My sister and I at the wedding.
We got home from the wedding and I got into my pajamas. We soon went to sleep and then I woke up at around 1:45am. My head was sweating and I felt like I was burning up. I started having pain in my lungs. It was hurting when I would breathe in deep, cough, burp, or hiccup. I was also feeling stiff as I got up and attempted to lay back down. I took my thermometer to the bathroom to check my temperature. I was at 100.9. Crap. I took 2 Tylenol and went to go sit in bed. It was hard for me to lay down and so I decided to go into the living room with my phone. Anytime I have a temperature above 100.8, I'm supposed to call my oncologist or the advice nurse. The last time I had a fever, they advised me to go to the ER since it was after hours. I wanted to wait for the Tylenol to kick in and lower my fever but I just had a feeling. I was also worried about blood clots and sepsis. I dialed up the advice nurse and the wait time to speak with one was 30 minutes. I felt so discouraged. But Dash came over and sat on my lap. Dash (my male cat) is very independent. He is not a lap cat. He does not cuddle. He likes to greet people, be petted, and play with those wands with the feather attached. So by Dash sitting on me, I knew he was trying to tell me something. I think he was trying to tell me that something was wrong and to be patient, to just stay on hold. My sister came out of the room and asked me if I was ok. I told her that I had a fever and my breathing felt funny so I was calling the advice nurse. She went back to lay in bed and waited for me. Finally after 23 minutes, I was able to talk to an advice nurse. I identified myself as a chemotherapy patient, told her I was having a fever and had some pain with my breathing. I told her I was also worried about blood clots. I had researched blood clots and it sounded like me, except for the part about coughing up blood. The nurse advised me to go to the ER so I rounded up my sister and we headed out.
We made made it to the ER at Kaiser South San Francisco at about 2:40am. They gave me a mask to wear since hospitals are filled with germs and then I sat down with the triage nurse. I told him my symptoms again, told him I was concerned with blood clots, and he took my temperature. I was at 99.7. Looks like the Tylenol was kicking in but I was burning up still. They secluded me to a room and I waited for the doctor. My doctor finally comes in and I again tell her my symptoms, telling her about my fever and pain with breathing. I also mentioned to her that I was always on the lookout for blood clots since I was undergoing chemotherapy. She told me she would run some tests. She said something about running a test but negative results didn't necessarily mean I didn't have blood clots so she said she would run an angio CT. My nurse came in and she poked me in the arm to retrieve my blood. She took about 6 vials of blood. I tried to lay as comfortably as I could in my hospital bed but it hurt to breathe and I felt so much pressure on my left lung. Finally after about 2 hours, my nurse asked me if I wanted something for the pain. I should have said something earlier, but I am one of those people who will push through and suck it up. She gave me a shot of morphine through my IV and I waited for it to kick in but nothing. I asked for another shot and she gave it to me. I was then wheeled away to the radiology department where I had a chest x-ray done.
Back in my secluded room, I was still feeling pain so I asked for an additional shot. The doctor came in and told me that I had pleural effusion. According to Wikipedia, pleural effusion is "excess fluid that accumulates between the two pleural layer, the fluid-filled space that surrounds the lungs. Excessive amounts of such fluid can impair breathing by limiting the expansion of the lungs during ventilation." I am not new to this since when I started having symptoms back in December, my primary care doctor had ordered a chest x-ray and found this. I asked the doctor why I was having pain and she said it was pleurisy. Pleurisy is inflammation of the pleura. She said typical protocol would be to admit me but she would double check to see if that was necessary. I really didn't want to be admitted since hospitals are not a happy place to be. She came back and told me that I could be discharged but that she was going to give me a round of antibiotics. She told me to take oxycodone for pain. I asked for one more shot of morphine before I left and it kicked my butt. I remember feeling loopy but it definitely took the pain away. It was at around 8am when I was finally released. No angio CT was every performed and I don't know why. I went home straight to bed.
I woke up at around 12:30pm and since it was Easter Sunday, my sister, her boyfriend, and I decided to head down south to go see Hearst Castle. I packed some belongings and we got into the car. I took 2 oxycodone for the pain and it kicked my butt. We headed south on hwy 1 and stopped along the way to take pictures of the coast. I slept most of the time but we finally made it down to Cayucos where we were going to stay for the night. As the evening drew, my lung pain started to come back. It was cold and windy and breathing in that cold air hurt so bad. But I put my big girl panties on and I pushed through the pain.
I woke up at around 12:30pm and since it was Easter Sunday, my sister, her boyfriend, and I decided to head down south to go see Hearst Castle. I packed some belongings and we got into the car. I took 2 oxycodone for the pain and it kicked my butt. We headed south on hwy 1 and stopped along the way to take pictures of the coast. I slept most of the time but we finally made it down to Cayucos where we were going to stay for the night. As the evening drew, my lung pain started to come back. It was cold and windy and breathing in that cold air hurt so bad. But I put my big girl panties on and I pushed through the pain.
