Today I finished the last of my scans: my chest, abdomen and pelvis. I woke up early and got bloodwork for this week’s chemo and downed two disgusting bottles of Barium in 13 minutes while driving from one hospital to the next. *I prefer bloodwork at one place and the scans at the other.
Anyhow, while driving home from the scan I received my daily ding alerting me that my results were in. Up until today, I usually avoid the pings at all cost but I figured, eh.
According to my knowledge of Google and Websters, I believe I received another good scan. The brain last Tuesday came back perfect, Friday’s results were “stable or smaller” in some areas of the spine except for L3 which is still healing or not from the static radiation- which I am told is to be expected and today: looking good. Not certain if NO evidence of disease based on my gait, but maybe it’s close? Under control?
So, now I will likely move to every 3 months for scans which doesn’t help with me wanting to travel, but it does give me more freedom than I’ve had in years.
THANKS MEDICINE and whatever is in the universe allowing me to see another day of my children (not my son) hating my guts every other day.
I realized today that the waiting area for anyone getting an MRI looks like a group of prisoners after intake. Each of us sitting in our faded grey robes that barely stay on, paper undies and blue gripped socks- staring at the one TV hanging on the wall for entertainment. Some of the new people brought back to go nowhere, that get to hear the same directions: take everything off, follow the instructions for the gown on the wall and put your things in a locker; take the key with you.
Now when I was taken back to the cell block I was immediately informed that they were running an hour behind. Using common sense, I asked simply if I could then go back to sit with my mother and when they would be less than ten minutes, they could come and get me. You’d have thunk that I asked her 9×7 the way she stared perplexed and said, “that’s not how it works. You have to wait here for your turn.”
After a couple rounds of me trying to tell her that waiting is waiting and clearly there is no room in the block, she just tossed me my robe and said get dressed.
About thirty minutes later I was taken back to begin my IV. As I was waiting for the nurse to tape it into place, she went to look at the screen with my information. “Oh… mmm… you’re gonna nap.”
Sitting about fifteen more minutes at the crammed block, I was then called to go back. This nurse asked me if I had to go to the bathroom- a loaded question. By that point, I’d held it in so long that I said I was fine. She then informed me it was going to be a long test, so off I went escorted to make (just a sissy).
Now, I’d taken a whole Ativan at 2pm and I was somewhat tired when I was locked into position. The room was very cold so I opted for the heated blanket and once again chose Disney.
After 40 minutes- I began to unravel and I squeezed the emergency ball, perhaps in part to the fans within the machine no longer blasting and keeping me alert. With just a quick visit from the tech to tell me I had another 25 minutes, they removed the blanket and switched to Christmas music per my request.
While I felt somewhat calmer, I tried to keep myself awake (still with eyes closed) for as long as I could, but this particular tech had the music so loud that I could no longer hear the noise from the machine and for whatever reason, it continued to lull me in and out of sleep.
Finally the tech came back in to get me out and I returned back to the women’s dressing area. Dazed and confused I waited another fifteen minutes for the disc, as a new set of women in grey surrounded me.
For whatever reasons, my movements are irregular. There are times I can handle my business prior to work and times I must wait until afterwards. Most of the time it should happen before work, but I am always rushing and that causes me to go mid-day which is hit or miss in terms of going home or not. All this means: today I done fucked up.
Now, I always try to make my medical appointments before or after work because I hate to be out. It is because of my devotion to work, that I may need to go under the scalpel.
My appointment was scheduled for 3:45pm; my mother came to get me at 3:00pm. I had texted her prior to let her know I must go home to make.
Unfortunately for me, I didn’t have time to dre on the toilet because I had to hurry and freshen up since my mother was in the car waiting. Additionally, I also had to pick up my contrast for next week’s scan and I couldn’t just sit around and wait for the rest of the family to deplane.
When my mother and I entered the elevator to go to the office, I told her that I was going to have trouble not letting anything escape and that the head was crowning. Despite her suggestion, I simply could not risk another shartident and in we walked to the office.
As the nurse took us back to the electric table, I became more and more concerned about the impending finger penetration that would undoubtedly cause an eruption in the doctor’s face- literally.
Dr: (Gesturing to the table) Okay Rochelle, you know what to do.
Me: Nurse, drop your pants and lay on the table.
Nurse: (Sympathetically looking at me) You can do this.
Me: (Dying. Dying. Dying. Leaning forward on my elbows; squeezing my ass as tight as possible- knowing how misshapen it must look from behind)
Dr: You have to lean on the table.
Me: I can’t.
Nurse: (Showing me) You can do it; just like this…
Me: (Puts up a fight for a few min.) Just kill me.
Dr: (Moves table so that I have no choice but to put my chest on it)
Nurse: There, like that.
Dr: (Proceeds to try to pry my toosie apart) I need you to relax.
Me: (DYING) I am.
Dr: I need you to take a breath; there. Now push.
Me: (Looking at my mother) Nope.
Dr: I need you to push; I can’t see…
Mother: She’s afraid she will shit on the table.
