New Regimen

I apologize for the delay in posting this week. I originally wanted to wait to fill you all in on our appointment with the Herbalist this past Tuesday. The problem is that he gave us some pretty extensive stuff to incorporate into our daily routine leaving little time for weekday evening blogging. So rather than leaving you completely in the dark all week, I thought I would give you all the quick scoop to tide you over until Sunday night.

Kristine's symptoms continue to cause more concern. Her cough is more frequent than in previous weeks and she has started to cough up small amounts of blood again. Her right shoulder and right side of her neck is in pain as the lymph nodes swell with tumor growth -- the lump on her shoulder sticking out about an inch high and measuring about 2 inches wide. She has developed painful and acute headaches on the right side of her head that continue on and off throughout the day. We do not have the scan results back from the CT scan of her neck and shoulder yet. They will provide us with a better picture of how extensive the disease has spread into her lymph nodes. We are planning to meet with Dr. Staddon to discuss this new headache development and the potential options we have as Kristine's breath becomes more and more restricted.

Our trip to the Herbalist was encouraging. Although, as I mentioned the regimen he has Kristine on is quite extensive. It will likely take us a few days to fully work into our daily routine. I will give more detail this Sunday, but let's just say I feel a little like a wizard in training at Hogwart's mixing potions made of rare herbs and roots. Though I frankly don't care if it's made out of toad's wart if it works.

Thanks for your patience.

Closed Doors, Open Doors

Kristine had to deal with another piece of disappointing and frustrating news this week. The rehabilitation center that she has been attending for physical and occupational therapy on Tuesdays, Thursdays and Fridays informed her that her last session will be next Friday, May 1. They explained that she's not progressing enough to qualify for insurance coverage at this point. She still has several sessions left under our coverage for this year, but the sessions will only be approved by our insurance provider if she is showing continued signs of progress. Kristine's therapists told her that if she's able to strengthen her leg and/or arm muscles during her time off there is a chance that she could come back in a few months to continue therapy.

When Kristine was first paralyzed the neurosurgeon told her that whatever movement she would regain would likely occur within the first six months. Kristine has carried this statistic around with her since her brain surgery last October (about 6 months ago). So, of course, when the news came that she was no longer progressing physically, it hit her particularly hard. For Kristine it was like the window of opportunity had passed her by and her hopes of regaining mobility and independence disappeared along with it. Kristine will still attend aqua therapy two days a week to keep in shape and continue to work toward improving her physical condition.


After last week, we felt like we were out of options in Kristine's cancer fight. While we are still exploring conventional options like surgery, the available options are nothing more than a way to buy time. However, an interesting potential lead did surface though in the last few days. A credible customer of my father's gave him some information about an Herbalist in Ohio that helped a member of her family resolve his cancer -- he is still cancer free today after several years in remission.

Needless to say we have heard a lot of these claims before and have remained very skeptical. However, we are willing to take desperate measures these days, so we gave the man a call. It so happens that he'll be about an hour and a half outside of Philadelphia next week meeting with some other individuals. He put us in contact with a local man and his wife who are helping to organize and host his visit. When we contacted the family the man told us that they were first introduced to Mark (the Herbalist) when their son was diagnosed with a terminal cancer and given 2 months to live by John's Hopkins' cancer center. Without any information from us on Kristine's condition, he added that his son had a sarcoma that had metastasized into his lung. He claimed that in just 2 months his son's scans showed that the cancer had vanished from his lungs and in a total of 8 months his son had no readable traces of cancer left.

Of course, this all sounds too good to be true and I have a difficult time believing any of it. But for the time being it's providing us with a little more hope than we had yesterday and a little more inspiration to push us forward and fight. We set up our appointment for next Tuesday. We will be sure to keep you updated with the latest.

Scared Certain

On Wednesday, I spoke with Dr. Staddon's office about the results of Kristine's latest scans. Kristine prefers to avoid going in for office visits if she can these days.  The entire experience gives her a great deal of anxiety with little achieved by the end to provide any hope.  Dr. Staddon's nurse practitioner explained the results.  I'll get right to it.

First, the positive news.  The area in Kristine's brain where the tumor was resected shows no signs of new disease or abnormality.  The second tumor -- that which was treated by Gamma Knife radiation -- continues to shrink significantly. There are no new signs of additional disease in Kristine's brain. It's amazing that what we at one time thought was a certain death sentence has been downgraded to a secondary concern to monitor.   

