My Journey

Note: These are excerpts from Terri's journal that she originally published online in early 2012. It was Terri's hope that her story would encourage others who walk a similar path.

Diagnosis - July 20, 2008

At 1:00 a.m. on my sixth wedding anniversary I was in the emergency room at Southwestern Vermont Medical Center in Bennington, VT. I had just received a diagnosis of cancer, but the doctor was unsure whether it was ovarian, stomach or colon cancer.

My husband, Robert, was in Montana starting a new job and looking for a house. We were in the middle of a move across the county that had been several years in the planning. My twin sister had brought me to the hospital that night after weeks of abdominal bloating and pain.

I spent quite a while in the emergency room that night because the hospital was full and they had no beds available. Several family members came to see me in the emergency room, including my two sons, Michael and Tim. Finally, I was admitted to ICU since there were no other beds.

Robert was able to catch an emergency flight out of Billings, Montana when the airport opened later that morning. He arrived in Bennington at 6:30 that evening.

Paracentesis - July 21, 2008

An ultrasound of my abdomen showed considerable ascites (fluid). The oncologist, Dr. Orion Howard, said I would need to have the ascites drained from my abdomen. This is done with a procedure known as paracentesis.

My favorite nurse, Gretchen, and Robert accompanied me during the procedure. The procedure hurt quite a lot. They drained nearly three liters of cappuccino-colored fluid from my abdomen. My abdomen felt better after the procedure though, with the fluid gone.

Dr. Howard was in tonight and said I had Stage III ovarian cancer. (Note: I would later be re-classified as having Stage IV cancer.) I felt as though I were in a dream and could not wake up.

Home - July 22, 2008

I was discharged from Southwestern Vermont Medical Center today. I arrived home at 9:00 p.m.

I had a crying spell today, but I try to stay positive. I pray that I will not have these spells.

Albany - July 23, 2008

I am nauseated and weepy today. I have an appointment with Dr. Morrissey, a gynecologic oncologist, in Albany tomorrow morning. Hopefully they will perform surgery soon after. Dr. Howard has said I would benefit from having a hysterectomy and debulking surgery, followed by chemotherapy.

The Albany doctors will not even see me for an office visit without a $400 deposit toward the bill. I will be applying for Medicaid, but it will take time to be processed. Robert would have had benefits at his new job on August 1 had I not become sick. A family member loaned us the money for a deposit at the gynecologic oncologist's office. We will repay that when the Medicaid goes through.

Robert has been by my side every day. He is very patient and wonderful with me.

Nausea - July 24, 2008

I went to see Dr.Morrissey at 10:00 a.m. today for a surgery consultation. My lymph nodes are too swollen, and the cancer too advanced, for surgery. I will need three doses of chemotherapy before surgery.

The doctor was very rough. He was not very kind. I felt that this medical office was not very patient oriented. I was very upset by my experience here and will not allow them to treat me further.

The gynecologic oncologist in Albany wanted to admit me to St. Peter's hospital in Albany because I was so sick. He changed his mind when I told him I did not have medical insurance.

I was vomiting today because of potassium supplements that were prescribed for me. We called Dr. Howard and got something for the nausea. I have an appointment on the 28th. Hopefully I will be able to do chemo.

Thoracentesis - July 25, 2008

Nausea and vomiting again this morning. We went to social services to apply for Medicaid for the hospital bills. I got sick while I was there. Robert called Dr. Howard's office and spoke with his partner, Dr. Ives. She said to go to the ER at Southwestern Vermont Medical Center.

The ER administered IV fluid and Zofran for the nausea. They also did a chest x-ray while I was there. I had more fluid in the pleural space around my lungs. 2.300 cc was drained from one side with a procedure known as a thoracentesis. The thoracentesis was very painful and I felt as though I could not breathe. I was very frightened during the procedure.

I was admitted to the hospital again. This was the first night alone since I was diagnosed. Robert went home tonight. I didn't sleep well. The guy across the hall in the hospital was loud.

Obstruction - July 26, 2008

Nausea and vomiting again today.

Dr. Howard was in and said he thinks I have a bowel obstruction from the tumors.

Chemo - July 28, 2008

Nausea and vomiting continue to be a problem. It is like morning sickness.

Today was my first chemotherapy treatment. I had been admitted to the hospital again because I was so sick, so my first chemo treatment was done inpatient.

The first hour of chemo went well. Dr. Howard ordered all kinds of drugs to help with reactions.

