Chapter 10 - The Plan

There is so much to learn about, to keep track of, when you are facing cancer.  It’s hard to keep it all straight in your head, when you are also constantly having to manage your fear. Your mind is full of questions, and you don’t always feel like the people around you can answer them, or even want you to ask them out loud. As scared as you are, you know they are scared, too. To manage all this fear, and keep track of the information about the diagnosis and treatment, MG and I started keeping a list of questions for the doctors, and bringing pen and paper to each appointment, to keep a record of the answers to these questions. The blog became a tool, not just for communicating with my support network, but for keeping a record of treatment information. A record for us, primarily, but also for anyone we knew who might find themselves facing a similar situation.  One of the reasons cancer was so scary was that it was such a mystery, so I wanted to demystify it for me, my friends and family, for anyone, really.

As I wrote previously, the decision to have a bilateral mastectomy was the easy part. It took longer to decide what to do about reconstruction, but I eventually decided to go with free abdominal TRAM flap reconstruction.  My breast surgeon referred me to a plastic surgeon she worked with all the time, who was known as the best in the area for breast reconstruction.  The challenge was getting in to see him because he was in such high demand. With each step in developing a treatment plan depending on the one before, it was hard to pin down a schedule.  And of course, none of this was happening fast enough for me.  I wanted to get the surgery as soon as possible, so I could feel safe from any undetected cancer that might be in my breasts. I also just wanted to get it over with, since I was so afraid of all of the unknowns that were involved with a major surgery like this.  

Blog: Tuesday, December 4, 2007 

Dr. G took out my stitches, and I feel much better with them gone. I can raise my hand all the way over my head again. You don't know how much you want to do that until you can't!

Here are the details of the mastectomy/reconstruction in brief:

Bilateral or double mastectomy/reconstruction takes 8-10 hours. Afterwards, I will spend 2 days in the ICU, where they can monitor me closely every 15 minutes. This is necessary because we are talking about vascular surgery, infection risks, tissue death risk, and bleeding risk. They also need to make sure the reconstructed blood vessels are allowing for proper blood flow to the reconstruction. There is always the chance that Dr. D will need to go in and correct anything that goes wrong, and the ICU is the best place to detect that need if it arises. Then I spend about 3 days in a regular room before I go home. Once I go home, I should be able to get around the house as long as I don't use the stairs too often, and MG should be able to leave me at home alone.

Dr. G has been doing mastectomies for 10 years and Dr. D has been doing reconstruction for 11 years, and neither of them has ever lost a patient during surgery or post-surgery. There have been complications with the reconstructed areas, sometimes requiring additional surgeries or treatment, but no deaths. … Dr. G went over the details of who will be in the OR, how they will proceed around my body and through the procedures. She answered what questions she could about anesthesia and reconstruction. … We talked about pain management in and out of the hospital; we talked about follow-up, possible complications, long- and short-term effects of the surgeries.

The abdominal surgery to harvest the fat and tissue for reconstruction will ultimately cause me more pain and healing time than the bilateral mastectomy would, and she said that although it will take a while before I am comfortable with the reconstruction, she is confident that I will eventually be pleased, especially after the scars fade… 

Lymph Nodes: Dr. G said that the chances of a one centimeter tumor resulting in cancer in the sentinel nodes[1] are very slim. She usually takes 2 or 3 nodes, at least, more if they appear diseased, but she tries to take as few as possible and rarely more than 10, to reduce the risk of lymphedema[2].

If surgery is in the early morning, I will go in the night before for a pre-surgical nuclear test, where they inject me with radioactive dye to be able to see any cancer cells in the lymph nodes the next morning. Then I go home and come back in the morning and check in for surgery. They inject the tumor site with blue dye in the OR to identify which are the sentinel nodes for the tumor. A shadow of that dye may always be visible on my skin.

Chemo: Dr. G seems to think there is about a 50% chance of my ending up getting chemotherapy because of my age and my previous cancer history, but we will know more after she tests the lymph nodes. I will also know more after I meet with Dr. R. this Thursday and after our consultation at Sloan Kettering[3] …

I will meet with the anesthesiologist closer to the surgery date, for pre-surgical blood work and to discuss medication risks and other related issues. They will also examine my neck at that time, I think, to see if I should be easy to intubate (put a tube in my throat). Intubation is necessary because general anesthesia depresses your respiratory function and slows your heart rate, so they put you on a respirator to make sure this doesn't cause problems during surgery…

… I can have visitors in the ICU, but I probably won't be available for visitors until the day after surgery... If any of you are available to keep MG company while I'm in surgery, or hang out in the waiting room so she can go home and get some sleep after I'm settled in ICU, please let us know. 

I am getting a flu shot tomorrow, in preparation for being in the hospital. If any of you are planning to visit and have not already had a flu shot, I hope you will consider it, so that you don't get sick while visiting me. Also, MG cannot get a flu shot, so I don't want anyone bringing the flu in to meet her, either. 

Wednesday, December 5, 2007

“As I suspect you know - and if you do not, you'll soon find out - there are many of us who care about the two of you. Thanks for letting us know that you are doing what needs to be done and working with excellent caring physicians. And thanks, too, for letting us know how and when we can be helpful. You are strong and are getting through this, but wish you could be applying your focused determination to other, more pleasant tasks. That, too, will come. Be well.”

Blog: Wednesday, December 5, 2007 

I think I was so relieved last night after seeing Dr. G that I had to come down a little back to being scared. Plus, even though my wound feels better with the stitches gone, I'm pretty sore from using my arm more yesterday or something.

I feel like now I'm getting ready for being nervous on Tuesday already for our meeting with Dr. D. His office sent paperwork today, which makes this whole thing feel even more real. Plus, I told new people today about the diagnosis, and every time I tell someone, it also makes the cancer feel more real.

I don't think I'm depressed, maybe I'm just PMSing... I have work to do, but I just can't focus.

Tomorrow, I go with Mom at 9:15 to get a skin cancer removed from her nose, but I also have to get a flu shot at 11:15, and have my appt with Dr. R at 1:15, and then my haircut at 3. Luckily, MG will be with me for the last 2 appointments so I can relax in the car. But maybe it is better to save my energy today, as tomorrow will be a long day. 

Blog: Thursday, December 6, 2007 

So, we went to the oncologist today, Dr. R, and let me just say up front that she is completely certain that chemo is the appropriate course of treatment, even if there is no cancer in my lymph nodes. Because, even though the cancer is not as aggressive as it could be, I am very young, so they want to buy me as much remission time as possible.

