DONE DONE DONE

The last radiation is behind me now. It was a boost so 3 machine angles, 4 magnifications, four doses, and when we were done, they kept my ID card. No reason for this blue card anymore.

As I got off of the table, Jason, my favorite therapist who had been reassigned during my treatments, arrived. As I was putting on my second robe, he gave me a large hug. Then Nicole and Carol joined in. We all gave a hoot and then Jason threw confetti over my head and told me to never return!

I should be elated, ecstatic, so why did I start crying in the dressing room? I am angry that I had to do this. I am overwhelmed that three therapists, who treat hundreds of people in any given year, opened their hearts and let me in. That so many nurses seem to genuinely care about me and how I am.

Emotions are a nutty thing, eh? I am indeed thrilled to be done with treatment, in awe of the caretakers who got me here, angry that for some random reason I have [or had] breast cancer, pissed that seven months was taken from me and that I will always have doubts about the future. I think that I am simply worn out. I have given this fight every ounce of energy I could muster. As Dr. Roger said, "Now I need to get my life back, and go about the business of living it."

The trick will be to find the map. But while I search for the map, I don't have to make a daily trip to the hospital, 'cause I am DONE, DONE, DONE!!!!!!

CA 29.27

My final piece of bloodwork is in, and my CA 29.27, a breast cancer blood marker, is down to 37. Now I can actually believe that the cancer is gone, and the anxieties in the back of my head can dissipate!

Only two more radiations.

Dr. Roger Speaks

Today was my first post-chemo follow up appointment with Dr. Roger, my medical oncologist. For no particular reason, I was anxious. Took some time to fall asleep last night, I was edgy this morning, yet, I did not actually expect any bad news.

I remember the first time I hit the '9' in the Shapiro Building elevator. It was part of a journey towards a core realization that I had breast cancer and life was never going to be the same. Today, hitting the '9' feels no different than ordering a turkey sandwich. It is part of my life, and the sense of dread has been replaced with familiarity. We sat by the fish tank, and watched the three brilliantly colored fish swim in figure eights, back and forth, back and forth. Check in was the same as it had been for my chemo infusions; weight, blood pressure, temperature. [Yup, officially have lost 15 pounds!] No bloodwork, I was told. Dr. Roger orders blood after his meetings with patients.

Of course, I needed to change into a lovely hospital gown and Dr. Roger appeared. He did a very gentle exam, avoiding my treated breast since it is so red and fiery. He spent a fair amount of time massaging nodes, and then I had my first official breast exam of the other breast. When we moved to the desk, Leslie was not called even though he had specifically accompanied me to hear what is on the agenda.

Dr. Roger suggests Aloe Vera as soon as the burning subsides. He asked about any joint or muscle pain, was clearly pleased that I have been randomized into the Aromosin group since his patients have far fewer muscular/skeleton problems with this AI. And then I asked him how we would know how I was doing; how are we looking for recurrence [first time I had said that out loud!] He will rely on checkups every 6 months, history, symptoms and blood work. He will not order expensive scans unless there is something that triggers concern. I then asked him "Who do I call if I don't feel well? Do I call you, or my primary?"

Dr. Roger explained that in reality, even if I call my primary, their waiting times are longer, and many patients end up heading back to the ninth floor because the team there is so accessible, and they get test results back really quickly. But, a sore throat is a primary doctor issue, while anything that relates to joint or muscle pain is an oncology issue. He cautioned against calling too quickly and then he cautioned about being too stoic. It was sad to have to tell him that I haven't had the energy or will to play my violin. He worked so hard to make sure that I would have this option at the end of treatment. We talked about getting some of my arm mobility back again; when to start my exercises again, post-radiation.

And then, Dr. Roger leaned back and told me that at least for a time, the fear of recurrence would be real, but that we have done everything possible to get this beast the first time. "We have treated you with the latest methods, and we hope that this is enough. Now you need to live your life again," he concluded.

I am now cancer-free!

