Progression Of An Aggresive Glioblastoma Brain Tumor

I'm backing up a few weeks from my last post. On September 30th Mom had a biopsy of her tumor in Seattle. She came through the surgery well and we were able to bring her back to her home on October 2nd. We were holding on to hope that her tumor pathology would show that it was lymphoma - a potentially treatable cancer - but we had to wait for a week for the results. What we didn't imagine was that Mom would decline so quickly over the next two days that when Mom was hospitalized on October 4th, she was sleeping close to 20 hours a day. Her decline was alarming so my dad and Mark took her to the emergency room, where they preformed another CAT scan and admitted her. She received IV steroids and Manitol, sodium/potassium to help her body pull fluid back in to her vascular system and relieve the pressure in her head. This gave us 6 wonderful days with Mom. She was vibrant and talkative. Cheerfully posing for pictures and welcoming the many family members and friends that visited her that week. When I left on Saturday morning, I knew that we were enjoying borrowed time. The steroids were making her unnaturally energized and it could not be sustained forever. When I arrived back in Kalispell 4 days later, the change in Mom was dramatic. She smiled and welcomed John and I but her eyes spoke of her exhaustion and growing limits of her ability to express herself in words. I noticed her right hand cramping up and a slight slur in her words. During physical therapy, Mary Ann asked her the color of each plastic cone, She could not verbalize any. When she was asked to grab a cone with her left hand, she did well, she was then to transfer the cone to her right hand and stack each one. This was not possible for Mom to do on her own. We knew of her right hand side neglect, or brain caused blindness. This was part of the problem. She walked back to her room with a walker and did quite well. Moved at a pretty good pace. The following day during physical therapy her right leg would not follow her brain’s direction to move. Dad noticed that if she looked at her right foot that she could move it. As we helped her move forward using parallel boards to hold on to, she was not able to release her right had upon direction of the therapist. I had to pull it off and move it forward with each step. She still had a very strong grip. She tried so hard! Her concentration/confusion on Mary Ann’s orders was heartbreaking. She wanted so badly to do well and please Mary Ann.

Musings From A Broken Heart

I believe that crying makes room for positive thoughts. And, that animals detect illness in the people they love. I'm writing this through tears, bleary eyed, in the middle of our family nightmare.
I think that Punkin knew what was wrong. Mom and Dad's beloved dog, Punkin, staked his territory on Mom's lap any time she sat down. And he stayed with her, sniffing her breath when she spoke, not wanting to leave her side. I remember Dad commenting on his behavior in early September.
At that time, we as a family were reeling. Mom seemed to have lost her short term memory. A couple of weeks earlier, her visit to the emergency room at Kalispell Regional Hospital, via ambulance, took us all by surprise. Symptoms of stroke alarmed a chiropractor, who sent mom to a clinic. A high blood pressure reading along with upper back pain provoked an alarmed physician assistant to call an ambulance in fear of a heart event. Tests were run, and nothing was found to warrant admission to the hospital and Mom was sent home.
Around this time, my sister Anne and I traded worried phone calls about Mom repeating the same idea during casual conversation, over and over and over, only seconds apart. I tried to correct Mom about her disturbing concern of relatives from Illinois not having input on the tile store that Mom and Dad own, when the real concern was that they have input on the family lake property. I gently explained that she was confusing the two entirely different subjects, but she was adamant and did not understand the distinction.
At the time Mom was convinced that her trip to the emergency room, and day long series of 'unnecessary tests', were the result of medicine gone wrong. She thought that the physician assistant overreacted. She wanted to be examined anew. By a new doctor who would look at her back pain for what it was was. Start over. But I heard this concern at least 10 times one evening. I feared that she was in early stage Alzheimers disease, of which her brother Harland, suffers today. Or possibly a mini stroke was causing her symptoms.
My parents received the news of Mom's brain tumor on the day of their 50th wedding Anniversary, September 22nd, 2010. The night prior, they were told to come to Dr. Robinson’s office for a very important 9 am meeting. My brother Mark went to the Dr office with my parents and was a rock for them while they heard the most devastating news possible. A 5.5 cm tumor located in the back left side of Mom's head had been found on the MRI taken the day before.
Two days ago, while holding Punkin on a lease with one hand and helping my Mom who was anguishing with pain with my other hand, Punkin began wheezing. I couldn't help them both so I held Mom's head with my hands and whispered and cried "I'm so sorry. Its going to be okay." And she kissed my cheek. But she didn't cry.

What You Don't Miss

Just read this amazing post by Robert Ebert. It hit home for me. And its true, you can accept losing things that you enjoy and take for granted. Because when you become accustomed to a new reality you see all that remains.

http://blogs.suntimes.com/ebert/2010/01/nil_by_mouth.html

Time for Fosamax

My doctor prescribed Fosamax at my recent appointment.

