Friday, May 22, 2015

The chemo plan

The Monday following all my tests we woke up early again in order to get to the hospital by 8:30am. I was getting an ultrasound of the suspicious area the MRI turned up on my left breast. We got to the waiting room and checked in and they told me to come back and get changed. I asked if Bill could come with me and they said he had to stay out in the waiting room. It's been difficult not to have him by my side for everything, but once I was back there I understood it was mainly for the privacy of other women, which I can appreciate. In the dressing room they had me undress from the waist up again, and put on a loose pink wrap top that tied on the side. They gave me a locker to put my things in and then I followed the nurse back to a second waiting room. I kept my phone on me so I could at least text Bill and have something to keep me busy while I was waiting. I sat in that room for about 15 minutes and then was called back to the exam room where I waited another 5 minutes or so for the doctor to come in.

Waiting for my ultrasound. Lots of pink in the breast cancer world.

The doctor was so warm and friendly—after introducing himself he said he was really sorry to hear about my cancer and was very genuine about it. He explained why I was getting an ultrasound—that there were suspicious findings in my left breast—and that he was fairly certain it was a fibrous cyst but that we needed the ultrasound to get more information. If it still was unclear he would get me set up for a biopsy. I laid down on the bed and stared at the cloud images on the ceiling. It was sort of cheesy, but calming. I pulled my arm out of my gown and placed it up behind my head as instructed. It is inevitable my hands will fall asleep in this position, so I was ready for it. When I started to feel the pins and needles he allowed me to stretch it out straight to the side or put my hand on my forehead instead. As he performed the ultrasound I asked how he could tell the difference between a cyst and cancer on the screen. He showed me on the screen—the black circular areas with clean edges were cysts (I have a lot of them in my breasts apparently!) and the grayish jagged areas were cancer (which he was able to show me on my right breast). As he looked for the suspicious area in my left breast he said it was really difficult to find, but after some time he was able to locate it. He took some notes on how to find it again and said that even though he still thought it was a fibrous cyst he thought it was a good idea to go forward with a biopsy. He would need to perform it so that he could find the right area easily.

I sat up and cleaned the gel off my body and got my gown back in place and then followed him out into the hallway and then into his office. He called the front desk to make sure I got on his schedule before my chemo started. I thanked him for everything and went back to the dressing room to get my clothes on, and then was directed to the scheduling desk to confirm my appointment a week from that day. They gave me all the information on what things to avoid before my biopsy because of their blood thinning qualities and I was all set. I headed back to the main waiting room to get Bill and told him what was happening as we walked out. He got concerned and I told him it sounded hopeful that it wouldn't be cancer. The concern was valid—if it did turn out to be cancer it would be very possible it was a different type of cancer given that it wasn't metastasized from my known cancer. This could significantly change my treatment and my outcome.

Putting that concern aside for a minute we decided to spend some time outside of the hospital before my chemo consultation that afternoon. Unfortunately there isn't much to do in that area, but the weather was so nice that we decided to walk a mile to the nearest good coffee shop. I had some designs I needed to finish up for work so I brought my backpack with my computer. We got to the coffee shop and ordered a couple drinks to stay, sat down at a table, and I pulled my laptop out to work. There were other people working on laptops, but I couldn't figure out what the wifi was—every network that showed up didn't seem to belong to the shop. I went up to the counter and said that I couldn't find their wifi and he said, "We don't have wifi, that's why you can't find it". What kind of coffee shop doesn't have wifi?!? I guess I sort of understand not wanting people to sit there for hours using your free wifi while only buying a drip coffee, but at least put a sign on the door. I got on my phone and started searching for a place that we could get lunch and where I could work at the same time. I noticed a local place called Wishbone was nearby and after we finished our coffee Bill called to ask if they had wifi. They did!

We sat down and looked over the menu to figure out what was vegan, asked our waitress some questions, and ordered black bean cakes, millet cakes, mango chutney, squash, greens, and rice. I pulled out my computer and started working while overhearing two women next to me angrily discuss being laid off from another advertising agency. It was a bit uncomfortable because they probably didn't realize someone sitting next to them would know about their previous employer. Bill tried to draw a picture of me but I kept moving so it turned out pretty funny. Our food arrived and I continued working, by the time we were finished eating I was sending my work off for review. It was time to walk back to the hospital.

Fashionable pink paper vest!

The walk was nice, especially with the warm sun on our faces, but my backpack was starting to feel a little heavy. Bill offered to carry it but I wanted the exercise so I decided to push through. We got back to the hospital and met up with my oncologist to start the talk about what chemo would be like. The room was small and hot, and there was a student in there that sat across the table from me but never said a word, which was a bit awkward. We had so many questions to ask that it didn't really matter, we just focused on what we needed to know. My oncologist said her nurse would also be in to tell me more about the drugs they would be giving me and would give me specific information about what the side effects were, but that I was welcome to ask her any questions I had. On the walk back to the hospital earlier we had finalized our questions to make sure we weren't forgetting anything.

Somewhere in the middle of talking we made a realization—my oncologist had just said something about "every three weeks" when we were under the impression that I would be getting chemo once a week for 4 weeks (something both Bill and I had written down from our initial meeting with the doctors). I asked her and she looked confused and said, "Huh, yes there must have been a misunderstanding somewhere." So we're not sure what happened, but it was confirmed that I would be getting 6 cycles of chemo, once every 3 weeks. At first this made me upset because it wasn't the shortened timeline I had been planning on. But the more we thought about it the more we saw the benefits. I would have more time inbetween cycles to recover and feel normal. And the biggest benefit of all was that I would be able to work more, which significantly relieved some of our financial stresses.

