This was the day I felt something during my shower that I knew was new and shouldn't be there. I went to work and called Spielman Center and explained what I felt and that I wanted a mammogram. The nice gal on the phone explained that it sounded like what I really needed was a diagnostic mammogram and that would have to come from a referral from my Primary Care Physician. And since my last mammogram was on 8/22/2017, insurance would likely want me to wait until 8/23/2018 anyway. Okay......we can do this your way, so I called my Dr and took the first available appointment on 8/22. I told no one about this. I just started praying.
I saw my PCP on 8/22/2018 and she agreed, it was worth getting checked out. She thought what I was feeling was likely a fibroid cyst but nothing to mess with so she sent orders to Spielman Center for a consult with a breast specialist (a wonderful young lady named Alex), a mammogram and an ultrasound. They called me at 8:03am the very next morning (8/23) to get all these things scheduled. I would go all day Monday 8/27. I started with the specialist who agreed that I should have mammogram and ultrasound. It was when they sent me back to Alex after the ultrasound that things started getting crazy. They did see cysts in there and they saw the one I felt but there was some other "spots" in there they wanted to test. So they scheduled a biopsy for same day while I was there. This was moving quick now. I told Bill about all these appointments but still was in complete denial so I went by myself. Now I called him and told him he might want to come over, this was getting a little "weird". So lefty got a needle core biopsy. Girls get your mammograms and do your self exams. This biopsy required me to be in that "vice" for almost 45 minutes while they poked and pulled samples. That hold your breath "squeeze" is NOTHING. I got ice packs and took my wounded self home to ice the girl down. Results would come in 5-7 business days.
I stayed at the office til 5:00 on purpose in case they called me with results. So I was on I-70 in traffic when a now very familiar number came up on my phone. Before 8/27, I NEVER answered calls on my cell phone but now this number......so I answered and it was the specialist, Alex. She asked if I was in a place I could talk and I told her I was driving. She thought I might want to pull over somewhere and take some notes. Interesting, I thought. I asked if I should stop somewhere and call her back. No......she would just stay on the line with me until I could pull over. I think I stopped breathing about then......this could NOT be good. So in the parking lot of the Circle K on route 33 just off I-70, Alex told me she was sorry but the biopsy results showed I had invasive ductal carcinoma. Cancer. Most common. Most treatable. We help women fight this every day. blah blah blah. Someone would call me in the morning to schedule appointments with surgeons and radiation. I said thank you. Then when I hung up I laughed. I just thanked a woman for telling me I had cancer. The rest of the way home I cried, prayed, cried some more and pulled myself together to go to dinner with Bill and Kristine. We went to Papa Boos. I kept that to myself until Bill came to bed and I told him. We prayed some more and I told my share group and pastor and tried to sleep.
By 9am the next morning, I had appointments with oncology surgeons and plastic surgeons and radiation therapy doctors. I started with Dr Carson (oncology surgeon) on 9/6. I have Stage 1 IDC, estrogen and progesterone fed but HER2-negative. That HER thing is good. A positive result there would mean it was more aggressive. Hormone blockers can handle those other things. He thinks I am likely a lumpectomy candidate. THEN he does an exam......hmmmmm. That seems larger than they indicated on the biopsy report. Let's see if we can get you in for an MRI while you are here today. Oh boy, here we go again. And he recommends genetic testing. They will schedule that. So I leave his office and go to MRI area. This was face down in a flying superman position for about 40 minutes. I am old y'all. Having my arms over my head that long is hard. They assure me they got good images and I am off to see my plastic surgeon after lunch. I tell Dr Sisk that I am having a lumpectomy and he says he has seen the MRI and he thinks I should prepare for Dr Carson to change his recommendation to a mastectomy. My mass is probably too large to remove and save the breast. But being the nice guy that he is, he goes through all my options and says, he will probably see me again after I meet with Dr Carson again and we decide what to do. All this on 9/6.
Dr Carson's office calls.....they have met with radiologist and mass is bigger than they thought. About 4cm which now just on size alone makes this Stage II cancer but no change in prognosis or treatment plan. Because I am already small chested.....4cm is indeed too big to try to save and there are other lesions there so recommendation now is complete removal. Also saw something on the right side that they want to ultrasound and perhaps biopsy. Someone will be contacting me to schedule that as well as my genetics test due to some family history of cancers. Dr Carson's nurse Ann leaves me with a final good sign.....the MRI showed no signs of abnormalities in the lymph nodes. That would be confirmed in surgery but for now there was some good news in all this.
Back to the Spielman Center for another ultrasound and biopsy on the right side. They do the ultrasound and then tell me that I need to meet with the nurse in my surgeon's office. This is unexpected and I'm already on edge because the first time I had no idea what a biopsy felt like and this time I do so I'm STRESSED. The nurse tells me that they can't get good enough pictures with the ultrasound so they are cancelling and will get me in for an MRI guided biopsy next week. She says this is all still very normal and I should use this week to decide what treatment plan I think I want for myself depending on the outcomes of the genetics tests and the biopsies which now will both likely come back very close together. I am reminded of the devotions I read that morning. Both were about patience and waiting on God.
Dr Jeter called Monday morning, 9/17 and advised that of the 9 genes they tested, none were found to have mutations. This means that while my girls are still at a slightly elevated risk of breast cancer because I have it, there are no genetic concerns. This does not appear to be a "gift" I am destined to give them. I am over the moon happy about this.
