Kate's Story

To grasp the Power of Kate's travail, it is helpful to realize that Kate Verdon Spisak is a Saint.

My meanderings now are intended to depict Kate's course after being informed, alone in a strange (new) doctor's office on December 8,1997, that the biopsy results of a small recently discovered lesion on her right thigh revealed a dreaded malignant melanoma. This date coincided with my (her always adoring Dad) 58th Birthday. Kate called me at the office. Given that Katie never wished to intrude on others, my office staff thankfully followed my mandate to promptly transmit all calls from my children to me.

After first wishing me a Happy Birthday, Kate fumblingly apologized for advising me of the 'scary news'. Aware that I am a perpetual worrier, she had not wished to burden me about the discovery and biopsy 2 weeks prior. She and Craig, her husband to be, had been awaiting the results for that lengthy time - inexcusable as was much of her care until through a tortuous course she was seen in Consultation , now Stage IV, in March of 1999 at the National Cance rInstitute, by Melanoma and Renal Cell Carcinoma guru- Dr. Steven Rosenberg, Director.

Talking with Kate, informed that Craig was out of town on business, I realized that Kate was confronted with this diagnosis alone. Kate had not asked any of her multitude of friends to accompany her to the Dermatologist's office. She had placed her birthday call to me from that setting.

Kate was promptly directed to see a young oncologist in Fairfax ,VA - a Washington DC suburb where she resided. I spoke via phone with the Dermatologic Surgeon, a well trained young Doc who had performed the exciscional Biopsy. He informed that the depth of lesion was 1.4 mm in thickness - miniscule - which meant absolutely nothing to me at that time. The subsequent pathology report actually described a 1.5 mm depth. Further, I was told that thebest predictor of long term survival in absence of even regional lymph node spread was depth. Less than 0.75 mm thickness excellent prognosis. Kate's depth suggested a 95% 5-year survival.

Kate's Mom promptly sojourned to Fairfax, attended with Kate the consultation with the Oncologist. I had been advised by Kate that she "had no palpable nodes" when in fact she did have shotty, bilateral, inguinal nodes.

The only sharp words I ever had with Kate about her illness revolved about this point. Kate, after graduating from Wheaton College in 1989, in her need to serve the unwashed, returned to Johns Hopkins where she earned her BSN. At the time of diagnosis Kate was serving the poor at a women's clinic in the District of Columbia - she dismissed these findings (the shotty nodes) as manifestations of pelvic inflammatory disease, which may have been accurate.

Kate was offered the option of exploratory dissection of her groin with the attendant possible complication of lymphedemain her leg. Sadly, Kate was not offered the opportunity of Sentinel Node Bx. Since my specialty is Psychiatry, I was not aware that the approach was cutting edge, and now is standard of care in early evaluation of a melanoma of any depth. Although I have been told by the Docs at NIH/NCI that my self castigation for not urging the same is inappropriate, I do fault myself for not pressing the point when I became aware - 2 months later - that such was indeed available.

Being a vain, beautiful woman, Kate rejected the extensive complete inguinal node dissection. Given the subsequent clinical course, it is most probable that Sentinel Node Bx would have been positive (an oxymoron), leading to at least earlier contact with Dr. Rosenberg.

For 10 months Kate did well, doing vigorous self exams, visiting her dermatologist every 3 months and oncologist every 6 months. Initial work ups included standard CBC, liver function studies and Chest Radiograph--- all interpreted as WNL.

Again, most annoying was a 2 week delay in obtaining the results of the Baseline Chest X- Ray - which still makes my blood boil. The Medical profession woefully fails both patients and families in these "anxious waiting" times.

Then in Oct 1998, Kate felt a lump in her right groin which led to a complete dissection by a caring surgeon of her inguinal nodes. Of the 21 nodes taken, 2 were grossly dirty (black), 2 showed melanoma cells upon microscopic examination. This placed Kate in Stage III. I discovered through my brief reading that the prognosis was extremely grave (more than 2 positive nodes.)

The point of this obsessive recounting - be aggressive in your approach from the get go with this unpredictable disease. Care not if your doctor is "low key". Our Family Internist, J. Putnam Brodsky MD in Rumson, advised me at the time of original diagnosis - speaking from his own experience with his Dad - "Jack, make sure you are aggressive". Sadly we were not.

Instead of being directed to a higher level of care, Kate began on a course of Pegylated alpha Interferon, weekly - she had been randomized to same at a Community Hospital in Fairfax - absurd considering that NIH/NCI-Dr. Rosenberg is in Bethesda, 30 minutes away.

Again, I did not intervene except to express my wish that Kate receive a consultation at Jefferson University Medical Center in Philadelphia where an oncologist had been treating patients with some dramatic success with a vaccine prepared against patients melanoma. Unfortunately Kate's oncologist with whom she had rapport and "utter" confidence, flatly asserted this doctor only treated Stage IV patients - absolutely false! Kate's WBC count plummeted on Peg Interferon - such treatment was suspended.

Of happy note - Craig and Kate were formulating plans for their wedding. Both thought it would be 'neat' to be wed in the year 2000. Kate expressed a wish to married in Dahlgren Chapel, Georgetown University, where I had graduated Medical School. Through the efforts of Kate's aunt Pat, my sister who had a close friendship with the then President of Georgetown, Leo O'Donovan, S.J., such was arranged.

I relate these events to portray Kate's philosophy - she would live her life to its fullest. This was not a manifestation of denial, but a steadfast pursuit of life. Neither she nor Craig would cower before her cancer.

Sadly still no referral.

Equally distressing was when Kate planned to return to work, serving the Poor at Planned Parenthood in DC (she had been elevated to Director of Nursing at a Clinic that provided GYN care to the uninsured). She requested to delay her return from a 3 month Disability by one week to accompany Craig on a skiing vacation that had been planned for more than a year. She was denied.