She also doubts that we will find cancer in the lymph nodes because the tumor itself did not invade any blood or lymph vessels prior to excision. That makes MG and I both think that my odds may actually be pretty good that there is no lymph involvement. And the tumor tested positive for estrogen and progesterone and negative for Her2Nu, both tests indicate that we are dealing with cancer that is not very aggressive.

She also confirmed that a bilateral mastectomy and Tamoxifen are 99% effective in preventing recurrence... I'm pretty sure I want to tackle that 1% as aggressively as possible. We are still going to Sloan Kettering for confirmation of her recommendations based on the pathology. Once we get a doctor's name at Sloan, she can email with them to discuss her recommendations and me as a patient, and her office will send them the reports and slides and everything as she gets them, so they will be more prepared for our consultation.

She recommends the following chemotherapy treatment, knowing what we know now about the tumor. This might change based on the genetic features of the tumor and the lymph node biopsies:

About a month or so after surgery is when we would start, although we can delay that a week or so if I go to Sloan Kettering for a second opinion. Before we begin, Dr. G will install a port for chemo. I'm not sure where she will put it because you're supposed to put it on the side that doesn't have surgery, but I won't have one... and Dr. R couldn't answer that herself today, but she knows Dr. G will know what to do.

The current chemotherapy standard for Stage 1, no lymph node involvement in someone as young as me is what they call A/C - Adriamycin and Cytoxan, together, 4 cycles, dose dense, every two weeks. They used to do just 1 dose a month, but now they start you on every 2 weeks and adjust based on your tolerance for the drugs. So you go in her office, spend 45 minutes or so getting drugs to calm anxiety and prevent nausea (what they call anti-emetics - in some patients the nausea is actually caused by anxiety itself, which is why they treat for both) and possible side effects of the A/C, then you get the chemo drugs themselves. 

Nausea and vomiting usually start within 24 to 48 hours of treatment. They try to prevent it with the anti-emetic pre-treatment, but they also send you home with a variety of anti-emetic medications to take during those 2 days to keep nausea at bay. Vomiting is not always inevitable, but I meet several of the criteria for people most likely to suffer from it - I'm a woman under 50, I tend toward anxiety, and I've always had motion sickness and, in the last 3 years, vertigo.

I can have a family member or friend with me during treatment. I can bring a DVD player to watch a movie as long as I have headphones, or I can listen to music or sleep or whatever. And I have to have someone bring me to and from chemo, because the anti-emetic drugs will make me drowsy, especially the Ativan, which is for anxiety.

Hair loss happens in the first month. This is the point where I started crying. I knew that chemo was a possibility, we've been talking about it, and I knew hair loss was a possibility. But having her say it with such certainty was a shock.

I should tell you that at the hair salon, our next stop this afternoon, one of the stylists said that she has a client who is on chemo for breast cancer for her second recurrence, and they tell her every time that she will lose all her hair, but she doesn't. It just gets thinner. And she thinks that with my hair as thick as it is, maybe it will just get thinner. Thinner is fine, but if it falls out in patches, I am definitely shaving it off.

If you could see how many typing mistakes I am making, you would know how upset I really am about this. In some ways, I fear chemo more than the surgery. But I think that I ultimately fear them both because they haven't happened yet.

Last night MG and I went to Kohl's and bought some men's flannel pajama pants and fleece pants (in large and extra large), and a couple of fleece zip-up jackets (large). Because Dr. G. said that the abdominal portion of the surgery could be the most painful part, we thought it would be better to have some really soft and loose fitting clothing for the first few weeks. So if you see me around this winter in oversized fleece clothing, you will know that I am as comfortable as can be expected.

Thursday, December 6-7, 2007

“Hang in there, friend. I'm sorry that you have to go through such aggressive treatment, but I'm also very glad that you're doing absolutely everything possible. Thanks for the thorough update. I LOVE the new haircut. You're a natural for short hair--it really looks great on you! Be well, be strong, be hopeful....but also, of course, be willing to rely on your friends and family.”

 “Thanks for the updates...I know that the whole thing can be quite scary...I am scared for you as well, but all of the information that you have provided has definitely helped put my mind a little more at ease. Knowing you and what you have survived so far in your life, I know you can get through this. You are one of the strongest people I know. Love you, Your big little sister” 

Blog: Saturday, December 8, 2007 

I really am enjoying this break from dealing with doctors. I did have a small outbreak of hives yesterday, either from being on Tylenol so long, or from the flu shot I got on Thursday, but I think it's over, as I haven't seen any new hives this morning. …. Yesterday I took a break from Tylenol, which may be why the hives haven't increased, but I can't take Ibuprofen any more, as it is forbidden for 7-10 days before surgery. I'm hoping that we can have the surgery soon, so I don't want to ruin those chances by taking Ibuprofen, even though my system tolerates it better. I wish I was at a point in healing from the last surgery where I didn't need anything, but I'm not there yet.

Today we slept in a little, which was a treat. I had a bunch of weird dreams last night, some about cancer and some about just having no control over family or strangers or anything, so I woke up in kind of a funky mood, but I'm feeling a little better now. It's amazing what a good cry, a hot shower, and reading your guestbook entries can do for my spirits. 

Sunday, December 9, 2007

“I don't know why I feel such an obligation to keep stress nearby without taking a break from it. Like the worry will escape if I don't hold it tightly? So, I'm glad that you are nurturing yourselves and each other by dropping it when you can. I think it must be a huge factor in resilience, which you guys have!”

 “I just want to comment on how wonderful it is to see such an outpouring of support for Maria and MG. It feels like we're all part of a team. Since I work in a hospital, I wanted to share another tip about how to stay healthy (and keep Ria healthy) while visiting Maria and MG in the hospital: please wash your hands. Over and over. Ask each healthcare provider that approaches Maria, ‘Have you washed your hands?’ There should be a Purell dispenser on the wall of Maria's hospital room …”

Blog: Sunday, December 9, 2007 

We just spent a few hours with family, celebrating D and C's birthdays. I haven't laughed that much in weeks. It felt really good to just be silly and make jokes. 