We also discovered that the Lupron—the fertility drug—would not be covered by insurance at all so if we wanted to move forward with it we would need to pay out of pocket. This wasn't much of a surprise and we had been preparing ourselves for it. We were told that we could petition the company to give us a discount on the drug. But knowing that it would probably still be a large expense, we asked again what the chances were that I would go through early menopause, especially since I am so young. Basically what it sounded like was that I had a 50% chance with or without the drug and that my age did play significantly in my favor. I think that was the point that, without even discussing it, we decided to just let fate take it's course. I was so exhausted from making decisions and it didn't seem like the cost of the drug was worth it for the miniscule amount that it might help.

This was the appointment when my oncologist told me that my hair would 100% fall out. I was glad that I had prepared myself already by cutting my hair off. Sitting in her office with short hair and finding out that news made me feel like I was already one step ahead of it. It was also explained to me that I would be getting a port before my second round of chemo which would be surgically implanted into my chest and would be where they would administer my chemo & fluids as well as draw blood. The port is necessary and beneficial because over-use of my veins could cause them to collapse. I would have a consultation with the surgeon the day after my first treatment.

We wrapped up our discussion and then my oncologist turned me over to her nurse so that she could go through all the information I would need to know about my drugs. She had brought a big binder full of information to give me and we went through each page. The drugs I would be receiving during my chemo infusions were 2 drugs that target my HER2 (Herceptin and Perjeta) and one drug that would target my cancer (Taxotere). The HER2 drugs would be administered for a full year—beyond my chemo—and have few side effects for most people. My hair would start to grow back at the end of my 6 cycles, when Taxotere is removed from my regimen. I would also be given some drugs through infusion prior to Taxotere to help with different side effects: one is Benadryl to prevent an allergic reaction, some anti-nausea drugs, and a few other drugs. I should take Zyrtec every day, they also recommended daily Prilosec (but I decided not to use this and deal with heartburn in a more natural way), and I was prescribed a sleep aid and anti-nausea medications (which I also chose not to take and deal with in more natural ways). I was allowed to take supplements as long as I wasn't taking super high doses of anything because my liver will already be processing a lot of stuff.

The side effects I could have: fatigue, nausea, loss of appetite, diarrhea, constipation, neuropathy (numbness of hands and feet), swollen ankles from liquid retention, full body hair loss, mouth and throat sores, dry mouth, forgetfulness, hot flashes & night sweats (from temporary menopause), fever, dry skin, rash, and more. We were warned that if my temperature reached 101.1 or higher I needed to page the doctor and immediately go to the ER. Throwing up was not tolerated and if I was I needed to let them know right away so they could adjust my medications. We asked a lot of questions and were able to get a lot of answers. I think we were actually the last people in the office that evening! It was so great that my nurse stayed as late as necessary to make sure we were comfortable and prepared for everything. Before leaving for the day they had me stop into another area of the office to pick up plastic jugs for my 24 hour urine. That Sunday I would have to pee into these jugs for 24 hours and store it in my fridge (fun!). At first they just handed me one jug and I said, "umm, I drink a lot of water so I don't know if this will be enough..." and she handed me a second one.

PEE JUGS

We stopped and got some food on the way home and I made phone calls to both my mom—who was in Iowa helping my grandmother after her back surgery—and my dad—who was back home. It was a lot of information to relay, talk over with Bill, and sit with. I felt a bit overwhelmed but also glad that I finally had a plan set before me. It made everything feel a little less daunting.

Sunday, April 12, 2015

Tests, tests, and more tests

My doctor called me with my MRI results a couple days after my test was done. She gave me the best news I could have ever gotten—the cancer hadn't spread into my lymph nodes! I had such a sense of relief after she told me, it was one of the things I was most worried about. She went on to tell me that there were suspicious findings in my left breast (the known cancer is in my right breast). It didn't look like cancer per say, but she wanted to order more tests to be certain. MRIs are very detailed but they are not very specific, so they can pick up all kinds of things that then need to be investigated further. An ultrasound would be the next step and then a biopsy if the results were still inconclusive. I went to work that day feeling very optimistic—any amount of good news is cause for celebration!

The next day was my big test day. Bill and I arrived at the hospital at 8am for a bone density scan, an echocardiogram, and a CT scan. We got to the front desk a little early and were met by a bubbly woman who got us signed in. Bill and I noticed almost simultaneously that my name was spelled "Kristin" instead of "Kristen" on my wristband. She checked the system and apparently it had been spelled wrong this entire time on all my tests and records. Bill and her joked around about it, she promised she would take care of it and to just ask her when we came out of the tests.

She pointed to the sitting room we would need to go to and we sat down and waited. The room had a number of people in it already but was completely silent so we exchanged a few whispered sentences before I settled into one of my many cancer books and Bill into his phone. After about 15 minutes a woman came to get us for the bone scan injection. They had to do this injection first because it took 3 hours for it to settle into my body. The room we were in had all kinds of radioactive symbols on things that made getting the injection feel a little scary. After the substance was injected into my arm she had to put the needle in a special container to be discarded. I saw a "hot bathroom" outside of the room and we laughed because it sounded funny, but I later realized "hot" meant that you have radioactive substance in you—the bathroom must flush to a specific location so it doesn't end up in the water supply.

