Great news today!

I’ll give more details with pics later but for now, we left the hospital knowing that whatever combination of defense the team and I are conducting again my cancer has been working! At least in the lungs; Whatever was left in my lungs is virtually gone (at least in the prelim report – not yet seen by a radiologist) – and what was left next to my right lung, the biggest and most dangerous one all is almost invisible!

Again, this is an initial report visible to my oncologist, and my psychotherapist, and to me, my sister, and Melissa. But I feel safe enough to say that it looks amazing to me! I am very, very, happy. We get a brain MRI next week so we are all hoping that this is all a great sign that it is working there as well.

This is encouraging that despite all the steroids that have been suppressing my my immune system, we are keeping my cancer down we are destroying whatever is left.

More details soon!

Thank you for everything!

Big breakthrough today

Our amazing friend Laurie gave us a 3 hour break Saturday afternoon. It was great fun to be alone and do what we wanted. We changed the oil, ran errands, and spent time alone, which we haven’t been able to do with the kids around!

Coffee first! At the shop I saw an older man walking out. He had a grey beard, the guy was slightly bald, and looked almost just the same as my father. Uh oh. Felt a buzz on the left side of my body. I let it go and told Melissa. I think we walked into the seizure trigger. I know I am diagnosing myself but when I see someone that looks like my Father it triggers a seizure. I had another full on convulsive seizure last week. What should I think? I have probably been carrying all this anger and hatred for this man all this time and not able to deal with it. I have noticed, which, by age 41 with three children, I still have a chance. Since the main focus of my therapy was usually about my Mother I didn’t really deal with my issues with my Father.

It’s hard for me to write this down. I’ve been in therapy for years and the breakthrough may have finally come and I’ve been able to deal with this head on whereas it may have been the major underlying issue for years. Not necessarily causing my cancer but maybe helping it by ignoring my issues with my father.

Last week I had a convulsive seizure that has turned my head inside out. First there was a loss of words and now my words have come back but sometimes opposite as what I want to say which is really hard for me, of course, hard for anyone, not just an academic issue.

Today we have a CT scan and a meeting with Cho.

What I did today

Why write such mundane stuff, you ask? Well, partially to practice writing once again. A couple of weeks ago I would not have been able to get this far without a dozen typos or frustrations. So this is partially a practice for me. You may find me repeating things at times but that’s part of the healing brain from I have been reading.

Anyway,

6am : Wake up. Wash up, light up some Triloka Ayurvedic Meditation Incense meditate with my new best friend, Bodhipaksa. He and I meet mentally every morning first thing. He is soothing, mindful, and very approachable.

6:45am: Spend time with Deepak Chopra’s Heart Sutra Meditation.

7am: Break. Kids still asleep, I make some delicious swelling-fighting green tea and sit and let it sit for about 20 minutes while I stare at this backyard. Not a bad way to spend quiet mornings.

Mornings

Mornings

8am: All hell breaks loose. Kids are up, I am up making healing, protein shakes with non-GMO Vanilla Spirutein, which includes organic blueberries, blackberries, a banana, and ground flax seed. The kids LOVE this stuff so I keep making it.

One my blog’s commentators called my efforts ‘malarkey’ against this cancer. But hey, if it empowers me and helps keep the swelling at bay, then why not give it a shot? Ultimately, the power is within me and inner circle. So I am doing what I can to remain stable or make these treatments work as much as possible. Seeing that the latest drama is related to old, dead tumors, to me, is a great sign. MDX-1106 has trained my immune system to work on most of my tumors.

On tap for today: More positive visualization, making my road bike a stationary once again, and getting back on. The more aerobic exercise I accomplish, the stronger and better I feel.

Total visits: 40,050

Another landmark! Thank you for all the visits, supportive words, positive visualization, and all around kindness. This all would have been a lot harder on me and my family without all of you. And I mean that.

Baby steps?

The Decadron is keeping all my large muscles in a state of rubberiness. My legs tends to buckle, my arms are weak. But with each day I am getting stronger and stronger. Two days ago I worked around the house, played with the kids, managed to avoid bumping into anything, and went to the famous Stratham Fair for a couple of hours:

Stratham Fair 2010

Stratham Fair 2010

Feeling better after this outing, yesterday we went on an in-town hike complete with my playing catch (something I could not do 3 weeks ago) with the kids, walked along Swazey Parkway, payed some more catch, let the kids climb our town driftwood sculpture,

Driftwood sculpture

Driftwood sculpture

got some coffee, and then retired back home to get Jack ready for his baseball game.

