Sunday, March 29, 2015

Couldn't even procrastinate when I tried! (Living in ignorant bliss - ummm must not be for me.)

So just 4 days after postponing my MRI I started with headaches- yes "those" type of headaches... I knew what they were, my oncologist knew what they were and the brain MRI confirmed it- the lesions were there...Some a little bigger… some new… some gone. So I saw the radiation oncologist and Neuro oncologist and have a new tx plan.

I'm getting full brain radiation again .. start tomorrow for 10 treatments... Then intrathecal Hercepton (direct to the brain chemo), First delivered via spinal tap then a catheter to to brain (once my brain "settles") which I'll get every week... I actually feel great and glad it was caught early enough... Dr Fellin prescribed decadron (steroid) right away and that has helped with the swelling so thankfully no headaches! (Just eating).

I've always just wanted the intrathecal hercepton as I think that is the only tx that has a chance of working longer term with minimal side effects. This is the last time I can get whole brain radiation so moving onto brain herceptin makes sense! I'll still also need the IV version for my body, but maybe if the intrathecal Herceptin works, I'll stop the PO chemo drugs.....

So I'm still swimming, hold faith tight, am grateful for your love, support and prayers. I do have Faith that everything is going to turn out the way its supposed to be. I know you want to ask what do I need .., and it means a lot... But we are good right now... The one thing that you can do or be ready for is be a listener - whether your daughter or son is a good friend of the kids, or your a good friend of Jason or my parents or family... Be available, willing, and encouraging to let them talk... And show them how much you love them.

I have to admit that I love your blog comments more then I thought I would... It gives me comfort and makes me smile... The issue is how hard it is to post ... I think you need to sign up for a gmail account to post- maybe someone who has figured it out can post directions !

Here is a favorite passage from a book that has helped me to cope...called To Heaven and Back.. By Mary C Neal, If you are suffering loss, or ever had, I highly recommend this intelligent look at Faith.

So make your "string" contributions wonderful and be kind to each other!

Friday, March 13, 2015

The power of procrastination…

So a new thing for me is procrastination... was never really a procrastinator, always felt if something had to get checked off my ever popular "to do" list then “git er done”. My schoolwork was always early, my work work was done as soon as it was assigned, I finished my doctorate in 3 ½ years (which believe me is a feat in and of itself), the kid’s bags are packed the night before school but I find myself in a new world now that I have terminal cancer. Nothing seems so important to rush to "git er done". I have a new freedom now, like a weight has been lifted. I do not see the urgency so much, and I look at its importance and am more discerning what I get upset about (or get involved in). My therapist and I talk about death all the time, she is the only one I can talk freely with about this. Here is news to maybe some of you- we are all going to die. It's a fact, an inevitability. What I face you all will face sometime in your life (hopefully much much later though!). Once you come to terms with it, accept it for what it is, it opens up a kind of freedom that I never had before. I used to worry about EVERYTHING, now,  not so much. Nothing is as big as death. And in the big scheme of things most is insignificant. It’s how we treat each other, the gratitude that we hold in our heart that matters most.

So back to procrastinating, per my Oncologist suggestion, we are pushing back my MRI brain scan to May (I was to have it Monday). The rational is that since I have no obvious side effects (namely headaches) then lets “just keep swimming”. I like this no scan unless we have to approach. Scans are scary, they show the lesions, where they are, how many, how big and it freaks me out regardless how I’m feeling and doing. So since I’m feeling good, I’ll just enjoy a few more weeks in ignorant bliss.

Regarding my treatment plan, I’m still tolerating the PO chemo meds, receive IV herceptin and zometa every 3 weeks and just had an echocardiogram that was fine (it's to make sure the Herceptin has not done damage to my heart as it can cause heart failure, we check every 4 months).

We returned from Southwest Florida last week and I can’t get seem to get warm (despite the climbing temperatures)! We had an incredible time, especially the gorgeous beaches, awesome 80 degree weather and spending time with family.

Here is a pic (can't tell but that is Abbie and Tommy playing in the water):
“It all begins and ends in your mine, what you give power to has power over you.”