward to his #2 this week.  But age and being fit before hand plays a lot into it and Kim had both going for him.

 In between all this it was also his birthday.  His actual day was very quiet and simple, just dinner and cake with his mom.  We celebrated the week before with all the kids, at our bi-weekly Sunday dinners.  I forgot to take pictures.

 The 24th was a real nice and relaxing day too.  The kids and Mel and I visited Kim and then meet Gordon and Jessica at a fun little park near the river.  Shade, toys, water and a few snacks what a perfect morning.

 Later in the evening, still light, Mel and I did a few fireworks with the kids.  Kate is not a fan of the noise, but Hyrum just wanted more and more.  For big kids it would not of been considered much, but for a         4 1/2 year old they were sure exciting.

 I have no idea why the boys have such silly expressions, except they were asked to pose for yet another picture, on a Sunday no less, in church clothes, but Kim and were in their ward Sunday to be a part of each of them being set apart for new callings.  Matt as Second Counselor and scout master in the young men's organization and Gordon as the Second Council  in the Bishopric.  They are both terrific young men who have alot to offer those who they will serve, and they have beautiful and amazing wives.  My prayers are with them along with my daughters and their families. 

I've blessed beyond measure and I pray that I am always worthy and and show my thanks for my blessings.

Stuff that goes on.

  NEW JOB after 18 years in the same place, with the same type of patients. You would think that that would mean not much change, but that of-course is not true, not true at all. I was comfortable in my position, probably knew a lot, would teach even more and learned something new almost every day. I was in a leadership position, with OK perks, like less weekends, less holidays, ceilinged pay, had somewhat of a voice in how things were done. But I changed anyway. NO weekends, NO holidays, easy to get days off if needed, better pay and room to grow, not so much of a voice, but I am trusted to make decisions for my patients, without a lot of close supervision. So wish me luck, I’m happy and still learning tons of new information every day and getting comfortable, and gaining confidence.

Changes at home. Kim hates, hates, remodeling, but I am always thinking of the next big change. I have slowed down in my later years. I now I hate messes, and we’re not sure how much more we should invest into our home. But with that said Kim did a great job on the new fireplace front and TV installation. Now we are just waiting for the new Gas Fire-place insert, which may be closer to fall, but it looks nice and I love the new furniture.

 New Knees. Kim has been suffering with bad knees for way too long. So he did it, first the right knee then the left, I hope and pray that he does well, he is very determined to get back to doing the things he love, without pain. He has still hiked, but with pain and he never really knew if he’d be able to get back down the hill. Now if he can just get the braces off and enjoy a Texas Roadhouse Stake I think he'll be good for awhile.

Big move. Taking Jodi’s family to Roseville, CA was hard. She has a lovely home, not everything she wants, but she will make it cozy and comfortable, not only for her family, but for friends, and those dang pesty relatives. She has already embraced the ward and will do the same with all the eateries. Trevor has taken precautions for the unwanted pests that might roam near-by also. Thank goodness for Face-time, instragram, text, and emails, or else I wouldn’t have allowed them to take Stella with them.

I love my family, the gospel; I’m having a good time in primary, being with the grandkids and any activity that will bring everyone together. The 4th - Flints going away party was so much fun, and almost everyone could come. I know if mom and dad are watching they are happy that their children have stayed close and enjoy being together. I hope it last forever.

Roomies

This has been a fun, and eventful 6 months. 

Kim and I took in room-mates for a few weeks and I have really really loved it.  I've had someone to talk to most nights, with Kim he is often gone, Jodi and Stella have been great companions.  Trevor will talk too, but I still think he'd rather not. They were able to have their private space in the basement rooms and I never once heard Stella, Jodi or Trevor cry at night.  

Stella had such an eventful pre-birth and birth, it has been a blessing too have her close.  All our kids and grand kids are a blessing and I love having them in our lives as much as possible.  I've just tried not think about them moving away, and being able to watch the changes, but this will be a blessing for them, and a great experience for their family.

 I've had other mom's say things like my daughter would never move away from me, I wouldn't "allow" my kids to move out of state, really?  I wouldn't be able to stand it if my kids moved, anyway on and on.  I've thought a lot about this, and I wouldn't want my kids to think I thought this way.  Because I did with mom.  

Mom never came right out and said "don't ever move", she would never do that, she only wanted what was best for all of us, but deep down somewhere I felt that way, that I couldn't leave.  I put that on Kim also.  He tells me he has always wanted to stay, but I am pretty sure that was not the case.  With his job, to move up and make more money meant moving around.  He watched guys do the moving thing and left debt behind, with homes that didn't sell, kids that could'nt move, wives who were frustrated.   Plus I always felt I needed or wanted to work.  There have been so many factors that have played into our lives, so here we are, and I am Happy, I always pray the others are too. 

Bottom line I will not put any pressure on my kids.  Jodi knows this is a sad but exciting time for all of us.  What a thoughtful plan the lord had in store for us with families.