Medical and Personal History

2006   |   2005   |   2004   |   2003   |   2002   |   2001   |   2000   |   1999   |  

2006

June 2006

Jean attends physical therapy at the rehab center in Assembly Square.

May 2006

Jean is visited by a physical therapist once a week in Somerville. He runs through a series of exercises, to counter the muscle atrophy from her hospital stay and loss of nerve stimulation, and to encourage regeneration of the nerves in her leg. She practices these exercises twice a day. She needs a leg brace to lock her knee in order to stand. Otherwise, her knee collapses when she puts weight on it. She needs crutches to get around. It's incredibly frustrating to adjust to this debilitation. She makes slow but steady progress by the end of the month. The physical therapist eventually refers her to an outpatient rehabilitation clinic in Assembly Square.

April 2006

Here are the results of Jean's surgery at Beth Israel Hospital:

• March 17: Dr. Hanto and his team operated on Jean for 12 hours. First they removed massive amounts of scar tissue. They then removed the tumor from the outside of the ureter where it joins the bladder. Finally they transplanted the right kidney from the upper right abdomen down into the lower pelvis, closer to the bladder, and reconnected it with the remaining ureter.
• March 18: While recovering in PACU, Jean notices she can't move her right leg. At first the doctors attributed this to the epidural, which may have leaked and affected her nerves. The epidural was removed. Jean underwent ultrasounds and MRIs to determine if there was any spine or nerve damage from the epidural. All scans were negative for any damage.
• March 19-24: Jean is healing well from her surgery, but cannot move her right leg. Surgeons, anesthesiologists, and neurologists visit over several days. Nobody offers a definitive diagnosis. They suggest something happened during the surgery to compress or damage the nerves that control the muscles in her upper right leg (quad and femoral muscles). Without these muscles, she can't move her leg forward, lift it up, or stand up (these muscles control strength in the knee).
• March 25: Jean's right kidney failed last night. Dr. Hanto removed the kidney during emeregency surgery on Saturday before the body went into septic shock from tissue rejection. She recovered well from the surgery, but terrible disappointment about the failure and her right leg.
• March 26-31: Neurologists and physical thearpists visit Jean nearly every day. She had to make a fuss to the doctors: she wasn't getting enough attention focused on the leg, what was wrong, how to fix, and how to deal with it. The physical therapists show her how to walk with crutches and how to climb steps (very slowly). They say she'll need several months of physical therapy. The therapists, neurologists, and her doctors from Mount Auburn agree the nerves probably were compressed during surgery. She was on the operating table for 12 hours, with clamps and retractors holding back tissues and adhesions. One of those retractors probably applied too much pressure to a batch of nerves for her leg. The good news is that nerve compression eventually heals. The bad news is that it could take several months, or longer, of physical therapy.
• April 2: They discovered a small leak in Jean's bladder. It seems that after Dr. Hanto removed the failed right kidney, they did not stent or put a balloon into the bladder (which would ease pressure on the bladder tissue until it heals). When the bladder started functioning again, it expanded and popped one of the surgeons' stitches. They put a stent back into her bladder to let the wound heal.
• April 5: The hospital kept her under close observation for a few more days, watching out for fevers that would indicate internal infections. She was discharged and sent home on April 5.
• Total days in the hospital: 20 days (March 17 - April 5)
• An enormous THANK YOU to everyone who visited, called, wrote, e-mailed, posted on this website, and just generally supported us. This was one of the most stressful experiences we've had and we couldn't have made it without your help.

March 2006

Jean’s surgery is scheduled for March 17 at Beth Israel Deaconess hospital in Boston. Though she is not thrilled with leaving her comfort zone of Mt. Auburn Hospital, both Jean and Pat are very impressed with Dr. Hanto and know they are in very good hands. She will be in the hospital about a week, followed by several weeks of recovery at home. Dr. Hanto plans to use Jean’s abdominal incision as a point of entry rather than through the back as in typical kidney transplants. There is much work to be done in the abdomen, including peritoneal scraping, removal of the scar tissue at the base of the bladder, and getting a good view of the ureter to determine if the tumors penetrated from outside the ureter or if there is any evidence of disease along the ureter. Dr. Nauta won’t be participating in the surgery though he may observe and will definitely be involved in the follow up.

