Chemo Round 3

I have a strong Christmas hat game.

I had my third round of chemo on Monday, December 19. I am now half way done with chemotherapy (unless something happens that requires us to change the game plan). Amazingly, I have experienced the fewest side effects with this round. I do not mean to give the impression that I feel great by any means, but I was a lot less dizzy on days 4 and 5 after chemo than I was during the first two rounds. Plus, I had much less bone pain on those days. My mouth got sore again on day seven (Christmas Day) but I was able to keep it from getting too bad by brushing my teeth (with Biotene toothpaste) after each meal/snack, using Biotene mouth wash and also the mouth wash prescribed by my dentist, which I use before bed each night. Biotene rocks.

The biggest negative change is that I am growing more tired and fatigued with each round of chemo. It makes me wonder how bad this will get by the end. In the immediate days after chemo, I am pretty bloated from the liquids given during chemo, plus the amount of water that I drink. (Every doctor, nurse, fellow chemo patient extols the virtues of drinking a lot of water to flush out the poison. I drink as much as I can given that water is starting to taste gross and ice cubes sometimes taste like garbage.) And, of course, when you drink a lot of water, you have to go to the bathroom a lot. Thus, I get up every two hours to go to the bathroom in the first few nights after chemo. Sometimes my pre-cancer insomnia comes back and I can’t get back to sleep after I go to the bathroom. By day 3 of this round, however, insomnia was no longer an issue. I’ve been going to bed at 8:30 (or earlier!) and sleeping until 5:20 am (if we do CrossFit) or as late at 7 or 8 if we do not. I sleep so long my back hurts from the inactivity. It could be that sleep has been helpful in alleviating some of the other side effects. Or, it could be that the chemo is starting to take its toll. Or it could be both.

Also, a troubling new side effect is that my fingers and toes are becoming sore and sensitive to touch. I’m hopeful that this is related to my fingernails and toenails becoming more brittle and is not the start of neuropathy in my hands, arms, feet and legs. Neuropathy is a common side effect of chemo. I had nerve pain in my right leg and foot due to my hip issues for many years prior to my surgery. I was on Gabapentin for at least five years. I just weaned myself off of it in January 2016. I’m hoping so hard to avoid neuropathy. Send me some positive vibes to avoid this. Dr. Coluzzi said that it will *usually* go away when chemo is done but sometimes it takes a few months.

I need to take a few minutes to discuss my hair. I shaved off the hair on my head several weeks ago. And I do have big bald spots on my head (including right above my forehead). But I also have areas where the hair on my head seems to be growing. In addition, I have one strip of leg hair that hasn’t fallen out, along with about half of the hair on my arms. I checked with my Mom and she said that all of her hair fell out during her chemo. Hmmm … I just found out that Taxotere, one of my chemo drugs, is the subject of a number of lawsuits for causing permanent hair loss. Oh good god. I hope that this is one of those baseless class action law suits. Now I have to worry about permanent hair loss. As if I wasn't worried enough about other stuff.

Overall, I’m doing pretty well at the halfway point. I’m back at work with my regular schedule. (I have taken three days off to get chemo and recover with each round.) I’m back at CrossFit. I’m losing a little strength and I become winded easier than before I found out I had cancer but I can still get through a workout. Miguel, one of my coaches, set me the goal of doing a handstand push-up before I finish chemo. I have two months. I am going to try like heck to do it. 

I have an upcoming appointment with my surgeon on January 5. She is going to check my progress. Hopefully she will agree that those tumors are shrinking!! Also, I am going to start to hear about my surgery options. She told me that a lumpectomy was out of the question. She said that she would not be able to save my nipple.  So I know that I am looking at a mastectomy of my right breast. But I do not know whether they will recommend a double mastectomy or whether they will recommend more extensive surgery. Ultimately, the decision will be mine. It’s a big decision. 

Pre-round three swim suit photo.

Genetic Testing

As part of my treatment game plan, my surgeon, Dr. Coleman, suggested that I be tested to see if I have any cancer gene mutations. This is important information for me to consider as I decide whether to have a double or single masectomy.