Two more days until we meet Dr. D. I'm a little nervous already. What if I don't like him? I mean, he's the best there is for reconstruction in this part of the state, everyone in the local health care industry who we talk to says that he is the best, but what if I don't like him? Part of what works so well for me with Dr. G is not just that she is the best at what she does, but we genuinely like each other, which makes it really easy to trust her. I don't know of any reason why I shouldn't like him, I'm just nervous about it.

Maybe I am just nervous in general. But I don't want to waste any of my down time worrying about it, so I just thought I would journal about it and let it go.

MG and I are both hoping that this surgery will happen soon. The sooner it's over, the sooner we know how it went, and the sooner I can move through recovery and on to the next phase of treatment. But I guess this is one of those things that is totally out of my hands. One of many of those things, actually, over which I have no control. I guess I better keep praying for more faith.

In the meantime, I have been in a pretty good mood... thank you everyone, for all of your thoughtful gestures and gifts, and for your messages in the guest book. I am determined to remain positive and optimistic, and you are all instrumental in helping me to do that.

---

[1] Sentinel nodes are the lymph nodes closest to the tumor, the first level of filtering for the breast.

[2] Lymphedema is an abnormal buildup of fluid that causes swelling, most often in the arms or legs. The condition develops when lymph vessels or lymph nodes are missing, impaired, damaged, or removed. The lymph nodes are part of the lymphatic system which helps fight off infection and clears debris from the body.

[3] This consultation ended up being denied by my insurance, although I did get a second opinion from a local oncologist.

Chapter 9 – Circle of Friends

                                                

I wasn’t up to calling everyone about my diagnosis, so some people heard by email. This may not have been the best way to tell people but telling them one at a time was so grueling, I just couldn’t do that with everyone.  So instead, I tried to manage the flow of information through emails, and to word the emails so they weren’t too abrupt. For example:

I'm sorry if this email is abrupt or startling.  I just kept hoping it would all turn out to be nothing, but it isn't.

In July I had an unreadable mammogram, which led to an MRI and an ultrasound, and then a core needle biopsy on both breasts.  This biopsy showed precancerous tissue in my left breast, although my right side is still benign.  So this Monday I had a surgical biopsy to remove the precancerous tissue and determine if my DCIS was back.  

The DCIS is not back, but I do have an invasive breast cancer in my left breast, probably stage 1, but we won't know until the lymph nodes come out during the mastectomy.  Because I had this breast treated with radiation before, I can't have breast-conserving surgery again, so I have to get the whole thing removed.  MG and I are almost decided that I will get reconstruction, and that I will probably do the right side as well, just to avoid having to go through all of this again on that side later.  The risk is pretty high, now that I've had two separate kinds of breast cancer on the left.

We won't know about chemo until the lymph nodes are tested, but my surgeon thinks that because I am so young, it will probably be recommended.  We are still wondering if we should get a second opinion or not.  I haven't talked to my oncologist yet; we have to see what she says.  I've only known this since about 9am this morning.  Thank God MG was home when she called.

 

As you can imagine, emails like this led to more emails, and to phone calls and more phone calls.  It was exhausting. Perhaps you already know how difficult it is, telling people who love you that you have cancer, dealing with their reactions. Some people are very good at not letting you see how upset they are about your diagnosis; instead, they comfort you. But other people are not able to consider how their reactions can make you feel worse, and you end up having to take care of them when you are exhausted and in shock. 

A friend suggested we use the Caring Bridge website, which hosted free blogs through which patients can share updates with family and friends.  People could read the blog when they wanted an update, and I wouldn’t have to repeat the same difficult information over and over.  This was one of the best things I did for myself during treatment.  Caring Bridge allowed you to make the blog private and password-protected or public, whichever ou preferred.  Setup was easy; within hours of learning about it, I had a blog set up and ready to go. Then I emailed my friends and family the link and password information. In addition to giving me a way to share information, the blog also allowed people to leave comments in response to my entries.  The bulk of the next few chapters include portions of these blog entries and guestbook responses.  

People began leaving notes immediately. I needed their encouragement and was grateful to have it.  Here are some of the comments they left; just the beginning of the loving support that they would wrap around MG and me in the following months:

Sunday, December 2, 2007 

“Thanks for setting up this webpage. It's a great way for us to let you know you are in our thoughts and prayers. Plus we get to stay updated without calling you every day! Stay strong and optimistic. You have so many people on your side!”

 “I am in shock over this news but walking alongside a friend at work who has gone through similar experiences, I have watched her heal, problem-free, with also an unexpected sense of renewal. My family and I will always expect the same for you. You were made strong for many reasons...maybe this is one of them. You are in our thoughts every day.”

 

As you read my story you will see that, as much as I tried to lock down a plan for surgeries and treatment, this plan was in a constant state of flux. As much as we patients might want to have control over all of this, we do not.  Our cancer journey is dictated by any number of things: How long does it take to get test results? How soon can our new doctors fit us into their schedules? What other surgeries are already in our surgeons’ schedules? What are the schedules for the operating rooms the hospital? How long does it take to get the insurance company’s approval? And so on.  

Another thing you will notice in my story, and perhaps in your own, is that while we may have specific ideas about what we deserve in terms of treatment, our doctors may not agree with us, or our insurance company may not think it should be covered. And what insurance will cover is not always clear, nor is their message always consistent. This can be confusing and frustrating. In my case, I wanted very much to get a second opinion on my course of treatment, since this was my second breast cancer, and I wanted to get that second opinion at a regional cancer center. Ultimately, the only second opinion my insurance company would cover was that of another local oncologist. You will see mention of this issue in several of my blog entries. 

Blog: Monday, December 3, 2007 

Wow... that's really all I can say... all of your notes in the guest book were so moving.

I went to my local AA meeting today, as I am nervous about being on any type of narcotic. I got great reminders about the importance of faith; in God, in my support network, and in my doctors.

I do have faith in all of you, in my doctors, and also in God. When I choose to remember that, and to remember to be grateful for all that I have in my life, I forget to be afraid, so it's pretty clear where my focus needs to be.

I have done my homework in finding out what my coverage is for the surgeries, hospital stay, second opinions, etc. and I must say, THANK GOD I have good health insurance. We will still have to come up with some cash, but my coverage is very comprehensive. I am reminded, as I was when I got the final bill for treatment 5 years ago, that cancer is a very expensive disease to treat. It can make or break you financially, I believe, for life, if you don't have good insurance. So, we are very fortunate.

 

Blog: Tuesday, December 4, 2007 

… all your emails and posts in the guestbook have been great, and I am taking you all with me to see my surgeon today. I'll let you know what we find out during that appointment.

