Therapy Helping Slowly

I have no incredible news. I took a fall last weekend at the valley house –tripped on a mat on the deck and hit my face on the deck railing. Chris and Austin were right there to help me. Luckily it was not nearly as bad as the gas station fall. I have a scrape on my face, my right knee and some general bruising. All because I am clumsy and did not look down. And of course my reaction time and strength are low.  Slow and deliberate is how I must be… which is no easy thing for me.

I just had physical therapy today. I went in frustrated and teary about how long it takes me to shower and dress and how out of breath I get. I went out of therapy feeling stronger and more confident. I have five more sessions. I really like my therapist, Lisa, at Fairfax hospital. She pushes me just enough. 

I love the cards and letters and gift baskets people send me. And of course the prayers and well wishes from countless others. I swear, it all keeps me going! 

Love and peace,

-        Annie

P.S. My wonderful husband turns 44 tomorrow (he’s caught up to me!) and I have to give him a shout out for making me walk around Target to help me gain strength and stamina. And it has the added bonus of buying or wishing we could buy stuff we really don’t need. Damn, you Target, and your amazing discounts!  Resistance is futile! 

P.P.S.

Let's see who can see one of my tumors in this MRI image (hint - it's in the brain stem area - the bad, bad place)

 

Brain the Same – Good News

Every day this week I had an appointment: I had physical therapy on Monday and Wednesday, a brain MRI Tuesday, and met with my radiologist, Dr. Bajaj this morning.

I was anxious about getting today’s brain MRI report. As it turns out, my doctor said there were no significant tumor changes compared to my last MRI 4 weeks ago, and no significant changes from my last three brain MRIs. In the world of cancer, believe it or not, this is really good news.  It’s not getting worse – and I am pretty happy knowing my physical downward spiral is linked to prolonged steroid use – not growing brain tumors.

Dr. Bajaj and his team of colleagues do not know what to make of my case – especially how the tumor in my pons (brain stem) is not showing any effects on me. In their experience, the location of that tumor typically causes patients to lose all types of body functions (the basics of walking, talking, breathing, etc.).  And if for whatever reason, the tumors do start to change or grow, I may be looking at some more radiation – if only to try to trick these little suckers. 

Although I am still at a physical low point, it’s all because of steroids.  I am down to 4mgs a day – the lowest dose in a year and a half. I’ll stay at this dose for as long as I can, and along with PT, I’ll get back in shape, build muscle, and lose weight. That’s my plan.

Physical therapy is tough. After three sessions, I am seeing some improvement in strength and balance. It sounds silly to you ‘normals’ but at my last session I was able to stand up from a sitting position without using my hands to push off the chair. It was one of the good moments in life. I am impatient – I want this to go faster. However – if I push myself too hard, I do regret it. 

In conclusion (don’t you love that phrase?!) I know something that the doctors do not. I have been blessed by the highest power. They may be puzzled about my case – I am not. I am here and alive because of God’s hand. There’s no question about it.

Love and peace to you all. I have so much gratitude for how you ALL touch my life with prayers, cards and good wishes.

More news in a few weeks
Love, 
Annie

Short Term Disability – Kickin- it At Home not so Bad

My lovely daughter, Erin, reminded me that people want to know what is going on with me more frequently than my usual random blog posts. It’s just so hard for me to share how I am feeling – it sounds so selfish. Still, I know how many people (more than I thought) are thinking and praying for me, and she’s right – inquiring minds... 

Today I go to Dr. Wilkinson (oncologist) to get my next set of orders.  I had physical therapy this week that kicked my butt – and was very necessary to see what I need to work on to build muscle and move ‘normally,’ not like a wobbly drunk. Count your blessings if you can put on pair a pants and a shirt in less than 5 minutes without getting out of breath or holding on to a wall.

I have to give shout outs to some recent correspondence I received from the entire Cakouros family – including hilarious memories of ‘growing up St Philip’s-style’ the basketball, sleepovers, swimming, etc. These letters seriously made my day! Shout outs also go to Amadie and my sister Joanie for providing various scrumptious food items. Last but not least – Amy, her momma and aunt reminded me through memories and stories and laughter that gave me tears of joy and not sorrow. How blessed am I?