The third hour of chemo did not go well. I had a reaction to the second chemo when they tried to administer it IV. I saw spots, my face was all flushed, my face was red, I felt all warm inside, and my blood pressure shot dangerously high. The nurse stopped the chemo and gave me normal saline IV for a half hour. I finished my first chemo treatment at 8:30 p.m. - an all-day affair.

Tired - July 29, 2008

I am very tired today, but I can go home. I have lots of aches and pains; sore throat and sore mouth.

I finally made it home at 6:30 p.m.

Sick - July 31, 2008

I have been feeling terrible since being home. I want to go back to the hospital. I have been dealing with lots of nausea and vomiting. People keep coming and going though.

Thank God for the small things.

Staging - August 4, 2008

Dr. Howard told me today that my cancer was Stage IV. I am still staying positive and I can fight to have this surgery, even though the doctor in Albany does not want to operate.

Nausea and vomiting continues to be a problem. I used Zofran at the maximum dose each day to help control vomiting.

Over the past few weeks we have been blessed with donations and support from several area churches and members of the community.

Hair - August 6, 2008

My sister, Tammi, and I went to Look Good... Feel Better at Southwestern Vermont Medical Center. We had fun, laughed, and made new friends.

I tried a wig, but gave it back. I did not like the wig.

Bored - August 9, 2008

Robert woke me up at 6:00 a.m. while I was sleeping on the couch. I was hollering and crying.

I am having an awful lot of pain. My stomach is in pain.

A lot of people are on vacation, so I am bored. I went outside for a few minutes, but had to come back inside when I started feeling sick.

I am afraid to leave my house.

Pain - August 10, 2008

Nausea and vomiting again today. The pain in my abdomen is unbearable.

Robert is working on filling out a disability application for me.

Home - August 13, 2008

We went to Bennington, VT yesterday. Not a bad day. We stopped at Hannaford (grocery store). I needed to get out. I don't know why. I would like to stay home. I guess I feel safe at home.

I am losing my hair. The top of my head is very sore.

My boys sat with me today for a while so Robert could go to Saratoga for errands.

Snarls - August 17, 2008

The past few days have been weepy days, with lots of nausea.

Robert brushed my hair to get out the snarls. It is falling out and tangling as it does.

College - August 21, 2008

The boys came down and visited today. They wanted to spend the night since they were leaving for college soon.

I was supposed to take Tim out to college, but will not be able to because I am too sick to travel.

I have lost 40 pounds in the month since I was diagnosed.

Montana - December 31, 2008

Chemotherapy was quite successful and the cancer responded well to treatment. Nausea and vomiting continue to be a problem, but are somewhat easier to manage. The partial bowel obstruction has resolved thanks to the chemo successfully shrinking the tumors.

In November we finally undertook the move that had been in the works since before I was diagnosed. We moved from Upstate NY to Montana.

The move was done for family reasons - to be closer to Robert's kids for a few years. Billings Clinic recently had a gynecologic oncologist join their staff - Dr. Gibb. He came to Montana from St. Louis where he practiced and taught gynecologic oncology. Dr. Howard talked with Dr. Gibb in advance of our planned move and Dr. Gibb agreed to perform the debulking surgery that the doctor in Albany, NY refused to perform.

I had surgery right before Christmas, and was home for the holiday. Two full cycles of chemo will follow surgery to hopefully clean up any remaining cancer cells.

Clot - March 30, 2009

Surgery was successful and went better than expected. Dr. Gibb found less cancer than he had anticipated. Recover went well, though I did have some trouble with my blood pressure in the hospital after surgery.

I ended up having my first blood transfusion. The transfusion stabilized things, but I nearly ended up back in the OR since they thought I was bleeding internally.

Surgery was followed by two full cycles of chemo to clean up remaining disease.

I ended up in the emergency room earlier this month for shortness of breath, along with back, shoulder and neck pain. Robert was concerned I might have been having a heart attack. I was diagnosed with a pulmonary embolism - a blood clot in my lung.

The pulmonary embolism resulted in another hospital admission for IV heparin to dissolve the clot. I needed to go on Coumadin for six months to prevent more clots.

Ranch - October 1, 2009

Robert was offered a caretaker job on a ranch in Lodge Grass in July. Lodge Grass is on the Crow reservation. Robert worked there through the fall, and I helped with gardening, the pool, and some household things in the main house.

We are making plans to visit family in Upstate NY this month, before going to Georgia to see my son graduate from Army Basic Training.

I was finally able to get off Coumadin. My hair is also growing back, I have a good tan from being outside this summer, and my strength is improving from exercise.

