Sunday, June 28, 2020

Raw. Honest.



Right now I have my youngest in bed with me (Tuesday night).  She has so much anxiety built up in her soul.  School closures, earthquakes, pandemics, riots, my terminal cancer ... It's all more that she can manage.  Honestly, it's more than I can manage!!!  I've been saying for a couple weeks that I would call the pediatrician and get her into a therapist there. I never did it and I feel horrible. She hasn't been able to sleep good for a while now.  Her birthday is on Thursday, we're leaving to go camping that day.  So tomorrow night we're having the school friend party, we'll have the party for neighborhood friends after we get back next week.

I am in constant pain.  It's funny, my ribs don't bother me at all, but my hip bothers me every minute of the day, it's really slowing me down and making it harder to accomplish the normal stuff that hasn't ever been a big deal.  It's super depressing, it's affecting everyone in the family.

We got back last night (it's late Sunday night now) from camping at Zion NP.  It was an amazing trip.  We spent 3 days there, roasting like the marshmallows we couldn't roast.  It was triple digits all week, so HOT being surrounded by those beautiful rock walls and formations knowing that you must be getting another 10 degrees reflection off the rock.  Fire danger is extremely high down there, so no fires or briquettes. Every night at 9:15 they do a presentation in the amphitheater.  The first night was the geology, how Grand Staircase happened over millions of years.  The second night was about light pollution, and where to go if you really want to see the stars!  The Virgin river ran by the campground, so the kids spent quite a bit of time there staying cool.  Mat is such a trooper.  Thankfully we have a propane stove in the trailer, so all the cooking was modified and cooked in the trailer.  I know Mat is feeling a different kind of pain than me.  He knows I'm in pain but feels helpless to know how to help.  He took on the brunt of the chores when camping, helped with the meals, planned out things to see and go on one hike, but no more when he saw how hard the first one was on me.

After making reservations at Zion early this year, I thought it would be cool to re-attempt what we tried to do 24 years ago.  We had only been married about 9 months and went to Zion as our "first camping experience" AND our "first vacation."  We wanted to hike to Angels Landing - there's something about hanging on to chains attached to the cliff so you don't fall to your death!  This is when I learned something about Mat that I hadn't known previous to that trip.  He's terrified of heights!  Or maybe it's just the heights that require some skill in walking along the edge of a cliff hanging onto chains.  In 1995, I wanted to go on without him, so I could say I had done it! But he pulled me back because he was freaking out about me going without him, even though I knew I would be fine!

Six months ago, I could have done these hikes, albeit quite a bit slower.  That has been the game plan all along.  We should try to get to at least Scout Lookout, if not all the way up Angels Landing.  I was confident I could do it, but not now with that pain in my hip.  The one hike we did go on was to the canyon overlook.  It takes "normal" people an hour to go round trip, it took us longer than that.  I was a little paranoid about losing my footing, going up and down.  It wouldn't take a very serious fall to break bones.

I'm taking McK to the pediatrician on Tuesday and already have the preauth from the insurance for the counselor she has in her practice.  So, we're in good shape beginning to help McKinley with so many hard things that she's going through right now.  She's moving to the neighborhood school, I don't even have her registered yet!  I picked up the packet earlier this year and then everything fell apart.

So, life rolls on for us.  We have one more camping trip in a couple of weeks, and a trip to Lake Powell the end of July.  The cruise Maddie and I were scheduled for in August was cancelled.   The thought of flying into Miami and cruising in international waters was kind of freaking me out, so I'm grateful, but bummed because it feels like our traveling options are so limited.  There's so many places we can't even go in the states because we live in Utah (with high Covid numbers).  It's bumming me out - I just want to travel and make memories with my family while I can!






Sunday, June 7, 2020

Council of Dads

I knew I had to watch this show
because Tom Everett Scott also
starred in "That Thing You Do,"
one of our favorite movies!
I don't know if anyone else loves this show like I do.  It's about a family ... it's complicated.  Dad died from cancer in the first episode.  He proposed an idea to his wife as cancer got worse, about setting up a "Council of Dads," three of their friends who will help his family with stuff after he's gone. I love that concept, the council of Dads!  In the most recent episode, one of the daughters, an adopted daughter from China with a heart condition, needed surgery to fix something. While she was "out" she dreamed that her Dad came to her, and she realized after talking to him that it was OK to be true to who she really was.  There was a tender exchange between them before she woke up.  Now, I've had enough surgery in my life to know that there are no dreams going on during surgery, just blackness.  But it gave me hope I will have a similar influence on my family after I'm gone.  Long before I knew about this show, I had already put some thought into which one of my friends could help Mat and the kids with specific things they'll need as time goes on, a sort of "Council of Moms."  Our current joke is that McKinley totally got out of 5th grade maturation, so Maddie has agreed to take that on!  ðŸ˜‚  But she'll probably hear from her parents too.


