Saturday, December 1st, Meeting with Becky, Night out!...Oncology team meeting

I had been getting TONS of posts on facebook after I "came out" with the news about my cancer. That part was awesome. I needed the support at that time, and really appreciated the special messages sent privately too. I have since gotten  flowers hand delivered (thanks Lisa!), couple of care packages in the mail (A beautiful framed pic of my girlies and me from the pink party this year and a book from Jamie <3, a pink scarf from Dana and Scott), A gift certificate for a Reiki healing session from my friend Patty, and cards from friends with messages of support too. My friends Suzy and Joanie have brought over food for my family for those days that are crazy busy with Dr. appts. Friends Pat and Rachelle and Lissa have helped watch the kids a couple of times as well. I don't know if I could have gotten through this past week without all of my friends. I had one facebook friend send me a special message after she read my "cancer coming out" post. That friend was Becky. I actually did not know Becky all that well. I had met her through the "Pink Party" when I had volunteered to decorate the tables for the silent auction last year. We had exchanged a few messages back and forth as well. You see, as I was setting up the tables for the silent auction, I noticed a beautiful wind chime up for auction. From what I remember, I think it was made out of drift wood or something like that and was very "shabby chic", it was of course, mostly pink and decorated with all kinds of costume jewelry (from women who had previously had breast cancer, including Becky's Mom - I thought it was so meaningful too!). It was gorgeous! I really intended to go to the auction that night and place a bid on it, I loved it that much. Unfortunately, I mixed up the time that the auction ended, and I wound up there a 1/2 hour too late. So, I had sent Becky a message asking if she knew who made the wind chime, and how much it ended up going for at the auction. It turns out it was her neighbor that made it, and she invited me over to see some others that she had made. I never ended up following up with Becky after that (because I really wanted that particular wind chime), and have thought about that wind chime from time to time since then. Strange really, that I WANTED that wind chime so much...now that I think about it...

For those that are not local, the Pink party is a WONDERFUL yearly "party", it's been happening since 2009. It is a way to raise funds for the fight against breast cancer, gather locally, shop and support each other, and wear pink! More info here: http://www.howellspinkparty.com/ I look forward to the pink party every year, and so do my friends. I enjoy any party where playing dress up is not only expected, but going "big" is highly encouraged. If you have seen any of my outfits from the pink party in years past, you understand. ;)  A side note...I find it so ironic now how festive I felt the need to be at the pink party, now that it means so much more to me than a good excuse to dress crazy and hang with my friends (while supporting a good cause). I have been asked by at least one person EVERY year if I was a "survivor". You know, I actually felt kind of guilty being so "festive", and having to admit "ahem...no, not a survivor...I just like playing dress up". Well...the pink party is obviously going to mean so much more to me next year - so...Pink Party...WATCH OUT. :)

Pink Party 2009 - workin' the legwarmers.

 

2010 - that's me in the middle

2011 - me in the pigtails (we made the paper!)

2012 with my pink fro & my girlies (someone get those kids some sunglasses!)

 

OK, back to Becky. :) She sent me a private message, as she has been a breast cancer survivor of 11 years! She gave me lots of advice on how to get started learning more info, and dealing with the news. She told me (and I quote:)

"Step 1: Go to the bookstore and buy Dr. Susan Love's Breast Book. I have met her on several occasions and she is amazing. She recently started treatment for another type of cancer but is doing well.
This book will tell you every detail of what to expect at a very clinical level.
Step 2: call me or I can stop by your house. I am not a nurse or a doctor but I can share a great deal of information with you of many things to expect in the future. Also I will help you with your list of "things to ask the doctor."
If at all possible it would be good for us to talk with your husband there too. He has to learn as much about this as you do. He will retain information differently and will have different questions. *(then she named all of the specific times she was available to meet that day or the next).*

Step 3: you will hear many other stories about everyone else's cancer. Pay attention to the good and ignore the bad. :) It is better for you in the long run.

Step 4: you will hear of all the "cures" for cancer that are out there from many people. I have a naturopath and a holistic MD that I use. I will give you my opinion of alternative medicine. Much of it is very good but you have to be careful.

Last but not least: I noticed your remark on your post that "you know you are going to be okay." That is exactly how I felt!
I also felt that there might be a second time. But I have made it 11 years now without that second diagnosis! I thank God for that. Why do I think of a 2nd diagnosis? Mostly because I was 37 the first time and if I live to be 80 I might have to deal with it again! LOL
We all have gut feelings and that is when I really put my faith in God. Only he knows of our future and the challenges we will face along the way.

I will be praying for you and I know you will be just fine. Stay positive and surround yourself with love and wonderful people who encourage you, it makes a difference.

