Treatment 1-in the beginning

Went back to the Start Center today for my first round of treatments. Can't say I slept well last night. Very nervous not sure what to expect. The treatment room is set up very nice to try to make everybody as comfortable as possible. My chemo nurse (S) walked me through everything. She has a very bubbly personality and seems to know all of her patients by name. She helps put me at ease; and seems very confident and knowledgeable and comforting. She sits and has to push the first drug manually through my port as it has to be monitored closely for side-effects. It's a good thing she warned me that it would turn my urine bright red, immediately. That would've been a little shocking had I not expected it. 

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.

I forget to take my anti-nausea drug that night and boy do I regret it. That throws me for a loop. Don't feel too bad the next day though, i manage  to go to work. But saltines, ginger ale, and chicken noodle soup are my friends.

Hey Look It's Another Doctor's Vist

Had another visit with Dr. B today and met his nurse S, who as everyone else so far, was very nice and professional. I have no doubt that this is a good team. He says the port looks good even though it feels a bit sore still and the scar is a bit raw looking. I did find out that the treatment regiment will be a bit different than we thought. It will last eight sessions not six and consist of two different protocols. There will be four treatments of an A/C combination and four treatments of taxotere. I will be getting an EKG next week to check my heart as the Adriamycin Cytoxan can be quite toxic. Oh goodie. What is that saying about the cure being worse than the disease?

So what to expect? Fatigue, hair loss (yes all the hair), vulnerability to infection 7 to 14 days after chemo, neutropenia, tinging in the fingers and toes. And then there's the possible constipation or diarrhea, the nails that may fall off, the possibility of high fever at which point we need to go to the emergency room, and don't forget the hot flashes. Those are awesome at 40. Oh and avoid raw vegetables at restaurants since you don't know how well they've been washed, avoid sick people and crowds, and drink plenty of water to flush the system and keep your skin from drying out too much. There's also the steroids, the anti-nausea meds prior treatment, the anti-nausea meds during treatment yada yada yada. Oh so many things to keep straight.

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

Received my quilt today. It is amazing especially given the turn-around time. When I was told to build a support group I didn't ralize how every act of support is important, it matters. While I don't want anyone to feel obligated to do or say anything I must admit every act of kindess helps. There may be distance between us, but the love is no less because of it.

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.

Navigation

Had another meeting with A my nurse navigator today. Talked about a variety of issues including side effects, what's normal, what to worry about, what to do etc. Discussed nutrition and luckily coffee is still good which is a bonus for all those who have to deal with me on a regular basis. Also discussed how my tastes will change and that maybe I should stop eating my favorite foods. Just be prepared for a new normal. Watch out for dies, fragrances, and empty calories as the body will be very sensitive inside and out. I must learn to listen to my body. That will be something new. I've been good at ignoring it the last couple of years while working and going to school. Not that I was every really good at paying attention.They will also be giving me steroids which should help with the nausea. Should be interesting to see what effect those have. Yippee more drugs.  Have great hopes that I have little in the way of effects, but must be prepared for anything.

Thanks to K I was also fit for a wig today. I actually went shorter than I thought but I was worried about the heat. I'm almost used to the shorter cut now, but still miss my long hair. I know I'm going to lose my hair but I'm still hoping somehow I'll be spared. Yup still floating down that River in Egypt.

A Port in the Storm

Dad drove me to work today so that I can work part day and then go to surgery. People by now know something is going on but I still don't feel like I can announce anything yet. I'm just not there yet. Got to Baptist at 12:30 but did not go into surgery until nearly 4.  Sat around for a long time getting nervous. Just love waiting, not. At least we missed the traffic on 1604 as we didn't leave the hospital until nearly 7. It took me longer to wake up from my aenethesia, guess I was tired. 

So far I must say I am pleased with my care. The whole team seems to be knowledgable, competent, and compassionate. Gives me an interesting perspective on the dissertation work. There was good teamwork going on as the staff checked and double checked everything. It seems like Dr. R even talked about me as after surgery the anesthesiologist even mentioned he knew I was working on a dissertation. I guess it's good for them to know something about me. Feel sore a little bit of pain but mainly stuff. Drugs knocked me out for most of the night or maybeit's just their way of checking if my mind is mush.

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. 

