If I were a better granddaughter, I would be at Good Friday services, but alas I am at work on my lunch break. I think about my Grandma – my Dad’s mom – today. I wonder what she would think about how things are for her family if she were here today… Two of her sons have some pretty big health challenges right now. As a Mom myself now, I know how painful and scary it is to have you babies hurt, in pain, sick – and yet you put it aside so you can take care of them.
My Dad is doing okay right now… I think he could be doing better. *Warning: I’m about to stand on a soap box* The Avastin treatments are every 3 weeks. The Avastin puts great pressue on your cardiovascular system. I think my Dad could be walking or excercising more and eating better and I think he’d be feeling better. Currently, the Dr. keeps prescribing patches, pills, etc to control his blood pressure, and I don’t think they’re telling him he needs to change his ways… *okay… stepping off, for now…
Dad did purchase a harmonica a couple of weeks ago. I was sort of surprise, and also delighted by that. I asked him, “A harmonica? You always want to play?” He answered that he’d always said/thought, “When I retire, I’m gonna learn to play one.” Play away Dad! Looking forward to hearing your musical creations! For someone that loves music so much, it’s always been a bit surprising that my Dad doesn’t play an instrument.
This weekend my Dad’s youngest brother, KC, will be joining us, along with his wife Roxie and daughter Ruby. We’ll also have our cousin – I’m not sure if she’s a 3rd cousin – Taylor join us from SF. We’re gonna host brunch on Sunday and are planning an egg hunt in the park across the street, including Peeps in the water feature (thanks to my Aunt Trudy for that tip!) Not being a religious person, Easter to me is a celebration of Spring – a time of newness, freshness, light, sunshine, planting… There’s been some dark clouds hanging around this winter. I’m ready for the Spring!
Healing with every breath, Easter egg and Peep, Dad!
We have been so very lucky to have had my Aunt Lynn come to visit us from Brooklyn this past week. She has brought with her, a delicious bag of tricks! She came to stay with my Dad while Mommy Sue was off at a conference. And we have all had an opportunity to spend a bit of time with her as well! Not only has she come to be with my Dad and offer her wonderful company and assistance, she made it her goal to rid their freezer of as many partially opened bags of frozen bits as possible – I believe she eliminated 7 rubber banded bags. She has done this with her ususal delicious flair and we have all been the recipients of such wonderful, home cooked meals. For instance, tonight, instead of the usual corned beef and cabbage for St. Patrick’s Day, we had an English feast of roasted leg of lamb, parsnips and potatoes that were crispy on the outside and so soft and luscious on the inside, asparagus and for dessert… vanilla ice cream with butterscotch sauce (which she made) and bananas… the amount of butter, sugar and fat in general we’ve consumed this week could be a bit scary, and for me it’s been worth every bite… (What a few more minutes on the eliptical?)
I realize this is not the post you are used to. And sometimes we just have to forget about what is going on and enjoy the moment and taste each bite and delight in it – forget what’s happening in the real world… She has given us that gift… and for that I am so very grateful. I shall miss her when she leaves tomorrow afternoon.
Healing with every breath, and tasty bite, Dad.
A brief update…
On February 17th, Dad had a follow up MRI which looked better than the December one. This was good news! Mady was concerned about his blood pressure, a result of the Avastin, and changed his medication. She also lowered his dose of Decadron, the steroid that has assisted with swelling. She said this was going to be hard. And it has been. It’s pooped Dad out. He’s also been having some back pain. And he’ll have moments when his right side (or left side?) will droop. Mommy Sue was concerned he was having mini strokes, I was concerned that maybe the doctors weren’t getting the whole picture and were missing something, as the back pain started prior to his reducing the Decadron. Dad and Mommy Sue met with Dr. Zhang, the oncologist in Santa Rosa administering the Avastin. He said that the droopiness could be caused by the Decadron, as one of the side effects is muscle weakness. His lungs were clear, my concern, as pneumonia can cause back pain, and his blood pressure is still too high. His platelets were also a little lower than they should be. It’s like you manage the brain tumor and there’s a whole host of other things you have to manage/figure out… never ending journey…
Dad was to have another blood test today to see if his platelets are within the Avastin range. He’s also going to go to the blood pressure clinic. Saturday, the boys and I are gonna have an overnight and next week, we are looking forward to a visit from my Aunt Lynn – she’ll be spending time with my Dad while Mommy Sue is at a conference.
