Hodgkins Lymphoma Awareness

My Journey Battling Cancer & Graft vs. Host Disease
Fighting for my life each day against the odds

My Story

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The year 2004 came and went by so quickly. I was working full-time in human resources, was planning my wedding, and around two hours a day was spent commuting back and forth to work. I was running on adrenaline. I was tired most days, but figured it was from all the stress. My big day was October 9, 2004. It was a gorgeous day, everything turned out perfect. Soon after I noticed I was itching quite frequently, mainly on my legs. I also started having sweats. It was just about winter time, and each night I would wake up soaked. Chris thought I was losing my mind. I began to question it myself.
 
The beginning of 2005 I started to develop a dry cough. I've always had allergies, but it was mainly sinuses. The cough seemed to worsen and I had a heavy feeling in my chest. I went to my Nurse Practitioner in February and she decided to put me on Advair for asthma symptoms. I wasn't physically checked, it was just "assumed." So, I listened to "doctor's" orders. I made an appointment for a physical on March 10, 2005. I was hoping for some "answers." Instead I got an A-OK check-up.
 
Chris and I planned our honeymoon for March 26 - April 2, 2005. We went to Punta Cana, Dominican Republic. Unfortunately, we had an awful experience. We both got sick with traveler's diarrhea. When we got back to good old US of A, we went to our doctors. We were put on an antibiotic. The diarrhea went away, but I still felt really sick. I started a job at a career school as the Director of Career Services on April 14th. I had finally landed a challenging job. I was working 11 hour days, lecturing to a room full of students two hours at a time. My cough was unbearable. The itching was driving me crazy.  I couldn't go home, I had just started this job.
 
I decided to go back to the doctor, but decided to see someone else at the practice. This doctor decided to do a breathing test. I did this whole test to see if I actually had asthma. My breathing results were good, I didn't have asthma. So, I was told that it was "probably" allergies which was related to the itching and coughing. I was given a prescription for Singulair. Needless to say I didn't fill it. April 20th I had a chest xray just to make sure everything looked okay. April 21st I was sitting in my office and the nurse called stating I had pneumonia. I was so extremely sick I was out of work for a week and a half. I was put on antibiotics and cough medicine and abuterol inhalers. My symptoms only worsened. I went back to work knowing I had to because I would loose my new job.
 
I had a second chest xray the first week of May and it showed I still had a spot in my lung. A catscan was ordered since I wasn't getting any better. It wasn't scheduled until May 24th though. Sunday, May 22nd, I was by myself all day. I was feeling extremely ill. I was lying on the couch and felt my neck. I felt a lump but didn't think too much of it. I stayed on the couch for another couple of hours. Around 11pm I went up to bed and was brushing my teeth in front of the mirror when I noticed that my neck was swollen from my collarbone up to my throat on my right side. Chris was at work, so I freaked out and called my Mother. She told me to call the doctor, I didn't want to but I did. He told me to go to the ER. I asked him what he thought it might be, and he said a swollen air sac, since I had been coughing for months and strained it. By the time we got to the ER it was almost 1 in the morning. They did another chest xray and said that it was still pneumonia, but there were was more than one spot on my lung now. He told me to follow up with my doctor on Monday. I went to the doctor on Monday and he still was unsure, he said that the catscan scheduled for Tuesday would show more. I had my catscan, was back in my doctors on Wednesday, and he was telling me I needed to go see a surgeon for a possible biopsy. I went in on Thursday, May 26th to the surgeon, still thinking I had pneumonia. My surgeon told me I had Lymphoma. I had cancer. I was in complete shock. I had my Mother and Chris in the examining room with med. I just couldn't believe that for months I had pneumonia, and now I was being told I have cancer. I was sent right over to the hospital and they took out of my neck my lymphnode, which had swollen to 8cm with cancerous cells. I was then admitted to the hospital on Friday and stayed until Tuesday. I was dehydrated and wasn't eating. My family and I went to Dana Farber Institute in Boston on June 1st to get a second opinion. They are one of the best cancer institutes in the world. The doctor told us that treatment through Maine Medical Center would be the same chemotherapy used at Dana Farber and it would be easier for me without the commute. I started treatment on June 10th, 2005. I had six months of chemotherapy. I was diagnosed with stage IVb Nodular Sclerosing Hodgkins Disease. My tumors were in my neck, chest, underarms, and left lung. The doctor I saw at DFCI said by looking at my scans that I had cancer for at LEAST a year.  I had been misdiagnosed.  An otherwise, "healthy" young woman, WHY WOULD THEY THINK I HAD CANCER?"
 
