I hope he forgives me for this post!

First of all, I just want to report that if you look really close, I have tiny eyebrow and eyelash hairs coming in!  I'm not saying I wouldn't be happy with falsies because I'm ready to look "normal" again (whatever that is!).  My hair seems to be filling in and growing, albeit at a snails pace.  Progress is good!

One of the projects I want to work on is digitizing ALL of our scrapbooks.  Over the years (when we didn't have all the kids yet), I made about 20 of those 12x12 Creative Memories books.  They are heavy, thick, bulky, and a pain in the neck to store and move!  I'm going through them to pull out only what's the most important.  McKinley has no idea what a baby book is, and Brooklyn is "bitter" because I started but never finished hers!  She's 13.  😜  Don't take it personally, girls!  You'll understand when you are Moms!  I'm going to go to the Family History center and use their high speed scanners to digitize the stuff I have before 2004.  That's 10 years of marriage and two kids~yikes!  I need to get on it.

Tonight I looked through our wedding album and first year.  It's SO SAPPY!  But so fun to go back and see.  We loved each other so much!  We still do, by the way.  It's just a little different after almost 24 years of marriage!  My heart aches for Mat right now.  He's so busy at school, spending about 12 hours a day away from home everyday.  That's when there are no events or activities he has to be a part of in the evening.  He feels overwhelmed and discouraged by how much he feels he isn't accomplishing, at home and at school.  I worry about him a lot.  He doesn't have the energy to put into dealing with my cancer.  I try to get him to talk to me about it, I encourage him to go see Annie (social worker at Huntsman), to journal or start a private blog.  Just so he can articulate his worries.  It's much easier for me to do than Mat, with the hours he spends away from home.  When he gets home, he's got nothing left to give.

This is one of my favorite pictures from our
photo session in the fall.

I call myself a realistic optimist.  I have hope for the future, but I also need to prepare (i.e. digitizing scrapbooks) for what could happen.  I have to make the very best of every day I have.  I don't want to be in denial and procrastinate things that are important to me, and then have it be too late.  I'll do just about anything to prove my preparation wrong!  And it will feel great when I can cross those things off my list.  Mat doesn't seem ready to talk about what could happen.  And I can't blame him!  I bring it up sometimes because what I do is talk through hard things, and he's always been a generous sounding board for me.  I just want to be the same for him.

The kids seem to be doing OK.  When I'm OK, they are OK.  And I try to be OK regularly!  Friends, Mat desperately needs an army of supporters.  He needs prayers and love like never before. My illness and treatments are a heavy burden on him.  Will you join my prayers with yours for him?

Liver Enzymes

"The Lord shall be unto thee an everlasting light..."
Isaiah 60:19

I'm grateful for you, my friends an family, who have rallied around me and my family, who show love and concern whether things are good or look kind of scary!  I could NOT get through this without you!

I talked to my nurse this morning and found out there's a couple reasonable explanations for AST and ALT to suddenly rise.  First is dehydration, which is totally feasible.  I have my water bottle with me constantly, and sip from it all day long.  But I'm probably still only getting half the water I should everyday.  Second is a change in treatment.  Dr. Prystas switched me from a pill form of hormone therapy to one that is injected into my back side.  It's called Faslodex and in a small percentage of women, it causes liver enzymes to rise.

Fear is my need to try to control things.  I don't know how high those numbers will go before the I'm in really bad shape.  But I'm not ready, I have too much to do, to many projects to finish, too many miles to travel, too many memories to be made with my family!  Faith is knowing that Heavenly Father knows that, and that He'll give me some time.  If there is a blessing in cancer, it's some time.  Nathan Pacheco sings a song called "Come As You Are" which is amazing!  If you haven't heard it, you need to!  My favorite line is "Earth has no sorrow that Heaven can't heal!" I truly believe that.  He's aware of us.  He can take away my fear and help me have faith.

My *$(@~% Liver

I went for chemo yesterday, my sister Mel came with me.  That was fun!  She's very busy and has a lot on her plate, so I was grateful she took the time to hang out with me.  💕 Things started out weird in that my blood work was never ordered, so I didn't get blood results for this week.  And we waited and waited for the chemo to come.  The infusion itself takes 1 ½ hours, but we were there 4 ½.  I also didn't get to see Dr. Prystas this week.  That's hard because sometimes I just need a pep talk!