 

I loved how this blog helped me stay in touch with my family and friends while I was dealing with all of this.  During my first cancer, MG and I, with the help of our immediate families, pretty much dealt with everything on our own. But this second cancer was so much scarier, and we needed more support and more help this time.

Guestbook: Tuesday, December 4, 2007

“Thanks so much for setting this up so everyone can keep posted on your progress (which will be amazing of course) and let you know that you're both in our thoughts. We're sending SoCal sunshine-y streams of positive energy your way. Stay strong.“

 

“I want to let you know you are in my thoughts and prayers. Maria, you are a fighter - I mean that in the most endearing way, so I know this will be just another bump in the road for you - a tough one to get through but I know you're up for the fight (you always were and are). Please keep me posted. MG, take good care of her.”

 

None of my friends or family had been through a bilateral mastectomy or reconstruction, so they were not able to tell me anything about it. My Mom had gone through a unilateral radical mastectomy for her breast cancer, but wore a prosthetic, so she couldn’t offer much either, even if she would talk about her experience, which she would not. Fourteen years later, this is still true.  The folks who were my friends and family back then have thankfully still never been through this experience. 

Part II – Stage I Invasive Breast Cancer; Chapter 8 – 2007 Mammogram

It’s clear, no, wait, it’s not

As the years passed, follow-up appointments with my radiologist, oncologist, and breast surgeon became less and less frequent. In the first year they were every 3 months, then every 6 months. By the end of the fifth year, I was down to only annual check-ups. In August of 2007 I went in for my annual mammogram, which went smoothly.  The radiology tech said the images were fine, no repeats, no zoomed in images on the left breast (which sometimes happened if they had trouble seeing the tissue around the scarring from past surgeries and radiation).  What a relief!  Then, two weeks later, just one day after my 5-year cancer-free anniversary, I got a call from my gynecologist’s office, who prescribed the mammogram.  Her nurse called to say the radiologist had trouble reading the mammogram images, that there was some kind of densification – dense areas in the breast tissue that make it difficult to see what is going on – in both breasts, and they wanted me to go in for an MRI. An MRI uses a different technology – magnetic resonance imaging – than a mammogram does and can sometimes see tumors not detectable by mammogram. 

This news gave me a sinking feeling in my stomach, which soon became a little hard pit of dread.  I called MG at work with the news.  She responded as she usually does to iffy news about my health.  We will get the test and see what they say, and until we know more, we will hope for the best.  I was convinced that this was the beginning of the same process all over again, and that the cancer was back.  She felt I was being fatalistic, and that this was just another false alarm.  It was probably just a problem with the scar tissue in the left breast, and probably just my breast tissue getting denser in the right breast. Densification happens as we get older. I knew she was probably right, and I wanted to believe her, but my dread would not go away.  

I had been planning to go to the office on campus and do some work on my doctoral dissertation, so I went ahead with that plan, but I was preoccupied and filled with dread.  When I got into the office, I told a friend, “I just know this means the cancer is back.” She hardly knew what to say.  What would you say if someone told you that? I had not known her during the first cancer, I had not known most of the people that I knew now through graduate school, so my cancer history was a story they had heard, but not something they had experienced with me.  And because it was DCIS, I think they thought, like MG and I wanted to think, that it would not come back.  

I had never had a breast MRI before, and it was a strange experience.  I had had MRIs in the past, once on my right hip for a lipoma, which is a benign fatty tumor.  But breast MRIs are very different from other MRIs.  Like other MRIs, before I went into the imaging room a nurse put in an IV, for the contrast, which makes it easier to see any abnormalities in soft tissue.  Once I was in the imaging room, I could see that the setup was very different from the typical MRI, which usually involves laying on your back and going headfirst into the machine.

For starters, I was going to have to spend the whole breast MRI lying face down, and I would be going into the machine feet first. To make sure my breasts were not compressed in any way, I had to lay on a foam platform, which had three openings, one for each breast, and one for my face.  The technician had me lay face down on the platform, with my hospital gown open in the front, so the fabric would not interfere with the images. Then I stretched my hands over my head, so they wouldn’t get in the way of the images.  My IV was connected to an automatic injector, which stood outside of the MRI machine, and which contained the contrast solution. They offered me the choice to wear earplugs or headphones, or both – I chose headphones, but quickly learned that they did not protect my ears enough from the noise of the machine – and then asked what kind of music I preferred.  

Before they slid me feet first into the MRI machine, they gave me a small remote with a “hot button” to press if there are any problems during the procedure, like if I feel claustrophobic or have a panic attack. If you press the button, they talk to you through the headphones, and if you need them to stop, they stop.  I only used the button once, at the beginning of the test, when I realized that I needed the earplugs to protect my hearing. I did not use the hot button again because I just wanted to get it over with. Instead, whenever I felt panicky about the noise, or about why I needed to have this test, or about what I was afraid the results would be, I just tried to talk myself out of it. It helped that I had MG’s voice in my head, reminding me that there was no reason to panic because as far as we knew so far, there was nothing wrong with me. The first part of the MRI is done without contrast, and then the auto-injector pushes the contrast into your IV for the second half of the procedure. The MRI itself takes about half an hour, but the whole visit is more like an hour or longer.

On September 7, 2007 I wrote the following email to my siblings:

Subject: Clean bill of health at year 5

Hey everyone,

I wanted you to know that I had my annual mammogram two weeks ago, followed by an MRI, and I have been given a clean bill of health in terms of breast cancer.  The MRI was a follow-up to the mammogram, because I had not had one before and because the increasing density around my scar tissue was making the mammogram difficult to read - basically, we are just defining a "new normal". …

I have an ultrasound on Monday to validate the MRI findings - to verify that the only spots seen, which are located one near the lymph nodes on each side, are exactly that - lymph nodes.  I expect this to be true, since we are talking about both sides looking the same, which is unheard of when there is cancer.

So, I have made it to my fifth cancer-free anniversary, and I wanted you all to know.

 

I was confident that what I was telling people was true, as I had not gotten any calls after the ultrasound. (Back then, doctors usually called with test results, and definitely if they were bad.) In early October, on a Friday, my surgeon called, concerned that no one had compared the ultrasound and MRI images, or confirmed that the spots we were seeing in my breasts did indeed look benign.  So, she had the chief radiologist from the hospital Breast Health Center lined up to compare the images and give his diagnosis.  This was the same radiologist that had performed my core needle biopsy back in 2002, so we knew he was good.  She called the imaging center that had done the ultrasound and asked them to send her the images right away, so that she could have all of the images to the radiologist that afternoon.  They agreed to send her the ultrasound films.  

