Self advocacy how to

1. Keep calling and emailing and eventually email every provider on your Wake Forest patient portal. Suddenly your return appointment to get the drain out from your abscess site has been rescheduled to the correct day!!! (Tuesday, Nov 4). Note: messaging your provider via patient portal is more effective than days of phone calls)

2. The Duke Cancer Center’s scheduling office is backed up and they never canceled your appointment for today. Go in anyway. Yes, they will yell at you that you aren’t supposed to be there. Talk about your anal abscess and two nights in the hospital and your drain removal was misscheduled and that they found fistulas in you but didn’t repair them because you didn’t sign the right paperwork before surgery and oh you just read your CT report and there is a 3.3cm mass on your right adrenal gland and the radiologist recommended an MRI but no one at Wake Forest mentioned this and you really need some help planning and coordinating these myriad issues. And it would be nice to know when your chemos will be because everyone is asking you.

3. Wait 20 minutes alone in exam room, which is no big deal … Actually it is a short wait

4. Get message from your Duke patient portal that an MRI has been scheduled for you TONIGHT at 9pm.

5. Feel very accomplished and that all your b$&@iness was justified and effective.

Being my best advocate; don’t worry til you have to worry

Wow. I thought my self-advocate heroics were mostly over after that whole seeking-a-second-opinion-and-finding-a-second-breast-tumor episode back in August. Well, apparently managing post-op care after going through the ER is also a study in self-advocacy.

I felt a little uneasy when I was being discharged and was told to come back Tuesday, Nov. 4 to get my drain out and that it would just be scheduled for me and I would get a message through my patient portal. The message came the evening I was discharged — to come back Tuesday, Nov. 11.

What? But I already had my new chemo date for Friday, Nov. 7 — a carefully chosen date to allow some time to heal from the drain removal before poisoning my body again with chemo that severely inhibits your body’s ability to repair itself. Having my drain taken out on Nov. 11 would be very, very bad. Would I now have to delay chemo for an additional week (I’m supposed to be having chemo today, but that got canceled because of this abscess business).

On Wednesday, I called and talked to two people about how I would like to get my drain out on Nov. 4 as I had been directed at discharge. Circles and circles, and someone finally calls me hours later (at 4:00 p.m. Wednesday) and said they will ask the surgeon and get back to me or have the surgeon get back to me. I should hear something within 24 hours. Honestly, I was the model of grace and patience when I told them I totally understand and I look forward to hearing from them.

But. I. Hear. Nothing.

This morning, I notice the attending surgeon on my case has been added as someone I can message through my patient portal. So around 7:00 a.m., I send a message. By 8:30 a.m., the surgeon’s nurse writes me back saying she sees in my discharge note that yes, I should return on Tuesday, Nov. 4 and she will get with the surgeon to see if we can move my post-op visit to that date (I’ve learned somewhere through all this that they only do post-op visits on Tuesdays for causes that originated in the ER).

My friends at Duke still have not posted my revised chemo schedule (despite talking to my oncologist’s NP earlier this week and she said she will change all my appointments and that my third infusion date is up in the air because she didn’t think the cancer center is open the day after Thanksgiving) … I am actually still scheduled on my Duke patient portal for chemo today! And I’m actually going over to Duke today to do my last post-op visit with my mastectomy surgeon … it had been put off for several weeks to try to coordinate with my chemo visits, but I’m just going to go today and get this done with. I am trying to keep my tentative schedule up-to-date on the righthand column of this blog’s homepage.

Now, a bit more bad-ish news — the kind you are not supposed to worry about until you have to worry. That’s right. Test results!

So my CT scan results were also posted to my patient portal. (They took a CT to diagnose my abscess). Of course, they look at all kinds of things with this and they often have what are called “incidental findings” — meaning they find something unrelated to the problem that the patient is actually in for. Well, they found a 3.3cm mass on my right adrenal gland. And the radiologist wrote in the report that it is recommended for an MRI for further study. No one ever told me about this. I am trying not to worry. I did a little Googling and these things are often benign, but at 3.3cm it may be large enough for intervention. So, in addition to three more rounds of chemotherapy, I also have ahead of me the need to explore this adrenal mass. Oh, and let’s not forget that they said they found 2 fistulas that they simply didn’t treat when they went in to drain the abscess.

Seriously. I think I am more on the tenacious and persevering side than not. How do meek or less tenacious people advocate for themselves in a system like this? I mean, I STILL don’t have my next cancer appointments finalized and I STILL don’t have my next post-op visit finalized, and NO ONE TOLD ME I HAVE AN ADRENAL MASS THAT A RADIOLOGIST RECOMMENDED FOR FOLLOW UP.

And people think I’m crazy for thinking about showing my horse this weekend? Sometimes a girl just needs to walk away from the world for a few minutes and ride her horse and pretend everything is OK.