Healing with every breath Dad…
Here’s a bit more information regarding my Dad’s MRI on Friday. The MRI looked better than last time. Mady, the oncologist, felt very positive about it. And his blood pressure is way too high. This is because of the Avastin. So they are switching his blood pressure medicine. Mady has given the all okay for Dad to get out and walk on his own and is encouraging him to travel and live his life. Yes, the results were good today, and that may not always be the case. A good reminder for all of us… He did not get the okay to drive yet, and Mady said that perhaps at his June/July MRI he would. The next MRI will be in Santa Rosa, two months. Mady is now on maternity leave and will be back in July. She has left Dad’s care in the hands of Dr. Peak, her boss.
So good news, and a reminder of how very precious life is… We already know, it can, and does, change in a moment…
Keep those good thoughts coming!
Healing with every breath Dad!
I had the good fortune to spend a little one on one time with my Dad this week. Mommy Sue was off to Sunnyvale and I spent the night with Dad. He seems stronger and stronger and I think the spending the night is more to allay our concerns than my Dad’s ability to take care of himself. He mentioned he’s itching to drive… I’m not sure if he’s ready to drive on his own yet. Mommy Sue wants someone to be with him when he walks – I’m pretty sure he’s probably strong enough to walk on his own. I appreciate her concern and I totally appreciate his longing for freedoom. My thinking is, Dad went through this awful treatment… the reason he did this and we encouraged him is so he could keep living. Not that he should do anything crazy and taking a walk seems pretty tame. I know he loves having his connection with his friends and the folks that have been hanging out with him, walking with him, taking him on errands and I’m sure he’d love to just pick up and go. He mentioned he’d ask the Oncologist this week – his bi-monthly appointment is Friday, Feb. 17th – about walking on his own and driving. I will look forward to hearing what Mady says… He will have an MRI again and he’s been going to bi-weekly Avastin appointments. He did have to have a red blood cell transfusion a few weeks ago and his blood work seems to be improving. Platelets keep growing and white blood cells are within normal range.
Keep those good thoughts coming! Healing with every breath, Dad…
I don’t post as frequently about what’s going on with my Dad, because really, not a lot is happening right now. At least not that we can see…
Dad returned to his Avastin infusions last week. They make him sort of spacy right after, but he seemed to be doing okay at the game on Sunday. He will continue with those every two weeks. His next MRI is on 2/17/12… this will be there first big appointment I will not be able to attend. This makes me nervous… I wanna be there! I want to know what that tumor is or isn’t doing! And I will depend on my sister to text me with any news. And I will post as I know and details become clear.
The new normal is, my dad has a brain tumor. There’s nothing I can do to change this. Except give thanks for the miracle of science, good friends, loving family and so much support.
Tomorrow my Dad finally returns to his Avastin treatments… This is a drug that helps prevent blood vessels from feeding the tumor and starving it which can stop it from growing and even help it shrink. (http://www.avastin.com/patient/gbm/about/index.html) It is given as an infusion and currently he’s scheduled to have these treatments every two weeks.
Because of the side effects from the chemotherapy, Dad has not been able to have more than one Avastin treatment so far. His Neurology Oncologist thought the Avastin, even only one treatment, was the biggest factor in the shrinkage of his tumor/mass.
Avastin comes with a whole host of potential side effects – especially on his cardiovascular system. And with monitoring and proper care – including getting him out for walks and increasing his mileage, we are working to keep those at bay!
Dad’s platelets were at 62, his White blood cell count in normal range and his Red blood count still needing to grow. Last week, I think Dad was feeling a bit disheartened as his platelets had gone down to 49… since I wasn’t sure of the cause or if it was a temporary fluctuation, I decided to withhold that information… Glad I did.
Healing with every breath (and drip) Dad!