By that afternoon, when she had not yet received the images by messenger as she expected, she called them again and found out that they had sent the images in the mail, and she would not be getting them until the beginning of the next week. She was not willing to wait, though, so she walked down the hill from her office to theirs and picked up a copy of the images in person, and hand-delivered them to the radiologist that afternoon.  That’s how dedicated my surgeon was to her patients.  Her sense of urgency, rather than making me feel more nervous, made me feel more secure.  I knew her, so I knew she would be aggressive if she thought there was any risk of a positive diagnosis, but I also knew that she was upset that nobody else had bothered to compare the images and she wanted to confirm that their original negative report was actually negative. 

The dread

The feeling of dread, which had gone away after the ultrasound, was back, but I was doing my best to ignore it.  It was Friday, so I would have to try not to focus too much on it over the weekend.  My inner voice was telling me that we were once again on that road toward diagnosis, but MG focused on the positive, that the surgeon was just being careful because of my history, that I had passed the five-year mark.  Oh, how I wanted to be positive like her.  She is such a natural optimist, and I am not.

Luckily for both of us, I had been given a prescription for a low-dose anti-anxiety medication in August.  My prescription was only for half a milligram, but it was just enough to make it possible to sleep, even as I was struggling with feeling dread during the day. And of course, I was still trying to focus on my dissertation and other academic projects, like developing a poster for a conference.  My plan for this year was to be on the academic job market, which was just getting underway, so I was also looking for jobs and post-docs, working on my CV, and writing cover letters.  I was staying as busy as possible, which is fortunately very easy when you are trying to finish your doctoral dissertation.

Core needle biopsies

The next week, my surgeon called again.  The radiologist did not like what he saw when comparing the MRI and ultrasound images and wanted to do a core needle biopsy on EACH breast.  The spots didn’t look like lymph nodes to him.  I definitely felt like we were walking down a very familiar path.  MG tried to reign in my panic.  In my gut, I believed they were going to find atypical ductal hyperplasia again, on at least one side, if not both.  

On October 16, 2007, I updated an old college friend:

My life is crazy because of academic work, applying for jobs and post-docs, etc. Plus, my parents are damn near impossible to manage and I've just about given up trying.  And I'm on the diagnostic roller coaster that breast cancer survivors get on every once in a while. Next Friday I have to get a biopsy, actually, two biopsies, one on each side. Now that all of the radiologists and doctors have finally made up their minds, I just need to bide my time until next Friday.  Luckily for me, my youngest sister will be having twins any day now, so I will have plenty to keep me busy, as I'm staying with the 2-year old while she is in the hospital. As you know, nothing keeps you focused on the moment like looking after little ones.

 

I also sent an email to my siblings, letting them know my original message about my clean bill of health was premature, and I was facing core needle biopsies on October 26th:

… I'm feeling a little panicked, but we just got off the phone.  Some of this is feeling too much like the first time, but Dr. G. isn't being as aggressive, which makes me feel like maybe we are just talking about confirming false positives and not looking at any new cancer.  Dr. G. says that they are just being paranoid because of my history.  I would rather that we do this than not do it, but I wish we could do it, like, tomorrow, and get it over with!

I was doing my best to follow MG’s lead – try not to worry until we knew there was something to worry about.  Stop listening to that fatalistic feeling.  I went to some AA meetings to focus on living in the moment, rather than projecting about the test.

This time, I insisted they use Lidocain, not Novocain, so I wouldn’t have a reaction to the epinephrine.  The biopsies were performed with me half-seated half-lying down, face up, instead of lying face down on the special clamping table.  I think this was because of the location of the spots where they had to perform the biopsies, which were closer to the center of my chest, rather than near my armpit, as the biopsy had been back in 2002.  There was also a lot of blood during the biopsy, because we weren’t using epinephrine.  This would have been fine if I had not looked down after they did the biopsy on the left.  But I did look down, and when I saw all the blood pooling in my cleavage and running down my side, I started panicking.  So the radiologist decided we would take a break, and he had MG come in the doorway of the room and give me a little pep talk. Which included her saying something like “stop looking down” and “stop looking at the monitor.” After a few minutes the radiologist came back, and we did the core needle biopsy on my right breast. The radiologist said that he thought he got most of the spot on the right, and that I should hang tight and wait for the pathology results.

When my surgeon called me with the biopsy results, she said that they had found precancerous tissue (atypical hyperplasia) in my left breast, although my right side was benign. That feeling of doom in my gut was getting even stronger.  Here we were again.  Now we were scheduling a surgical biopsy. But again, we were not being too aggressive, I think because we were all assuming, including my surgeon, that at the most we were probably looking at DCIS again.  So, if that was the case, DCIS is not life-threatening.  But because it was on the left side again, I knew that even if it was just DCIS, I would probably have to have a mastectomy.

Oh no, not again

On November 5, 2007 I wrote an email to a friend who I worked with during my first cancer, which included these comments about the mammogram and core needle biopsies:

I am also in a bit of a mess in terms of breast cancer.  It appears that it may be back.  I had a bad mammogram this summer, followed by an MRI and an ultrasound which both looked suspicious on both sides this time, rather than just on the left, so I had what they call a core needle biopsy 2 weeks ago. I'm benign on the right, but I have precancerous tissue on the left, which is what happened last time.  So now I'm scheduled for a surgical biopsy on November 26th, the Monday after thanksgiving.  I'm nervous because if it's back on that same side, I can't do radiation again, so I will have to have a mastectomy.  I can't even imagine.

On November 6th, an update to my college friend:

As for me, the news from my biopsies is not as good as we had hoped.  Everything is fine on the right, but I have precancerous tissue in my left breast, which is where I had the cancer before.  I go in on Nov 26th for what they call an excisional biopsy, where they remove the precancerous tissue and then pathology determines if there is any cancer inside of that.  We went through this the first time, so I'm pretty nervous that the cancer might be back.

