Sunday, September 9, 2012

Radiation is DONE!

Well not quite....but, tomorrow is my last day of radiation.

My skin is darker in the area that was radiated, but it's not too noticeable just looks a sunburned. Christian even asked where I got my suntan....I did not experience any pain, exhaustion, horrible skin side effects, etc.. Dr Altemus is quite pleased with the result. I saw her on Friday to explain the skin will begin to peel in brown layers, but it should look pretty much the same once I "shed".  Sometimes, the nipple will be paler than the other nipple due to excess exposure. I explained that I really don't care. As long as I am cancer free then I am fine with a pale nipple :O

I will follow-up with her in one month and then 6 months to examine my breast to be sure all is healing nicely.  Sometimes, the radiation can make the breast shrink up a little and if this is a concern then I can have my other breast lifted. I noticed they are a little lopsided, but not enough to bother me; However, we will soon see the final results once I have healed.

This week, I will make my appointment with Dr Heyer and Dr Chiantella for a follow-up. Dr Heyer and I will discuss next steps - just watch me or a low dose of chemo since I don't have a maintenance drug.  I am the one who pushed for a low dose of chemo, only because the thought of the cancer returning scares me. However, he told me pretty much to simmer down. He wanted to see what my pathology results were (negative of cancer cells) and how I did in radiation.  I am terrified, like always, of this appointment, but I think I will always be terrified of any oncology visit. I have pondered a lot over these 6 weeks about life and cancer.

Cancer certainly annihilated every bit of me - more emotionally than physically. I have a different perspective in life and have changed the way I live and love. I take nothing for granted. I get up every day and thank God for my blessed life and will not take life or the people in my life for granted. My inner being is the same as I don't think I would have faired as easily as I did if I wasn't stubborn and tough. I won't change who I am because that is who got me through this journey, but I will change my perception of life. Make sense? A good friend of mine, also a cancer survivor, told me "Respect the Beast". I couldn't say it any simpler. People  say - You kicked cancer's ass. You are a rock star. I smile and say "Yep", but they ask why I don't see excited about it. Well, by no means am I not ecstatic about beating cancer, but I will not gloat. I have asked myself this many times, why won't I allow myself to scream at the top of my lungs, "F&*! you cancer" while I dance in circles waving my middle fingers...It's because of two things. 1) I am terrified of cancer and always will be. 2) I am not a showoff. My dad always told me and just told me the other week when we were talking about my Bucket List, "Barbie, I am very proud of you. You have worked very hard for everything you have and earned, but never brag. Remember who you are and where you came from". My Dad instilled this early in my life and continues to do so. Sometimes, we all need a reminder on how precious life really is. Either it be a gentle reminder or a hardcore reminder - Remember tomorrow is never promised.

Please keep me and my family in your prayers and I will keep everyone posted!

Tuesday, July 31, 2012

Radiation

Radiation is underway and so far so good. Today was my fourth radiation treatment. I will have six weeks total which is approximately 31 rounds with the last four to five rounds being more localized. I am lucky to have Dr. Rosemary Altemus as my radiation oncologist. She is absolutely amazing. Full of energy and a serious wealth of knowledge. I absolutely adore her and the staff. Prior to my first treatment, I had to be scanned, so they can "map" the area.  After it was all said and done with it, I looked like a treasure map. They had to take measurements and align the machines. Honestly, this machine is something out of a movie. I feel like an experiement while this robot hovers over me clicking and shooting a laser at me. A typical day consists of the following:

I scan my id and wait until I am called back. I undress from the top up and then go to another area. I scan my id and tell the technician my name and birthdate. I go into a room (It's more like an enormous vault)which only consists of this gigantic machine. I lay down on a steel bed and adjust my head on the personal mold which helps the technicians align my body to the machine. One technician yells out some numbers while another confirms and provides more data via a speaker. The other technician comes in and they adjust my body, accordingly. Sometimes they mark me up some more and sometimes they don't.  After about 5 minutes, I am ready. They exit the "vault" and a huge steel door is automatically closed. My friend, the radiation robot (RR), goes to work. I really can't describe it, but RR reminds me of a huge face looking down and scrutinizing me. RR appears to have teeth which are obviously not teeth, but adjusts depending on the area it's radiating, so it looks like he is talking to me. When it's time for radiation, RR begins to hover over me and move to the side. Honestly, I don't watch. As soon as they close the vault door, I close my eyes, breathe, and pray. I pray to God and Blessed Mary asking they continue to heal me. Let me live, so I can see my daughter grow and grow old with Christian. Sometimes, I just repeat a word over and over again to help me maintain calmness. Words like HEAL, LIGHT. In approximately 2 minutes, it's over. I told the technician, it is amazing how something that literally takes only 2 minutes helps me in such a remarkable way, but at the same token is so bad for me.

