Scan results

I spent almost two hours in my oncologists office, which I don't even think I did at diagnosis. We went over all the details of the last scan and compared them to the previous scans pictures. I never felt like I was rushed or that she did not have time for my questions.  I was in the room alone with Doctor Haley for close to an hour before we called in my family.  I must have asked three times if she wanted me to get them, and she just kept saying that she would go over all of it with them again, she just wanted to go over it with me first.  I felt this great connection between patient and physician... that she wanted me to understand what she was feeling.

All to say that the scans are particularly worse. I was actually quite surprised. I am having some increased pain, which usually clues me in, but I was just quite optimistic that I would be able to stay on the not so toxic Ixempra. I was REALLY praying that was the drug for me.  I am thankful that God knows the plan way before me.  I am also thankful for the past three months of relative side effect and pain free days.  

The new "plan" is to see an orthopedic surgeon right away as the progression to my hip makes them think the risk that I could fall/break this bone is significantly greater as the bone is eaten away in several places. She thinks a solution might be a pin put in my hip to make it more secure.  Again, having something to do is hopeful.  I have actually wanted to see an orthopedic doctor for a while as my mets are only in bone.  I thought this type of specialist might have a unique perspective.  Please pray I connect with the right doctor.  I will first get a referral for a doctor at my same hospital.  But if they cannot get me in soon, I will go outside UT Southwestern to get going as soon as possible.

Step two is to transfer to another hospital, a research hospital in the area, Mary Crowley Medical Research Center. It is a center devoted to clinical trials.

My oncologist thinks there is still treatments she can do, with various chemo treatments, but she also feels like we are in a crossroads, where a new avenue could really bring better results. She said at the Crowley center, I can get, hopefully some targeted therapy that would not be available through her for a while. I just need a good treatment now, as I have had 3 poor scans in a row.  

Pain now is manageable.  Dr. Haley wants me to use my cane for extra support even if I feel like I can walk without it (in that case I am trading to a nice hot pink number!).  I am also having good success taking Alieve.  I have the ability to double my pain patch, which is a good back up.  Fortunately, I have not needed it the last few days as the other has worked fine.  

I am pretty weary emotionally right now. But, I know my faith is not worth much if I am not trusting in Him in the bad news as well as the good. I am trusting in Him, who knew about these stupid results long before I did.  I am coveting your prayers right about now!

I remember I owe you pictures.  I have had a busy day and I knew this was important to get out to you.

Take care,
Jess

Better

Thank you all for your prayers.  I am feeling better today.  It has not been a steady climb to better, but more a roller coaster. I can definitely tie it to a lot of activity and on my feet.  However, today I was able to connect with my oncologist and get some advise for pain management.  She said I could both take Alieve for the muscle pain and double my pain patch if needed.  She told me my pain did not sound metastatic in nature, which thrilled me.  I will get complete results from my PET/CT scan on Friday afternoon.  I will then hopefully get round 5 of Ixempra.  Saturday afternoon, I was able to go to the beach...yea!  I LOVED my beach-time, and it was one of the highlights of my trip.  I will try to post pictures and recap the Florida conference tomorrow, as I am pretty tired tonight.  I just wanted to give you a quick update as I have left you hanging (and praying) since Saturday.  A friend said to me that I never complain about much pain, so I must be feeling horrible!  I am not horrible, just experiencing more pain than usual.  And on some of those roller coaster days like Saturday and again Sunday night back home, I did feel pretty horrible (okay, I admit it already!!) Today was a better day and as per my mantra, I am thanking God for this moment.  Thankfully, even on hard days, I was able to thank God for you and your prayers and comments to me over the last few days; they were such an encouragement.  

Love,

Jess

Prayer today please

A super quick post today.  I am in Florida for the conference for young survivors.  I had a blast yesterday with a great first session and a fun dinner with new friends.  However, today, I feel the worst physically that I have felt in a long time.  I do a lot of walking here, so maybe I am just sore. I ache all over.  I have my cane, and pain patches, and I want to go to everything offered here this weekend.  This afternoon at the lunch break, I am supposed to go to the beach with a few women.I absolutely LOVE the beach, even when the water's cold, I just want to sit on the sand for a few minutes and take in the ocean air.  Please pray that my physical strength will hold up.  You are the biggest network of people I know, so I hope you are reading today or tomorrow!! 

Thanks so much:)

Jess

Happy Valentines Day

Katelyn went to a school Valentine dance at her junior high.  I love when she curls her hair (these days, she wakes up early to make it straight as a board).  I also love low key dances, without dates, and wearing casual clothes--jeans.  She had a fun time and spent the night with a few friends.  I heard they stayed up until 4 AM!  


Jake took Jadyn and Bryn to his school Valentine dance this past weekend.  They went out to dinner,just the three of them, before the dance.  The girls felt beautiful in their red dresses.  Jake said their favorite part of the dance was eating many cookies, and getting their pictures taken! 

One of the other teachers brought her son, Cody, to the dance.  Cody and Jadyn happen to be in the same kindergarten class too!  They are great friends and look so cute pictured here!

Below is Jadyn and Bryn in their Valentine outfits heading off to school.  I am thankful I can still dress them in matching outfits. I wonder how long that will last.



Bryn's Valentine party at her preschool!



She loves me to be there. I have to tell her to go play at her party, because she spends a lot of the time coming back to me to give me hugs and kisses. In two weeks, she will have another program at her school, this time with a Patriotic theme. I have her sing the songs for practice, and the only one she can remember is America the Beautiful. She is so sweet when she sings it. Then, I ask her to sing another song in the show. She never remembers any more! So, I say, you better remember more songs for the show. She said, "Mom, as soon as Mrs. Hanson starts singing, I remember the song, just like that!" and then she snaps her fingers. I thought, that happens to me too. Good thing we have "Mrs. Hanson's" in our life to help us remember important things. I, for the last TWO years, have been involved in a program called, MOPS (Mothers of Preschoolers). They have never changed start times, not once. And, yet, each month, I struggle to remember if it starts at 9:00 or 9:30. Almost always, this involves calling a friend for confirmation. As I write this, I am still not 100% certain of the correct time.  

I had a treatment a week ago Friday.  I happen to get sick around the same time.  Just a cough/sinus infection I guess.  My counts were fine to have chemo, but my doc gave me a z-pack just in case.  I am glad I had it, because I felt horrible over the weekend/early week.  I am glad I feel better, as it is no fun feeling wiped out exhausted when you just wake up!  Otherwise, chemo went fine.  I have a PET scan Monday the 25th to see if it is working!! I pray, pray, pray that it is.

We have a short week with Presidents Day tomorrow and then Friday I am off to Florida for two days by myself!! I guess by myself is used incorrectly, as I will be with thousands of other women at the 8th annual Young Survivors Conference for women diagnosed with cancer under 40.  I received a scholarship to be able to go that will cover everything but my food!  See www.youngsurvival.org for details about this great organization.  I have spent several hours of my life on the bulletin boards of this site.  It has been so helpful to just read about other young woman and the unique struggles we have dealing with the daily roller coaster that continues, cancer or not!   There is a special section on the boards for young, metastatic cancer survivors.  Even more of a connection with these ladies...

Love to you all,

Jess