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.

Sucky Setback

      On November 6, I went back to John’s Hopkins for my second check up on the clinical trial. Until they read my November 1 brain MRI, everything was good to go to continue on the trial. 

Unfortunately, the brain MRI showed another, very small, brain tumor and still some continued swelling around my other four brain tumors. The sponsors of the trial would not allow me to continue on the drug because of the new tumor – I suppose it is too risky if the results were not immediate or status quo.

This hit me pretty hard.  I was really counting on this drug to provide some way to beat down these brain tumors. I cried in the office. Which I do not like to do. My parents were there with me and am eternally grateful for their support. It took a few hours and a long ride home for me to come to terms with yet another set back in this cancer adventure.

There is some good news. The CT scan of my body showed no new activity in my torso. There was a small spot in my liver that looked new – but no change In my other liver tumors.

As a completely different side story, the day I went to John Hopkins, I decided to go for some ‘retail therapy’ and stopped by the gas station afterwards. I really should not have driven, but I wanted an hour to shop for myself. While at the gas pump, I somehow tripped over the gas line, and landed on my face – right side. I really knocked my head hard – and scraped up the right side of my body.  It was terribly painful, and it happened so fast I thought I blacked out. I somehow got up off the ground, finished gassing up and limped home with my contact lens out of whack and leaving a shoe behind. I was so humiliated. It was not a good Wednesday. I was miserable and embarrassed and you should see my face. It looks like I got into a fight – with a big black eye and bruised cheek. And I had to work this weekend – with PTA’s board of directors in town – me and my black and purple bruised eye and ego. It sucked telling people my story. Just one more thing…

I want to try to stay the course – be positive and make it through this next stage in my cancer as I try to always to. I need hope to keep moving.

I see Dr. Wilkenson next Wednesday. I pray she give me some options and hope.

28 Days Later

No, it’s not a recap of a horror film. It is a recap of my life as a lab-rat for the last 28 days on the experimental drug Neratinib (HKI-272). The past few weeks have been mostly uneventful from side effects that I can easily attribute to the drug. The side effects from the steroids continue to plague me more than anything else. It’s to the point where I have more frequent bouts of depression and mood swings. Being overweight, still not sleeping more than 5 hours in a row and the muscle weakness really gets me down. 

My daily drugs - 7 types; 13-15 pills. Awesome.

I had my first check-in at John’s Hopkins this morning, where they did my blood work and tested my physical and mental condition. All tests were fine – there were no red flags in any of the results that would indicate the trial has affected me negatively. I scheduled my next CT scan and brain MRI for November 1 and by November 6, I will get the results from the John Hopkins doctors. Then I’ll really know what is going on inside of me and if the drug is working or not.

In the meantime, I am definitely trying to eat less and incorporate healthier choices in my diet. I am reading lots of positive, life-affirming books to try to keep my spirits up. I am working on de-cluttering my closets, working at National PTA, working on not being a pain in the butt to Chris, who god love him, often sees the uglier side of me. 

So 28 days later, I am still alive and kicking, so I have that going for me.

Love to you always.

I am a lab rat

It's official. I am enrolled and one week into my clinical trial drug. I am a lab rat. So far, I have not experienced any side-effects from HKI-272 (Neratinib) pills that prevent me from doing my daily grind. I get tired easily when I move around too fast, and when I go up a flight of stairs, I get out of breath quickly. Perhaps it’s the extra weight I am carrying – which is causing me more stress than anything else. I had one episode of diarrhea (gross, huh) and Imodium fixed that after one dose. And I still should not drive until I get a good ‘swelling has reduced around your brain tumors’ report.

I go back to John’s Hopkins on October 15 for blood work and cognitive testing. The docs also give me written and oral tests to check my memory, emotional state and speed of responses to questions, and they check my motor skills to see if my brain is changing in any way. I get my next MRI and CT scans in early November, so I will not know what is really going on inside of me until then. I am always in an eight week cycle of waiting-for-results mode.  

Have I mentioned lately how much I am sick of this disease? I hate it. I really do. I am sick of the 10-12 pills I take every day. I am sick of waking up at 3, 4, 5 am every night. I am sick of my face looking like Ursula in the little mermaid. Seriously, my neck actually wiggles like a turkey and my face looks like a moon pie. I can’t even fit into most of my clothes because my torso is so bloated.

Yet, I am trying to keep it together. I am trying to cut back on carbs and sweets and salt. I am trying to find semblance of control in this stupid mess where I can’t see, feel or know if anything is working.

As usual, I don’t like to end a post on a negative note. Chris and the kids, my family and co-workers continue to be awesome supporters. Erin and Grace are doing well in college and Jake likes his ‘only child’ status at home. Weekends in the valley with Austin and Taylor and Chris are a sweet relief from the chaos of the DC area. There are many blessings in my life. And I appreciate each and every one.

What’s New in Annie's Adventures in Cancer

Here is the latest in my cancer adventure...

My brain tumors continue to be the focus of my doctors. I had a recent MRI on my brain and aPET/CT scan on my body. The results of both tests were not great, but not terrible.All four of my brain tumors (or necrosis – dead cells – they are not sure what is making up the mass) continue to have swelling around them (which the radiologists say is ‘odd’) and do not appear to be shrinking. From the PET scan, my liver had a tumor that looked active, and there were some lymph nodes in my torso that were ‘lit up’ as well. 

So what to do with cancer that continues to show up and brain tumors that don’t go away? With limited options on how they can treat my brain (no surgery, no more radiation) the next step will be - ah - experimental.

There just so happens to be a clinical trial at the leading cancer research center at John’s Hopkins, that is testing a new drug that may attack the cancer in my body and also in my brain. A link to the clinical trial details and the drug is below for all you medical nerds. Last Wednesday, after an entire day at the amazing Sidney Kimmell Cancer Center in Baltimore – I got accepted into this clinical trial. They are taking 5 people and I am #2. This study originated at the Harvard medical school, and is being conducted at a number of other cancer research facilities around the country.

The experimental drug is an oral medication, with the mainside effect being – gross – diarreah. It can be controlled with immodium. I just have to be vigilant about it. If all goes well with my insurance and baseline scans, I start the drug in two weeks. I am off all other cancer-related meds now, only taking 4mgs of steroids and anti-seizure meds.The steroids continue to be the biggest pain, with weight gain, face and torso bloating, sore legs, thin skin, acne, and worst of all, lack of sleep. Still, I can get up every day, eat (too much) and go to work, so I should not complain.

The good news in all of this is 1) I only need to go toJHopkins in Baltimore once or twice a month and 2) I can get most of my testing done in labs near me and 3) with a new drug, there is hope that it will work,and I will be alive and kicking for years to come.

My parents and family continue to be supportive, driving me everywhere, and helping me stay positive.  I will continue to fight this, and with all the prayers and good wishes from everyone, my blessings will continue.

That’s the cancer scoop!

Love, Annie

Clinical Trial Details:
http://www.hopkinsmedicine.org/kimmel_cancer_center/research_clinical_trials/clinical_trials/search_results/TBCRC022