Back to the past.. for a moment

View from the Four Seasons hotel in Riyadh. The hotel is pretty awesome and amazing views certainly prove it. New high rise buildings have appeared in the horizon. Of course the first thing I was searching for was The Hospital. I know where it is, but could not see it. Not at night, not in the morning. Could the hospital have vanished without a trace....? That would have been the very best option.

But no. Next morning I found myself sitting in a taxi driving toward The Hospital. I hate seeing it and nothing in or outside that hospital structure provides any comfort. My one and only task was to find the outpatient building (ok, same location, same floor, same room), see the doctor (nice to see ya... not), book the next appointment (AWWWW NO NOT ANOTHER ONE). Can we check your height and weight? NO. Blood pressure? Sure. 155/91 (I really and truly hate this place). Do you have fever? No. 36.7 C (despite of the fact that it was well above +40 C outside and I was boiling with heat and anger and disgust and fear). They probably will now document in the file that "patient was not cooperative". Go ahead, document what you want.

End result is that I will need to return to The Hospital in October. They want to do the final thyroid whole body scan. If it was just the cutting edge scan and no blood tests, no time wasting doctor's appointments, I'd probably be ok. The fact is that it's all inclusive, all comes in one package, same price for all. Once again, they will document that patient was reluctant to co-operate. I get it that they are trying to help me, but they too could be little more understanding and kind. I get it that it's a hospital and some people think working in hospital gives you the right to treat patients like dirt. Definitely not inform them of any delays. Definitely delay them even more if you can. Add to that being relentlessly rude and patronizing. Not all staff do that at all, of course. Thank God that they don't. 

Travel to The Hospital AKA torture chamber annoys me most. Waiting times piss me off. Queues everywhere are a real turn-off. Waiting areas are sterile, aged and tired and there are no seats. Then there is a sign "Do Not Wait in The Corridor". Well, smart pants, tell me shall I wait outside then..?!?

In preparation for the scan, low-iodine diet looks forward to meeting me www.cc.nih.gov/ccc/patient_education/pepubs/lo_io_diet.pdf. Thyrogen injections are eager to attack me with that very sharpest needle. www.thyrogen.com/ Awesome. I can't wait. Just makes me wonder how far I could push it with the low-iodine diet. How strict must one really be? What if I all of a sudden start craving for pasta, cereal, chips and all that Thou Shall Not Eat? One or two mouthfuls probably won't hurt? Once again "patient is non-compliant" will be documented in my file.
There are three more questions I need to answer too: What if I don't go at all? No scans, no appointments, no follow-up.What if I go, but walk out?What if I just don't go, cancel all appointments, scans, needlesticks etc.

I may come up with answers one day, sooner or later, before October arrives, but before that I may need to read my own survival guides I wrote in the blog in 2012 and 2013. Will I survive by reading my own survival guides?


 

Anxiety Attacks

Radioactive iodine: done. Treatment completed. Scans completed. Realization that time is an illusion.
I spent 3 days in Hospital- somewhere there in the distance in that photo above. After those 3 days I was out on pass for two days, and returned for Thyroid WBS. I don't have official report yet, but I know for sure it is clear.
CLEAR!!

One of the most awful anxiety attacks hit me when I was in hotel for those two days. It may have been the shock of realizing what had been going for the past few days. As if I had been imprisoned, with contagious disease. Radioactive signs everywhere.Toxicity. Traumatic. Pretty much everything was covered with bed protectors, those white pads that they also call incontinence pads. Disposable, sterile, windows high up close to ceiling. I was truly in a prison. Each time, when I was not yet radioactive and in isolation,  when I opened the door and walked out, I felt as if I was prisoner escaping. It was almost relief to return to the room again.
Huge concern for me was that I don't have the emotional strength to deal with this. I struggled with depression after my 1st encounter with cancer in 2007.
Food was low-iodine, it was tasteless, colorless and not at all appetizing. Disposable cutlery, plates, tray. Cold soup, cold corn, always the same pasta, cucumbers and lemon slices. Cucumber salad was sealed in a plastic container, so tight that I always managed to break it when I attempted to open the lid. Totally burglar proof! No dairy, no bread, no salt. Here I was thinking, reading the menu that I would have tasty pasta with spicy sauce, lemon pie and lentil soup. Well, this is what it was:

