The port, and other news

I haven't updated for a few days, because there hasn't been a lot to report!  Just the same roller coaster of emotions.  Sometimes I'm fine, and sometimes, I'm really NOT!  I spent about 7 hours at Huntsman yesterday, first for an echocardiogram.  Then I went to Radiology to wait, and wait some more to get my port.  My sister in law, Jeanne was with me.  I was so grateful for that!  She got through her book, and I WAITED!

My "Not Very Happy About How That Happened" Look

They couldn't get the IV started in my right arm.  "Too much scar tissue in my veins", they said.  I can only use my right arm because of the lymph nodes that were removed last time, so my left arm is off limits.  So they said they would do an ultrasound guided IV into the flesh of my upper right arm.  After about 10+ minutes of "fishing" and failed attempts, I lost it.  Just a few tears.  Apparently, the veins in my upper arm are as naughty as the ones in my wrist and elbow.  Finally, though, they got it and knocked me out and did the procedure.  "Conscious Sedation" is what it's called.  They monitor the vitals and pump up the drugs as needed.  By the time I got home, I was so emotionally spent.  I slept until a ridiculous hour this morning.

I remove dressings tomorrow

I spent a few hours doing landscaping at the house in Bountiful I help maintain.  It's amazing what pulling weeds and deadheading can do for my spirits!  I'm hoping to get my Farmington house done tomorrow.  Because Friday, the fun starts.  It's my last chance!

I sent Mat to the pharmacy last night to pick up one thing, but forgot to tell him that Kathy, my nurse called a couple of days ago to tell me she had called in the prescriptions I need to get started.  Lidocaine for my port (to numb the skin before I get there for a treatment) and three powerful nausea medications, because apparently, I'm going to need them.  I learned last time that you don't wait until you're nauseated to take medication.  You have to stay in front of it, to prevent it.

We did this Sunday afternoon, because when there's wind, you must fly kites!  The other kids are our neighbors.  Brooklyn let out all the string, all 600 feet of it!  You know, because that's the easy part.  Any guesses on who reeled it back in?

The good, the bad and the ugly.

This was the hardest week of my life.  Not getting answers when you think they'll come after 48 hours was unbearable.  I was so depressed and in the dumps.  So I was so grateful to be able to finally talk about a game plan today!  Mat worked out to have another teacher cover one class so he could meet me at Huntsman for my appointment with my oncologist.  He's the bomb!

The Scoop:
Stage 4 cancer can't be cured with chemo, but it is treatable.  Pathology still hasn't come back on whether it is hormone receptive (estrogen/progesterone positive-she is assuming it is because it was last time), but this time it is also Her-2 positive (making it a little more aggressive cancer).  Last time Her-2 was negative.  That changes treatment a little.

I'll have chemo every week.  Every third week, I'll go to Huntsman for what I am calling "the big kahuna".  Three different chemo drugs, a 5 hour infusion.  The other weeks will be one drug, Taxol, that I'll do in Farmington.  I did Taxol last time for my last four rounds, and compared to the first four rounds I did, it was a cake walk!  The side effects will be similar to last time: nausea, hair loss, fatigue, etc. etc.  After three cycles, we'll do scans to see what the progress is.  My first treatment is a week from today, next Friday.

Dr. Prystas did share with us an "expected" life expectancy for a woman with this kind of cancer.  But guess what?  We're not telling anyone.  Not anyone!  I will only tell you that it's more than a year, but less than 25.  I won't be having anyone making any funeral plans, or giving up on me when they think it's time for me to croak!

On Tuesday, I go in for an echocardiogram, to make sure my heart is strong enough for chemo.  Right after that, I'll go to Radiology to have a port put in.  This is what it looks like
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I had one last time too, and it makes chemo SO MUCH EASIER!  The veins in my right arm don't play nice with needles.  The needles never win!  They use a curved needle to slip into the center of the port.  Easy peasy.

