Ding Dong the Witch is Back!
I have officially started my proton radiation treatments under the care of Dr. Nancy Lee of Memorial Sloan Kettering Cancer Center in Manhattan. The treatments are being done at the New York Proton Center, a brand new 300 million dollar state-of-the-art facility which houses the most advanced radiation oncology machines available anywhere. I consider myself very lucky to have been referred to Dr. Lee and the proton center for a slow growing benign growth I have in my neck that may have been there for 20 or more years. The reason for these treatments is to stop the growth of the tumor so surgery will not be necessary. Dr. Lee feels this treatment will work for me and save me from the risks surgery presents.
I decided that even though the whole experience should be pretty uneventful, I would journal my visits and experience in a blog which I may or may not publish. I thought it may be useful to others considering proton therapy or who may not even know about it. We can about it learn together. I do know that there are not many places where this therapy is offered. I am very fortunate that this facility opened up at the right time and practically in my backyard. Many will have to travel here and even spend a month in a hotel to benefit from this treatment which is usually 30 weekdays.
So far I have learned that proton radiation therapy is administered in pencil thin beams to the area targeted and the radiation stops before exiting the target, sparing healthy cells any of the radiation. This is unlike the radiation we have been used to hearing about. It is safer and has less side effects. Also, unlike the other radiation, it can be used again on the same area, if need be, in the future. So I am very optimistic that it will help me.
Everyone I have met at the New York Proton Center, and I have met quite a few people already, has been extremely nice, caring and professional. They all make me feel like a V.I.P. Now I will start my "journal" of visits and we will see where that takes us.
December 26th, 2019 - My first treatment was started today. I got there early, and the team administering my radiation was running behind schedule. The technician came down to tell me they were running behind and apologized, she didn't want me to think they forgot about me. They were having some problems getting the patient before me set up and with his therapy you have to be set up perfectly before it can be administered. Of course, I told her I understood, as I would want them to take the same level of care with me. She came back about 20 minutes later to bring me upstairs. Two other technicians greeted me there, explained what they were going to do, and asked me what music I would like to hear. Of course I said Carrie Underwood! Before I could say, "Jesus Take The Wheel," Carrie was being streamed in the room in all her glory. The whole session took about 30 minutes. The first few minutes were all about getting me properly set up and then the treatment. I was told it went perfectly, and that I didn't move at all. I told them I was a very good patient and very good at staying still. They gave me my schedule and said see you tomorrow. Off I went.
December 27th - I had an afternoon appointment today. Things went a lot faster, no delays. I think I was in actual treatment for three Carrie Underwood songs, not long at all. And the last lyrics I heard were "I believe, in the end, love wins."
December 30th - Third treatment with a short CT scan. I might as well do some complaining. The treatments and imagining rooms are on the second floor. Picture it, two long very white corridors on each side of the building with an opening in the middle so you can pass from one to the other, and a series of never ending white doors on both sides of the corridors. So, when I go upstairs to wait, the waiting area is right off the elevator (happy days), but every other room I need to go is along one of these two long corridors. I can't finding my way to the changing room, to the other waiting area, OR back to the elevators when I am done. I just wander around until another human being sees me and asks if I need help getting out. I do not know what I am going to do the next 24 visits. I just have to hope I get lucky and someone finds me meandering around and steers me in the right direction.
December 31st - Fourth treatment and follow up with doctor. My appointment was 10:30 am and Google maps said the trip was 27 minutes. Left the house at 9:15 am as I always like to be early. At 9:30 am stuck in expressway standstill, inching along for at least 45 minutes. Call the treatment center to tell them I may be late. All of a sudden the cars start moving and I made it there by 10:23 am. Okay, that's fine. I get my treatment and am taken to a room to meet with the doctor, but first a nice British nurse shows up. I can't help but notice her accent and her name is Meghan. She moved here a year ago. She wants to ask me a bunch of questions and take my vitals. She has instructional material prepared for me to take home and read. She asks me if I have felt fatigue since my treatment started. I tell her well, considering treatment started the day after Christmas, after doing three days of cooking and traveling to the city is not part of my normal routine . . . I would have to say yes, I an fatigued. I have one question for her. I saw a couple of other patients and their skin was very red, like they had been sitting in the sun for 8 hours, will that happen to me? She says it might, it's hard to say, everyone is different. Then she adds of all the educational material she printed, that is the one thing she forgot to get a copy of for me. After we are done with our visit she leaves to get the doctor and make a copy of the skin care guidelines for me. The doctor comes in a few minutes later. She asks how I am feeling. She tells me I am getting a low dosage radiation. I shouldn't have any real side effects, but I have to be told of the potentiality of what could happen. My skin could turn red or tan, but there is no way of knowing now what will happen. Before we wrap things up I tell her that I wanted someone to know that from the moment I first set foot at the center everyone I have met, over a dozen people, have all made me feel like a VIP. She was very happy to hear that and said she would pass my message on to the executives. All in all a very good session, and Happy, Healthy New Year everyone.
