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:

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 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.

Monday, January 6, 2014

2014 Moon Phases Calendar

I made one of these moon calendars 2 years ago and everyone loved it so much that I decided to do one again this year. I have been saving up a bunch of security envelopes to make art with and this seemed like a great use of them. I purposely left the calendar black and white because I thought it would be fun to print out on a colored paper—card stock works best. The calendar is free so download it and pass it around to your friends.

I apologize for not getting this out on or before the first, but my grandfather passed away New Years Day and we traveled to Iowa to see family. It was really healing to be around everyone and I'm glad we were able to get there and back safely despite pretty terrible weather here in Chicago. Overall I'm thankful that the dust is settling from the craziness that was 2013 and am looking forward to a healthier, more stable 2014. Maybe I'll even blog again this year :)

Happy New Year everyone, enjoy! Download the calendar here.