Next was a little more waiting before my echocardiogram, then I was called by a nurse who brought Bill and I to an open room with a bunch of curtains for privacy. She had me remove my clothing from the waist up and change into a gown and then returned a few minutes later to place an IV. Since I already had the injection in my right elbow pit (proper name cubital fossa apparently) she decided that my right wrist was a good place for some strange reason. It took her a very long time to find my vein and I'm not sure if it really hurt or if I just thought it hurt because I didn't trust that she was very good at placing IVs. Having an IV in your hand is slightly inconvenient, in your wrist it's just downright annoying.



A short clip of my echocardiogram

The echocardiogram technician came and had us follow her to a room where she asked me to lay down on the exam bed. An echocardiogram is an ultrasound of your heart, and as the technician did the imaging she showed Bill and I different things about my heart. It was so cool to watch (and even hear!) my heart beat. Her and Bill talked about music a lot—her husband is in a cover band that plays different clubs in Chicago—so they had some experiences to share. I tried not to fall asleep because we had been up so early that morning and just lying still for 45 minutes made me tired.

After the test we discussed whether or not I could leave my IV in my wrist and go upstairs to eat since I would need the IV for my CT scan later that day. She left the room to find out while I got dressed. When she came back she said unfortunately I wouldn't be able to keep it in if I was going to leave the floor, something about it being a liability. So she removed and bandaged it—I would just have to get another IV later at my CT scan. Bill and I headed upstairs to the Au Bon Pain in the hospital and got mediocre (but expensive) salads. I drank a ton of water. This was the last I could eat or drink until after the rest of my tests. I had brought my computer and did a little bit of work while I could.

Getting my bone scan

When it was time we headed back to the waiting room. We waited about 20 minutes past my appointment time for the bone scan and since I had just drank all that water I had to go to the bathroom multiple times. Of course they called my name when I was in the bathroom so when I stepped out Bill was standing in the hallway holding all my stuff talking to a young technician. He lead us back to the bone scan room. For this test I didn't need to change out of my clothes, in fact the door to the room was open the entire time. I was instructed to lay down on a table and he explained that I would have to lay very still during the scan. He told me to place my arms close to my side, and in order to help keep them there they had this big velcro thing that they wrap you up in. He then slid me down the table until I was directly under a metal plate, just a few inches away from my face.

It was a bit claustrophobia inducing, probably only because of my terrible MRI experience. The bed moves verrrrry slowly back so that it scans your head first and your feet last. I fell asleep a couple of times and woke up hoping that I didn't move or jolt during my nap. After about an hour it was done. The technician had some trouble sending the images to the doctor so as he was troubleshooting that he ended up telling us that he is an artist—a sculptor—in his free time and Bill and I each shared about our own art. When the doctor finally was able to get the images and read them he came in and had me do one more quick scan of the left side of my neck and then I was done. As we walked out of the exam rooms and into the waiting area we saw the receptionist who said she was able to change my name in the system.

Getting all the holes in my arms

Now we had more time to kill before my next test, so we headed down to the cafeteria so Bill could buy a vegan wrap that we were surprised to learn they sell there. I still couldn't eat or drink so I pulled out some of the breast cancer literature that I was given while Bill contacted the different hospital billing departments to set up payment plans. We walked around the neighborhood a bit—it was so warm outside we were able to walk around in t-shirts! Then it was time for my CT Scan. After arriving at the office and checking in we were brought down the hall to another waiting area where a doctor asked me a couple medical questions and if I was allergic to iodine. We sat and waited a few minutes and then they brought me back to a changing room area where I undressed from the waist up again and put on another gown.

A short time later a technician came to get me and told Bill he wouldn't be able to be in the room with me during the test because of the radiation. I followed the technician into a room and he explained how the test worked. Again I would need to hold still and they would inject me with contrast dye (the iodine the doctor referred to earlier). He placed my IV in my left elbow pit since my right arm was already full of holes. It was sort of funny because the technician asked if he could put a bandage down over the IV to keep it in place—he didn't want the bandage to ruin my tattoo. I laughed a little thinking he was joking but realized he was serious, so I stifled my laugh and told him no, it would be fine. He got me all set up and then left the room to operate the machine from behind a glass window. This machine is like a giant circle that your body goes through and this light spins around you really fast. He had warned me that the contrast dye would make me feel like I was peeing my pants, and it did not disappoint. That was one of the weirdest sensations I've experienced during this whole process.

After the tests were complete I got dressed and the technician prepared a CD of my images that I could take with me. We would be meeting with my oncologist the following Monday to get my test results and hear more about my chemotherapy. I would also be getting an ultrasound prior to that appointment to check out the questionable area on my left breast that the MRI found.

Tuesday, March 24, 2015

Making decisions for the rest of our lives in 24 hours

"Hey Kristen and Bill, we know you weren't sure if you ever wanted to have kids, but you might want to make that decision in the next 24 hours."

Did you know that chemotherapy can send you into early menopause? Yeah, we didn't either. At our initial visit with the doctors they mentioned that we might want to talk to a fertility specialist but we didn't really understand why. With everything else going on we sort of forgot until my nurse navigator called one day and asked if I had made the appointment yet. When I said no she gently suggested that I might want to do that right away. She said, "You will want to know when your period will return, if at all." Wait, what? Ok... I guess I'll make that appointment.

