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Treatment Ends!

“What part soever you take upon you, play that as well as you can and make the best of it.”  ― Thomas More

Dave and I are still basking in our recent check up in Arkansas, meeting with our doctor last Thursday. In a nut shell, Dave’s treatment has successfully ended. His scans, tests, labs, etc., are all good. Better than good in some cases and could be better in others, but not bad.

So indulge me as I bring you up to speed. Dave’s three year maintenance is up early December 2012. He missed his six month check up in May due to yet another doctor leaving the Myeloma Institute. That was our 3rd. Between Dave’s busy work schedule and MIRT’s declining admin personnel, Dave didn’t reschedule his “six month check up” until the end of October! The real push was our local oncology group telling him his prescriptions were run out from Arkansas and me jumping up and down like a three year old having a tantrum until I was exhausted and exasperated. Sometimes it really stinks to be a caregiver of a non-compliant adult! Anyway…

So the issues were this… It had come to my attention about 18 months – two years ago, that Arkansas was subscribing to the idea to continue patients on some sort of maintenance therapy beyond the three years. I was disheartened by it and knew that Dave would be as well. I held off telling him for about a year. When I finally did he was confused by it. They were moving the finish line that he had his eye on. There are two points of view I think you can take on this: 1) it is a disease where the treatment protocols are changing and very fluid, and 2) this totally sucks and it’s not what they said! For me it was a feeling of both and so I presented Dave with the data that I had as unbiased as I could and indicated that it was his decision and his alone to make. He could decide to continue (if that’s what UAMS wanted) or decide he was done. But he had to “own” his decision and that I would support whatever he decided. On top of that we had a new doctor we didn’t have a relationship with. There has been the growing agreement amongst physicians even in Arkansas that long term use of Revlimid in a patient like Dave has an increased risk of secondary cancers, without knowing for certain the benefits of long term use in a maintenance, post SCT setting. Not having been in Arkansas for 10 months I wasn’t sure what UAMS was subscribing to in maintenance therapy anymore. Dave decided he was predisposed to ending his maintenance therapy as originally planned. My hope was that the doctor would hear him on this and give his blessing, knowing that Dave would be much more confident in his decision if he had that.

We were both hopeful and stressed about it. Managing that stress was important to both of us and we did a pretty good job keeping our eye on our goal. We had little doubt that Dave’s tests would all be good. Isn’t that kind of funny? So we completed the three days of tests and while doing that we had several Myeloma Meet-Ups that were fabulous. We had dinner with Angie and Mike who I had met while speaking at a MIRT meeting about our journey with Myeloma and we have maintained an online relationship ever since. Mike is high risk and been in relapsed treatment since February. He and Dave share a mutual love of baseball and coaching their children and had a great time talking about the tournaments and leagues they had been involved in. Additionally we discovered that Angie, Dave and Mike were all in the telecomm business, so that launched into another wonderful conversation. I met up with a couple from Delaware that are on the FB support group and indicated they were in Arkansas. I met them in the infusion waiting area while Dave was getting one of his scans and we had a great time getting to know each other and talking about all those things we talk about in Myelomaville. I’m hopeful for them. And then finally another couple from our northern border who I have been friends with online. It was a meeting that was a long time coming and over the top exciting for me. She was neutropenic so we agreed to meet at their place and her wonderful hubby/caregiver cooked us an amazing lunch. These opportunities to meet others sharing in this journey somehow always inspires me. You would think the last thing you would want to be doing is hanging out with a bunch of other cancer patients in treatment and quite the contrary is true for me. Dave has come to enjoy it as well. He even turns off his phone and is 100% engaged.

Off to the appointment on Thursday afternoon to face the music. As expected our tests were stellar. The doctor was called in and briefed by his trusty side kick. I’m armed with our notes to have “the discussion” and he says, “how long have you been on maintenance?” as he’s managing the thick medical record file to find it himself. He looks up at Dave and says, “I think you’re done. We are the most aggressive in treatment and keep patients on maintenance the longest. You can’t say you’ve been under treated.” Dave gets a conservative smile, a little teary and says, “I would like that, very much.” (We both experienced a huge EXHALE!) With that the doctor smiles and I say, “Dave do you have the champagne in your backpack? I think we need to pop that baby and celebrate!” We all chuckle and then launch into a discussion about Arkansas, my blog, trends in treatment, etc. Then we get into some logistics. Dave’s port, monthly mail-in labs to continue, our check up schedule being six months, then 9 months, then at one year intervals. Dave’s immune system hovering at 200, with 1200 being normal. Requiring he stay on the antibiotic and re-immunization discussions once he gets around 400 or higher. Needless to say, we were feeling pretty GIDDY as we left the clinic and had the good fortune of running into our northern border couple we had had lunch with that afternoon and they were just as excited as we were to hear our great news! A few important phone calls and group texts were sent out.

Dave and I went out to dinner and had margaritas to celebrate (we really didn’t have any champagne but probably should have!). I toasted Dave on what a STELLAR job he had done through these last four plus years and how proud I am of him. He toasted me that he couldn’t have done it without me and thanked me for being there for him every step of the way. Sniff, sniff. We didn’t sleep all night and we had to get up at 2:45 am to catch our early morning flights out of Arkansas. Dave headed home to California and I headed up to Baltimore, Maryland to spend the weekend with our daughter (more on that in another post).

 

 

Kinda says it all uh?

When I returned from the east coast we had our follow up appt with the local group here in California (yesterday). Word quickly spread around the office and infusion center that Dave WAS DONE! One of the infusion nurses ran us down at the elevator as we were leaving and we stepped out to get hugs and congratulations. She was over the top excited for Dave. The Valet was gobsmacked and walked us over to the car going on and on with how excited he was for Dave. We were GIDDY all over again to have everyone just as excited as we were.

