The Long Story

This is the “long story” mentioned in “Testimony.” I'll place it here because I like it and no one else will read it anyway.

My January, 2008, hernia repair surgery took more than two hours. That worried Carolyn because her full hip replacement surgery took barely an hour. Dr Kim came out and told Carolyn and Michelle that everything went fine but that he found some “calcified scare tissue” which was unusual. He figured it was nothing to worry about but since he didn't know what it was, he sent it to the pathologist to identify it. Dr. Benjamin Kim is a noted oncology surgeon and the fact that he didn't immediately recognize it is an indication of how rare it is.

A week later, when we went in for our follow-up appointment, he said that he had talked to the pathologist just before our appointment and the news was “serious.” He said it was MFH (malignant fibrous histiocycoma) in the spermatic chord. That was a rare combination and he wrote those words down on paper so that we could google them. I jokingly asked him, “How long do I have to live,” and he non-jokingly responded, “I'm not sure.” MFH of the spermatic chord is very rare – only a couple of dozen cases are noted in recorded history, but it was somewhat safer than MFH in the general abdominal cavity. He said that he had not found a core mass from which the tumor could be emanating. When asked if that was good or bad, he said he wasn't sure. He tip-toed around the question, but one got the impression that it probably wasn't a good sign. It could mean that the core mass was somewhere else in the abdomen and that it had simply metastasized to the spermatic chord. It turned out he had a hunch that the mysterious indications in the August, 2007 CT scan which had alternately been diagnosed as a small diverticulitis that had not shown up in the colonoscopy or as an appendix aploica was in reality this core mass – which turned out to be essentially correct – but he didn't tell us of his hunch until later.

However, the Internet gave us much unvarnished information about MFH reported with clinical detachment. There were some cases of spermatic chord MFH which had been cured, but it was by no means 50%. MFH in an extremity such as an arm or leg could sometimes be cured by removing the arm or leg. MFH in the abdominal cavity was almost never cured. The likelihood of my surviving for five years with such was pretty much nil and more likely death would occur within three years. It was only our state of denial that gave us any hope at all. It had to be in the spermatic chord and we would be one of the minority cases that would be cured. The foreboding image of it emanating from a large mass higher up in the abdomen and the death-sentence that would be, we tried to ignore.

I always thought that I was so spiritually mature and at ease with death being part of life and a necessary step toward exaltation that I would completely bypass the stages of mourning when presented with the prospect of my own death. That proved to be incorrect. I didn't jump straight from information to acceptance. I don't think I was ever in the anger stage. That was one that I missed, but all the others were there. As mentioned above, denial was prominent in all our information research, and we struggled to maintain it even as data gnawed at it. I'm not sure about Carolyn, but I, myself, went through the negotiation stage in my fervent prayers. Well, I'm sure Carolyn did that too. Depression was a biggy for both of us. It was the main issue for the three weeks that we thought I might die soon. And, as suggested on the Internet, we went in and out, back and forth, from one of these stages to another.

The acceptance stage was gradually solidifying around us. I began to make plans for what I needed to accomplish in the next year or so of healthy life I had left. Spiritual issues became preeminently important. We saw into eternity and making plans for it were vital. Our dedication to the Lord and our commitment to Him increased significantly. We even agreed that we would be willing to serve a couple mission if we got the chance.

Tom and Bill administered to me. So did Bishop Reese and Bob Palmer, our high priests group leader. Many in the family held a fast day for me – which I was scarcely aware of. Helen contacted her entire posterity and had my name put on the prayer rolls of various temples. Later she recited to me a partial list of those temples in places around the world. I didn't remember many of them except that I noted at the time that she named temples in places I didn't know there were temples. Also, she said that many of her posterity attended the temple and participated in the prayer circle in my behalf.

Dr Kim tried to give us hope. My unusual case was being carefully monitored by the “cancer board” which met every Friday and consisted of experts and specialists from all over the valley. He had gotten lots of suggestions and council from all sorts of different disciplines. He said that during the surgery, they would send real-time samples to the pathologist to guide the scalpel. They prepped me to allow him to remove part of my colon or intestine if necessary and promised that any disorder at the incision boundary would be taken care of by radiation. If the pre-op CT scan showed any tumor seeds in the lungs (which it didn't), they could also be excised. All in all, it stood a good chance of lengthening my life span. He tried to be encouraging and, if the promise of good outcome disagreed with the Internet, it must only be because of excellent progress that had recently been made and because of Dr. Kim's great reputation (and it is great as indicated from the Internet and from many good words about him given us by friends and by physicians) – and because we went in and out of denial.

In the weeks before the surgery, Carolyn schooled me in numerous exercises to say, “Hi, Honey, I'm fine, I love you” as soon as I became conscious after surgery and saw her for the first time. This I did. Her face was the first thing I remember seeing and I repeated as trained, “Hi, Honey, I'm fine, I love you.” She seemed to barely force a smile, said almost nothing, and disappeared immediately. I was disappointed. Didn't I do it right?

I was told that she went somewhere and broke down. It had been a trying six hours.

