Currently I'm freaking out b/c I'm afraid Anna's leukemia is back. Logically, I know it most likely is not, especially since she just finished three weeks ago her nasty course of chemo - but her late on-set symptoms have me so terrified. I'm back to not being able to sleep. She's getting headaches (again), not eating (again), nausea (again) and leg pain (again) - Every.Single.One. of these symptoms she had when she was initially diagnosed.
And, while logically I know that chemo can cause each of these symptoms, as do low blood counts cause issues - I can't relax. It is so incredibly frightening - hard to relax, hard to sleep, hard to even concentrate on the day to day. On Thursday she had a visit with a doctor we've met once before - she just kind of blew it off b/c obviously she's had a rough course of chemo and is still recovering - except that, as the Mom, I don't remember it still affecting her this many weeks post-treatment and there is too much bad and sad stuff going on in cancer-ville - along witht he unknown, to take anything for granted. On Friday she was scheduled to have IT chemo and they'd test her spinal fluid -since her counts were too low it is rescheduled for this Friday. I am anxious to get the results but I am also terrified. Beyond terrified. So terrified that I turned down three invitations for Saturday night. I just can't be good company and I can't calm down. I can't do really anything but worry.
There are a couple of groups for parents of kids with cancer - well, more than a couple. I should more accurately say a couple that I have been invited to join. One of them I had to opt out - I can't be with that group. The constant questioning, the constant fear and non-reassurance, the fact that it seems as if most of the parents are dealing with children in relapse. Too scary and not nearly enough positive for me to want to be a part of and continue and possibly contribute. I was talking to our social worker at the hospital the other day about insurance and money and paying and everything related to the changes in insurance. He, as usual, checked in with me personally. He's so good and so sweet and I just love him - not like hot sexy love - but love as in very much appreciate and care about him.
Anyway - his point to me is, I'm seeing the parents and kids that are still in treatment or have relapsed. Hard because we still have several months to go - but I'm constantly seeing kids finish their treatment and be able to be done. Head to Maintenance, head back to Alaska or Port Orchard or Montana or wherever they've come from and we are still there. With, of course, the understanding that I have no idea when some of these kids started treatment and also - just as Anna's treatment is only Anna's treatment theirs is onlytheirs. Even the same diagnosis is different treatments for different kids. Okay - so he totally didn't say all of this like this - But, he did say that I am only seeing the two out of ten kids. I'm not seeing the 8 out of 10 kids that are gone. So, it is easier to focus on what I'm seeing and that feeds the fear.
I just have to believe that all the extra treatment and radiation that Anna will be receiving will cure her permanently and this will be a blip in our lives - three and a half years of hard work and pain and fear and hospital visits but then life moves forward and we move forward and this is all in the past.
We also discussed how scary it is to be considering heading into Maintenance therapy. Really. As insane as it sounds - the thought is terrifying. Maintenance consists of one visit a month for two years and a spinal every three months for two years. Of course checking on counts and watching for fevers and anything else but the plan in once a month! Once a month. You know there are several weeks when we are in clinic - not even the hospital, for 5, 6, 7, 8 days in a row. The new new normal expectation is that we would be here for one day out of 30. Can't begin to wrap my brain around that - and as exciting as it obviously is, brings a new set of fears. No more safety net. He told me that if he'd told me in the beginning that I would feel this fear I wouldn't have believed him. Totally true. How could I possibly be scared to not be here and not be surrounded by cancer and everything it entails - well, now I know a whole lot more and I have an entirely new education and perspective to be afraid from (shhh, I need to end with the preposition)
Lately I've been branching out and reading about other peoples' ordeals with cancer for their kids. It is incredibly affirming and generally hopeful and uplifting. It is also scary and tiring and draining but wonderful to know that other parents feel the same way at times. The feelings aren't just mine but shared - almost a justification. Totally not needed, but nice still the same. There are portions of their writings that I wish I could copy verbatim but as they are their words for their journeys I need to find the right words to write about our journey.
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