So I’m home from the double mastectomy. Recuperating pretty well. Dr. B even allowed me to take Sam to the Martina McBride concert a week later in Thousand Oaks. I’d bought the tickets before my diagnosis and it was breaking my heart not to be able to do this with Sam, to sacrifice yet one more thing to my cancer. (I am working on a blog post on just about what cancer has taken from us.) But Dr. B was great and told Steve that if we rented a wheelchair, that it would be good for me to get out. Samantha, who refused to attend the concert with anyone but me (“If you can’t go, I don’t want to go with anyone else!”) was thrilled to be pushing me around. I called up the TO Civic Arts Center and switched our tickets to handicapped. Steve drove us there and back and we enjoyed three hours with one of our favorite performers. It was wonderful and I felt good.
We kept the wheelchair that weekend and used it to attend a funeral, and to participate in the Survivor’s Walk at the Simi Valley Relay for Life.
So backing up a moment, (and this is not really a sidebar, but it’s just so painful still to put into words that I will probably sound more glib than intended,) my friend that I wrote about HERE took a bad turn for the worse and was actually in the same hospital as me when I had my surgery. The early morning of the day I was released, Friday, she passed away. She was two floors below me, and I never got to see her. Thankfully, Stephen and Sam did and were able to offer some comfort for her two daughters and husband. Her younger daughter is one of Sam’s oldest and closest friends, and we are close to all of them, spending many wonderful nights sharing dinners with them, or holidays, or having the girls at each other’s home.
Since becoming a mom 15 years ago, I’ve now lost five mom-friends to cancer: four to breast cancer and one to ovarian cancer. It kills me to know the pain these mommies went through knowing they would not be there for their children. That’s our primary job, especially when our kids are still with us, and dependent. And knowing and loving Hannah for as long as I have made her loss the worst, for all of us. She was an amazing woman, whose only concern was about everyone else around her. I don’t expect life to be fair, but I don’t have to like it when it’s not.
What I can’t help but be incredibly proud of is Samantha’s courage in going to see Hannah. Here is a 15-year-old highly sensitive kid watching her own mother go through a life-battle in front of her for weeks, and she wants to go and say goodbye to a woman she rightly considered one of her Other Mothers. I am humbled by her bravery and her selfless concern for Hannah’s daughters and husband. She has only ever thought about them through this, and continues to try to help. Wow. That’s some human being breathing down the hall from me.
So a week later, I’m doing well and trying to take it easy. I was told not to make any large movements with my arms, especially the right side because there were many lymph nodes removed from there. My family and friends are spoiling me rotten, not allowing me to do much. I felt like I was healing. But my drains were still draining and I began taking my pain pills more regularly, which should have been a sign to me that something was not quite right.
Something you need to know about me is that I have an inhuman tolerance to pain. It’s not a good thing. It’s gotten me in much trouble over the years with my miscarriages and ectopic pregnancies. And stories about how I never felt the contractions when we were trying to induce Samantha’s birth (She ended up being an emergency C-section. Yep, I don’t do anything easy.) are legendary around us. The only sign that my pain was increasing was that I was taking my pain meds regularly. I’d go to the doctors and say, yeah, I’m feeling okay. Not taking more than I’m prescribed, and I’m sore, but that’s normal, right?
Three weeks post-op and now I’m having out-of-body experiences where I’m watching myself crying from the pain but not understanding what’s happening. My entire chest was on fire. A case of the hiccups would start me crying from the pain, but then the crying would make it worse. All I could do was sit in my chair and watch TV. If you know me well, you know how weird that is. I couldn’t read, sew, talk to anyone. I was half-stoned from the pain meds, and they were starting to not work. My doctors were on top of me, seeing me several times a week, but again, even though I was FEELING pain, I still didn’t realize that this was not NORMAL. It’s so strange, I know, but that’s what was happening. And without me communicating accurately what my pain levels were, and the absence of a fever (another one of my anti-super powers) they could only assess based on what I was saying. They’d ask me what my pain level was and I’d say 4 or 5. Manageable with drugs. I refused to overtake my meds, but they were being taken on time. Every time. Without fail. And the nights were the worst. I couldn’t stay still in bed and often ended up in my new recliner, sleeping upright.
At three weeks, Dr. H started me on physical therapy to help reduce the swelling with lymphatic massage. Since the drains were still draining, and looked normal, this was a logical response. But I was also struggling with the drains. Big time. They have to be drained and the liquid amounts have to be logged. When the output reduces to a certain amount, they can be removed, but I was nowhere near that point, so there were beginning to be other signs of trouble. I had now been on antibiotics for 8 weeks because of all of the procedures. It was likely this single fact was what kept my symptoms at bay, and me healthier than I should have been.
The day after my first PT, I had two appointments: Dr. S in the morning to go over the latest Path-Port and future chemo, and Dr. H in the afternoon. It was that morning that Stephen realized that something was very wrong with me, probably because I scared to shit out of him by saying that I now understood why some people would rather die than continue to live with chronic pain.
At Dr. S, we found out that at last count, there were 25 tumors removed from my right breast. That’s what’s called multifocal cancer and that’s why I was elevated to a Stage 2 diagnosis. By the time we got to Dr. H in the early afternoon I was a mess! I couldn’t stop crying from the pain and the very short wait was filled with me sobbing and Stephen looking more scared and helpless.
I remember Dr. H coming in. She’s a very gentle, soft-spoken woman, younger than me and filled with kindness and skill. She sat in front of me, gently took both my hands in each of hers and said, “Jake, this is not normal. There is something wrong.” She then looked at my right drain and discovered that it had actually come out of me, which had to have just happened within the last hour or two before the appointment. And the liquid in the drain bulb, it did not look good. It looked infected.
“I think the problem is with the expanders and since you’ve already decided to have the flap reconstruction, I’d like to remove them,” she said, again, very gently.
“As long as I’m asleep for it,” I answered, thinking that at least if I was knocked out I wouldn’t feel this pain any longer.
She chuckled a little. “Of course you will be. You’re going back into the hospital. I need to schedule surgery for tonight and you need to go right over there to get checked in. But we will fix this.”
It was Thursday. Samantha was still at school. I was relieved that we were doing something and so was Stephen but we were scared. I called Samantha’s counselor, a good friend of mine, and an amazing support for Sam for many weeks now, and asked her if she or someone else could get Sam and bring her to the hospital for us, with as little drama as possible. She immediately said she would do it as soon as she picked up her preschooler and we met at Simi Valley Hospital. One of my best buds, Vicki, asked if we wanted her there. I don’t know what she had to drop to come, but I did want her and she did come and so did another of my best buds, Karen, who came by right from work. I had my tribe around me again, for the second time in three weeks.
I was in so much pain that even the difficult IV insertion didn’t bother me. I could only lie there, waiting for sleep. Less than two hours later, I was done and in recovery. We were told that I had the start of an infection that was being held off by the antibiotics. I also had torn my right pectoral muscle and the expander was moving around behind it. On the left side Dr. H said there was some weird tissue that my body was forming around the expander. She couldn’t really explain it, but it was obvious that both needed to come out.
When I woke the next morning I was completely without pain. Nada. Zip. I hadn’t realized until I wasn’t in pain just how much pain I was in! I went home after two days and life has been good again. Really good. A week later I was finally back at work, after four weeks gone. And that’s where I’m leaving this novel update for now, except to say that I am so grateful for the care that I’m receiving, both personally and medically. I have been so incredibly blessed, and even at the worst, I knew I was not alone.