Since my 9/11 appointment last week, I have been praying that God will help me to know how aggressive to be in my treatment options. I have been fleecing and if genetics and biopsies come back clean on the right side, I am taking this as an answer to prayer that I am to trust Him and only have a unilateral surgery. I thought I knew how these results were going to go, so I am a bit thrown for a loop now, but I keep praying and trusting. My pastor reminds me that "fear is never from God" so I will wait for the next tests on the 19th and keep praying.
Back to the MRI machine. Back to face down in the flying super woman position for about an hour. They take pictures, come up with a "plan" of how to get what they want, place the needles, send me back into the machine to take more pictures and be sure they are "in the spots" and then they draw the biopsy samples through the needles. This hurts like crazy - not going to lie. Then they compression hold me for 10 minutes to stop the bleeding and minimize bruising and send me back upstairs for a "soft mammogram" to document the clip placement. Not a fun visit, but they got what they needed and now we wait for results.
We took off for the beach house the Friday after the biopsies to make sure we have no damage from Florence. We did not and so were able to spend the weekend relaxing and enjoying the beach. I have continued to pray and asked others to join me in my need for discernment about what to do. Ann, the nurse from Dr Carson's office calls Monday before we head to the airport to tell me that there is no signs of cancer on the right side!! So now, it's time to make a decision and get things scheduled. She tells me to think about it and we will talk on Tuesday to answer any questions and discuss next steps. More praying.....but things are starting to come together and I am beginning to feel more at peace than I have since this all started.
I talked with Ann again the morning of 9/25/2018 and based on the way I have been praying and the way the results have come back I believe that we should proceed with a unilateral mastectomy. We discuss dates and additional appointments and Ann asks if I have any more questions.......I tell her I do but I bet she wouldn't be comfortable answering it. "Ann, what would YOU do, if you were me?" She doesn't hesitate. I can hear her response as clear as day in my head. "I am not a worrier. I would only remove one. There is no medical reason to remove the right side. Most women who choose both in your situation do it so they never have to worry or look over their shoulder wondering if it will be back. And that is a perfectly normal and acceptable response but it does double the surgery time, the risks and the recovery. I don't worry so I would only do the cancerous side." Instantly, I knew I had made the right decision. I have never really been a worrier either, but I was reminded "fear is never from God" and to remove the healthy right side would be a response to fear and I need to trust that God is taking care of this. I will meet with my surgeons on 10/11 for pre-op consults and blood tests and xrays and such and my surgery will take place the morning of 10/19. I also had a consult today with the radiation team. They will test lymph nodes and the "mass" after surgery. If my lymph node tests are "bad" I will need 5 weeks of daily radiation and if the "mass" scores higher than a 25 on some test, I will need chemo. I don't believe either of those will happen and will continue to pray that this surgery and hormone treatment will be the end of this for me. If you pray, I'd appreciate you praying for that as well.
Looks like it has been about 4 weeks since my last update. I saw Dr Chetta again on June 27th where he pulled another 24cc of fluid out of my breast wound and pushed some betadine back in there to try to cauterize whatever was causing the "leak". He gave me my release to go back to work on July 8th (which was this Monday) and gave us the okay to head to the beach for the fourth of July and he referred me back over to physical therapy. My return to work release required a promise by me that I would not skip any of my appointments if I went back. Deal. So.....I went back to work on Monday which was wonderful and it's quarter end so there is lots to do and it's good to feel useful again. Then today was my weekly followup with Dr Chetta and my first return to physical therapy since early May when "the hole" developed. Dr Chetta pulled ANOTHER 22cc of fluid out of the breast wound and shot some more betadine in there. We were optimistic since that was two weeks of buildup and the same as what was accumulating in just one week before that maybe with this extraction we would be ahead of it and my body would start absorbing it. Then I went of to PT.
Cari did a quick assessment and as I already knew I have lost ROM in my left arm both to the front and to the side and there is scar tissue building up from my radiation across my chest below my collarbone. I didn't know what that was but my chest area on the left side was very hard and apparently that is why. My lymphatic cords have worsened under my arm pit but thankfully are not really running down my arm at this point. And due to lack of use my shoulder is starting to develop capsulitis (frozen shoulder). But other than that, I am looking GREAT! So she did some tugging on my arm to break up the shoulder some, and then she massaged those cords (ouch) and then she started to just apply some pressure to the area above and below my missing breast. She thought this might hurt but to be honest it really felt good. And I responded almost immediately. You could feel a softening under the skin that had previously been hard. That's the good news. The bad news is that my chest scar opened up and fluid starting coming out. Poor Cari was kind of freaked out because this had never happened to her before so she went across the hall and got Dr Chetta's PA to take a look. The PA came almost immediately and said "this is actually a good thing because now we can drain that fluid out as it develops and heal this from the inside out like it should have done on it's own." Even though they had taken fluid out earlier and put that betadine in there (which is brown), that is NOT what was coming out here so we think this little unhealed cavity might be the source for all the trouble. Then they showed me how to "pack" this cavity and told me to do that once or twice a day. I almost puked when they did it so they asked if I thought Bill or the girls could do it. I thought Bill could. They said if he couldn't they would have a nurse case manager call and we would arrange for a home health nurse. I talked to Bill on the way home and he thinks he can handle it so we will try that tomorrow when it's time. He is amazing. Sooooo, we do this for a week and I see Dr. Chetta again next Thursday. #arewehavingfunyet #notyouraveragepatient #backtowork #Godsgotus #savedbygrace #survivor