“The Chronicle of Hodgkin’s”

By

Jess Sweely

I kept a journal from the time that I was diagnosed with Hodgkin’s through the completion of treatment and follow-up. This is a transcript of that journal.

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On Tuesday morning, December 18, 2007, I woke around 1:30 A.M. with pain that continued to get worse and with intermittent nausea. At 6:00 A.M. I took a shower, got dressed and woke my wife, Sharon, and said that I needed to go to the emergency room.

We drove to the UVA Medical Center in Charlottesville and checked into the ER. The wait was short, and when examined by ER personnel, the Doctor on call ordered a CT Scan. This is a computerized tomography scan that combines a series of x-ray images that are taken from different angles of your body, and using computer processing, creates sectional images of the bones, blood vessels and soft tissues inside your body.

I sensed a problem when the CT operator asked some questions that were specific and not general.

Upon returning to the ER room, the ER Doctor said that he had asked a “Medicine Doctor” to come talk with me. In the meantime they gave me some pain medication to get the pain to subside.

After many hours had passed, we still hadn’t seen a “Medicine Doctor.” Finally, at around 5:30 P.M., I said that I was leaving at 6:00 P.M. if no one had come by then. At 5:45 P.M. two young Internal medicine Doctors appeared and apologized for the delay. They said that the CT had showed a “mass” in my belly and that a biopsy was in order. They were going to admit me to the hospital and would schedule the biopsy for the next day

They found a bed in the “transplant ward” and off I went. I hadn’t eaten all day and the nurse found a sandwich for me. I wasn’t allowed to have anything to eat after midnight because of the biopsy the next day.

Around 11:00 P.M. I was told that they were going to get me ready for a chest X-ray. Later, around midnight, I was told that it would be the next day.

The next day, Wednesday the 19th of December, I was taken for the chest X-ray and was told that it was negative. Later, on the 19th I was told that the biopsy was delayed until the 20thbecause emergency room patients took priority. I thought that was odd since I had been an emergency room patient.

The 20thcame, and by late in the day on the 20th I still had not heard anything about doing a biopsy. Late in the afternoon of the 20th I told the nurse on duty that if I had not had the biopsy by 6:00 P.M. I was checking myself out and I would make arrangements to get a biopsy somewhere else. Around 4:00 P.M. the nurse told me that they were going to get me ready to go to radiology for the biopsy. They prepped me around 4:30 P.M. and at 5:00 P.M. the procedure started. At 6:00 P.M. I was finally finished. I was told that I needed to stay in the hospital until 9:00 P.M. If I had no reaction to the biopsy by then, I could go home.

I was given the name of a Doctor to call if I had any further issues.

It would take a week to 10 days to get the pathology results. Finally at 9:00 P.M. on Thursday the 20th of December I went home.

Friday – December 21, 2007

During a meeting in the afternoon, Friday, the 21st, I started to get a pain in the back on my left side. It continued to get worse until finally around 6:00 P.M. I told Sharon to call the Internal medicine Doctor, Lisa Martinez. She told us that we needed to return to the emergency room immediately.

The pain was accompanied by nausea and the sweats. Upon arriving at the ER, I was taken immediately to a room and examined. For some unexplained reason the pain subsided as quickly as it had come. The ER Doctor checked my previous CT Scan and indicated that I had an 8cm cist on my left kidney. He did not think, that this was the problem. He said that he wanted to do a heart test and that it would take approximately four hours.

Finally, at 3:15 A.M. on the morning of Saturday the 22nd of December I was released to go home. I was instructed to make a follow up appointment with Urology. I was instructed to call and arrange an appointment as soon as possible.

I also had an appointment with Oncology for the 4th of January to go over the results of my biopsy.

We had made arrangements to spend Christmas at the farm in Wellington and we decided that there was no reason not to follow up on those plans.

Friday – January 4, 2008

At 8:30 A.M. on Friday, the 4th of January, I had an appointment with Doctor Liu, a fellow in the Cancer Clinic. The news wasn’t good. The biopsy showed that I had Hodgkin’s Lymphoma, a blood cancer disease. Dr. John Densmore joined Dr. Liu and explained the disease, treatment plan and prognosis. There was a 75% cure rate after 4 to 6 months of chemotherapy and, possibly, radiation therapy. Chemotherapy would include a series of 4 drugs referred to as ABVD. There would be hair loss, possibly lung or heart damage, and possibly one would become sterile.

There would be follow up tests to determine if there was any impact on the heart and lungs. Testing would be done immediately to provide a baseline for later comparison.