December 14, 2005 the scan came back, my cancer was growing. I went for a second biopsy of the node in my neck (the same spot I had the last biopsy.) They wanted to make sure that I did in fact have Hodgkins Disease. They said there could be a possibility of it being Non-Hodgkins as well. It was confirmed it was just Hodgkins. I started chemo again, but with different drugs (ICE) is the acronym. This was to consist of three days in a row of treatment, lasting 6 hours a day. I was to do this twice, consisting of six total treatments. I only made it through a day and a half. The ICE took a toll on me and landed me in the hospital. I was then switched to GND chemotherapy. I had a CAT scan and finally got some good news. My tumors were shrinking. I had an autologous stem cell transplant (BMT). The transplant is supposed to clear out your immune system with the high dose of chemotherapy drugs and then replace with my stem cells.  I had an IV catheter placed in my neck which was for harvesting my cells and for the transplant. I was admitted to Maine Medical Center on February 27th. On March 7th, 2006 I received my own stem cells. I was there for a month.
 
Five weeks later I got word that my tumors were growing again. I had 21 rounds of radiation the neck and chest area. A scan was done in the end of June. Results came back showing that it appeared the spots in my lung were growing again. I had two lung biopsies which both came back inconclusive. I went to DFCI to meet with a transplant doctor. He confirmed that it was the Hodgkins. I started chemotherapy in Maine - GND again. The next step was to find a match for me so I could have an allogeneic stem cell transplant (BMT). October 12, 2006 a match was found. It was a mismatched unrelated donor, meaning the chances of it working were a lot less than if it was a perfect matched donor. However, my tissue typing is so unique that it would have taken too much time, and that wasn't on my side. I was admitted into Brigham and Women's Hospital on November 8th. I had chemo the 9th-12th. November 14, 2006 I got my donor's stem cells. I had to stay in Boston out of public until the end of November when I finally was able to go back home. Mom and I had tuna fish sandwiches for Thanksgiving.
 
January 5, 2007 my PET scan came back clear for the first time ever, meaning no signs of cancer!
 
March 29, 2007 a new tumor is found behind my stomach.
 
May 1, 2007 Chronic Graft vs. Host Disease sets in. (GVHD - donor's immune system recognizes aspects of my body as "foreign" and mounts an immune attack.) Put on Prednisone (steroid.) 
 
June 28,2007 GVHD becomes extensive and is in my eyes, mouth, and a rash is on my body. Back on immunosuppressant drugs to try to stop my donor's cells from attacking.
 
August 15, 2007 PET scan shows no activity of Hodgkins! :)  GVHD is working on cancer, but is attacking more of my good cells. It is now in the lungs and stomach as well.  Four treatments of Rituxan chemotherapy are ordered to try to control the cGVhd. No results.
 
I am admitted into Brigham & Women's Hospital for complications the first week of September 2007. I am now on oxygen and need a wheelchair for transportation, since the cGVHD has affected my bronchiolitis obliterans in my lungs.  I am now on 40 different medications. The goal is to keep the cGVHD from not worsening and to try to keep my body able to function on a daily basis. My situation is unique, there has never been a case such as mine. My oncologist says the only testing for this is done on lab rats and now me! Trial and error is now being used.  I started Gleevac, a chemotherapy pill used to treat Leukemia. My oncologist hoped that it would help alleviate my symptoms of cGVHD. Amazingly my insurance company approved it for 30 days at a time for three months.  Unfortunately, the Gleevec didn't agree with my body.  I only took five pills.  I have never felt so sick in my entire life.  I couldn't function. I seriously thought I was dying.  I was told to stop it.  The doctors wanted me to try it again, but I refused.  My options were slim, and it's only trial and error since my case is unique. It's not in medical books and there are no protocols.  I had two other choices.  Photopheresis and Cellcept.  I chose Photopheresis.  I also started a clinical trial of Enbrel.  Enbrel is used primarily in patients with arthritis. It is being tried for inflammation in my case.
 
February 27, 2008 - After three months of photopheresis and Enbrel shots, it is decided that I stop treatments because there has been no improvement.  I am now focusing on quality of life.  I need to enjoy the time I do have with my family and friends.

May 19, 2008 - Hospice is brought into our loving home. My doctors believe that I don't have much time left. Hospice is for those that have 6months to a year to live. During this time, my body became extremely weak, tired and emotions ran strong. I had to write a living will, advance directive and plan my funeral. Well I got through bronchitis, and saw another Christmas.
 
March 2009 I went by ambulance to the hospital the same day my sister was admitted to have a baby. I believe God made this happen, because I was able to witness the birth of my brand new nephew, Jackson! I was hooked up to my IV and morphine pump and my nurse from the cancer unit brought me over to the birthing center. I was discharged the same day as well. 
The end of March I was told that I was being "kicked out" of hospice because I didn't die. It's a good thing, but funny too in a way. This is because of insurance purposes.
 
