Things were going really well last weekend and my energy levels were higher than I expected as I wrapped up my second Zumba class on Saturday. Of course I had help from Amanda with my second one, or rather she had help from me. I only taught five songs but it felt great to attend class, see everyone and do a little dancing and sweating.
Still feeling pretty good I had a few friends over Saturday night, nothing fancy just some simple snacks and laughs. Friends left, I went to bed. But then on Sunday morning I awoke to a terribly swollen and painful neck. Hurt to swallow, move my head and sneezing and coughing were out of the question. It was swollen from where my port line goes into my jugular all the way up to my ear!
I worked on some urgent real estate issues for a few hours but it was soon evident that the swelling wasn’t going down. My daughter Megan was planning on coming over anyway so when she did I had her take me to Kaiser Urgent care at Lone tree. They did an ultrasound that revealed that I had a blood clot around my port insertion location and they did a chest Xray to make sure I didn’t have any blood clots heading down into my lungs. The urgent care doctor was nice enough but didn’t seem as concerned as I was about this blood clot. They tell me I’ll have to get a prescription for blood thinners – two shots a day plus a pill – good thing I already know how to give myself shots! They’re going to monitor the clot, some special “clot department” nurses are going to call me to follow up. Doc says, “Sure clots can move but it probably won’t”. Probably won’t?! Of course I’m freaked out and panicking!
We head back home, I’m so uncomfortable its ridiculous. And I’m upset because the Sunday before my next treatment is the day I should feel great and I was hoping to get some things done around the house.
Next day is my treatment day, Chemo #3. I was so out of it, I slept half of the day. I totally messed up a text to a friend who thought she was taking me to chemo and was really worried when I didn’t respond or come to the door when she came over (sorry Karen!). My alternate designated driver Mike took me to chemo but they decided, based on my level of discomfort, to give the anticoagulants another few days to work some magic and rescheduled me for Wednesday. Ugh… treatment delay. Can’t we just get it over with?
Back home that evening I’m napping on the couch and wake up with a fever. Just 100.5 but my oncologist gave me strict instructions at the onset of treatment that if I get a fever I’m to call immediately. So at 8:00pm the folks at after hours care suggest I get myself to the hospital. My daughter Megan comes over and we head to Sky Ridge Emergency. They tested me every way possible for infection, blood tests, urine test, etc. Apparently they were concerned that I had blood infection but didn’t tell me that until the test came back negative. They also did a PT scan to check for clots in my lungs again since I was very light headed and dizzy. Megan had to leave to get enough sleep to handle middle schoolers the next day, and Rachel relieved her. We were there for hours and ultimately they didn’t find anything definitive. Some fluids and a few bites of pretzels made me feel a little better and they sent me home with antibiotics just in case.
So about 10 hours of doctors in the last few days and I’m thinking I’m done. But wait… there’s more. Are you getting tired of this story yet? I am for sure, and the week was only like half over!
We get home about 2am and Rachel spends the night to keep an eye on me – thank you Rachel – but she has to leave fairly early to get to class at CU’s downtown campus. A few hours later I notice the paperwork I brought home from the hospital sitting on the kitchen table and pick it up to see what it says and it appears to be a synopsis of my visit.
- No evidence of pulmonary embolus (no clot in my lungs, ok good)
- A right Mediport is in place with the top in the right atrium There appears to be a nonocclusive thrombus around the catheter in the right…. bla bla bla (Goes on to explain in detail where the clot and swelling is)
- Sclerotic lesions in the T4 and T11 vertebral bodies are suspicious for osseous metastatic disease. SAY WHAT?
I google this (of course) and find that this means I have bone lesions that could be cancer spreading in my body! Oh now I’m really freaking out.
I email my oncology department and they order a PET scan to be done on Thursday. In the meantime I call to get my blood thinner shot and they tell me that my insurance has denied it and there seems to be an issue with my coverage. It’ll be $600, should we order that for you Ms. Hughes?
Ok, stop right there. Before this gets any worse, I have to shorten the story and tell you this has a happy ending.
I went in for my Chemo #3 on Wednesday and found that the steroids they gave me for nausea took down the painful swelling in my neck – sweet coincidence! I went in for my PET scan test the next day but they mistakenly told me to fast for 4 hours instead of 6 so had to reschedule it for the following day. So Friday I did the full PET scan and got the results that afternoon. My oncologist called me and said that they were definitely not cancer at this time, AND since the scan looks at everything, the only place i have any detectable cancer is the original lump I’m being treated for. Whew what a relief. And then just before 5pm, I was able to clear up everything with my insurance coverage and don’t have to pay $600 for shots on Monday.
Last week I spent over 17 hours in urgent care, the emergency room, doctor visits, tests and chemo treatments, was in a lot of pain, delayed my treatment, thought I might have cancer spreading through my body and may not have insurance to cover it. That was a scary week.
Feeling pretty good today just to be tired and have an icky taste in my mouth. 🙂