Little League

Little League

For me, I could not read, write, or speak a few days ago, this is a huge step forward. Means that my swelling is going down, and that the Avastin may be speeding it all along. The docs want me off the Decadron ASAP so that my immune system will mop up the remaining cancer cells. The silver lining in all this is that there is nothing new, but, old, necrotic tumors that are (for some unknown reason) causing a large amount of brain irritation. They said that I have an ‘overly sensitive brain.’ I’ll take that over new growths any day.

Avastin: Day 1 of treatment

So I woke up on the couch last Friday afternoon with wet pants and knowing where I was or what had happened. I was totally in a fog. I got up, walked around, found my two girls halfway down the driveway, confused as to what happened. I asked what happened and they walked up to to me and my two year old said she saw ‘daddy shaking and falled down.’ She acted it out. I had a seizure. I started to wake up, fumbled for my phone, called the first number I saw, my sister Lisa, and asked her to tell me what had happened.

She lives in NYC, so that would be pointless. She told me to take my meds, call Melissa, who was on way back from work, who she then called a couple of friends to stay with me till she got back from work. We were both scared about leaving our daughters alone. Not to mention, how sad it was to know that they had just witnessed my strong daddy shake, fall, hit his head on a large planter and then wander inside clueless as to what was occurring.

Friends came, Melissa and my son Jack were with them and the friends left soon after. Obviously, the brain thing is happening again. Melissa called Dr. Wong and he told her to give me more steroids and go on on Monday for my first Avastin treatment, which works on brain mets, and would also work on swelling and my two remaining lung mets. All small.

My sister and her family came up to help while we were dealing with all the medical nonsense. They showed up and were a huge help while Melissa and I drove to Boston for my first Avastin injection. They were also a huge help with the kids and around the house.

Melissa, my sister, and I drove down on Monday to Beth Israel for my brain MRI and Avastin injection. Here is the latest scan:

7.20.MRI (Right side swelling)

7.20.MRI (Right side swelling)

No, no new tumors, just an old, smaller tumor causing a huge swelling situation that is affecting that part of my brain. The Avastin should attack the old tumors, the tiny one on the left side, and I should be better in a couple weeks. I already feel better after one treatment and I can read and type again! And speak coherently. So we are all hopeful that the MDX-1106 has weakened the remaining tumors and we’ll all be happier next scan. Fact is, I truly believe that my two months of meditation, eating better, positive visualization and energy all helped keep this cancer at bay. Nothing seems to have grown, no new ones, just more swelling which could be gone by next scan.

We are all a bit more scared this time around, only because Melissa may be handling more than she could handle at least for a few months. She would have drive all the time, do all the shopping, deal with the kids all alone all the time, basically do everything all of us all the time. We would need babysitters since our family is NYC and can’t be around. So we have an offer on the table: Move back to Queens and live near them so if this crap happens again, they are close to help, time in need, and vice versa. It would be a tight community between my two sisters, my parents, and us. In a pinch we could rely on any of them and get help anytime without worry. It’s a serious consideration. We are thinking yes.

I can get the Avastin treatment at any hospital down there, see my doctors in Boston once a month, and I would still get the family and friend support I want and need down in NYC. Sure, the living would be tighter, but we all noticed how much better I do after a visit with the family. We’re leaning towards going. Not sure yet.

I get another injection in two weeks. No side effects yet, by the way from my first treatment. A little fatigue, but that’s not a big deal.

Some positive news to focus on

Radiologists saw in the penultimate scan what they thought were metastatic tumors in my one of my iliac bones. I said little about it all since Cho was not convinced back in April that this was the case. And, he was right. Here is the latest finding:

BONE WINDOWS: Again seen are unchanged lucent lesions within the right iliac bone, likely fibrous dysplasia, and of the left femoral head, likely subchondral cysts. No other bony lesions are identified. Patient is status post sternotomy with midline intact sternotomy wires.

Cho: So it’s possible that the reading of femoral lesions might have been an over-read in the past if they are now thinking they are subchondral cysts. Good news.

—–
Funny how good news nowadays revolves around scans and their findings. Life was so different a few years ago.

I am going into Monday’s appointments with some ease. If it had indeed spread to my bones I would have been very worried. But, the tongue met victory and the small size of the new ones gives me more hope that my immune system is indeed doing a decent job.