Hey all! Sorry for the lack of posts. I thought I'd have more time to blog when I got home, but for some reason things got busy. Well not really...just when you sleep for 12 hours a day half of your day is gone.
I've been doing well since I got home. The first day was rough, as I was trying to get my bowels back on track I went from one extreme to the other. That with the combination of a LONG day traveling home set me back a bit. I was pretty exhausted.
I am really thankful we were able to stay at my Uncle's. There is no way I would have been able to make the drive home on Monday. Even though his place was loud, (I was sleeping with ear plugs and a sound machine), that was it's only drawback.
We finally headed home on Wednesday after my post opp appointment. My Dr. was really late on Wed. and we had to wait 1.5 hours to see her. Isn't that bad? At least we weren't in a hurry. When I entered the waiting room everyone fell silent . I'm hoping it was because I looked like I had just been bitten by a vampire as well as someone attempting to behead me. Don't you think that is better than the reason being my body Oder? What do you think?
Since we waited so long we wound up talking to two other patients. Here is what I found out from them:
- She had the same exact scar as me and it looked like it had been close to a year since her surgery...but it had only been 2 months!
- This was her 3rd surgery and her previous surgeries were done 13 YEARS AGO! (Really not the news I wanted to hear. I guess there is never a certain number of years where you can say you are in the clear of this cancer).
- Her scar went from ear to ear. They did a total neck dissection and removed 90 lymph nodes and 60 were cancerous. She also had a tumor the size of a lemon on her neck. It sounded to me like she was in denial of having a serious medical condition. She also said that she wished she felt 'normal' like she did before her surgery...lots of energy and 60 lbs. less. Ummmm I have the feeling she is normal now. She also said that she was in the hospital for a week, had multiple drainage tubes and has not had a recurrence.
It was so interesting to hear their stories and to learn that the first doctors they had were so bad that it caused them to seek out my dr. for a second opinion. How lucky am I to have started off with a great doctor? Could you imagine dealing with a bad doctor when dealing with cancer? Geesh.
Once I got called back I first had my stitches removed. (I think I had three long external stitches). I told the nurse ahead of time that I needed to be horizontal before she started the work and she was very thankful. She was so good at removing them that I hardly felt a thing! (Unlike the after my first surgery when I almost passed out from getting ONE stitch out. Granted it was long, but still!)
We met with Dr. Orloff and she was as nice as ever. I really feel that with her, and my local doc, that the fact that they are both totally normal and nice is why they are such good doctors. I've never had doctors like them and that is the one characteristic they have that other drs. of mine don't have.
She told us that she removed 43 lymph nodes and 16 had cancer cells in them. She also said that she normally removes extra lymph nodes to ensure that she gets them all. (Very smart). She also is very optimistic that the cancer cells have not moved over to the left side of my neck, especially since my tumor on the right side of my thyroid. I am to see my local doc within the next month for a regular check up and to check my calcium . (My levels are still low). I'm not sure how soon I will have blood work done but at least within the next 3 months, then I will head up to S.F. again and see Dr.Orloff for another ultrasound in 6 months.
I showed the dr. where my first IV was and how red and swollen it was. She said if it gets bigger then I should fill the antibiotic prescription she gave me, but since then it's gone down. Yeah! She also said I could shower, but to not wash or get direct water on the incision. I told her how my shoulder and the back of my neck were REALLY sore and had limited mobility. She gave me one exercise to do and an order to go to physical therapy if it didn't improve. Have you ever had a dr. give you prescriptions to use on a need basis? How awesome is that?
My shoulder is still really sore, but I'm getting more and more mobility out of it each day. I should have asked her what kind of position she had it in during the surgery, because it is SO sore. If I still have a lot of pain in another week then I will go to PT. That is right...I might be going for my Achilles AND my shoulder. How silly is that?
Before we left I asked to get a photo with the doc as I got one with my other dr. after my first surgery. I did not ask her to take a photo of my lymph nodes once they were removed, which kind of bums me out, but she said they just look like fat.
By the time we got out of the appt. it was almost 3pm and we still needed to have lunch. Needless to say John was MORE than excited to take me to the cheese steak shop that he had been eating at while I was in the hospital. It was totally sketchville, but our chicken cheese steak were definitely the best I've ever had. PLUS they had curly fries just like the ones they used to have a Burger King. (At least I had had gotten my appetite back.)
It was pouring rain all day in the city and as you know for some reason people don't know how to drive in the rain. I think it took us close to 5 hours to get home and didn't arrive into SLO until 8pm. It was SUCH a long day.
Things have been pretty mellow since I've been home. I've got a great group of friends who have been bringing us delicious meals which have been really helpful. Especially since I'm not supposed to lift anything heavier than 7lbs. (until next Friday). My shoulder/arm is just as sore, if not worse as where the incision is. I can barely raise my arm, but I was able to raise it high enough to wash my hair on Saturday. Even my ear is sore. That is right...there is a lot more of my body that is sore then just my neck. I'm sore ALL around...my mouth, jaw, cheek, the nerve in front of my ear and behind my ear. In fact I'm just starting to get the feeling back in my shoulder ear and neck. They've been numb since the surgery. I'm not sure what kind of stuff they gave me but talk about long lasting!
I've also been getting sharp stabbing pains which I think are the nerves healing. They kind of take me off guard. I'm also finally sleeping through the night but the sleep hasn't been restful. I can sleep on either side thank goodness, but I wake up when I turn over. The first few days I was home I was sleeping about 12 hours. I think my body was so exhausted.
My incision looks really good too. It's a really thin line. I was surprised to see how far back behind my ear it went. I'm sure it will heal really nice like my first scar did. I'm not real worried about it, but I do know it's going to be a pain keeping it protected from the sun over the next year. (If you click on the photo you can see how thin the incision line is).
Another part of me that was affected is my bottom right lip/chin muscle. I don't have control of it 100%. For example when I smile it doesn't go down and it looks like I have a crooked smile. John says you can't tell that much, but I can. When I laugh/smile really big I can really feel the difference. I'm sure it will go back to normal but it's definitely something I didn't expect would happen. Here is a photo of how my mouth should look vs. how it naturally looks when I open my mouth.
I've been having a hard time staying still and recovering. At least with my hurt Achilles I am able to hobble around and do some stuff around the house. Only having use of one arm has really made it hard. I've been feeling so useless in having to depend on John to do everything. I had no idea that would be so challenging for me. In fact I thought I did know what to expect after this surgery, but I totally didn't. I keep trying to stay positive as I know it could be WAY worse. What if I had a surgery that took like 6-8 weeks to recover? I really should be grateful.
I'm hoping this week will go by fast so I can reach my 14 day mark. On Thursday John and I will be heading up to Paso to watch the Tour of California finish and then on Friday we will be heading to Solvang to watch the time trial. I'm really excited about it...let's hope for minimal rain. I'm also hoping to post about my surgery experience. Hopefully I will get it written in less than a week.