Aug 052015

Me and MaryIn this case I’d say both yes and no. It turns out I did not have lung cancer, for which I am eternally grateful. However, on the weekend following my CT scan, I began to feel very ill. Not only was I still really short of breath, but I was extremely nauseated and could eventually eat nothing but soda crackers and drink only Diet 7-up. By Monday, I felt deathly ill. I was supposed to make a follow-up appointment with a pulmonologist, so I called the office and they didn’t have anything open for about three weeks. I begged and pleaded, and was told I would be put on a waiting list.

So I called my primary care physician’s office and asked for another referral. By this time I was crying on the phone. My doctor called the pulmonologist’s office and got me in the next day (7/15). By the time I got to his office, I felt like I was going to pass out. The doctor told me he didn’t think I had a lung problem, but he wanted me to schedule some pulmonary function tests and a CT scan of my head and neck. He gave me something for the nausea (which helped a great deal). Then I had the labs drawn, made the appointment for the pulmonary function tests, was told the imaging center would call to schedule my CT scan, and went home and tried to work.

Later that day, I got a call from the pulmonologist’s office and was told my sodium was critically low (at 114, it was even lower than during my first hospitalization) and I needed to go to the hospital. So I went back to the ER. Of course they admitted me, gave me some Samsca  (a sodium/water pill), then told me I had to stay until my sodium was stabilized.

During my stay, I asked my doctor if I could go ahead and get the CT scan the pulmonologist had ordered. He said he thought I needed an MRI instead and would order it. When I asked the next day, the nurses said they had no order. So I did some research on my laptop to see what they were looking for and found this link. Not one of my usual references, but a good layman’s description of what this might be. And I’ve been saying the whole time I felt like there was something caught in my throat, so it made sense. I didn’t have lung cancer, but could I possibly have a tumor in my neck?

When my PCP came in that night, I asked about the MRI. He said he talked to the nephrologist and they still thought my low sodium had been caused by me drinking too many fluids (I knew that hadn’t been the case in between hospitalizations because I had been very careful and could barely drink anything at all when I was nauseated). They had agreed I did not need the MRI. When I pushed him about what I had found, he got short with me. He said I didn’t have a mass in my neck because if I did, I would hardly be able to breathe at all (um, hello!). He also told me I didn’t have cancer of any kind because I “didn’t look sick enough”.

So after four days of sitting in the hospital doing nothing but waiting for 5:00 a.m. sodium draws, being visited by an endrocrinologist who found nothing, and trying to work from my laptop, I was sent home on a 1L per day (about 4 cups) fluid restriction.

The following Monday, I went to my PCP for a follow-up. I was still really short of breath. He said he thought it was being caused by my low sodium. I wasn’t convinced. He scheduled me for three lab draws that week and sent me home. Later that week, I saw the nephrologist and asked him if he thought the shortness of breath was being caused by the low sodium. He said no, but could also offer no explanation. He told me I could have nothing to drink except for Gatorade and V8 (couldn’t pin him down to how much), scheduled me for bi-weekly lab draws, and sent me home.

By this time, I was really frustrated because nobody was addressing the shortness of breath, so I scheduled an appointment with the Cleveland Clinic down in Palm Beach Gardens for the following Wednesday (7/29).

In the meantime, my sodium began to slowly drop again, although it was still just barely low normal. I called my PCP’s office because I was concerned about not having any more tests scheduled for two weeks. I also told the nurse that my shortness of breath was getting worse. She told me it might be anxiety. If I had been standing in front of her, I might have actually slapped her. I did go off on her, saying that a person doesn’t go from working out on a treadmill five days a week to not being able to catch her breath for five minutes after waking up because of anxiety. She called me back later, “assured me” that the doctor was taking my illness seriously, and gave me some weekly lab orders.

The next day (the day before my Cleveland Clinic appointment), I got all my medical records from the hospital here (they were full of errors, so I spent the night before my appointment creating a Word document correcting all the mistakes and writing the real history of my present illness). The doctor was very thorough and said he thought I had asthma. Since I finally had my pulmonary function tests scheduled for Monday (8/4), he told me he couldn’t give me anything to relieve the symptoms because it would interfere with the tests, but said to send him a copy of the results and if I didn’t have asthma, we would go from there.

I never made it to the tests on Monday. On Sunday (8/3), I woke up and the shortness of breath wouldn’t subside, even while I was sitting on the sofa. I was miserable the entire day. I had to get some work done, so I struggled though it and then went back to the sofa. I couldn’t catch my breath. I still had an inhaler my PCP had given me that hadn’t really helped at the time, but I was desperate, so I tried it anyway. It helped a little. For about an hour.

My husband was in the middle of trying to make spaghetti for dinner when I finally lost it. We have no kitchen counters because we’re in the middle of a kitchen remodel that we had scheduled before this mess started, so it was pretty tricky anyway. About the time he got finished, I couldn’t take the shortness of breath anymore, burst into tears, and told him I needed to go back to the ER. He put everything away while I gathered my things and off we went.

In the ER, the doctor looked over my tests and on the CT angiogram they had done at my first visit, he found what looked to be a mass in my neck. He ordered a CT scan. They found a large mass, so I was again admitted.

The next day, an ENT came in and ran a small scope up my nose and down my throat (obviously not pleasant, but also not as bad as it sounds). She said I had a mass in my trachea that was blocking 90% of my airway. They would need to schedule a laryngoscopy to try to remove it and also do a biopsy. She was going to be out the rest of the week, but her colleague, whom she said she would want doing her surgery if she needed the same procedure, would be filling in for her. She also said they might have to do a tracheotomy (cut a hole in my neck and put a tube through it) to establish an airway in order to do the surgery. The thought of waking up and trying to breathe through a tube in my neck and not being able to talk or eat for several days had me pretty stressed for the rest of the night, which made my breathing even more difficult. But the ENT gave me some IV steroids to decrease the inflammation, which helped some.

Yesterday (8/4), the ENT/surgeon came in early. He said he would schedule my laryngoscopy for the next day. He also said he thought he could do it without doing the tracheotomy (not a definite, but still a huge relief). He wasn’t sure if he would be able to get the entire mass out, but he’s going to try. If not, he’ll get enough of it out so I can start breathing again and so he’ll have enough for the pathologist to test to find out exactly what it is. He seemed like a good doctor and answered all my questions, so I felt pretty calm for the rest of the day.

This morning, the CNA woke me at 4:30 to do my vital signs. After she left the room, I couldn’t go back to sleep. I’m still feeling fairly calm, but I’ve been on a fluid restriction for so long and have not been able to eat or drink anything since midnight, so I keep day dreaming of ice water, iced tea, ice cream, or a frosty pina colada or sangria margarita. Maybe I can have those things again once this is over. If he gets the entire mass (or even most of it), I’m hoping my sodium will at least stabilize and that part of my life can go back to normal while I’m waiting on the pathology results to see what the next step(s) will be, if any.

It’s almost 7:45, so now I wait. My surgery is at 10:45, so I’m not sure what time they’ll come for me. I may see if I can squeeze in a shower before I go down. I know that will make me feel better later on.

I’m putting up another happy picture today. I still have hope that today will end this.

 Posted by at 12:58 pm

  2 Responses to “They say that no news is good news”

  1. I like that picture. Get better so we can go back to the beach.

  2. […] So this time before he could say anything more, I asked, “Am I even there yet? What about the SIADH?” He agreed the SIADH is a sign of active disease, and he thinks if I got off the Keytruda now […]

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