4½ Weeks Post Op—Challenges Continue, But Help Is Coming

Sometimes you need to advocate for yourself.

I was scheduled for an appointment last Tuesday with a surgical NP.  My surgeon was out of town for part of August so my hands-on care has been handled by his staff.  His staff is excellent and I don’t have a problem with this.

On Monday at 5 PM, the scheduler called me to tell me that my appointment for the next day had been cancelled, and that “the staff” determined I did not need to be seen until my appointment with the surgeon the following week.  I told her that this was not acceptable.  I was not doing well and needed to be seen ASAP.  After some back and forth (I admit I got a bit, um, assertive) an appointment was made to see an NP on Wednesday morning in NYC. (Most of my appointments have been in the MSK facility in Montvale, but I have no issue going to NYC when necessary.)

I also wrote a bit of a nasty note to the staff, telling them that when they decided I could wait a week, they didn’t ask me how I was doing, and I felt disrespected and invalidated.  I also sent them photos of my wounds, which had deteriorated over the past several days.

I spent over an hour with the surgical PA on Wednesday, who apologized for the way I had been treated, absolutely agreed that waiting another week was not appropriate, and promised to bring this up with the scheduling staff.  She debrided all the wounds.  While doing that, there were 2 seromas (accumulations of fluid) in the abdominal wound, which she opened up.   This resulted in some dead space—2 cavities—in the abdomen which would need special wound care.  In addition, she debrided the breast tissue, also opening up the wounds there.  The good news is that there was no sign of infection anywhere, and the skin and tissue is healthy.  The bad news is that my wound care regimen suddenly got significantly more complicated and nearly impossible for me to manage on my own.  I was exhausted, the wounds looked awful to a nonmedical person, and the positioning was such that dressing them myself was more than I could manage.

After trying to change the dressings myself on Thursday, on Friday I went up to Montvale and had a nurse there change the dressings.  I had family do it Saturday night.  On Sunday, out of desperation, I called a friend who is a nurse at a local hospital (Thank you—you know who you are!) and she came over and repacked everything. 

On Monday I reached out to the doctor again and told him I needed help in the form of a visiting nurse who could dress the wounds for me. I went up to Montvale again and had one of the nurses change the dressing, while a friend who was staying with me watched.  Meanwhile the breast wounds had opened up completely; I don’t want to get too graphic but trust me, it’s bad.

Finally on Wednesday I saw my surgeon in NYC.  I was there for about 1½ hours.  He cleaned up and debrided all the wounds and assured me once again that there was no infection, and more importantly that everything will eventually heal.  It will just take time—possibly as long as 3 months for complete healing.  He also assured me that no one did anything wrong, but sometimes this just happens.

He also validated my feelings that I simply could not manage the wound care on my own.  The office initiated the procedure to get a visiting nurse to come to my home and dress the wounds.  In the meantime, I can continue to go to Montvale and have the dressings changed by the nursing staff there. 

As an aside, he also said I did not need to continue going to the hyperbaric oxygen chamber.  Any benefit from the chamber I probably received already, and at this point the benefit would be minimal.  There’s 3 hours a day of my life back.  Yeah!

I was contacted by the visiting nurse service today and someone should start coming by tomorrow.  Unfortunately, they don’t come every day; they only come every other day, so I’ll need to muddle through the off days. They suggested having a family member watch the procedure and take it on, but the only person I live with is Jon and I’m not asking him to do this.  Not sure what I’ll do, but I’ll have to figure out something.  If you’re a medical professional and know how to dress a wound, please reach out to me!

The doctor also wants to see me every week until this is cleared up, so he can continue to monitor and clean out the wounds.  He assured me that once everything heals, I’ll go back in for revision surgery and he will fix everything and make it look good.  That made me feel a lot better too.

If I had not advocated for myself, I would not have been seen last week.  If I had not advocated for myself, I would not be getting a visiting nurse. There is nothing wrong with speaking up.

Asking For Help

I wanted to write a bit about asking for help. It is extremely difficult for me to ask for help.  I was raised to be self-sufficient and to figure things out and get by on my own.  When I got married, I became part of a team.  I didn’t need to ask for help from Evan because he was always there and knew what I needed and how to help.  Now he’s gone and I have found myself in a position to have to ask for help.  I don’t want to ask for help.  I want to—expect to—be able to manage on my own.  In fact, one of the things I’ve learned over these past few months is that no one is going to rescue me. I need figure things out on my own. In addition, too many people have helped over the past several months; I can’t continue to rely on others, even as they say “Let me know if you need anything.”  Yet I’ve had to ask for food, rides, groceries, etc.  I hate having to do that.

So many people have said, “If you need anything, let me know.” I know you all mean well.  But realize that I probably won’t respond to something like that.  I can’t sit around and think of what I need people to do.  Things just come up.  If someone says, “I’m at Shop Rite, do you need anything?” that is helpful.  If someone drops off some soup or challah or dinner, even spontaneously, that’s helpful (as long as it can be frozen if I don’t need it that night).  If someone says, “Can I drive you to an appointment next Tuesday?” That’s helpful.  This was something I watched Evan do.  A general “get involved and join a committee” request was usually met with silence.  However, a “Will you join the programming committee?” request was much more likely to be well received (not always, but the chances were better).  So for all of you who have said, “Call me if you need anything,” please understand that while I know the offer is earnest, in all likelihood you won’t hear from me.  If you offer something specific, you might.

Right now I’m looking for someone who can help with wound care as a backup.  If this is you, please do reach out to me.

Today is actually the strongest I’ve felt in a while.  After going to Montvale at 8:30 this morning, my friend made me a healthy breakfast of eggs, cheese, fruit, toast, and coffee.  I don’t know that I’d have the energy to pull that together for myself, but it’s made such a huge difference in my day.  Hopefully it’s a sign of better things to come.