The anti-nausea drug was first then the two chemo drugs, then heparin to flush the port. Good thing they know what they're doing. Mom and dad want to go look at furniture while this was going on as it took several hours. Amazingly nothing was purchased. I worked on my dissertation. Or at least tried to. They got back just before I was done. My chest/shoulder where the port is still a bit sore and feels a little off. Of course that is the shoulder that I had orthopedic surgery on several years ago anyway so it's not quite normal. Hard to tell if it's an old war wound, fatigue, new damage or if my brain is just playing tricks on me. The doctor and the nurse think that it looks good and it's working well and they should know better than I do. We'll just keep moving on.
A story in two parts: 1. A journey through breast cancer, dissertation, and life. 2. A story of Castleman Disease, unemployment, and living in a COVID-19 world
Thursday, February 28, 2013
Treatment 1-in the beginning
The anti-nausea drug was first then the two chemo drugs, then heparin to flush the port. Good thing they know what they're doing. Mom and dad want to go look at furniture while this was going on as it took several hours. Amazingly nothing was purchased. I worked on my dissertation. Or at least tried to. They got back just before I was done. My chest/shoulder where the port is still a bit sore and feels a little off. Of course that is the shoulder that I had orthopedic surgery on several years ago anyway so it's not quite normal. Hard to tell if it's an old war wound, fatigue, new damage or if my brain is just playing tricks on me. The doctor and the nurse think that it looks good and it's working well and they should know better than I do. We'll just keep moving on.
Wednesday, February 27, 2013
Hey Look It's Another Doctor's Vist
Dr. B is changing his schedule and will not be working at that location on Thursdays any more, so we move the Chemo treatments to Monday as I will be seeing him before I actually get chemo treatment. It's better than having two separate appointments but yet another change. So many appointments it's overwhelming and a bit confusing, glad mom and dad are here to help me keep notes. We also went to the treatment room to see where I would be getting my chemo the next day and met my oncology nurse, S. She put me at ease with her personality, but I can't really say I'm looking forward to seeing her again.
The Warm Fuzzies
I have also decided to tell my department at work. I know me, I will not be wearing a wig in the middle of summer in Texas. Many also know something is up just because of the time I've been missing. It is also important that people understand I cannot be around them if they are sick. It seems to be insulting to keep people in the dark, but how much to share? I decide to go all in. I ask my department head to call a meeting and supportive as always she does. I let everyone know that I have been diagnosed with stage 2 breast cancer and I'm not sure what that is going to mean. Side-effects of chemo to be determined. I ask for their support and understanding, and to respect that I'm still not ready to go all out on the announcement. I'm sure people in the office will figure it out sooner or later, but right now I just don't have the energy to deal, plus I'm just not sure what to say. I guess we'll just figure it out. My new mantra: one day at a time.
Tuesday, February 26, 2013
Navigation
Friday, February 22, 2013
A Port in the Storm
I couldn't do this without mom and dad. They have been wonderful taking care of me and Mika. Mika knows something is just not right, but is enjoying the extra attention. My Aunt C (who is an amazing quilter) and uncle R are making me a quilt with fabric handed down from my late grandma. I am sure it will be wonderful and full of love.
Thursday, February 21, 2013
Working the Support
I don't even remember how the conversation started. I am overwhelmed by the support I've been shown and I'm no longer worried about what's going to happen at work. I know that they will support me the best that they can. Please don't let me curl up in a ball and shut the word out, I know if and when I need her she will be there.
Wednesday, February 20, 2013
I Think I've Been Here Before
Tuesday, February 19, 2013
The Doctor Is In
Dr B went and put all my info in a database and showed me the different treatment options and their long-term outcomes. There is no question of chemo and surgery now. I will do whatever I have to in order to ensure my best odds not just for now, but for the future. He is comfortable with chemo first so it looks like there is a plan at long last. There are some breast cancer's that do not respond to chemo, but the only way to tell is to have chemo and see what happens. It will be obvious within a few treatments if the chemo is working. One more reason to go with chemo first. Why have chemo if it isn't going to help? If thee is no change we will go straight to surgery. There is really no way to tell if you do surgery first. Now to go back to surgeon and have the chemo port put in.