From the National Cancer Institute website: "BRCA1 and BRCA2 are human genes that produce tumor suppressor proteins. These proteins help repair damaged DNA and, therefore, play a role in ensuring the stability of the cell's genetic material. When either of these genes is mutated, or altered, such that its protein product either is not made or does not function correctly, DNA damage may not be repaired properly. As a result, cells are more likely to develop additional genetic alterations that can lead to cancer."

"A woman's lifetime risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful mutation in BRCA1 or BRCA2."

I met with a genetic counselor in November who spent about an hour going through my family history and explaining the process to me. She calculated my risk for a mutation at the time as only 2.7%. A number of studies have shown, however, that triple negative breast cancer tumors are associated with BRCA1 carriers. Plus, my family had a "mother-daughter pairing" of breast cancer which is also a possible indication of a mutation. I decided to go ahead with the testing and I opted to have them test for all mutations. At this time, they are not sure what all mutations mean so I was warned that I may test positive for mutations and not have any guidance for me on how to plan a treatment around those types of mutations.

On December 14, I returned to the genetic counselor for the results. The meeting took five minutes. I have no mutations or variants in the genes that they tested. Yes!

"... No mutations or variants of unknown significance were detected. Due to limitations of the current testing, negative test results in a woman diagnosed with breast cancer must be interpreted within the context of her personal and family history. Genetic testing was appropriate for Ms. Hable, given her diagnosis of early-onset triple negative breast cancer and a mother-daughter pair with breast cancer. There is no family history of ovarian cancer, male breast cancer or multiple HBOC-related cancers in one individual, however.

"Ms. Hable's cancer might be more appropriately classified as 'familial', i.e. due to multifactorial causes, the presence of low penetrate genes or a clustering of sporadic occurrences."

" Implications for Family Members: ... Women who had both a mother and sister with breast cancer were 3.6 times as likely to develop breast cancer as women with no affected first degree relatives."

The Indignities of Cancer

My wonderful hairdresser thought I might feel better about shaving my head

if she did up my make-up and gave me fake eye lashes.

One day, right after I found out I had cancer, I was doing the Workout of the Day ("WOD") at my gym. This is before I started chemo and I was feeling fine. It was a long workout that involved wall balls. Wall balls are my nemesis as I rarely breathe properly and end up panting and feeling like my arms might fall off. (For those who might not know, "wall balls" are squatting below parallel and then standing up as you throw a weighted ball at a 10-foot target. The prescribed weight of the wall ball for women is usually 14 pounds.) And I remember thinking, screw it, I have cancer, I can just stop now and no one will question it. I had my moment and then picked up the ball and started getting the wall balls done. And I just repeated over and over, no one is going to feel sorry for you.

Fast forward to this week. I'm a week out from chemo and I'm slowly crawling out of the hell hole of it and starting to feel better. But my mouth hurts and my tongue has white bumps on it, and my throat hurts. And I'm so effing tired but I am determined to work my regular hours at my job. Seth had a dentist appointment on Tuesday so I had him ask the dentist if he could recommend any mouthwash or toothpaste that might help. The dentist ended up writing a prescription for me for some mouthwash. Being the cautious person that I am, I emailed my oncologist on Wednesday morning to make sure that this was OK with him. He usually responds within the hour but I didn't get a response until 4:50 pm. My doctor was out of the office so his partner emailed me. He said that he thought I had thrush (very common for chemo patients) and he had called in a prescription for me for that. I Googled it because I wasn't exactly sure what thrush is. It's a yeast infection in your mouth. GROSS! So, I left work at 5 and traffic was bad. It took me 30 minutes to get home and I live 2.7 miles from the office. And somewhere in those 30 minutes I lost it and started feeling sorry for myself. First I lose all my hair and feel ugly and now I have a yeast infection in my mouth. I'm not even mentioning the constipation/diarrhea/hemorrhoid extravaganza. Could I be any more disgusting?

I got home and ate peanut butter cups and drank ginger beer (non-alcoholic) and cried. FWIW, ginger beer is one of the few things I can still taste and that tastes good to me so I drink it a lot. It's all carbs. I'm sure I don't need the sugar but it's worth it just to taste something. The other day I had a donut and it tasted like cardboard. I threw it away after eating half of it. What's the point if you can't taste it? A DONUT!!!