A few more awesome moments these last two weeks:

•  I finally learned how to use my iPod, buy songs, make libraries, etc. (thanks, Jake). I LOVE my 260 songs and am trying to restrain myself for going song crazy.
• Without our dogs, Bentley and Bodie, my days at home would be so dull. They are truly brothers from another mother – snuggling with me then wrestling with each other – it’s a true bromance.
•   Snow. Love any and all flakes.
• My college girls tell me how much they are enjoying school and doing well. It makes my heart happy,
• All my drivers and errand runners – you rock.

Ok folks. That’s all I can write for now. I’ll do my best to post more often. I’ll do my best to stay on this planet as long as I can.

Love and Peace,

Annie

I use a walker now. And I am banned from the basement.

Yup. It’s come to that. I had a spill at the top of my stairs yesterday (my bedroom is in the basement.) I just did not clear the top step so it was a fall forward – not backward. Unfortunately Jake was there to see me tumble and land on my right side – I was kind of yelling in surprise and pain while doing a 4-part landing. I did not hurt myself that much – there will be bruises – but more mental disappointment than anything else.

Jake was angry. He’s angry at this whole thing. ’Mom’s should not be like this.’ He thinks I can get over this with a strict exercise regime. I know he’s scared and upset and wants me to be better. He helped me to my feet and we talked about the incident later. I am proud of his ability to express himself so well.  I think he may need to talk to a third party to express his feelings on this whole thing.

It always brings me to tears having my loved ones (especially my kids) to see me like this.This is not me – weak – helpless – restricted.  Moments when I think I can overcome anything and moments when I want to phone it in forever.  Saturday in the valley Chris had to help me off the floor. It was terribly embarrassing but true.

My next set of scans on my brain and body will probably happen at the end of January. I am only taking steroids and Keppra (anti-seizure meds), my daily antidepressant (which keeps me on this planet) and an antibiotic 3 x a week. It’s weird to be off so many meds. We’ll see what the  scans reveal.

Here’s the good stuff:

·  I am home from work on Short Term Disability. Less pay, but gives me time to heal and rest my work-psychotic brain. It’s killing me and helping me at the same time-- not to be working for an organization that I swear kept me alive the last 2 years. I am still not sure when, if and how I will make it back 

Chris gets the super hero award for being my sounding board, doing all the chores and well – for trying to hide the fact that he is terrorized about my health too.

·         Jake taught me how to add songs to my iPod, and I was a terrible student.

·         The girls are back to school and I miss them but I am very proud of them.

·         I received a card from a woman who I hardly know yet it was a random act of kindness that shined a light in my heart.

·         As always, I look forward to a nice warm shower, a layer of gold bond to soothe and take the pain away from my rashy skin and take a nap once a day – it’s the little pleasures.

·         I am getting new glasses and a new left contact lens. Hazah – sight!

It’s peace out time now. Projects while I am home are many – mostly paperwork. Chris and I have so much to synch with our millions of investments and properties. Uh yeah.

Keep those prayers a comin. I still have much to live for and be thankful for.

-          Annie

Christmas was awesome - since then, notch so much

Wish I had better things to report. Physically the muscle weakness continues to crush me. I've seen another neurologist and he was not that helpful. My work situation is about to take a change to the fiscally strangling, and the skins lost so what could be worse? I suppose I could be dead, huh.
  
The kids had a great, great Christmas I think and they really are what matters. Chris and I and his kids spent our first Christmas together with my kids which was such a blessing.

I have so enjoyed my girls being home and will miss them terribly this Sunday when they go back to school.

Well I have been a total emotional mess for about a month and I cannot put into words how amazing Chris has been and my parents have been. I have terrorized them with mood swings, saying i am giving up one moment and then switching to the fighter. I just don't know what to think one moment to the next. i do know this physical pain is crippling to my usual go-go self.

So you few followers I am still hanging on somehow. Will try to keep on keeping on. Love to you all.

