(Posting this first since I wrote most of it Monday morning…more recent update to follow.)
Since I am certain there will be several phases of adjustment, the next big one hopefully being when baby is born.
I left the hospital Friday afternoon almost exactly 48 hours after I walked in. Chris and Mom came (with Luke) to pick me up, and then we went to get Joseph from the friend’s house where he had been VERY happily spending the day. Mutual friends were there with our dinner, so we headed home and were able to sit down and eat, then move pretty quickly into bedtime for the boys. It was good to be home!
Saturday morning saw both boys heading out with still another wonderful family, this time to the farmer’s market and park. Luke didn’t want to go when we first told him (he has definitely been showing some of the stress of all of this, wanting only Daddy or Mama) but he decided to go “with Jophuph” and had a lot of fun with big brother and the three other kids. I think Chris and Mom and I just collapsed a little–so rare that the house contains three adults and no kids! It was quiet.
That afternoon we went to church at 5:00, probably the last weekend service I will be at for a while. By Wednesday my immune system will hit a low point, and just as it starts to build back up I will go for the next round of chemo, so as of now I am officially immune-compromised and directed to “avoid crowds” during treatment. Like at church. And the grocery store. Etc.
So, if you do see me out and about, act like I’m contagious. I’m ordinarily up for a hug from a friend any time, but for now need to keep my distance. Just in case. It’s one more aspect of this to which we will need to adjust–what is reasonable, what is necessary, what level of diligence just makes us feel a little safer. Of course, with kids there’s a certain level of germiness that can’t be avoided, and I do plan to leave the house occasionally! (As an aside, the place I will most often go that has a lot of people and germs is the HOSPITAL. Sigh.) But for now we are just going to be very careful. The main issue is that any time I get sick the treatment schedule could be affected, in addition to me just not having the immunity resources to fight things off well.
So part of that adjustment is practical, logistical, activities. Part of it is the emotional side–simultaneously being relieved to be in treatment and be doing something about this cancer, and also knowing that in many ways I will be at my weakest and often feeling powerless. I also have to face the social aspect of these changes as I decide how I feel on a given day about going out. Today I would ordinarily have gone to my Bible study…a small group, not a crowd…but this morning I am more tired than I’ve been since Wednesday, even with better sleep than on either of my hospital nights. And this just may be the way it is for a long time; I don’t know. For now I am resting and hoping to adjust a bit physically after a few rounds. Just in time for baby…
Other than being tired, and the minor contractions Thursday night, I have mostly avoided major side effects. No nausea–this kind of chemo is supposed to be relatively mild, and I’ve had anti-nausea meds and steroids to help on that front. Some heartburn over the weekend, but not bad; any day I feel like eating has certain merits! This morning it is just plain tiredness. There are other things that may develop over time, but for now that is it.
The next adjustment will be…my hair. It will probably fall out. I plan to get a very short cut in the next day or two–big step for someone who has never gone shorter than an earlobe-length bob–and as soon as I see it falling out, Chris’s shaver is on duty. I’m hoping to make this change into something a little funny and weird for the boys–maybe mostly Joseph–rather than scary, so I’ll see if he wants to help. We’ll see; hard to tell which way it’ll go for him.
So the next time you see me, I could have very short hair, or none. Haven’t though about wigs, might try scarves, I have a sun hat to use outside for now, and we’re getting into winter hat territory here sooner or later. I haven’t really planned for this part, other than getting a cut and shaving my own head before the chemo does the job.
Other adjustments include gratefully accepting the offers of meals and other help (kids, errands, etc.) from our neighborhood and church families. We are so blessed by the many people who are willing to help. It’s amazing what a relief it is to know that “dinner is coming” and not have to think about it more than that. The support that has mobilized even so far has been amazing, and we are so grateful. Hard to express it as strongly as I feel it, but I want you all to know!