At the very least, if it is just precancer, I have to take Tamoxifin and induce menopause, as my cancer is very hormone receptive.  If there is cancer, then I have to have a mastectomy, something that pops up in my dreams every night since I heard about this.  If the cancer is as early stage as it was last time, I don't need chemo, but if it is at all invasive, then I do…

November 14, 2007:

I am doing okay.  Not thinking too much about the surgery or the possibilities of what comes next.  I think I just got tired of being so stressed out about that.  Now I've moved on to worrying about my presentation, the conference, and these interviews I have on Sunday morning about the fellowship I didn't get and this job I'm trying for.

Suddenly, I could see why some women have what they call a prophylactic mastectomy, which is removing a healthy breast just in case you develop cancer in the future.  I had already had one biopsy on my right breast.  Even though it was still healthy, it really felt like it was just a matter of time.  But that was a decision to be made after the surgical biopsy on my left breast, which we scheduled for the Monday after Thanksgiving.  In the meantime, I was getting ready to attend my annual conference, where I was scheduled to receive a national pre-dissertation award. The conference was in San Francisco, CA, one of my favorite cities to visit.  My brother A lived in San Jose, so I was able to spend some time with him during the conference.  And I was able to see a lot of the friends that I have been blessed to know during my years attending the conference.  

At the annual meeting of my special interest research group at the conference, I told people I would be having this surgical biopsy, and that I was afraid my breast cancer was back.  What I didn’t say was that in my gut, I knew it was back, I just knew it, and most days it was all I could think about.  I would walk around the city, or the conference, and in my mind would be this voice, asking “what are we going to do, what are we going to do?”

The surgical biopsy was pretty much like the one I had back in 2002, with the exception that they changed the drug they put in my IV before they rolled me down the hall to the OR.  It was just as effective at quickly stopping my anxiety, though, so I still called the anesthesiologist that administered it Dr. Feel Good.  I was starting to feel like an old pro at this surgical biopsy business, which is not a good thing.  But at least I was less anxious and less emotional during recovery.  Because of my sensitivity to surgical tape, the surgeon used a different kind of tape to cover my incision this time. She instructed us to dissolve the adhesive with baby oil when it was time to change the bandage, and that worked really well.  (This is noteworthy, because as you will see later, baby oil does not help remove every kind of surgical tape, and with some, you actually get quite the opposite effect.)

Later that day, I emailed my brother, who had sent a package of home-baked cookies:

Thank you so much for the cookies.  They are almost gone!

Surgery went really well, and aside from some pain, I am doing better than we thought. We should have the results some time on Friday.  I will try to remember to call you, but if I don't, please don't be afraid to call.

Thanks again, from both of us. 

The results

I was diagnosed with Stage 1 invasive breast cancer the morning of November 29, 2007, almost exactly five years after I finished radiation therapy for DCIS.  To say that I was shocked and disappointed would be an understatement.  I spent the entire day in a state of shock, unable to get warm or to stop trembling, crying on and off all day.  

Later that morning, I sent this email to a friend in Ithaca:

… I had an unreadable mammogram, which led to an MRI and an ultrasound, and then a core needle biopsy on both breasts.  This biopsy showed precancerous tissue in my left breast, although my right side is still benign.  So this Monday I had a surgical biopsy to remove the precancerous tissue and determine if my DCIS was back.  

The DCIS is not back, but I do have an invasive breast cancer in my left breast, probably Stage I, but we won't know until the lymph nodes come out during the mastectomy.  Because I had this breast treated with radiation before, I can't have breast-conserving surgery again, so I have to get the whole thing removed.  MG and I are almost decided that I will get reconstruction, and that I will probably do the right side as well, just to avoid having to go through all of this again on that side later.  The risk is pretty high, now that I've had two separate kinds of breast cancer on the left.

We won't know about chemo until the lymph nodes are tested, but my surgeon thinks that because I am so young, it will probably be recommended.  We are still wondering if we should get a second opinion or not.  I haven't talked to my oncologist yet; we have to see what she says.  I've only known this since about 9am this morning.  Thank God MG was home when she called.

… I'm pretty much still in shock, can't stop shivering.  MG had to go to work for a while, but is coming home soon for a long lunch, and then my friend J is coming over for tea at 3:30.

Chapter 7 – The Fear – I Don’t Recommend It

In the days after I finished radiation therapy in 2002, I often found myself crying for no apparent reason. Or for little, meaningless reasons. Really, I think I was crying for a lot of deeper reasons: frustration with the pain, anger that I had to go through treatment at all, relief that treatment was over, and fear that the treatment had not worked. I remember going to my sister’s home for the holidays that year, and being very emotional the whole time we were there.  This emotional volatility would come and go for a while.

Fortunately, the blisters from radiation eventually crusted over, became less painful, and started to heal.  I also became less raw emotionally, although I continued to struggle with fear of recurrence.  The radiation burn on my breast eventually faded, but I continued to have pain in my breast at the tumor site. Pain that my radiation oncologist simply said that I shouldn’t be having. When sufficient time had passed, my breast surgeon prescribed my first post-treatment mammogram. 

This mammogram did two things: it confirmed the cancer was gone, and it showed that one of my lymph nodes near the tumor site was swollen. There was a small chance that it could be cancer cells, but it could also be an infection. My breast surgeon did an in-office needle aspiration – drawing the fluid out – of that lymph node to test it for infection, and in the meantime put me on a general antibiotic.  By the time the test results on that lymph node were back, and confirmed it was an infection in the tumor site, the antibiotic was already working and the pain I had been feeling for months was finally gone. However, in the days between the aspiration and getting the results, I struggled with the fear that the cancer was still there.

That experience, even though everything turned out fine, was just the first of many false alarms that MG and I went through after my first diagnosis.  That is the life of someone who has been treated for breast cancer, or any cancer.  Anything that looks remotely related to your cancer, even if it was early-stage and successfully treated, means extra tests and holding your breath until you get the “all clear” yet again. Many survivors experience a similarly stressful reaction to regular follow-up exams, like annual mammograms. And no matter how many times the doctors tell you that you are fine, you may still react with some degree of fear. I think this is normal for anyone who has been through cancer or any potentially terminal illness that can come back after treatment.