I felt sorry for myself for the rest of the week. I ate french fries (with an obscene amount of salt) and cried a lot. 

And then on Saturday morning, I came to the revelation that I was feeling sorry for myself and that was no way to act. This is not how I want to act. This is not the person I want to be.

I got dressed and went to the 8 am CrossFit X-Diesel workout. As I had each day that I worked out, I wore a head scarf to cover up my bald head. But half way through this workout, I ripped it off and worked out with my bald head showing. It was a long workout with a 35-minute time cap. I was the last one done but I finished it. It felt good. I know that CrossFit seems like a cult or crazy to some people but it is something that really keeps me going. I find myself in those workouts. I find the person that I want to be in those workouts. And that person is not someone who feels sorry for herself (for very long).

Chemo Day Round Two

I had my second round of chemo today, Monday, November 28. We had a little hiccup with getting a good vein. They are trying to save my "big veins" for later. These are the ones in your elbow creases. Last time, they found a good one in the middle of my left forearm. They tried to find its counterpart on the right side today but it wasn't producing enough blood so they went for the good vein. They check my blood before each chemo treatment to make sure I'm in good shape to handle the chemo. My white blood cell count was high because of the Neulasta and the steroids I take the day before, the day of, and the day after chemo. This is a good thing.

Dr. Coluzzi did a breast exam today. Getting your bra and shirt somewhat off while having a major IV in your right arm is no small task. Thank you, Perla, for helping me or I'd still be trying to get my left arm out of my sleeve. Dr. Coluzzi was very pleased with what he felt and saw. He said that he could see that the tumors were smaller than when he had last examined me and that the lymph node area felt great. He was pleased and believes that we have the right chemo combo. This is good news. Chemo is the only option for people like me with triple negative breast cancer (TNBC). Based on what I've read, chemo-resistant tumors for TNBC patients are a very bad thing. They can try to cut the cancer out in surgery and do radiation but the recurrence rate is much higher in that case. So the fact that Dr. Coluzzi believes it is working is a huge relief.

The nurses at UCLA Health who administer the chemo are true angels. I was loopy from the pre-chemo drugs and, as a result, a bit clumsy and I managed to knock over my water bottle. They cleaned it up with a smile.

Round 2 swimsuit pic from Saturday, November 26. It is very common to gain weight during chemo, per my on-line support groups. (Another thing that is different than in the Julia Roberts movie.) I don't really care if I gain or lose weight during chemo as long as I can remain as healthy as possible. That is the goal. I'm trying to get in my usual 165 grams of protein in each day. Ideally, I eat 165 grams of protein, 185 of carbs and 40 of fat. I've been a little off my game since the cancer diagnosis. Also the first week of chemo is tough and sometimes all I can eat is saltines and pita chips. Chemo affects your taste buds to the point where you either can't taste at all or foods taste differently than they did before chemo. I crave chips and salsa and drink a ton of non-alcoholic ginger beer. You do what you have to do to get through. The most important thing is getting rid of all the cancer cells in my body and doing whatever it takes so that they don't come back. Hopefully many more cancer cells were killed today!

The First Three Weeks

As I mentioned in my previous posts, I have my chemo treatments three weeks apart. Going into my first chemo treatment, I had no idea what to expect. One of the first things that went through my mind when I found out I had to do chemo was that Julie Roberts movie where she takes care of a good-looking guy with cancer. (I looked it up. It is called Dying Young and it came out in 1991, the year I graduated from high school.) I recall there being a lot of vomiting.

Dr. Coluzzi, my oncologist, told me that chemo treatment has come a long way since then and that they can give you a lot of different drugs to prevent many of the nasty side effects. He said I probably wouldn't puke. And if I do have any side effects, he wants to know about them because they can probably give me something to help with that.

Nonetheless, if you read stories from people on-line (and as Dr. Coluzzi and all the nurses say) everyone reacts differently. Here is what it was like for me.

I received my first round of treatment on Monday, November 7. In addition to the two chemo drugs (TC), I was given intravenous Benadryl and anti-nausea medicine. It made me a little loopy and made me fall asleep, which is a good way to pass the time. It takes nearly five hours for chemo.