Other than the port, there isn't another plan for surgery.  They just don't remove a bunch of lymph nodes, and can't remove parts of a vital organ like the liver.  So, we pray friends.  We pray that the chemo will do it's job and start to shrink the tumors I have in my body.  And we think happy, positive thoughts.  And we love, love, love everyone around us!  That's what we do.  Enough said for today.

Still no results :(

It's been almost a week, for pete's sake.  Six days since surgery, and I still don't have pathology results.  I called Kathy, my oncologist's nurse (who I love!), this morning and asked her to track them down. Geez!  Hopefully she can yank some chains and get the information we need.  I see my oncologist on Friday morning.

I met with a naturopathic physician yesterday, and was impressed with his knowledge and resources.  I wasn't impressed with the price tag.  Just the recommended vitamin C infusions would cost us $1400 a month, never mind anything else he recommended!  In the research I have done, vitamin C makes a lot of sense to pursue.  I have other stage 4 friends who have done it with great success.  But our money would run out long before this fight is over.  So do I even start, if I can't finish it to the end?  My hunch is some is better than none.  More research needed!

What a day . . .

The day started out blessed!  I've been thinking I wanted to see the alternative medicine doc before I saw my oncologist, just so I could gather information about other treatments before I find out about the ones that will knock me out.  The earliest I could get in was next Monday, but Dr. Prystas is scheduled for Friday.  I stewed about it all weekend, and determined to call the other doctor this morning and see if it could, by chance, be worked out to get in earlier.  I shouldn't be surprised that he had a cancellation so I can see him tomorrow afternoon!  Heavenly Father is watching out for us and knows what we need!

I've sent emails to all of the kids teachers about what's going on, so they could watch for things in them that don't seem right.  Hopefully they'll have a healthy dose of patience and understanding too, if things are forgotten or lost, etc. etc.  Tonight I took Isaac for Parent Teacher Conferences, and many teachers expressed support and concern for me and him.  I was assured that there would be some flexibility, and they're willing to work with him, even the "mean" one!

Michelle called tonight, upset about something at the place she lives.  I talked and tried to calm her about her troubles.  Then she asked if I had results yet.  I know she's worried about it, even though I've tried to downplay it as "not a big deal".  I just don't know if she can handle the truth.  I've prayed for a long time (many months--long before any of this happened!) that I would outlive her, that whatever happens to me, that she can go before me (should I even admit this?!).

I'm meeting with the surgeon tomorrow morning for a follow-up.  I've assumed that I would get pathology results from him.  Tonight I started to panic about how long it might take to get results back.  Did I just imagine that he said pathology would take 48 hours, or was it longer??  I'll die if I have to wait longer than tomorrow.  It was another long, worrisome weekend.  I just need answers.

Tonight as I was getting the girls ready for bed, Brooklyn did something McKinley didn't like, and she fell completely apart.  I asked her if I could rub Serenity (essential oil) on her feet and back.  As I rubbed her back, she just stared at the wall.  I asked her if she was worried about something.  She lifted her head and looked at me, and said "You."  She lost it, I lost it, Brooklyn lost it.  This is a very hard time for us.  It's scary.  It feels unfair.  And I don't like it.

#cancersucks

🙁 

That is all.

Blessings . . . and other stuff!

First of all, I have to say I've been blown away by the love and support coming our way!  We missed our Sacrament meeting because we attended a missionary farewell.  I was in the foyer when the meeting ended (to go to the rest of church) and had half a dozen or more people approach me to give me encouragement and love.  The Ulmer family had been mentioned in the closing prayer, but I hadn't heard it because I wasn't in the meeting.  Feeling the love!

My rock star friend Olivia, set up a fundraising site for us.  I'm SO GRATEFUL for this!  Then again,  I'm so amazed at people's generosity and love so far.  It's really hard for me to accept help, I'd much rather give it!  This is the link if you want to check it out.

https://www.youcaring.com/kimulmer-949703?fb_action_ids=10155748835424810&fb_action_types=youcaringcom%3Ashare

I just can't express how much this will help us!  Every penny will be transferred to a dedicated account that will only be used for medical expenses.