Annie’s Challenge: Cancer vs. Christmas

During the last 6-8 weeks, my cancer meds have changed to two kinds of oral chemo pills and my body has transformed into the worst state it has ever been. I feel as though I’ve been fighting a mental and physical war. I have experienced crippling body and soul punches where I feel as though my days are numbered, and this could very well be my last Christmas. I wobble around like a bloated drunk, not feeling balanced, with numb, cracked fingers and feet and little red spots all over my body. I have to walk and climb stairs very slowly because I have no muscle tone in my legs. Quite simply, I am a train wreck. Quite frankly, I am barely hanging on mentally because slowing down is not what I do.

 

However, all is not lost on me. Even during this physical and mental anguish, I have experienced  over-powering, blissful moments, where I can’t stop smiling, or my eyes tear with joy, knowing that life is still with me. Knowing that God continues to put breath in my lungs and blesses me with so many wonderful experiences – I somehow carry on. Here are some of these moments I treasure:

 

·         A spontaneous hug from Jake

·         Chris holding my hand to steady me, help me get up when I fall, getting me to walk the dogs at night.

·         Driving on a short trip, by myself, with the windows down, listening to my favorite station on Sirius – the coffee house

·         Waking up in the Valley, putting on my forever lazy,  and drinking coffee while everyone sleeps

·         Hearing my girls laugh at their dance videos and seeing they are growing up so confident and smart

·         Date nights.

·         Getting together with any and all family and friends when I have the energy to do so

·         Cooking something new that turns out to be delicious

·         Finding the best Christmas Tree ever, chopping it down and decorating it with my kids

 

So with Christmas upon me, one of my favorite times of year– I am trying to find ways to get over my body aches and pains, and focus on the blissful moments. It IS Cancer vs. Christmas right now for me. There is so much to be done and what little time and energy I have seems overwhelming. My brain, with it’s FIVE tumors a blazing, never seems to shut off with lists of things I need to do and the overpowering need to do it all myself. I drive my family crazy, I know. Relaxing is out of the question.

 

I have a Drs Appointment tomorrow where I will get my PET/CT results, brain MRI update and who knows what kind of news. I give up even guessing what’s next for me.

Cancer vs. Christmas – I really want Christmas to be the winner – to be the best – to help me forget for a few moments that I am not sick, I am not a mess, I am still here and there will be more wonderful moments.

 

Love to you all.

Annie

What is up with my head?!

After I got punted from the clinical trial, I headed back to my oncologist to get the next plan. As of yesterday, she prescribed a double whammy of oral chemo – Xeloda (two weeks on and one week off) and my old friend, Tykerb every day. Both drugs have the potential of going into the brain – which continues to be the part that needs priority treatment.

Honestly, I they (the medical establishment) does not know what to do with me. I mean, people with brain mets usually live 3- 6 months, and I’ve been around for 17. It helps that most of my tumors are not in critical functioning areas (except for one in my brain stem).

Still, the MRIs show swelling around the tumors and I have to say, I am pretty sure I am experiencing outward symptoms from the brain tumors for the first time. When I walk around I feel like a drunk. I can’t get my balance, and sometimes my vision is fuzzy. The steroids continue to cause the bloating, weight gain, and muscle weakness which does not help my balance. I can still go to work, exhausted at times, and typing is beginning to get difficult. Climbing any stairs is a chore.  If I were an extremely depressed pessimist, I would say this is the beginning of the end.

Good thing I am not an extremely depressed pessimist. I’ll start taking this new oral chemo, and dealing with the new array of side effects, and thank God every day I go to sleep at night and wake up again in the morning able to function in some way.

I thank God that I get to see my two beautiful daughters come home this evening for their Thanksgiving break for a few days. I thank God I have my amazing husband who looks after me and worries and helps me and expresses his feelings of concern about my condition. I thank God every day for my parents who still drive me everywhere and put up with my moods and impatience. I thank God every day for my son Jake who showed his frustration about why the doctors can give me what I need to get better – he just wants me to feel good and I love him for it. I thank God every day for the dozens if not hundreds of family, friends and survivors who pray for me and think of me and wish me well. I could not go through this without so many.

I will continue to find strength.

Love to you all.