Last night I got looking at my blood work from before.  A comprehensive work up has a long list of abbreviations that I don't understand.  Anytime something is listed "high", I find out what it is (google) so I can understand a little bit more about what might be happening.  AST (aspartate aminotranferase) and ALT (alanine transaminase) were both high on my most recent blood panel, so I looked up what they meant (deal with liver function).  High is bad, low is good.

I pulled up results from all previous blood panels, and compared them with my most recent. What I found wasn't terrific.  My very first panel listed ALT at 104, and AST at 77, which is high and bad because ... cancer in my liver!  Makes sense.  All subsequent blood work showed these enzymes way lower and in the normal range (Thank you chemo!).  My most recent blood work from last week - May 16th - showed the ALT going from 13 the previous week to 77 last week.  Bad.  The AST went from 15 the previous week or 43 last week.  Also bad.

Of course I'm looking at this late last night, so all I can do is wait until Monday to call my nurse.  I've been kind of a mess today, the lack of answers I need is excruciating.  Maybe these numbers won't amount to much, but until I know that for sure?  Torturous.  Why would they jump so high in one week?  What does it mean?  And what do we do about it?!  I'm praying there's a reasonable explanation for it.

My silly rant. And more input!

I've been thinking about my little FB rant this morning.  Having to sit and wait for a tow truck.  Are you kidding?!  Poor me!  I think there's a thousand other things to worry about that are way more important than that.  I'll keep that in mind the next time I'm "inconvenienced"!

I got an email today from Little Pink Houses of Hope.  It's an organization that does family retreats all over the country for stage 4 breast cancer.  We're going to Sedona, AZ for a week in June!!!  I'm so excited!  And I'm sure all my other Ulmers will be so happy about it.

I'm curious to know how you people, my friends, handle teens cell phones on family vacations.  We have our EPIC trip in July, and now this one.  I'd like to say "no phones" for both trips, so we actually see their faces occasionally, and not just the tops of their heads.  I tend to feel a little selfish on this subject.  I want to make the most of the time we have together, because our time is finite.  I don't want there to be tension when "I" suggest they throw the phones out the window and participate with the family.  Know what I mean?  Input please!

p.s.  I'll keep FB, but only because people said that's the easiest way to know what's happening with us!  😎

Chemo Brain!

Tonight McK has been reminding me to call the school to see if I still have a background check on file.  She has a field trip next month, and desperately wants me to come!  After about the 6th time, I reminded her that I can't call until tomorrow when someone is there!  She said, "But Mom!  You always forget stuff!"  That I do.  Chemo brain.  It was a stark reminder of one of the more subtle side effects I deal with.  Sometimes I feel a little unreliable, most of the time I can fake my forgetfulness, but my kids pick up on it!  😞

I've had a good week this week.  Saturday night we got together with Mat's family to remember his Mom who died 5 years ago on St. Paddy's day.  It was really nice to sit around and talk about special memories of her.  Mat's dad is perplexed about why he's still around, and wants nothing more than to go be with her!  He turns 85 in July, his mother was 93 (?) when she died.  I think he has the longevity genes, because other than a very painful back, he's in pretty decent health.

Sunday I actually made it to church on time and stayed the whole block.  Nine o'clock church isn't my favorite, especially now that sleeping is difficult.  The two infusion drugs both have insomnia as a side effect, it takes me a long time to shut down and get to sleep.  I've been a little inconsistent getting there on time this year!

I worked at the nursery today and made it through my entire 5 hour shift, first time this season!  I was pretty hammered when I got home and haven't done anything since,  but hey!  I'm feeling a little closer to normal, I just don't look normal.  Oh how I want my hair back!  My oncologist said I could do micro-bladed eyebrows if the ink didn't have metal in it.  Metal in it??  Apparently that's a thing.  They don't want anything injected into my skin that could mess up CT scans or MRI's in the future.  Now I just need to find the $$$.