We made the appointment for the same day my MRI was scheduled. We showed up in the morning and filled out some paper work. After a longer waiting room time than we expected, we were ushered into an office with a desk and two chairs—and a lot of clutter. A younger resident came and took some initial information from us and then we sat in the room and stared at the awards on the walls and the 10 year old magazines on the desk. Soon we were ushered into another, less cluttered room where we stared at more awards with the name of the doctor we were about to see. She had so many awards that they filled an entire wall and the ones that couldn't fit were stacked up in her window sill.

The doctor came into the room after a few minutes and introduced herself. She was bubbly and had the kind of strange personality where you later say, "she was really weird in all the best ways". Throughout our appointment she would say things like, "So your body will look at your eggs and say, 'Hey good lookin', you're a nice juicy egg, I pick you!'" It was nice to have something that was really hard for us to be presented in a bit of a lighter way.

Bill and I making smooshie faces after I got my hair cut

She explained to us how chemo attacks all fast growing cells, which we already knew about hair, bones, nails, etc. But we didn't think about the fact that eggs would also be fast growing cells. The chemo puts your reproductive system to sleep and if the eggs are destroyed in the process you may never get your period again. So if there was any chance we wanted to have children, we needed to make decisions now.

Our options were laid out in front of us, starting with freezing embryos or eggs. This procedure would cost around $18,000 just to harvest and freeze the eggs and because it is considered fertility preservation, it is not covered by insurance. If we chose this option and did decide that we wanted children sometime in the future, they would start the process with in vitro fertilization (if only eggs were frozen) or implantation (if embryos were frozen), which would be more very high costs. This just seemed like such a drastic measure to take when we are unsure about wanting kids. We're just looking for a way to not completely close that door.

The next two options are filed under experimental. First she told us about a drug called Lupron that basically makes your body think that it is going through menopause, which "hides" your eggs from the chemotherapy. It has very good results but you experience night sweats, hot flashes, and all the fun stuff that comes along with menopause (we did later find out that I'll have these symptoms whether or not I take Lupron, it's also just a side effect of the chemo shutting down that part of my body). This option costs around $800-$1000 per month and is also not covered by insurance, BUT they submit it to insurance to see if it gets covered and if not the drug company often offers you a better price (and sometimes its free). The second experimental option would be to go to Northwestern Memorial Hospital to be part of a study where they surgically remove one of your ovaries, cut it up into tiny pieces, freeze 80% for you and keep 20% for the study, and if you decide to have children they would harvest the eggs from the pieces of ovary to start the process of in vitro fertilization. This option would be free because of the study, but again, just a little drastic when we don't know what our future holds. The costs that would come later, like in vitro fertilization would still likely be expensive.

This part of our decision making has been the hardest on me so far. I already feel like I am losing so much control over my body, and the thought of possibly becoming post-menopausal at 34 years old just made me fall apart a little. Also having to make such a difficult decision so quickly was really hard on both of us. The night before our meeting with the fertility specialist I found some information on what to expect to happen to my body during chemo and I laid on the couch and sobbed. When we went home after the appointment—after being told that we needed to make a decision by the next day—I cried again as I relayed the information to my parents and my cousin on the phone. By that evening Bill and I had talked over every possible option and decided to move forward with the Lupron.


I don't have any images of the MRI since Bill couldn't bring his phone in,
but here are some animations of fruits and vegetables imaged in an MRI because it's pretty amazing :)
More here: http://insideinsides.blogspot.co.uk/

Back at the hospital after our fertility appointment, we had to rush to make my MRI appointment. First we had to stop into registration and then we had to walk down the hall to the the imaging center. They had me fill out some paperwork and then brought me back into another room where I was told to get undressed and remove all metal from my body. Bill came with me and had to leave behind anything that was metal as well as his wallet so all his credit cards didn't get erased from the magnets. As we were sitting in the waiting room a very drugged up senior woman came out of her appointment and told us all about how she needed to get sedatives this time because last time the MRI made her sick. It was a pretty funny conversation. The tech called me over and placed an IV in my left arm, then flushed it with saline. We were escorted back to the MRI room. She explained that the test would take 30 minutes during which I could not move at all. She then had me open my gown from the front and helped me crawl onto the machine bed and positioned me face down with my arms over my head and my breasts hanging through 2 holes in the bed. And of course, no appointment or test would be complete without 2 different people touching and repositioning my boobs.

I was a little concerned about my arms being over my head because my arms fall asleep very easily in this position, but I thought that maybe the angle they were at wouldn't be so bad. I was very wrong. It wasn't long after I was up in the machine that I started to get pins and needles. The tech had warned me against moving or squeezing the emergency ball they put in my hand during an image. You can tell when an image is being taken because it makes a VERY loud pounding noise (so loud that I had earplugs in). I laid as still as I could and tried to deal with the sensations in my arms while also trying to not having a panic attack from the claustrophobia-inducing space. I thought about how Bill was probably loving the sounds coming from the machine because it sounded like a really cool noise recording (and it ended up being the first thing he said to me when we left the appointment). But halfway through the test I just couldn't take it anymore. I waited for an image to complete and squeezed the ball.