I want to make a distinction here between that kind of fear, the fear that arises in response to having some kind of medical test done, or some kind of temporary health concern, and the kind of fear that I often struggled with during the five years following my first breast cancer.  And I want to make this distinction because I feel like I often lived my life in a state of fear: unnecessary, time-wasting, life-draining fear.  I call it unnecessary fear, because if you remember my initial diagnosis, it was Stage Zero, non-invasive, ductal carcinoma in situ.  Which is a particular cancer that can’t come back (or recur) because it had never escaped its original location in the duct. So, the chance of getting anything other than more DCIS elsewhere in my breasts was pretty small.  Now, at several points along the way in this diagnosis journey, MG and I were told that the odds were in my favor, that the chance of a negative outcome for a particular test were very low; and every time, we got the result that the odds said we would not get.  So, even though the chance of my DCIS coming back was low, I just couldn’t shake the belief that it would somehow come back.

It would not be an exaggeration to say that I lived a lot of the five years following my DCIS treatment in a state of fear about something that would probably not happen. And I regret that choice. Because I do believe it was a choice, a choice that I made on a regular basis. I listened to my fear and I let it control my life. I think I believed that if I was vigilant about the return of the cancer (if I let the fear run my life), then it wouldn’t surprise me when it came back. Somehow I would be ready, or something.

I hope that as you read that last paragraph it seemed irrational to you; because it was irrational. There is no way to prepare yourself for the return of your cancer.  Just as there is no way for your doctors to predict if your specific cancer will return, or when it will return, or in what part of your body.  Therefore, living five years of my life in a state of anticipatory fear of my cancer coming back was a waste of time and emotional energy, and I’m pretty sure that this daily choice may have had the cumulative effect of keeping my body in a state of constant stress, therefore leaving me more vulnerable to developing a new cancer.

It is precisely because I spent so much of those five years choosing to live in fear, that when I ended up being diagnosed with a new breast cancer at the end of those five years, I immediately felt responsible for bringing that new cancer on myself.  Now, do I believe that if I had not lived in fear I would never have developed the new cancer? No, I don’t believe that. I believe that my breasts grew cancerous tissue, which was fueled by estrogen, and that I would eventually have gotten cancer again.  Would I have gotten it so soon? I don’t know. But I do know that I would have had a richer, more enjoyable life during those five years if I had not chosen to live in fear.

The reason I write about this fear is that I am hoping to help you avoid making the same mistake.  There is no logic or sense to living life being afraid of illness or death.  It’s not that I don’t still have my moments, days, or even weeks where I struggle with my fear of recurrence and death; of course I am sometimes afraid.  But between those brief periods of being afraid, I choose to not be afraid.  And I am not just choosing to not be afraid of the cancer, which gives me more freedom to feel joyful and happy and at peace; I have chosen to let other fears go as well, fears that always held me back from doing things I wanted to do. 

For instance, I chose to give up my fear of riding in boats. This fear used to mean we couldn’t go on adventures like whale watches or ferry rides, which MG really enjoyed, as she loves boats and the water. Since treatment for my second breast cancer, I have been on whale watches off of the coast of Maine and Cape Cod, in the Bay of Fundy in Nova Scotia, and I have taken lake cruises and ferry rides, including an overnight cruise from Portland, Maine to Yarmouth, Nova Scotia. I no longer suffer from seasickness on boats. I also gave up my fear of heights, which allows me to be more adventurous.  MG has often said she misses my fear of heights, particularly when I am standing on the edge of a canyon or a cliff, which I would have been too afraid to approach in the past. Don’t misunderstand me; I have not become reckless. I don’t go skydiving or enjoy crazy carnival rides, although I do enjoy a good Ferris wheel ride. I am no longer afraid of walking across the Brooklyn Bridge, or of hiking up a mountainside in the Adirondacks. I also decided that I was tired of being afraid to ride horses, something I had always wanted to do, but which always made me fearful.  So I spent a couple of years taking riding lessens, and went horseback riding in Ireland, in Hawaii, and in the Adirondack Mountains. 

Do I wish that I could have lived those five years between cancers differently? That would be a waste of time, and I am done wasting my time. In AA, we talk about not regretting the past nor wishing to shut the door on it, and seeing how our experience can benefit others. I hope that reading about the lessons I have learned about my fears will help you spend less of your time living in your own fears.

What are Social Security spousal benefits, anyway?

 For anyone not aware of them, I want to share information about spousal benefits from Social Security.  

I was giving a talk recently about the difference in access to Social Security benefits between married and unmarried couples. The example I was using compared a married opposite sex couple to an unmarried same sex couple (see the chart below), explaining why the Federal recognition of marriage equality is important for the economic protection of older LGBTQ folks. But the principles apply to any unmarried couple. Although, because marriage equality is so tenuous, older same-sex couples continue to face the risk of being denied access to these benefits in the future. After my talk I spoke with an older heterosexual woman who was completely unaware of the spousal benefit. Which has me wondering how many of us don’t know about it. 

So here I am.

 

Social Security benefits are calculated based on earnings from the 40^th highest earning quarters of your work history. If you and your unmarried partner each retire at your full retirement ages (for example, my FRA is about 67), the partner with a history of lower earnings would receive a lower benefit. 

 

 

In this example, which was created in 2009, the higher earning partners qualified for a monthly benefit of $1,079, and the lower-earning partners qualified for an earned benefit of $264. For the unmarried couple, this meant a combined monthly benefit of $1,343 or annually $16,116. But in the legally married couple, the lower-earning spouse would instead receive $540, half of the higher-earning spouse’s benefit, increasing their combined monthly benefit to $1,619, or annually to $19,426. 

 

That spousal benefit does not, in any way, impact the higher earner’s benefits; doesn’t reduce their benefits. Similarly, if a couple was married 10 years or longer, and the lower-earning spouse did not remarry, they can still receive the spousal benefit based on their ex-spouse’s earnings record. Again, this does not impact the higher-earner’s benefits, nor prevent the person they are married to when they retire – if they did remarry – from receiving their spousal benefit if they were also a lower earner.

 

I hope that all makes sense. I will create another blog post about survivor’s benefits.

Chapter 6 - DCIS Treatment

Jump ahead to my second lumpectomy, which went off without a hitch. I asked for Xanex again, and the surgeon agreed, since it was such a small dose. After the surgery, my incision healed even cleaner than the first time. I had been afraid that the scarring would get worse, but it did not. Then we met with the oncologist, who talked with us about the type of cancer I had and my treatment options. Again, MG went with me to this appointment, and I introduced her to the doctor as my partner. The oncologist was very respectful of our relationship, and addressed MG as a concerned partner in dealing with my diagnosis. 

