Wednesday, December 21, 2011

Keep On Keeping On: Decorating Cookies for Santa

Yesterday morning, I awoke in a lot of pain. After dosing myself up on Norco and Ibuprofen, I knew the couch would not be my friend for the day. I also knew I had to come up with a distraction otherwise I would go nuts. My energy level was low. Yet, after doing my morning yoga routine, I felt I could handle taking my dog for a walk.

It was my toughest walk to date. Maybe because I had not done it for a while; maybe because I was in pain; maybe both. I sat down twice. I got extra irritated at my dog. But I made it around the block and started to feel a little better upon my return. It was then that I started to drink extra water. I am not a water drinker and some days I am adversely opposed in general. However, it seemed to be the thing to do yesterday morning. So, I indulged. I felt even better still.

The house was bustling. I cannot even tell you what I did in the subsequent morning hours. But thanks to my friend Barbara, I decorated cookies with my kids yesterday afternoon. I have never been a baker. The thought of rolling out dough and using cookie cutters followed by mountains of frosting and sprinkles has never appealed to me as an adult. Yet, Barbara and I came up with a plan. She suggested that she bring me plain, sugar store-baked cookies and we could decorate them without going through the trouble of baking them. .

Me and the kids, working away!

We all got into it. Even Harrison. In total, we decorated 24 cookies. I felt like a kid. And, I loved spending time with mine. Barbara had given me a gift far greater than simply running an errand for me. Decorating cookies was like an awakening, keeping me distracted and nearly pain-free until late afternoon.

 Will distractions, water and a walk work like this every day? I hope so. But if not, I know my couch is always here, like an old friend. And I will just keep on keeping on.
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Tuesday, December 20, 2011

Rob Cares Guest Post

I wrote a piece about my caregiver, Steve for my friend's blog. He published it today and so I thought I would share it here as well. Rob provides a remarkable service for cancer caregivers, lending support and resources to those caring for cancer patients. He is inspiring and I would encourage you to check out his site. In the interim, to view my post, please click here.

Saturday, December 17, 2011

Cancer Has Progressed

Yesterday, we learned that my cancer has progressed in my liver and is also confirmed in my lungs. In addition, I have a mass under my arm that we are assuming is a tumor. No need to biopsy, thank goodness. Not such good news.

Holding Steve's hand looking at the scans yesterday, I was overwhelmed. We knew I had two nodules that they were "watching" in my lungs...but to now have 7 or 8 confirms that the two original nodules were cancer. Also, the pain in my side which I originally thought was from my back flap reconstructive surgery was not so much from the surgery but from a new mass residing with my lymph nodes, back where my original cancer was in 2009. I guess now there is no need for me to curse the surgery, as I had been doing from time to time as a result of the constant pain. That tissue is all soft and good.

So, what is the plan? To switch to UCSD. I cannot begin to describe how cared for I felt yesterday by Dr. Sweet as he scrambled to get answers and conversed with Dr. Boles, my new UCSD Oncologist about a plan for my care. We were in his office for an extra 90 minutes....but the outcome was well worth the wait.

One thing Dr. Sweet suggested was some radiation on my side for the pain. As many of you reading this may know, since I already have been radiated on that side, we still are not sure if this can be done. However, if it will get me off some of these pain meds...I am all for it. That appointment is next Wednesday.

I think the most disheartening thing was that we learned that my fatigue is likely disease related, not chemo related. This is really hard to take because I am really tired. Dr. Sweet is going to try to qualify me for a transfusion for my anemia in order to give me more energy for our trip. I hope he can.

Through a message from Dr. Boles through Dr. Sweet, I learned that I am not a candidate for the clinical trial at City of Hope, but my progression will perhaps get me onto the clinical trial that I had been hoping for at UCSD. I see Dr. Boles immediately after my vacation and she asked that I arrive with scans in hand. They have been ordered and ready for pick up.

We are very scared. Yet we know that nothing really has changed. We knew triple-negative breast cancer is quick to spread. We knew that we needed to find a chemo drug that worked. All that has happened is that we have not found a chemo drug that works. We have only tried three. There are more out there. We have hope.

Yesterday is a bit painful for Steve and I to relive. So, I ask that we not receive a lot of questions at this time regarding my treatment. I will try to blog through out the week to keep all updated.