Four More Days!

Today I am back in town, and will head to the hospital soon. Only four more radiation treatments!

Broken Machines

Today the phone rang at 7:30 am. Phones ringing that early in the morning generally signal bad news, but today it was simply my radiation therapist calling to tell me that my radiation machine is on the fritz. "Could you come in this afternoon," Jason inquired? "My life is all yours," I replied. "Dr. Mary Ann wants to make sure you have your treatment today, so I will call you back with a time." He then indicated that it would probably be after two.

I have to admit that I had mixed feelings. Part of me wanted a respite for my skin; more of me wants to finish the treatments in 2005. And in fact, it turns out that everyone in this department knows about my year-end obsession. Originally Dr. Mary Ann was insulted that I wanted to finish in 2005. She simply misunderstood when I said that I didn't want 2006 polluted with treatments.

When Jason called back, he told me to come in a 3:30. He was redoing all of my mapping to move the treatment from one machine to another, a long and tedious job. Of course I arrived on Susan-time, 3:15 pm and then waited. Finally at 4:45 the treatment plan had been redone for the other machine, and I was escorted to a different room. The radiation therapist supervisor was on hand to ensure that my new coordinates made sense. [Actually, she has been treating me a lot lately. Wonder if I should think about that.] It took them three tries to line me up correctly.

This machine sounds different. Instead of a constant sound, the machine creates its own Doppler effect. The pitch swoops from below and then reaches its pitch, holding a high tone until the end of the dose. Each time the swoop varied, but it always made it back to its same sing song tone.

When I left the hospital at 5:15, my machine was still dismantled and the repair technician was staring at a computer screen looking irritated. Nicole told me that tomorrow, patients would be cancelled again, but not me. My treatment plan has already been remapped so I am on the schedule at a new time. Only three patients from the broken room received treatment today; the rest are in a delay pattern.

My folks all know about my 2005 pledge, and they all worked extra to make this happen. How amazing is this? In full gratitude mode, I made a walnut bread to bring to them in the morning. Now if they could stop burning me, I might make them a full cake with candles.

Well Toasted

Today was my second boost. The boosts are different than I had anticipated. Turns out that they are using a new technique on me. Instead of one 200 unit boost directed at the scar, they are doing four individual shots from three different angles with four different amplifications. So instead of being a shorter session, it is a tad longer.

Monday I started to have some discomfort. Today I am downright toasted. I now have several layers of aquafor, bandages and strapping on my body. My medical team doesn't want my skin to be lotionless except during treatments. "I am a bit concerned," stated Dr. Mary Ann. Nurse Nancy went 'shopping' in the supply room and found everything that I need.

I am now taking some over the counter pain medication and they have switched me to a moisturizing soap. The fun simply never ends!

Short asides:

The colonoscopy biopsy was negative. Good news, but it does mean we have no idea what happened, how to prevent it, or how to treat it if this happens again.

My genetic testing was approved by my insurance company, and a vial of my blood is on its way to Utah.

Boosts!

Today I have my first radiation boost. This is not the same as an energy boost. The energy boosts are the fact that on Saturday I get to see my sister Margaret who is flying in from LA, Wednesday we pick Lauren up from college, and that on Sunday our whole family will be together!

It has been a long time since this has happened. Two years maybe? I can't keep track, but this year it seems most important.

A Very Long Week

This week I had eight medical appointments. This is like a full-time job!