On a more melancholy note, the tumors in Kristine's lungs continue to increase in size.  In October, there were five tumors identified.  The latest CT scan shows nine tumors of various sizes -- the smallest about 0.8cm x 0.6cm and the largest about 4.3cm x 2.3cm.  The growths have caused Kristine to cough more frequently and, occasionally, experience some shortness of breath when exerted (for example, after climbing stairs).  The doctor did not request scans of the lymph nodes, but we can assume that the same pattern is likely at play.  Especially since Kristine has been experiencing more pain in her shoulder and at least one tumor is clearly visible and larger than it was several months ago.  

Throughout our experience with this disease, Kristine and I have always had a plan.  When first diagnosed with cancer, we quickly got Kristine on an aggressive chemo regiment.  Once that was complete it was on to heart surgery to remove the remaining tumor.  Once it felt like Kristine was out of the woods, she got herself on a strict diet to build up her immune system.  Then the brain tumor hit and there was a strict rehabilitation schedule to follow and Gamma Knife surgery in which to put our faith.  But now we are facing what seems to be a dark tunnel, no options in front of us and no concrete plan to inspire us and give us hope.  We are both scared, but Kristine especially.  She has to live with the pain that reminds her constantly of her affliction.  It leaves the rest of us only to image how it feels to experience a lack of control over what's happening inside one's own body.  

So where do we go from here?  We continue to explore holistic treatments and are talking about getting serious about our diet again (we fell off the wagon in the last 6 months).  However, an important element in this equation is our continued and absolute belief that Kristine will prevail in this fight.  We sincerely believe that something will present itself to us as a solution to heal her. Just as when we thought brain cancer was the end of the road and a cutting edge treatment was employed to solve the problem, we fully believe that another solution will materialize.  It is our unwavering belief that drives us.  Not simply hope, but rather a certainty --however naive -- that we will soon see some light at the end of this dark tunnel and move on to the next chapter in our lives.

Laugh Therapy

On Friday, Kristine went for her 3 month scan appointments -- MRI of the head and CT of the chest.  It was the standard procedure.  First to Pennsylvania Hospital at 9 am for the CT.  Of course, we forgot to request the referral ahead of time so we had to call our primary care physician's office to process an emergency request (we've learned that it's best just to lie and get it done quickly then to try to explain why we didn't allow them the requisite 72 hours for processing).  The referral appeared in the Penn health system records within minutes.  The CT took about 40 minutes including the wait time.  

When we were through we wheeled across the street to Spruce MRI for Kristine's next scan. The staff there are all very friendly and know Kristine by name.  We wait for about 20 minutes before the nurse assisted Kristine into the back room for her procedure.  She asked Kristine if she would be listening to her usual radio station, B101, for the 30 minute scan.  Kristine replied to confirm the selection.  The morning scans were running behind schedule and I had a meeting to catch in Wilmington that afternoon -- 45 minutes away.  Our friend Simone was nice enough to meet Kristine a little early at the MRI office to pick her up so I could get on my way.  It was raining hard that day but they decided to go out to lunch after she was finished anyway. 

Kristine's cough has been steady.  It gets a little worse in the evening when she is tired and whenever she is tense.  She has not coughed up any blood since she was in Texas several weeks ago.  The lump on her right shoulder where cancer has developed in a lymph node looks to be stable in size from what we can see.  Although Kristine has noticed more pain in her right shoulder, arm and neck.  This is likely related to the swollen lymph node.  It could also be related to the extra work she continues to do on her right side to compensate for her left.  We will hear back from both the oncologist and the neurosurgeon this week to discuss the results of the scans. This is always the most stressful period -- waiting for results. 

On Sunday, the weather was nice.  Kristine and I wanted to get out of the house and enjoy the warm temperature.  We have found it difficult to use the wheelchair in the city.  The uneven concrete and brick walkways make for a jarring and unpleasant stroll for Kristine.  Just the thought of pushing her around reminds me of our escapes from the rehab center in late Fall last year.  She relished in the bumpy ride then.  Instead of barring the terrain by wheelchair, we opted to go for a ride around the city in the car.  So with the windows down and Rufus in the back, we drove through the streets of Philadelphia watching the locals with spring fever and listening to Jim Gaffigan's new comedy routine.  We laughed nearly the whole trip until the album was over and then headed home.  The laughter was good therapy for both of us.