On a positive note, I had a little conversation with my body yesterday and came up with a theme song: "I am a Believer." I think my body needs to know that I believe in it regardless of what the scans show. And there is some deeper logic to this too; so you do not think I am completely crazy. I ask that when you think of me, think of this little jingle please. Maybe I will even try to come up with alternate lyrics for it...just for fun. I have nothing but time, after all.

Friday, December 16, 2011

Kindness Made My Day

On Wednesday, I had an appointment with plastic surgery. I have been having quite a bit of pain on my right side that seemed to be radiating from the muscle they moved during reconstruction. I wish this was the case. Through her extreme due diligence, Cindy Carson, P.A. found a 4 cm. mass on my right side. My mom was with me, thank goodness, as it was an emotional moment. Though, at this point the mass could be anything, like a mass of fat or an angry lymph node, but it would have to be checked out. Luckily, I had a chest and abdomen CT scheduled for the next morning.

Wednesday night was Madison's "Holiday Sing". Arriving late for a number of circumstances, seats were at a minimum. In fact there were very few seats left at all. However, while walking through the school's courtyard, an acquaintance offered Steve and I her seats in the front row. Completely unsolicited. She said she was going to stand anyway as she had a toddler in tow. I was not eager to take someone else's seats but also knew my chances were slim to none of sitting anywhere close to my daughter. Either way, her kindness warmed my heart and though she did not know it, put a positive spin on what was a scary day.

After returning home, Steve's brother called to let us know that he had received a $100 gift card from Steve's cousins, Kimmy and Mark to help with our trip. Wow, was I all could think. It was like someone from above had not intended for us to have such a scary day and was trying to make up for it. Give us hope. Show us kindness. And that made my day.

Wednesday, December 7, 2011

Oh, Christmas Tree

Mornings are my own,
Early though they seem.
I arise without a peep,
Make coffee, write, gleen.

Special time to be had,
Lights shining low.
Computer is my company,
Screen shining aglow.

But in the Christmas season,
Another friend shows true.
It is our Christmas tree, lights blazing,
Familiar ornaments speaking anew.

It stands to the ceiling,
Its comfort a large span,
Its branches may be fake,
But its spirit is unplanned.

A familiar friend, you are,
Oh Christmas tree to me,
Your glow warms my heart,
Reminds me I am not alone, you see.

My spirit continually searching,
For the secret that cancer aims to tell,
My Christmas tree is a reminder,
That I am grounded, unspelled.

Tuesday, December 6, 2011

A Walk Up Hill

Every morning, I take my dog for a walk. I do so for his benefit as much as mine. He needs the exercise, as do I. This morning, I changed up our route. Instead of the easier walk that I normally do, I walked down to the Madison's school to take care of a little business, tying Cooper up outside of the school far from the classrooms. It is a beautiful brisk morning, sun shining brightly despite the chill in the air.

The walk down hill to the school is about 1/3 of a mile. I have walked it many times before, in earlier years, walking Harrison to school pushing Maddie in a stroller. In later years, walking home on starry nights from school events where parking would have been more troublesome than walking. Other times, riding bikes to the school to practice bike skills/safety with the kids. The exercise has always done us good, and our proximity to the school is really one of the best things about living in our neighborhood.

My chemo makes me extremely winded. Climbing the stairs in our split-level house, especially both sets, like  if I were to go from the garage to the kids bedrooms, makes me winded.  Walking sometimes even a short distance does the same thing. This week, for example, on my walks around the block, twice I have had to sit down on the curb for a few moments to catch my breath.....and this is walking the most flat route possible.

So, this morning, imagine my surprise when I walked uphill from Madison's school without having to sit down. Tired, I am. But I made it home practically with ease. I am preparing myself for our upcoming trip by trying to push myself a little bit. We plan to rent me a wheel chair for the parks, but I do not suppose I will be in it the entire time, nor would I want to be.

For me, this morning's walk was a blessing, for I am worried about slowing my family down by not being able to keep up with all of the activities that will be available to us in Orlando. After this morning's walk, I am encouraged. Maybe tomorrow, I will try the same walk again.

Monday, December 5, 2011

A New Dawn

It was 6:40 yesterday morning when Cooper jumped onto the couch with mouthful of socks, his way of telling me it was time for him to go out. I had been dozing on the couch, but even in my drowsy state, I remembered that sunrise would occur around that time. I hopped up to let him out.

