Blood clots, relapses, chemotherapy, stem cell transplant, radiation, maintenance chemotherapy... I guess it's okay that I'm still tired.
My immune system turns two years old today, and it's finally time to share the rest of the story. I wrote a lot about cancer the first time, but kept things quieter during round two. This fills in a lot of the gaps, and how we watched my cancer slowly come back, even before it could be diagnosed. But the tone of this post isn't supposed to be depressing. My message to you is enjoy every good day, chase your dreams, and get outside.
My cancer is not rare, but my situation with it is. I was diagnosed with relapsed Hodgkin lymphoma, six years after I completed chemotherapy. Since I had made it past the 5-year mark, my case is considered rare, as one doctor told me, this only happens in one percent of the patients.
When you are diagnosed with Hodgkin lymphoma, the majority of patients are told, “Don’t worry, this is the best kind of cancer to have.” I was told that by the ear, nose and throat specialist who diagnosed me in September of 2008 after two years of misdiagnosis. I had been told that I had asthma, that the pain was from ehrlichiosis, a tick disease, and that same ENT specialist told me the lumps in my neck were from my wisdom teeth, and to have them out. Needless to say, I was relieved to finally have a diagnosis and an explanation for why I felt so terrible.
I switched hospitals when the first oncologist would not give me a port. From there on, my case was textbook. I did 12 treatments of ABVD, from October 2008 through April 2009. I had a PET scan in February 2009 (on Friday the 13th) that was clean, and finished the treatment. I did not want radiation, but they could not have done it anyway, as the only tumor she wanted to radiate was pushing on my heart and lungs (the asthma misdiagnosis), making it impossible to radiate. The chemotherapy was rough, for the first three days, I wished they had taken me out back and shot me, but then things would get better. I would start walking my dog again, and by the end of the two weeks, I would be riding my horse.
Things were going well. I continued to have clean scans. In April of 2014, I noticed that my left ankle was swelling. I had rolled it on a rock, and my brother’s horse had stepped on my foot hard. I attributed it to that, but it kept getting worse, and my calf was swelling. Then, I did a 25-mile ride with my horse on Saturday, May 3, 2014, and the next morning, Sunday, I woke up and my thigh was swollen too.
I called my primary care physician Monday morning. I saw an APRN in her office, who sent me down to the local hospital for an ultrasound, looking for a blood clot. The hospital sent me back to my doctor’s office, where the APRN told me they had found a mass near my uterus, and that my cancer was probably back. Honestly, that was one of the worst days of my life.
The next day they did more tests, and discovered that it was probably the fibroid on my uterus. Somehow, when they had moved offices, they must have lost the part of my medical record that listed that, and I had forgotten all about it.
In the ultrasound, they did find some enlarged lymph nodes in the left groin area though, so referred me back to my cancer center for follow up. At this point I had made it five years, and was angry and frustrated with the primary care doctors. The tumor board at UConn Health met on my case, and decided to do a biopsy, as that was standard procedure and due diligence. I had the biopsy of the left groin lymph node that was swollen in May 2014, and it came back negative – no evidence of disease.
However, my left leg was still swelling. And, it was getting worse. My fibroid had grown from the time it was originally found, during my CT and PET scans for my cancer treatment. I wondered if it was sitting on a vein, and restricting blood flow. The oncology gynecologist did not agree with my theory, but said that it was really large, and needed to come out if I ever wanted to have a baby or just leave more space inside.
I am an active equestrian, so put off the surgery as we were in the middle of ride season. I went to a five-day endurance ride (different rides every day) over the 4th of July weekend. The two days I competed, after I rode, my leg was so swollen that I had to lay on a cot with the leg propped up on the horse trailer to drain the blood out of it. I was in pain and uncomfortable in the compression stockings. I called the hospital and scheduled the surgery. In late July of 2014, I had the myomectomy to remove the fibroid. I felt like I had been cut in half. It took longer than I expected to recover. I cancelled a 25-mile ride entry in the middle of August.
I called my primary care physicians office again and told them that I wanted another ultrasound, that they were missing something. I went in for the ultrasound, and this time they used two wands instead of one. The doctor said that I was fine and I could go home. I always request a copy of all of my results, so went back at the end of the day to pick up a copy of the radiologist report from the hospital. I had not heard from my doctor’s office at all. I read the report, and it stated that I had a blood clot in my greater saphenous vein that went from my hip to my knee. The next morning, I waited until nine in the morning, and then called my doctor’s office, and requested that someone review my radiologist report with me. They started reading it, and said, oh my goodness, you have a blood clot, and you need to come back in. I was frustrated that I had to be my own advocate on this so much, but glad we finally might have an answer.
They started me on warfain, and also gave me lovenox shots to self-inject until we could find the correct dose for the warfain. I started going to the office regularly so they could check my blood levels. I was removed from the lovenox. I was going to go to a ride the first weekend in September of 2014, but was in so much pain, that I was only comfortable sleeping on the floor, with my legs up on the bed, keeping the swelling in my leg down. It seemed odd that this was still happening, even with the blood thinner.
I called and made another appointment with my primary care physician, and told them they were still missing something. They sent me for an MRI, and discovered three more blood clots in my pelvic region, and one in my inferior vena cava. At this point, I took control of medical decisions away from my primary care doctor, and called my oncologist, as Hodgkins is a blood cancer, and she is a hematologist. She took me off of the warfain, and put me on the lovenox, so I gave myself shots twice a day. I went back in December for a follow up, and the leg was still giving me some trouble with swelling, but not consistently. We upped the dose slightly, and scheduled another appointment for March 2015. At that appointment, she would take me off of the lovenox, and things could get back to normal.
