Battle Hymns of a Hot Mess Mom

To the ladies who have done S’s hair…thank you as now my inadequacies are that much more highlighted. 😂 Though these morning views are pretty amazing. Better than any ocean. It’s crooked and it looks a little weird but she likes it. Thank god she can’t see the back of her head.

Above is a representation of feral children with this hot mess mom. But at least they are eating…and watching S.W.A.T. But I get to be next to them and listen to them munch on their breakfast. I close my eyes and rest for a bit while they munch. I got one shouting “Bye mom” and one opened door “Bye Mama I love you with an kiss” – feral children. But good and kind people. Much better than me.

8:10am Best car ride ever said no one ever. I’m like a dog out for a car ride. I got to go to the post office and now Costco gas! I get to stay in the car – thankfully it was cool out still. I’m shedding all over the car and resisting the urge to lick the windows! This is as much “out” I’m allowed at this point.

10:22am Made it to COH. Thank goodness we had the HOV. It’s a drive – a very long drive. Let the bloodwork begin. We parked two miles away cause this place is POPPIN’ – all the parking lots were full. There are so many sick people here. So many people like me or are worse off. I see their eyes. They hurt. They are tired. I haven’t seen many people my age, most of significantly older. I barely have the energy, I can’t imagine how these patients in this 70’s and 80’s are fighting this fight. It’s definitely a perspective change. They are hustling for another day; maybe stop complaining that your body hurts cause you’re like 40 years younger than them. I filled in my form today for medical history. I checked “Heart Disease” under Mother for my mom. “Diabetes” under Grandfather. For some reason I dwelled on the fact that my children will need to check the box “Leukemia” under Mother and it made me sad. It’s insignificant in the grand scheme of it but it bothers me. My leukemia will follow them forever. My grandchildren will need to mark this under Grandmother. Why does this fuc*king bother me? I don’t know why it bothered me so much. So much so that I was in a funk in the waiting area to see Dr P.

11:40am We head to the exam room and wait for Dr P – Dr B arrives instead and says Dr P is with another patient but he’ll get me started with some info. (Dr B is like Alli except he’s a transplant doctor). He starts with a list of questions for me. How am I feeling, what hurts…etc. Then we get into the “meat and potatoes” of this transplant thing. Today I will give the sampling for HLA matching so they can start the search while I do Round 2. My transplant is Allo not Auto. Per Google: “Autologous: Auto means self. The stem cells in autologous transplants come from the same person who will get the transplant, so the patient is their own donor. Allogeneic: Allo means other. The stem cells in allogeneic transplants are from a person other than the patient, either a matched related or unrelated donor.” Basically my blood is no longer trustworthy and without bone marrow transplant my blood has an 80%-90% chance of replicating the cancer. Trust broken! So I need someone else’s blood/bone marrow to know that my cancer is bad and should be killed and not replicated. Dr B was very good as dumbing it down for me. Big words hurt my head and realistically I can’t process conversations very quickly these days. Mostly I just nod. Dr B said that when they find a match the prep for transplant will require hospitalization for 6-8 weeks. They will blast all of my bone marrow and drop my immunity to as close to zero as they can so that when I get the new marrow it takes over. Afterwards I wait for the stem cells to settle in my bone marrow and start producing new blood cells – it “grows” in me, it takes over and will fight any bad cancers for me. I “become” this donor – so if this donor has allergies, I could have allergies too. If the donor is AB+; I become AB+. It’s pretty wild. Maybe they love exercise…and then BAM I’m digging it. I don’t think it actually works like that but it’s funny to focus on… this is all a lot. Like overwhelming…so just like when Dr C said AML to me. I blank out and think about whether or not the donor could be a professional cyclist and now I’m on the road shouting “On Your Left” with high levels of aggression in my neon pink onesie. J said they are called “leotards” but onesie sound funnier.

Per Google: “To test whether a donor’s bone marrow is a suitable match for a recipient, doctors examine genes in the human leukocyte antigen, or HLA System — the part of the immune system that recognizes self and not self. In a full match, eight to 10 HLA genes need to match between donor and recipient. The HLA must be as closely matched as possible so that the transplant recipient’s body can ‘accept’ the new stem cells into their bone marrow. Just as important, matching at HLA will decrease the chance of the new marrow reacting against the patient, a reaction called graft versus host disease.” Basically new marrow could try to kill me because it see my entire body as the enemy.

2:30pm Finally leaving COH. The nurses here changed my PICC dressing and flushed the lines. Good blood return. Thank you!! I have daily blood draws and a PICC will make it so much easier than poking me for blood. Dr C likes a Monday chemo start; 5/1 here we go and 28 days later we do another bone marrow biopsy to see if we got it all. The new round is 7 days a week, joy. Really trying to see the positive. And failing. Drive home wasn’t bad with HOV. Couldn’t imagine slow rolling without HOV. Stayed mostly silent – I didn’t really get to lay down today so everything hurts and burns. I just want to lay in bed in whichever fetal position feels okay. We stop for McDonald’s on the way home – besides breakfast J hasn’t eaten a thing. French fries are fresh. I eat one, zero flavor and zero taste. Well that is disappointing… J says there’s plenty of flavor and salt! He scarfs it down, he’s starving. We get home and I plant myself on the couch cause I’m too tired for stairs. I remain on the couch until bedtime. It’s uncomfortable but I don’t think I’m getting comfortable today. It may just be a hurt day.