The Start   September 29th, 2011

From Linda…

The day began early at 8am with a CT scan to measure and check the growth of his tumors. At this point, they told us that the target start time for chemo would be 4pm.

The powers that be decided a MRI would be a good followup to get a more exact measure and Jake was on call for a time slot. About 2pm we got the COA or Certificate of Approval that Jake T cells in the lab were a 100% go for the start. Yeah! Woohoo! Yippee! This meant that the pharmacy could start making Jake’s personal chemo cocktail.

Jake arrived for his MRI at 3pm to be told it had broken down, but they got it up and running to get him in by 4pm and out about 5pm. Finally, we were just waiting for the chemo.  At 7:30pm, Jake officially began the chemotherapy portion of his treatment. Treatment has begun!

A toast to N.E.D.

and a mantra from the chaplain

 

All will be well
And
All will be well
And
All manner of things
Will be well

 

Thanks to inspiration from a discussion with my friend Ellen Horne at WNYC, I’ve decided to try to complement my written blog with a video blog. Should you find yourself bored by reading my missives, an abridged version of this written post can be found in the video blog, accessible below.

I just returned from several days in New York City, where we dined very well at mostly excellent restaurants, explored a couple of museums, attended a wonderful musical, and met up with friends we hadn’t seen in a while (and missed several others, unfortunately).

It’s not clear that the trip would have been as enjoyable had I not had my Sylatron immunotherapy treatment for my melanoma cancer suspended due to an alarmingly low white blood cell count (see the previous post). I also took the step last Friday to try acupuncture as a way to reduce both the fatigue and appetite loss the Sylatron had induced. I believe the combination of the acupuncture and the lack of a fresh dose of the drug last week allowed me to eat my way through my New York stay.

At the same time, I found that my energy reserves were still not the best, and that I required daily naps. The realization that I might need regular blood tests during the course of my many month or even multi-year treatment with Sylatron, along with the inherent side effect of fatigue, led me to another conclusion, supported by my doctor. Namely, that my plans for an expansive three month trip to Asia and Australia this autumn would not be really viable. So we’ve unfortunately had to cancel our planned tour to Vietnam and Cambodia in November, and stopped all of the related trip planning to the other side of the world. All to be revisited at some future date, hopefully.

This decision goes deeper than might be apparent, as it is a sign of things to come, namely the inability to plan grand and lengthy things because there is so much uncertainty, even in small things, beyond a certain distance in time.

Mark Beckelman, the recently deceased mentor and friend I mentioned in my prior post who gave me hope when things seemed bleakest after my diagnosis, shared with me that he was happiest when he was living in the moment and living his life. I have come to learn that “living in the moment”, as Mark described it, is pretty much a necessity when you have a life threatening disease, especially where the treatment is fluid, affected by physiological factors as well as chance. Planning for more than three months into the future probably falls outside of “living in the moment”, so, at least for now, I will try to limit my planning to the nearer term, and in smaller chunks that can be more realistically achieved even when other factors change.

On the bright side, as we have proven to ourselves with this week’s NYC trip, I can travel closer by (this hemisphere), and will therefore, hopefully, be taking short trips around North America, including a trip to the San Francisco area in late October which will include (fingers crossed) a dinner at Thomas Keller’s The French Laundry, and visits with many friends we’ve not seen in a long time. My radiation treatment should be over by then (more fingers crossed), and hopefully I will fall into a more manageable routine with less external variability.

With respect to my treatment, I went in for a blood test today, and my white blood cell count had returned to a low but manageable 2700 cells per cubic milliliter (up from 1900 early last week), and my oncologist said I should resume the full induction dose today, not a reduced dose as I was previously told. I will get tested again in about 11 days, as part of a meeting I have scheduled with him the afternoon of August 1st.

At that meeting we will also go over the results of my next set of scans, scheduled for next Wednesday, which will hopefully show that I have not had any visible spread of my cancer to the rest of my body.

These scans, which will take place every three months for the next couple of years after detection, and then get spaced out to being semi-annual or even less frequent over time, are an event of high anxiety for every cancer patient I have spoken to or whose words I have read. They serve as a double edged sword, as the hope is that the scans will be clean, reaffirming that the cancer treatment has worked (and is working), but at the same time they could be the harbinger of really bad news, namely that visible tumors have appeared.

This will be my second set of scans since my diagnosis, and I’m anxious and hopeful that I will hear that my scans are clean (again) when I get the results back from my oncologist on August 1st.

I also meet with my radiologist next week to start planning my radiation treatment for trying to kill any cancer cells that might remain in the vicinity of my excised lymph nodes in my right groin. Assuming nothing unexpected happens between now and early August (like bad scans), this will result in more scans to create a simulation of my treatment areas as well as a body mold to hold me firmly in place while a computer controlled radiation emitter accurately zaps only those parts of me that need the treatment.