Brain - December 1, 2009

The visit to Upstate NY started off as planned, but ended quite differently than planned. The trip to Georgia had to be cancelled altogether.

During our visit in Upstate NY my eye began acting funny, and I thought it was due to allergies. Over the course of several days it worsened, eventually not closing or blinking. Once again, I ended up in the ER at Southwestern Vermont Medical Center.

The ER doctor thought I had Bell's palsy, possibly triggered by Lyme disease since I had been dealing with ticks all summer on the ranch. He ordered a CT scan of my brain "just in case" though, because of my history of cancer and blood clots.

The CT scan showed "something" on my brain stem, but the radiologist at that hospital could not tell if it was a blood clot or a tumor. The doctor put me in a paramedic ambulance and transferred me to Dartmouth-Hitchcock Medical Center in Lebanon, NH immediately.

The neurosurgeon at Dartmouth who met us in the ER there confirmed that I had a brain tumor embedded in my brain stem. I was admitted to a their Neuro-Special Care Unit while I waited to see the head of neurosurgery the following day.

Dr. Erkmen, my neurosurgeon at Dartmouth, ordered an MRI of my brain and later told me that I had at least five brain tumors. My ovarian cancer had metastasized to my brain. The largest and most immediately concerning brain tumor was embedded in my brain stem. This tumor was "immediately life threatening." Dr. Erkmen recommended surgery to remove as much of the tumor as possible, followed by radiation therapy to shrink the remaining tumors.

I wasn't nervous as I prepared for brain surgery. I could feel God next to me the whole time. I was very upset that I could not go to Georgia to see my son graduate from basic training though.

On October 27, I underwent brain surgery. Dr. Erkmen was only able to partially remove the brain stem tumor after more than ten hours of surgery. He told Robert afterward that my prognosis was very poor.

I spent several days recovering from surgery before I would even allow visitors at the hospital. Only my husband was there. I didn't feel like visiting. My head hurt and I did not want to visit or talk. When I did talk I would vomit.

Following brain surgery, I had three weeks of whole brain radiation therapy in an attempt to shrink the brain tumors. I was terribly tired during radiation, and also dealt with nausea, vomiting and constipation.

Once radiation was complete it was time to wait. It would be several months before I would know if the radiation treatment was successful. We returned to Montana with plans to follow with the radiation oncologist and neurosurgeon at Dartmouth in three months - or sooner if needed.

Liver - August 1, 2010

After returning to Montana for Thanksgiving 2009, I had to resume chemotherapy treatment in Billings. The cancer had not only metastasized to my brain, but was also active in my abdomen.

I went through several chemotherapy drugs this time before finding one that would work. Meanwhile, the cancer spread in my abdomen and metastasized to my liver.

The third chemo combination that Dr. Gibb tried did work. Finally, the cancer was responding again to treatment. Doxil and Topotekan had done little to nothing and the cancer continued to spread, but it was a carboplatin regimen that finally controlled the cancer once again.

Unfortunately, Montana is one of those places that is decidedly hard to get in and out of by any means. Montana is also in the middle of a five-state radius that lacks a level one hospital - and neurooncology. In other words, needed neurooncology care is not available anywhere in Montana, and traveling to New Hampshire is expensive and difficult. The nearest appropriate care to Montana is in Seattle, Denver or Rochester, MN.

This lack of care, and difficulty getting back to NH, is something we need to address. Asking questions about neurooncology in Billings results in blank looks from the medical staff.

Dartmouth - April 25, 2011

January found us heading from Montana to Rochester, MN by way of Upstate NY. Tired of the lack of answers about neurooncology, and frustrated by the financial difficulties involved in going back to New Hampshire for neurooncology, we decided to try Mayo Clinic in Rochester, MN.

Mayo took some effort to gain acceptance, but it is a top hospital and would be able to handle my cancer. It is also close enough to Montana to make occasional visits a possibility. I wanted to squeeze in a visit to NY before settling down in Minnesota though, so we left Montana in mid-winter with an old pickup truck loaded with our belongings.

The trip to NY was relatively uneventful, despite brutal cold in the midwest and snow in the northeast. We arrived safely.

Never dull for long though, our engine failed in the truck while we were in NY. Worse, we were unable to find a replacement engine. The truck was just old enough and had an uncommon engine. We were left with the choice of taking a bus to Minnesota in the dead of winter and trying to survive without a car - or coming up with another plan.

We ended up going with another plan. We were able to transfer to Dartmouth-Hitchcock in New Hampshire where had received my initial brain surgery and radiation treatment. Dartmouth is only three hours from where we were visiting family in Upstate NY.

