I haven't been able to get this off my mind all week - yesterday was one year ago that we started this brain tumor pathway. One year ago yesterday, Tara and I stood in EVDI, shaking and crying together as we learned of the tumor. Trying so hard to be brave as I heard the news from Dr. Shockey, but giving up, and hugging Tara and just crying with her. We were both so scared.
I have lived through things I never thought I could live through.... things like the pathology report, the initial CT scan, shaving Tara's head, and family members breaking down at different times (including myself!)
I have learned I can't write the script on life, I have to live by Tara's motto "come what may and love it." (although she does a better job of that than I do)
I have learned it's really okay to cry, it's okay to lean on others and let them help. Some days I had to get through hour by hour...
I have witnessed Tara's amazing courage and positive attitude as she faces this. Rarely do I see her break down.
I have memories of the fairy tale wedding reception (thanks to friends & ward family) and memories of Tara being in white in the temple, special moments the 2 of us had together before the wedding itself. The wedding got Tara through some very tough times..... it was a huge wonderful event to look forward to!
I have loved watching Tara & Josh be so happy and in love.
I have loved spending time with Tara - even though I would prefer not to have Tara have a brain tumor; I enjoy all the moments we have in the car driving back and forth to Barrows. We've had some pretty good talks about so many different things. Tara has become a friend, not just a daughter. It's been a wonderful transformation. Sometimes we run around together acting just like 2 married women doing our errands together. We've had plenty of times together when Tara doesn't feel good; but we've also had many times that are happy, also -
I have loved all the people who have helped us through this trial. So very many people who have prayed and prayed and loved us through this. I've said this before, but you have carried us on your shoulders.I feel the Lord's love through people.I also feel it in the temple, which has become one of my lifelines.
I remember Scott endlessly taking on the job of Tara and her care the first month - getting us into the right hands - making all those calls I don't know if I could have made - Scott & I took turns crying and breaking down - but we rarely both broke down at the same time, so we could help each other through our tough moments.
I remember family rallying around - family near and far - so many thoughtful cards and gifts, letters and emails from family and friends both....
I have learned to treasure the moments. I really do treasure the moments. I have learned that it is possible to survive seemingly unsurvivable moments. There are some moments I don't treasure; but I try to reflect on the pleasant moments. I have grown from the hard moments. Would I choose to grow this way? Definitely NOT. I think what gets me through each day is HOPE. Hope that tomorrow will be better, right now it's hope that Tara's side effects won't be permanent and she will be better at some point. My hope turns to prayer...I do keep trying whatever I can to help her (when she'll let me help her, that is). We have a plaque in our front hall that says, "where hope grows, miracles blossom." That came from someone last year at about this time...
I think of people who don't even know Tara doing incredibly nice things for her, a homemade afghan, quilt, pretty earrings in the mail, just to name a few. I can't even begin to mention the kind acts done in Tara's behalf from all the people who DO know her! She was completely and totally spoiled at her wedding and bridal shower. Such generousity I have not witnessed before! Generousity in gifts, not only presents, but gifts of time also. Gifts of prayer - I really do feel the power of combined prayers. Prayers help me remember that Tara is NOT a statistic - she is Tara - and miracles can and will happen - and have happened!
In 2011, Tara should finish treatment - we'll find out this week when Tara starts again. Finishing treatment means Tara can start feeling better again. I have my perpetual hope that her feet will stop burning, her stomach will stop hurting, and she won't have permanent side effects from these medicines being poured into her body. She has started to get some of her energy back these 2 months she's been off of chemo. I can see that someday when she's finished; she could return to a "normal" life again.... except I don't think we'll ever return to the normal we were before the brain tumor.
Now for the newsy update...
Tara is officially "off" the clinical trial. She didn't have an infusion within 8 weeks, so they can't monitor her anymore. I'm okay with it, but Tara & Scott are struggling. I have that "hope" I referred to before that keeps springing up. Maybe I have some "blind faith" but I believe if Tara HAD to have that drug, she would get it. If her tumor recurs (we all pray that never happens) she'll still get the medicine for free at that point - so the clinical trial was not in vain - and it may have helped these past months as well.
We see Dr. Shapiro Tuesday, as well as Dr. Smith. Stitches will finally be removed, and then one more week of antibiotics then Tara can get OFF OF THEM. 3 + months is too long to be on those heavy duty drugs in my humble opinion (or not so humble). The doctors will decide when chemo starts again. Tara says she's ready to start again; but I'm not so sure - her stomach bugs her so much and I hate to have another thing bugging her stomach. Tara really wants the chemo - she wants something in her body fighting the tumor. I think it's like a security blanket with her. I want it only because the sooner we have it, the sooner Tara finishes treatment. My guess is treatment will now finish in November. This surgeon that we weren't supposed to get to know - he was just "assigned" to the case, we are getting to know pretty well.... he is actually very wonderful and really wants to take good care of Tara. I am trying to do whatever homeopathic things Tara will let me try to combat the toxins in her body.... Tara did say yesterday that "she's ready to be a brain cancer patient again" It's been a year and she's ready to eat healthy and fight the fight some more. Tara will never be "normal" - no matter what happens, she's heads and tails above "normal". She is our hero and Josh's queen!