Becky's advice was wonderful. And I decided to take her up on her offer to meet. She came over that day, and talked with me, my husband and my Dad. That meant so much to me (and to them). Hearing her story, and knowing she came out of it OK was really reassuring to my family. She answered all of their questions, and was wonderful. Becky, if you are reading this - again, Thank you.

Saturday - December 1st - Girls Night Out!

Some of my friends had decided that I needed to get out and have some fun, and pretty much told me that was what I was doing. This was good, because if they didn't, I probably would have been at home, "licking my wounds"(so to speak) and I didn't want to do that. When they asked me what I wanted to do, I said that I wanted them to "get me good and drunk". And they accepted the challenge. So, we went out, had some drinks and dinner. We talked, we laughed, we cried a bit too. It was all good. I am so lucky to have the friends that I do. LOVE YOU GUYS!!

Sunday - Visitations...

Since posting the news about the cancer, I have gotten quite a few phone calls, messages and people stopping by (what I like to call "paying their respects" :) ) from people expressing their sorrow about the diagnosis, telling me that I will win this battle, etc. It is a strange place to be in, when you know you could quite possible be fighting for your life. Yeah, yeah, yeah...I need to stay positive and all that jazz. But I am also a realist. I do believe that I will get through this. Not just get through this - kick the ever loving shit out of this. But still, it is normal for me to also see the weight of a diagnosis like breast cancer. Some people do not make it. I know this, and there is not one day that has gone by that I have not thought about that. That is one of the many reasons I started this blog. I want there to be a memoir of my experience, "just in case". I hope that someday I will be able to look back on this journey, this year-long journey and say: "Wow, I didn't remember all of that...that sucked, but look at where I am now. I am on the other side of it, and I am OK." I am just going to say it. I also want there to be something for my girls to be able to remember their Mom. I lost my Mom at a young age (right about the same age of my now 8 yr old, as a matter of fact). So, I know what it's like to want to desperately know her. To know what she was like...did she have a good sense of humor? What was she going through when she died? So, this blog is also a way for me to express what I am going through, for THEM. I know this part may be hard to read. Believe me, it is heartbreaking for me to write. (I am crying as I type this). For those that know me and my little girls in real life, can you do me a favor? Can you make sure that someday (even if that is 50 years from now!) let them know about this blog, let them know about me? All, of me...the goofy parts, the inappropriate humor, the serious side of me too. I would be eternally grateful.

 I AM an optimist, sometimes annoyingly so, to those around me. :) I also see that others know the "weight" of this diagnosis too. I can see it in their faces, even when they are trying to be positive and uplifting. I can usually see what I call the "puppydog faces" from those that walk by me and have obviously heard THE NEWS. I do my best to put on that brave face and carry on with my day, because really, what other choice do I have? Lying on the floor in the fetal position crying all day will help no one. Although, I do allow myself time to cry too. I know that I cannot bottle up these feelings inside of me or they will come out in a way that I don't want. It's not healthy. Feeling resentment, or guilt, or pity on myself is not helpful either. So, I choose to carry on and handle each day as it comes with as much optimism as I can muster. Because, really that is all I have control over here - the rest is out of my hands.

Monday December 3rd - Oncology Team Meeting

Before we left for the "meeting", I was dealing with insurance issues that morning (GRRRRRRRRR).  It goes something like this: I was scheduled to have an appointment with a new Primary Care Physician THAT DAY (Monday) (I had scheduled it a week prior, knowing that I would need to "establish care"). I knew that I should have done this a couple months ago when I got my new insurance, but I didn't see a reason to rush it. Well, I recently figured out that in order to be seen by any specialist (and covered by insurance), my PCP has to write a referral FIRST. Because all of this CANCER STUFF happened so fast, I was probably not going to able to make it to the PCP appointment that day. I was told that I would have to DELAY seeing the oncology team another week if I did not get the referral. Which would also mean delaying my cancer treatment even further. Sooooo I was on the phone with the hospital, the insurance company and the PCP office to try and get something settled so that I did not have to delay anything. I was sick with worry about all of that nonsense, and on the verge of having a nervous breakdown that morning. They ended up taking pity on me, and we figured something out that would satisfy everyone (at least I hope so!...I have yet to get any bills from this past week, so fingers crossed!!) I asked the hospital how much $ it would be if I had to pay out of pocket for that day with the oncology team, and they couldn't tell me, but stated that it was I think $460 for EACH specialist that I saw, each person who reviewed the slides, reported on the mammogram, nurse practitioner, etc. So, yeah...it would have been a whopping bill. And, it still may be. But, I can't think about all of that right now. I have enough to worry about.

