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Hospital Recovery

Here is what I wrote about my recovery in the hospital after my bi-lateral salpingo oophorectomy.

            Wednesday was planned as a big day. I got to eat, even if it was a soft diet, they took out my catheter; I took a spit bath and sat up some. Dr. Z came in and officially told me personally about the surgery, which I had already heard from my parents. I had to pee in 6 hours and I didn’t so I had the catheter back, and hadn’t walked as much as I should have. I got beautiful flowers from friends and family, and texts of support. My Dad headed back to the farm to check on things and my cousin Maggie, had a meeting on the hospital campus and came to visit. That meant a lot. Mom and I just chilled and walked some and then she headed back to the hotel.

            Wednesday night was the most annoying night. I had Emily as my nurse and Lindsay as my tech. I had had Emily the previous night, and I think she thought I was a little crazy. This night though, I had a high blood pressure and temperature. They were afraid I had an infection, or blood clot, or whatever. Thankfully we got my temperature down with breathing in the incentive spirometer. I think I was woken up about every hour which was not fun. Again the Medical student came at 5:30 and then the doctor who helped Dr. Z came at 6:30 and so on.

            Thursday was a good day. I had a great nurse and tech. Rachel was my nurse and she took great care of me. I got up and walked a good amount. I also got off of the pain pump, and began taking oral pain medicine. I also worked my way up from soft foods to solids. What made my Thursday so wonderful was that my friend Kelley and her daughter Sasha came to visit me. It really lifted my spirits and was great to learn that she had been through something similar. Also with her knowing she could let some of my other friends know and they then sent their well wishes. That night I had Julie as my nurse and she was a sweet heart. That night my blood pressure started to be high, so they monitored that a lot.

Then my Friday started the same with early visits from doctors and other staff. It looked liked I could go home. But I had to pass two tests: I had to pee, and either pass gas or have a bowel movement. I felt a little rushed and was not quite ready to give up my security blanket of the hospital, and staff. I knew going home would be hard. What made this day even more stressful was the horrible nurse I had. She was so slow. The other nurses were slow, but not as bad as Ethel. She was the worse. In the morning I passed my first test and peed, I never thought I would ever be excited for that, but I was. I then needed to have a bowel movement. I think they wanted to get rid of me, or “help” me and I some how ended up with a suppository. That wasn’t bad, but some of the events after that weren’t fun.

Dad came back mid-morning, and I had gotten cleaned and was doing some walking. I didn’t get to pick what I ate and ended up with some canned peas, greasy baked fish and potatoes. I wasn’t too happy, but I ate some of it anyway. Later that afternoon I started to not feel good. Right around the time my uncle Mark came to visit, I got sick. I threw up, which is never fun and then add the fact that you are recovering from abdominal surgery and it hurts even more. We paged for the nurse, and it took FOREVER. She finally came and helped get me cleaned up; even though it was not too bad, and said that she would go and get me some nausea medicine. Needless to say she didn’t come back. And after my Dad and uncle decided to leave, I threw up again, quite a bit. Mom paged Ethel, and started cleaning me up. It was a lot more and I got it on me. Not fun. In like 30 minutes she came. And got me new blankets, and a gown, and scalded us for getting rid of the vomit. She claimed she needed to measure it, well it was almost overflowing so we needed to empty it incase I did more. At that point I was so maxed out. I nonchalantly flipped off Ethel and was ready to tell Mom to get me a new nurse. I knew I wasn’t going home, not with being sick, although I had a bowel movement around when I was throwing up.

Also with my high blood pressure the doctors ordered a CT to make sure I didn’t have a blood clot. Before going and getting my CT I got to nap and feel better. I had a great escort to the CT, and got my first scan. It wasn’t bad other than I wasn’t use to laying flat on my back and I had to get a third IV, I woke up from surgery with an IV in each hand, and then getting up, from laying flat. I probably was a little rude to the technicians but I needed help and they weren’t jumping at it. The rest of my evening was good; I ate a light dinner, and did a lot of walking. It was fun being up late walking by the nurse’s station and it looked like they were having a sleep over.

Saturday was the big day, I got to go home. I had passed the tests, my systems had woken up from surgery and we were all ready to go. I spent most of my morning cleaning up, packing and waiting for Mom. She had a harder time getting out of the hotel, parked and whatever else. By 11:30 we were ready and I was discharged. I was taken down to where Mom would pick me up and had plenty of flowers to load. Once we got all loaded we were off. We stopped in Chesterfield for lunch, and then Hannibal for me to walk around and get my hair washed. One would never think a little thing like having clean hair would matter but it does. We then made our way home and got me all settled.

Chemo

Chemo, one of those things you have heard of, but really don’t know much about or understand. Other than you think it makes people sick, and causes hair loss to get rid of cancer. But it really is something that has made leaps and bounds in how it is done and how people respond to it. For me, I was lucky, I didn’t have a tough time with chemo, I thought it would be a lot harder and something I would come to dread. So don’t hold my experience as the way it will go, it can be completely different.