Of course, each day I have my radiation. I am getting nicely toasted and have one area of peeling. But at the doctor review on Wednesday, Dr. Mary Ann claims that I am doing better than many at this stage of the game. Monday is my last regular treatment, and then we move onto the boosts. The boosts require new mapping coordinates and on Thursday my radiation therapists took a new set of x-rays for the physicists. But, before they got started I was asked if I would be willing to take part in a study. In the quest to reduce the radiation effects on major internal organs, the radiation machines are angled for breast cancer patients which can lead to an inaccurate dosage. Okay, this isn't really what I, a patient undergoing radiation, actually wants to hear. It was explained to me that one of the physicists would like to do some measurements because he believes that he has developed a new method for calculating dosages and coordinates. Since this study didn't involve any more needles, I agreed. Dr. Li arrived, bowing and blushed as he put sticky markers on my uncovered breasts. Dr. Li spoke about 12 words of English so we didn't chat very much. Turns out the measurements would be done in his office. The markers would appear on my x-rays, and then he would do his calculations. Again, why not? Anything that I can do to make future treatments more effective seems like a good idea. I sure don't wish any of this on anybody else!

On Wednesday afternoon, I returned to the hospital to meet with the genetics counselor. This hour long meeting involved creating a family tree, talking about how genes work, and answering amy questions. Of course I had done a lot of research to prepare for this meeting, so I didn't actually have that many questions. The counselor is recommending that the genetic testing be done based on the fact that in three generations only two women in my family have not had a hysterectomy before menopause, and that those two women were diagnosed with breast cancer. The one unexpected piece of information was that she pointed at a first cousin on the chart who is younger than 40, the standard breast cancer screening age, and told me that I must tell her to start getting screened immediately. Her risk for breast cancer is equal to my daughter's.

If the BRCA test is negative, the genetics couselor wants me to [is my chart marked with a large star or something?] participate in a study which is searching for other genetic markers. She strongly believes that with so many fibroids on my family tree which resulted in ovarian removal, the best way to reduce the chance of getting breast cancer, that they could learn a lot from my blood work. Again, in principal, I have agreed to participate.

Thursday was a follow-up ultrasound. Upon my arrival it became clear that someone had changed the work order since we began with a kidney scan. All clear! I have to admit that I am a tad relieved and grateful that this scan was added. A small part of me had feared that my recent GI issues might be related to chemo damage. They then did the original work order and indeed the ovarian cysts, noted three months ago, are gone! Whooohooo!

I am in full radiation fatigue mode now. I crawl into bed early and nap each afternoon. We are still waiting for the septum biopsy results and until they return, I continue to eat very lightly. The doctor that referred me to the GI specialist called on Friday to check up on me. What a sweetheart! I am not even his patient and he is calling.

Oh yes, I started the aromatese inhibitor on Wednesday. I was randomized into the drug that I prefer. Why do I prefer this one? Oh, the side effects will be better for my lifestyle. I can't believe I am happy getting one set of debilitating side effects over another. [Man has my life changed.]

There is no question that I am close to reaching the end of my emotional rope. I have been fighting this disease for almost seven months now and I am just plain tired of it. I have been cut, burned, poked, prodded, infused, and I can't eat normally. December 30th, my last radiation treatment, can't come soon enough!

One More Step

Well today was the day for this unpleasant procedure. Let's say that a colonoscopy isn't something to give someone as a birthday present. Prepping for the procedure isn't pleasant either. I am not going to share any details, but I am hoping that I don't need to do this again for a very long time.

However, the doctor did find some irritation which could be inflammation. Also found some scarring which complicates what my digestive system has to deal with. Who knew that a c-section 19 years ago would matter today? They did a biopsy, and I should have the results in a week or so. If the biopsy shows inflammation, there is medication. If it is just irritated, we are looking at the wait and see approach.

For now, I will continue to eat easy to digest food and wait for the doctor's report.

Adding to the Team

My medical team has gotten larger. Dr. Ram is a GI specialist and was gracious enough to add me to his already busy schedule quickly.

We arrived at his offices early, and 20 minutes before my appointment a young man came down the hallway and called a patient name. "I am Dr. XXXXX and I am working with Dr. Ram today. Please come this way." About 3 minutes later another young man came down the hallway and called a patient name. "I am Dr. YYYYY and I am a medical student working with Dr. Ram today. Please come this way." Five minutes past before another young man came down the hallway, called a patient name, and sure enough.... "I am Dr. ZZZZ and I am working with Dr. Ram today. Please come this way." At 8:20 a young man came down the hallway and called me. "My name is Dr. Shash and I am working with Dr. Ram. Let's go this way."