A PET Scan was also to be scheduled to determine whether the disease had spread to other areas of the body. A PET Scan is a positron emission tomography scan imaging test that reveals how your tissues and organs are functioning. It is used to detect diseases before they show up on other scans.

All the tests were scheduled during the following week. The first round of chemo was scheduled for Friday, the 11th of January 2008.

Tuesday – January 8, 2008

The urology appointment was scheduled for Tuesday the 8th , with Dr. Noah Schenkman. He found that I did not have any kidney stones and that the cist should not be an issue for the treatment of the Hodgkin’s. He had no idea what had caused the pain, but if it reoccurs call.

Later on the 8th , I also had an appointment for a PET Scan. I ate lunch and went for the scan. When they found that I had eaten they had to cancel the scan. They were to have sent instructions that said “no eating for 6 hours before the scan.” The scan was rescheduled for the next day.

Wednesday – January 9, 2008

On Wednesday the PET Scan was scheduled as well as the baseline heart and lung tests. a MUGA and a PFT test. A MUGA test is a multigated acquisition scan. It is a non-invasive, diagnostic test, used to evaluate the pumping function of the heart ventricles (lower chamber of the heart).

The PFT test is a pulmonary function test. It is also a non-invasive test that shows how the lungs are operating. The results of these test become a baseline to compare further tests at different stages of the chemo process.

This had been a busy day, running between the main hospital and the West Wing.

Friday – January 11, 2008

The morning started early, with an 8:30 A.M. appointment with Dr. Liu and Dr. Densmore. The result of the PET Scan was good. The cancer had not spread. The MUGA and PFT tests were also positive. All systems were a go for the beginning of chemo.

Dr. Liu advised about possible side effects of the chemo, particularly infertility, but he said that there was a sperm bank available. I told him that wasn’t a concern since I was going to be 70 in a few months. Sharon laughed and said we were done with that. He also explained the first treatment and what was to occur.

We went to the infusion center around 11:00 A.M. and by 12:30 P.M. the first chemo treatment began. The treatment took until around 6:00 P.M. The staff in the infusion center was very competent and compassionate. They explained the process in detail. They administered an anti-nausea drug before the process started, and Tylenol and Benadryl were inserted into the IV when the process began. A sandwich cart came around and I was able to get an egg salad sandwich while Sharon was told that she would have to go to the cafeteria to get something to eat. Food was provided to patients but not their companions.

The chemo was a regimen of drugs referred to as ADVD. Adriamycin, Bleomycin, Vinblastine and Dacarbazine. Some side effects included: nausea, vomiting, loss of appetite, degradation of white cells, hair loss, mouth sores, heart damage, lung damage and constipation. As Dr. Liu said, “ if the treatment doesn’t kill you, maybe it will cure you.”

I was given a prescription for anti-nausea and told that I may not sleep well for the next few days.

The treatment appeared to go well, and I tolerated it as well as could be expected. I didn’t have any nausea or vomiting but I was tired. I hoped that the remaining treatments went as well.

My blood sugar readings were severely affected by the chemo. I contacted Dr. Martin Abrahmson at the Joslin Diabetic Center in Boston to discuss my recent diagnosis and the impact on my diabetes. We scheduled a follow up call the week of the 14thof January. A blood test was scheduled for January 18th and my next chemo was scheduled for January 25th.

Monday – January 21, 2008

I received a call from Andre Duggin today wishing me well and telling me that he had a positive PSA test and was considering having the robotic operation performed in New York. I wished him well. It appeared we both had a battle before us.

Dr. Liu called to see how I was doing. He indicated that the blood work last Friday was good. I told him that I was feeling bloated and my taste was off. He indicated that I might need an anti-acid and that he would follow up.

Tuesday – January 22, 2008

Dr. Martin Abrahmson called to check on my blood sugars and decided to put me on novolog insulin, in addition to my metformin, in an attempt to control my blood sugar highs. I started that regimen at dinner.

Wednesday – January 23, 2008

Today I called Kevin Conley, Chairman of the Board of Trustees at the Joslin Diabetic Center, to advise him that I would not be able to attend Board Meetings and Committee Meetings, for at least the next 6 months, and that I recommended that he try to find a replacement for me because of my current situation. I had decided that it would be best if they could find a replacement for me.

Friday – January 26, 2008

Today I had my second chemo treatment. Blood work began at 10:30 A.M., then I met with Dr. Liu and Dr. Densmore. Infusion began around 1:30 P.M. and lasted until 4:45 P.M. The process wasn’t too bad and I had another egg salad sandwich.

My blood work showed that my white cells were low. Sharon drove home as I didn’t feel up to it.