More on that in my next post, as I learn about the process.

 

As I write this, I’m sitting in our rental car heading south from New Hampshire to Chelsea, Massachusetts. My ever patient and supportive wife Linda is driving as the skin graft on my thigh is still too delicate to allow me to use the gas pedal and brake adequately.

Our destination this morning is the Massachusetts General Hospital imaging facility, where I am schedule to get a brain MRI scan, and a chest and pelvic CT scan – one right after the other. The purpose of these scans is to determine whether the cancer that was found in the lymph node that was removed a couple of weeks ago has metastatisized. In plain language, the scans might help determine whether there is detectable cancer in any of my organs.

Sign on the 9th floor of the Massachusetts General Hospital Yawkey Center - 9E is the place for me

Sign on the 9th floor of the Massachusetts General Hospital Yawkey Center - 9E is the place for me

 

The oncological surgeon we met with a couple of days ago explained that these sorts of scans have pros and cons. The pro being, of course, that it could detect cancer in a non-invasive manner. I thought a con might have been the radiation or electro-magnetic effects, but as he indicated, the cons are mostly human in nature. Statistically (and in cancer detection and care, statistics are the guiding principal as I’m learning), he said, only 3% of scans actually turn up cancer in the scans, but in around a third of scans the radiologist might see something questionable. That in turn can cause anxiety in the cancer patients when the doctor reports back that he or she thinks the scans are okay, but is not entirely sure. It then becomes an issue of trust between the patient and the medical care givers of whether some possible anamoly detected in the scans needs to be investigated further or not. However, that 3% positive detection rate is still worth it, and as it was pointed out to us, the scans are a standard diagnostic after the next surgery I’m scheduled to have in order to help determine what adjuvant (additional) treatment I would be started on (with the best guess being a long regimen of interferon).

The surgery I’m schedule for on May 9th is called a lymphadenectomy, and its purpose is to remove all the lymph nodes in the vicinity of my right groin, where the cancer-containing lymph node was removed during my biopsy. This is a surgical attempt to eradicate the cancer before it has a chance to spread, as it is believed that the lymph nodes act as a temporary road block against cancer getting into the rest of the body. At the same time all of the removed lymph nodes are biopsied as well, and according to the doctor, there is a 7-22% chance, statisically, given my biopsy results, that more cancer will be found in some of the removed lymph nodes. Either way the surgery would be followed by the adjuvant treatment I mentioned above, as an additional safety measure to attempt to help my body eradicate any cancer still in my body.

However, that might also all be moot if the scans I am getting today do detect metastasis. In the unlikely event that happens, then my surgery might well be cancelled, as removing all the lymph nodes in my right groin would no longer be necessary to prevent the spread of cancer, and another treatment path would need to be determined.

I have been learning over the last couple of weeks that cancer detection and treatment is still a very hit-or-miss sort of thing. There appears to be great understanding what cancer is (basically, cells that for some reason start replicating in an uncontrolled fashion), but beyond that, things get a bit foggy. There are apparently a number of different cancers which in turn respond (or don’t) to various treatments. My form of cancer, melanoma, is one of the ones for which the treatment options are pretty limited. I’ve been told that chemotherapy, which is a treatment that many people associate with more common forms of cancer, is not particularly effective with melanoma. Needless to say, I am slowly ramping up to start my own research into melanoma so I can be better prepared to understand my options at the crucial points in my treatment.

The lack of complete understanding of how to eliminate cancer, or even detect it, is part of what makes cancer such a terrifying disease. We expect doctors to have all the answers, but in the case of cancer what they really contribute is more knowledge and experience, and thus provide the best statistical chance for survival. It then becomes a matter of trust, and a matter of hope that your trust is well placed. That said, Linda and I feel very good about our medical team so far, but blind trust and faith is not our way, so we will be working to improve our knowledge as much as possible so that I can be a fully informed patient.

One of the two barium sulfate containers I need to drink before my CT scan

One of the two barium sulfate containers I need to drink before my CT scan

As I submit this post, I have just completed my brain MRI – 45 minutes in a claustrophobic tube where I was not allowed to move my head at all, but given time to occasionally clear my throat. I’m now downing two containers of a barium sulfate tracer solution that will assist in analyzing my upcoming chest and pelvic CT scan.

 

The scan test results, or, more accurately, the analysis of the scans, should be completed no later than Monday. Until then it’s a matter of waiting anxiously.

Adding to the anxiety is that we found a nice short-term rental apartment just minutes from Massachusetts General Hospital, but are now waiting for our rental application to be approved. We should know about that by Monday as well. Having the apartment is important because if things go as planned, I will have regular appointments at the hospital starting at the surgical date going forward, and if I am put on interferon, I will be needing daily intravenous applications for the first month of treatments followed by self-injections three times a week for a long time thereafter.

Wish us luck.