The tech reached her head into the machine and asked if I was ok. I told her that I couldn't handle the pain in my arms, so she brought the bed down and out of the machine. She allowed me to lift my arms a bit and squeeze my hands but said that she couldn't reposition me because it would ruin the test and asked if I could handle just 9 more minutes. I took a deep breath and said I could. I was pushed back into the machine and tried to turn off the part of my brain that was focused on the pain in my arms. During the last image they injected me with contrast dye so an uncomfortable cold sensation also entered my left arm. I'm glad that I didn't have any sense of time during all this because Bill said it was closer to 15 minutes—not 9—before they finished the second half of the tests. When I came out of the machine my arms were completely numb so it was a little difficult to lift myself up off of the machine, but with a little help I was able to get myself into an upright position.

I was proud of myself for having gotten through that but I definitely dread the day that I will need to do another—probably in about 6 months to check the tumor again. It's incredible to think about how much all this testing has already become just a regular part of our lives and I am constantly amazed at our ability to adapt to this insane circumstance.

Monday, March 23, 2015

Cutting all my hair off

BEFORE: my long hair
AFTER: short and feeling great!

When I found out I would be going through chemo one of the first things I thought about was my hair. I wondered about how much of a chance there was that it would fall out, what I would look like bald, and if I would be embarrassed. Without having an answer to any of these questions, I decided to go ahead and chop off my long hair to prepare myself both mentally and physically for whatever possibilities were ahead. My friend Ingrid, a former hair stylist, offered to cut it for me. I was ready to get it over with quickly, so we planned to make it happen that weekend. I found an organization to donate my hair to that helps little kids going through chemo get a wig. It just felt like the right, and appropriate, thing to do.

Ingrid cutting my hair

We made plans to go over to Ingrid and Justin (her husband / our friend)'s home on Sunday night. Bill and Justin went on a beer run and Ingrid got right to work. She first sectioned my hair off into 2 pigtails to get more length for donation. I winced a little as she slowly and carefully cut through the thickness of each pigtail with her scissors. She handed me the 2 bunches of hair and I stared at this part of me that I've carried around for the last 6 years or so. It felt strange to see it separated from my body and I experienced a brief sense of loss as we pulled out the measuring tape to find out how much I would be donating. It came out to 15 inches! By the time Justin and Bill got back with their beer, Ingrid had already started shaping my hair into a style. Afterward the haircut we enjoyed a delicious dinner and each others' company. That night I became acutely aware of how lucky I am to have such great people in my life.

15 inches of hair to donate to Wigs for Kids!
Later in this process we were able to ask my oncologist how likely it would be that my hair would fall out. She gave me a warm but sympathetic smile and said, "It will, 100%." I'm slightly terrified to be bald. I know once I'm at that point I'll probably care very little about how people see me, but the process leading up to it gives me quite a bit of anxiety. I'm trying to focus on all the pretty turbans I can wear, distracting myself with the idea of a new fashion statement I can experiment with. But a bald head is one of the most visual indicators of the seriousness of cancer. There's really no easy way to hide it from anyone that I encounter—my coworkers, the clerk at the grocery store, strangers on the street. Soon, everywhere I go people will see me as a cancer patient.

Many of you don't know that my very close childhood friend, Deanna, died of a rare cancer (Ewing Sarcoma) when I was 16 and she was 17. My most vivid memory of her during the time of her battle was on a sunny day when we went on a country drive together to pass some time. She was driving the car and I was in the passenger seat. We were silent, enjoying the wind through the open windows, when all of a sudden I heard her say, "Huh!" I looked over at her hand as it held a chunk of her hair. She looked at me wide eyed for a moment and laughed—her signature dimples showing on her round cheeks—and then she threw her hair out the open window.

Deanna's ability to adapt to her situation with humor and grace has always been a shining example of how I want to approach hardship in my own life. I just never thought that I would also be dealing with a cancer diagnosis. Every day her positivity and courage continues to guide me during the harder times of this process. I've thought about this a lot and when my own hair starts to come out I plan to have Bill shave it completely off for me. I want to always feel like I'm the one in control, not the cancer.

Sunday, March 15, 2015

How my world was turned upside down Part 3

Read Part 1 and Part 2 first.

I tried to continue on with life as usual after hearing that I have a 95% chance of having breast cancer. As you may have guessed, this isn't exactly an easy thing to do. But I felt like it was important to keep myself busy by going to work and doing my usual activities. Monday passed and we still didn't hear anything. And then on Tuesday right as I arrived at work my phone rang. I looked at my phone and saw it was from my doctor so I quickly stepped back out into the hallway. "Is this a good time?" "Yes, definitely. I just want to get this over with." "We got the biopsy results....you have Invasive Ductile Carcinoma." She paused to let that sink in. "It is the most common form of breast cancer and is very treatable. I've already spoken with a woman at Rush who can help you with next steps. I just want you to know that you have time get things sorted out, there is no hurry." At this point I was numb, just fumbling around in my purse for a piece of paper to take down this information. I said thank you 5 times too many and she told me good luck, that they would be thinking about me and to make sure to check back in.

I called Bill to let him know what I found out. I think my voice was very factual sounding and unemotional. He expressed sadness and concern, but I think both of us were ultimately unsurprised at the news because we had spent the whole weekend preparing for this outcome. Honestly I don't even remember much of what was said during that phone call because everything was just so raw.

Bill bought me these beautiful flowers

Somehow I just went back in to the office and started working on my projects. Half way through the day I was able to call the contact at Rush. I left a message on her voicemail and got a call back from her later in the day. She introduced herself as the nurse navigator and that she would be helping me organize my treatment at Rush should I decide to go there. She explained that the doctors in their clinic treat only breast cancer, so they have all the most recent information and research. We also somehow figured out that we both lived in Winona, MN during our college years (she a number of years before me). They only do intake meetings on Wednesdays and it was already Tuesday, so it looked like I would need to wait a week to see the doctors so they had time to gather all of my information from the ultrasound, mammogram, and biopsy. More waiting.