I see a surgeon tomorrow, we'll discuss removing some or all of what's in my neck so they can be biopsied.  Nothing can go forward until we have that information and know what we're dealing with.

Where is my head today?  This is the text I sent to a friend this afternoon.  "Apparently I need someone to get my gas for me.  I just drove off with the (&;$%#@*) thing still pumping.  Good thing they have a contingency plan for that!"  I'm not lying.  Saw the hose in my rear view mirror, it sprung back like a giant rubber band!  I cried most of the way home, but started laughing hysterically as I turned the last few corners.  The gas attendant at obvious retailer said they are designed for incidents like that / people like me.  Only minimal damage to our car.  Wanna help?  Don't let me drive to a gas station.

So Many Questions

I wouldn't wish my situation on ANYONE.  As I left my oncologists office on Friday, the feeling I got from her was, "we'll do the best we can to extend your life as long as possible, but this is NOT good!"  I really love her, and think she's a great doctor.  She and her nurse, Kathy, are so compassionate and wonderful.  But the last 24 hours have brought many thoughts about, "Is that the best I can do?  Just extend my life a little while poisoning my body?"  I mean, isn't that the point anyway?  That my body has a toxic load, and it finally caught up with me?

Last night I was thinking about Michelle.  I met Michelle at the institute at Weber State in 1990.  We've been friends ever since.  She would NOT be happy if she knew I posted this picture!  She has

cerebral palsy, epilepsy, scoliosis, a trach, she's confined to a wheelchair, on top of a host of other problems.  I stick around because she doesn't generally let it get her down (as you can see!).  I told Michelle a few years ago, before a surgery she had, that I was going to take care of her the rest of her life.  She has a couple siblings who only need her when they need money.  That's the only family she has.  She needed someone who would make sure she was OK, make sure she wasn't getting ripped off, to take her to doctors, and help her navigate her challenges.  I've become her advocate and have tried my best to do that.

I haven't told Michelle about my latest predicament.  She will be devastated and heart-broken.  She will give up her will to keep going.  I've asked our mutual friends NOT to say anything to her.  I will tell her when the time is right.  I've wondered if I treated this monster in untraditional ways, that didn't affect my health so much and make me so sick, if I couldn't just deal with my stuff and she wouldn't even have to know.  

Along those same lines, wouldn't it also be better for MY family, not to see me suffer like I did before?  If I could do antioxidant therapy, and other alternative modalities, and be able to function better everyday, wouldn't that be better for them and me?  I don't think chemo is the my only option, but I have A LOT to learn.  And I better learn it fast!

Total Shock

It's been quite the week!  About three weeks ago, I went to my good friend, Diane, to get my monthly massage.  She's AMAZING!  She found a knot in my neck, and she worked it to try to get it to let go.

When I felt a lump in the same spot last week, I had a little panic attack (just a little one!) knowing that I would be seeing my oncologist on Friday.  She was concerned, of course.  She ordered a neck to pelvis CT scan.  Monday, I went in for that.

When I got my results back yesterday afternoon, I was devastated to learn that I have two tumors in my liver in addition to what is in my neck.  One is over 3 centimeters, the other 1.6 centimeters.

All the kids know, except McKinley, we will tell her tonight.  When I came home Monday afternoon, poor Brooklyn was standing at the top of the stairs with wide eyes that said, "Do you know yet?"  When I came home yesterday afternoon, she came into my room, and immediately said, "What stage?" I told her that I would need treatments.  She said, "WHAT STAGE?!"  When I told her stage 4, she burst into tears and cried for the next two hours.  She has in her young mind that it will be a death sentence for me.