January 2nd - I decided to go in extra early today because my husband wanted to go to work afterwards for a few hours. For there one hour before my appointment and, as I hoped, they called me up early, which gave my husband some extra time to spend at work. Meanwhile, I noticed, for the past two visits no one cared what music was playing, nor did they ask me what I wanted to hear. Maybe be all the New Year hoopla throwing everyone off. We'll see if that continues. Just for the record, I do know there are worse things, I am just spoiled.
January 3rd - Sixth Treatment out of 27. I got there extra early hoping to get out early. No such luck today, they were running behind. Then the parking garage was full, my husband had to go a few blocks away to find another lot to leave the car. So I go to the snack area and grab some Gold Fish and munch on those to kill a little time. I decide to go upstairs at my appointment time anyway. Thank God the girl says things are picking up I should go get changed. That was a lucky break. Still got done later than usual, but I'll take what I can get. Traffic was good both ways so all in all not bad.
January 6th - Seventh Treatment. Well today we went early, 9:30 AM for a 10:30 appointment. We were hoping to get done early so my husband could go to work. Well, they told me they were running behind 45 minutes and actually I was not called until 12 PM, more like a 90 minute delay. Needless to say my husband gave up on going to work and we weren't out of there till 12:30 PM. I feel the VIP treatment slip-sliding away too.
January 7th - Eighth Treatment. I barely signed in and say down today when I was called for my treatment 45 minutes early. Much better. However, I had a follow up nurse/doctor appointment and ended up having to wait for that about 45 minutes, so it was a wash. I am having some fatigue the past few days, which I shared with the doctor. The biggest consequence of the extra fatigue is that I am sleeping much better at night. The doctor told me she wishes she could sleep good at night. I told her I didn't recommend this treatment as the way to do it, and we both had a laugh.
January 8th- I was called up as soon as I walked in, over an hour early. Only had to stay 30 minutes and I was done. I wish every day could be like today. Nine Treatments down and 18 to go. Things are moving right along!
January 9th - Tenth Treatment and only 17 more to go. Went early, got called early, head back home early! The changing room was out of hospital gowns today. Packed myself up and went the one next to it which was almost depleted. Mentioned it to the staff. Other than that it was pretty uneventful.
January 10th - Eleventh Treatment! So I had a little chat with one of my technicians that I have seen all week. Such a sweet girl, moved here from Arkansas. She had a little time and we exchanged some life stories. Such wonderful employees at this treatment center.
January 13th- Appointment Number 12 is over and I am almost half way to the finish line. Woke up with a stiff neck. I was worried it could be side effects from the treatments, but a couple of Tylenol later the stiffness was gone. Got to the Center early, as usual, and for some reason they said they were looking for me and couldn't find me. I was sitting in the waiting area as always. I try to get there early so that my husband can go to work right after. I guess they haven't worked all the bugs out of their procedures yet? Well, no matter, I got done early enough and off my husband went.
January 14th - Done with Treatment #13. Things could have gone a little better. After today's treatment I see the nurse and doctor. The nurse cam right away, took my vitals and asked all the necessary questions. She said she would send in the doctor. So I waited. And waited. Stilling waiting . . . and about an hour later I open the door. I see the nurse. She asks if I've seen the doctor. I say no. All of a sudden my doctor and her assistant practically collide in front of me and run into the examining room. They are very apologetic for the long wait. I tell them both not to worry about it. I just wanted to say two things, one that everyone at the Center has been very nice. The other was to ask if I could cancel my appoints with my surgeon in April for an MRI and follow up since he was "watching and waiting" to monitor the growth for the purposes of surgery and, with these treatments, growth is supposed to stop. She told me I could cancel for now and she would be monitoring my condition in the future. In just little more than a minute the visit was over and they apologized again.
January 15th - With treatment 14 done I am now over the "hump" and past the halfway mark! Thirteen more treatments to go. Got there early today, was taken early, got home early! Oh Happy Days!
January 16th - Got there early, as usual. Filled out feedback form while I waited telling them everyone has been very caring and professional. Did some more waiting. The techs had a little trouble getting me position exactly right before the treatment, but they managed to make all the right adjustments. The trip home was clear sailing until we hit a road block, fire engine closed off street we were on. My husband figured out how to get us out of that mess. It took a while to get home, but some happy be done with 15 treatments and only 12 more to go.
January 17th - 16 down and 11 to go! Feeling good, with some fatigue. Traffic was light today. Got in early, out early and back home. I really needed to get back early today because my younger daughter's bridal gown fitting appointment is in the early afternoon.
January 20th - 17th treatment and feeling extra tired today. I mentioned it to the technician and he told me the radiation kills off some normal cells and the bodies is working overtime to fix the damage. On a brighter note, the fatigue is curing my restless sleep which had been keeping me up at night. Today was MLK day so there was very little traffic and the sun was actually out. Everything moved quickly. Ten more treatments to go!
January 21st - 18 down and 9 to go. Three-fourths of the way done. No real side effects except for some fatigue which helps me sleep much better at night and causes me to take an occasional nap. The staff at the Center has been wonderful. Some of them have accents and I learned they came from Arkansas, Texas and even England. You know me, I ask them where they are from if I hear an accent. I wonder if I will miss going there when I am done? Today was a little hectic. One of the machines wasn't working so they fell a little behind. They had some kind of "tour" going on with some people in suits. Maybe they were part of the board, maybe executives from another hospital whose business they were hoping to get, maybe a collection of people from he hospitals already affiliated with the Center . . . who knows, it just added to the hustling around. Even with all that, I got done early!
