While Brain Looks Good, Body Does Not

Just when I get some good news about my brain tumors, I get results from a recent PET/CT scan that show 'active' lymph nodes in my chest and torso. This concerned my Oncologist so much that she recommended I get back on chemotherapy. She recommended a drug I have not tried - Abraxane. I start my first treatment today.

Once again, when cancer that is one part of my body seems to be under control (i.e. brain), it is active in another part. Yeah - this pretty much sucks. Like most chemotherapy drugs, I'll have to take Abraxane once a week, and it does have side effects (like lowered white and red blood cell counts and surprise, surprise, hair loss). It looks like I will not have a full head of hair for awhile. I suppose I should be more concered about nausea, diarreah and a compromised immune system, but for some reason the lack of hair growth is getting me down more than all of that.

As I struggle with another cancer phase, I still am trying to see the bright side of my life. I am able to drive now (yay!), I have great insurance, I am used to wearing head wraps, I am happy waking up every day knowing I have an awesome family, lots of people who love and pray for me, a decent job and a roof over my head. And Christmas is coming, which is one of my favorite times of year.

This is difficult. No question. Still - I plan to be around for awhile.

Love to you all!

GOOD NEWS - Brain Tumors got the Beat Down!

Family and friends!

Today, I got the MOST EXCELLENT news that the four tumors in my brain have all significantly shrunk in size which means the radiation surgery was a success! My radiologist was VERY pleased with the results, and said that the tumors will probably continue to shrink as the cells die and are absorbed. Even though the tumors are still there, they are much smaller (in some cases by more than half their size) and there is no swelling around the tumors as there had been eight weeks ago. There were no new tumors either. Chris, my mom and dad and I gathered around the computer screen when Dr. Bajaj showed the scans of my brain side by side - with the MRI scan from 8 weeks ago and the MRI from 2 days ago. We could clearly see the results ourselves - it REALLY was amazing.

Of course I had my expectations low going into the appointment. I was terrified actually. So to get this news - words cannot express how thrilled I am. I know cancer will always be lurking in me and I will always be monitoring it and waiting for results. It's this positive direction that I want to keep heading. I am still in shock - but it is a happy shock.

I am so incredibly grateful for the news, for the surgeons, for every prayer, everyone who supports me, for life, for my wonderful family, for feeling good and now for being able to look at the future.

Here's what happens next with treatment:
1. Monitoring brain with regular MRI scans (next one in 8 weeks)
2. Continuing Herceptin every three weeks to treat the cancer in my body
3. Quarterly PET/CT scans to check the cancer in my body (next one is last week of November)
4. I get to drive again in Mid December.
5. Tapering of steroids ending by November 30.

Please spread the word in all of your networks that EVERYONE's prayers and wishes and positive thoughts REALLY made the difference. This is beyond me and even beyond medicine.

Love and kisses and hugs and thanks to you all!

- Annie

October had Highs and Lows - Ending with Halloween Fun

In Annie’s health world – October was ‘rock-tober’ because I felt consistently energized and almost  ‘normal’ for the whole month. I am down to 8 mgs of steroids a day (from 24 mgs) and my hair is starting to grow back. It’s in weird patches, but at least it is growing. Maybe the wraps will go away around Christmas.

While feelin’ good - I happily have been able to tackle many household projects that have long been overdue – cleaning, organizing, throwing out junk – my weekends have been very productive. I have the need to lighten my load, clear out closets, and organize things. Chris and I took on a temporary tenant at his house in the valley, and we’ve done lots of work around his house too. I have been able to get lots done at work, too and I am really liking my job at PTA.

One the ‘lows’ this month – and this is a big one – we had to put our loving dog, Lance, down. Most of my family knows the details. In a nutshell – he developed an inoperable tumor on one of his front legs, and could not walk. He started limping on his front leg and it gradually got worse over a month. Two weeks ago, he was in so much pain, we took him to the vet. There was no medication that touched it. He developed a fever, stopped eating and drinking, and barely moved for three days. With the advanced arthritis in his back legs, it was too much. Anyway – at the vet, he went peacefully – it was a very Marley and Me experience. We are still dealing with the loss of his presence. Here is one of the last photos of him on his feet. Best. Dog. Ever.

Jake and his friend Jonathan

On a much lighter note – tonight we had a great Halloween. Check out the pictures. And I just heard my brother Dan and his wife, Courtney announced they are having baby number two in June. Life goes on!

Killer Grace

Devil Chris and Wifey Witch

My next big moment is getting the MRI test results on my brain tumors next week. Some days I am anxious about it. I think I cannot plan my life until after November 10. I really hope it is good news. Really. And I really hope I can drive again. Really.

Love to you all.