And so it begins again. Sixteen months since the last surgery, the cancer has recurred (or possibly just re-appeared, never having been cleared out in the first place). Jean and Pat are devastated with this news – in the 6 years of battling this, Jean hasn’t been able to go longer than 18 months without a surgery. The scariest part of this is that neither the CT scans nor the tumor marker blood tests showed the disease this time. Which means no one will be able to predict where the tumors might show up next.

February 2006

Jean tries to continue with Erbitux treatments but the antibiotics from UTIs and other infections have wreaked havoc on her digestive system, causing the diarrhea to increase three-fold and back into the high teens in terms of number of bathroom trips per day. Also, the stent is still causing more pain than is comfortable and pain meds are not doing much good either.

Dr. Karian schedules a day surgery procedure to remove the jumbo stent, inject a dye and try to get a better picture of what is going on inside Jean’s ureter and kidney. The surgery goes off without a hitch, however Dr. Karian does leave a stent in place and removes a bunch more polyps. A week later the biopsy results are back – malignant, muscinous adenocarcinoma of the appendix. Jean’s cancer has recurred in a place no one has ever seen it before. Jean and Pat immediately go into research mode and find a study just completed in the Netherlands regarding appendiceal tumors and the urinary tract. While the doctors there haven’t seen any tumors inside a ureter, they do agree it’s possible that the cells made their way up the ureter from the scar tissue at the base of the ureter where it has been re-connected to the bladder.

There is much discussion between doctors –Dr. Nauta reviewed the reports and decided the best course of action would be to have surgery at Beth Israel where they are trained to do kidney transplants. Dr. Hanto agrees to take Jean on as a patient, and to perform an auto-transplant of her kidney. Basically removing the damaged section of ureter and moving the kidney down to the abdomen, thus saving the kidney. It’s the best option available and Jean and Pat agree to the surgery.

It’s decided to suspend Erbitux treatments indefinitely to allow Jean to regain her strength for the surgery and a decision will be made afterwards as to whether or not the treatments have actually been effective.

Back to top

January 2006

The new year does not start out on as great as Jean and Pat would like. All travel plans have been put on hold until something is decided about Jean’s kidney problems. Despite the stent, which is quite large and uncomfortable, the hyrdronephrosis continues and leaves Jean feeling pretty lousy most of the time. The nurses notice that Jean is still dropping weight and is looking a little run down. Just a combination of everything – the cancer, the treatments, the stent, the hyrdronephrosis – you name it. This really shouldn’t be a surprise to anyone. There’s only so much the human body can take and Jean is feeling like she reached her limit, especially when she develops an infection on her toe, caused by the ingrown toenail from October. But she pushes on.

A CT scan at the end of the month (the very important 15 months post-surgery scan) again shows no obvious sign of recurrence and labels Jean’s abdomen as “unremarkable”.

However, Jean and Pat are dealt a bit of blow on the kidney front. It’s apparent to everyone that the stents are not doing the trick. Leaving one in permanently is not an option so it’s becoming clear that surgery is looming in the near future. The damaged portion of the right ureter is going to have to be removed in order to get the kidney working properly. What a drag.

Back to top

2005

December 2005

Since there is no travel in the near future, Jean begins Erbitux treatments on a regular schedule once again. The usual side effects re-appear, but Jean has adapted to the constant pain and one positive side effect of pain medication is that it slows down the bowels meaning a normal person would be constipated; Jean however is down to 5-6 bathroom visits a day.

Jean developed another UTI in mid-December, which required the placement of yet another stent. The hydronephrosis isn’t reversing itself and Dr. Karian is stumped. Because of the infection, he is unable to spend any time exploring during the stent placement, but he decides to do that when he removes the stent. A mutual decision is reached and the stent is going to be left in for about 3 weeks, until after the holidays. It’s decided to remove the stent in the OR under general anesthesia which will allow Dr. Karian to poke around a bit. Jean awakes a few hours later to find out he removed one stent, only to replace it with a larger one. His plan is to use the stent to dilate the ureter and solve the problem of the polyps that keep blocking the ureter.

