When Magnolia was 2. doctors would tell me, “It’s just a phase.” No matter what I would bring up to them. Of course with her, it wasn’t just a phase, it was Rett Syndrome. Actually for her it was a stage, Stage 1 of Rett Syndrome and it was awful.
Now here we are 10 years later and I’m going through a phase… for the rest of my life. A perpetual phase of watch and wait. I’ve had moments where I was scared and angry and thought “Why me?” Only a handful of moments though. Maybe if we hadn’t dealt with a rare disease already, I’d be a lot more scared or worried on a daily basis. Mostly though, I just don’t have time for things that don’t matter, suck up my time or drain my energy.
Looking on the bright side really just seems like the only option. Its a healthier way to live. Which is important when dealing with health issues. Don’t get me wrong, I’ve been there, deep in grief, drowning, suffocating on the unfairness of life. Not knowing what to do, overwhelmed with the healthcare system and angry at everything. At some point, you have to say to yourself, “How can I work the problem?” “What can I do to live life to the fullest?”
With Follicular Non Hodgkins Lymphoma treatment plans vary from patient to patient as well as prognosis. Watch and wait seems to be a common theme.
I have finished Phase 1 of my treatment plant. Now we wait for 6 weeks, then there will be more tests. If Phase 1 worked then I will be monitored for any sign of progression. If Phase 1 didn’t work, then I’ll be doing Phase 2 of treatments. Then wait again, then test again. If it worked, then I’m monitored. If Phase 2 of treatments didn’t work, then Phase 3 will happen which is targeted radiation. Again we will wait, test and then proceed. On and on and on….
As annoying as these treatments sound, I am thankful there are treatments. I would give anything for Magnolia to have access to treatments or a cure. I’d give my life, I’d give my husband’s life, just don’t tell him. Also, if something happens to AJ, this is not a confession. Merely, a coincidence…