I did 18 weeks of chemo, starting in August going to December. The day before starting chemo I got my port placed. That was a pretty easy experience. I don’t remember much, but know that I was awake the whole time. They used an ultrasound to find the artery to put the catheter in, they used x-ray and I wasn’t asleep, but out of it, I just laid there and listened to the music and my pulse. They cut a pocket of skin to tuck the port in and then stitched and glued me up. Other than some pain after words there was no problem at all.

My port accessed and ready to get chemo.

The next morning I got to eat breakfast and take my medications and them went to the infusion center. There the nurses where amazing, they walked me through what they were doing and were so good. So the first thing that is done is getting your vitals, you also have to sign HIPPA forms, also medications you take, and you will get a hospital bracelet. Then they access you, either using your port or finding a vein and putting in an IV. Getting poked with the needle hurts, but they have medication to numb the skin, so it won’t hurt.

They then get you started on fluids, once the nurses get your orders from the doctor you begin your pre-med period. These are medications that are given to you to prevent you from getting sick while getting the chemo and to help you the next couple of days. This medication will also make you sleepy, that is why it is important to have someone come with you. The medications I got were benedryl, the first time I got this it was injected into my IV, I quickly learned from one the the nurses that you can take it in pill form and this way it takes a little longer to get sleepy. I chose the pill because I wanted to be awake during treatment, because I could sleep during the ride home. The other medications I got were ativan, zofran, decadron, pepcid, and maybe some others but mostly those. After getting these medications I had to wait before getting the chemo, partly because I was waiting for them to mix it and just so my body could get protected.

Different bags of fluids, and chemo drugs.

While this is all happening you can get up, walk around, go to the bathroom, eat, drink, sleep, watch t.v., really whatever you want to do. Once it is time for you to get your chemo, they will hang the bag and get it all connected and two nurses will go over your information, this is to check that they have the right medicine, the right flow and much more. For the first day you will have to most likely sit for 15 minutes to the whole infusion time, this is so the nurses can respond quickly if you have a reaction. I took taxol weekly and had no problems, the first time I took it I had to sit for 15 minutes with the nurse, we just chatted and thankfully I did not have a reaction. With the other chemo drug I got every three weeks I had to sit for the full infusion time, only 30 minutes, because it caused more reactions and they just had that as a rule.

Infusions take time, I think my longest day was 5 or 6 hours, so bring things that will entertain you, I didn’t have the concentration to read, so I brought my computer, or watched t.v. or visited with the other patients or whatever. My hospital some times had people come up and do arts and crafts or chair massages or whatever which was nice to fill the time.I had a “chemo bag” which had things like magazines, my notes or journal, camera, word searches, and whatever else. I bought bunny slippers to wear around the infusion center. I did this because I wanted to feel at home and I thought some cute fun slippers would make myself and others smile. And it sure did!

About an hour after getting the pre-meds I would get tired or “stoned”, and when I was done with chemo I usually just rode in the car for the three hour ride home, depending on how tired I was I would sleep the whole ride or parts of it, or none. The thing to remember with chemo is it builds up, so the more and more you have it the more and more you are going to have some left over in your system.

Chemo still has a lot of side effects but each person responds to the medicine differently. I was told that in three weeks I would lose my hair, to prepare for that I cut my hair, and in the end my hair thinned but I did not lose it. I had nausea, but it wasn’t bad and I told my doctor and he was able to figure out a solution. They gave me a steroid the day of and two days after chemo. So for two days after chemo I felt great, so nights I couldn’t sleep, my mind would not stop. But once I was off the steroid I hit the bed, I needed at least a nap and was tired. Then as the week continued it would get better and repeat itself. I would have diarrhea, which was really not fun, but it was how my body got rid of the chemo. Sorry to tell you that, but want to to be aware.

Another thing that you have to have done with chemo is bloodwork, this is done to check your counts and make sure you are healthy. About three weeks into chemo there is a chance that you can go into nadir which means you have a low white cell blood count and you are prone to infections and getting sick. You nurse will keep you informed on your counts and let you know if anything is going on with them and tell you what to do. I didn’t go in to nadir, but I really did not do anything other than focus on chemo. So I was able to rest and take care of myself which is important. Doctors may say that you will lose weight, but that may not be the case. I ended up gaining 20 pounds thanks to the steroid, I gained an appetite, and 6 months after finishing chemo I am just now getting back to my original weight.

At my infusion center, you get to ring the bell when you finish chemo!

Chemo is something that is very individual, every single one of us will react and respond differently to this very powerful medication. So take it one day at a time, and be an advocate for yourself. Tell your doctor about your side effects even if they seem like nothing. If you don’t it could become more serious. For example my toes became tingly. And were like this for most of the chemo. So I had to take a week off to make sure there wasn’t permanent damage. If I hadn’t spoken up, my toes might still be tingly, but instead they aren’t.

I hope this helps some who are going to begin chemo soon, and let those who are curious know. This is my experience and your could be completely different, but I hope this helps a little!

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