Results of a new analysis of data from the Women's Health Initiative (WHI) observational study showed that women who used bisphosphonates, which are commonly prescribed bone-strengthening pills, had significantly fewer invasive breast cancers than women who did not use bisphosphonates.

It appeared to make bone less hospitable to breast cancer recurrence.

I need to take care of some dental work first however. Bisphosphonates are associated with osteonecrosis of the jaw (death of the jaw bone) if the jaw bone is exposed during a tooth extraction or root canal. I have a root canal in my near future. Yay

Impermanence

Having had cancer affects my decisions. The realization that all things that we have and all our experiences are not permanent, has me making decisions quite different than before cancer.

The idea of impermanence, which is an important Buddist concept, was difficult to accept at first. Boy I fought it hard. Some days I still do. Its natural to pretend that things will continue as they are. Or that unwanted changes are far in the future.

But after two years of wrestling with fear and reconciling my hard held beliefs with what is real, I've accepted the impermanence of life.

Rather than have a root canal to save a tooth, I did a cost-benefit analysis and along with recognition that my body is not meant to last forever, I had it pulled.

I get frustrated and consider taking it out on others but most of the time I remember that moments with my family and friends are limited.

I am fortunate, because I am not putting things off these days. There is no guarantee of next year. I don't believe that cancer is progressing in my body. I do believe that I may not have as much time as I need.

It's the truth. For everyone.

Wake up. Don't wait. Enjoy and appreciate each moment as best you can.

Check up - Its all good

Had a checkup today. Exam went well. Tumor markers were slightly elevated but nothing of concern. Went for a chest xray afterwards. I'm confident it'll be clear. I'll have another bone scan in 3 months. Dr. Schmidt thinks its a good idea to stay aggressive with scans and exams for another 2 years. I'm almost to 2 years since diagnosis. 50% of recurrences happen in the first 3 years and each year that I am clean after that my risk of recurrence drops by 2%. It feels great to have it over with for another 3 months.

New Drug for Fighting BRCA1/2 Tumors!

Check out this article on a new drug called Olaparib that is especially promising for the treatment of cancer for BRCA 1 and 2 gene mutation carriers.

It was a small Phase 1 trial so its early in the process for making this drug available to treat cancer (outside of patients being treated in clinical trials). Its taken orally and has few side effects because it only affects cancerous cells, leaving normal cells alone.

Freaking Beautiful!

Bone Scan Results

My bone scan came back negative for cancer. This is a huge relief for me. Now I think of my rib pain as a result of surgery rather than wondering if it is a cause for alarm. One bit of not-so-good news is that I have bone degeration in my cervical spine since my last bone scan 18 months ago. Studies show that women taking Femara lose bone density at twice the rate of other women. I take extra calcium for this. My sister brought up a good point and that is that it would be a good ideal for me to start lifting weights to protect my bones. I agree and will look into getting some to use here at home.

Bone Scan Wednesday

This waiting is a test of my power of thought avoidance. No sense in thinking too much. But a clear scan would be so freaking great. My oncologist said that the doubling rate of cancer cells with my pathology is 30 days. So if there are any in my bones after a 12 month period the test would pick them up. I hope I don't have to wait over the weekend. I'm so glad we are busy with Tanner's french foreign exchange student here. I'm averaging three trips a day into town to transport kids so there's not much time for sitting around and stewing.

All Clear

12 months since chemo and my cancer markers and chest xray look good. My oncologist is ordering a bone scan since I continue to have rib pain on my left hand (cancer) side. The chest xray cannot pick up an anterior rib tumor and tumor markers have a 20% false negative rate. Thus, out of a abundance of caution I'll have a bone scan. Its been 18 months since my original bone scan. I will feel a good deal of comfort having a clean bone scan result.

I am relieved. Feeling good tonight.

Checkup Next Week

I rescheduled my checkup to Monday the 20th because I had accidently scheduled it for the same time as a class I am taking. I went and got my xray done yesterday however. I should hear about it tomorrow, or perhaps not till monday. Will let you know as soon as I hear.

