Tuesday, May 11, 2021

Day 11: My Trials & Tribulations

The previous post can be found HERE.

When I last left off, I was being referred to an oncologist.

It's December 7th, over three months since the CT Urogram showed I had enlarged lymph nodes in my pelvis and abdomen. I'm in the waiting room of the oncologist's office. I'm on edge, nervous as to what is going to happen. There are small, 3-inch striped candy canes in a dish on the counter. I take four and put them in my purse. Then the door opens and my name is called. After my blood pressure and weight is recorded I'm led into an exam room.

My oncologist was an older woman, probably near or past my age, who attended medical school in Putero Rico. She had been working in oncology and hematology since the early '80's. I gathered from her extensive bio that she had been working with cancer patients for a long time.

She asked me to describe my journey to her office. I talked about the double sifts, drinking all the energy drinks, finding massive amounts of blood in my urine, etc.

My oncologist hands me a copy of the PET scan report. I try to grasp the numbers I'm reading in regards to how much the lymph nodes grew in the two-and-a-half months between the CT Urogram and the PET scan on November 11. I learn that not only is the growth size important, it's also how much sugar the lymph nodes absorb.

She explains the PET scan. "They give you glucose. Malignant cells take more glucose. The normal lymph cell uptake of sugar is around 2.5. With cancer cells it's way more." I can see the numbers listed beside the individual lymph nodes described in the report. The oncologist tells me, "Some of the sugar numbers are 24.0 to 25.0. This I don't like. Normal lymph should not take so much sugar." Not only the size, but the activity she didn't like.

At the very end of the PET scan, the report said the following:

Excerpt from my PET scan report.

My oncologist tells me she suspects I have lymphoma, based on the PET scan and how quickly the lymph nodes grew. She categorized what she suspected as "fast growing." From what I was hearing and trying to wrap my head around, fast growing lymphomas can be cured. My oncologist tells me the other types of lymphoma that are slow growing, from the time she started medical school to today, cannot be cured, but patients can live a long time. 

 She tells me the treatment will be chemotherapy, or radiation or both. She mentions a female patient who went onto have five children with lymphoma. She did add though, "It could be something else that has invaded the lymph. The only way to be sure is to do a biopsy." My oncologist also added that at some point they would need to get a bone marrow sample. I already knew what was involved in getting bone marrow extracted. When she said that my mind went, Holy shit! How will I manage that and work? How long would I be hospitalized for that? Everything she told me I related to my work and having to tell my patients I would not be able to see them that week.

Interpretation of the Pet Scan
"No other hypermetabolic abnormality is identified..." What I would understand this to mean later is that the PET scan did not show any other area in my torso where cells were absorbing large amounts of sugar. The scan did not show an originating tumor area. This is why my oncologist initially suspected I had lymphoma.

"Nephrolithiasis." That's the 8mm kidney stone that was broken apart via the lithotripsy the day after the PET scan.

I was in tears by the end of the appointment. I was overwhelmed by what I was hearing. I could not process it fully. I was stuck. I didn't know what to do. I hung onto my oncologist's words

"it could be something else that has invaded the lymph"

applying magical thinking that this could be something other, and that my enlarged lymph nodes were not cancer. Still, December 7 was the last day I had any kind of candy, sweets, chocolate or other forms of commercial sugar.

There was a ticking time bomb in my body and I hung onto that magical thinking, that this was something other. These lymph nodes were large back on August 31, when the CT Urogram was taken. I didn't have a copy of the CT Urogram report but the PET scan referenced the location of every enlarged lymph node found in the CT Urogram. All had increased in size. The PET scan also showed more lymph nodes that had become enlarged since the CT Urogram, clearly indicating that the ticking time bomb had continued to spread during those three months. There were about two handfuls of lymph nodes that were enlarged.

I tried saying out loud, "I have lymphoma," but it never felt right to me. I didn't know why that was. Magical thinking. Over the next several weeks, I mulled over in my mind what options I had. There were so few. I worried I would not be able to keep my house if I could not work. That overshadowed everything. 

Coming to terms with the fact that I was sick and needed to move forward on finding out what I had took a couple weeks. Once I had accepted it, I scheduled the biopsy for the first available appointment.

When I called, the first available date was January 19. It would be a CT guided biopsy at a radiology center in Encino. I had to be there at 9am. A friend in my mobile home park would take me and pick me back up.

Fortunately, this date meant that only two of my patients would be impacted. I would be able to move other regular Tuesday patients to another day. I took notes on the preparation I had to do, because this facility did not have a set of instructions they could email me. It was all over the phone. No food a certain number of hours before the procedure and no water two hours before. I asked if I would be able to work the next day. I was told, "Yes." I would be under a general anesthesia for the procedure. That was the plan.

When I was checking in, an RN went over my new patient form and my health history in detail. There was a video I had to watch all about my radiologist, this biopsy procedure and what to expect. She also went over most of the same information that I was given over the phone for pre-op, except this time, there was this additional piece of information that was new. They RN told me that I would not be allowed to drive the next day.

Woah. Back up. No one ever said that in the initial phone instructions that I would not be able to drive. I told them that I only had today off from work. I could not call into work right now and tell them I can't work the next day. My company did not know I was getting a biopsy. I couldn't just suddenly tell my supervisor, oh by the way, I can't come into work tomorrow. I don't do that. That's not me. I had patients and their families that were counting on me to show up.

The RN then said to me that I would have to reschedule the procedure. I told her there had to be another option. I could not reschedule. I could not delay waiting another two or three weeks to find out if I had cancer or not.

She went to speak to the doctor. The doctor gave me the option of being awake during the procedure and using a local anesthetic instead of a genearal. I replied, "Let's do it."