Back to top

November 2005

More travel this month, which means fewer Erbitux treatments – woohoo!! First a week in San Francisco, then home for a few days, followed by a 9 day trip to Costa Rica with friends. 7 days in a tropical paradise spent hiking, kayaking and traversing the rain forest. It was an incredible adventure and one that Jean and Pat look forward to repeating some day. Jean’s energy levels are pretty good because of the skipped Erbitux treatments, the Sandostatin keeps the diarrhea to 8-9 bathroom visits a day, and being able to hike up a riverbed to a 150 foot waterfall did wonders for Jean’s attitude. Unfortunately the kidney pain is still lingering and another ultra sound shows continued hyrdronephrosis in the right kidney.

Back to top

October 2005

The month began with a CT scan and an ultra sound. CT scan showed “no obvious sign of recurrence” and the ultra sound showed some lingering hydronephrosis, which Jean is aware of as her kidney throbs on occasion. In the meantime, Dr. Lange agreed to allow Jean to dictate the weeks of treatment and the time off so that she can begin to take control of her life – including traveling and gaining energy and strength. Jean takes a few brief business trips at the beginning of the month, but then prepares for a 9 day trip to Latvia, Lithuania, Estonia, Portugal and Germany. The first 4 countries are covered in 5 days, an exhausting itinerary for a healthy person, for Jean it is twice as difficult. Despite developing an ingrown toenail just before the trip, Jean gets through it and is very, very pleased with how business went and how she feels. The diarrhea was under control (or at least manageable), and despite one cancelled flight that resulted in a 5 hour bus ride from Riga to Vilnius, the trip was a success and she now feels comfortable taking on more. Immediately upon arrival home, Jean headed to the spa for a well deserved massage and the podiatrist to have the ingrown toenail taken care of. Turns out this is a side effect of the Erbitux, but not one that anyone has ever seen before.

Back to top

September 2005

The month began with a bit of excitement. A fever and kidney pain landed Jean in the hospital for a night. Turns out she had a Urinary Tract Infection (UTI) which was caused by a blockage in her ureter, also causing her kidney to expand (hydronephrosis). Dr. Karian put in a stent, put her on some antibiotics and sent her on her way. He removed a bunch of polyps from the ureter and sent them to the lab for biopsy. Results came back as “inflammation”. Jean is not concerned as her cancer does not grow inside of organs, its modus operandi is to strangle from the outside. Jean has begun planning for her first work trip in 18 months – looks like its going to be to the Baltics. 3 weeks after inserting the stent, Dr. Karian removed it and sent Jean for a follow up ultrasound. Erbitux treatments continued with the usual side effects.

Back to top

August 2005

More Erbitux treatments, more side effects, it’s a never ending cycle. The Sandostatin finally seems to be doing something so the nurses begin to talk about switching to the once a month injections which can be used after a plateau is reached with the daily injections. This sounds really good about now because Jean is tired of being one big walking bruise.

Back to top

July 2005

Another CT scan, another “clean” report. We continue with the Erbitux on the 8 week plan and the Sandostatin daily. The whole regiment is starting to wear thin. Add to the usual side effects the addition of losing eyelashes, painful sores on the eyelids, and no end in sight. Even with a two week break, Jean never gets her energy back, and realizes it’s been almost a year since she felt “good”. Brief weekend getaways are great, but Jean’s job should involve a fair amount of international travel and it’s been over a year since she’s been able to take on any of that.

June 2005

A new medication has been added to the daily regiment to try to slow down Jean’s diarrhea. It’s still in double digits and ideally we’d like to get it down to at least single digits. The medication is called Sandostatin and the plan is for Jean to get injections of it twice a day for as long as it takes to get the diarrhea to manageable level. Twice a day injections and a medication that requires refrigeration requires a little planning. Pat takes on the task of injecting Jean twice each day, but she quickly realizes that her skin bruises easily and so her arms and legs are often covered in black and blues, just in time for summer. Fortunately, however, Jean’s left leg still has nerve damage from her 2003 surgery and therefore it’s her favorite place to inject since she can’t feel anything.

May 2005

A trip to Florida at the beginning of month went well, but the diarrhea has continued and is starting to cause noticeable weight loss, lack of energy, and considerable discomfort. Jean makes some dietary changes, adds some medications (tincture of opium, codeine, lomotil) to her regular routine, all in an attempt to at least stop the diarrhea from dragging her out of bed several times a night.