Sooooo, onto the Oncology Team Meeting. I was told that it would be an all day affair.

My hubby had planned on going to the oncology team meeting with me today, but I knew that I would be getting a TON of info (including the recommendations for treatment - which was HUGE). I decided to ask a friend to come with me to take notes for me (and record the convo.). I asked my friend Patty to come with us, and she agreed. My friend Suzy (who also works at the hospital said she would come and stop in from time to time as well), then my friend Joanie said that she really wanted to be there as well, so what the hell...let's turn this into a PARTY!! ;)

Adam (the hubby) and I arrived and they had me go in the back with a nurse who took my vitals, asked questions, etc. Then an NP (Nurse Practitioner for the surgeon that I was assigned to) came in and asked more questions, had me change into a gown and did an exam. Modesty is right out the window at this point, I am surprised I even bother wearing a shirt anymore, LOL. She informed me of the possible treatment options I would be given by the surgeon when he came to speak with me. She asked me if I had any preference for any of the surgery options, and was planning on giving me more info on them if needed. I had done some research already, so I didn't feel as if I needed any more info at this point on the surgeries. I told her that if I needed a mastectomy, then I would prefer to have the other breast taken as well. Because I am young (yes, 37 is young people! :), the risk of getting cancer again is pretty likely in my lifetime, and since the cancer started in my breast (at least I hope it is nowhere else!), I didn't want to risk it coming back in my other breast and having to go through this whole thing AGAIN. Well, of course, it COULD come back somewhere else, but I have no control over that. What I DO have control over is it coming back in my other breast - so I want that sucker GONE. That sounds so weird to say. Really, I like my boobs. (OK, now THAT sounds weird to say too - LOL). But, seriously...it is so weird to come to the point where you are kind of at peace with lopping off your breasts, right? Maybe I am in a state of denial. Maybe I am just so terrified of all of this, I want them gone, like, NOW. Get this cancer the hell off of my body!

Either way, I was leaving that decision up to my doctor as well. I didn't want to have a mastectomy if I didn't need one, but I also already knew how large of an area the cancer covered in my breast, so the likelihood of being able to save it, was pretty low, and I knew that.

After I spent time with the NP, they gave us a break for lunch and then I was corralled into a room (OK, not really corralled, but it is strange to be in a room with other newly diagnosed patients and their families - some of them had obviously been crying a lot)...we were given info on support groups, the cancer center of the hospital, a rep. from the cancer society was there, a social worker...and some folks trying to get recruits for a research study.

Then, back to the little exam room (this time with 3 of my friends and my hubby). It was nice to have my friends there to keep my mind off of things, although a few times I was worried that we may have been being a bit to rambunctious. I knew that in the rooms next to us, there were probably people being given some really awful news, and talking about serious stuff, and I didn't want to seem disrespectful to them either. If you knew my friends as well, you would know how difficult it is to reel these guys in sometimes...it might seem strange that we were carrying on like we were under the circumstances, but my friends are really having a hard time with my diagnosis as well, and humor is therapeutic for us (as inappropriate as it can seem from the outside). My husband actually said he "had a good time" at the oncology appt. and I know that was due to the silliness of my friends, and I thank them for that.

The oncology doc came in with the NP that had been in earlier. THIS was what I had been waiting for all day. He told me that I was not a candidate for a lumpectomy, and he recommended the full mastectomy. I was not surprised, but to hear him say it was not fun either. He said that he had heard that I wanted to "prophylactically" have the other breast removed as well, and I agreed. He said that he agreed with my decision. He also told me that he was still waiting on one of my lab results (the HER2 results), and this was a biggie. I was disappointed that those results were not in because they are one reason that I know whether or not I needed chemo. He stated that I "might not need chemo" unless the results are positive, or my lymph nodes were positive or if when I had my mastectomy, the tests on the tumor came back a certain way. What my friends and hubby heard though, was "you might not need chemo!" That, however is not what I heard, but I didn't want to crush their hopes, as they seemed really happy in that moment. I tried not to let what the doc said get my hopes up too, but it was difficult not to. :(  The doc also said that they would need to complete a sentinel lymph node dissection (where they take out a few lymph nodes and test to see if the cancer has spread to them...that would not be a good thing). If they are "positive", that would mean that I would also need radiation. I do NOT want radiation. First of all, I am having to have enough flipping cancer treatments already. I also know that the effects of radiation down the line could mean possibly more cancer (one of the bloody reasons I was avoiding getting the mammogram in the first place. What this also means is that if I need radiation, I would have to delay the reconstruction process and have additional surgery down the line. It also means radiation 5X a week for treatments, which would be another PITA.