Feelin Good, Waiting for Results

It’s been over a week since the radiation surgery, and I am feeling pretty good these last few days. It’s the magic of steroids. They reduce the swelling around the brain tumors and provide me with energy and an appetite. The negative side effects of face bloating, acne, facial hair, and the inability to sleep in more than a four hour stretch at night – I can handle. I am thankful every day I can get up without feeling nauseous and I can go to work and be somewhat functional at home at the end of the day. I will be taking the steroids in reduced doses over the next 3-4 weeks. 

The next update I will get from my medical team on the effects of the surgery will be on November 10. Dr. Bajaj (my radiologist) will review the MRI scans I get on November 8, and depending on the results, will make a plan for next steps. I also meet Dr. Wilkinson (oncologist) later the same day to see if I need to change my current Herceptin treatments, which are now back to every three weeks. My last PET scan a month ago showed no significant tumor growth in my lymph nodes or liver. They are still there – just not advancing in size, which is good.

My hair growth is just now starting in patchy spots. It is way too soon to know how or even if my hair will grow back completely, and honestly, I don’t care. I don’t mind wearing wraps. I don’t miss messing with hair styles, cuts, products, and all that goes into hair-care. That does not mean there is a side of me that would like to look ‘normal.’ Of course that would be ideal. However one major conclusion that I have come to throughout this process is that feeling good is incredibly more important than looking good. I feel good.

As usual, I need to end this post with gobs of gratitude to my supportive family, friends and co-workers. My parents continue to drive my bald headed body to and from work every day, to and from dozens of doctor’s appointments, and have been there for me every step of the way. My patient husband, Chris and my wonderful kids and all those people who have me on prayer lists and offer smiles of encouragement – I could not get out of bed in the morning without you.

Love,

Annie

Stereotactic radio surgery - one more cancer adventure complete.

After 11 hours at Fairfax Hospital I got home last night at 7:15pm. My parents stayed with me just about the whole time. The surgery lasted 90 minutes. Chris took me home and nursed my head wounds. The worst part of the day was installing the head frame in the morning (see lovely photo). They gave me lots of shots of lidocaine to numb the four spots where they attached the 6 pound frame. The second worst part was waiting until 5:00pm in a room with a TV. Thanks to Grace I had some videos to watch to pass the time.

Everyone at the hospital was so nice. They made the experience as good as it could be. My biggest pain right now is the holes in my head are sore, where the frame was attached all day. Advil should take care of it. And I am on an intense steroid schedule again and those side effects are awful. But I need to keep taking them, to reduce the swelling around the brain tumors as a result of this procedure. I will get an MRI in 6 weeks to see how this worked, so once again I am in a holding pattern.

Thanks for all your prayers and thoughts and messages. You make this experience so much easier to take.  Thanks to mom and dad for being with me and for Chris who visited and held my hand and comforted me.

I love you all so much!!

Upcoming Procedures

Upcoming Procedures

My doctors scheduled my stereotactic radio surgery for next Tuesday, September 27. It is an all-day ordeal, starting at 8:30am at Fairfax hospital, when they literally screw a frame to my skull. I then get a few scans, and then I have to wait around with this frame on my head until about 4:30pm for the actual surgery to begin. That will take about two hours. Then I get to go home – no overnight stay. Other than scabs from the head frame, the side effects from the procedure should be minimal.

For you medical geeks, the link to the website below describes the procedure.

http://virginiaradiation.com/stereotactic.html

Today I had a PET scan (my usual quarterly check) and I get my results from that this Friday. I sure could use some good news, so I hope the cancer in my body remains under control.

I am still not feeling well in general, and I will be SO glad when all these tests and procedures are done.

Keep me in your prayers.

Brain Radiation - Update and Next Steps

I want to tell you about my latest cancer news.  I met with my radiologist Wednesday afternoon, who reviewed my latest MRI. My radiation treatments made some progress in shrinking three of the tumors. However, the tumor that is in my brain stem (which happens to be the most critical) did not appear to change in shape. In fact, there may be more swelling around it, which is not good. Left alone, the tumor growth and swelling will affect my motor skills, cause seizures, numbness, stroke, etc.

So he recommended that I get stereotactic radio-surgery. They would go in and zap all four tumors, and hopefully reduce the size of the one in the brain stem. They did not do this the first time, because they were hoping that whole brain radiation would shrink all the tumors. He said that brain tumors are fickle, and some respond to treatments, and others do not - it's all at the molecular level. Best case - the tumor shrinks and stays small so I can function normally for years to come.

Anyway - I do not have dates set, but I expect to have the surgery set up within the next two weeks. It involves about a 12 hour hospital stay and a day or two of recovery. I'll have to take steroids again before and after the treatment, which sucks because those side effects are the most annoying.