In February, ironically, on Friday the 13th, I had a glass of wine, and the tell tale pain was back in my left seat bone, where the cancer had stopped the first time. I am one of 10% of Hodgkin lymphoma patients that have pain at the tumor sites when consuming alcohol. Then, I went to Arizona for Young Dairy Leaders Institute, and was so sick and miserable. My leg was swelling out of control. I got home on March 3rd, and went to see my oncologist on March 11, 2015. The first thing she said when she saw my leg was, “shit.” I knew that was not a good sign either.
We did a repeat MRI. On the MRI from September 11, 2014, all of my lymph nodes were normal sized. On the March 2015 MRI, I had enlarged lymph nodes in the left hip area. They were not easily accessible; being behind the bone, so my oncologist ordered a PET scan. She wanted to see if anything else lit up that would be easier to biopsy. Only the lymph nodes from the MRI lit up on the PET scan, so a needle biopsy was ordered. It was painful despite the anesthesia, and at one point he hit my hipbone, and bent the needle.
On Friday, April 17th, my oncologist called and said that my cancer was back. We were doing more chemo, and a stem cell transplant. She asked if I could come in on Monday, I thought she meant for an appointment, but she said no, she needed me to stay overnight in the hospital for the new chemo. I said no, and put her off until Thursday, I was getting an award at work on Wednesday night. I was also reeling and needed some time to process.
I reported to the hospital on Thursday, April 23rd. ICE chemotherapy is a 3-day chemo. But each “day” takes 30 hours. They also had to put in a picc line before they could begin, even though I begged for a port instead, they insisted this would be quick and easy. I had never stayed overnight in the hospital before, and there was nothing redeeming about this visit. After six days, I was finally able to go home. Three weeks later, I was back in, this time it only took four days and I was able to go home, but ICE is a nasty regimen.
UConn does not do stem cell transplants anymore, and I went to meet with my new oncologist at Yale after the second round of ICE. Unfortunately, I thought I was done with ICE, as that is what UConn had told me, but Dr. S uses ICE and then double doses of neupogen to activate stem cells for harvest. My PET scan was also not clean, and he was hopeful that another round of ICE would clean it up. I was back at UConn, on the 6th floor, getting hooked up to my “stalker” pole for another 90-hour session of non-stop chemo.
I went to Yale on June 29, 2015 to begin stem cell harvest for my autologous stem cell transplant. They made me stay in their hotel, as I am more than 75 miles away, but it is much better than staying in the hospital. Monday night in the hotel, I was in so much pain from the neupogen shots that I could not sleep. That excited my doctor - he knew we would have a good stem cell harvest. I did two days of aphresis, harvesting over 6 million stem cells, and then was allowed to go home on Wednesday for a brief recovery period.
I was back at Yale on Monday, July 13th for a PET scan. Unfortunately, it still was not clear; there was a cancerous spot on my sacro-iliac joint. I knew the spot was still there, I had pain, and still get pain in that area, that they think may be residual or arthritis now. Dr. S said he was concerned, and I told him that made two of us. I was scared and frustrated that the awful ICE chemo had not done its job.
I reported back to Yale on Wednesday, July 15, 2015 to begin BEAM chemotherapy. This is what is used to wipe out your immune system, back to zero, before they “save” you on the seventh day by injecting you with your stem cells. I was able to stay at the hotel during BEAM, and walked over to the hospital every day for treatment. On Tuesday, July 21st, I was given my stem cells, and then had to check into the hospital as an in-patient.
Those ten days in the hospital are some of the bleakest days of my life. I cannot begin to explain the depths and lows that you go through, but it is true hell. The first couple of days, I just threw up everything. The APRN kept ordering me more anti-nausea medicine, and nothing could go through my mouth to my stomach. It all went through the picc line. I lost 15 pounds in the first three days I was an in-patient. They started freaking out then, and really pushing me to eat something. Everything tasted like cardboard because of the chemo. I forced myself to eat Rice Krispies and drink Ensure shakes. I ordered Rice Krispies three meals a day, it was the only thing I could stand, and even then, I stared at it for a long time before I could muster the energy and willpower to eat it.
I had platelet transfusions. I had blood transfusions. I saw more doctors, fellows, nurses and post-docs than I remember.
On Friday, July 31st, Dr. S came in. I knew my blood count numbers were not good, but I really wanted to go home. I pointed out that my nurse had taken my blood at 3 a.m. and it wasn’t fair to keep me in the hospital, because the numbers could be rising, and we would not know, because they had been taken so long ago.
He agreed to re-draw my blood that afternoon, see what my numbers were doing, and then either send me home, or give me a bag of platelets and let me go home. I needed more platelets. The order got messed up downstairs. Finally, at 8 p.m., I was allowed to go home.
After that, they allowed me to recover for a few weeks. I went back to Yale regularly to check in. I went back to work full-time on Monday, August 17th. On Thursday, September 3rd, I began a series of 18 radiation treatments on the one “trouble” spot on my sacro-iliac joint, to improve my long-term prognosis.
Once the radiation was completed, I got another break to recover, and then began the maintenance chemotherapy, Rituximab in late November of 2015. I have a port inserted again, as I did not want the picc line – it makes riding horses difficult. I had 16 treatments of Rituximab - finishing on January 18, 2017. It is a smart chemo, and only attacks cancer cells. But, I had fatigue, decreased white blood cells, and neuropathy as side effects, but I like to think that it is better than the alternative. Acupuncture helped with the neuropathy, it's almost completely gone now.
Cancer has definitely interrupted my life, but I refuse to let it define who I am. Despite the stem cell transplant, I rode 95 competitive miles with my horse, beginning at Day 73 post stem cell transplant, the weekend of October 3, 2015. This June, I completed by 1,000th competitive mile (more on that later). I am determined to live my life to the fullest, and keep medical interruptions to a minimum. I'm out living it - and hope you are too.