April 2005

As the weeks roll on, Jean experiences new and interesting side effects, acne in the scalp and more painfully, the eyelids, and mouth sores. After a brief setback with dehydration because of the CT prep, Jean’s quarterly CT scan shows nothing new and blood markers remain stable as well. The plan is to continue forward with as many treatments as she can tolerate, with intermittent weeks off to allow the rash to subside and energy to regroup.

March 2005
Dr. Lange decides to decrease the dose of Erbitux to see if that will help with the side effects as the rash hasn’t gotten worse and the cold weather seems to make it worse.

The 8 weeks on, 2 off schedule does not work as Jean is unable to take 8 straight weeks of treatment, so a revised plan of 4 on, 2 off is agreed to.

February 2005
Since her veins have never recovered from her year of systemic chemotherapy, the nurses at Mt. Auburn suggest Jean have a port a catheter installed into her chest. This is a direct connection to her veins and will allow them to administer the Erbitux weekly without having to search for a vein.

The schedule is to administer Erbitux once a week for eight weeks, followed by a two week break. Indefinitely.

The first few treatments go well, though side effects begin to appear. A rash on the face, increased diarrhea and dry skin.

January 2005
Pat and Jean take a vacation to Curacao, where Jean’s adhesions don’t interfere with the snorkeling. The results from the labs are back and only one had any effect on the tumor. It’s decided that Jean will begin treatments of Erbitux (from Imclone, think Martha Stuart) in February.

Back to top

 

2004

December 2004
Met with Dr. Lange to discuss possible treatment options. Specimens from the tumor are sent to 3 labs to test their effectiveness. Results are due back in January. These drugs are not chemotherapies, but newer more targeted therapies including 2 monoclonal antibodies.

November 20, 2004
Surgery went well. The surgeons removed some additional intestine and half of bladder. Reconnected right ureter to new, smaller bladder. 2 week hospital stay followed by several weeks of recuperation at home.

November 8, 2004
Surgery is scheduled for November 8 at Mount Auburn Hospital. The last CT scan showed a mass growing on the bladder where the right urether connects from the right kidney. The surgeons will try to remove the tumor without damaging the bladder or urether, or losing the kidney.

October 2004
Between the two trips to Omaha, we due diligence on Dr. Loggie and the information he gave us. Xeloda is a common chemotherapy drug, and Celebrex is a very popular anti-inflammatory used for a variety of ailments. It's similar to the drug Vioxx, which recently was withdrawn by the manufacturer due to cardiac problems among some patients who took it.
   Dr. Loggie gave Jean a small prescription of Celebrex. She finds it lessens some of the pain by reducing tissue inflammation where the tumor has attached itself on the bladder.
   On our second visit to Omaha, Dr. Loggie changed his diagnosis and prognosis. His team of medical biologists examined pathology slides of her tumor. They found the tumor was resistant to flurocil, one of the chemicals in Xeloda. This means Xeloda would not be effective against the tumor. It also means the tumor cells appear to be PMCA (Peritoneal Mucinous Carcinomatosis), not DPAM. PMCA is a malignant, aggressive variant of PMP.

September 2004
After contacting three other specialists around the country, we decided to visit Dr. Brian Loggie at Creighton University Medical Center in Omaha, Nebraska. Like Dr. Sugarbaker in Washington D.C., Dr. Loggie is a surgical oncologist and a researcher, focusing solely on PMP and its treatment. He performs the same IPHC procedure, which oncologists now are recognizing as the only treatment that has an effect on this disease. He also advocates a combination of drugs taken orally, Xeloda and Celebrex to slow down, but not stop the growth of the tumor. This might reduce the frequency of surgeries, from once every eighteen months to once every two or three years.
   Dr. Loggie believes Jean has DPAM (disseminated peritoneal adenomucinosis), one variant of PMP. He doesn't believe IPHC can be performed (confirming the NIH's opinion), but he believes the Xeloda and Celebrex combo could be effective against DPAM. He agrees to take Jean as a patient only if he performs the surgery in Omaha to remove the tumor. We scheduled a follow-up visit in October. We feel more comfortable in Boston, among doctors who have done the surgery before and who we know and trust, and among our family, friends, and counselors.