Right after getting chemo, I was fine except for feeling a little loopy. (I actually went and got my nails done right after chemo. This sounds crazy but I just hadn't had time before and there is a salon across the street from our apartment. I had them take my existing polish off, cut my nails short, and then had them buffed. No new polish or cuticle cutting. You aren't supposed to get mani/pedi during chemo but I thought that this would be OK. And I really needed it. I didn't have anything bad happen so it seemed like a solid decision.) Day 2, Tuesday, I was fine. Just tired and a little nauseous. Day 3, Wednesday, I felt fine in the morning but by the afternoon, I started to feel awful. As I mentioned before, I'm not sure if it was the chemo or Neulasta shot that was causing the deep bone pain and the achiness. Most of that pain was gone by Saturday but it was replaced with fatigue like I've never felt before. There is no pushing through this fatigue. I've seen it referred to as crippling fatigue, which is pretty accurate.

On Monday (one week after chemo), I started to feel sick again, with an incredibly sore throat. That can be a side effect of chemo so I thought that was what I was dealing with but then I realized that I had a cold. And, what a cold it was. It started in my head and then worked its way into my chest. It gave me vertigo. Dr. Coluzzi and I corresponded and, because I did not have a fever, he thought that it was just bad timing. (I had traveled to Minnesota right before chemo and had been at a conference with hundreds of strangers. All those public places made it easy to pick up a virus. I did get a flu shot right before I found out I had cancer.) The reason for the concern with the fever is that chemo destroys white blood cells and a fever can mean that you have an infection and is definitely no bueno. I have to monitor my temperature pretty closely for this reason. Had it not been for the cold, I think I would have bounced back in about a week.

Despite having a cold, I tried to make weeks two and three after chemo as normal as possible. I worked a full week in week two and three days in week three (since it was the Thanksgiving holiday.) I was tired often and I did leave early a few days to take a nap. I also returned to the gym. My co-worker, Justin E., mentioned that studies have shown exercise increases the success of chemo. I looked it up, it is true. So, I am committed to continuing to workout as much as I can for as long as I can. One day, I just went to CrossFit and did the warm-up stretching and then I walked laps around the block while everyone else did the WOD (Workout of the Day). Once I felt a bit better, I started doing the regular WODs with everyone else. Sometimes I do lighter weights than I normally would use but I try to make it a good workout without making myself so fatigued that I can't function. I'm learning a lot about my body and I will keep trying to find the right balance. I overdid it once but otherwise I think I am making wise choices. Plus, the support from everyone at the gym has been amazing. They make me feel like a rock star for just showing up.

Dr. Coluzzi says that chemo is cumulative and that with each treatment, I'll probably feel a little more tired and have a few more side effects. He said my hair would start falling out on Day 18. Accurate. I have some left but it is thinning quickly. Next I can expect to be more fatigued and my finger and toe nails will start to become discolored and weak.

As I mentioned, I wasn't sure what to expect from chemo. I wasn't sure how much time to take off from work or whether I would be able to work out. Three days, and yes.

Above is right after our Thanksgiving workout at Orange Coast CrossFit. Seth and I did 104 sit-ups with a 14 lb wall ball that we tossed back and forth. Then we did Cindy. 24 minute AMRAP (as many reps as possible) of 5 pull-ups, 10 push-ups, 15 air squats. I did modified pull-ups and push-ups from my knees but I got through 14 rounds plus 5 (modified) pull-ups.

A Pull-Up!

Seth thought it was important that I get this on video. It makes me happy to watch it. I worked really hard for this. The funny thing is I probably would have never even known that I could do one if not for my CrossFit Coach, Miguel. He kept insisting that I should try and I kept insisting that the only way I would be able to do a pull-up was with a forklift. But I tried. And I did it. (The video is the fourth one I've done.) The first one was about a week after I found out I had cancer. This one was yesterday, almost three weeks after my first round of chemo. I'm not sure what role cancer played in my pull-ups but I do feel like going for it a little more than I used to.

Happy Thanksgiving .... My life is pretty darned good

As I walked home from Target this morning, tears and snot (of course!) were streaming down my face. I didn't even realize it at first.

