Understanding

The graft was checked Monday and Wednesday and won’t be inspected again until the coming Tuesday.   It looks good so far.  On a normal person, it would be expected to take between 2 to 5 weeks to take hold.   Nobody knows what will happen with somebody who is under chemo like me. Thankfully, the pain has remained low.  I will be getting the additional chemo infusion next week.  Hopefully, I won’t be much more miserable than I am now, and it won’t kill the graft.

Last week, I shared our experience in wound care.  I want to add something to that.  Medical doctors are highly trained professionals, and they are conditioned and encouraged to think about protocols and indications.  Doing something creative, even when needed, causes them extra energy and time to deal with organizations such as hospitals and insurance companies.  They have to do research, collect data and write letters to justify their recommendations.  They are not rewarded in any real way except feeling good about helping out patients and, at times, a patient’s gratefulness.  That is why a physician who listens to a patient’s concerns and responds in a caring way is a godsend, and we are grateful that we have run into a few.

May this find you and your loved ones in good spirit and health.

After waiting for almost 10 days and being given the impression that the insurance company had been dragging its feet, I decided to call to see if there was anything I could do.  The case manager, whom I had never spoken to before, was wonderful.  She got on the phone immediately and figured out the hold-up was actually in the hospital administration (not surprising, but it is a long story).  After working the phone, the fax and memos to the doctor (delivered in person) for a couple of days, the graft was approved Thursday afternoon, and the doctor immediately squeezed me into his Friday afternoon schedule.  The procedure took about an hour, and the graft will be checked Monday and Wednesday to see if it is taking hold as well as to determine what to do next.  The chemo schedule is also going to be dependent on the outcome.  The first five days are very critical.  However, there is nothing I can do besides having happy thoughts and prayers. The pain has reduced so much that I have not needed any pain medication since the graft was put in. Hopefully, that is a good sign.  (When the wound was filling in pain and bleeding were good signs because that meant viable tissues.)

Regardless of the outcome, the living cell graft is a modern bio-engineered wonder that enables people like me to avoid the risk of creating a second painful and hard-to-heal wound in the donor site.  Hopefully, I will be able report a good outcome in the next update.  

While I hope none of you will ever need as much medical care as I do now, I want to encourage you to keep on talking to all your doctors and nurses as much as possible if you ever find yourself in a similar situation.  Our health care system is very compartmentalized due to its highly specialized nature, and nobody knows everything.  None of my doctors realized that I had radiation necrosis when my wound refused to heal on its own and just told me to be patient.  By chance, we were talking to an old, and hence, experienced nurse who told us about the wound care center.  As soon as he reviewed me and my history, the wound care specialist knew immediately what we were dealing with and recommended the hyperbaric therapy which, if successful, prepares the wound for closing either by a flap or skin graft.  When there was a concern about whether that would potentially create a second wound, it was another nurse at the insurance company who mentioned an “artificial graft”.  I then went on the internet and found a bi-matrix “artificial skin” and gave the wound care doctor the literature. It turned out that my layperson’s discovery was not really appropriate for the condition I was in.  However, it got the doctor thinking about the possibility of a bio-engineered graft and, after some research, led to the recommendation of the graft I am using.  

May this find you and your loved ones in good spirit and health.

The grafting procedure has not been undertaken yet because the insurance company is still evaluating it. The new chemo will begin first this week, and its schedule will be adjusted as needed when the grafting is approved.  The wound is still filling up and hence can be really painful at times as there are more nerve endings near the surface.  One day, I could not walk without a cane and pain medication for about 24 hours after a dressing change.  Fortunately, it has not happened since.

People like to ask me how I feel, which seems to be a simple question.  Sometimes it is difficult to know how I actually feel.  I am not sure if I am feeling full or hungry, nauseated or bloated, warm or cold, needing to defecate or simply passing gas, etc.  I think this is a sign that my sensory system is being overwhelmed by stimuli from all over my body.  One almost surefire way of dealing with it (though it does take will power to carry it out) is to do something intellectual such as preparing for teaching, writing, or doing some research.  It is not unusual for me to take up to 10 minutes or even longer to actually reach for my laptop after the moment that I decide to do so.