Next, the plastic surgeon came in to talk about reconstruction options. He did an exam, and pinched my belly to see if I was a candidate for one of the "flap" procedures. I guess there are a couple of ways they can make breasts from other squishy parts of your body (I know that sounded really scientific and stuff!). Traditionally they can take your excess belly fat (just below the belly button) and sort of transplant that chunk of skin and make them into breasts (sounds fun, huh?). The bonus of this is that you end up with like a mini tummy tuck in the process too. The plastic surgeon grabbed my belly area to see how much he could pinch, and told me that I didn't have enough belly fat to be a candidate for this procedure - WASN'T THAT SWEET?!? Seriously, that was the first good thing I had heard in over a week, so I am holding onto that. :) Well, it wasn't necessarily good that I wasn't a "flap" candidate, just that he said I didn't have a lot of belly fat. I'll take that as a compliment. Hell, I'm easy these days.

So...best case scenario right now, that I go in for my lymph node dissection and they are negative! Which means no radiation. I go in on Wednesday Dec.12th for that. I have to be there the day before (Tuesday after work) in order to be injected with some radioactive solution so that they can find the lymph nodes better, and then they scan me a few hours later to see if the radioactive material is doing it's job. That will be a loooooong day.

Tuesday, December 4th. - Meet the PCP

Since I had a long day with the oncology team the day before, I had to change my appt for my primary care physician to the following day. So I went to work, then drove to his office immediately after. It was a LONG appt. like an hour and a half. At this point...I am getting tired of talking about myself. Really, every time I go to a new doc I have to retell the entire story over again (including family history, previous medical history, when I first felt the lump, etc.). I understand why they all need the info, but geez - enough already. He was a nice enough guy and all, I was just getting tired. Supposedly they were going to send over the referrals that I needed for additional treatment. This also included seeing a gastroenterologist on Thursday.

Thursday, December 6th - Gastroenterologist.

So, when I went to see the OB/GYN the previous week (remember the one who sent me in to the radiology appt and got this whole ball rolling?), well, she was asking me about other "issues" I might be having. They specifically ask about any abdominal problems. So, I went into the story about how I have been having "issues" with my abdominal area for a few years now. I had seen a GI doc a few years ago, and lots of treatments (CT scan, Upper GI scope, numerous kinds of meds and unnecessary antibiotics) and more than $5000 in the hole later...no better - so I stopped going to the GI doc. I didn't feel any better, I was tired of getting nowhere. I also went to see a holistic MD, and tried a bunch of things, including getting tested for food sensitivities, which made me cut out different foods from my diet for a month at a time - to no avail. So I live with the discomfort, and nausea. I am pretty good with pain, so I try not to let other people know that it is a problem, I mean - what good would that do anyways? It is something that I just figured I was going to live with, until I got this diagnosis. Now, I want to make sure the 2 issues are not related somehow.

The meeting with the GI doc was good. They were really helpful, and I felt listened to. They want to do another Upper GI (they take a camera and put in down my throat into my belly and small intestine and take little samples) to check to see what's going on. They offered to give me some anti-nausea meds...but at this point, I don't want to bother with something like that. My body is going to put through the ringer in the next few months and I don't want to add anything else on to the regimen that I don't have to. They also took some blood. The results of that came back pretty quick and it doesn't seem to me anything out of the norm range (that I could see). I have the Upper GI scheduled for this Monday (December 10th). I am not sure what time my "dissection" is scheduled for on Wednesday, I have to call them on Monday morning (before my Upper GI) to see what time my surgery is scheduled. PHEW...Hopefully I can keep all of this straight!
*Oh - I almost forgot! After the appt. with my GI doc, I had an appt. to get may hair cut! If you remember the note that my daughter wrote, you can see that my girls are having a bit of a hard time thinking of me without hair. So I contacted a friend, Maradith  - our kids go to the same school (she is a hair dresser at a salon and works out of her home as well). I asked her if she would mind giving me THE HAIRCUT when the time came. She was so wonderful and said that she would donate her time, and be honored to be the one doing the cutting. :) I had originally thought about getting a short pixie-type cut when my hair starts to thin from chemo, and then shaving it when I need to (most women end up shaving it because it starts to fall out so bad that it is EVERYWHERE...covering your pillow, in your food, etc.). Well, after reading the note from my daughter, I thought that maybe I would do a "transition haircut" to make it a little easier on my girls (instead of going from long to bald, I figured it might make it easier for them to see me with short hair for a while first). Ya know, it might make it easier on me too. I have never had short hair before, and thought of cutting it about a year ago, but the hubby put the cabbash on that idea. This was a good excuse to do it now (and this time the hubby didn't bat an eye...interesting how your priorities change. ;) The verdict -I really like it!