Saturday, October 27, 2018

Scan Results

The house has progressed a lot this week, we got the rest of the flooring done on Thursday, which meant that we could get the appliances installed today, which means we can finish the kitchen (countertop) and start putting our lives back together.  My friend Dawnette has come and spent so much time helping me hang blinds, shop for the little things I needed to get, helped me brainstorm solutions to various problems, helped me rearrange furniture until it was just right and hang pictures.

I've had my head wrapped up in other things and hardly had a chance to worry about Wednesday's CT scan.  My appointment was late in the day, so I wasn't too concerned when I didn't get a call yesterday.  Late last night I got on my chart and saw results for the Echocardiogram (normal) and the chest part of the CT scan.  Everything looks good there!

What I didn't find was the report for the abdominal part of my CT scan.  That's the one I'm most concerned about right now.  That's how they track what's going on in my liver and surrounding organs.  That's where they watch what's going on in my bones.  This was the first full cycle since we took Perjeta off my treatment plan. I've been so nervous about making the call to cut it out because it was working, but not worth the itching misery.

When I got to Huntsman today I expected to get the hormone shots and pick up my study drug.  That turned into a 4 hour ordeal and a lot of sitting and waiting on various things.  There was confusion about the injections because I didn't show up and get them last month.  I'm pretty good at showing up when they tell me to, but for some reason it wasn't on my radar.  They told me Dr. Prystas was coming in (on her day off) just to see me.  So then my mind imagines the worst, that she didn't post the other report because it was bad and she wanted to talk to me in person.

As it turned out, she just forgot to post the CT report to my chart.  And the scan results were good!  I think she probably came in to work out with the study coordinator what to do with me because things were thrown off by me last month.  UNCHANGED is the word I love to see! It's still there but it hasn't changed.  ðŸ˜Š

1. Small hypoattenuating lesions in the liver are unchanged compared to 8/1/2018. On prior studies these were larger and compatible with metastases.
2. Unchanged patchy sclerosis within the left iliac bone, concerning for metastasis.

Thursday, October 18, 2018

Blessings of all kinds

I learned just after I was diagnosed that I, as a stage 4 cancer patient, would qualify for Social Security Disability.  I never got around to applying because I didn't want to deal with the hassle of a government agency OR the waiting game.  But as the season wrapped up this year, I thought I'd better look into it to get a little dough coming in from my side of the equation.

Three weeks ago, I finally got on and set up an account.  I found that the application, while redundant (asking the same questions again and again), was easy to fill out and submit.  THE NEXT MORNING, I got a call from someone at Social Security.  He asked me a lot of questions.  At one point I thought to myself, "Man, I hope this guy is who he says he is because he could steal my identity in one second with everything I've told him!"  He clarified dates, diagnosis, when the disability began, etc.  I asked if he wanted my medical records.  He said he didn't need them (what?!?) and he would get everything submitted right away.  And he was really sorry about my diagnosis and wished me the best.  I honestly didn't expect anything to happen for months.  Government Bureaucracy and all.  But this week, we had a deposit in our checking account for 12 months of disability back paid to when I was diagnosed.  We were shocked!  How is it possible that the government can be so efficient that they get me approved and paid within 3 weeks of my applying?  Nothing short of a miracle and God's Tender Mercies.

I haven't worked full time since Maddie was born, but have done enough with my business and my part time gigs that I had the credits I needed to qualify.  I won't get a lot each month, but enough to help the budget some and take some pressure off.  What a blessing!

We've seen many blessings since we got our house.  So many people have been here helping us accomplish what needs to be done.  Mat said he was looking around at church last Sunday and counted 34 people who have been at our house helping with everything from removing carpet, the old kitchen, framing, sheetrock, wallpaper removal, mudding and sanding (it felt like we did that at least a hundred times), installing cabinets, helping with electrical, etc. etc.  Our neighbor told us not to worry about moving in before the kitchen was done because we could eat dinner at her house every night until we are done.  Another friend has been here every day this week helping me with my list of things to do and shopping for things we need.

And for those of you that have struggled with the paper backing from 47 year old linoleum glued to subfloor, we threw in the towel today.  After trying every adhesive remover on the market, sander, steamer, and heat gun remedy we found on Youtube, it's still there, and there it will stay.  Tearing out and replacing the subfloor was NOT an option with everything else going on.

I worked my tail off last week moving as much "small" stuff as I could.  Seven months ago I registered for a breast cancer retreat in Park City, long before I knew about moving!  The retreat was organized specifically for my stage 4 support group at Huntsman.  So I already knew most of them, and by the end was friends with all of them!  The foundation is called Image Reborn, they provide 3 day retreats to breast cancer survivors for free, all through the year.

I felt so guilty last weekend not helping when everyone was here moving our stuff - and I was at the retreat.  But I'm telling you, I needed to be there.  Mat asked me if I could get a ride because he knew he would need both cars getting things moved over.  I arranged a ride with my friend, Tina, who is in the group as well.  I didn't know until we were on the way up there that she needed to leave a little early on Sunday morning to get back for her Primary program.  She was happy to bring me home again, but I hoped to stay until the very end.  The last activity of the retreat was a Shoshone blessing.  I really wanted to see/experience that so arranged for a ride home with another friend.