Gorgeous sunset in Cayucos, CA.
Back at our hotel, we settled in for the night and I took 1 more oxycodone for the pain. I had to sleep with about 4 pillows in a reclined position as my breathing was unbearable when I laid down. In the morning we woke up and headed to Hearst Castle in San Simeon. I took 1 Tylenol 3 and 1 oxycodone for the pain. I knew the codeine in the Tylenol 3 could help my cough. I called my oncologist at 9am. I spoke with the medical assistant and told her about how I was in the ER the previous day and she patched me through to my doctor. My oncologist told me to hold on a second while she looked over the ER notes. I told her how my breathing was still painful. She told me that in comparing my chest x-ray to the previous one, the amount of fluid looked the same. My pleural effusion didn't cause me any pain in the past, just an annoying cough. I told her I was concerned about blood clots but that there was no angio CT done in the ER when the doctor said she would order one. My doctor agreed that we needed to rule blood clots out. I told her I was down south but could come in tomorrow for the CT scan. We scheduled an appointment for 10am Tuesday and she told me to stop by her office after my appointment for the results. She also advised me to take 2 Tylenol 3 and 1 oxycodone for the pain. I took an additional Tylenol 3 and by the time we hit the castle, I felt better. The pain seemed controlled at this point and the only problem I had was walking up 100 stairs to get to the tour of Hearst Castle. I was huffing and puffing by the time I reached the top.
Hearst Castle.
It's Tuesday, April 10th and I'm headed to my angio CT appointment. I check in and get called fairly quickly. I'm greeted by a tech who will start my IV. He pokes my right arm but nothing. He pokes my left arm but nothing. He asks if he can try one more time on my right arm at a different location. I say go ahead. As much as I dread being poked, it has to get done. I'm sure he's been doing this for a long time and my veins are just hiding. 3rd times a charm and we get the IV started. I head over the the CT scan room and lay in the little bed. They tell me that I'll get a shot of iodine that will show blood clots in the scan. There's also a part where you get some solution in the IV and it makes your body warm and it feels like you're going to pee. Very weird feeling. So I get slid into the donut shaped device and it tells me to breath in. It's over in a matter of minutes. The tech tells me to sit outside the room in the chairs. Ok. Normally they tell me I can go and that my doctor will call me with the results. The tech says he needs to talk to my doctor as he's not sure if he needs to leave my IV in or not. Now I know something is wrong. Tears escape my eyes and my mind starts racing. The first thing that pops into my head is that my cancer has spread to my lungs. It's my worst fear. I wipe my tears and collect myself. I wait patiently and then the radiologist appears. She tells me that she needs to go talk to my oncologist and she'll be right back. I wait. She finally comes back and says that my IV can be removed and that I need to go see my oncologist right away.
I head on over to the Orchid Center (it's within the Kaiser Hospital, just the name of the oncology wing) and ask for my doctor's nurse. She comes out to get me, takes me vitals and sits me in a room. I wait about 15 minutes and she comes in. You have blood clots in both your lungs she tells me. I start to cry. I knew it. Dash knew it. Something was very wrong with me. Blood clots can kill if left untreated. I started to get mad. What would have happened had I not spoken up and called my oncologist? Were the blood clots going to catch up with me? Would it be too late then? I was released from the ER without being checked for blood clots. They could have caught them on Sunday. My doctor tells me that I have to start Lovenox shots and Coumadin (these are anticoagulants) immediately. She also says I will be on Coumadin for the rest of my life. I have a choice of either being admitted into the hospital and being treated or I can get my meds and give myself the shots at home. Of course I choose the latter. Kaiser has an Anticoagulation Clinic that will monitor me and a pharmacist will call me to instruct me on how to take my new meds. I pick them up and the head nurse at the Orchid Center teaches me how to give myself the shots. It was nauseating! Luckily, the pain will disappear within in a few days but the blood clots themselves will take months.
The lovely Lovenox shots I have to give myself twice daily.
I'm instructed to take 5mg of Coumadin at night and to do the shots every 12 hours. It's such a chore giving myself shots and I cringe every time I do them. I'm to get a blood test done on Friday, it's called an INR test, that will check to see how thick or thin my blood is. Ideally we want to be between 2-3. Below is too thick, above is too thin. On Friday I go in for my blood test and within a few hours, the results are ready. I'm at an 8.2. Too thin. The pharmacist calls and instructs me to stop shots and pills for the next 3 days, that I'll need another test on Monday morning. I know it's going to take some patience and time to get my levels just right but for now I'm happy that I don't have to give myself shots. I also get to invest in one of those fancy medical alert bracelets that says I'm on Coumadin. Should anything ever happen to me in an emergency and I can't tell doctors that I'm on Coumadin, this bracelet will come in handy and notify them. There is so much to learn about Coumadin. How I might bleed more easily now, bruise easily, no more contact sports for me, I have to notify the pharmacist if I want to take anything over the counter....the list is endless. But this is my life now.