Our backyard faces towards the East. I could see the sun's reflection on the mountain in the distance and a rush of gratefulness swept through me, much warmer than the cold air I felt as I opened the door to put Cooper out. It was a new day. I was here to see it.

The trauma of the night before was unrevealed to me as I had not reached for my phone. In that moment, I knew that I had a new nephew, but I was not sure how and when he made his way into this world. The sun rose as I found two texts from my brother.

Jedidiah Hallsted Dale had been born around 1:00 a.m. via c-section, after more than 13 hours of labor. It took three doctors to retrieve him from Kelly's petite body. She lost A LOT of blood, as the bleeding did not stop readily. My brother undoubtedly saw his life flash in front of his eyes. My heart sank. This is not what I wanted for him. My sensitive brother (and Kelly) who have flown 1,000's of miles to help me through my cancer journey had just had what should have been the happiest experience of their lives turn nearly to tragedy. But not quite.

When I saw the new dawn yesterday, I thought of how their lives had new meaning and of how new beginnings bring new hope for bright tomorrows. I know they have plenty of those ahead of them. Jedidiah is truly a blessing. I can hardly wait to meet the little guy. To hold him and tell him all about his daddy and how much I love his mommy. To spend every minute I am able wishing for him all the blessings that have been bestowed on my two kids. Wishing these same blessings for Darin and Kelly.

I do not know how much time I have left. It could be five years; it could be one; and it could be 50. After witnessing from a far all that Darin and Kelly had to go through to bring little Jedidiah into this world, I cannot imagine not living to see him graduate from high school, college and even get married. Hope....isn't that was the dawn is all about?

Thursday, December 1, 2011

Come Visit Me

I took myself off the grid yesterday. Why? Mainly because my finger tips were peeling and something about playing on my iPad did not seem like a good fit. I was lonely. I was ancy. I felt miserable; though, I tried on several instances to pull myself out of it: I took a bath; I walked the dog; I ran a quick errand; and, I pushed myself a little to accomplish a menial task or two. Still, it was a fairly miserable day.

It is a strange feeling to be ancy and have no energy at the same time. It is almost as if there is bouncing ball inside of me, a constant pinball game in motion. I think that is why the distraction of this blog, Facebook and Twitter are so good for me. But I can tell you what would work better: a visit from a friend.

Yesterday, someone stopped by just to give me a hug. Another friend came by to take Maddie to gymnastics. Both times, I visited for brief moments. Not to diminish what either of these friends did to help that day; they were wonderful. But honestly, I think the biggest help they gave to me was to help to get me out of my own head for a few minutes.

I did not even pick up a book or a magazine yesterday. I suppose I could have. This is the buggar of it all. I just did not feel like doing anything. However, if someone would have come and sat down in my living room, I would have had no choice but to talk and maybe even laugh a little.

Another factor that is hard to explain is the fact that I will more than likely never come see you. Sounds awful, doesn't it? It sounds down right lazy as I write it down. However, my reality is that by the time I expend the effort to even organize myself to leave the house, I am already spent. This does not include any primping I might want to take on, nor does it include feeding myself, etc. Just organizing. Grabbing my keys, finding my sunglasses, making sure I have my purse and my cell phone. My big outing yesterday was to the bank. I had prepared myself to run two other errands, but by the time I got to the bank, I was so tired that I could not fathom driving myself anywhere else.

Which leads me to another impediment: driving. Driving stresses me out these days. I worry that I am too tired to drive and put myself and others in danger when I am on the road. I avoid it, preferring to drive only between the hours of 10-2 and only short distances at that. Writing this, I sound like an old lady. I remember my father-in-law telling me the same thing about his preferences for driving. He was 70. I am 40.

Anyway, with this blog entry, I officially let the cat out of the bag. The best thing you can do for me? Come visit me. Maybe not always unannounced...but maybe do not give me too much time to think about it, either. Don't wait for me to call you. I will call, do not get me wrong...but time is an interesting character these days. I have a concept somedays...some days it completely escapes me like the leprachaun, leaving the house in shambles as it searches for its pot of gold.

In no means do I write this to complain, either. I have a huge network of support. A network that includes very busy people, wonderful people. However, I just want to make it known my thoughts and feelings, as is the purpose of this you will all know. Just in case you should ever be in my neighborhood.