I'm Perfect

Hello! I thought I would update before now, but I really did try to do nothing while I was recuperating and I guess that included an update here. It’s almost 9 a.m. on Monday, so you’ll see this in about 24 hours.

The surgery went just fine. I’m so used to major surgeries and this was so minor in comparison. My friend and I arrived at 9:15 as instructed, but they didn’t call me back until about 10:45 (I think — my pre-surgery ritual of taking a Xanax had more time to affect me during the wait and I was pretty out of it by the time they called me back!). They got me all suited up, the doc came and chatted with me and that was that.

It was a pretty short procedure. I’m not sure if I woke up WHILE they were extubating me or whether it was after, because I didn’t yet have my eyes open and was just waking up, but the first thing I remember is choking and gagging and coughing and my nose and eyes running because of it. I remember a nurse (or someone) saying, “I know, it’s not fun.” My nose continued to run and be stuffy all day and I had to fight sneezing. Hours later I eventually gave in to a sneeze and — wowee. Not fun. Sneezing and my level of pain has become my barometer for how I’m feeling on any given day.

Anyway, my friend got me home in the afternoon and went to pick up my prescriptions for me. Then another friend came and got me settled, created my nest on the couch, and ran to get me dinner. The next day Daniel and James came to check on me and bring me smoothies, which was all I needed/requested. Each day dinner magically appeared from near (a neighbor) and far (a friend in LA). Some of you lovely people sent me Grub Hub gift cards online which has been amazing. Even last night, after a very busy day of online meetings and trying to prep for my crazy day today, I was able to use what was left and have some Ethiopian deliciousness delivered. So, THANK YOU.

While I had hoped to, by some miracle, work last week, it became clear over that weekend that it wasn’t in the cards. And, to be honest, if I didn’t need the money I wouldn’t cook today either. I had some very generous surprise gifts come my way last week and you will be getting a personal thank you obviously. But these acts of love and generosity really touched me. Having surgery around the first of the month wasn’t the greatest, but I got through it and will move forward from here.

I spent that first week on the couch, mostly watching documentaries and burning through a couple of series. James was at the house that first Saturday and, while being less demanding than a 7-year-old usually is, it was still a lot. Getting food and drinks, having to bed over to wash hair, etc. By the time her dad picked her up the next day I was ready to recline and did so until her return last Wednesday.

Reclining is still how I’m the most comfortable. Out of my three incisions, only the biggest, almost over to my left hip, is still painful. Maybe painful isn’t the right word. Somewhere before pain and “very tender.” There was a bit of bleeding for a few days after surgery, but that has stopped.

Emotionally and mentally, I am good. It’s over now and hopefully I won’t require anymore surgeries — at least for this. James talks a lot about wanting a baby brother (it used to be a sister, now it’s a brother). I’ve been surprised at how the reality of me not having another baby has sunk in for her this last week and the amount she has talked about it. When I think back to how over the moon excited I was when my sister’s first born came along, I can only imagine what she will be like when she becomes an aunt.

I think they are testing my ovaries for all the things for funsies and I’m not expecting anything to come of that. I have my post-op appointment on Thursday.

I had my four-month check-in with my oncologist on Wednesday. They keep saying I’m graduating to six months then keep scheduling me for four months so I’m glad we got it straightened out this time! I saw Jen, the PA, who is a real character, but has taken good care of me as well. She examined me and looked at my bloodwork and everything was great. In fact, she said, “You’re perfect.” Nobody has ever accused me of that!

This was the first time I’ve seen them since I had my bone density scan in December. That scan showed that there has been further degeneration of my bones. Part of this is from chemo and the ongoing threat is the aromatase inhibitors that I take daily, which stops my body from absorbing estrogen (from outside sources, etc.). So, it’s still classified as osteopenia. The goal is to have it not progress to osteoporosis, under the assumption that I’m going to be here for a few more decades and need my bones to hang in there!

I know I’ve mentioned taking something for this in the past and having to get clearance from my dentist to do so. James and I are scheduled to go to the dentist in a couple of weeks, so at that time I’ll get a letter from the dentist (hopefully) saying my mouth is in good shape. A main risk of these drugs is the bones in your jaw breaking down. Fun! Apparently that happens when there is any type of oral issue or infection happening and they recommend not getting any major dental work while you’re on these drugs. SO, I have to get the all clear from him first.

Then I and whatever insurance covers will decide which time I get. There’s one that is a shot twice a year and another that is an IV once a year. OBVIOUSLY I’d prefer the IV but holy moly the list of potential adverse reactions is intense!

In addition to osteonecrosis of the jaw, for the shot the common side effects are: fatigue, nausea, decreased phosphorus and muscle weakness. Less common side effects are: diarrhea, shortness of breath, low calcium, cough, joint pain, headache, limb pain, back pain, eczema and rashes.

For the IV the most common side effects are bone pain, nausea, fever after infusion, fatigue, anemia, vomiting, constipation, flu-like symptoms after first treatment. The less common side effects are all the lest common side effects for the shot and about a dozen more, including muscle pain, dizziness, decreased kidney function, insomnia, weight loss, anxiety, depression, UTI, confusion, reduced sensation of touch, hair loss, yeast infection, low BP, chills, heartburn, chest pain, mouth sores, rash….. and the list goes on and on.

So, the decision seems obvious, I guess? I guess I could wait to get my first shot until my appointment in October so that the shots would line up with my existing visits. I know having to go four times a year doesn’t seem like much, but I am so. sick. of. being. in. that. building. I would love to only enter the cancer center twice a year. But, we’ll see.

I also had many questions answered, some of which are minor, but that I always forget to ask when I’m there.

Next steps: I will stay on the aromatase inhibitor (which right now is Letrozole) for either 5 or 10 years. I’m at three years now. At around 4 1/2 years, they will dust off the slides of my tumor and check its DNA. From that there will be a definitive answer of take this for five more years or there will be no benefit to taking it for five more years.

Whenever I stop taking it, I can stop taking the osteopenia meds most likely.

Then I continue to see them once a year at that point. “For the rest of my life or for a certain number of years?” She looked at me directly in the eyes and didn’t say anything. “Yes, for the rest of your life.” Of course I read into this. Is this because I am at high risk for the cancer returning? Do you expect me to not be alive very long? All those things go through my head. Is it stupid for me to save for retirement? Why can’t I just win the lotto so I can relax and enjoy my life before I die?!?!?

This is the game of cancer.

Alas, that’s not reality. There are bills to pay and summer camps to save for and a 13-year-old car and rent’s in the mail. The owner of the commercial kitchen just called and said I can get in the kitchen a little earlier today, so I’m going to hustle and try to get in there a couple of hours early. I picked up a double shift tomorrow and may add another on Friday.

No matter how long I’m in this body this time around, I ready to move ahead. Not move on, because I can’t. This is my life. I’m forever a cancer patient. I’m sorry/not sorry if me posting cancer jokes on IG makes you uncomfortable. But when it’s your life, they’re funny! Kind of. And I have a lot of “cancer friends” now.

I’m involved in a new (to me) organization called Twist Out Cancer. This has been a very long update, so Im going to post about that another time soon, but I’m thrilled to be both on this year’s Host Committee AND as one of its survivor “Inspirations” for its Brushes With Cancer annual event. My first meeting yesterday with the artist I was paired with already was therapeutic. Look out if you own a business — I might be sending your sponsorship information soon. If you feel called to sponsor — great. If not, no big deal. ;)