Dr: (Pulls out the classroom hand pointer sized Q-tip and puts the table back to its original position) I’m afraid I can’t really see anything since you were (shows me) like this. If you’re still having symptoms, we have no other choice.
Mother: How long is the surgery?
Dr: Fifteen minutes.
Mother: (Looks at me) Oh, it’s nothing.
Me: Okay, we’ll do that.
So, since I was unable to shit before work and because I had a meeting at lunch, I can no longer have one of my chemo drugs in order to have my guppies removed via surgery.
Today I found out that my brain remains clear. It’s been one year that I’ve been without my five brain mets. Mets must be a softer word for tumors since they’re in a very shitty territory. I think everywhere else we call them tumors and possibly, lesions. Regardless, none are in my head and thank medicine and GD for that.
I remember when I did have them and the sad part is, I was too busy forgetting any incidents around them to mention a problem. For instance, before the bike incident where I lost my balance going around a small curve, I had been “blacking” out for short periods of time. We were in Florida at the time and I was teaching remotely. When I would wake up or stand up, often there was this bright light that caused dizziness and I would either fall backwards on the bed or floor. One time in particular, I had fallen on the floor and just thought it was because of too much sun.
When I called my son by another name, that’s when I realized it was time to head home. It was there, that I was opening my daughter’s shades and fell backwards- laying on the floor. I can’t recall if I was sleeping for a little or if it was seconds, but I remember the falling part and laying part.
With those few occurrences, I then remembered that my doctor was concerned that I had not gotten a brain MRI- even though she had given me the script prior to leaving for Florida. Of course, had I known that the natural trajectory for this disease went to the brain, I’d have gotten the MRI from the get go and perhaps it wouldn’t have been as bad.
For those wondering why my doctor didn’t have the MRI’s done earlier of my brain… its because I was afraid of the MRIs. Little did I know I’d be in the for every section of my body every six weeks….
Anyhow, according to my doctor, everything looks “clear”. Now let’s pray that the next two scans are as wonderful.
Tonight was the second time I’ve eaten outdoors in a restaurant and the waiters were not masked. I guess I should say, since the mask ban is over and the decision is left to each person, I’ve eaten out twice.
I’ve got to say… it’s a little weird to be out and seeing people without masks. Sure, you could say, “seeing people themselves again,” but I’ll stick to my initial phrase.
Yes, yes, we all need to resume life. Well… some of us will have an easier time than others to resume their happy, go lucky lives. I, for instance, will never be the same mask or not, but I also cannot risk any complications. For example, I’ve had an infection for weeks that used to take a day or two to clear (I’m talking hang nail gone wrong). Prior to that I had a stye in my eye for months, nearly causing to twice lose my trial access… (the first time I went to Fox Chase, the head of the trial failed to reacquaint herself with the updated protocols and I was denied the ONE TKI drug that may have helped me… ) Bottom line: I heal as well as 95 year old great-uncle Harold.
As I was saying, it’s weird seeing servers without masks and I’ve got to say… I don’t care very much for it. In fact, I’d like everyone who should come in contact with my food to be masked (gloved too would be a smidge better) because when they are carrying my food around the full faced crowd of patrons and then coming into home-plate at my table… they TALK TO SEE WHO GOT WHAT WHILE MY FOOD IS ON THEIR ELBOW SHELF…spitting (gotta be or the C would never had spread in 2020 simply by breathing).
So… it just feels weird to me… kinda like Hedonism and right now, some people should cover up for the well-being of others; mainly, waiters.
I’ve always been this way. When I was younger, if I were walking someplace and saw a rock to kick, I’d kick it. The moment I kicked it in a diagonal direction from where I was going… I would continue to walk straight and usually within fifteen seconds of walking away from “my rock,” I would turn back and try to kick it straight again.
My point is: I’ve never been able to let things go, gd forbid… forget, nor move on. Any (noun), no matter how insignificant, would cause me as much turmoil as something consequential.
Case in point: my bedspread.
This evening while I was going to de-bed my pillows (sorry… I have “de plane” on my brain), I noticed the tag of my spread on my bed. Then, I noticed that the sides of my bed barely had spread.
Immediately, I lost my shit. How fucking hard is it to make a bed? Huh? It’s not rocket science and yet so many people in my presence can easily fuck it up- causing my low white count blood to boil.
Does everybody who makes my bed (I’m talking college student who comes T-F and housekeeper- who must be pissing others on the ML off!) not know that anything with stripes runs north and south? Tags go on the bottom. Nobody pulls the spread up over their heads and past the back of the headboard, and that is how much of the spread I had (I since the soon to be graduate did not know to (or bother) check that the sides of the bed were not covered!
Further tossing me into a tizzy was then spotting my two poufs, stacked in the corner of my room and then seeing my club chairs arrested against my WHITE PANELS!!! MY WHITE PANELS WHICH SHOULD BE BUNCHED TIGHT TO THE RIGHT AND ARE NOW SPREAD MIDWAY ACROSS MY WINDOW BY HER 6’1″ HANDS! FOR THE LOVE OF GD, EVERY NIGHT I FIX THE ARRANGEMENT AND EVERY MORNING SHE CONTINUES TO INFURIATE ME.