The oncologist said that my cancer tested positive for estrogen and progesterone, and that if I was older (I was only 35), she would recommend Tamoxifen, which is an estrogen blocker, and keeps estrogen produced by your ovaries from binding with any breast cancer cells in your body, so the cancer cells won’t become tumors. But because I was so young, and my cancer was not invasive, putting me on Tamoxifen would unnecessarily put me at risk for other health problems that are associated with premature menopause. Also, at the time, you could only take Tamoxifen for five years, and then you could not take it again. 

She advised us to reserve Tamoxifen for use later in life, should I ever get breast cancer again. Which, of course, we all hoped would not happen. But if we used Tamoxifen then, and I did get breast cancer again, I would not be able to use Tamoxifen in the future, so better to save it as a back-up plan. This made sense to me. She said that because the cancer was non-invasive, I would not need anything like chemotherapy, which was a great relief to me. She talked to us about what radiation therapy might be like, and her office set up an appointment with the radiation oncologist. 

I liked the radiation oncologist when we met her. She was also respectful of MG and of our relationship, as was her physician’s assistant, Steve. She was very detailed in her description of what radiation therapy would be like, and answered all of our questions and concerns. Basically, I would be getting radiation treatments once a day, five days a week, Monday through Friday, for six and a half weeks . The first five and a half weeks I would be getting radiation over my entire left breast, and the last five days, the radiation would be focused only on the tumor site. She dispelled my fears about developing any secondary cancers from the treatment – she said the risk was 1 in 3 million. We talked about how the technology involved and the location of the tumor made it possible to irradiate the breast without involving the chest wall, which would minimize any side effects like anemia or anorexia. There was a possibility of some fatigue, but every woman is different, so we wouldn’t know how the treatment affected me until I was going through it. 

We scheduled my first appointment, at which the technicians would identify the target zone for radiation and mark me up with a sharpie (they keep the sharpie marks fresh throughout radiation therapy – a necessary but unfortunate daily reminder of what you are going through). MG went with me to that first appointment, which took place the day after my 36th birthday. Happy birthday to me, right? 

After that first appointment, I went to my radiation sessions alone. For the first few weeks, my sessions took place at 8am, before work. Each session took only about 5 minutes from walking into the radiation room, getting settled on the table, being irradiated, and walking back out. It took longer to get undressed and redressed than it did to be treated. The first session was pretty emotionally traumatic. Just the reality of being on the table, and the awareness of why I was on that table, were pretty overwhelming. My drive to work from treatment took me right past our neighborhood, and I knew MG was still at home, so I stopped at the house and cried on her shoulder before heading in to work. 

As time when on, treatment sessions were less emotionally painful, or at least I got used to them. I got used to seeing the other patients in the waiting room, but never for very long, because they did an excellent job of moving patients in and out of the waiting room quickly. However, the treatments themselves were increasingly physically painful as the radiation started to work. Even before my skin started showing signs of radiation burns, I felt a deadening feeling in my breast, which eventually became pretty painful. As soon as I started to feel that pain, I asked for samples of Biofine Emulsion Cream, which is supposed to help prevent permanent discoloration from radiation burns. The physician’s assistant resisted giving me the samples, saying that I “shouldn’t be having pain already,” and that I didn’t need the cream, but I was persistent until I got what I wanted. The cream did not seem to help with the sensations I was having inside my breast, but ultimately it did protect me from permanent skin discoloration in that breast. So, whether I really “needed” it so soon or not, I’m glad I started using it when I did. 

He may have been right, as it turns out that months after radiation was over my breast surgeon identified an infected lymph node at the tumor site through my first post-treatment mammogram. This infection may have been what was causing me to have pain so early, or the infection could have been caused by the radiation itself. Either way, if not for this infection, I probably would not have been having pain so soon into treatment. 

If you are going through a health crisis, cancer or anything else, it is important that you be your own best advocate. Nobody else knows what is happening inside your body like you do. If you have pain, and the health care professionals around you say, “you shouldn’t” have that pain, you need to be persistent about finding out why you are having that pain. At the time, I didn’t now enough to realize that I should have been more persistent about getting help with the pain in my breast, but as I continued on my cancer journey, after learning my lesson from this thankfully mild infection, I paid closer attention to what was happening in my body and became more vocal about it. I got better at being my own best advocate. 

When I was going through radiation therapy in 2002, the treatment protocol for DCIS was five and half weeks of irradiating the entire breast, followed by 5 sessions of radiation targeting only the tumor site. By the time we got to those last five days, my tumor site was already so painful that I couldn’t wear a bra. The targeted radiation ended up creating a raw, seeping blister, which just happened to form on that fold between my breast and my armpit. So then, in addition to the pain I was feeling on the inside of my breast, I was having all of this pain on the skin of my breast. The only shirts I could tolerate wearing were men’s cotton t-shirts and even those could not prevent the blistered skin from folding in on itself. Which was very painful. 

In the days following the conclusion of my radiation therapy, I often found myself crying for no apparent reason. Or for little, inconsequential reasons. Really, I think I was crying for a lot of deeper reasons: frustration with the pain, anger that I had to go through treatment at all, relief that treatment was over, and fear that the treatment had not worked. I remember going to my sister’s home for Thanksgiving that year, the same sister that came to town for the surgeries, and just being very emotional the whole time we were there. 

Fortunately, the blister eventually crusted over, became less painful, and started to heal. I also became less raw emotionally, although I continued to struggle with my fear of recurrence. The radiation burn on my breast eventually faded. When sufficient time had passed, I was directed to go in for my first post-treatment mammogram. This mammogram did two things: it confirmed that there was no cancer left in my breast, and it indicated that one of my lymph nodes was inflamed. My breast surgeon did an in-office needle aspiration of that lymph node, to test it for infection, and in the meantime put me on a general antibiotic. By the time the test results on that lymph node were back, and confirmed that there was an infection in the tumor site, the antibiotic was already working and the pain I had been feeling for months was finally gone. 

This in-office procedure, even though everything turned out fine, was just the first of many false alarms that MG and I went through after my first diagnosis. That is the life of someone who has been treated for breast cancer, or for any cancer really. Anything that looks remotely related to your cancer, even if it was an early-stage and successfully-treated cancer, means extra tests and holding your breath until you get the “all clear” yet again. And no matter how many times they tell you that you are fine, you still feel what we survivors call “scanxiety,” and I’m not sure you ever really get used to it. The further you get away from your diagnosis, the more practice you have focusing away from the anxiety, but it never really goes away.