So far, the skin in the area looks normal. I am not expected to get soreness until about week 3. Dr. Altemus speaks to me every Tuesday to take a look at the area and to talk. She states this will be cake walk compared to chemo and surgery (Under normal circumstances), but we both know, chemo and surgery thankfully was not a horrid experience, so I am crossing my fingers radiation proves to be the same. I have a little bit of a swollen area from surgery and that should go away soon. It's in the same area as my tumor and I hate the feeling of it because it's a reminder. She continually assures me it's fine and not a cancerous tumor. It is getting better with time. She mentioned that sometimes when there is a large area that it can be poked with a needle (kinda like a blister) to allow draingage. I suppose she saw my mind racing and quickly said not to try it because it can risk infection. Fine.

On another note, I already have a full head of hair! My hair is growing like wild fire. I already had to get my eyebrows waxed.  The hair is very dark, but my grey did return. Also, my cowlick returned but I am not bitching. I am happy to have hair, again :)

Thursday, July 5, 2012

Surgery Update and Pathology Results

I apologize for the very long delay in posting, but we just got our power back this morning which has been out since Friday evening.

My lumpectomy was last Thursday and I was a little sore on Thursday and Friday, but began to feel back to normal on Saturday. There still is a lot of bruising, but every day it looks better. I have my follow-up with Dr. Chiantella tomorrow. I am tickled with the surgery, and her obvious precision with the knife, as there are no physical deformities of the breast. After radiation there may be a noticeable difference as the skin surrounding the breast will more than likely tighten and raise the breast up. If this is the case, Dr. Gottlieb will perform a lift on the right breast in an attempt to match the breasts.

Now for the best news! My pathology report came back as normal, which means no residual cells detected! I will have a PET scan within the next ten days to confirm no detectable cancer and then radiation will begin the end of July. Once radiation ends, then I will meet Dr. Heyer again to discuss next steps, which will most likely be one of the following:
  1. Continue to watch (PET scans every three months)
  2. Chemo (smaller dose of one of the drugs I had before called Taxotere, a derivative of Taxol)
  3. Chemo (a different type of chemotherapy drug)

I am waiting on the Reston Radiation Oncology office to confirm my appointment. I will either see Dr. Rosemary Altemus or Dr. Jefferson E. C. Moulds. They are both booked until the end of the month, but have participated in all the discussions and board reviews, so they are well aware of my situation. My appointment should be scheduled within the next week or two.

I pray and thank God every day for this miracle.

Wednesday, June 27, 2012

Surgeon Chit Chat

Today, I had a meeting with both my breast and plastic surgeons. I would love to know what their combined IQ is - seriously. The purpose of the meeting was to get "on the same page" regarding my surgery. Really, it was them talking, me shaking my head, and suggesting I just pull down my dress so they can touch the boob in all their glory while discussing incisions, etc. ... which I did.

In any event, Dr. Chiantella confirmed that there is no scar tissue evident in my MRI, which is amazing. She will remove the tissue around the area where the tumor started ("ground zero") and send to pathology for residual cancer cell and receptor testing. If residual cells are found then the radiation will take care of it. Regardless of positive or negative residual cell results, I will have radiation as a precaution. The receptor testing was Dr. Heyer's suggestion. He wants to know if there are positive receptors for maintenance drug purposes, since I currently don't have a maintenance drug to take with triple negative breast cancer.

