at 7… one IV failed, again, let’s fish around and get a new one.
at 8… worrying about danny’s unfinished valentines that he needs to take to school school today. i want to be home to take care of these little things for my babies
at 8:20…. dixon here to drop off laptop and phone charger. he is very tired and can only stay a minute to keep me company. i was very sad and lonely when he left.
at 9… trying to get my brain functional enough to do the FAFSA form for Emily, due tomorrow.
at 9:05 … called Sam to do the addition because i couldn’t figure out how to keep the calculator open and the FAFSA open at the same time and finding a pen to write the numbers down was just way too hard.
at 9:15…. evening dose of blood thinners, new IV is not working. nurse pulls it out and awaits the other IV specialist nurse, the first one refuses to stick me anymore.
at 10:00…. severe shortness of breath, respiratory therapy here to help.
at 1020… new bunch of nurses start working on sticking and sticking and fishing to get new IV. because antibiotics are ready to go, too.
at 11:00 … talk with emily, who has fixed danny’s valentine problem, about FAFSA, learn that we also have to do something called CSS. which requires a credit card. we have to pay money to tell a different organization exactly the same infomation as the first one… of course I don’t have a credit card with me, so it will have to wait.
at 11:20… fever up, heart rate up, pulse ox down, i think it was the FAFSA.
at 12:00… IV team back again to get another IV because I need to have two. and i only have one arm they can stick because of the lymphedema.
at 12:25… drift off to sleep, in tears because i feel so crummy and I miss my babies and this whole thing is way too hard.
at 12:45… nurses wake me up for medicine.
at 1:00… try to go back to sleep again, just could not stop those darn tears, considered calling dixon but I knew that if he knew how sad I was he would drive over here to try to fix it and he has to go back to work tomorrow, so i decided it would be best not to call him.
Fast forward to this morning;
at 6:00 nurses bring in morning meds. gosh that’s a LOT of pills. i am having a hard time with the timing of coughing, drinking water and swallowing the pills.
at 6:15 … call dixon to see how everybody’s doing. he sounds like he has it all under control. i don’t know if this makes me feel better or worse.
at 6:20… oncologist comes in for morning rounds. i asked him if i could go home today. he laughed. big belly laugh. i was telling him i missed my babies and burst into tears. that started the coughing back. which causes the most awful pain on my side where the pneumonia is. so i cried harder. oncologist goes to find me another box of kleenex.
at 6:25…. oncologist tells me that I have unrealistic expectations, and that holding on to those is only going to make me feel worse. he reviews the plan for the day, labs and scans and which specialists are coming… believe it or not, we are continuing my chemotherapy even through this, since I’m on antibiotics anyway, and being watched so closely, he thinks it’s safe, and the risks of stopping and then restarting are high.
so there you go. he calls them unrealistic expectations, I call them the normal feelings of a mama who wants to be with her family. i know the common wisdom is that all mamas want more time by themselves, without little people climbing on them and big people needing various things, but what i want is MORE time with my babies… . so i guess i have to stick with the program here, and get better before I go home. i guess i was confusing “being less critically sick” with “being sort of OK to resume life as usual” …. Sunday night in the ER was really scary. I don’t ever want to do that again. ever.