I made it to the end of the work day without crying, but I was so ready to go home. Right as I finished my work up I found out that some things needed to be changed for the presentation the next day, and in order to get it fixed I would have been at work until 8 or 9pm. My Creative Director had no idea about anything that was happening, so when I got the news I would need to stay late I burst into tears and just blurted out that I just found out I had cancer. He was pretty shocked and told me not to worry about anything, to go home and get some rest and he would finish everything up. (He actually questioned why I was even there in the first place, which I suppose is a valid question, but I just needed to have the distraction.)

During the rest of the week I spent as much time with Bill and friends as I could. That Thursday we went to see Kim Gordon of Sonic Youth speak about her book Girl in a Band at the Musicbox Theater. Bill got our copy of the book signed and geeked out hard about getting to meet one of his long-time idols. Over the weekend I drove up to Wisconsin with some friends and stayed at a cabin in the woods. We relaxed, ate, drank, read, and walked in the woods. It was the reset that I needed before things got crazy.

The cabin in the woods of Wisconsin

Wednesday finally came and we drove to Rush to meet with the doctors. We first met with a woman from the Breast Cancer Task Force, an organization that helps women navigate their way through the breast cancer process. I had been put in contact with her earlier in the week and she offered to come with us to my appointments, which I gladly accepted. She brought a tote bag full of information, including a workbook that has very helpful organizational worksheets and lists of questions to ask the doctors.

After registration we were brought into an exam room where a young male doctor asked me a few questions about how I've been feeling, how I found the lump, and about my medical history. He then left the room and returned with 3 female doctors—the medical oncologist, the radiation oncologist, and the surgeon. I was very glad they chose to do my initial appointment this way because I was able to get the entire picture of my treatment instead of just getting bits and pieces from each doctor. I sat on the exam table with my gown open while they all lined up to squeeze and poke at my breasts. (This has become something of a joke among friends—I've lost count of the number of people that have looked at and touched my breasts since all this started. It's pretty much a daily thing at this point.) They also all checked my lymph nodes under my armpit and all said they did not feel anything abnormal and that at this point in time they had no reason to believe that my cancer had spread. They explained that they would order an MRI to be certain, but that everything was looking good.

Keith Haring mural at Rush University Hospital

The doctors left the room so I was able to get dressed and we all met back up in a conference room across the hall. They started right in on their plan, each of them talking about their part in the process. The medical oncologist talked about how generally surgery is used as the first plan of attack, but that new research shows that doing chemotherapy first can help shrink the tumor to a size that makes surgery less invasive, and that sometimes (though rarely) it even goes away completely with no surgery. So they wanted to start me out on chemotherapy to see how my tumor would react. The chemo would be once a week for four weeks. The surgeon said that ideally she would be performing a lumpectomy, which removes the lump instead of the entire breast. She explained that this could change with genetic testing (which I'll get into more later). The radiation oncologist explained that the lumpectomy would be followed with radiation every day, Monday through Friday, for 7 weeks. The amount of information was a bit overwhelming for me—we asked a bunch of questions and got clear answers but at one point I was just staring blankly at my notebook trying to figure out what to ask next. The doctors were very compassionate and recognized that I was getting overwhelmed, saying that I could always ask questions later too.

After we felt like we had a good handle on the plan, we had a consultation with the genetic counselor. She introduced herself and set a notebook in front of us that explained how genetics can effect cancer rates and recurrence. She took down all the name of my extended family (which I admittedly had to look up on a spreadsheet my aunt creates every year because my family is just that big), their genders, and if they've had any type of cancer. I have an aunt on each side of my family that has had breast cancer, an aunt I never met who died of leukemia at the age of 3, and my grandmother had pancreatic cancer right before she died. There were a few things that the genetic counselor was concerned about—my young age, breast cancer on both sides of my family, and my grandmother's pancreatic cancer because it is related to genetic breast cancer (as is ovarian cancer). She said it was completely my decision if I wanted to get the testing, and that those concerns do not indicate that it is genetic but they do point to a possibility. I said I wanted to know for sure.

The reason genetic testing is so important is that it helps make decisions for my future as well as right now. If my cancer is genetic then the chance of new cancers growing in the future are very high. For this reason, women with genetic breast cancer are encouraged to get a double mastectomy to remove all tissue that could possibly have cancer in the future. Because ovarian cancer is also related to this genetic condition women are also encouraged to get their ovaries and fallopian tubes removed around age 60. This information scares me a little, but I'm trying not to worry too much about what it might mean for me should genetic testing come back positive. We're still waiting on those results—they could take anywhere from 2-4 weeks—and there's no point in worrying about the unknown.

So that's how we continue to move forward—one day at a time, trying not to worry about the unknown.

Sunday, March 8, 2015

How my world was turned upside down Part 2

I don't have a lot of pictures to break up the story here so it's a lot of text. Future posts will have more images to illustrate the story!

Remember in Part 1 where I talked about how I went through a phase of denial? Well this is about where that part comes into the story. The day after the ultrasound and mammogram I went to work and tried to be as normal as possible even though it was really hard. I got a call mid-day from my gynecologist's office confirming they had gotten the imaging from the radiologist and that the next step was to get a biopsy. They said they would email me a list of places they recommended, and when I asked if the hospital I had been to for the radiology appointment was on that list there was a short pause and then, "No.... they're not." When I asked why I was told they thought I would get better care at another facility.