Dr. Ram had at least FOUR residents/students working with him. That defines busy!

With a slight hesitation, I followed this young resident down the hallway into an examination room. Dr. Shash was not like the last two residents I have tolerated. He was soft spoken, asked lots of questions and then [gasp!] actually listened to the answers. But he sold me when he looked at me earnestly and asked "I don't know much about radiation. Can you tell me about this?" Aha! A resident who knew what he doesn't know! Eureka! At the end of the questions and physical examination, he outlined all the horrid things that could be wrong with me, and all of the invasive procedures that they could order. But then he smiled and said "But, I really don't think we are looking at any of that." He then sent me back to the waiting room to wait for Dr. Ram. It didn't take long, and this time Leslie came down with me.

Since this is a teaching hospital, teaching does happen. In this case, Dr. Ram had Dr. Shash present my case to him while I was there. I was encouraged to interrupt if I thought any of the information was not accurate. Dr. Ram then poked around my stomach. "This is the lower quadrant," he told Dr. Shash. Dr. Shash made lots of notes on his pad.

Dr. Ram went through a long list of things that are not wrong. Liver function is good, white blood counts are healthy, no obstructions, no obvious infections. He looked me in the eyes and said "Clearly you have been through a lot in the last few months. I don't want to do anything invasive that isn't necessary especially since I am not really sure there is anything truly wrong. I suspect that the lining of your intestines has been damaged by your chemo." "But," he continued "I should do a colonoscopy to rule out some other possible causes."

Oh yea! So that is where I will be on Tuesday morning following three days of preparation which includes drinking some nasty mixtures.

Dr. Ram hopes that these episodes were just random, and that they will never return. However, he wants to understand why part of my belly is still distended, and if possible, find the cause of these horrid and painful evenings. If the colonoscopy results are negative, he would take the 'wait and see' approach.

I really liked Dr. Ram. I was prepared for a distracted doctor who was rushed. Instead he was engaged, warm, and totally in the room. He was practical and didn't stretch to find the unusual. He was patient and kind to his resident, while still being firm. Another quality doctor is now on the Tucker-Team.

Vignette

Agnes is quirky. Agnes is not reliable. Agnes is my VW new beetle. Why I own her is a long story, but indeed she is mine. Since purchasing Agnes almost two years ago, Agnes has been on many tow trucks and she and Bill, her mechanic, have a very special and expensive relationship.

On Monday as I drove home from radiation the battery light came on, joining the omni-present check engine light. Since I was only 1.5 miles from home, I pushed on. As I turned onto McGrath Highway, the ABS light came on and only moments later, the airbag lights started to blink. Next the radio faded. As I pulled in front of the Lechmere train station, the brake light began flashing and then the oil light came on. At this point, I pulled into a private parking lot at the Glassfactory Condos and pulled into a reserved spot.

I checked the oil levels and to my horror, the dipstick appeared to be dry. Now Agnes loves to drink oil, so there was a half bottle of oil in the car which I added. Not enough oil however to make a dent to her thirst. So I headed out to walk to find oil on this stretch of highway. A half mile later, there was a Shell station, I purchased oil and walked back. After adding oil, the car was still not interested in starting up. When I tried to turn over the engine, I heard a loud purring/clicking sound and all of the lights once again blinked in fast succession.

Mondays, Leslie is in New Hampshire so I called him on the cell phone. I was distraut. "Car broken, AAA, sniffle." But there really was no way for him to help me, but we decided that the car should go visit Uncle Bill. As I hung up the phone a large white Volvo station wagon pulled up and the blonde woman started to yell at me. "This is my parking space. You need to move."

"My car won't start. Triple A will be here soon to tow it," I responded.

"Well, can't you push it out of the way?" she enquired.