Yesterday my friend Sharla called and said she would be in the neighborhood and wanted to go to lunch.  I'll always go to lunch with anyone that's willing!  We went to Plates and Palates and talked for a long time about stuff, and then came and sat in my driveway and talked about more stuff.  She's a great friend!  Thanks Sharla!

Last night the family went to the Rec Center.  You know when you pay for a membership but you only get there a couple times a month?!  The kids and Mat played racquetball, I lifted weights.  Just like I used to.  And did better than I expected!  I've spent most of the last 5 or 6 months sitting or sleeping and my muscles are mushy.  I was proud of what I was able to do and hope to get there more consistently and build up what I've lost.


I'm having a dilemma about Facebook.  I hate it!  I hate that they control what I see, and I only see a small portion of what my friends are posting.  And a whole lot of stuff I didn't ask to see.  It's such a waste of time.  Does anyone else feel this way??  I'd love to delete my account.  I'd rather connect with people than a profile.  How would I keep people updated on what's going on?  Would y'all think to just check the blog without me posting on my profile that it's been updated??  Because I REALLY hate Facebook.  Feedback please!  Because I really want to delete both my social media accounts.  I think I'll delete Instagram right now!

Blood Counts and other news

When I woke up this morning, I was really nauseated and my hips were just aching.  The good news is that my blood counts were up yesterday, so I started the study drug again last night.  They lowered the dose so it doesn't slam my immune system like it did last month.  It felt like I spent half the day there at Huntsman.  They did the blood draw, then you wait for the lab to post the results, then you wait for the study coordinator to give the OK to the pharmacy, then you wait on the pharmacy!  It's a process, but I had Regena with me, and together we make things fun.  😁

I was at Huntsman 3 times this week.  I had an awesome visit with Annie, my social worker.  She just has a way with helping me process this wretched situation I find myself in.  We talked about ways to make the most of the 3 month cycles I have, between my CT scans.  I want to try to get away with the family often, even if it's just a weekend.  The most important thing for our family right now is making memories!  I want to work on projects around the house, get the darn place painted, get the floor in the kitchen taken care of, and a few other things.  I just need to stay as busy as I can, so I don't think too much and let cancer overwhelm me.  If I can keep my life as normal as possible, cancer won't get the best of me.

This week was also the breast mets support group.  They are such a great group of women!  Every one of us is traveling a tough road, but we keep pushing forward.  The conversation did get kind of heavy.  A pharmacist there talking about drugs for metastatic breast cancer, she had them all nicely organized on a graph, which ones treated which types of cancer, what their side effects are, etc.  It was inevitable that we would also talk about what happens when drugs stop working.  They stop working because cancer cells outsmart the drugs (thus the scans every 3 months).  Toward the end, Dr. Buys suggested we leave on a lighter note and had us each tell the group about something we are looking forward to.  I was SO excited to share news about our EPIC SUMMER ROAD TRIP!  I left feeling happy and uplifted, despite the heavy conversation before.

I went to Shayla's funeral on Thursday, which in and of itself was very nice, a great tribute to a great woman!  I was so sad to find out what is happening with her kids.  They're being split up.  Hasn't there been enough trauma???  My heart is broken for them and I pray that God will watch over them.

Last night was Make The Magic, Camp Kesem BYU's biggest fundraiser!  Kesem has been such a blessing to our family.  My kids have attended this weeklong summer camp every summer since 2010.  They go have the time of their lives, make awesome friends and have fun, fun, fun!!!  The camp is completely free to families affected by cancer.  How could I not support?  It was a great night, great food, great friends, and they raised enough money for 50 kids to come to camp this summer!  

Angels, Seen and Unseen

One reason Shayla's passing has been hard on me is because the cancer took over her liver and it stopped functioning.   There was nothing more her doctors could do for her.  That hit me hard because my liver is the epicenter of the cancer in my body.  Realizing that the same thing could happen to me filled my soul with grief and anxiety.

I've struggled with Shayla's passing because of her kids are so young, and because she was such a great person who touched so many people!  It's easy to question (on the surface) why she was taken from us.  This one hits close to my heart because my kids are close friends with her kids through Camp Kesem.  She helped me so much when I needed information and support.  My heart breaks for her family, and so many others that have graduated earth life and left family behind.  I have too many friends whose families have been affected by the "early" death of a precious Mom or Dad.