Working the Support

As I don't know exactly what to expect moving forward I talk to my boss about how we might deal with the unknown. She's such a great support both personally and professionally. She has no qualms with me working from home when I need to. I decided I need to go talk to the associate Dean, who is above her just to make sure that everyone is comfortable with the situation. I also know that the Colonel will be a support both personally and professionally. Although I'm still not sure how to tell people. How do you start off that conversation .... 

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.

I Think I've Been Here Before

Had a second visit with Dr R the oncology surgeon today. Things are moving fast now, which is good. Patients may be a virtue, but I want a plan and I want it implemented: now. Everyone seems to agree to getting chemo done before surgery will be the way to go. Still not sure about mastectomy or lumpectomy, that decision still to come. Less than a 3 to 5% chance of needing radiation if I do a mastectomy. There's also a lot of follow-up to do if I go with lumpectomy including semi annual mammograms and MRIs. I don't know, so many decisions still to make. Final decision on radiation post-surgery will be made from pathology report after they remove and analyze lymph nodes (how many they remove again is still to be determined). Sigh

The decision is made to put in a chemotherapy port which is placed 100% under the skin on the side away from the tumor. This allows all lab work and chemo to go directly to and from the blood system without having to get my arm poked every couple of weeks. This is inserted directly into the veins in the operating room as an outpatient situation. As with everything there are risks such as blood clots and lung damage. Still it seems like the easier path so we schedule surgery for Friday.
 

Oh and happy birthday to my brother! Lots of things going on with the family. I have an Aunt looking at surgery herself and unknown chemo or radiation. My sister-in-law's mother is very sick with cancer and it looks like we will loose her. Hated making the call to them with everything else going on. She lost her sister to cancer several years ago; it just seems like the hits keep coming. As scary as what I'm facing now I must remember that this is beatable and manageable. So surgery on Friday and then schedule chemo. We  just keep moving forward one step at a time.

The Doctor Is In

Met with my oncologist today, Dr B. Boy does that feel strange to say. My oncologist. I feel very comfortable with him as he is very knowledgeable and willing to listen. MRI and pathology reports look as good as I could hope for. Nothing appears to have spread outside of the breast. It's a strange little line of calcium that is causing the nipple inversion. Doesn't hurt anything but probably takes a lumpectomy of the table. I am officially phase 2 based on size and and pathology.

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.

Going Short

This afternoon it all became seriously real. It seems strange to say that the hardest thing to deal with so far is the cutting of the hair, but it's true. I went and got nearly 11 inches cut off and donated to Locks of Love (http://www.locksoflove.org/). I figured if I was going to lose it someone else might as well benefit from it. Besides that would give me a good cover story for why I cut it. I'm still not ready to announce anything to more people than I have to, especially people at work. Not yet, but I know the time will come. I just can't see me wearing a wig, penciling in eyebrows and wearing false lashes to try to make everything look normal. I don't wear make-up now, it seems like a lot of effort to put in every morning. I can fully understand while many women do, but I know me, I'm not that motivated.

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

Had to get up and go across town for an MRI at 8:00 AM. At least traffic is light as no one else wants to be up and moving at 7:30 on a Saturday. Mom went with me for moral support. Had an interesting time just getting into the building as nothing is open that early on a Saturday. 

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.

Time to Share

So today I make my first effort to set up a support structure. I post about my cancer to my UF cohort asking for their support and help to ensure I keep on track with his silly little dissertation thing.  I hope I don't make anyone uncomfortable, but I know they're going to be an important part of this journey. When I started this doctoral program I really didn't see the purpose of a cohort, now I'm not sure I can do it without them. 

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 ....

The Support Begins

Dr R has given me and my parents a lot of information. But he takes the time to answer our questions and I feel very comfortable and confident in his knowledge and abilities. He asks if I have met my nurse navigator and when I say no pulls out his cell phone and makes a call. On the floor above is the Baptist Breast center. It is there that my nurse navigator, genetic counselor, and support groups will be. Today I meet AK my nurse navigator and KC my genetics counselor. They were both wonderful. AK went over a lot of information about what to expect, things I may want to try (cut the hair short), a grocery list, and just overall put me at ease as much as it was possible. She will be there the entire way, helping me well, navigate through the chaos. I feel like I'm back on automatic, as if it is all happening to someone else. But I know my life has just changed, the trick is to get a plan in place. I need to feel as if I have some control even if it is an illusion. She tells me it is important to have a support group, to not do this alone. I'm not sure I want tell people, certainly not ask them for help, but I know she's right. But how do I burden people with this?

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.