So much so that this is what I sent her this evening.
Since I can hear it now, no… I don’t have bigger problems to worry about! And, no… in the scheme of things I still cannot stop who I am to the core… a harper.
The other week I was at PT- aka WOT. I’m there because I cannot lift my right arm and I cannot bend to put on socks or shoes…I call it a waste of time because I am not one to do homework. Additionally, I don’t even use the new Peleton 30 feet from my bed so why would I do any physical activity?
Anyhow, there was this youthful man being told what to do by our shared therapist while I was laying in wait on the table and the entire time I could hear him say….
I don’t think this is right…. Am I doing this right? ….Can you show me again?….. It’s still not feeling good. I guess I’ll never be able to flex my toes (something as stupid like that) 100%. I think I’m gonna go…. I’m a little depressed.
Meanwhile, my therapist returns to my side and sees that I am infuriated by the twat and I say, Oh, poor Chris! Wah Wah!! Shut up you fucking p.y and do your gd-damn exercises like a man! Oh no… woe is me, I can’t unflex my right toe!
Now, I get that people need PT to resume normal activities, but I’m trying to survive CHRIS and I AM NOT FUCKING COMPLAINING SO SHUT THE FRONT DOOR!
I’l start with, it was my very first time purchasing a vacation rental 100% on my own. I’d asked hubby to check it out prior to me pulling the trigger on the two contending choices but he was always busy. By the time he saw it, I’d purchased it and it was T-4.
Sure, I saw the steps in the top photo and I was only a little concerned. I’ve seen split levels before and there are typically 4-5 steps from floor to floor. Unfortunately, I did not see the “extra” set of steps going even higher until hubby pointed out the effing steps.
Hubby: How are you going to climb the stairs all the way to the top? You couldn’t make it at your friend’s house at the shore- why is this different?
So, I emailed the VRBO to inquire about the steps but I did not see their reply that, “the steps may be a problem.”
Since we were leaving for Florida in 15 hours, I replied, “I’m sure it will be just fine!”
When my mother and I were about 400 feet away, she noticed all the neighbors sitting outside on their corner stoops. I should have simply turned the car around at that point but I made the second mistake of continuing to our destination.
Mistake #3 was that I failed to ask about how one enters the townhouse… and to my dismay, it was 7 stone steps.
At this point, it was torrential downpours and my mother is OOHM- ready to kill me. Meanwhile, I am sitting, trying to keep my legs bound tight, because unlike she who used the bathroom prior and post flight, I still had not. Try as I might, the vision of my mother dragging all of our luggage out of the toy car and up 5 flights of stairs while drenched from the pouring rain, was just too much for me and I had to exit the car. Once again, I lost to my own will and proceeded to let it rip in the rain.
After I changed into what my mother deemed, “that’s a lovely outfit,” we told the owner of the VRBO that the steps did indeed do me in.
VRBO: I have another place; it’s gorgeous and all new…
En route to house #2, and my mother would not get out of the car.
The moment the VRBO lady sent me the address to the new home, my mother and hubby (on the phone) were busy looking at the photos.
Mother: It has a wall. That usually means its next to a parking lot or worse.
Me: She said it was gorgeous, all new and while the neighborhood is being gentrified, it’s a nice area and very quiet.
As we were turning the bend per Waze’s announcements, I could see the neighborhood take a turn for the worse, and knew that no matter how nice the inside of the house was (and it was), there was zero chance we’d be staying there.
It was at this point, I hadn’t been to a toilet in hours, I’d just had chemo the day prior and I was exhausted, and now panicked. Reason being, I’d ordered Instacart to house #1 thinking it was the destination, and now I had no place to store the yogurts and butter that we were toting around.
Hubby: I sent you both 5 hotels you can go to.
Sister: I don’t know why you didn’t just stay at the Embassy Suites; it was right on the beach and we stayed there; it was nice.
Me: I’m not staying there! I saw it and no thank you. No, mommy and I will find a place.
Mother: Are you kidding me? Where will I walk? I can’t walk here? I’m in Kensington! Rochelle, you can’t just look at a place online and rent it without seeing it.
VRBO: It’s all new; this is where I live; it’s very safe and quiet.
Me: I think its beautiful but my mother doesn’t feel safe. You don’t understand her but I need a refund. My husband is trying to book us a flight home.
VRBO: I want you to be happy. I have one more house in Lauderdale by the Sea. It’s worth $1.5 and its gorgeous. It rents for twice as much but I can give you a deal.
When we drove up to the street, I prayed that this would be the house I could store my food, and it was. Three times a charm! First, I actually feel as if I’ve died and gone to heaven.
It was now 5:43 pm when I texted the VRBO to let her know that this would suffice…
Well, the realtor must have figured out between house #2 and #3 that we were Jewish because she texted me this:
*I wouldn’t be me if I didn’t note that this weekend is the Military Air Show. That means every 9 min. another jet breaks the sound barrier causing our toy car’s alarm to sound and me to have PTSD- but what’s the sound of war to get in the way of my happiness?