Friday, June 5, 2020

This weeks scans

I don't have a lot to say because I did all my venting in my last post, but here are the results of this weeks scans.
  • No findings of metastatic disease in the abdomen or pelvis.  
  • Sclerotic of the fourth rib and a few small pulmonary nodules are unchanged.  No new/growing pulmonary nodules or thoracic lesions are identified.
  • Stable metastatic lesions involving the left proximal femur and left anterior fourth rib.  New and old posteromedial rib fractures are traumatic in appearance.  No new bony metastasis identified.
In other words, nothing has changed since the last scan!  What struck me when I was reading the reports is that there is no visible cancer in my liver, where this all started.  It gives me hope--I know my team is doing everything possible for me and I'm so grateful!  My left rib very rarely bothers me.  My left hip bothers me all the time, I feel it with every step and stair I take.

Dr. Buys told me we could try radiation on my hip, but I'm not ready to jump to that yet.  Honestly, I'm tired of treatment (I'm NOT stopping treatment!). I spend a lot of time up there, and the last few months it's just been a drag!  If I could do the things that keep me sane (acupuncture! massage!) in all of this, I might feel different. But I am so done with isolation, quarantines, masks and paranoia (my own).  Being in constant pain, even as minor as it is right now, is exhausting.  The only thing I can take is Tylenol because it is the only pain killer that doesn't thin the blood.  I take Eliquis (a blood thinner) already to prevent blood clots.

Poor Mat sat in the car in the parking garage today.  He drove me because it was an early appointment. He wanted to come to my appointment, but it's not allowed.  So I put him on speaker phone when Dr. Buys came in to talk to me, then he had to wait and wait some more while I waited for the pharmacy to my study drug together.  I really am exhausted ...

Wednesday, June 3, 2020

Camping, but not in the Bahamas

I've been feeling the stress of this week build for the last couple of weeks.  I knew this was the week for my regular CT scan and follow up bone scan.  I knew that another month has passed with all of the support services at Huntsman cancelled, with no end in sight. I knew that, even though Mat wants to come with me to talk to my doctor on Friday, he can't. We may try to FaceTime him in while he sits in the car. I hate that I have to carry my cancer largely by myself. We have a Zoom support group every few weeks, which I feel is about 30% effective for me, compared to sitting in the same room with my warriors, face to face.  I know Lisa is doing the best she can under the circumstances!  I saw my acupuncturist on the way to my EEG today.  It was SO GREAT to see her! I can't wait to get back to it.  She'll have her work cut out for her-I'm kind of a mess!

I sent an email yesterday to the social worker that runs our group.  I asked her if it was OK to organize my own little gathering, friends meeting at a park somewhere with sack lunches, so we can see each other and talk.  No one at Huntsman can be involved with coordinating or attending a meeting outside the hospital.  But I'm willing to take it on if everyone up there is onboard! I don't want to burn any bridges with the people who are keeping me alive!

I saw my across-the-street neighbor tonight for the first time since she had her baby girl.  She's beautiful, even from an appropriate distance! I thought I was doing a good job of camouflaging the "overwhelm" I feel everyday. I wasn't. I've had a really hard time since my last scans. I knew as time went on, the honeymoon (no evidence of disease) would end and cancer would spread. It's very common for breast cancer to end up in the bones.

I get my therapy in the yard. I can't believe that we have mostly completed everything in the yard that needs to be done, before Mat would normally be done with school! The last thing to do is prep for the 6 foot solid fence that should be coming any day? Next week?  I want to hang a porch swing from our deck, and get a rope swing or two in our giant maple tree.

We got the garden box planted kind of late, but things are starting to take off.  McKinley really wanted to have a place to plant food in the yard. The fence will keep the dogs out - they love soft dirt and pulling (and eating) sticks from the wood pile. Mat ran drip lines to the garden bed and the bed along the back fence. We have tomatoes, potatoes, basil, chives, zucchini, yellow squash and green beans. I put oregano and rosemary in pots.  See the overgrown fence in the background? That's next years project. The neighborhood rats will have to find somewhere else to live!

We have 3 camping trips planned for summer so far, at Bryce Canyon, Zion, and the Spruces.  In August me and Maddie are going on a short cruise to the Bahamas. I'm not gonna lie, there's a fair amount of stress related to that too! Hurricanes, quarantines, motion sickness, airplanes? Please tell me we'll get there, have a blast, and then get home again without any problems!

I'll get the results of the CT scan tomorrow, and the bone scan on Friday.  I may do a brief update tomorrow, or maybe wait until Friday when I have all the information? Not sure.