Meeting Others Like Me

I went to my first support group last thursday. It's held at at my Oncology clinic and was attended by 3 other women. First of all I thank my clinic for doing this. They have two therapists there to guide the meetings. So there is cost for them. And of course they don't charge people to attend.
I suppress fear of recurrence as a matter of habit now. Except for when I break down. I suppose that happens every couple of months. My husband called around to find cancer support groups a few weeks ago and thats how I ended up at my first meeting.
Upon entering the room, which was relatively small, cozy, and very comfortable, I knew I was the new participant. The therapists were very kind and accomodating. They reviewed the 'rules' of the group, such as privacy and acceptance. Looking around the room I felt nervous, expecting that I'd need to introduce myself. When I looked at the other women I naturally tried to figure out their story. It was easy with one gal who was wearing a long blonde wig. No matter how good the wig or makeup you can tell when someone is still in chemo. She was the funniest and liveliest of the group.
I remember being that way. Trying to impress people that I was different than the typical 60-someting breast cancer patient. Not a victim. Not suffering and still vivacious. She put on a very good act. She has one chemo to go. I learned later that her breast cancer is not contained in her breasts. Ugh. She is about my age. Had a bilateral mastectomy, as I did, and is in chemical menopause. Her enthusiasm, while truely admirable and understandable, pierced my heart. She was so happy that I was there. We have alot in common.
I was asked to introduce myself. The first words out of my mouth were "I don't know if I can do this". Then I began crying. Being in a room with such kind people, some of whom understand on a level that no one else I know understands, overhelmed me. Jesus. I couldn't even say my name. I just cried.
They were patient though and I walked across the room to get a tissue and sat back down and started rambling. Started with my diagnosis. Where else would you start? Nothing before seemed important at the moment. I felt the needed to prove that I belonged. Yep, I had the qualification. The cancer passport. The upcoming 3 month checkup. Everyone nods. Everyone knows.
I'm going back tomorrow for another meeting. I have a checkup next Wednesday. My rib hurts. Same place as last time. Its not cancer. It just reminds me every few hours of the possibility.

Cancer Markers Go Down!

I got good news from my oncologist. Tumor marker tests came back with levels less than my levels from 3 months ago. My CEA (Carcinoembryonic Antigen) level was at 5 and my CA 27-29 was at 15.

CA 27.29 is a protein that is normally produced by breast cells. In people with breast cancer, the CA 27-29 level can increase. The protein amount can rise with breast cancer tumor growth and fall with treatment. Normal range is 0 - 38.6.

The carcinoembryonic antigen is a protein that may be present in people with cancer, including breast cancer. The CEA Test measures the amount of this protein in your blood. CEA is normally detected in healthy adults. An adult non-smoker should be under 2.5 and a smoker should be under 5. I'm not a smoker. But if my oncologist is not worried my level being at 5 then then I'm not worried about it.

My physical exam was perfect and chest x-ray was clear.

So I plan to keep doing things that I believe help stave off cancer recurrence. Eating mostly greens, a wide range of vegetables, whole grains, nuts, berries, red wine, green tea, dark chocolate. Limiting meat consumption to salmon & scallops a few times a week. Limit dairy products to cheese (organic when possible) and eggs (from free range chickens with no added hormones), on occasion. Exercising for 45 mins every other day. My exercise quantity will increase as the weather gets warmer and I can resume running outside.

I also take Femara 2.5 mg, a multi-vitamin, 2000 IU's Vitamin D, Vitamin B12, Fish oil and Flax oil capsules daily and calcium 3 times daily.

I am taking a class at the University of Montana. Its going to be over my head but I expect to learn alot from it regardless. Its called "Advanced Nutrition for Chronic Disease". We'll focus on how nutrition affects the diseases Diabetes and Cancer.

I can't wait to report back here with recent study findings.

Shaky

As the day of my checkup gets closer my body does funny things. I can keep the part of my brain that is in charge of logic pretty well under control. Only brief waves of worry piggy-back on my thoughts. My body doesn't listen to logic though, evidentally. It has its own way of worrying. My throat is tight and I notice every couple hours that my stomach is clenched like I'm preparing for a punch.

My fight-or-flight instinct is on high alert making panic a buddy of mine today. When I screw something up I panic inside. I wonder what I look like from the outside. Then I go into pandering mode. I want to make things better and end up feeling embarrassed of myself.

I am guessing though that everybody feels this at times. So I don't think I'm deficient because of my reactions. I think I would benefit from a support group though.

Checkup Time Again

Crap, 3 months goes by quickly. I haven't made my January checkup appt yet. Will get around to it soon.

After being obsessive with anti-cancer foods for several months I've been sliding toward a more normal American diet lately. Eating some sugar every day. Not a lot compared to my previous, pre-cancer days. Not eating anti-oxidant rich veggies every meal. Just a couple times per day. I'm keeping up on my vitamins and exercise pretty well. I actually ate some red meat the other night. Just a little bit.

Fear of cancer recurrence has taken a back seat to feeling shitty about my performance at work. I'm back to seeing a psychologist that I used to see, about this. I got off to a bad start at my job, because I started and was trained around the time of my last of 6 chemo treatments. The training I promptly forgot. My memory is getting better though, I think.