As you might imagine, when you are waiting for test results to find out if you have cancer and then when you are diagnosed with cancer, you have a lot of thoughts about living and dying. My coworker, Justin S., asked me if there were things I wanted to do with my life that I hadn't done yet. He told me he thought I was funny and that maybe I should try stand-up comedy. You should just go for it, he said. I told him, actually my life is pretty good. And stand-up comedy is way harder than it looks! I've done a ton of things that I have always wanted to do. Sure, there are so many things that I still want to do but think about this. I got to tell Ryan Braun that I loved him while he had his arm around me while standing on the field at Dodger Stadium this year. 

And, anyway, I don't plan on dying any time soon.

Why was I crying today? Because I live across the street from Target and this morning I got a cup of coffee and slowly wondered around the store. I bought myself a new shirt and some cleaning supplies. And then I walked home in the sunshine and 70 degree weather. And I cried because the sunshine felt good and I like my new shirt. And because I can't wait to scrub toilets with my new toilet wand. OK, maybe not that.

And because .... on Thanksgiving, my co-worker Justin E. and his wife, Laura, had us over for Thanksgiving dinner just because they knew Seth and I have no family in the area. Laura was diagnosed with breast cancer last year right before they got married. And just because she knows what it's like and because my hair is falling out, Laura has insisted on ordering me some hats. We had to measure my head.

And because ... my freshman (high school) comp teacher and his wife sent me a card the other day. I probably never said this but I would not be the writer I am today without Mr. Holle. I use those writing fundamentals almost every day.

And because ... my Ladies of Cobra Kai teammates (my softball team back in MN) sent me a care package.

And because .... my friends at Timberwolf CrossFit sent coffee and cards and so many well wishes.

And because .... my new friends at Orange Coast CrossFit hug me when they see me and make me feel happy every time I show up. Also, I did a pull-up. (I found a post-it in my desk the other day with 2016 CrossFit goals that I wrote in January. Pull-ups and toes-to-bar were on the list and I can do both now. I did three toes-to-bar in a row the other day.)

And because ... I have so many friends that just text and call to check up on me. Just to see how I'm feeling. And the cards, the awesome, funny cards keep rolling in. And all the Facebook messages are so wonderful and awesome. And the Rhude family from my high school basketball days!

And because ... my family checks up on me and I always feel the strength behind their messages. Keep sending me those cute pics of your kids. No, I am not sick of them.

And because ... Seth continues to make fun of me everyday and is an absolute rock. There is no one I would rather have by my side.

Much love to you all. Thank you for supporting me through this. I hope you had a wonderful Thanksgiving.

Chemo Begins

To prove that we are crazy, we moved to a new apartment on November 1. On November 2, we flew to Minnesota for a work conference for me and to visit our friends and family. Dr. Coluzzi thought that the best thing I could do would be to get in the right mind set to start chemo so he thought the trip would be OK to do. We really had no choice on the apartment as our lease was up and we had already given notice when we found out about the cancer. (The apartment is a topic best left for another time.)

We arrived back in California at 7:30 pm PT on Sunday and started chemo on Monday, November 7 at 9 am.

Here I am just before starting chemo. Yeah, about that pink hair. Loved it at first. Now I wish it were just a regular color because it screams, ask me why I have pink hair.  The good news, it's going to fall out any day. See, how that is now good news.

My chemo drugs are cyclophosphamide (or cytoxan) and docetaxel (or taxotere). TC therapy is pretty common for breast cancer. Dr. Coluzzi discussed adriamycin with me and said that it had some nasty side effects that he'd like to avoid if possible. I will do six rounds of chemo, three weeks apart. I do chemo on Mondays, except for my last round, which will be February 21 because of President's Day.

About 24 hours after chemo, I will receive a Neulasta shot to boost my white blood cell count.

My thoughts on my first round of chemo. Ugh. Ugh. Ugh. How the hell am I going to get through five more rounds of this?

The chemo itself went fine. They shot me very full of liquid Benadryl so I was a little woozy and sleepy. My vein hurt when they gave me the second chemo drug but they said that was normal. Other than being tired and a little sick to my stomach, I was fine afterward. I got up the next morning and did CrossFit. I used a little lighter weights than usual and didn't quite do all the warm-up burpees but I did most of it and I was fine.  I was fine all day Tuesday (except for the election results ... which keep me up at night with worry). I got my Neulasta shot on Tuesday at 3 pm.

