Thursday, January 12, 2012

back to reality

For the last month I've been able to live in a tiny bit of denial and pretend I'm a regular - albeit, out of shape - person to the extent I allow myself that fantasy. I got up early, I stayed out late, I flew on planes, crossed international borders and climbed mountains. I was also bumped from a flight, evacuated from the most heavenly place I have ever been lucky enough to visit and a passenger in a van that was run off the road into a ditch. I constantly bumped up against my own limitations and challenged myself to go just a bit farther and surprised myself in the process. But I also had my frustrating moments where I mourned for the trip I had originally dreamed about and for the return to full health I was so desperately grabbing at which often felt just beyond my reach. Adventure travel at its best because where is the true adventure in a vacation that goes exactly as planned?


For anyone willing to listen, I will tell you story after story about the ups and downs, the things I saw, the food I tasted (love my new taste buds) and the fascinating people I met along the way. Not to mention forcing photos of all of this on anyone I encounter. But for now, I need to talk about the last step in my treatment. It has been emotionally jarring to be back in the world of hospitals and tests and treatments. I went to what I believed would be my first radiation treatment yesterday by myself. I thought I was ready for it. I consider myself physically and mentally tough and consequently, I sometimes underestimate a challenge. I went into the office in the morning and then took the subway down to the clinic in Chelsea where I will receive my radiation therapy. I had previously never been to this particular clinic as I had met with my radiation oncologist and had my simulation at their other location at Union Square. Everything was new and I went alone. A mistake, I admit. I didn't have my insurance card with me and felt out of sorts at the registration desk and felt very lonely in the waiting room filling out the now-familiar forms about my medical history. It didn't feel right to be back at a starting point again and I felt the same bubbles of anxiety about the unknown I felt way back in April when I received my first mammogram. I don't know what I was expecting but it wasn't this.

The wait was long but I am used to this and tried to soothe myself with a book I struggled to concentrate on. Everyone else in the room looked very old and frail. Sick. They all had their hair. They seemed to know the routine. Everyone knew their names. When the receptionist left for lunch she asked me if I was waiting for someone. This was the same woman who had me fill out the forms a half hour or so earlier, she claimed she didn't recognize me with my beanie on. I was chilly and put it on for warmth. I waited some more and finally someone called my name and I was taken to a changing room and handed the nicest hospital gown I've seen yet. I swear it was made of seersucker and it had long sleeves! These rooms are always freezing so the long sleeves felt like a nice bonus. I locked my things in a locker but kept my Kindle as I rightly anticipated another long wait in the next waiting room. I was right but I wasn't given much of a chance to read.

A guy around my age soon came in dressed in street clothes carrying a purse. He greeted me and I said hello politely and tried to return to my book. He sat near me and was intent on striking up a conversation - asking me how I was feeling, how I was doing and telling me he was waiting for his mother who joined us a few minutes later. Oddly, she asked if I was from Brazil and commented on my accent. Maybe I picked up some South American inflections after all my time in Argentina and Chile I thought as I tried to replay what I had just said in my head. No, this woman was just confused.

After a few minutes the son asked me for my number. I was still trying to read my book, calm my nerves and not think about the unknown beyond the door on the opposite wall. His mother was sitting next to me and had just been telling me about her pancreatic cancer and had opened her gown to show me that her skin was not burned (one of my great fears of radiation). "Are you asking me out?" I blurted out in shock. He said "yeah, why not?" It was awkward. I did not want to go out with this guy. I was barely tolerating having a conversation with him in the waiting room and now he wants to call me? He insisted so I gave him an email address instead, an account I rarely use. I didn't know if I should feel flattered or insulted. It was just strange and got even more strange later when I saw him again when I returned to that little waiting room and he introduced me to his girlfriend. I was raw enough by the newness of the whole process I did not need strange men asking me for my number and then subsequently introducing his girlfriend. I have to go there every day, now I have to worry about avoiding a creepy guy.

When my name was called and I was able to escape the bizarre situation in the waiting room I was given an introduction to the process and asked to lie down on the table that held the mold they had made of me last month. I had to remove my arms from the sleeves and was told they would keep me as covered as possible. I told them it didn't matter at this point since they had to move me this way and that to get my tattoos and the lasers and the mold all ligned up properly. My head was turned away from the radiation point and I stared at red lasers on the far wall and concentrated on not moving. The machine clicked and whirred and at a couple of different points the technician came in to make adjustments to the machine. I hated that I had to keep my head still and couldn't see what he was doing. It took 15-20 minutes and then I was told that was all for the day - just x-rays, no radiation today. I was a little disappointed to be honest. I asked if this meant the session did not count as one of my 30 treatments and he said not to plan any vacations or trips because I can't be too tied to that schedule. I'm not planning anymore trips but I admit I was disappointed to hear there is a possibility (even if slight) that this could stretch longer than the forecasted six weeks. Because that is what I was told: five days a week for six weeks. Yes, that is every working day.