April 2009 I started up with visiting nurses again. During this time I had a physical therapist that got me back up on my feet and had me moving around more. Heather is her name and she was awesome.  She motivated me every week. On the days I'd be lying on the couch, she'd say sit up let's do some leg movements. I had a wonderful nurse, Stephanie. Whenever I needed something she was always right there.  I have so much respect for her. She tried to help me with my breathing and coping day to day.
 
August 2009 I met with my pulmonologist to talk to him about where I'm at with my breathing.  He talked about all the medications I'm currently on and that I should do more breathing tests to see where I am at now.
 
September 2009 I took the pulmonary function tests (pft) which was extremely  harder this time. My test had to be modified so I could complete it. Then came the hardest, a 6 minute walk test. I don't walk around. I haven't for two years. I just scuff along to the bathroom, my bedroom, to the couch.  They let me use a walker, and my continuous oxygen. A nurse pushed along my wheelchair in case I had to sit.  I took several breaks for periods of time. The minute I just stand up my O2 drops. When I reach 100 feet my O2 plummets to low 80s. The technician had me at 8 liters of oxygen which kept my oxygen saturation in the high 80s to low 90s. I knew my lungs are severe and barely functioning, but I just didn't realize how bad they really are.  Since I am inactive, due to my illness I won't be walking around. So whenever I am going to do anything, my oxygen needs to be on at least 4 liters continuous.
 
I also found out from my oncologist that my recent bone density scan shows I have osteoporosis of my hips and osteopenia of my spine. Osteoporosis is the thinning of bone tissue and loss of bone density over time. Osteopenia is a condition where bone mineral density is lower than normal. It is considered by many doctors to be a precursor to osteoporosis. For me this is caused by being on steroids for years and being inactive.  I was given an IV of Reclast which is used to treat bone loss after menopause. It may also be used to treat or prevent osteoporosis in people who are taking corticosteroid medications (such as prednisone) for long periods. It works by slowing down the breakdown of bone and keeping bones strong. It also helps to reduce the risk of broken bones (fractures.)
 
September 2009 I have started Pulmonary Rehabilitation. It is a 10 week class at a local hospital. I go twice a week and they are 1 1/2 hours long. My pulmonologist recommended this.  It will NOT help my lungs, since the damage is done and there is NOTHING that will fix them. However, this is in hopes that it will strengthen my weak and tired body. That being said, insurance won't cover the Pulm. Rehab AND visiting nurses. So, I now am only with the pulmonary rehab. I have gone to two classes and have enjoyed it thus far.  There are a few others, I'm guessing early to late 70s. Most have COPD and all are able to walk without oxygen. So it shows you age does not matter with illnesses.  I can't do the exercises they do, so everything is adjusted for each individual. I did a little bit of pedal pushes while sitting back in a chair. I started with 2 minutes long and then the second class 4 minutes. I take many breaks and the instructors are constantly checking my oxygen and blood pressure. I believe this will be challenging but a good challenge.
 
After 10 sessions completed, I started to do things that both myself and the trainers did not think I could do. Granted, I was moving very slowly and had my oxygen cranked, but I was moving. I used the recumbent pedal pusher at a slow pace starting at 2 minutes, then 3 minutes, with 5-10 minute breaks in between. I would then do some strength training. Arm pulls, squats (ouch!), 0 lb. weights (yeah I didn't know such thing existed), all while remembering to do my pursed lip breathing. I watched the others practically run circles around me. It did make me a little frustrated since they were all old enough to be my grandparents, but it also gave me a little hope. I know it wouldn't change my lungs, but the movement can never hurt. I was on a roll, and then the first week of November I got sick and immediately had bronchitis again. At the same time my two big toenails had ingrowns and became extremely infected. To top it off I had a plantar wart on the bottom of my ring toe. I kept going to the podiatrist to have him treat them. They were so extremely sore that I could barely walk (I was thankful for my wheelchair at that point.) I had to stop going to Pulmonary Rehab because my bronchitis really took a hold of me and I wasn't able to do the exercises because of my sore feet. I ended up having the nails on both toes surgically removed and the plantar wart was cut out.  Soon Thanksgiving came and then Christmas. I was going to restart in the beginning of the year, but kept feeling so ill. Time went by and my contract that I had signed for the rehabilitation had expired. So, I decided I really needed to get some counseling. I started going in the beginning of February and then landed in the hospital for a month with pseudomonas bronchitis and then found my gallbladder was no longer functioning and was making me violently ill. I had surgery to remove that. 
 
April 2010 back home still recovering from the surgery and now having some symptoms that are trying to be squared away. Going back to counseling as nothing is ever perfect in life. I am trying to find quality in life. It is not as easy as it sounds.
 
 
Keep pushing on day by day. Just keep smiling and laughing. It's brought me this far.