August 2004
The NIH declined Jean for the clinical trial. The doctors feel IPHC would be ineffective against the tumor cells, which are embedded in scar tissue and damaged radiated tissue that the drugs will not penetrate. They also feel that IPHC would either shut down her intestinal system or cause other possibly life-threatening complications. "We don't feel there are any available treatments for your disease."

July 2004
Jean applied to a clinical trial at the National Institute of Health (NIH) in Baltimore. The study focuses on using intraperitoneal heated chemotherapy (IPHC) to treat PMP and similar cancers of the appendix and pelvis.

June 2004
Jean's most recent CT scan showed small growth on dome of liver, larger growth in pelvis. We decided not to return to Dr. Sugarbaker in Washington D.C.. We're upset with misdiagnosis, his decision not to perform intraperitoneal chemo, and his poor personal treatment of patients.
   In the past 4 years that we have been dealing with this disease, at least two dozen articles have been written and published, and more doctors have taken on treating the disease. There are now five specialists in the U.S. who research and treat this disease.

Back to top

 

2003

August 2003 - June 2004
"Normalcy." Jean returned to work in August. Both of us worked and traveled. Jean traveled for work to Thailand, Hong Kong, Philippines, and East Europe. She also planned a two-week trip to Ireland for her mother and 8 of her female relatives. They had a lot of fun.    Jean is scanned and tested every 3 months. The anxiety of each appointment makes it very difficult to concentrate on the moving on with our lives.

March 2003
Jean's ileostomy was reversed at Mount Auburn Hospital.

February 2003
We flew Jean back to Pat's parents' home in Rhode Island and rented a house on Cape Cod for the month where Jean could recuperate. Her parents came up from Arizona and stayed with her. Within 1 week of returning to New England, Jean ended up back in the hospital (Mt. Auburn) with undiagnosed diarrhea, vomiting, and dehydration. This was a sign of things to come as Jean had a lot of trouble keeping up with the output from the ileostomy and thus ended up dehydrated. Unfortunately, New England got a lot of snow that winter, and the Cape rental house was not plowed very well. We were isolated for a couple of days. Jean had to go back to Mount Auburn to be treated for dehydration. We contacted a local Cape nursing group to help with IV supplies and regular checkups.

January 2003
We both took leave of absence from work and drove to Washington Hospital Center, which is located in the northwest, urban, poor section of Washington D.C. The hospital is busier than Mass General on a bad day, somewhat frantic and impersonal. When they prepped Jean for surgery to administer the anesthetic, the nurse severely punctured Jean's arms looking for veins, which were damaged by the chemo. She wound up crying and yelling, terrified, and Pat had to calm her and insist that a skilled technician do more sensitive work. Not a good omen.
   Jean was in surgery for 5 hours. Dr. Sugarbaker came out toward the end of surgery and said that he found no evidence of "seeding"; he didn't think Jean would benefit from the intraperitoneal treatment and was confident she wouldn't experience a recurrence anytime soon. We were hopeful given his confidence but confused that he didn't perform the chemo. He reversed her colostomy and left her with an ileostomy, which was a surprise to us; we thought everything would be reconnected if he didn't perform the intraperitoneal chemo.
   Her hospital room was in a corner of the building without insulation. It was the coldest winter in D.C., with temperatures plummeting below zero. We had to beg the hospital staff to put an electric heater in the bathroom, which was frigid and mostly unusable. Pat slept in Jean's room for 2 weeks. We both have family in the area in addition to some friends, so we weren't totally isolated and had several wonderful visitors. It was a very difficult time for both of us and the close quarters did not help matters.

Back to top

 

2002

December 2002
Over the holidays, we took a two-week multi-sport adventure trip to Baja, Mexico.

September 2002
Met with Dr. Sugarbaker in Washington D.C. His method: First he performs surgery to completely clean out any visible traces of tumor. He then performs intraperitoneal heated chemotherapy (IPHC), washing the intestinal and pelvic cavity with a chemo cocktail, while the patient recovers in ICU. He doesn't have much bedside manner, and doesn't keep numbers about success rates (he doesn't do control groups, preferring to treat everyone). He agreed to accept Jean as a patient and we schedule surgery for January. He recommended that Jean get into peak physical shape, which would help her recover from the surgery.

Summer 2002
Jean recovered from her surgery and contacted Dr. Sugarbaker's office to setup an appointment to see him.