I completely mistook this information to mean the hospital I was at could not be trusted. And thank goodness because there is no way I could have cancer! Of course!—They obviously just had everything wrong. I casually looked the list of hospitals and decided to give Northwestern a call since Bill used to work there and we used to go there for all of our medical care. When I called Northwestern they said the earliest they could schedule me was a month away and I said that would be totally fine. I can wait.

I called my parents to let them know my decision and the following day they called me back saying they didn't think it was wise for me to wait so long after all. I told them I would follow up with the gynecologist's office (I hadn't yet) and see what they said. "No, we absolutely do not think you should wait that long to get the biopsy. Kristen, I don't know how much the radiologist told you about what they're seeing, but their reports came back highly suggestive of malignancy." Crap. Crap crap crap crap crap. I somehow got through the rest of the phone call without crying—she suggested that I call the other places on the list she sent me to see if they could get me in any sooner.

Unfortunately, however, that became a huge mess as well. The number I was given for Rush was for the internal medicine department, who had no clue where to send me. I got volleyed around to 5 different departments, each of which I had to try to explain my needs to while standing in the middle of a public place, trying not to cry. I finally got to someone who could give me answers, but they wanted to see me for a second opinion first before they would go into a biopsy and that would mean 2 different appointments and none of this was getting done much sooner than my Northwestern appointment.

I called Bill to tell him what the report said and I could hear his breath being knocked out of him over the phone. We quickly decided that all this waiting and calling around wasn't worth it. If I could easily get in to the original hospital I went to and get the biopsy over with, that would be best. I was able to schedule the appointment for Friday—two days later. What I later discovered about the general "mistrust" of this place was that no, this was not the hospital I would want to go to for my cancer care, but yes, they were perfectly capable of performing a biopsy and I did the right thing by going back there to get it done as quickly as I did.

On Friday Bill came with me to the procedure. Again there were complications because we got held up in the registration room and the ultrasound technician was NOT happy about that. So by the time we got to the waiting room she was already shuffling me into the room the procedure would be held in and there was no time or clarity to figure out if Bill could come in there with me. He ended up being out in the waiting room the entire time that I was getting the procedure.

The needle used for an ultrasound guided biopsy

This procedure is called an Ultrasound Guided Biopsy. The doctor came in and explained everything before we got started—he would numb the area with a tiny needle and then put a much larger needle in to get 3-4 samples for the lab. The ultrasound technician and him bickered for a good 10 minutes while they got situated around me (slightly reducing my confidence in them) and I ended up with a towel over my face apparently so I wouldn't be looking at the doctors armpit? I'm unsure, but I just went along with it. I had to keep my right arm above my head the entire time and was so uncomfortable that after a few minutes I asked them to prop my arm up with some towels, which they did. The part I was not prepared for was the loud clicking noise this contraption makes, so I jumped more than once at the sound of it. By the end of it I was extremely dizzy and the whole room was spinning around me. They gave me a few minutes to breathe, and once I felt better they placed a tiny piece of metal called a marker in the tissue to show where they have biopsied in case more samples are needed.

After the procedure was done the doctor started chatting about the crazy Chicago weather. He told me that when he lived in Korea as a kid it was always very cold in their homes—they didn't have very good heating. They used to write with pen and ink and when he would wake up in the morning the ink would be frozen. This information has absolutely nothing to do with anything, but I found it quite fascinating and the story helped ease my nerves. They gave me an ice pack to keep down the swelling and had me sit in my gown in the waiting room until they could give me a follow-up mammogram to make sure the marker was in place.

The same mammogram technician that was at my first appointment was there this time and she had me come in to take a couple images. When they were done she had me come over so she could show me what the marker looked like. I asked, "So... does that just stay in my body forever then or what happens to it?" She said, "Well... yes... it could. But has anyone really sat down and talked to you about your situation?" I told her all I knew was that it was highly suggestive of malignancy but I had no idea what that meant as far as my outcome was concerned. She gave me a sympathetic look and told me that most likely the metal marker would not stay in my body because I would need to get the lump removed. She then explained to me that "highly suggestive of malignancy" was a level 5 on their scale of urgency (basically), which was the highest number they rate imaging of masses. A level 3 would be something like "abnormal, keep an eye on it" and level 4 would be "abnormal, more testing suggested". This information sent me crashing back into reality. I asked her how much of a chance she thought there was of this NOT being cancer. She said she wasn't a doctor, but her guess would be about 5%—she wanted to be honest with me so I was prepared for the news. My eyes welled up and she gave me a hug. As I was getting dressed she took down my contact information so she could let me know of resources she had, and she also gave me her personal copy of a book that would tell me all the information I needed on what to expect next—saying she could come to my house to get it when I was done reading it. I was told I would get my results after the weekend, on Monday or Tuesday.

Bill and I headed home and discussed what this 5% number might mean for our lives. We were both clinging to 5% like crazy but had to face some harsh realities about what was about to come. We discussed possibilities and potential outcomes, and just cried. That weekend was by far the longest weekend of our lives, but I'm so thankful that I have someone to share this journey with me.

Read Part 3 here.