 

I am recovering well from the draining of my abscess. I still have a drain

Discharged and restarting slowly

I was discharged around noon today (after two days in the hospital). I will have a drain in from my abscess site until Tuesday next week. I am cleared to ride if I am comfortable and was encouraged to “use some padding.” I promptly purchased some Depends-like ladies disposable underwear (an idea I trotted out – ha! – as a possibility to the doctor and she thought it was a good solution). Because you better believe I am still hoping to ride in the last show of the season this weekend if I can. Who cares if I have to wear incontinence underwear?

Now the doctor would also like me to take more time off work. I’m going to see how comfortable I am coming off the Percocet tomorrow. Although my discharge instructions encourage me to come off pain meds ASAP, they must not expect it to be too quickly because they gave me 90 pills! (I only got 30 pain pills after my mastectomy surgery).

Anyway, I’m on the mend and dreading my first post-surgical bowel movement.

I hope you’ve enjoyed this installment of the glamorous life of a cancer patient. Til I have a new disgusting story to share — take care and good night.

Chemo delayed; emotional meltdown; nurse offers me ice cream and ativan

My oncologist got back to me and said we should delay my chemo one week while my drained abscess heals.

At first, I was OK with this and the rational side of me was like, “of course, that makes sense.”

But later, at 1:30 a.m. here in the hospital, it occurred to me that my new schedule will put me having chemo the day after Thanksgiving and right before Christmas. My old pre-abscess schedule would have had me
feeling relatively well for both holidays. This just unraveled me entirely and I have been crying and crying.

I am so angry at cancer right now.

I accepted the ativan and opted for tea instead of ice cream. I look forward to a day when I don’t have to take drugs to calm down.

What’s another night?

I am staying a second night in the hospital since I had a fever in the afternoon. Thankfully, it has now subsided.

I feel like I’ve been in something of a twilight zone the last couple days — staying up all night last night thinking I would have surgery, only to not go in to the OR until like 9am. And the continuous new (and weird/gross) medical information is just more than I want to handle. One of my great fears in chemo was having to be admitted to the hospital, and it already happened after my first infusion!

It’s still unclear whether I will have chemo this Friday as planned.

Again special thanks to my mother in law for being with me during surgery, and M&M for visiting me tonight and bringing treats. And T from Irish Oaks , who works here at Baptist, also just totally brightened my day by stopping by and talking horses! So all in all, not too bad of a hospital stay.

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Snacks

Surgery was successful

They drained the abscess this morning and I left recovery around noon. They ended up giving me a spinal to numb me. It’s still wearing off. I’m so tired but the constant pain is gone hooray!

The bad news is they found two fistulas in there , also. They will talk to me about options for those during my follow up visit next Tuesday when they take the drain out.

I feel so much better!

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Admitted to hospital for a delicate matter

I have been admitted to the hospital and will be having a small surgery tonight. I do not have hemorrhoids, as I previously thought. I have a small anal abscess. Normally I would not share something so private (and gross!) but I said I would keep it real. Apparently my alternating diarrhea and constipation from my chemotherapy was more than my body could handle. I’m running a low grade fever so there is some infection but I have a surprisingly high white blood cell count (16.6) which even my medical oncologist was surprised by. Usually chemo inhibits your body’s ability to make white blood cells to fight infections but I took a Neulasta shot to help my bone marrow make white blood cells. Although usually elevated white blood cells are bad and a sign of infection, it could just be that my Neulasta did its job. Either way, it’s actually I think a good thing that my white count is up because my body has white blood cells to fight the infection.

Fortunately, it should be healed up quickly and it’s very possible I can stay on track and have my second round of chemo as scheduled on Friday.

Strangely, Wake Forest Baptist Hospital (which is a major research hospital) is not hooked up to the pretty common electronic medical record system called Care Everywhere, so they can’t get my Duke chart. My Duke oncologist is so confused by this – he’s like “we access their records all the time.”

I had a CT scan to diagnose the abscess and somehow in all of this I ended up with two IVs!

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CT machine (above).

Among today’s firsts for me were having a CT scan, my first (two) rectal exams and also having my first morphine today. This abscess involves some serious pain — i.e., I took an oxycodone overnight and it didn’t put a dent in this pain. Morphine is doing a decent job. I don’t know how I’ve endured this pain since Thursday; it’s actually nice to have my pain validated and not worry that I am just whining. When you are so sick and dealing with so many side effects, sometimes it is hard to know what is worth sounding the alarm about and what you should just suck up and deal with.

I am so grateful to my friends Monica and Madelyn for staying with me at the hospital. And SJ, who is en route. And my mother in law, who is going to pick me up in the morning. My poor husband has a contagious virus and has to stay away :(.

We will all get through this. Maybe the chemo will get easier as we go along. I will post an update tomorrow morning at the latest (may be super tired after surgery tonight).