Saturday – January 27, 2008

I woke tired, took a nausea pill, and didn’t do much all day.

Sunday – January 28, 2008

I slept in Sunday morning and did some work at the office later in the morning . I noticed that my hair was starting to thin.

Friday – February 1, 2008

I was able to have my primary care physician, Dr. Calhoun, do my weekly follow up blood tests in the Forest Hills office of UVA. I also had a dry cough. Dr. Calhoun called Dr. Densmore and after consultation I was put on an antibiotic as a precaution. Later that day Dr. Liu called to say that the blood results were good.

I had also lost 11 pounds since I had started chemo, a result of my appetite being depressed.

Tuesday – February 5, 2008

I still have a cough, but no fever, and my energy level is low.

Friday – February 8, 2008

I was scheduled for chemo, but it had to be postponed because my white cells were too low. Chemo was rescheduled for next Friday.

Friday – February 15, 2008

Chemo went well today. It started at 12:30 P.M. and I was home by 7:00 P.M.

Tuesday – February 19, 2008

I hit the wall today. I was tired and had a touch of nausea. I quit work at noon and rested the rest of the day.

Wednesday – February 20, 2008

I felt somewhat better today, but still not 100%.

Monday – February 25, 2008

I decided to start an exercise program again. I started with 30 minutes on the treadmill at a moderate pace. Will try to do this daily.

Friday – February 29, 2008

Today was chemo again. My white cells were very low again, but the Doctor decided to go ahead anyway. They decided to start me on a regimen of neupogen shots to increase the white cells. I would have to come into the main hospital, West Wing, as it would require someone in the infusion center to give the shot. They are scheduled for next Monday, Tuesday and Wednesday. The purpose of the neupogen shot was to assist in fighting off any disease, since the chemo adversely affected my immune system.

Saturday – March 1, 2008

I took it easy today. Feeling ok.

Monday – March 3, 2008

Went in for my first neupogen shot in an attempt to build white cells. Also have to come in tomorrow and Wednesday. Still feeling somewhat tired.

Wednesday – March 5, 2008

The last few days were difficult. Feeling tired and bouts of nausea.

Friday – March 7, 2008

Felling somewhat better but not 100%.

Saturday – March 8, 2008

We decided to go to Florida farm in Wellington for a few days, while Robin attends the Wine Executive Institute Program being held by UC Davis in Sacramento, CA. It will be good to get away for a few days. We will be dog sitting and relaxing.

Monday & Tuesday – March 10-11, 2008

Feeling a bit tired but weather is great. Nicolo and Thomas Kohler stopped for a visit on Tuesday. This was a pleasant surprise and we talked wine and horses.

Thursday – March 13, 2008

We returned to Virginia today, as I have chemo again tomorrow. Thank goodness for Flex-Jet.

Friday – March 14, 2008

The first shot was successful. White cells looked good, over 6.3 compared to last test at .25. It appears that the shots are working. Finished chemo early today at 3:30 P.M.

Saturday – March 15, 2008

Felt good this morning. The neupogen shots seem to be working.

Sunday – March 16, 2008

Feeling a little nausea this morning. Took a nausea pill and now off to do some work at office.

Friday – March 21, 2008

Blood results from last week not so good.

Friday – March 28, 2008

Chemo today. This is considered the end of the third cycle. My white count was low again. Neupogen shots are scheduled for Monday thru Wednesday of next week.

Friday – April 6, 2008

Starting to feel a little better. The week after chemo has been difficult. Saturday and Sunday after chemo is always difficult, and then you start to feel better, and then it is time for chemo again. Had another blood test on April 4th, but no results yet.

Watched Carolina basketball last night. It was a disaster. They forgot to come to the game.

I have been doing additional research on the drugs ABVD, which are considered the gold standard for this type of cancer. The treatment was developed in Italy in the 1970’s. The standard treatment is 6 to 8 months. 93% of cases are curable to the point of remission. I hope I fall into that percentage.

Monday – April 9, 2008

Received a call from Dr. Liu. The blood work last week was good but they have decided to continue the neupogen shots as a precaution.

Thursday – May 1, 2008

Had chemo last Friday and since then the week has gone as normal, tired and weak. Hopefully I will start to feel better in a day or so. Next Tuesday I have tests to determine if chemo has had a negative effect on my heart and lungs.

Also they are going to do another CT Scan to determine if the tumor is shrinking. Hopefully everything is going in the right direction.

Tuesday – May 6, 2008

Spent all day at UVA Health having tests to determine if chemo is helping. Had a PFT, CT Scan and MUGA test. Will get results on Friday , April 9th when I see the Doctor and have the next round of chemo. Hoping for the best.