The lymph node the radiologist was going to biopsy was one of the largest lymph nodes, over 2 centimeters across. It was deep in my right pelvis area, close to the right lilac bone. The radiologist would be going through muscle tissue and hopefully avoiding nerve tissue. I learned that they could not see nerves on the CT scan.

I liked the fact that they had little changing rooms with lockers in them for your belongings. You took the key to your locker with you into the procedure room. The RN who took my medical history was with me the entire time, from intake to recovery room. The CT technician was very nice, too. He explained the steps that the CT scan would go through. Again, I would have to have my arms over my head for the procedure. I would have to try not to move. If I moved at all, especially after the needle went in, that could screw up trying to target the lymph node.

First, the CT technician did an overview scan of my pelvic area so they could get a baseline, or starting point. Then there would be more scanning for placement of the needle. Afterwords, the radiologist started to numb up the area of my pelvis where he was going to insert the needle. Then he waited for it to take effect. I did not feel the initial incision, but when the doctor first inserted the needle and started to go deeper into my body, he must have hit a nerve. I really felt that. My lower body jerked reflexively. The CT technician tells the radiologist my body moved too much. The needle came out. The technician had to start over.

This time the radiologist administered way more local anesthetic and waited. He inserted the needle again and I didn't feel any pain or discomfort. I concentrated hard on trying not to move any part of my body and to lie as still as possible. The CT tech explained that the doctor would then be inserting the instrument through the needle to take the biopsy. Once the instrument reaches the targeted lymph node, the radiologist will snip the biopsy sample. He told me that I will hear a click of the instrument. The radiologist snipped six samples. I could sense it each time the instrument went into the needle. I heard the "snap" it made and the instrument being pulled back out of the needle. I felt it each time.

And that was it. The procedure was all done. The RN told me I did great. I asked how long I was on the table. The CT technician told me I was on the table for about 35 minutes. It seemed like it was much longer. When it came time to slide off the table to the gurney, I could not move my right leg. The radiologist must have put enough anesthetic in my abdomen to take down an elephant. I had to manually drag my leg with my arms onto the gurney so I could go back to recovery.

I was famished. I asked for and drank three little boxes of cranberry juice. They kept offering me wheat snacks but I declined. After a half hour, I tried to stand. I was still too wobbly on my legs. The RN brought me my phone from my locker and I called my friend to let them know I'd probably be ready to go in another 20-30 minutes. I was able to stand and walk on my own 20 minutes later. I got dressed and waited for my friend to arrive to pick me up. And that was it. The biopsy was over. I could relax the rest of the day. I was told I needed to keep the bandage on my incision for a couple days and to try not to get it wet. I did not have any complications from the procedure.

Before I left, I found out that with the lab company my HMO uses, the analysis would take about a week to get a report to my doctor. My next appointment with my oncologist was scheduled for February 2. I went back to work the next day and counted down the days to February 2.

More to come.....

Day 11
I had another very good day. No side effects of the Gemzar on Day 8. I spent the day doing laundry and getting some meals pre-cooked and frozen for the not so great days to come. Later in the afternoon, I worked on getting Mother's Day gifts wrapped to go in the mail to my family and my friend Bobbie. When I was done, I called Ricky for our regular nighttime phone call. The only post office in the San Fernando Valley that's open until 7pm is the Van Nuys post office. I know I have about a 20 minute drive across the valley to get there. I make it with 10 minutes to spare. My family will get their gifts in time for Mother's Day and Ricky and I say goodnight.

Since I'm now on the east side of the valley, I decide to do some shopping at the two-level Tar-jhay (Target) on Sepulveda Blvd. The clothing brand, Universal Thread, has v-neck T-shirt dresses for only $12.00. A deal. I'm fussy. I only buy v-neck tops. I had already purchased a few from stores on the west side of the valley. I wanted a few more in my size. These were not going to be out in public type dresses for me. I haven't worn a dress since 2001. For me, these T-shirt dresses were perfect to lounge around the house in. Comfy clothes, like pajamas. I don't believe I'd been in this particular store since I moved into my mobile home in December 2018.

This Target has a five story parking garage attached. If you drive up to the third level of the parking structure, you can walk straight into the second level of the store. This is what I used to do when I regularly shopped here. I park very close to the garage elevators and head into the store. I realize that what I'm searching for is on the ground floor. I take the escalator down and locate the Universal Thread section. I find two more T-shirt dresses in different colors. I'm pretty happy with getting two more dresses. I checkout and head for the parking garage.

I pass the parking elevators and can't find my car. I become discombobulated. I was pretty sure of where I parked, but now I start to doubt myself. It's past 7:30pm. I'm in a section of the garage where the lighting is not great. I'm standing in an empty parking spot, turning myself in different directions, still looking for my car. I convince myself I must have parked slightly away from the parking elevators. I take a step and next thing I know, I'm on the cement on my hands and knees and my left knee is screaming in pain. I try to get back up and can't.

A young couple that saw me fall comes rushing over to help me stand. Finally upright, I'm unsteady and shaking, my mind totally focused on my screaming knee. I try to take a step, putting bending weight on my left knee and instantly know my knee is fucked because I cannot bear the new onset of shooting pain.

When I exited the store, I had forgotten I was on the ground level and my car was on the third level of the garage.

Watch this space. There's more story to come.
Sprocket aka Betsy


Cheap Guy said...

Anxiously waiting to hear more of your "adventure" Betsy!

westy40 said...

Gosh, I hadn't been to this great blog since the Lazarus trial.
Just reading the update, Betsy. I am so sorry you're facing this new medical challenge, definitely sending out prayers. I sincerely wish you all the best!