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

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

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

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

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)

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.

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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.

The many faces of treatment and Decadron

When I first started this journey, I was an avid bicyclist who rode 22 miles a day just to commute to work. I lived in town so I could walk pretty much anywhere I needed to go. I was in shape, looked and felt good, and then the diagnosis came. And I swear, within a few weeks after the treatments began my body started to really fall apart. I started to believe that the treatment may be worse than the actual cancer for me at this point. I have 3 small tumors but it’s the steroid treatment that is slowly killing my body!

I looked at myself in the mirror this morning and thought “Holy shit! Who is this guy?” I have gained so much weight on the dreaded Decadron, have managed very little outdoor activity due to muscle weakness it creates, and have one of the steroid’s standards side-effects: Moonface. So I thought I would put I few pics of this whole process together for a short post just to remember who I am at times. But also to motivate me to keep meditating and to start working on a stationary bike once again.

Vanity? You bet. But that’s all part in getting better.

Jan 09 - Waiting for my first brain surgery

Jan 09 - A few days after my first brain surgery, getting a last shave to even things out

April 09 - two surgeries later, waiting for HDIL2 treatment

April 09 - two surgeries later, waiting for HDIL2 treatment

September 2009 - Dr. Tess doing the post HDIL2-exam

Nov. 2009 - My first MDX-1106 treatment

June 2010 - Decadron face - after almost 5 months of the steroid

I knew something was wrong when…

4 days after I cogently played baseball in the backyard with the kids I couldn’t find words. I had sentences clear in my head, but they came out in reverse when I spoke: “Tony Soprano” went something like this “Ynot OnarpoS”. The funny thing is that the letters, as I visualized them, appeared in reverse as well. But yes, a few days earlier, after playing ball and being able to pitch and catch with no issues (remember, I was tapering the Decadron and was a mess just before that) and even remarked at how well I had been doing. Then it happened.

Four days before the minor seizure

I started speaking in tongues after the taper went from 2mg to 1mg. It was total backwards gibberish that made sense in my head but could be entertaining as well: “I went to the market” came out as “tekram eht ot tnew I” but it seemed perfectly fine to me. Melissa asked me some basic questions like “who is president?” and “where do we live?” and I had the answers but could not verbalize them at all, so I sat there quietly, annoyed.

She called Dr. Wong, my neuro-oncologist and he attributed it to the taper withdrawal and my brain swelling once again. Maybe we had tapered too quickly. So he had me take 4mg again and call him in the AM with any symptoms. I was still out of it in the morning and kept seeing visuals of animals in the room (palinopsia) wolves and cats in particular. I was still speaking in backwards tongue so Melissa called and he had us come down to Boston for examination.

I don’t remember much from the holiday weekend, but thankfully my sisters had come up for the weekend and we were able to leave and come down to the city for examination and would be able to join them by the afternoon for the family barbecue. We got to the ER and they wheeled me in and did a CT scan, which is not the best but the quickest way to have a look and see how much swelling there actually was.

There indeed was swelling from one of the treated mets. I was informed that swelling could persist from dead mets for up to a year, so theoretically I could be on Decadron on a low dosage for another year! No. No way. Dealing with the cancer without this steroid is what we all want. The steroid is holding my immune system hostage and it’s taken a on my toll body, my psyche, and is allowing the cancer to keep moving.

July 2nd scan

And I know this because we also found out that a) there was indeed a new, asymptomatic met in my brain (4mm – see the difference between July and May – two have been killed off, one new one has appeared) and sadly, a new met in each lung (also under 4mm) since the last scans. But the others that were there seem to have been killed off and have disappeared. I know, I know, these are small but MDX is taking me off the trial for now and we are looking at other treatments. Avastin is the lead right now since it crosses the blood barrier, works effectively on lung mets, and also since MY TONGUE MET HAS BEEN KILLED.

I know that the tongue met was kinda funny, but its death shows that MDX worked and that my immune system recognized cancer cells and killed them. So what we are hoping for is that I do the Avastin treatment, all my mets respond, and that MDX is flexible enough to allow me back on the trial since I had such a dramatic response.

I’ll know more next week after my appointments.

The docs are all frustrated with my immune system being so weakened by Decadron since I was on the road to NED. So they will be aggressive with the treatments and try to get me back on MDX-1106 once again.

Next steps: a) Cyberknife the new brain met b) Get the Avastin for brain swelling, any hidden brain mets c) Hope the Avastin kills the two lung mets d) get back on the MDX-1106 trial and finally get off the Decadron once and for all.

I don’t hate my cancer but I am ready to kill off this damned steroid.

Thank you for all the kind words and support. They mean much to me.

PS – Apologies if this post is flaky in spots– I just started typing and writing a couple of days ago. This swelling has pushed on a place where interpretation of language is affected. Also, the palinopsia… but on the bright side it only took me two hours to make this entry 😉 Oh, and I can’t see fully yet out of my right eye. I see two thirds of this sentence, for example.