Friday – May 9, 2008

Today is treatment day, and results day. MUGA results not in and PFT results are worse than baseline. This was apparently expected as chemo affects the lungs.

The CT Scan showed the tumor at half of its original size. Good progress, but I think that the Doctors were hoping for more shrinkage. A PET Scan will be done again in about two months, and that scan will show more details than the CT. They indicate that the mass may not totally disappear but that the hope that it will die. Again, we hope for the best.

Chemo went fine.

Sunday – May 25, 2008

Today is the Welters’ Memorial Day Outing. Decided to go for an hour, so that I could see some of the “AmeriChoice” folks. Was very tiring. We didn’t do our barbecue on the Saturday before as this would be too much. Will reconsider next year.

Wednesday – June 4, 2008

This appears to be a good week. More energy and I can work most of the day. We start all over again on Friday, with chemo, and then the process repeats itself.

Friday – June 6, 2008

Saw Dr. Liu before chemo treatment started. They have decided to remove the drug Bleomycin from the ABVD regimen of drugs, as it appears to be having an adverse impact on my pulmonary functions. At this stage in the process, they don’t believe that removing it will have a positive or negative impact.

The current plan is to continue chemo through August. The first week in July, I will have a CT Scan and a re-evaluation will be made of the results to date. We hope for the best.

Monday – June 16, 2008

I am feeling pretty good today but then this is normal as this is the beginning of my good week. I haven’t noticed any issue with dropping the Bleomycin from the chemo regimen. Maybe next week we will see a difference. Time will tell.

Wednesday – July 2, 2008

Received a call from Dr. Liu this afternoon telling me that the results of the CT Scan were good and that he was going to schedule me for another PET Scan.

He is also going to cancel any further chemo treatments until after the PET Scan. After the PET Scan, they will make a final decision on further treatment. They want the chemo to be out of the body for at least 4 weeks in order for the PET Scan to be effective. Radiation could be the next treatment plan, depending on the results of the PET scan.

Tuesday – July 15, 2008

The Pet Scan is scheduled for Monday, July 21st at 10:00 A.M. with a follow up with Dr. Liu on Friday the 25th of July at 11:30 A.M.

I feel 100% better without the chemo. I am hoping for best next week.

Friday – July 25, 2008

Today is the follow up with Dr. Liu for the results of the PET Scan.

The good news is that the PET Scan showed no activity in the tumor and as a result they are stopping any further treatment as the cancer is in remission. This was the news that we were hoping for, but were not sure we would get.

For the next two to three years, I will have Doctor visits every three months and CT Scans every six months. This is a precaution, so that if it does rear its ugly head it will be caught early.

So for now “Happy Days.”

Monday – January 19, 2009

Tomorrow is “D” day. My first CT Scan since chemo treatments were halted. Friday, I will get results. Hope all goes well.

Friday – January 23, 2009

Scan was fine. All well so far.

Monday – June 22, 2009

Another CT Scan scheduled for today with results on Friday.

Friday – June 26, 2009

The results of the scan were fine. I have been in remission for 1 year. I have a follow up appointment scheduled in three months, and another scan in 6 months.

All follow up tests were good.

Friday – October 1, 2010

Dr. Liu is off to a new position at UNC –Chapel Hill. Best wishes to him. He has been great through all of this. My new Doctor is Dr. Kelly Davidson. I will have another CT Scan this month. It will be two years and a critical time.

Wednesday – October 20, 2010

Today I had my first appointment with my new oncology Doctor, Kelly Davidson.

I had a CT Scan on Monday and the results were good. I am still in remission. There are some polyps in my lungs . They couldn’t fine the baseline PFT test to compare. She doesn’t believe it is a serious thing.

My next appointment with her is in 6 months and in a year another CT scan.

Monday – October 4, 2011

I am scheduled for a follow up CT Scan later this month, and also another appointment with Dr. Davidson. I am somewhat apprehensive, but again we hope for the best.

Results were good again. No sign of any change in the tumor. I am still in remission. Next appointment in six months.

Friday – May 22, 2020

All tests were stopped early in 2012. It has now been almost 12 years since I started this journey and I have been one of the lucky ones. I am still in remission, and am forever thankful for the staff at the UVA Cancer Center. They are my hero’s.

I also have to thank my best friend, my life companion, my wife, Sharon, for her positiveness throughout this whole process. From Day 1 she said that “we will beat this” and she meant it. She was by my side every step of the way, in the good days and the bad days. There is no way that I could have endured this without her cheerleading the process. Thank you from the bottom of my heart.