Wednesday afternoon "it" started to hit me. I do not know if it was the chemo finally hitting me or the Neulasta shot but it completely wiped me out. I tried to take just ibuprofen for the pain. On Thursday,  I returned to work. I was in pain and did not feel like I could think as clearly as I would have liked. Also, hello vertigo. (I suffered from that for several months about two years ago and it is not welcome to come back.) Finally on Thursday night, I broke down and took the Vicodin my doctor didn't think I would need for the Neulasta. Life saver. Made it through Friday at work. The pain I feel is deep in my bones. Think of the achiness you get from the flu and then multiply it by five or so.

On Saturday morning, I felt better so I went to CrossFit with Seth. I modified the workout to what I thought was a manageable amount but it caught up with me. We went grocery shopping after the workout and after showering. I was in the check out line at Target when I told Seth that I needed to go home. I sat in the car and then he took me home. I crawled into bed and fell asleep immediately. It's now Sunday and I haven't done much since then. Overall I feel better. The only thing that really aches is my throat. I've got two more weeks to recover before we do this all again. I've heard that Claratin helps with Neulasta pain so I am going to try that next round.

Some Good News

On Monday, October 24, I met with my oncologist, Dr. Paul Coluzzi at UCLA Health. We discussed my chemotherapy plan. Because of the size of my tumors and because I have triple negative cancer, it was decided that I would do chemotherapy prior to having a mastectomy. This is called neoadjuvant therapy. Chemotherapy is the best--and really the only--option for killing triple negative cancer. Doing the chemo first would enable he and Dr. Coleman to determine whether the chemo was effective in killing my form of cancer. Hopefully when the mastectomy is done, it will be removing dead cancer cells/tumors.

Later that week, on Thursday, I had a second ultrasound and a pet scan. This was necessary because my MRI had shown two worrisome spots--an additional spot on my right breast and one on my left breast. The pet scan would help determine whether the cancer had spread to my left breast and--finally!--determine whether that foamy tumor was coming from some other part of my body.

The second ultra sound gave me some hope. The radiologist described what she saw and it corresponded to what I felt. She said that the lump I could feel was not the main lump (the biggest) in my breast and that she bet that the bigger lump had felt like it had come out of nowhere in the last month. Yes, exactly! I felt so awful and I like I gave myself a death sentence by not getting to a doctor sooner. It felt good to hear and then have Dr. Coleman say it, too. This thing is growing so fast, it is unlikely that it would have shown up on a mammogram a year ago. Fast-growing is not awesome but I needed to hear it wasn't my fault. The radiologist and tech that day said that they would see me again when I was cancer free at my next check-up. I cried.

I had the pet scan after my ultrasound also at Hoag Hospital in Newport Beach. The next morning, both Dr. Coleman and Dr. Coluzzi called me personally to discuss. Based upon the pet scan and ultrasound, they do not believe that the cancer has spread. More good news! (I note that through my knee and hip surgeries, it was hard to actually see a doctor even when I had an appointment. So far, all of my doctors have been more than willing to answer my emails and calls personally and in a timely manner. Amazing.)

CONCLUSION:
1. 3 discrete hypermetabolic lesions in the right breast suspicious for multi focal malignancy. Evidence of spread to a cluster of 3 right axillary lymph nodes. No hypermetabolic lesions outside the right thorax. 

Seth also wanted me to note that the pet scan said:

FINDINGS:
Brain: Unremarkable. 

But I Feel Great

I want to take a moment to say that other than feeling a little tired, I felt great at the time that I found the lump. As I mentioned, I had started a macro diet in July and was down 20 pounds. I was starting to kick ass in CrossFit, too. And I didn't think anything of being tired because I frequently have insomnia and I also get up at 5:20 am most days to work out. I mention this to say that I was clueless that anything was wrong with me.

I set a personal record on my squat clean of 130 pounds three days after I found out I had cancer. And a week later I did my first ever real pull-up.

Diagnosis

I had my appointment to find out the results of the biopsy on Tuesday, October 18. Seth came with me. They put us in a room with a few lounge chairs and a clock that audibly made ticking noises. Seriously. We waited for 25 minutes while this clock made tick tock sounds.