The good news is I still think my doctors are awesome, and I really know I am in good hands. I will keep fighting this and I know your prayers will get me through everything!!!

Summer is Over; Cancer is Not

I did not have the best summer. With the brain tumor diagnosis in June, followed by whole brain radiation, steroids, then new chemo meds, I have been reeling from the side effects. The last three weeks have been the worst – with nausea, upset stomach and general exhaustion dominating my life. I am not myself at all, and I am totally sick of it. I am sick of feeling sick. I drag myself up in the morning for work, and collapse on the couch at the end of the day. I can barely function at night. I am sick of not being able to drive. But even if I could drive, the amount of energy it takes to navigate the northern Virginia streets is overwhelming.

One bright spot is that I have been able to sleep much better, so I got that going for me.

Anyway – here are some pictures of the kids on their first days of school. Erin is settled in at ODU, Grace at O’Connell and Jake at Corpus Christi.

I get an MRI this Sunday, and my radiologist report on September 14. I get a PET/CT scan on Sept 20 and my oncologist report on Sept 22.

Cancer sucks. I am so done with it.

Who looks better bald?

Personally, I think Chris does. But the joke’s on him, because my hair will grow back eventually – one day (I hope!).

Since my brain radiation ended, I have been bald, tired and taking 1,000 mgs of Tykerb every day. I have not been at my best lately. Between the Tykerb, the Herceptin (every week now) and lack of sleep, I have no idea what drug is causing what side effect. Happily, I weaned off the steroids at the end of July, so at least the acne and face bloating has subsided. 

Anyway – the good news is it is not as bad as chemo was two years ago. I can function. I can go to work for 7 to 8 hours a day. I can feel somewhat useful around the house – although at the end of the day I am zapped. And I certainly can eat – so weight loss has not been an issue, which stinks.

Next time I write it will be after my much needed vacation in Nags Head. My family, including Chris, my three kids, my two step kids (Taylor and Austin pictured on the right), my parents and several siblings and their kids are filling a large house on the beach starting tomorrow for a week. There will be 25 of us together. The ‘big house’ we rented has plenty of room. Yes, it is a crowd, and yes it is not always perfect, but each year we have so much fun watching the cousins grow and play. 

Thanks to my parents and Chris and my kids for putting up with me and driving me around the last month. I plan to feel better and get my energy back. I will know more about how the radiation and drugs are working when I get my next MRI in mid-September.

Love to all,

Annie

New Meds Start Today

After a very busy, social, swim-team filled weekend of activity, today I get to start my new medicine – Tykerb. This is an oral medicine that is supposed to cross the blood-brain barrier to stop or prevent cancer growth in my brain. There are some side effects as with any medicine, but my attitude has always been not to anticipate anything and expect the best. There are always meds that can help manage the side effects.

My doctor’s office had to call my insurance company to see if Tykerb was covered, because apparently this drug uncovered would cost about $3,000. Yeah – unbelievable. Care First Blue Cross does cover it (thank God) so all I had to shell out is $35. Anyone interested in knowing more about Tykerb – here is link to a site: http://www.rxlist.com/tykerb-drug.htm

Here’s a pic of Erin, Grace and Jake from Saturday’s last meet at our pool Woodley, and it was Erin’s last swim meet of her career. They honored five senior swimmers who are moving on to college. I am so proud of Erin sticking with swim team from age six to 18!

Annie's Next Treatment Steps

Since I am finished with radiation, here is what is happening next:
1) In 8 weeks I get a brain MRI so they can see how the radiation did with the four tumors. The radiation is still working away in my brain, and I will experience fatigue for the next three weeks or so, and of course, I will be bald for a few months. My hair should come back. However brain radiation does a number on hair follicles, so there is no guarantee about the quantity or texture of returning hair. Yay for me.
2) Next week I go back to my oncologist, and I will start Herceptin treatments again every three weeks. That's an IV dose administered in my chest mediport. It's a 30 minute treatment - so it's not too bad. I do not really get side-effects from Herceptin.
3) In two weeks, I will start to take a new oral drug called Tykerb. It is a medicine that can cross the blood-brain barrier that will hopefully prevent new brain tumor growth. Tykerb may have annoying side effects, like diarrhea, nausea, rashes, and mouth sores. I try not to anticipate any side effects, and I know that if I get them, there will be meds to counter them.

So the Adventure Continues...

Still Working at National PTA

Throughout my radiation, I have been able to work full time. This has been really good for me. Since my seizure at the PTA convention, everyone in my office is aware of my cancer, and everyone has been so incredibly supportive and understanding. I really love my job. Last November, I had taken on many more resposibilites at the office - which was stressful. Things have stablized recently - I have new boss and some of my work is shifting to others.