Wisely, Kate resigned that position, and was promptly was engaged by a charming young woman doctor OB-GYN who was starting a private practice in Georgetown. For 2 months Kate served in that office. She could make her own schedule and "loved the work".
Wedding plans were moving apace, but in March I received a call from Kate as I was departing for the office. She felt a lump under her left arm.

Kate discovered every single lesion she had. Removal of same revealed the first of myriad subcutaneous nodules - not nodal - but reflected the hematogenous spread of this aggressive melanoma. I picked up the phone, contacting two loyal medical school friends of mine which resulted in prompt appointment with Dr. Rosenberg's Group at NCI.

Kate was still feeling well. Functioning at her always "super level". At long last Kate was in good hands. Extensive CT SCAN et al shockingly showed definite mass in Right Basal Ganglia region in Temporal Lobe.

Kate flew on her own to Houston and rented a car at Houston Airport for consultation at the renown University of Texas - MD Anderson Cancer Center, where the bedside manner of the physicians she encountered left much to be desired.

After consultation back at NCI with Rosenberg's team, she learned that the 'immune approach' at NCI could not be done with active Brain Metastasis-even solitary-because dexamethasone (steroid) would suppress the immune response and Interleukin would cause Brain edema. Upon review with the NCI NeuroSurgeons, Kate was directed to a renowned Neurosurgeon at University of Virginia who was a pioneer in Gamma Knife, a then quasi-experimental radiosurgical approach..

At this juncture I implored Kate to cease her allegiance to her oncologist in Fairfax who frankly did not have a clue. At the end of my rope, I advised him that Kate's immediate treatment must be directed by doctors who were pursuing "cure" and life which was Kate's goal - not palliative care.

The initial gamma knife response was excellent.

Wedding plans were finalized as Kate began her NIH experience. In May 1999, Kate gave me a tour of the Reception Hall in Washington- a glorious spot - where a grand wedding reception was celebrated on January 22, 2000, following Mass at Dahlgren Chapel. Kate also mentioned, "I have another nodule", which was to be just one of many that continued to "pop up" all over the place.

In August 1999, CT SCAN demonstrated clear shrinkage of the basal ganglia mass. We were ecstatic - no signs of other spread and no new nodules. Alas, early Dec 1999, routine SCANS (Kate received vigorous monitoring) suggested possible recurrent lesion which was confirmed on PET SCAN- even in face of at least 2 toxic Interleukin courses. A vaccine had been planted which was specific to Kate's Melanoma. Kate was scheduled to be the2nd patient to receive infusion of her own cells which had been harvested with anti melanoma powers. This approach had to be put on hold.

Kate underwent a complete resection of brain lesion by the first of NCI's mastermagician surgeons. Most miraculous - no post op residual. Kate was worried she might "limp down the aisle". Not only no limp, we danced the night away at the reception 6 weeks later. A glorious night this Dad will always remember with profound gratitude.

Kate and Craig deferred their Honeymoon trip.

Kate entered NIH on January 24th for the infusion of her harvested cells and more Interleukin, which she tolerated for the first time without problems. In April, however, the gas began to run out. "Routine" testing - Kate, still feeling quite well (that's what she told me), noted marked elevation for the first time of Alkaline Phospatase and modest bilirubin rise. Fearing the worst (hepatic metastases), work up suggested bile duct obstruction. Enter Magician NCI Surgeon II, a Liver Surgeon who removed a large retroperitoneal lymph node that was obstructing the common bile duct. Metastases also coated but did not invade the pancreas - these were "scrapped of".

The situation was more than grave, but Kat's will was strong. Her brother Michael was to be married June 23rd, and her "baby" sister, Renee on September 30th. Then came the complications of "shingles". We breathed a sigh of relief because before the cutaneous eruption, Kate experienced intense belly pain suggesting a bile leak. Fortunately not so but from that juncture on, life became a daily struggle.

In obvious distress from the ever enlarging SubQ nodules, Kate attended Mike's wedding in Ohio.Typical of Kate, during the Mass, Kate turned to me "Daddy, do I have to genuflect?"
As I approach the finish line of this journey, my heart becomes heavy.

Renee's wedding was scheduled for September 30, 2000, at the Jersey Shore where Kate was raised. She was to serve as Matron of Honor. In mid September, Kate developed left leg weakness and a Seroma in her left thigh. CT revealed new brain lesion. Placed on Decadron.

Kate stayed with me the week prior to Renee's wedding. I saw her pain daily. Medications only made her "dopey" - which she could not accept.

Kate refused to go quietly to the grave. On September 27,2000, Kate's 33rd birthday, I had the great honor to dine with her privately at the Jersey Shore restaurant Il Picolo Forno, a favorite of her brother Mike, who had entered his first year in medical school a great distance from home. We finished with an ice cream at Wilson's in Long Branch-marred only by Kate's frustration at her Left Foot "dragging a bit."

Three days later, September 30th, Kate elegantly strolled down the aisle of Holy Cross Church in front of her sister Renee, attending her in style.

Three days later Kate experienced massive bilateral lower extremity edema caused by "sudden" inferior vena cava obstruction. Kate shortly thereafter experienced her first convulsion. She was promptly admitted to NCI and Dr. Rosenberg, where she was treated with dignity until she went to the Lord on October 28, 2000, 4 weeks after attending her sister.

Five weeks to the day of Renee's wedding at Holy Cross, I delivered Kate's eulogy at that same church, without a note--guided by Kate as I am now. I noted then and again now, Vita Mutatur, Non Tollitur--Life is changed Not Ended.

Kathleen Mary Verdon Spisak sits at the right hand of her patron Saint, The Blessed Virgin Mary.

Her devoted, yet still devastated Dad