Dr. Heyer and I discussed a low dosage of chemotherapy post radiation, which I am not opposed to. I can't recall if I discussed this on my blog or not, but he was thinking of giving me just one drug, Taxotere and a lower dosage than previously administered. My 18-week chemotherapy cocktail consisted of Taxotere and Carboplatin every three weeks. For maintenance purposes, I would get only Taxotere once a week for three weeks then one week off. The administering of Taxotere is not limited as in some other chemotherapy drugs. This means, you can only get so much of a drug and then need to start on something else, because your body becomes immune to it. As far as side effects, the biggest complaint is discolored nails and, of course, mental and psychological wear. Fatigue is hard to gauge. Of course, everyone is different but he said it's mostly your mind set. You just need to be positive and have a good mindset. Now, chemo maintenance is not a definite. He wants to know the MRI and pathology results first before making a decision. So, at this point the MRI results are outstanding and now praying for a good pathology report.

Now, the discussion today focused on what exactly they are going to do and if I would need some type of plastic surgery. They expect the removal of tissue to be small, so it may not have a significant scar where I would need plastic surgery. This all depends on where Dr. Chiantella needs to cut, how much, and if the area where the tissue is removed heals correctly. A breast indention is possible. If this happens then it would be in the future that I would have fat from another part of my body removed and placed on the indention. Also, I may need a lift on the right breast since once a breast is subject to radiation it usually tightens and draws up. So, for purely cosmetic and symmetrical purposes, they will lift and maybe minimize the right breast. Again, this is a year or so down the road.

Tomorrow at 9:30 a.m. I will have a wire inserted in the breast which will help guide the surgeon to "ground zero" where she will just carve out a piece of the surrounding tissue. She is going to feel my lymph nodes for sizing. My tumor began in the back on the chest wall, so if you are looking directly at me then to the side of my aureola all the way back then that is the starting point of all this. As you can imagine, the tumor was big since I could see it bulging from the top of my breast. Once that procedure is done, they escort me to the outpatient surgical center where I will get prepped for surgery. They will draw a bunch of lines on me (I really didn't understand all that talk, so I sat there and just shook my head while remaining topless and listened to them). I do know that sometimes what's inside could be different then what shows on the MRI, so that will be indicative of how much she removes. I will be in recovery for a couple hours and then go home.

I apologized in advance for what I say or do since I will be given some crazy drugs. It appears I am pretty funny when I am high since during my mediport surgery I put on quite a show for Kwiatek and Amy which I remember none of. I talked about Michael Jackson's milk. I do recall waking up and asking them "When are we getting this show on the road, people?" I was oblivious because the "show" already took place. I remember nothing else. Dr. Gottlieb assured me that anything I say or do will be kept a secret ;)

Post surgery, I have four weeks to heal then radiation begins. I have no idea how long radiation will last, but will know in the next few weeks. Probably six weeks, every day.

So ... keep me in your prayers and either myself or Kwiatek will keep everyone updated.

Lots of Love and Light,

Jenn


Monday, June 25, 2012

MRI Results...

I had my MRI this am and everything went off without a hitch, except for my "deep breathing" during the scan which caused a little delay (Note - don't deep breathe during the scan because the technician will think you are extremely fatigued and then you will have to do the whole sequence over - ooppss). I received 3 cds' and a promise from the technician that I would receive a call within the next 24-48 hours when my report is ready. I explained my surgery was Thursday, so my Drs' were quite anxious to get the results (ok.ok. I was probably just as anxious if not moreso than the Drs'.) The tech explained Dr Chiantella is usually hard on them and they will expedite the review and if it's not quick enough then she, Dr Chiantella, will access the system herself (I knew I loved this woman).

I received a call about 4:15.

Chiantella: Jennifer, your results are negative
Jennifer: What do you mean negative? Oh crap, did I mess up the scans from my deep breathing?
Chiantella: ummm...noooo....It's negative. Normal.
Jennifer: Really? Like Normal?
Chiantella: Well, I haven't seen them yet and am anxious to see this myself, but your left breast is completely normal.
Jennifer: What about my lymph nodes?
Chiantella: Normal, too.
Jennifer: Wow..I don't know what to say
Chaintella: How about ecstatically happy because I am ecstatically happy for you.
Jennifer: Oh I am ecstatically happy, don't get me wrong!
Chiantella: (laughing) Jennifer, you really kicked some cancer butt
Jennifer: I did, didn't I?
Chiantella: So, we are good to go with the lumpectomy followed by radiation. The only glitch which isn't a glitch is that I need the radiologist to insert a wire into your breast that will help me navigate to the tissue surrounding your marker when I do the lumpectomy. I hope to have an answer by tomorrow when you can be scheduled, but your surgery is still on for Thursday as of right now. In the future, if the cancer would return to the breast which I don't foresee this happening then we will do extensive surgery, but right now this is all you need.
Jennifer: Ok. Sounds good. Well what about antibiotics..special soap?
Chiantella: Nothing. You don't have to do any of that. You will be in the recovery room for about 2 hours after surgery and then you can go home.
Jennifer: Wow. Ok...Are you sure?
Chiantella: Yep. Positive.