And much to my embarrassment, I had a total meltdown in front of this woman. She gave me her phone number so that I could call when the car was out of her spot.

And so I called Triple A who assured me that a tow truck would be there within an hour, and 59 minutes later the most ancient tow truck in the city arrived. Mr. Tow Truck pushed my car out of the space so that he could hook me up, but this really wasn't the right type of truck for my car. After hooking me up, he agreed and released my car. The oil pan was sitting on his bar and one bump would have damaged the car. [Boston has lots of bumps.]

And so I was back on the phone with Triple A. And here it gets weird. Triple A claimed that there was only one flat bed truck in the area and it was on a long run to Providence. Well, I know for a fact that there are at least 15 flat bed tow trucks in Somerville alone. Over the rest of the afternoon, I had to make 6 more calls to Triple A. By the time a flat bed truck came to get me 6 hours later, Uncle Bill was no longer open so the car had to be towed to my house. And then we repeated this dance in the morning to get the car to the mechanic.

Monday night when Leslie arrived home, of course, we chatted about this nightmare of a day.

"You know Susan, when you called this morning and were so upset.... well, I was so relieved that it was just the car," he said. "It is just a car."

Tuesday Musings

According to those closest to me, I no longer look like death warmed over! Starting Friday I have worked hard to remain hydrated and somewhat nourished. My diet is mostly clear still with chicken broths, ginger ale and weak teas. But yesterday I was supposed to add some poultry, and I did. My good friend Sandi came over after work and we headed to Panera Bread. I got the soup/sandwich combo. A chicken soup with a smoked turkey on foccaccia. Skipped all the veggies on the sandwich and opted for mustard only. Okay, it isn't digesting really, but I did not end up writhing in pain last night either. In fact, I was starving!

Thanks for Susan-Sitting again Sandi!!!

Radiation continues with daily regularity. The therapist team is having to make some minor adjustments due to my weight loss. They will check today's X-rays to confirm that they are zapping all the right places. Wednesday is Radiation Oncologist day, so Dr. Mary Ann will double check all the angles and check my skin [which is much happier lately.] Thursday morning is the GI specialist appointment. What a fun life I have!

Today was supposed to be our first major snow storm, but it has been cancelled due to lack of interest. However, the warnings were cancelled after my afternoon client delayed our meeting so I get to spend the afternoon at home in my office working. A snow day without the snow. What a deal.

And so life just continues, a stream of medical appointments, work, and family. This is the new normal for now.

Bad Week

Sunday and Monday nights, no bloating, no swelling, slept well. Tuesday though, a new and different story. The pain began around 4:30 in the afternoon, and it didn't stop. Wednesday, the radiation crew was very concerned, and after some blood tests, they sent me straight to the emergency room.

That was a long day. They finally released me at 8:30 in the evening, having ruled out anything that might blow up inside of me. By Friday, I had not had anything to drink or eat for the entire week, and my primary doctor made is really clear that I must start to drink something. He gave me some drugs, and sternly told me that just like during chemo, I must drink every two hours. And so last night I started. I am still totally exhausted, I have a fair amount of discomfort, but I have staved off the dehydration. I also have a referral to a GI specialist. There is a lot more, but it is all so boring and tedious. Bottom line: no one knows what is causing this, how to prevent it, or how to make the pain go away.

I had to get a sub for my weekend gig [which I hate], delay database installs [which I hate], and I think I simply slept for three days in a row.

I want my body back! I have played by the rules here, and I want something back in return. I am tired of seeing my husband so upset and concerned. [And was he a gem this week, staying with me during the numerous appointments and tests!] I want to get back to something stable. I get that I won't have the 60 hours a week of energy that I once did, but can't I rely on 20? 15? My clients are getting irritated now and I don't know how to tell them the Cancer Rollercoaster isn't playing by my rules, but rules that I am not allowed to see.

Okay, I am not going to rant anymore, and am trying to regain my optimism and good outlook but with each wrench of my stomach my determination wanes.