I’m a 70’s baby and Weebles were part of my childhood, so much so, that the slogan is still in my head. Weebles Wobble but they don’t fall down. That’s basically how I feel these days in a nutshell. I’m wobbling but I’m still standing.
Tuesdays just don’t seem to be going my way these days. What should have been a routine appointment yesterday, turned into something entirely unexpected. My friend Simone took me to my appointment and when she picked me up, I was eating breakfast and in good spirits. I had packed snacks for the day: an apple, some walnuts, a couple of packages of nori. I was so confident that we were going to be in and out of the appointment, that I had booked an appointment at Zichron Menachem to donate my hair.
Zichron Menachem is a wonderful organization that is known for their hair donation/wigs for cancer patients. But they do a lot more for people with cancer. They also have a program for children who have a parent going through cancer. They have Chugim (after school activities) and lots of other support. I was supposed to go, donate the hair I cut off right after my first RCHOP treatment, and sign the kids up for some of the Chugim.
But you know the saying: Man plans and G-d laughs.
We got to the hematology day clinic and signed in around 8:45 a.m. My appointment to meet with Dr. Ashkenazi was scheduled for 9:00 but I knew it wouldn’t happen that early. First I needed to have my blood drawn and the results take an hour. We waited patiently in the waiting room and caught up, and then it was my turn to go see the nurses.
Because of the PICC line, the nurses have to draw my blood. They also, once a week, need to disinfect and clean the line. They flush it with heparin to make sure no clots form in the line. Since it has been a week plus one day from when my PICC line was put in, I needed the “sticker” changed. That’s what the radiologist had told me when he put in the PICC line. He mentioned that he wasn’t using stitches to keep the PICC line in place and that I would need to have a nurse with Meuchedet (my health insurance provider) replace the sticker once a week. Since I’m not a radiologist and I have no idea what that means, I just took the instruction and said okay.
I asked the head nurse at the day clinic, who was in charge of my care yesterday, if she would be able to change this sticker. And she was stumped. She had never seen this particular bandage before and so she tried to get the radiologist on the phone. He was in the middle of a procedure so she spoke to one of the nurses in the department. The nurse told her to move forward and change the bandage.
So she started to remove the bandage, which was really stuck on to my skin and hurt a big. When she finally managed to get it all off, the PICC line began to fall out. So, there was some mild panic and she quickly cleaned it off, which burned like hell since it’s an open wound, and put two clear stickers on my arm to hold it in place. But the PICC line consists of two tube like things that stick out of my upper arm and the weight of these tubes were pulling out the PICC line, and so I started having another blood pressure moment. I got dizzy and nauseous and since I was right next to a bed, they got me up on it and brought me some water to drink. At this point, I asked if they could get Simone to join me, because I didn’t want to be alone. The nurses left to try to figure out what to do about my PICC line.
While I was resting, the dietician we had been waiting to speak to joined us and she was quite the character. Our meeting wasn’t very eventful, although I did get some rudimentary information about what to do if I’m ever possibly neutropenic. Truth be told, I was so preoccupied with this PICC line issue, that I didn’t really pay too much attention.
We were then told that Dr. Ashkenazi was out at a meeting until 1:00 p.m. so we thought we would jail break and go across the street to get some lunch. Right when we were about to gather up our stuff, I got called in to see Dr. Ashkenazi. The nurses simultaneously managed to track down the Radiologist who was shocked to learn that I was a cancer patient and OF COURSE my PICC line needs to be stitched in place. He told them to have me return to the radiology department where he would complete the procedure and stitch me up.
At this point, I SMSed Gaby and told him he needed to get over to Shaare Tzedek hospital. As amazing as Simone is, I couldn’t put her through whatever might happen to me after the procedure. We went in to see Dr. Ashkenazi and we were laughing and joking. When I sat down, Dr. Ashkenazi told me that what they thought might happen with my blood count did in fact happen and my white blood cells were now at 150. They were 5,000 the week before so now I am officially immunocompromised. This means I need to start taking shots of something called Neupogen in my abdomen once a day for four days. This is in addition to the daily shot of Clexane that I take in my stomach once a day.
My first thought was thank g-d I have a big fat gut, since these shots all have to be done subcutaneously. Basically, I need to pitch some fat and then give myself the shot. It’s not easy but I’m really used to it by now, so I was able to give myself the first injection at the day clinic. But there are some significant restrictions given my new situation and that includes being very careful about food, only eating cooked food and fruits that have a very heavy peel. I have to stay far away from people who are sick or might be sick, since I’m more susceptible to infection. Dr. Ashkenazi also gave me a prescription for an antibiotic, in case I develop a fever.
Right when our appointment ended, Gaby showed up and we sat a sad goodbye to Simone. We confirmed my appointment for RCHOP next Tuesday and then went downstairs to deal with the PICC line.
Fortunately, the Radiologist didn’t make me wait long, but it was very painful. The alcohol burned something terrible until the local started working and the whole thing took 20 minutes, but it was very annoying. I was really unhappy about the mess up and we went home tired and aggravated.
I had to keep my distance from the kids so I basically hid in my room in my PJ’s. My hair has really started falling out in earnest and my white sheets are now full of dark brown strands of hair. When they tell you that Chemo will make your hair fall out, they don’t tell you that your hair and head will hurt a ton until the hair is gone.
My scalp just hurts and until I lose the rest of my hair, there’s not much I can do about it. I think I’m going to just shave it all off on Friday so that I can get some relief.
They also don’t tell you the side effects of the Neupogen shot, although she did give me a handy pamphlet so I could see where to actually give myself the injections. The pain in my lower back woke me up at 3:00 a.m. this morning and I couldn’t get comfortable. My PICC line area was throbbing and I started looking online to figure out what was going on. I’ve since confirmed with my doctor that this pain is a normal side effect of the Neupogen and I just have to grin and bear it.
So, I went from feeling really, really good on Tuesday to feeling really, really lousy on Wednesday. And next Tuesday is RCHOP day, which means 10 days of feeling gross post-chemo.
I guess I was just hoping for a few more days of feeling good before getting knocked down again.
This morning, when Gaby left the house with the kids, I put on this song and had myself a little tired, pity cry. Then I got up, made the bed, got dressed, and started my day.
Thanks for all your message and tefillot. Please keep davening for a refuah for Lior Shira Batya Bat Chaya Yehudit.