As a consequence of trying to kill me, my boobie must die. I ended chemo Oct. 10, 2018. I had scheduled my mastectomy for November 16th. When I told my oncologist, Dr.C., (the guru of inflammatory breast cancer), he told me that was too late, and I needed to schedule it two weeks after chemo. Normally, a mastectomy is scheduled 4-6 weeks after chemo ends. He went on to say that with IBC, everything is rushed, you do things as quickly as you can and move from one treatment to the next asap. My mastectomy was moved to Oct 26th. I had mixed feeling with moving it so close, because I felt I didn’t have time to rest between. Not just physically, but emotionally. Upon thinking, logically, I am happy he wants to move quickly. Because inflammatory breast cancer is so aggressive, moving quickly will reduce the chances of it growing between treatments. It will keep it weak.
My surgery day. I felt strangely at peace. I was comfortable with everything that was going to happen. My husband drove me to Northwestern, and my parents followed shortly after. After meeting with the doctors, I was taken back to the surgical area. I only remember them putting a mask on me.
I awoke in agony. I felt pain only and couldn’t even think straight. I had such intense pain in my armpit I couldn’t breath. I cried and took short breaths. I felt nauseas from the pain. I vomited. Oh my god, I cannot deal with this pain. I was in the post op area. The staff told me over and over that they are sorry, they are giving me something and it will kick in soon. I cry and beg them to please help me with the pain. They talk amongst themselves in the hall. They’ve already tried this and that. Why isn’t it working? I start panicking, oh my gosh, the pain isn’t even decreasing? What if they can’t lessen the pain?! I start breathing heavy but short breaths and crying. I am having another panic attack. Here comes the neausea again. I puke. They assure me that they will decrease my pain. I beg them to put me to sleep again. They said they can’t. I continue to cry and continue to attempt to breath properly through the sharp intense continuous pain, it never gave up at all. There wasn’t waves of pain, it just stayed the same searing intense sharp hot pain. I remember having panic attacks and throwing up at least four times and that they placed a cold towel on my forehead. That just annoyed me because it didn’t address my pain. I know they just tried to help. They couldn’t figure out why all the pain meds weren’t working and I’m sure it was an attempt to give me another sensation to concentrate on. At one point I had asked if they couldn’t just give me some morphine, and someone replied that they had given me medications much stronger than morphine and it wasn’t helping. Finally, they decided that I needed a nerve block. They had to get my husband to approve this because I was so drugged up, my consent was compromised. This meant that my husband had to come back to where I was and sign the papers. I didn’t want him to see me like I was because I knew he would be so worried. When he came back, I tried very hard to be strong. I remember at one point I couldn’t take it and bawled again. But I quickly tried to recover for him. The next thing I remember, they were doing the nerve block and saying it would hurt when they put the needle in, I thought in my head that they were crazy if they think a needle would compare to the pain I was feeling. And I was right, I felt nothing when they put the needle in. I remember them asking immediately if I felt less pain. I couldn’t talk thorough this whole ordeal because the pain took my breath away. So, getting words out took time. I eventually was able to say that it did help. It wasn’t instantaneous, it took a few minutes, after the nerve block in my armpit, it felt so much better. Then the drugs started working on the other painful areas, my chest and my arm. I managed my pain with dilauded and oxycodone the duration of my hospital stay.
I must admit that my stay was a bit hazy. I remember a few things though, I recall that when my surgeon’s fellow came in, he was very nice but when he changed my bandages it hurt so badly that it would take my breath away and put me in tears all over again. My husband, fighting against his instincts to protect me and stop someone from hurting me, had a tough time with this ritual. At one point, he yelled at the Dr. and said it was enough! She’s had enough! The Dr. had to poke me all over the surgical area because he was tying to determine if the pooling of blood would stop filling or if it would need to be surgically drained. So, yes, he had to poke my very deeply painful chest and armpit areas. You, see, the nerve block had an interaction with my blood thinner. I was taking a blood thinner for the blood clot I developed in my internal jugular in September. I had stopped taking the blood thinner 24 hours ahead of time, but I guess there was enough of it in my body to cause the interaction. In hindsight, i don’t know how I or my Dr. could have avoided this. It was just a fluke, i think. The pain made me wail and ugly cry. But, I knew it needed to be done. I didnt pull back from the Dr’s pokes. If i did, he would have asked me to hold still anyways. I had to pull more courage out of myself. Something that seemed to be easier to reach for throughout this journey.
I remember bits and pieces more. It truly is hazy. Good drugs, thats all i have to say. I remember that I had this constant idea that i needed to get moving. Go for walks. I did that pretty well, i think. They kept me at the hospital longer than normal because of the nerve block . They said the nerve block would last 24 hours and then it would wear off. We all agreed that it would be better if the pain came back, that I was in the hospital, not at home. They then allowed me to stay yet another day because i was still in quite a bit of pain and I knew I couldn’t take Dulaudid at home, only oxy.