Finally, a radiologist whom I had never met before and someone described as my "patient navigator" sat down with me and told me I had cancer. The doctor went through the biopsy report but I cannot remember anything that she said other than one thing. She said that the person who did the reading called her to discuss how strange my tumor was and that they couldn't figure out whether it started in my breast or was from another area of my body. Hence, the 25 minute delay. I guess this was clinically fascinating. The comment on my report says: "The tumor is poorly differentiated with a solid architecture. The cells are large with foamy or histiocytoid cytoplasm. This is an usual appearance for breast carcinoma, however it has been described. ... Although we favor that this represents a primary breast carcinoma (ductal), the possibility of metastatic tumor cannot be excluded. We considered the possibility of other carcinomas with "foamy" cytoplasm such as salivary gland acinar carcinoma. Please correlate clinically."

The patient navigator then informed me that because my cancer was serious that they had "held open" a few appointments for me. One appointment was for an MRI and the other was with a doctor. Seth grabbed my hand at this point. I knew he was trying to comfort me but I did not want to be comforted.

They ushered us out of the room. And on the way to getting my next appointments scheduled, the patient navigator asked me how I was doing. Before I could stop myself, with as much sarcasm as I could muster, I said super awesome. She apologized right away for asking. I did not mean to be nasty and I immediately felt bad for lashing out like that. Mental note to keep my sarcasm in check but warning that it is my main coping mechanism.

My next appointments were set but I was unable to keep times and dates in my head. I kept asking the scheduler to repeat things. It didn't help. I asked her to write them down, finally. MRI on Thursday, doctor the following week. The doctor squeezed me in on Friday, and that was really the first appointment where I felt like I had a clue what was going on. (Further on the "clinically fascinating" front, my doctor said that they called her to discuss my case because it was so interesting and she decided that it made no sense to make me wait longer for my appointment.)

Calling my family and friends was awful. Seth told me that I couldn't do it via group text message, though. I had a few beers and then started dialing. Having five siblings is daunting at a time like this.

I was so clueless that I had no idea of the specialty area of the doctor I would see. My doctor (who turned out to be my surgeon) is Colleen Coleman of Hoag Memorial Hospital. She sat me down with the reports and helped me make sense of them. And then she mapped out a game plan for my treatment. It was such a relief to start to figure this stuff out.

Diagnosis:
Stage 3a, grade 3, triple negative breast cancer. (Triple negative means that there are no Estrogen, Progesterone or HER2 receptors.) There are likely three tumors in my right breast. Total volume of involvement is 10.4 cm AP x 6 cm TR x 6.8 cm SI. (If you can believe this, the one I felt was the smallest one.)  This is really aggressive cancer. SBR score of 9/9. Cancer has metastasized to three right axillary lymph nodes.

Game plan:
- Pet scan/additional testing
- Chemo
- Genetic Testing
- Mastectomy and lymph node removal (possibly Sentinel Lymph Node Biopsy)
- Radiation

Tests, tests, and more tests

I had the mammogram on October 11. After the mammogram, I had an ultrasound. I had to wait a long time for the radiologist to come and talk to me after the tests and for her to do her own ultrasound. I think I laid on that ultrasound table for an hour waiting. They gave me an extra blanket since it is so cold in there.

The radiologist focused on my left breast and then said that she didn't think that whatever she was looking at on my left side was cancer. But then sort of matter-of-fact, as an after thought said, well, you have to get a biopsy. You have large lumps on your right side and your lymph nodes are very suspicious. And then she just looked at me and said, do you have any questions for me? And after each one she would repeat, do you have any other questions for me? It was so odd. The tech had made a reference to the radiologist taking a long time because she was "getting yelled at" by a surgeon. She looked like she had been yelled at. I wanted to give her a hug.

Before leaving, I scheduled my biopsy for Friday, October 14. The next morning when I woke up, I had a voicemail from Dr. Ahmed. She said that she received my mammogram results and that she was glad that I had scheduled the biopsy and to call if I wanted to talk. This seemed odd to me until I was at work and able to access my chart. I had no idea what this meant but I knew that it could't be good. "ACR BI-RADS Category 5 - Highly Suggestive of Malignancy" I showed Seth when I got home from work and he said that it was probably just a category so that insurance would cover it. No, it means that there is about a 90% chance that it is cancer. Six means it definitely is cancer. Google is not your friend when it comes to this stuff.