It's been good for me to stay busy and keep my mind occupied. I hope I can continue to work throughout my next cancer treatment stages.

Side Effects - Unfortunately There are Some

Despite the relative ease of whole brain radiation treatments, there have been side effects that go from general annoyance to major pain in the butt. Since my seizure last month, I have been taking steriods and anti seizure meds. The steriods keep me up at night, bloat my face, cause tons of acne, night sweats, jags of energy - they are awful. Lack of sleep is the worst. The good news is, my dosage is lowering every week, and will be done with them by the end of July. Thank god.

I will be on anti-seizure meds perhaps forever.

I can't drive until November or December (need to be seizure-free). This is not a side effect from meds. However not being able to drive is awful. Words cannot describe how much I can't stand to be depended on someone to drive me places.

And oh yeah - the brain radiation has left me bald again. Bald. Again. I am not doing wigs. Just head wraps. Photos to come.

Annie's Breast Cancer History Digest

For anyone who is interested in my three-year cancer adventure time-line and treatments - here is a brief recap. I still find it hard to believe what I have been through. I have said it before and I'll keep saying it - cancer sucks.

• July 2008 – Diagnosed with DCIS in left breast
• September 2008 - Left Breast Mastectomy –– Georgetown Hospital – Dr. Shawna Willey
• February 2009 – Left Silicone Implant surgery –– Georgetown Hospital – Dr. Spears, plastic surgeon.
• July 2009 – Diagnosed with metastatic cancer. Cancer spread to lymph nodes in left armpit and liver; HER2 Positive, estrogen receptive – referred to Dr. Mary Wilkinson, Fairfax, VA - oncologist
• July to October 2009 – Started IV chemotherapy – Herceptin; Taxotere; Carboplatin
• November 2009 to August 2010 – Herceptin every three weeks
• August 2010 – Lymph nodes active again – started IV Gemzar and Herceptin;
• January & March 2011 PET/CT scans indicated liver and lymph node activity decreased;
• June 11, 2011 – Had grand mal seizure while working in Orlando, Florida. Florida Hospital in Orlando performed MRI which indicated three brain lesions; Dr. Wilkinson referred me to Radiologist, Dr. Bajaj in Fairfax.
• June 15, 2011 – Met with Neurosurgeon to determine treatment plan.
• June 20, 2011 – started process of preparing for stereotactic, frameless, radiation therapy;
• June 23, 2011 -- stereotactic, frameless, radiation therapy procedure scheduled at Fairfax Hospital
• June 24, 2011 – MRI with SRS Protocol showed 4^th tumor in brain stem. Dr. Bajaj recommended whole brain radiation therapy (WBRT) instead of stereotactic radiation to treat the whole brain.
• June 27, 2011 – WBRT began - 14 treatments scheduled through July 15, 2011 at Fairfax Hospital Radiology.

Whole Brain Radiation - 14 Treatments - DONE!

On Friday, I finished my last brain radiation treatment. There were a total of 14. With all of the cancer treatments I have been through - between mastectomy, implant surgery, chemo, PET/CT scans, MRIs, core needle biopsies - I have to say that whole brain radiation has been a breeze.

The procedure involved laying on a table, strapping a form-fitting web-like mask to my face, and 30 seconds of a machine buzzing on one side of my head, then moving to the other side of my head for another 30 seconds of buzzing. My eyes are closed, and all I could see is a purple light and it smelled like something was burning. There was no pain at all. I hope that burning smell was zapping my brain tumors!

Here is a picture of my custom-fit mask. Of course they let me keep it. Pretty cool, eh?

Fairfax Hospital Radiology staff and scheduling were TOP NOTCH. I never waited more than 5 minutes to get my treatment. They paid for parking. The staff were incredibly friendly. On my last treatment, I got to literally bang a gong they keep at the front desk - a symbol of completion.

My parents picked me up every day from work, and took me to every treatment except for one (Erin took me once). I love you mom and dad, for driving me all over creation, and getting me to every appointment on time. You are incredible.

Annie's Cancer Adventure I - My First Blog

Here is the link to my first blog - for those who are curious as to the first year or so of my adventure into breast cancer.

http://anniewald.blogspot.com/

Annie's Blog #2 - The Cancer Adventure Continues

Family and friends:
Many of you followed my last blog when I started my cancer adventure just about three years ago. started this new blog to keep you informed and updated on my latest treatments, health, family happenings, etc. I hope you will read this at your leisure. I hope I can relay enough details on the science, emotion and drama that has been my life.

This photo was taken on July 9, 2011. It was the last weekend I had a full head of hair!