I went home on Sunday, two days after my mastectomy. It was a long drive and I remember being very happy I had gotten a long pillow designed for after a mastectomy to protect your armpit area from your seatbelt and not hit your surgical area as well. That was a good find because boy did it help. I arrived home and went straight to bed. I had switched sides with my husband so my good arm was on the outer side of the bed, next to the nightstand. I had read up on that trick ahead of time, so all was arranged. I had my pillows at an incline and my mastectomy arm raised . I had button down shirts with clothes pins handy to hold my drain tubes. Zip up hoodies or a nice robe were essential too.
My chest looked like it was half a boob. It was not flat like I expected. Most of that was the hematoma the size of the entire surgical area. The surgical area started at the middle of my chest all the way to my armpit and goes up slightly towards it. The incision is about 8 inches. It was all raised and I had two drain tubes coming out of two holes under the incision. These were separate but still pretty close to one another. One of the tubes was going toward the breast/chest wall area and the other one was going towards under the arm. I truthfully couldn’t feel them due to the swelling. The tubes were stitched in place and I had to be careful to keep them where they were and not to tear the stitches. I remember at one point in the future my drain had stopped working and I noticed it was slowly being pushed out by my body. I had to push it back in and tape it in place a couple times a day till it was ready to come out. That was not only a pain and worrying, but it was gross. Super gross to think about. The drains needed to be emptied often and I had a chart where I logged how much blood emptied into it everyday. Once it reached a certain amount, (I cannot remember the amount now), I was allowed to get the drains removed. I remember it was taking its sweet time getting to that goal because I really needed to be able to move my arm above my head for radiation but wasn’t able to until he drains were removed. It turned out, it was the day before I was fitted for my radiation cast. So, that was just super. More about that in a different blog.
I had a lot of pain. I had not had a relapse of the severe nerve pain I experienced in the recovery room, but I was now taking oxycodone and a nerve pain medication called Gabapentin. I am unsure exactly when I started taking Gabapentin, but I do know it does help.
I would tell you more about what happened after that, but I am very hazy. It wasn’t until the next Halloween that I realized what my kids went as for that Halloween. I had a blurry 6 weeks afterwards. I know it was 6 weeks because I was preparing for radiation. And I was very worried about if the hematoma would interfere with the radiation and just counting the days until radiation because I wanted to stretch my arm in preparation. But, the dumb drains weren’t ready to be removed.
I did receive my surgical report during this time. I was very anxious to find out if I had clear margins. I initially had 7 tumors ranging in size in my breast prior to chemo. I also had 3 (that either looked abnormal or were biopsies). I also had a suspicious internal mammary lymph node, which is a lymph node present behind your collarbone, which cannot be removed surgically. So, chemo killed most of my cancer tumors in my breast, but it did leave one growing instead of shrinking. I also had positive cancer in 5 of the 9 lymph nodes they removed. This was surprising to say the least. I did find that I had lymphovascular invasion still, which means cancer was found in my blood vessels/lymphovascular space of my skin. So, 6 months of chemo helped, but also didn’t. Further test results of the biology of the cancer revealed it was HER-2 positive now. The initial biopsies showed it was not HER-2 positive, so we did not do adjuvant therapy during chemo for HER-2. I trust Northwestern and Dr Cristofanilli, and I saw the results from 12 biopsy samples and they all said HER-2 negative. When I did some research, one of two things could have happened, one of which is there was cancer cells that we’re HER-2 positive and it just was unlucky that we didn’t pull one sample that was. But, this is really rare because cancer is generally all the same type, and it was all in the same area and it just seems wierd. Second, is that the HER-2 negative mutated to HER-2 positive. This is also rare and the times I read about, it was when the cancer returned, not when it was still all present and growing. But, it is a mutation in and of itself. I don’t have a good answer for how this happened. It doesn’t make sense to me that they messed up as well because like I said, there were 12 samples and they took from 4 areas and analyzed each of them. Strange is all I can say. I have to admit its sad and frustrating because I missed out on a drug that has been clinically proven to help, Perjeta, which is taken during chemo. Dr C, on the other hand was ecstatic. He was super excited when he told me because he told me he was initially very disappointed and sad and was going to put me back on chemo and have me do chemo and radiation at the same time. It makes me shudder to think about that. Seriously, shudder. I can’t even imagine. I am going to move on from that thought because.. ugh. Anyways, he was super stoked I was HER-2 positive because he could put me on Herceptin for a year and then do another drug for another year. He had a game plan now and so, more weapons in the arsenal.
Oh, so back to my margins, my margins were clear by 1 mm! The smallest margin you could have to be still considered clear. (Technically its called close, but its good enough for me!) my husband says that it is the biggest millimeter in the world! I concur.
We also found out that my cancer had a subset of ‘micropalpillary’ carcinoma. Which, is also very rare and is aggressive itself. But, we were already prepared and working hard for aggressive, now weren’t we?
This article took me about a year and a half to write. I wrote it in many sections, and worked my way to the ending. It was an emotional journey. Now that it is done, it seems kinda silly that it took this long to write it. Thanks, Joe, my dorky brother, for helping me talk through and hitting it on the head- why it was so hard to blog and move past this one blog. I feel it has opened up the dam again and I can let free some of this baggage I’ve been holding onto just to get it on paper. Now, onto the next one!