Saturday, February 16, 2013
Going Short
The woman who cut my hair was great. I'm actually pretty happy with the way it looks, but it'll take some getting used to. It'll take days before I stop using too much shampoo. I think I kept my eyes closed most of the time. It just seems so final. Mom and Dad went with me for moral support. This is the closest to tears I've come since the day of my mammogram. It seems so silly to be so emotionally attached to hair, but even after the pony tail was sawed off the pile of hair was just so big as she shaped it.
I decide to put together a closed Facebook group as many of my close friends and family are scattered across the country. Again how do you send out an invitation to that group? The responses I get nearly bring me to tears (again). Cue Hallmark commercial, or maybe a Kleenex commercial. There are still many questions and the future still seems uncertain, but my support group is in place. Now to put away all those scrunchies.
Don't Even Get Saturday Off
The tech had an issue finding a vein for the die. Must have been that AMEDD training he had in the 80s. He is personable though and talks me through the whole process. I don't know who came up with the design for this contraption. Lying on your stomach, breasts hanging in down in two holes with your sternum resting on a nice cold bar and arms out over your head. This had to be designed by a man. Now just relax as you get loaded into the tube and hold still for 25 minutes. Remember your yoga breath. And then there is the saline push. Yikes, at least he warned me. Still this position makes it difficult to breathe, and even with the blanket I'm cold. Five minutes in and I am more than ready to be done with this. Time to go home and do something fun. Like finish writing a methodology chapter.
Friday, February 15, 2013
Time to Share
Next, is to call my dissertation adviser. Oh, um those first three chapters, still a work in progress, but that's not why I called. We talked about options among other things. Never really planned on graduating this Summer, but now I'm just hoping for Fall. At this point I'm not even sure what the plan is let alone how it might effect my writing, the study, the dissertation defense. I had plans this year. Nephew's graduation, cousin's wedding, and walking that stage in Gainesville. Now all that seems to be be a maybe at best.
Now for a couple more calls to some local people. Hey, don't mean to ruin your day, but I've got something I need to tell you ....
Wednesday, February 13, 2013
The Support Begins
Later we meet KC my genetics counselor. She explains how we're all mutants (not her exact words) but some of our mutations are a bit more dangerous than others. It's a pretty easy process to swish some Scope and spit. Now we just wait to hear if it's all in the genes. Part of me hopes so, even though that means my chances of recurrence are higher, at least then I would have a reason. I mean there has to be some logical reason why. It can't really just be random chance. There has to be something I did or didn't do, something I can control to ensure I never have to deal with this again. It can't possible just be so random can it?
The phone calls start when we get home. My boss had already called to check in on me, so one down, but many more to go. I think Dad has a harder time talking to people than I do. I'm still on auto-pilot. Yup, breast cancer, yup, I'm going to fight it, and yes, pray for me.
Denial is No Longer An Option
It's been hard to sit around and wait for test results. I still don't want to say anything to anyone just in case it's all a big mistake. I mean really, it has to be. Mom and Dad are still with me and will be going to all my appointments. I have also told my boss as I know her support is going to be important both personally and professionally. I tried to call my primary care doctor on Feb 12th, when the results were supposed to be in, but we kept missing each other. It may be better that I didn't hear them over the phone. I am certainly glad I didn't hear them while I was at work.
Today has been a busy day. Ended up at North Central Baptist for most of the day. So much information, glad Dad had a note pad and took good notes. Met with the oncology surgeon (Dr R), and a nurse navigator (AK), and a genetics counselor (KC). Obviously it would have been a much shorter visit had the pathology report been negative. Still it was nearly as positively negative as it could probably be. It is invasive ductal carcinoma, large but slow growing. It is rare to have it so young but we have time to form a plan of action. It's been there for a while, possibly months before I ever felt or noticed anything. He classifies it as grade 2 (out of 3) meaning that the tumor cells are moderately-differentiated. (Yup that cleared it up for me too.) The pathology report is HER2 negative, so it is not estrogen driven and that backs up the idea that its a slow grower. Since I do not know my family history it is decided that I will get the BRCA1 and BRCA2 genetic test done. The result will help determine what I decide to do surgically. There are options and decisions to make. I will have to have chemo, but do I do that before surgery or after? Lumpectomy and radiation or mastectomy and reconstruction? Oh, and do I want to freeze my eggs? Say what? Wow, now I have pretty much given up on the idea of ever having children, but the option was always there. Or so I thought. Now that one threw me a bit, but no, no egg harvest necessary. Will need to have an MRI done on both breast and lymph-nodes so we get that appointment set up for Saturday. Yup, don't even get the weekend off.