My friend, Mieke, is married to a Shoshone Shaman.  He is considered a "medicine man" or a healer.  He explained that the "Great Spirit" is their name for God, just as some refer the the "Universe" or "Allah" as God.  To us he is Heavenly Father.  Sage (sage brush) is a very important herb for many native American tribes, including the Shoshone. Sage sticks are burned to produce smoke that cleanses and heals.  The process is called Smudging.

I took this off a website www.warpathstopeacepipes.com.

Smudging is a traditional Native American Indian method of burning herbs to produce a smoke cloud which is used in various cleansing or prayer ceremonies and purification or healing rituals. Cleansing rituals involving smudging often initiates healing sessions.  The smoke was believed to disperse impurities allowing the healing process to commence. As the smoke rose it was believed that prayers would also rise to the Spirit World and negative thoughts and emotions were lifted away.  The Shaman fans the smoke over the person using his hand or a feather to disperse the smoke toward the Great Spirit and the heavens.

I loved experiencing this new culture!  He explained what the blessing means and how the sage plays into the ceremony.  Then he told us that when he does a group like this, he meditates to see if he can discern the needs in the group.  He said as he was coming up the canyon and meditating, all he could see was gray, fog, he couldn't see through it.  He knew that there was one in the group that was in real need.  I could have, at that moment, raised my hand and announced that it was me.  But I didn't want to take away from the Spirit or the needs of the other members of the group.  Because maybe, I thought, I wasn't the only one with big struggles right now.  So I said nothing.  He came to give a blessing to each of us individually, as he went around the room he spoke Shoshone and dispersed the sage smoke over us.

He started on the other side of the circle, blessing each person in Shoshone, burning the sage and waving the smoke toward the sky.  I was the last one in the circle.  When he came to me, he immediately sensed it was me and acknowledged that.  He was emotional as he felt the weight of my/our burdens.  My blessing was a little longer than the others as he burned the sage and waved it toward heaven.  We talked after about what was going on in our house and he offered to come and cleanse the house and do a salt ceremony.  I'm going to take him up on that after things are put back together.  I think it's similar to when a priesthood holder dedicates a house after you move or have a need.  We'll do that too!  I was grateful for his concern and the time he took to talk to me after the ceremony.

We are having a real struggle with Isaac.  There's quite a bit of negative energy being heaped on us right now.  We're working through it the best we can.  PLEASE keep us all in your prayers as this challenge affects the whole family.

Monday, October 8, 2018

House Progress and other stuff

This is a drastic improvement from how it was before!
So much wallpaper from the 70's and 80's was removed,
it was so dingy and dark.  It looks so much better!
I haven't written in a while.  We've been so busy trying to get the house ready.  The walls took forever.  There was wallpaper on every surface upstairs, except in the bedrooms.  It took so long to get if off, repair walls, mud, sand, mud, sand, and then do it some more.  A couple of times we had a small army over to help with painting.  We could not have done it by ourselves!  But they're done now and we are finally moving on to flooring and kitchen.  Never mind that we committed to be moved out of the condo by the 15th.  And no one has started packing yet.  I've had a long list of things written down that we/I need to get done.  Tonight I threw it away and wrote only the things that I need to do.  I feel a little better about the project now.  The other night I was talking to my friend, Kelly.  She assured me that we can move in with an undone kitchen, because we can eat at her house every night until we have one.  My friends are so cool!

This week we're hoping for flooring, kitchen install (by us and a few friends), new toilets, plumbing fixtures, etc. etc. There's still a lot to do . . .  we'll get there.

I found this picture on wendyvonsosen.com tonight.  This says it all.  We're dealing with some serious challenges with one of our kids.


These are challenges we didn't see coming, but it makes total sense now-hindsight is 20/20.  I don't feel comfortable sharing gritty details.  Maybe when things smooth out a little bit.  Suffice it to say that this situation is way harder than cancer.  If you can just remember this one thing every day, in every interaction: Everyone you come across in your life is fighting a hard battle.  Be gentle, don't judge, and LOVE WITHOUT RESERVATION.  Love, love, love.  That is the key.

My friend texted me about a seminar that was going on at Bountiful High this week.  Mat and I went, we came away with so much valuable information!  It was put on by the man than runs www.listenlearnandlove.org.  Tom Christofferson was there, as well as parents of a teen boy from Bountiful that committed suicide 6 years ago.  Friends, we've got to do better in Utah.  We've got to do the things I listed in the last paragraph.  Be gentle, don't judge, and love.  You have no idea what someone has gone through in their lives to get to where they are today, not unless you talk to them and love them without preconceptions and judgement.  I didn't have to think about this until about a year ago.  I never considered how hard life is for someone who is a square peg, trying to fit in a round hole.

I had two positive interactions last week with transgender women.  So random!  One was when I responded to an ad for a bathroom vanity.  The other was when I met Catherine at the seminar on Thursday.  I talked to her for a good, long time asking her questions about her life and how she got where she is today.  She is active in her Bountiful ward, they love her and accept her for who she is.  I was so happy to hear that!  I don't think that's the experience most LGBT have here.  We don't have to agree with the lifestyle, but we do have to LOVE!  More later, it's late!

p.s.  I didn't say any of this because I'm perfect at it.  I've got SO much work to do.  I'm no different than anyone else!  Just want to make that clear!