Tonight we went to our second Seattle Cancer Lifeline “Lymphoma Networking Group” meeting. It was neat to see some folks that we recognize from our first time, and to be able to share stories with friendly people that have been through this all before.
I feel pretty lucky with how little (in the grand scheme of things) the treatments have impacted my life, and it was nice to hear stories about other folks that have endured similarly well. It makes it feel less unusual; less like there’s some big other unknown shoe that’s going to drop and make recovery harder.
There was also a big discussion about the psychological impact of being a cancer survivor. First there’s the big period of fear and uncertainty while being diagnosed before treatment starts.
Then treatment begins and you get something concrete you can battle. You focus on that fight. You face your own mortality for 6 x 3 weeks.
If things go well, the battle is done and you stand victorious. But then you’re back to uncertainty! Will the lymphoma come back? How much time do you have left? Will the same treatment work if the cancer recurs?
The psychological impact of releasing that intense focus from the treatment paired with facing the large unknown that is recurrence can lead to a ton of stress. I need to be ready for that. To have an answer to the question of “what now”? To not fear.
And, in more physical terms, it is reported that treatment-induced fatigue can last a long time after chemotherapy is finished! Red blood cells live longer than white, and as a result the body doesn’t produce them nearly as quickly. It may be quite some time before I’m back to 100%.
It was encouraging to spend an evening with a big table full of cancer survivors and loving spouses. Lymphoma will always have an effect on our lives, but it’s (mostly) up to us to choose how.
I’m looking forward to being a survivor.
Posted in: Treatment Phase | Tags: cancer lifeline, stress, support group, survivor
- Learned of possible information-having lymph nodes in my neck
- Met awesome folks with great advice at the Lymphoma Networking Group
- Got the ball rolling with SCCA second-opinion scheduling
- Requested that Group Health send my records to SCCA
- Scheduled MUGA scan for next Tuesday
- Scheduled surgical consultation for Friday, and surgery for Monday
And now I go to the dentist, where I will not be getting any cancer-related treatment. 
Posted in: Diagnostic Phase | Tags: cancer lifeline, dentist, lymph nodes, muga, seattle cancer care alliance, second opinion, surgery
After the meeting with Dr Norman, we headed to our first meeting of the Seattle Cancer Lifeline’s Lymphoma Networking Group. It was so very worth it.
We had a lot of questions that would be difficult for the doctor to answer. Questions that make people who’ve already been through this ideal resources.
We picked up some food on our way; each meeting starts with a potluck. We put on name tags and started getting to know people.
Soon everybody moved to a room next door with their plates and we sat around a large table to begin introductions. Each person introduced themselves in a different way, but most included some part of their “Cancer ID” — if they had lymphoma, if they were a caregiver for someone with lymphoma, what kind of lymphoma, how they were doing.
After introductions, we started letting our questions flow. We got answers to our questions, answers to questions we didn’t know to ask, and advice from people who’d been through it.
Some tidbits:
- Stay positive, do the things you love, be surrounded by positive people. These are the things that will keep you from wallowing in despair or self-pity.
- R-CHOP did not keep most people from being able to work. Stay positive, stay motivated.
- Don’t put all of the obligation of moving things forward on your doctor. Be active and persistent in getting scans scheduled, educating yourself on your situation and possible courses of therapy, and being able to effectively discuss diagnosis and treatment. Through this you can help channel the doctor’s attention, energy, and expertise where it is best applied: on evaluating and treating the lymphoma.
- Be proactive in discussing health with family and friends. Many people will be unsure about what kinds of communication are OK and not OK with you, and this can create stress in friendships or family relationships. Make your willingness (or non-willingness) clear. Additionally, when you need help, make sure people know!
- There are cancer retreats at Harmony Hill on Hood Canal that are free for cancer patients and survivors. Awesome.
- We received some glowing recommendations of some lymphoma specialists to see at SCCA.
- Chemotherapy nurses have good advice about treatments, side effects, and how to mitigate them. Use their experience and expertise!
- Prednisone (part of CHOP) can be an emotional roller-coaster. And if you stop it suddenly without stepping down in doses, you’ll hit a brick wall and have no energy at all for the next few days.
It helped tremendously to talk to others who had done this before, and to hear about what they (and their spouses) endured to get through it. It was very encouraging, and I recommend it to anyone newly diagnosed with lymphoma.
Posted in: Diagnostic Phase | Tags: advice, cancer lifeline, chemotherapy, harmony hill, lymphoma, prednisone, r-chop, seattle cancer care alliance, support group