So I'll go in and get exams and tests and xrays and report back. I'd be shocked if they find anything bad.

Lucky Me

Me and my sister Christmas Eve. All is well.

Insurance Issue

I've been trying to get Blue Cross Blue Shield to pay for portion of my surgery bill from one year ago. We've had to pay the surgeon for this portion out of our pocket to keep it from going to collections. The deal is, I elected to have my ovaries taken out at the same time as my mastectomies because I'm BRCA2 positive with BRCA2 comes a high risk of ovarian cancer.

Got the verdict from BCBS yesterday and its a big fat no. The oophorectomy was elective. I really don't think it was elective. I bet 100% of oncologists would recommend it for a BRCA patient. You'd think BCBS would be interested in paying for preventative procedures that hopefully avoid further cost to them, in the form of astronomically expensive chemo treatments.

I'm not ready to give up yet however. There is a website called FORCE that deals specifically with BRCA gene mutation issues. Maybe someone there has tried to influence an insurance company to pay for a claim they initally deny.

Feeling Thankful

Feeling extra thankful this year for a happy & active family and for my continued good health and growing hair. Check out the collages below of Tanner, Quinn and Me & John. We made them using a cool auto-collage tool from Microsoft. The tool is still in Beta but John found it and here are the results.

2-Fer

I got a surprise moments before my colonoscopy was to begin yesterday. I was informed that I was also going to have a esophagogastroduodenoscopy! I initially said no, thinking it was a mistake. But the orders from my oncologist clearly stated that I was going to get scoped from both ends!

Backing up.... I should explain that prepping for the colonoscopy was not a big deal. Had to drink a gallon of slightly sweet, slightly salty solution the afternoon prior to my appointment. It made me feel a little naseous and really bloated until the solution did the trick and emptied me out. The hardest part was dealing with the hunger pangs. I had several eating dreams that night.

The next morning I took .5 mg of clonazepam (for anxiety) and checked in to the hospital at 11:30. By 1:30 the I.V. was in (on the first try yay!) and I was signing release forms and being wheeled in to the procedure room. Once again I was surprised by how cold they keep operating rooms.

I briefly met the doctor who asked me how I was feeling. I said fine and to please sedate me heavily. I did not want to know what was happening.

Shortly later I saw him insert a syringe into my I.V. and I began to feel dizzy and faint. He asked me to roll onto my left hand side. I remember nothing of the scope being put down my throat. However I do remember being told twice to breathe. A pharmacist that I work with, who spent some time as a tech for the procedure, said that sometimes a patient gets so relaxed they 'forget' to breathe and need to be reminded. I also remember complaining four times about pain during the colonoscopy. It felt kindof like labor pains and I think I yelled ow 4 times.

Next thing I knew I was in recovery waking up and wanting very badly to go back to sleep. I did close my eyes and try to go back to sleep a couple times but finally gave in to the nurse who kept bothering me by removing my I.V. Pretty soon John came in and I got myself dressed and rode the wheel chair up to the front door of the hospital.

John and I were really hungry (John fasted for a day in solidarity with me) so we headed to Johnny Carinos. I ordered some food but could only manage a few bites. I was just too wiped out and went out to the car to take a nap in the back seat while John hurriedly ate. We came home and I crashed for a good part of the night on the couch.

All & all it was a very relaxing day. And the preliminary report from the nurse in the recovery room is that both scopes found no problems. YAY! It sounded like one biopsy was taken but I'm not sure about that. I should hear from my oncologist about the final report within a week or so.

Not sure what, if anything, she'll want to do to look for another cause for my low iron level. I'll have another checkup with a CBC in January. Until then I'll continue to take an iron supplement daily.

Thanks for checking in on me.

One Year Since Cancer Took Over

One year ago I was petrified. Not really from the darn good chance that I had cancer. I had had a suspicious mammogram which called for a followup mammogram at the hospital. That second mammogram caused a stir. I was taken immediately for an ultrasound. Then scheduled for biopsies. One year ago today I was much more scared of the biopsies than of the thought that I might have cancer.

What I couldn't imagine then, after being diagnosed, was that FIVE months later I would be FINISHED with surgery and chemo. Those five months however were at times horrific and grueling. I'm referring to emotionally horrific and grueling. The physical suffering was secondary. Thats how I remember it now.

Whats on my mind now? I hate my hair.

I had my first post-chemo haircut a couple weeks ago. Not a whole lot she could do but trim the sides and back to make it look somewhat like a style someone might choose.

I should be damn happy to have hair. I need to be slapped back to April when I had no hair. What happened to my gratitude?

In many ways I've moved on.