So now what. No more denial, but still in search of a plan and answers. Am leaning towards chemo first, then seeing what our options are surgically. Surgeon is good with that, but I must talk to oncologist first. Will I be able to work? Continue working on the dissertation? I knew I liked my surgeon when he said if anything had to go it should be work, don't stop the dissertation (he's also a PhD). Cancer, dissertation, work, in that order. Got it. Oh yeah, and don't get over-stressed.
Friday, February 8, 2013
Things Will Never Be The Same
Mom and Dad are staying with me. They come down regularly, but I've been a bad hostess and make them sleep on the couch (hide-a-bed). I start to wonder about giving up the exercise room and making it a guest room. Briefly. Again, it's too early to think about right?
I went into work, but had to leave early as they called to move the appointment up. I think people at work know something is up, but they're not sure what. I have never had to take so much time to deal with health issues. I am also worried about the work I'm supposed to be doing on the edits for this publication. My professor has had a death in the family, I can't ask her to take over. I'm not sure I can do it though. I've tried, but as much as I pretend my concentration is less than perfect. Oh well, one step at a time. First thing, get a needle pushed half way through my left breast.
So Mom and Dad go with me to the biopsy. Yeah for Dad, I'm pretty sure he's the only man at the breast center. I may be wrong, but I got the impression that the receptionist thought I was there to support Mom, not the other way around. The staff at the breast clinic are great. The radiologist is a bit odd, but tries to be reassuring and takes an interest in Mom's health. Dad stays in the waiting room as we talk about the procedure. Neither of them get to be with me during the biopsy, but that is probably for the best. That would have just be weird.
I would not recommend a core needle biopsy with a 20 gauge needle. It was a tad uncomfortable, but they were very good at using more local anesthesia when I noted it was a little painful. Maybe I've been working at METC too long, but I was fascinated to watch. They turned the screen so I could watch along while they did the biopsy. Somehow it was somewhat reassuring to be able to see. They talked me through everything. As strange as it sounds I was grateful. I felt slightly detached, like watching the Discovery Channel. He took six samples and put in a MammoMARK site identifier. They did one last mammogram to ensure its placement before I got to go. I don't think that my left breast will ever be the same and wonder about getting a tattoo to cover that biopsy scar.
Yes that's a bit more denial rearing its head, but I deal the only way I know how. I hate waiting. Results should be in on Tuesday, and I do not want tell anyone what is going on in the mean while. Just in case, it could all still be a mistake. However I did talk to HR as a heads up, just in case. We recently lost one of our own due to leukemia, and it is in my mind that he may have pushed himself too hard too soon. But then that was him, his situation was different. I don't even know what my situation is yet. I hate waiting. I want a plan. I can handle whatever right, but how can I handle it if I don't even know what it is?
I send my edits in to my professor and an apology. I know she is going through a hard time and I feel like I've let her down. I don't feel confident in all my edits, but I know it's not going to get better and I tell her what is going on. I shouldn't have worried. Sometimes support comes when it is most needed and in the most unexpected ways.
Wednesday, February 6, 2013
What? I don't think I heard you
Yes, everything they say about mammograms is true. Poor little breasts. I can definitely tell the left breast is more tender. I sit and wait in my stunning hospital gown as the radiologist looks at the scans and decides if he wants to do an ultrasound. Another woman is waiting and we talk. She discusses how she once had a fibrous mass and had to get an ultrasound, but it was nothing. Somehow this makes me feel better, but of course I am not her. She gets excused, they see no reason she cannot go. I start looking at the literature. Oh maybe it's a cyst? Hmm, what is this about a biopsy? Oh, man I don't want that. Finally they let me know they want to do an ultrasound. Still Dr had mentioned they probably would. This does not make me worried. At least I won't admit to it.
I try not to jump to conclusions as the ultrasound technician seems to take a very long time and does a very thorough job even looking at my lymph nodes in my arm pit. She can see something, I'm sure, but she never lets on. She is friendly and we chat about little things. Once she has left to go talk to the radiologist my mind starts working overtime. Still, I am sure it is nothing serious. I don't have time for anything serious. I have edits to a paper to make, a dissertation to write, work to get back to, and a dog that needs to be walked and fed. After all, all I do is for the happiness of the dog.