This was the jist of our conversation. I know..it's crazy. I am sooo thankful, blessed, grateful. I can go on and on and on. It all seems so unreal.

I will wait to hear from Dr Chiantella and crossing my fingers the surgery will be set for Thursday. I will have  radiation 4 weeks from Thursday. Right now, It's set for 6 weeks but I have yet to speak to the radiation oncologist (I actually have not met either, but both have already been studying my case). Dr Heyer mentioned a PET before radiation began, as well.

I will continue to keep everyone updated on surgery. I thank each and every one of you for the continued thoughts and prayers. Miracles do happen, I just never imagined it could happen to me.

God Bless.


Sunday, June 24, 2012

MRI Scheduled

Hi Everyone,

A quick update - my MRI is scheduled for tomorrow morning. Dr Chinatella ordered the MRI to confirm if she can do a lumpectomy based on my tissue and to take a look at my lymph nodes.  I would imagine she will review the images asap since my surgery is scheduled for Thursday unless they need to postpone...I will keep everyone updated. Please keep praying.

Wednesday, June 20, 2012

The Decision

The past few weeks I have had a heavy heart and mind as I struggled to make a decision - unilateral or bilateral mastectomy. Normally, it's not difficult for me to make a decision, but I struggled and struggled...I prayed to God that he would give me an answer, give me a sign on what to do, or reassurance I will make the right decision as either option just didn't feel "right". I had decided to get a second opinion from an oncologist as I only wanted to understand better where Heyer was coming from. It is NOT that I did not trust him because I do, but I just simply needed more reassurance. I have connections with Dr. Sandy Swain, but she was unavailable to talk to me as she is traveling the world for her new position. I was referred to another office. I received a call quickly, but from a very rude woman.  The conversation pretty much went like this:

Lady - "Can I speak to Jennifer Campbell this is __ calling from __ office"
Me - "This is she"
Lady - "First of all, what insurance do you have?"
Me - "Blue Cross Blue Shield"
Lady - "Second of all, we do not make an appointment without having your records on file."
Me - "Well, I can have my records within in a few days. Can I please make an appointment as my surgery is the 28th"
Lady - "NO, absolutely not"
Me - "Well, how long can I get an appointment once you receive my records?"
Lady - "It depends on when I receive your records"
Me - "Ok. Well, what if you get my records on Monday. How soon?"
Lady - "We are looking at the end of June"
Me - "Seriously? That doesn't really help me"
Lady - "Well, that is our procedure"

I just pretty much hang up.

I receive a call this Monday from the surgeons office asking where I need my records sent and I explained that I can't get an appointment. I tried to ask the girl if it's possible Dr Chiantella can speak to a fellow oncologist about my situation and get his/her opinion. The girl could not understand what I was trying to ask...She asks me to hold on and then then Dr Chiantella gets on the phone. I quickly asked her if it's possible and she said - it's a good idea but she can get me into another office. I thanked her and immediately called her referral and could not get an appointment until next Wednesday (day before my surgery). On Tuesday morning, I receive a call from Dr Chiantella asking if my ears were burning. I explained no because in a half hour I am scheduled to see Dr Heyer and am focused on getting through that appointment. She proceeded to tell me that she had a Breast Board Meeting that morning with the following individuals (I think I have to the ratio correct):


2 Oncologists (Not Heyer)
3 Radiation Oncologists
1 Radiologist
3 Breast Surgeons
2 Pathologists
1 Plastic Surgeon

She brought up my situation and said it was "A VERY lively discussion, but they ALL came to a consensus. Drumroll please....

Lumpectomy with Radiation

I know...I know...I know...I was like - wtf. Are you serious? However, believe it or not I got a sense of peace when she told me. I really can't explain it, but I decided to keep quiet and hear her out.