Someone said “I have faith so that I can bear suffering in life.”  I have faith because there is something beyond suffering in life.

May this find you and your loved ones in good spirit and health.

The latest scan showed that the two-month long chemo miracle has ended.  Two new chemo cocktails have been suggested with a tentative starting date in about 10 days.  It will also depend on if/when the grafting will be approved because the chemo will hinder the chance for the graft to take hold.  It is a tricky balance. Needless to say, we are all very disappointed by the news, and I am both amazed and frightened by how smart these cancer cells are in mutating to find ways around the drugs time after time.  I am now at the two-yard line again waiting for another miracle.

The effect of pain:

The way one responds to an internal or external stimulus, such as a feeling, a success, a failure, a conflict, an insult, a threat, etc., changes as one goes through the journey of life.  At the beginning, as a baby and then as a child, one’s response is more instinctive and animal-like.  A baby cries whenever it is not satisfied.  A child may throw a temper tantrum whenever he/she does not get his/her way.  As one becomes more mature and developed in the dimensions of soul and spirit, one’s responses may be guided more and more by one’s rationale, principles, and spirituality, and hence, one gains more freedom from one’s animalistic instincts to choose a possibly more positive and constructive response.  For example, one may gradually learn to seek a win-win solution under most circumstances instead of insisting on ‘my way or the highway.’

Pain is a primitive sense that is critical for our survival. It is like a smoke alarm that demands immediate attention and may signify a real problem. It urges us to disengage from a potentially harmful situation.  However, it sometimes becomes a real problem in its own right when it cannot be alleviated quickly e.g., when disengagement is impossible.  

As an agonizing pain persists, it inflates our animal instinct to overwhelm our mind and spirit to deprive us of the freedom from our animalistic instinct.  One’s facial muscles tweak to betray our best effort in hiding the pain. One cannot help tensing up one’s muscles to be ready for either fight or flight though neither would be possible nor helpful under some circumstances.  The heat produced by these muscle activities makes it feel like 100 degrees and causes one to sweat profusely. While badly desiring immediate relief, one’s mind amplifies the fear in anticipating that the worse may still be yet to come. One wants to find a posture that minimizes the pain but every slight movement could potentially make it worse too. One develops a tunnel vision that is so narrowly focused on the pain that one can no longer think much about anything else.  It is a form of ultimate self-centeredness. Eventually, one gets so exhausted that one can no longer keep one’s muscles tight anymore.  One gives up in exhaustion and either cries out to or curses God.  (It would be really nice if our body has built-in switches for turning off the pain sensation before it gets this far.)

May this find you and your loved ones in good spirit and health.

Narrow strips of non-viable skin, about 8 cm in total length with an average width of 0.5 cm, had been hanging over part of the rim of my wound for months.  Due to both radiation damage and undermining, they weren’t able to get adequate blood supply and were discolored, i.e., black and blue.  The wound care doctor had wanted to remove them surgically to clear the way for new skin growth.  Originally, he wanted to do it the week before this last week.  However, it was postponed to this last Tuesday after I told him, “Let’s do it next week because I am not mentally ready for another surgery yet”.  On Tuesday, I went to the hospital after taking the maximal allowed dosage of pain medication and was expecting to be in much pain afterward because of the length of the would-be incision.  

When the three-day-old dressing was removed, we saw something totally unexpected.  All the dead skin had vanished in three days except a piece which is about 1cm long.  The doctor was so amazed that he decided there was no need for the surgery anymore.  Instead, he just aggressively scraped (debrided) the wound.  Although I was in more pain than usual that night because of the aggressive debridement, I was actually joyful and thankful because I was expecting something much worse.  

On the tumor front, everything has been pretty much within its normal range of ups and downs.  The chemo still makes me somewhat sick, and meals are difficult to enjoy.  It does consume significant mental and physical energy to do what has to be done, such as pushing down enough nutrition.

Teaching is going well although it could be demanding at times.

May this find you and your loved ones in good spirit and health.