I changed back into my clothes and waited for the nurse to retrieve me. He then rattled off all kinds of practiced information that washed over and around me but didn't really seep in. I felt overwhelmed and slightly numb. Ready to cry if provoked because I did not want to be back in this world of limitations. I was given several pamphlets and sheets of papers and a few business cards and a number of names were thrown at me. I stashed it all in a folder in my purse and was sent on my way with yet another piece of paper to take to the lab for baseline blood work. It had been over a month since my last blood work was run.
And then it was over. I had a card instructing me to return today at 4:30 pm with instructions not to arrive early because it will just make for a longer wait. I'm going alone again but this time I'm not worried about that part. I've seen it, I know what to expect. This isn't something I feel I can ask for volunteers because it is every day, a heavier time committment than chemotherapy.

The list of anticipated side effects is not as lengthy as it was with chemo and fatigue and changes to the skin of the treated area are the most likely. I was advised to start wearing sports bras and that running, weight lifting and stretching exercises may be too strenuous. I don't want to slide back into a sedentary lifestyle but I will listen to my body and respect my own limitations.

What I need right now is emotional support. I am feeling a bit of whiplash being thrown back into treatment and also feeling very lonely. I came home to a small disaster in my apartment. At some point some other tenant backed up their drain and it exploded in my kitchen. Exploded. My rugs were stained and one is ruined. The cabinets had black bits all over them and everything in my junk drawer was destroyed - all the napkins and menus and plastic ware and plastic wrap and tin foil. My rice cooker was full of fetid looking water that nearly caused me to lose my lunch. I threw it and several other pans I could never picture myself cooking with again in the trash. The building cleaned it up but claim there isn't anything they can do to prevent this again. Terrible. They cleaned my rugs but only one came clean. They are sending a cleaning service in to give everything a more detailed scrub. But honestly, being back and starting treatment put me on edge and I do not feel I have the proper coping skills to deal with the mess. Hopefully it will all be taken care of by tomorrow as promised.

What I'm saying is I need one more bit of rallying. I need to meet friends for dinner, have plans for the weekend, get emails and phone calls and texts that let me know I am not entering into this last phase on my own. Because right now, it is feeling kind of lonely and I am wishing there was a way I could run home to my family for a couple of days.

4 comments:

Mary said...

Ugh, I can't believe that guy! I once had a guy ask me out while I was giving blood and I politely declined -- good thing because later I saw him at the grocery store with someone who looked awfully wife-ish.

Sorry for this that you have to go through. I know it will one day soon be in the rear-view. Can't wait to hear about the trip!

Misty Fowler said...

I've been reading your blog for a couple of years - the Divorce Story helped me through a tough time and helped me have the courage to leave someone that I loved, but who was toxic for me. I've posted a couple of times, and I find myself once again identifying with you, and looking to you for strength.

I've been diagnosed with a Chiari Malformation, which I like to describe as being to smart makes my brain not fit in my skull. What it really means is that the lower part of my brain is down lower than it should be and going into my spine. Anyway, I have found comfort in diagnosis of the symptoms I've had for so long. And I hope that I will have the same courage you've had with your illness.

Thank you for sharing with us, and I hope that your weeks of radiation will go as smoothly as they can. You're an amazing woman!

Artax said...

I am far away, wishing you the very best. I hope this next stage passes quickly for you.

Hannah said...

The bad news is radiotherapy to the breast is a bit more susceptible to a skin reaction than radiation to pancreas. Follow the skin care advice for best results. Its very normal for your skin to go a bit pink by the last treatment. You shouldn't notice any changes for a little while though. The not being able to watch is a shame, but unfortunately the position has to be very precise and you need to be very still, and it won't be the same if you are watching. Where I work as a radiation therapist we once had a patient set up a camera and film what we did, you could always ask if you can do that if you want to see what happens?

Hopefully that lady has nearly finished treatment so her son won't keep being there!

Good luck with the rest of the treatment.

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