One of my awesome friends called me tonight to reassure me and remind me of some great truths.  Heavenly Father is aware of what Shayla's family has gone through this week, and He will send people into their lives to strengthen and help them.  Her kids will be watched over, guided and blessed through angels they can and cannot see.  I have no doubt that Shayla is already hard at work on the other side giving her family strength.

My friend also reminded me tonight that God's plan for my (everyones!) life was predetermined before I came here.  Only God knows how long I will live.  I will "graduate" only after I have fulfilled my mission on earth.  I believe that my cancer is part of that mission.  I have great friends that I couldn't have met in any other way.  I have stronger ties to friends and family because of cancer.  My priorities have totally changed.  I can reach out in compassion to people who are struggling because of the compassion that has been shown to me and my family.  I'm more reliant on God than I ever have been, because I have to search for strength like I've never done before.

Beginning my day today, I felt despair and fear.  Tonight I feel  grateful for the plan God has for each one of us.  We don't get to choose our trials in this life, but we do get to choose our response and reaction to them.  We can choose resistance, resentment and anger OR we can choose acceptance, love and understanding.

I would still love me some eyebrows.  I researched micro-blading, that's what I would love to do!  It's so expensive though.  Our money needs to go towards our epic summer road trip 🗽  and improvements in our condo 🏡 so we can sell it.  So, for the time being, I'll be content with what I don't have on my face. 😜

Shayla

My friend Shayla died this morning.  My heart is breaking for her kids (especially), her family, and her friends who will miss her sweet smile, her spunk, and enthusiasm.  Her daughter is one of McKinley's favorite Camp Kesem friends, her camp name is Rosie. I was just showing McK pictures from Shaylas FB page, she is trying to process what it means that her Mom died.  Kids shouldn't have to worry about what it means to have a parent with a disease, or have to figure out how to process death.  Makes me sad and angry!  I'll get over the "sad and angry" part, but I don't like it.

With that said, I know it's a reality we all face.  My Mom and her sib's knew what it was like to live most of their lives without parents.  My Mom was 18 when her Mom died (24 when their Dad died), her youngest brother was just 2.  The good that came from that was that she and her siblings had to rely on each other.  They worked together and helped each other.  They've maintained a strong bond all through their lives.  They are one of the greatest examples I've seen of the family I want.

I know everyone has heavy burdens to bear.  We certainly have ours.  And I suppose we are given those opportunities for our growth, no matter what side of the trial you're on.

Mosiah 24:14 - 15

• And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.

• And now it came to pass that the burdens which were laid upon [you and me] were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.

I really believe that if we trust God, He can and will make our burdens lighter. A great friend shared the following quote with me, I have it on my fridge where I see it everyday:

"Let me remind you that there will come to you no trial, no tribulation that you have not been measured beforehand and found adequate to pass through.  I say that to you, because you will feel pressure and feel overwhelmed and wonder how you will do it, but you will.  And the Lord, who knows you better than you know yourself, will help you.  He will tutor you and strengthen you, because He loves you.        - Elder Neal A Maxwell

Sometimes these things are hard to remember when life is throwing trials at us.  I fall into darkness and despair sometimes.  I think those are the times when I think I can control the outcome, when I want to tell Heavenly Father how it should turn out.  If we ask for perspective, for peace, He'll help us through the hard times. 

Back in the Saddle

I worked my first day at the nursery yesterday.  It was great to be back outside and in my element!  I was scheduled for a 5 hour shift, and made it 3 ½ hours!  When I got home, I fell into bed and went right to sleep.  I'm currently scheduled for 15 hours a week, and will work Tuesday, Thursday, and Saturday.  My boss is awesome because he said I only need do what I'm up for.  If I can't get through a shift, or can't make it at all, to just tell him.  I took in a huge stack of business cards because me and my friend Jenny will do all the landscape consultations that come in through the nursery.  🌻

I had an appointment at Huntsman this morning, just a regular appointment with my oncologist.  I was also supposed to pick up the study drug, Palbociclib.  They couldn't give it to me because my blood counts were very low.  She said she'd never seen a number as low as mine today.  (Anyone have any ideas on how to raise blood counts?!)  I have to go back next Friday for more labs, and maybe they'll give it to me then, if my numbers go up.  Geri drove me this morning, and it was early!  I'm always so grateful for the people who take time out of their lives to bless mine!  I'm truly blessed!