I lost weight, not huge amount, and regrettably that extra weight has returned. Never mind the weight, cancer is dead and gone. I was still angry. Blood pressure reflected this. 188/110. Angry Birds. Coffee shop in the hospital served me delicious cocktails and coffee, which was strong and gave me palpitations. One good thing, among many others, that resulted from hospital stay was that I quit drinking coffee and black tea. Since then I have had green tea. Craving for coffee- no, that feeling was left behind in hospital.
Most of the staff members were ok, but then there were those who were clearly afraid of me and my temper tantrums. Then there were the patronizing ones. Nasty ones. One morning it appeared that no breakfast would be served. At 10am I left my room, visited the coffee shop and  bought cup of coffee and strawberry cocktail. I returned, stopped at nurses' station and yelled at the ward clerk. Who is in charge of this shift???!!! When I get angry, I get upset and start crying. This time was no exception and all the dignity I had walked in with vanished within seconds. Charge nurse followed me into the room AKA cell, and offered to bring breakfast in. Same old stuff, and I said no. Soon afterward, physician came in with the same nurse and asked if I need to see a PSYCHIATRIST? Do I? Hell no. What's going on with these people? And what is going on with me? Just because idiots forgot about me. In hindsight, perhaps I could have chosen an entirely different approach. What happened to manners? My mom certainly did not teach me to behave this way. At the time it felt very right, justified- how could you guys leave patient alone in the room, not asking even once if they are ok!!!
The truth is I don't have a bad attitude and behave like this all the time. It was all reserved for this occasion.

Later that day my friend rescued me from the jail and took me for lunch in Steakhouse. Cool! I still had to stick to low-iodine food, but it was fantastic to get out. Thank you K, it was one of those lunches I will never forget.
I went to bed happy that evening, woke up at 4am thinking I was in my own bed.

Nuclear med tech K (yes, another K), walked in next day, and said it is the DOSING time. Ok. She was followed by another tech. K was smiling, looking cheerful and optimistic and I told her she was the first genuinely happy person who had entered my room. Premed was Zofran (ondansetron).
55mCI of radioactive iodine 131, T 1/2 eight days or so. Two capsules, not much different from any other capsules I have seen in my life.. pretty anticlimactic. Setting up the scene took longer than swallowing them capsules. Right after that all the nuclear medicine peeps left the room, as if they had not even been there.  Geiger counter must have shown some awfully high reading.I wasn't allowed out of my room. First few hours went, clock was ticking. Nothing happened. I did not glow, my pee did not glow. I was not fluorescent green. :-/  No superpowers, nothing.
I thought "This isn't so bad. This is going to be just fine." And it was for 2-3 hours. Incredibly strong wave of nausea and vomiting kicked in and I spent most of the evening walking between The Room and restroom. I wanted painkiller- they brought me Tylenol. I took another Zofran from my own supply. I wanted an injection for nausea, but I was told no one can enter the room. I asked for sleeping tablet. It took its time to reach my room. By then I was annoyed, decided to take a shower and went to bed. Slept without the tablet. Angry. I was much closer to breaking.
Following morning I was told I am no longer radioactive and I can go home- but that I'd have to return after weekend for Thyroid WBS. Great, awesome, but I felt fatigued, sick and anxious. It took forever to book hotel, gather my thoughts and belongings, get a cab and transfer to the hotel. Sweet freedom.
Arriving in the hotel was weird- I felt I had no right being there. I had no hair. I was pale and sick looking. All these five star rooms and restaurants. My place was still in that prison, but at the same time I needed to go to a place where I didn't have to feel anything, or so I thought.

Anxiety attack: I crawled back into bed, took Valium, watched TV. Got out of bed, paced around the room, looked outside from the 33th floor and thought WOW, I am no longer in that awful prison cell.

Anxiety. I slept a bit. Went out to supermarket, but short walk there and back wiped me out, and I returned feeling shaky,sweaty and nauseous. Shower. More TV. No appetite. Everything tastes of metal. I felt as if I was falling apart and completely shut down. I took another Valium, knowing that my body is already so full of drugs that I may not need more. I wanted to cry, but could not. Should I really have accepted or rejected this treatment? I signed that consent form, after signing read the small print.

At the same time there was a feeling of lightness, silence, hope. At the time I did not yet have the scan results, but I felt that cancer was gone. It was truly gone. We killed the sucker! Could my horse, who died on November 21, 2012 taken this disease with him? Physical wounds may have healed, but what remains is deep and actually quite painful- question of how did I in the first place get myself tangled up with cancer?  I look over at all the bottles of pills on the table and I just want to cry; how  did my life get like this?

I have been through a life changing experience so now it is time to change my lifestyle to reflect that.
After-effects: my memory seems worse- or perhaps just more selective? I don't sleep well. I lost quite a lot of hair- combination of treatment and stress, I think. It was getting ridiculous, waking up in the morning, more hair on the pillow. That itself made me feel sick so I shaved it all off in hospital. Bald patches still keep shining through, but at least it is growing back in some parts. Black and grey! It was a very plain mousy brown before. My arrogance that wigs are for wimps has turned to humble pie. I do own two wigs, courtesy of my friend KG. Scarves and hats of all types have become best friends though-not the wigs. I realize now that I also chose to have treatment because I was hoping it would kill me, if the disease itself did not. Neither happened. I pushed forward, and I'm back.

Those days have gone, difficult and challenging moments passed. Time truly is an illusion. It's a blank slate now - new beginning, endless possibilities. It will work itself out somehow.

"The day will pass, like many other days that have been and are yet to be. With its various ups and downs. And lots of crazy and wonderful efforts of people to read into, and express, deep and significant meanings and insights. Many will be inspired, others will be afraid. Some will hold their breath while others will not even notice or care."
- Shiv Charan Singh