A lumpectomy with radiation has pretty much the same statistical reoccurance rate as a unilateral mastectomy, but a lot less invasive, risks, and recovery. According to Dr Chiantella, they are evolutionizing this treatment plan because there is none set in place but to feel safe knowing there was much thought put into this decision factored by very brilliant doctors specializing in all fields related to my case. They will not remove my lymph nodes since radiation will kill any residual cancer cells, but they will remove and test my breast tissue for residual cancer cells. First, I need a MRI so she can study my breast and analyze my tissue, margins, and lymph nodes.  Hopefully, the MRI will reflect what she "wants" to see and there would be no issues in proceeding with this plan. I simply said "ok". I think this shocked her and honestly it shocked me - I couldn't believe I just said "ok - sounds good". I obviously had many questions which she answered. Once we hung up she was going to call Dr Heyer to explain before my appt at 9:15.

9:15am - Well, it was actually like 9:30 because I got stuff in traffic. You have to love NOVA traffic - ugh!
Kwiatek accompanied me to my visit to take notes and more importantly catch me if I really do faint or have a class act meltdown. Dr Heyer entered the room and immediately asked if I spoke to Dr Chiantella and I said, "Yes" and asked "What do you think?". I held my breath and crossed my fingers - he agreed. I thanked the Lord above.

We had a great appointment. He pretty much apologized for the scaring the living crap out of me a few weeks ago because that was not his intention - it was supposed to be a good appointment, but he knew it was not going so well by my reaction (I'm really not sure what gave it away).

Anyhow, Kwiatek and I bombarded him with questions and he answered every single one of them without hesitation. I explained my uneasiness about not removing the other breast and he explained -

1) Removing the other breast does not increase life span
2) It's usually an emotional decision than a medical decision because the woman just wants it to be done with and behind her
3) Cosmetic

My risk of developing cancer in the other breast is low, but he told me since I will be monitered very closely that if something did pop up then it can be taken care of quickly. Ok - well that makes sense...never thought about that.

He emphasized that his job is to think of the worst..not saying it is going to happen but he has to think that way. I truly understand this reasoning, but it still doesn't make it any easier to hear it.

I brought up the idea of low dosage chemotherapy and told him I will do it. He replied that he didn't even confirm I needed it. I told him it's ok - just give it to me. I would feel better. He didn't agree. What he means by low dosage of chemotherapy is this..

When someone receives chemo for treatment then usually it's more than one type of chemotherapy. For example, I had taxotere and carboplatin. He was thinking that it would be wise and the right choice to give me taxotere as a maintenance drug. It would be weekly for 3 weeks and then 1 week off. I ask - what are the side effects he briefly spoke about. He said with taxotere it's primarily ugly nails. Maybe fatigue but that is hard to gauge. It does not affect my hair follicles, so I will still have hair.  Really the issue is it wears people down - mentally. I ask how will he ever know if I am in remission and he said that I am in remission, now and it very well could stay like this but again - he nor anyone else could say for certain. He told me that we aren't at the point yet to discuss a low dosage of chemo because he wants to know my MRI results and then pathology report because all this will determine next steps.

We left this time laughing - I apologized for overreacting, but I was a woman and it's expected we get all emotional. He should understand. He agreed and said men are so much easier to deal with because they just nod their head and pretty much agree with anything.

At this point, I am waiting on my MRI to be scheduled. Dr Chiantella needs to speak to my insurance company. Hopefully, it's this week to allow her time to review and analyze before surgery next week. I did have Laurie, breast care nurse navigator, from the hospital call me on Tuesday to just talk and let me know she was in the meeting that morning to which she said was one of the more interesting meetings ever. I should be at ease knowing all agreed and had my best interest at heart. She said a lumpectomy doesn't require an overnight stay and a lot of people do great the day after. I would probably only have 1 - 2 weeks recovery time. I admittedly was looking forward to 6 weeks off from work only because I had a lot planned during my down time, but hell - I am NOT complaining.

In summary, I'm assuming my intuition was leading me down the right path all along. I was struggling with a decision because maybe I knew or God was telling me there is a better plan. If I weren't persistent and stubborn then I would still be making myself sick with worry and undecided.

I'll keep everyone updated :)