We have been on what already seems like such a long journey arriving to my diagnosis of Follicular Lymphoma. After months and months of waiting and ruling everything out, we finally arrived at the conclusion of Cancer after a surgery and a lot of diagnostic imaging. The surgery I refer to as the “cancer digging” expedition since it was the only true way to confirm the signs that pointed to Lymphoma.
Even though the road has already seemed so long I have been struggling lately to realize that the journey is just now really just beginning. After being referred to a leading cancer center in Boston and meeting with the team, treatment is scheduled to begin next week.
Next Wednesday, I am supposed to go at around 6 am to have a port put in. The port will connect to a large vein near my heart and will allow blood draws, chemo, and anything else that would be done intravenously to be done easier. I have terrible veins that blow easily and getting an IV is always a multiple attempt painful process. When they told me that I would be starting chemo I asked about the port right away.
Chemo is going to be a two drug therapy given over two days every four weeks for six sessions. The oncologist has chosen Bendumustine and Rituxan. My first day will consist of getting the port, bloodwork in the afternoon, a meeting with the oncologist, and then a 3-4 hours session of getting Bendumustine. Bendumustine is a chemo drug that has been shown to have a good response rate for Follicular Lymphoma. After that since Boston is about a two hour ride, we have decided to stay at a local hotel. We were blessed in the fact that the hotel offers a discount for patients undergoing chemotherapy. Day two will start at around 10 am with getting the other half of the dose of Bendumustine and then Rituxan. Rituxan is a monoclonal antibody. They warned me that day two is the long day since Rituxan has to be given very slowly and they will frequently have to stop throughout. I am concerned about the Rituxan. I have read some reports about the reactions that people have while on Rituxan and while I know that everyone is different, I know that I am usually unlucky enough to end up with side effects from medication.
I have to admit that the past couple of weeks have been hard on me. I am usually a very optimistic person, but lately that optimism and hope I always display was shaken a bit. Between recovering from surgery in three different sites, to dealing with two very excited children about the holidays, to keeping my house in order, to my full-time graduate class load, and volunteer work with our town, I have hit my breaking point. I think there have been very few days where I haven’t cried at some point. Whether it is an all breakdown ball my eyes out meltdown or tearing up when my children say or do something sweet, my emotions have definitely been on a roller coaster.
What has continually amazed me is the support that people have given over the past couple of weeks. I have always known that my family support network is amazing, but I am so honored to have so many friends that have reached out to offer support and help. It is less than three weeks away from Christmas and I have two children (3 & 6) who at that absolutely perfect “magical” age for the holidays. Without friends and family that are standing by ready to help, I would not be coping with this as well as I am. I feel incredibly blessed to have so many wonderful people in my life. The one song that continually keeps popping into my head is the song by the Beatles, “I get by with a little help from my friends”. My family couldn’t get through this without everyone’s help. We don’t know what is around the next bend in this long and winding road, but we do know now that we have a great group of people standing next to us cheering us all on. I will fight hard, I am strong, and I will win this journey.
I'm sorry about your diagnosis - I know it all too well. I was diagnosed in June/July woth Follicular Lymphoma Stage 4. I had the exact same treatment as you and am in the maintenance portion now. It works! My PET scan came back showing NED. Besides my neutrophil counts dropping it has been an "easier" form of chemo. I hope your experience is similar to mine. I would get a bit foggy after treatment days and a bit nauseous but nothing I couldn't handle. Take the post nausea meds as prescribed - they help! All of my side effects seemed to decrease and disappear by the 6the day after treatment. I thought I would react to the Rituxan as I'm allergic to so much, but I managed to do okay. I also have two young kids, 4 and 6 year olds. We didn't tell them about my diagnosis and have managed to hide them from the scariness of it all. You will do great! Keep positive (as hard as that is sometimes). You've got this!
You're going to come through this okay, it is a very treatable cancer. I worked the entire 6 months of treatment. I also have a young child. Rally your support people, you can do this!