Friday, April 27, 2012

The Good and the Not So Good

The good news?  I didn’t have to have any chemo this morning!  The even better news??  I’m going to be feeling great for this next week’s trip to Utah!!  And the BEST news???? My kids get to come with me!!!  We are on the plane as I write!

Though today has been a little hectic (it’s 10pm and I still have 6 hours to go before I can get to bed) everything has come together surprisingly well!  Initially I was planning on flying out alone for Saturday’s big Hoorah- the really amazing, blow-me-away event my USU Ambassador friends are putting on for me and my family, “Colors for Tessa.”  My super awesome friends were able to get a plane ticket from Jet Blue donated!  After enjoying all the fun this Saturday I was going to relax at my parent’s home for a week while I recuperated from chemo effects.  Then, when I found out I wasn’t even going to get chemo today to need recuperating, my dear friend Natalie went into overdrive and arranged two more donated tickets for my kids!  Isn’t that amazing?!?  Thank you Nat and thank you Jet Blue!!  I’m seriously overwhelmed with the goodness of people and so grateful for everyone’s generosity! 

It was a little crazy getting those last two tickets all arranged…  I was packed and ready to leave the house by 4:00, BUT was still on the phone getting details and unsure of whether my kids could even come!  So, Adam threw some kid’s clothes in a small piece of luggage and we jumped in the car at 4:20 while I was on the phone with Jet Blue.  20 minutes later we had the tickets set and the three of us were heading to Utah!  Adam and I decided to wait to tell Mykee and Evan they were coming with me until we got out at the airport and could film them being sad and saying goodbye to me. Then we would give in and film their excitement – we thought it would be fun!  Unfortunately traffic was a beast and a drive that would only take 1 hour with no delays took 3 ½ hours!  So we weren’t going to have time to film at the airport and the kids were starting to throw fits from being cooped up for so long in the car.  So we sprang the good news on them while we were driving!  Mykelle and Evan have been ecstatic knowing they get to see ALL of their grandparents and ALL of their cousins over the next week!  And even their newest cousin, Baby Mason, who was born last week on Mykelle’s birthday!! 

The timing of this trip really couldn’t be better!  I’ve been looking forward to this week for the past month and can’t wait to see everyone.  It’s really going to be so awesome and the only thing that would make it better would be if Adam could be with us too L  The kids were sad to say goodbye at the airport and blew him lots of kisses but were still too excited at the prospect of going to Utah to throw a fit (thankfully!).  Adam would have LOVED to come and wishes he could enjoy Saturday and see everyone but he really needs to be at work- especially since it’s finals week where he works!  We’ll miss him a ton and I’m sure he’ll miss us, but I bet he loves getting his work done while we’re not there to distract him J

Even though I’m super excited about heading to Utah and I don’t want to dwell on the not-so-good news I figure I should cover those details anyway.  So here it is:  You remember that miracle drug Adcetris (Brentuximab Vedotin or SGN 35) that I went on and on about?  Well, as you probably guessed, it’s not a miracle for me!  I’m in that small percentage- 25% of people for whom the drug doesn’t work.  Dang.  It’s not a huge surprise, but it’s disappointing all the same.   From the scan results it looks like Adcetris kept most of the tumors from growing but they didn’t shrink much and in one area the tumor actually grew a little.

Fortunately there are other options.   And as Doc Mato put it, we were hopeful the “easy” drug would work, but I can still go the more difficult route.  Which is called, Hyper CVAD A.  I will be heading into the hospital on Sunday the 6th of May for inpatient chemo over 5 days.  I hate inpatient chemo.  I am going to try to figure out a way to take my Play Station 3 into the hospital so I don’t get too bored!  

The new chemo has all the traditional chemo side effects, including losing my hair!  I will go through two cycles, three weeks apart, followed by another PET/CT scan to see if it’s working.  It’s supposedly very similar to ICE which I had during Cancer Fight #2.  If I’m in remission after two cycles I’ll proceed to transplant, if not in remission but the chemo is working I’ll do another cycle or two in the hope of achieving full remission.  If it’s NOT working then we’ll try a different option, of which there are supposedly 5 or so more to try, if need be.  Doc Mato was of course very optimistic and because the tumors have generally responded well to stronger chemo he thinks this one will work.  If things work out I will be going through the transplant in 3 months.  Wow, a lot of “if’s” in this paragraph huh?  I wish I could give Zack a more definite time frame for the transplant so he could plan his life a little better!  Sorry Zack! 

5 comments:

  1. I wish that I could be there for the concert. We live in AZ and my husband is right in the middle of dental school, so a trip to UT was not possible for us right now. I hope you have a fantastic time. Please tell all the other Ambassadors hello for me. I love you girl. Have a fun reunion!!!

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  3. Tessa, today was a blast! It was joyous seeing you and your darling little ones. Missed Adam, though. We love you tons. I am sorry Adcetris didn't work for you; but Hyper CVAD A will be the bomb!!

    PS Your brother Zack is a rock star--no that's not right. He's an awesome, loving, dear brother!! Much better than a rock star. (No offense to the RSs out there!)

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  4. That's terrific that you get to visit with family and include your children! Also, what Jet Blue has done for you was amazing!!! Does your friend work there or is she just really persuasive? I wish your hubby could go with you though. (((hugs)))

    Have fun with your family!!!!

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  5. You are an amazing girl who has had to put up with a LOT! I am happy you get to go to Utah with your kids, and it is wonderful the thing your friend was able to do to help!! You will be in my prayers through all of this and so will your family! Keep on smiling! You have one of the most beautiful smiles ever!! Your family is so lucky to have you!!! You help me smile more!! Thank you!

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