The neurooncology staff (and related disciplines) at Dartmouth were able to answer the questions and address some problems I had been experiencing. I felt the gynecologic oncology staff gave up on me before they met me though. I felt as though they were just letting me die because they had already decided in advance that I could not be cured.

Initially I thought it would be nice living in the Upper Valley area near Dartmouth because I might see family and friends more often than I had in Montana. It turned out to not be any better than Montana though. I didn't see people too often unless I went to NY, but I was too sick to travel often.

Billings - August 22, 2011

I celebrated Easter in Montana. After a few months of appropriate neurooncology, but frustrating gynecologic oncology, I decided to return to Montana. It seems that I like the neurooncology in New Hampshire, but the gynecologic oncology in Montana.

From April through July I was in "clinical remission." Unfortunately, while the CT scan in July showed no disease, a CT scan in August showed liver metastases again. I started back on chemo in early August.

Within a few days of starting chemo I ended up hospitalized for nine days for pain management and nausea control. The liver pain was bad enough that my old oral pain medications were no longer effective. I left the hospital after nine days on heavy doses of oxycontin with dilaudid for breakthrough pain. At least my pain was controlled.

Chemotherapy will continue now that my pain and nausea is better controlled.

Hallucinations - December 20, 2011

December has been a living nightmare. A group of people at the hospital were assisting me with pain management because of terrible pain from liver disease. The hospital staff repeatedly increased my narcotic dose over the period of about a month. I ended up experiencing frequent hallucinations triggered by the medication.

It was not until we complained enough that the doctor ordered a new CT scan of my abdomen that they learned my disease had been improving against their expectations. They had been increasing by medication unnecessarily while assuming I was dying. They were surprised to see the disease had improved.

I quit taking the medication almost cold turkey following a more-or-less involuntary hospitalization. My doctor and PA pressured me to go into the hospital even though I did not need to be admitted. My husband was very opposed to this admission, and ended up in more than one heated exchange with the doctor and PA. Finally, I insisted on being discharged and my husband took care of me at home.

I really thought they were my friends. This is why this situation hurts me so bad.

Ultimately, we believe the medication triggered the hallucinations. Conversations with my neurooncologist in New Hampshire (who I cannot afford to see in person right now) lead us to believe that I have a chemotherapy and radiation toxicity that is aggravated by any mind-altering medication. Billings Clinic tried to tell me I have a psychiatric issue, but my doctor who specializes in this area said it is consistent with long-term toxicity from radiation and chemotherapy.

We continue to consider how best to access appropriate health care that can handle all of my health needs - instead of just some.

65 - January 22, 2012

The past month I have continued chemotherapy. My last CA-125 (tumor marker) dropped from 96 to 65. Normal at this lab is considered to be less than 30. My oncologist plans to continue chemo for two full cycles after my CA-125 has normalized. I hope that this will be in the next few weeks. I will be off chemo by spring time if that happens.

The hallucinations have settled down. They appear to be caused by radiation and chemotherapy toxicity aggravated by medication. Any time I take any mind-altering medication I have hallucinations. This medication can range from almost any pain medication to something as simple as benadryl that is administered before chemo.

My neuropathy continues to worsen with each chemo treatment. I frequently need to use a walker to avoid falling. I have had several falls in the past two months. One fall required an ambulance trip.

Growing - January 23, 2012

My relationship with the Lord has grown in the past two years. I grew up in a Baptist church in Upstate NY all my life. My husband is from a family with a line of clergymen. I have believed that Jesus was real all along, but I believed in the rapture, so if I didn't go the first time He would take me the last time around.

After I was diagnosed with cancer my outlook to the Father was very different. I take things more serious. I want a relationship with the Father. It is an awesome feeling.

I would not give up this part of my life for anything. I feel that I was dealt this and I will fight this fight with my Heavenly Father. God was telling me to slow down and look at Him.

I have enjoyed my walk with my Father. Jesus is always with you and don't forget it. Jesus loves us all. He is walking with us all. I am always talking to the Father. God is so good. Please go to Him. He loves you. I pray that my walk with the Lord will reach all who will listen.

Grammie - January 25, 2012

I had chemo today. It went well.

Robert stayed with me.

It was a sad evening. Grammie passed away and we can't get there.

I am very sad.

61 - February 7, 2012

Went to doctor appointment and the exam went well. I requested a CT scan because of abdominal pain.

My CA-125 is still going down. It is 61.

My CT is next month.