June 2002
Jean underwent surgery at Mount Auburn. They removed a growth the size of deflated soccer ball, her remaining ovary, uterus, a portion of her bowel and left her with a temporary colostomy.
   Jean's oncologist says the previous chemo regimen, used for a variety of intestinal cancers, is total ineffective against this tumor. He recommended we talk to Dr. Paul Sugarbaker at Washington Hospital Center in Washington D.C., one of the few doctors in the world who is devoted to treating this disease.

May 2002
Jean experienced pain and large weight gain in her abdomen and pelvis. A CT scan showed a large growth near her bowel. A scan in January showed this area was clear. Over five months, a tumor had grown from invisible to enormous size.

Back to top

 

2001

Fall and Winter 2001/2002
We traveled. Took a two-week trip to Ireland. We also took short trips to Paris, San Francisco, Iceland.

August 2001
We visited Boston IVF to assess our chances of having a family. IVF doctors say the radiation treatment irreparably damaged Jean's remaining ovary and her uterus, and also affected her hormones. They said it would be impossible to conceive and dangerous to try to carry a child to term via IVF. We were devastated.

January 2001 - July 2001
Jean gradually gained her strength back, engaged in more activities, and returned to work full-time. She still experienced lingering side effects from the chemo, especially diarrhea and exhaustion. Jean gets scanned and tested every 3 months.

Back to top

 

2000

December 2000
Jean finished chemotherapy. By this time she was debilitated, unable to work or be active.

July 2000 - November 2000
Jean's oncologist agreed to our request to review a newly released chemo drug (Camptosar, CPT-11) and decided to add this to the chemo cocktail. Being a much stronger drug, it becomes more difficult to receive the regular treatments as Jean's blood counts don't rebound and she gets weaker and weaker with each treatment.

June 2000
Jean underwent radiation treatment for 4 weeks. Radiation caused severe pain in her abdomen and pelvis and massive bowel problems.

February 2000
Jean started chemotherapy. The chemotherapy caused hair loss, diarrhea, nausea, headaches, and exhaustion. To retain some sense of normalcy, Jean returned to work in February and continued to work throughout most of her treatment. We turned a business trip to London into a vacation, and thus began our love of travel.

January 2000
Jean's oncologist at Mount Auburn Hospital diagnosed her with cystadenacarcinoma, a rare and aggressive form of cancer that often originates from the appendix. The cancerous cells are often encased in mucin-secreting growths. The tumors are associated with a condition called pseudomyxoma peritonei (PMP). We quickly researched the cancer at Harvard's Countway Library. Only half a dozen articles had been published over the last 20 years about this form of cancer. The disease seems to afflict only a few hundred people every year, who are usually older, and die from complications from the disease, its treatment, or from other morbid conditions.
   Despite this research, and the follow-up appointment with the oncologist, nobody had mentioned the word "cancer" to us since the surgery. When we heard it, we were in shock. The oncologist recommended immediate and aggressive treatment: several months of combinatorial chemotherapy (5FU with leukovorin) and a month of radiation treatment. He strongly advised starting right away.
   We wanted to start a family. With the loss of Jean's left ovary, we worried that radiation and chemo might damage Jean's chances to have a baby. We met with representatives from Boston IVF in Brookline. Because Jean was starting chemo so quickly, there was very little they could do: most IVF treatments (egg freezing, for instance) involved at least several weeks of time, which we didn't have. Most treatments were very expensive and had little chance of success. We decided not to pursue IVF and to focus on treating Jean.

Back to top

 

1999

December 1999
Jean went into laparoscopy at Mount Auburn Hospital in the early morning, expecting to be finished by the end of the morning. Laparoscopy revealed a large mucinous growth from appendix attached to and encasing one ovary and portions of colon, bowel, and urether. Mount Auburn's chief of surgery and several other surgeons were called in and worked on Jean for 10 hours, removing her appendix, her left ovary, and portions of her colon, bowel, and urether. After 8 days in the hospital, Jean was discharged and began her recovery.

September - November 1999
Jean experienced sharp pains in her pelvic region. Her gynecologist at Mount Auburn Hospital suggested it was a cyst and recommended laparoscopy to investigate. X-rays and CT scans showed a growth larger and more abnormal than a cyst.