We have Maddie home for spring break! She'll be working @ At Home and hanging with the fam.  So glad to have her here, we haven't seen her since Christmas break!  She is SO helpful!  Me and Mat have been gone all day, so she orchestrated the cleaning of the house, and it looks amazing!  Love this girl!

If God brings you to it ...

Gidget and Sharla

The Red Iguana in SLC, Strawberry Molé enchilada, and these great ladies!  I just love these two!  We worked in Floral at the church together.  We clicked immediately, we laughed constantly, and had SO MUCH FUN together!  It was great to see them again!

I went in yesterday for my "every third week" treatment of Herceptin and Perjeta.  Cari came with me which is always a treat!  I was pretty tired because the night before my arm, neck and shoulders were itching like crazy!  That, unfortunately, is a side effect of these two drugs.  It's miserable, I slathered on a steroid cream I got from my dermatologist, sprayed on the Benedryl spray and used hydrocortisone as well.  Nothing seemed to help.  I finally put on my compression sleeve to cover my arm and managed to get to sleep.  My being so tired made it hard to carry on the conversation we were having because I was dozing off.  😜  Sorry, Cari!  It wasn't you, it was me!  We went to lunch and ran a couple errands and had a great talk after my nap, which I was so grateful for.

This is a statement from our insurance.  Almost $31,000
for two drugs, every three weeks.  Gosh, I wonder why
healthcare  is so expensive?!  The pharmaceuticals
have a strangle hold on the system.

I was also grateful to get a visit in the infusion room from Annie, my social worker.  She's such a great lady!  I need to get in to see her this week.  I've been contemplating my life as I know it now.  When I had chemo every week, my life was very predictable.  I didn't really have time to do much except recover from the week before, and then hit it again.  Now that I'm every three weeks, I feel like I need to find ways to be productive.  It will help that it's going to warm up and I'll start up my business and working at the nursery.  There are some projects in the house too.  Mat said I could take a sledge hammer to the leaky shower downstairs, even though it will probably be a while before there's funds to replace it.  That will be fun! I'm going to start painting too, thanks to my cousin Jen who bought me the first gallon of paint!  I have a list of "long term projects" mostly related to our family and my personal history, updating and digitizing scrapbooks--stuff only I can do.  I'm currently downloading pictures from the old computer to my Mac so I can organize the scrapbook stuff.  I have tons of pictures to scan and a lot of documents to sort through.

I've been daydreaming about writing a book called "My Life Between Scans."  I'll have updated CT and bone scans every three months to see what changes, if anything.  The month or two before this current diagnosis I was trying to figure out what I wanted to do with my life.  I contemplated going back to school, but I couldn't for the life of me think of what I wanted to study.  I looked into jobs, finally taking one at J and J nursery.  I was diagnosed two weeks after starting that.  As I look back, I've realized it was no wonder nothing worked out because Heavenly Father knew what was coming.

My best days are when I have something to look forward to, something to do.  I have bad days sometimes, today was one of those.  Sometimes I just need to wrap up in my blanket on my bed and cry my eyes out.  It's hard to make long term plans when any scan could throw my life into another tailspin.  And it's hard to think that the rest of my life will involve cancer treatments.  I don't know if I'll ever get to figure out what I want to be when I grow up because this is my life now.  Even if I found that magic bullet that cured my cancer, I would still have regular scans and visits to Huntsman for regular follow-up.  In my despair this morning, one of my gardening friends, Jenny, texted me to see if I was home.  She'd been at Costco and brought us some tomato soup and that delicious parmesan herb bread.  I told her I was having a crack up, so it would be Mat that would meet her at the door.  In my need, she thought of me and did what she could do to help out.  Thanks, Jenny!  A little later, when Mat went out to run errands, I went with him and that helped me get out of my funk. It's always nice to clear a few things off the list of things to do and the kitchen counter.