Finally got called in to see the radiologist. He had the ultrasound pictures on the screen to show me. He was very forward as he pointed out a mass in my left breast and said the word malignant. A lump about 3 1/2 cm that needed to be biopsied as soon as possible. He tried to be reassuring talking about someone else who had similar results and was doing just fine. But somehow it doesn't help. I am not her. This cannot be right. There is some mistake.
They were already booked for appointments on Friday, but would call her to see if they could get me in as the woman doing it traveled between several offices. Did I need anything? Kleenex? Had a hard time getting my clothes out of my locker. I think the expectation was that I would fall apart right there in the office. I knew if I did I would never be able to make the drive home. Put it in automatic. See if they can get me an appointment for Friday. Put my clothes on. They can't get a hold of her, they leave a message and will get back to me. If she is unavailable to add an appointment on Friday they will schedule one early next week. They will call and let me know. All I can do is walk to my car and make myself drive home.
I feed Mika and sit on the couch waiting for the phone to ring. I want to cry, I want it to be yesterday when there was nothing wrong, I want to call my mother; but I need to get this piece in place first. Do I have an appointment for Friday? The phone finally rings, the appointment is for Friday Feb 8th.
I try to call Mom, she doesn't answer. How dare she not answer? I need her. I call Dad's cell phone, but by this time all is lost. I am a crying wreck and he has no idea what I am trying to tell him. After all, why would I be calling him to tell him I have breast cancer? Finally the words get through. They are on their way. It's about an hour and a half drive from their home to mine plus time to pack. I call them back after a few minutes saying it's alright if they do not come down tonight, after all, I'll be going into work the next day, what could they do? But I did want them there for the biopsy on Friday. Do you want to be alone was the question. No, I don't want to be alone. And I wasn't. Just please, don't say anything to anyone yet. Not yet, I still have hope that it is nothing. Why worry people when it could all be a big mistake?
Tuesday, February 5, 2013
Ah it's Nothing - right?
There are moments in life that make us stop and wonder what if. They may seem little at the time, and yet somewhere in the back of our head we know we aren't paying proper attention. Several months ago I walked into the corner of a wall and thought I'd bruised my left breast. Not a big deal, I'm a klutz, I was tired. But it hurt a little too much, and why was my nipple inverted? That's just strange. While at 40 I did not believe I was invulnerable, it was still nothing to worry about. Right? It would go away. Hmm that part of my breast feels a little strange, and it's still tender weeks after, maybe it's some sort of fibrous mass. I had an annual physical coming up and if it was still an issue I would have my doctor look at it.
I took the day off of work. I had several appointments: got my eyes checked (yup still have terrible vision) and then my annual exam. Did I mention I work for the Medical Education and Training Campus at Ft Sam Houston, Texas? I’m not a doctor or medic, or clinician, but a Learning Systems Developer, trying to do my best to support the young and women in uniform who come through our school to learn skills which save lives. I am also an online a doctoral student at the University of Florida pursuing an Ed.D. in Education Technology. At this point I was trying to finish my literature review and methodology chapters for my dissertation. The sooner I could get my proposal approved and defended the sooner I could do the research and graduate. My research, which needed to tie into what I do for a living as this is a professional practice doctorate, was to be on The Future of Simulations in Medical Education and Training in Community and Technical Colleges: A Modified Delphi Study Identifying Their Instructional and Technical Feasibility. (Or at least that was the working title at this time, but more on that later.) Oh yeah, and those peer review edits came in on Feb 3rd for that paper I wrote with one of my professors. I needed to get those done so we can get that published. Honestly, at this time my energy was on other things besides my health.
My physical was nearly done, vitals all good, and did I have any concerns? Moment of truth. There was still a big part of me that said it was nothing, but I wanted her to take a look at my breast. There was something odd going on there.
It did not take her long to see and then feel there was something wrong. Yes, out loud, she said it; there is a lump in my breast. She wrote me a referral for the breast clinic upstairs to get a mammogram. They may also do an ultra sound she told me as mammograms sometimes have a hard time with more dense younger breasts. Still, it’s just a precaution. I’m sure it’s nothing.