Some updates

Again, I have been remiss and neglectful! I have a draft of the birth story and some other updates in the works but haven’t gotten back to the “big project” of that yet…so tonight I am going to enter a few snippets and just post what I have when bedtime hits (read: Stephen wakes up for the bedtime feeding). So if this post ends abruptly or seems incomplete, it is. More will follow, eventually.

I had chemo treatment #7 today, putting me officially over halfway! The last one is scheduled for March 1…and it’s coming. Soon and very soon.

I got Bendaryl again with the bleomycin now added in…Benadryl is crazy stuff! I’d have to think long and hard about using it for general purposes. It knocks me out for a good part of the day.

I am getting a port put in the first week of January, and my PICC line removed (I like to say “yanked”, it sounds so official and medical-y!) the week before that. Maybe. We’ll see. In my ideal world, they use the PICC line for that week’s blood work and then the anesthesia for the port placement (more sedation! I love that stuff!) and then they remove the PICC while I am still out and I wake up none the wiser as to how that actually feels. I’d already rather not know how it feels going in, but that horse has left the barn. In the real world, anesthesiologists maybe don’t like PICC lines for their craft, and something something something else about the blood work (this was all being discussed AFTER the Bendaryl was on board) and the upshot is I probably have to get an old-fashioned blood draw for my labs and then an IV for the anesthesia. Wah!

I am such a baby. I have had those before. I have given birth med-free (second time). I have gotten epidurals placed (#1 & #3) and an IV is much nicer than epidural. I have just gotten really spoiled by my PICC. But the risk of infection and the chances it might stop working before all of this is over are decently high, and the port can stay in for quite a while so I can get my bound-to-be-extensive blood work done there for follow-ups down the road, too.

I had a PET scan on Tuesday, my first since all of this now that I am not pregnant. Drinking the barium stuff was the worst part of it, ugh. THEY could do the injection into my port! results came back and showed that: A) I definitely do NOT have involvement below the diaphragm, which means I am still Stage 2, which is the expected result but still good that nothing escalated; 2) the neck and axillary lymph nodes are measuring 1.7 cm and…something else…for the largest ones, which is a reduction by approximately half, at the halfway point for chemo, so that is good too; and D) the mass by my heart is definitely a lymph node (this was unclear before with limited imaging) which means it is not IN my heart, just next to it, and the node is measuring about 5 cm, down from the approximately 12 cm that MRI put it at in September. This is all good progress.

I will get another PET four weeks after my last chemo in March. The results of that will determine whether or not I need radiation. Obviously I would rather not, and I am asking for prayer that the chemo will do the job completely and permanently. I will do what I have to do, of course…as with all of this…but I’d just rather not do too much more.

My hemoglobin is up to 11 for the first time since this all started, yay! It might still go back down, but for now we have good progress. Been in the 9-10 range previously.

My nurse today is 35 weeks pregnant with her first and did not find out boy/girl. Ah, memories. 🙂 We met a very nice man who is a pastor and volunteers at the infusion center…now that his wife is done with her treatments. It was good to talk to him, and he specifically acknowledged how hard all of this is for Chris, too. A lot of people get that, but sometimes it gets lost in the shuffle.

Stephen comes with us to all of this–he mostly sleeps still so is very easy to cart around–and he is a little celebrity. 🙂 The nurses today were sad that he was sleeping when we arrived and asked if he would wake up so they could see him. We told them (accurately, once again) that he would wake up as soon as Chris brought back our Mexican food for lunch. On the dot!

Stephen is, far and away, our best sleeper. Bless him. Is it him? Is it the formula? Don’t know, not particularly concerned with why! Just enjoying NOT feeling sleep-deprived most mornings.

He had a follow-up with the pediatric urology surgeon last week (and weighed 8 lb. 1 oz.!) and seems to be doing well. They will continue to look for his still-undetected gallbladder every two months until he is six months old, at which point they give up on it but also he is pretty well out of danger from anything developing in a wonky way and causing toxicity. Is my general understanding. More of the saga is included in that draft post I mentioned, which I will post fairly soon, but sufficient to say that he seems perfectly healthy, gallbladder or no, and will join me in the ranks of “met the medical deductible for 2013”. Glad we signed up for the FSA.

He is really cute. Well, you all saw the pics. I will post more at some point. Really cute. Really mellow! And snuggly.

We have been blessed with many, many meals this fall, including a near-solid every-other-day run after Stephen was born and through the next two chemo treatments. We are so grateful, and pray for blessings for the families of all who have served in this way. It helps more than is often realized.

I have also, post-pregnancy, been blessed with decently-renewed energy in the week between recovery and the next treatment (aka “good week”) and have been able to actually cook dinner for my family a few times! Anyone who is on Facebook with me knows I mostly post about food and my kids, I like food. I like to eat it, but I like to plan, shop for, and prepare it, too. Dishes, meh. 😉 So this is a happily normal thing for me.

My family is coming out for Christmas, yay! So, so, so, so looking forward to the coming week, even with chemo recovery mixed in. That’s almost normal, but the family visit is cause for celebration!


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