I've been depressed and overwhelmed, and shed many tears in the last 24 hours.  But then, a ray of sunshine friend of mine, Ginger called!  She herself has been dealing stage 4 cancer for two years, and she gave me some amazing insights and strategies, which I will be implementing in my life . . . starting TODAY! 

We just happened to be in Switzerland this summer!

Time flies!

I thought about writing on my anniversary.  Thanksgiving day was two years since my diagnosis.  You know how you intend to do things, then suddenly two months have past?  It's the story of my life.

Many great things are happening in our lives.  The kids are growing like weeds and doing well in school.  Maddie is in the 8th grade and continues her piano.  I'm freaking out that in less than a year, I will have a kid with a learners permit!  Isaac is in 5th grade and has taken up percussion (his teacher is in the Orchestra at Temple Square--I'd love to see Isaac there in a few years!).  He continues to amaze us with his vast knowledge of everything under the sun, and reading anything he can get his hands on.  Brooklyn is in 1st grade, an awesome reader, and she loves to play with friends!  McKinley keeps me on my toes, she's two and a half and such a joy!  She wears me out some days, but we love her anyway.  : )

Mat is still at Evergreen Junior High in SLC, and loving it.  Life is busy, they just started rehearsals for the Wizard of Oz, which means long hours.  This is his 15th musical at the school, so we're used to it, and we're grateful when he's around.  I made a tough decision the end of last year to wrap up my business.  Of course, that may change when my phone starts to ring in the spring, it's hard to pass up business.  But I feel like it is time to move on.  My goal for 2012 is to pass the GRE with flying colors.  In 2013, I apply for the Master of Social Work progam through Utah State, which starts up again with a new group in 2014.  By the time I'm 50, I'll be licensed and following my heart as a play therapist.

On the cancer front, all is well!  I've struggled a little bit to get back where I was physically (you know, running marathons and such).  Is it my age and a slowing metabolism?  Is it that I still have a little work to do on the emotional side of things--dealing with everything we've been through?  I don't know.  I did get what I would call bad news this fall.  I had a bone scan done, my OB thought it a good idea, just to get a "baseline".  I have osteopenia, which is the early stages of osteoporosis.  Not exactly what a cancer patient wants to hear, since cancer can easily metasticize to the bones when they aren't hard.  So, I'm taking supplements for the first time in my life to prevent it from getting worse.  That is all I can do.  (Please allow me to vent:  how is it that someone can live a relatively healthy life, exercise regularly, eat pretty much what I should, and NOT get all the nutrients I need and end up with cancer and osteopenia?!)  OK, I'm done.

Please know that we have appreciated so much all the love and support we've received through all of this!  Your efforts have not gone unnoticed, we love you all!

It is nice to know that people think about you.  I went to the gym tonight and ran into some of the regulars who haven't seen me for a while.  When I saw Chuck, he immediately asked how I was and why I haven't been there for a while.  He asked Kevin (who works there) if he had seen me lately, they were worried I was having some trouble.  Nope!  Just really busy and a little too relaxed.  I also ran into the wife of a man I met at Cancer Wellness House.  Ed is the nicest guy, and cancer is ravaging his body.  He's had four or five "primary" tumors (which means that the cancer that pops up isn't related to the other sites, their just new tumors) and so many challenges, but smiles and laughs and gives hugs to everyone. 

I am grateful for my great doctors who err on the side of caution.  A couple of months ago, I had a head-to-toe bone scan.  I tweeked my back somehow, it had been aching for about three weeks when I finally couldn't stand it anymore and called my oncologist.  Breast cancer, when it spreads,  often goes to the bones, and I was nervous.  I said something like, "I don't want to be a drama queen, but I've had a dull ache in my back for about three weeks, and I'm wondering what we can do about it."  The scan came back totally clear.  Hooray!

All in all, we are doing well.  Having four kids from teenager to toddler keeps us busy.  A lot has happened since McKinley was born, but we are sure grateful for her!  When I find my camera, I will post some updated pictures on here.  Love to you all!