So, I waited for a painful test to confirm that I had cancer. Tick tock. Tick tock. I would be lucky in those days if I slept from about 9-3 am. Some days it was about 9-1 am. A biopsy is about as pleasant as you would imagine. First I was injected twice with lidocaine--one shot close to the surface and then one shot that goes much deeper. Then I had a core needle biopsy. (They don't let you see the needle. They make you turn away and then cover the area with a sheet so you can't see it go in. I suspect it is better this way.) Then they injected me with markers so they could determine where the sample had come from. These stay inside you unless they get removed during a lumpectomy or mastectomy. They did this in my lymph node and then my breast. Both on my right side. They didn't test my left because they said that they didn't like to do both sides at the same time. 

It takes two business days to get the results. Since my biopsy was on a Friday, I had to wait until Tuesday. 

I couldn't take any ibuprofen in the days leading up to the biopsy so when I got home, I drank whiskey and took ibuprofen. And waited. Oh, and I started to panic.

Something Might Be Wrong

I do not recall the exact date now, but sometime in September I felt a lump in the bottom of my right breast. I was getting out of the shower and drying off and I felt something that I had never felt before when I was toweling off.  I asked Seth if he could feel it too. He said yes. If you Google breast lumps, every site spends a lot of time telling you that it almost certainly is not cancer. So, I didn't think that it was. I made a mental note to finally get in to see a doctor for an annual exam. But, I had convinced myself that I was probably starting menopause early (or it was from stress--no, really, that's what I was thinking) and that this was not cancer. Plus, I was following a "macro counting" diet and had lost almost 20 pounds at that point and thought maybe I could just feel the lump now because I had lost weight.

About a week after this, I started to feel a lump under my right arm pit. At first it was soft and moved around and then it seemed to go away. A few days later, it was back as a more firm lump. Seth encouraged me to make that appointment.

I think that I still dragged my feet a bit but I finally went onto my Company's "Find a Doctor" website and started looking for a doctor. We moved to California a little less than a year ago at that point and I hadn't been sick at all so I hadn't needed to find one. At first, I couldn't decide if I needed a family care doctor or an OBGYN. I spent some time trying to figure that out and then I finally called a clinic from the list. I asked for a "well-woman" exam and was informed that I needed to first schedule an "intro" appointment where I would establish a relationship with a physician. After that I could make a well-woman appointment. I had to wait about a week for the intro appointment.

That appointment was on October 5. When the nurse asked why I was there, I said to establish the relationship but also because I found a lump. I have to credit my doctor, Dr. Nazli Ahmed, and the nurse, who both took the lump that I had found seriously. They did a breast exam at this appointment and did not make me come back for a well woman exam in order to get one. Everyone tells you it is probably nothing but it should be checked out. But I could see it in their faces. I remember texting Seth during this appointment, saying that they could feel the lump, too, and that they were taking it seriously. I said that I felt like I was in good hands. Since I have chronic rhinitis, I kept blowing my nose. The nurse thought I was crying and told me to not worry, until there was something to worry about.

I was given a list of providers then so that I could get a mammogram and diagnostic ultrasound. When I called to make an appointment, they said it was imperative that I find any old mammograms that I had. For reasons that now seem unbelievably stupid and naive, I had had just one previous mammogram even though I am 43 years old and my Mom had breast cancer. It was in 2007.

After my Mom had breast cancer, I wanted to get a mammogram. I checked with my insurance company and they said that because I was high risk, I could have one. And then they denied my claim. They refused to stand by what the person on the phone had told me. (Just so you know, even if they tell you the wrong thing, they don't have to stand behind their word.) I believe that I got it paid for only after my boss and HR department got involved. The doctor told me my breasts were really dense and the mammogram was hard to read. It took a lot of time and effort to get it and get it paid for and then they said that it was basically useless. So I basically thought, screw it, I won't get another until I turn 40. But then I got busy ...