Saturday, March 7, 2015

How my world was turned upside down Part 1

I haven't used this blog for quite awhile due to general busyness. In fact I was about ready to let the domain expire, but then my world turned upside down and I decided to keep the site as a way to post updates of my situation.

I have breast cancer. At 33 I am extremely young to be dealing with this and it came as a total surprise. In mid-January something reminded me it had been awhile since I had done a self breast exam. In the shower I lifted my right arm, put it behind my head and started feeling around. There it was. To be certain I checked my left. Then back to my right. I took a deep breath—it's probably fine. A calcium deposit or something... too much coffee. I had my husband feel it to make sure I wasn't imagining it (I wasn't) and then called to make an appointment at my gynecologist's office to get it looked at.

At the gynecologist a really great nurse practitioner that I had seen before did an exam on me. We talked about what she was feeling and she said she was fairly certain it was only a cluster of cysts and not anything for me to worry about. I was on my period at the time and that can often cause small cysts to form because of hormonal fluctuations. She said I should notice it getting smaller a week or so after my period, but if I had any concerns we could always order an ultrasound to be sure. I felt like that was a good idea and decided to check it every few days to see if it changed at all.

Three weeks later it was still there. It hadn't grown from what I could tell, but it wasn't going away either. I was constantly thinking about it so I called to see if my gynecologist's office could go ahead and order the ultrasound just for my own peace of mind. Things got really weird at this point because no one was calling me back and I was starting to get really frustrated that they weren't taking this more seriously. Another week passed where I left multiple calls on their voicemail and didn't hear back from anyone. One day I discovered all their messages to me filed away in the "blocked messages" folder of my voicemail. I had been getting a bunch of spam calls at the time and had blocked multiple numbers and my doctors office apparently got mixed up in this! It was a disappointing set-back but I'm glad I figured out what was going on.

Finally, doctors orders

I got the ultrasound order and started making calls to get an appointment somewhere. The easiest way to do this (or so I thought) was to look at the list of who was in network for my insurance closest to our home. The first appointment I was able to get ended up being at a facility that moved from my neighborhood to a neighborhood 45 minutes away. So I started calling down the list and discovered something very important—breast ultrasounds usually have to be done at a hospital because most outpatient facilities don't have the correct equipment. After hours of calling around I finally was able to get in to a hospital just a few miles from my apartment.

Waiting & Waiting

During this time of waiting for the ultrasound order and getting an appointment, my husband, Bill, had a severe back spasm that required an ambulance and the emergency room. He was barely able to move for quite a few days after it happened and has required a lot of physical therapy (and time off work) to get somewhat back to normal. The day of my ultrasound he had a physical therapy appointment at the same time, so I drove myself thinking I would be in and out in an hour. I arrived early, got registered and then someone told me to go sit in a room. It turned out to be the wrong room—or rather, it was the right room but at the wrong time. I was supposed to be waiting in a different room so they could call me into the room I was currently in. No one knew I was there. I finally flagged down the ultrasound technician and she said she could fit me in after she finished up with a client from the emergency room.

Watching Bob Ross with this guy (who was apparently very into it)

I turned on the television and watched Bob Ross, which is always therapeutic. Some time later the ultrasound technician brought me in and had me undress and lay on the exam bed. The ultrasound only took a few minutes after which she left to go show the images to the radiologist. When she came back she told me to stay in my gown because they also needed me to do a mammogram. This is when I started to get scared. What does that mean??? I sat in the waiting room in my pathetic robe for an hour wondering why they needed me to do this. Thoughts that went through my mind included, "they must be incompetent", "they just want me to pay more money", "it's ok because I'm way too young to be concerned about anything", and "I wish my husband was here".

The mammogram technician called me in to the room and introduced herself. She had me stand at the machine and showed me how she needed to position me. When the plate came down I was surprised that it wasn't really as painful as I thought it would be based on what other women say. She took 3 different mammograms of each of my breasts and then left the room to show the radiologist. When she came back she said we needed more of my right breast (the one with the lump). My heart sank. I just knew this wasn't normal procedure. When the extra images were taken she left the room again and a few minutes later there was a knock on the door. She had returned with the radiologist who introduced himself to me. When he shook my hand tears were already forming in my eyes. When he said, "We're seeing an area that we're concerned about" I lost it.

He was very kind, but had a very concerned tone to his voice. There was a period of time after this that I went through some denial and got angry about how he talked to me like I was dying when we didn't know anything for sure. But looking back, he was responding appropriately with sincere concern and regard for my health. I appreciate that I had a doctor who was personable with me. He said he wanted to schedule a biopsy ASAP and explained that it would allow them to test the tissue samples to check for cancer. When he left the room, the mammogram technician sat me down at the table and told me that the reason she does this job is because her mother had breast cancer at age 40 and that she herself has tested positive for the gene (something I learned a lot more about later in this journey). She explained to me that is was important not to be worried and that there are a lot of resources out there should I need them. Having someone there to comfort me like that was huge, and she has proved to be a great source of encouragement since.

The calm night sky outside of our apartment window

I walked back to my car and tried calling Bill. He was still at his physical therapy appointment so I called my dad and sobbed on the phone, trying to explain what had just happened. He was somewhat speechless—none of us were expecting this outcome—but was able to help calm me down enough so that I could safely drive myself home. When I got home my head was pounding. I crawled into bed and cried—bawled even—for a few hours with Bill by my side. We tried to talk about what this might mean, but we had no information to work with, making it even harder to process. This was most definitely one of the hardest days of my life.

Read Part 2 here.