We were told that the operating room was scheduled for only two hours. I kissed Carolyn and was wheeled away at about 2 p.m. She and Michelle expected the surgery to be finished by 4 p.m. Instead, I was moved to a holding room for an hour and was taken to the operating room at about 3 p.m. People puttered around, Dr. Kim came in and greeted me, and the next thing I was aware of was Carolyn looking at me over the bed railing. The surgery actually toke more than four hours. Carolyn and Michelle received no information until 7 p.m. and it was another hour before they could see me. Beginning at 4 p.m., Carolyn became increasingly panicky and was beside herself after a three hour wait.

The surgery encountered a rather large tumor called a “well-differentiated lyposarcoma,” or a cancer of the fat tissue. Guided by the real-time pathology analysis, this entire tumor was excised together with all the fat in my lower left abdominal cavity. Also excised was the left spermatic chord and the left testicle. Since the spermatic chord contains the blood vessels that supply the testicle, the latter could not be left in after the chord was removed. Dr. Kim described the excised tumor mass and held up his hands to show an approximate size which Carolyn reported, with some dismay, as being the size and shape of a football. He later clarified that it wasn't the shape of a football. It was more the shape of a squid with the body at the top and the tentacles reaching down the cavity into and around the spermatic chord. Since the tumor was a lyposarcoma and did not involve the anything except the fat tissue, it was not necessary to remove any of the colon or the intestine. He reported having placed “clips” in my body to delineate the excision margins and to help position the gun for later radiation treatment.

Carolyn spent most of her time with me in the hospital room, so she was there four days later when Dr. Kim came in late Saturday afternoon and uttered the words: “Good news!” It seems that almost nothing of the original MFH was found in the pathology report. There was just “one microscopic location” of the original tumor in the center of the excision mass. The MFH had therefor been removed with a “generous margin” as is required to stop this tumor. An examination of the three lymph nodes that had also been removed showed no tumor. This is good evidence that the tumor had not widely metastasized and that, statistically speaking, it had all been removed although the pathology report (which see on the Head Family web site) included the standard CYA clause stating that they were unable to test for distant metastasis. In other words, at the time of the hernia repair, most of the dangerous tumor was removed when it was excised to send to the pathologist. This shows that even the scariest cancers can be dealt with if found early enough, and the hernia had accomplished that.

A well-differentiated lyposarcoma is relatively benign. It seldom metastasizes and can be controlled almost indefinitely through surgery. I told Dr. Kim that this was my understanding of “benign tumor .” He said rather emphatically that it is definitely a malignant tumor, so I had to look up the medical definition of malignant vs benign.

A benign tumor does not metastasize, it does not invade other organs, and it is encapsulated inside a membrane. A well-differentiated lypsarcoma does not usually metastasize or invade other organs, but it is not covered with a membrane and does invade the space between organs. It will eventually crowd the organs and disrupt their function, thereby killing the patient. When excised, it usually comes back where it was before.

Note that “well-differentiated” means that the tumor still behaves like the original material from which it comes. A non-differentiated tumor is tissue which has lost all former functionality and appears to have, as it's one objective, to simply grow beyond all bounds. “Well-differentiated” means that the cancer tissue still performs much of its original function. In this case, it stores fat when told to by the body's endocrine system. It pulls blood lipids out of the blood or converts blood sugars to fat and stores them. When called upon, it will also release these into the blood. It grows when we gain weight and shrinks when we diet, etc. The problem is that it continues to grow even when we are maintaining a stable body weight. It looks almost exactly like fat in the CT scan and can be distinguished from it only by examining it closely. Dr. Kim showed us some of the images obtained during the arthroscopic investigative examination that proceeded the surgery. They show the tumor with a blue tint compared to the pink of the fat.

But it grows slowly and, as stated, can usually be controlled with surgery. The Internet says that the five year survival rate is essentially 100%. Probably it's most severe problem is its propensity to mutate to a much more deadly form. And that's what it seems to have done in this case. It became an MFH. No one knows why this mutation occurred, but it is suspected that the lypsarcoma, which must have been with me for a long time, was induced to mutate by the radiation treatment that I received as part of my prostate tumor treatment in 2001. That's about the right time frame. If the radiation had stimulated a tumor from scratch, the intervening seven years would be a rather short time frame for such to show up. But for a single genetic mutation that would be necessary to convert a lyposarcoma to an MFH, seven years is about right, particularly considering that it was found early, and if it hadn't been found so early, it would have been a number of years later and well advanced when it finally made its presence noticed.

In any case, the pathology report could not identify any incision margins that would be suitable candidates for radiation, so no radiation is planned. Note the neither of these tumors, neither the MFH nor the lyposarcoma, are considered to be good candidates for chemo. Chemo would only be used if it were found to have widely metastasized and that would be considered to be a last-ditch effort with little hope of long-term success.

As it is, the planned management is to take a full torso CT scan every 6 to 9 months and watch the progress of the lyposarcoma or anything else that might be increasing in size. Dr. Kim suggests that in five to eight years, another surgery will likely be needed. And, of course, God has a tool he can use to take me anytime he wants. Another mutation will likely be undetected until it is too late and my death will follow within a year or two.

Of course I already have my chronic productive cough which has been with me since 2003, cannot seem to be effectively treated my medical science, and is getting worse. It could turn into fatal pneumonia anytime the Lord desires.

Maybe next time we will truly be able to skip all those other stages of mourning and jump right to acceptance after all.