January 22nd - 19 down and 8 to go! I had hoped to get into the treatment room early and get out early again today so my husband could have extra time at work. Unfortunately there were some minor delays, but they ate into his work time. I am feeling great and am very thankful for that. I wonder if I will miss these trips to the city when I'm done. The staff is so pleasant and friendly, makes me think I might.
January 23 - 20 down, 7 to go! The light at the end of the tunnel is on now. Things were running late today. It wasn't terrible , but my husband decided not to go to work because it wasn't worth the trip. Instead we went to visit my sweet baby granddaughter and boy did she make me laugh!
January 24th - 21 treatments complete, 6 left. My treatments end February 3rd, so I won't be there for Valentine's Day. I had been thinking about bringing something to acknowledge the medical staff that have been so kind to me. Today I brought little "Valentine's" gifts for the staff members who have been taking good care of me the passed few weeks. It was just a small token of appreciation, a set of measuring spoons, each having an inscription related to love. Spread the love! The wonderful people that I was able to find today appreciated the thought. I'll try to find the rest of them next week. It's not so easy when they rotate shifts, but I am going to do my best.
January 27th - FIVE treatments left to go. Today one of the girls I met in the beginning of the process stopped by to say hi. I was telling her I only have five treatments left and she said did they tell you you get to ring the big bell on your last day? I said no, no one mentioned it and I never heard anyone ring the bell since I started. She said well you will ring it, bring your family, it's a big day! Then she said I'll make a note and stop by and see you when you do and then she gave me a big hug. The staff is mostly young and sweet and it really restores my faith and hope in human compassion and kindness. Day after day we hear so many bad, evil, sad and tragic things and it's so very disheartening. But when I walk through the doors of this center, everyone greets me with a warm smile, concern for my well being, asks how I am doing and tells me to have a great day when I leave. One woman today thanked me again for the small token I had given her Friday and told me it made her feel like baking. You know, when you get to be my age and everyone you know is busy, it's so nice to get such acknowledgement and attention from so many thoughtful people who go above and beyond in doing their jobs by treating all their patients with dignity and respect, kindness and concern.
January 28th - I went up for my treatment and they had jazz playing (not my favorite) so they asked what I wanted to hear and I told them Beyonce. I don't think they get too many requests for her. Today is the last appointment with my doctor, both she and her assistant were not there today. I'm glad everything is going well or I might be a bit upset at having to see a different doctor from another hospital. My check up went well. I think I gained more weight, which is not a good thing, but they are happy with it. The nurse told me I was one of her favorite patients. Then I asked about a follow-up appointment after my treatments are done next Monday. The follow-up will be arranged by my doctor's office. Maybe I can squeeze it into my busy schedule? We'll see. I don't see this as an urgent matter at this point. The wedding has to come first.
January 29th - Got done in record time today! I was very tired yesterday and took a 90 minute nap sitting up on the couch. The fatigue is getting a bit worse, but they say it will get worse even after the treatments and then taper off. Yesterday the doctor told me that exercise sometimes helps with fatigue. I only have three treatment left, maybe after that I will try to get some walking in a little every day.
January 30th - Walked in and got called within 5 minutes of my arrival. My husband was still stuck in traffic in front of the building. I was done in no time and back downstairs to find my husband. Hw had just parked in the garage and barely waited 5 minutes for me. Fastest treatment yet! Two more treatments to go and then back to wedding planning.
January 31st - Another quick day! I told some of the techs who have been with me throughout the treatment process that Monday was my last day. The three of them gave me a hug. As good as it will be to be totally done with all this, I will miss seeing these young people every day.
February 3rd - My last treatment! Got there early and they took me immediately! I asked if I could see a doctor after my treatment. Over the weekend I noticed some itching going on in the back of my neck and realized maybe it was due to the treatments. I hadn't been moisturizing there because I had no idea they were attacking this growth from behind. As they took me upstairs they told me to be sure they notify the front desk when I am done so they can bring my husband up to see me ring the bell. I told them he is the one who deserves to ring the bell after driving me back and forth every day for my appointments. They say fine, you can both ring the bell. They asked me what music I would like to hear today. I say Shania Twain "Man I Feel Like a Woman!" My theme song. After the treatment they said the staff would meet me by the bell so they can watch me ring it. About 6 of them showed up for me, and there was one of my favorites who came early to hug me and wish me well, but then had to go tend to another patient. I tell you I am going to really miss these wonderful young people so much. After the bell ringing. . . and I rang it loud enough for all my facebook friends to hear it (I almost went deaf) . . . there were a few more hugs and down I wen with the nurse to check out my neck. She saw if was pretty red and took a picture for the doctor to see. Apparently I just need to apply a lot of moisturizer every day, no prescription creams needed. I got my follow-up appointment for the end of May. And now I can get back to wedding planning.