Dave continues to work out with Lou and now may feel comfortable going to three days a week. We will continue to work on the things that supported him during these difficult years, nutrition, exercise, mental and spiritual. We will take a more proactive role in getting his immune system restored sooner. Dave has decided to leave his port in for now and so it goes.  

 

17 Responses to “Treatment Ends!”

  1. Doug says:

    Congrats! It’s a great feeling to be off the meds. When you mentioned the news causing Dave to be teary hit home….I reacted exactly the same way. I’m very happy for you both. Have fun!

  2. Hugh says:

    Wow, wonderful news for you both! You have to celebrate a life milestone like this one!

    Hugh

  3. Lori Puente Lori Puente says:

    I think we’ll celebrate for the rest of our time here on earth! :) Yes?

  4. Shelley says:

    I can so understand your excitement, Lori! Daryl has been off treatment for 6 weeks, not due to good blood results but because he was becoming so sick from the treatments. And even though he still was not feeling as good as we had hoped being off of treatments, at least his colour is returning and he is more relaxed. It has been a really nice break for both of us.

    On Tuesday we find out what the plan is going forward. I believe his doctor wants to start him on Revlimid. :-)

  5. Lori Puente Lori Puente says:

    Yes Shelley, those “breaks” were always enjoyed by us for our checkups when Dave was off everything days leading up to the tests. I don’t know if it has still sunk in yet that it isn’t just a break.

  6. Brenda says:

    Lori, So glad to read your post. I’ve missed reading your blog. When a lot of time passes b/t posts, I hope it’s because you and Dave are out enjoying life. So glad to hear this great news! My husband had an ASCT ON 1/4/09 so the 3 year anniversary is coming up. He remains on maintenance therapy (Thalomid). There has been no talk of stopping that. I realize all treatment protocols are not the same, treatment plans are evolving and if it ain’t broke… He remains in CR and check ups every 4months. So take the good news and go with it! Again, so glad to hear the good news!
    Brenda

  7. Lori Puente Lori Puente says:

    Thanks Brenda! I have taken an unplanned, but probably needed, hiatus from my usual online activities. And yes, it is doing fun things. Glad you hear your hubby is continuing to do well.

  8. as always lori, you’ve done a fantastic job in providing an honest picture of what both MM patients and their caregivers go through with issues like the ones with maintenance. the emotional, medical, and personal highs and lows we all struggle with are daunting. but how fortunate we all are, your readers, to have the accounts of dave’s and your journey, written so well with candor, sensitivity and a dose of good humor (i love the picture in my mind of your hissy-fit, jumping up and down like a 3 yr, old!) – been there, done that! big warm hugs to you and dave – keep celebrating the hell out of LIFE!!!

  9. HannaO says:

    Hi Lori and Dave.

    I am still so excited about your news, and just reading about it makes me feel as if I’m right there screaming “yay!! congratulations”.

    I am so happy that you have been one of my many guiding lights through this journey, and hope that you will continue to do this even though Dave is probably cured now.

    I love the idea of the internal port and am going to see about getting one for myself. Already e-mailed our APN to inquire. I have the sexy one right now – you know, the one that hangs out of my chest? I’ll miss that one (sigh). Not :-) Do you think it’s easier to insert the internal one while this external one is in place? My other option is to remove it if no treatments are pending next week, and have the internal one put in when we begin again.

    Hugs to Dave for me, and of course, an extra hug for you. Thanks again for all your guidance and support.

    h

  10. Lori Puente Lori Puente says:

    Thanks Hanna!

    We only had the dual lumen port so don’t know the answer to your question. I would imagine they would put one in and then take the other one out in one fell swoop! Make sure they access it when they install it. You’re skin will be irritated and it won’t want to be poked. :)

  11. Danny Parker says:

    Very happy for both of you! Thanks for continuing to give back to the community.

  12. Joel says:

    Congratulations and I pray for continued blessings with your fight.

    My mother just lost her battle with this disease.
    YouTube Tribute: http://youtu.be/zhTswTygMfw

  13. Lori Puente Lori Puente says:

    Joel, What a lovely tribute to your mom. Thank you for sharing.

  14. DEAR LORI,

    I AM EXCITED AND THRILLED FOR YOU!!! OVER ONE MILLION VISITS TO YOUR AMAZING, INCREDIBLE, FABULOUS RIDING THE WAVE MYELOMA BLOG!!!!!!!!!!!!!!!!!!!! WHOO – HOOO!!!!!

    CONGRATULATIONS, LORI, AND THANK YOU SO MUCH FOR ALL YOU DO – AS A CG WHO FOUGHT FOR THE VERY BEST FOR YOUR DAVE, WHO SHARED ALL THE TRIALS AND TRIBULATION AND TRIUMPHS WITH YOUR INIMITABLE GIFT OF WRITING, AND EMERGED AS THE EPITOME OF A MYELOMA ADVOCATE FOR THOUSANDS AND THOUSANDS OF PEOPLE.

    SENDING YOU AND DAVE LOVE AND DEEPEST GRATITUDE,

    KAREN AND HUGH SUTHERLAND

  15. Lori Puente Lori Puente says:

    Thanks Karen & Hugh!

  16. Stephanie Couldrey says:

    Lori and family,
    We, the Couldreys, are extremely happy about the news. We wish you all well in your continuous recovery. Thank you for your blog and for giving many others the hope that they search for everyday.
    Merry Christmas and a Happy New Year!
    love,
    Steph (Couldrey) Sidarous* — married now! ;)

  17. Lori Puente Lori Puente says:

    Thank you Stephanie! Hello to all and CONGRATULATIONS on your nuptials! So happy for you.

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