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! 

Tuesday, April 10, 2012

Cancer Does Suck, BUT...

... But, the loving support sent my way has been AMAZING!  Adam and I are continually astounded at the love and generosity of our neighbor (whether here in NJ or across the country).  We have received so much support from so many people... it's helped keep our hearts full and our minds positive when it would be so easy to wallow in negativity.  

My friend Adelee sent me these hats and the blanket made by her company A&C Embroidery.
The hats say "Cancer Sucks" on them!  Aren't they great??  It was awesome to receive this package from her and to know she'd spent time making these things for us.  Evan just HAD to sleep with the "Family Love Blanket" that night! 
I am grateful to all of you out there who've read this blog and offered up a prayer or even a positive thought.  I'm thankful for all the letters, emails, and messages of encouragement and love we've received.  I'm overwhelmed by the steady influx of offers for babysitting, meals, house cleaning, massages, ladies nights, and the list goes on!  The assistance and reinforcement we receive on a daily basis helps our family more than can be imagined!  I'm continually astounded by the goodness being shown to us and am looking forward to someday being able to pay it forward to others.  

 A basket of Easter/Get Well goodies from my friend Chelley and her ENTIRE family...  And by "entire" I mean everyone!  I received some of the sweetest drawings and letters from some of her nieces and nephews and/or cousins... I couldn't keep track of how everyone was related :)  It even had stuff for Mykelle and Evan it!  So thoughtful!
To everyone who is helping us through this journey, the words seem insufficient but I offer them anyway,  THANK YOU!

Adcetris Chemo Treatment #3!

Number three is DOWN!  I'm starting to feel better but there's some lingering nausea and headache still.  I even tried to take it super easy this weekend just to see if it would make a difference in the speed of recovery since last treatment I was doing a ton with visitors.  It didn't.  So now I know, it doesn't matter whether I rest or not!  Hear that MOM??  Don't get mad at me when I'm not laying in bed watching TV and eating bon-bons!! :)  

I do have a new side effect to add to the list- peripheral neuropathy!  Tingling of the hands and feet.  It's not very strong and really kicked in the day after treatment but it's weird.  It's like my hands and feet are both half asleep so they're tingly, but not all the way pins and needles.  I hear it can get really bad but fortunately haven't experienced it too much.

The cancer center visit itself went really well.  I was able to drop the kids off a little early to their preschool at Danae's house and go with Adam.  We were in to see the doctor in good time and sent off to the infusion room for chemo where I had one of my favorite nurses helping me.  I had some good friends stop by to chat while I was getting the infusion, Pat and Dennis.  Dennis received a transplant the same time I did in February of last year.  It's been nice to keep in touch with him and his wife over the last year to talk through our different rough spots with each other, since we each knew what the other had been through.  We had a great time talking with them before they had  to leave for their own appointment.  

I was finished before I knew it and on our way to Arby's for the traditional lunch!  But we forgot to take pictures for my blog entry before leaving the center so Adam snapped a couple of the joy of LEAVING after chemo...

Jumping for JOY?  Adam made me do it...
Can you see me back there??  Adam wanted to illustrate just how hypocritical I can be...   I parked forever away
from the entrance even though there were spots available closer... Something I've been known to tease him about
from time to time!
I heard a lot more from the bone marrow transplant trial I'm getting into.  Zack and I have to sign our lives away on a million papers to do it but it will all be worth it in the end!  I now have a better idea of what will be the order of events and what the events will entail, but of course have no idea of the WHEN.  I hate that part!!  How can I plan sitters for the kids when I don't have a time frame?  I may even have to do up to THREE inpatient 5 day chemo treatments (called EPOCH) to bring my immune system down before the transplant but I was told I wouldn't know until 48 hours before going in.  Each time I go in for that would push back the transplant by 3 weeks.   And this is all assuming I'll be in remission soon from the chemo I'm getting now!   SOOO, I basically have no time frame whatsoever.   That's not true... I'd say I will be getting a transplant sometime this year, hopefully during the summer!  

I was excited to get the OK from the doc to travel to Utah for the cool fundraiser happening on the 28th that my awesome USU Ambassador friends are putting together.  I am so looking forward to seeing friends and family and to (hopefully) stay a week in UT!