Welcome! Read Me!

This blog is created to give you a central location to answer any questions you have about my current and upcoming treatments and reactions. It is also created to help me make Lemonade out of the Lemons I have been given, so I will keep this as positive as I can.







Sunday, March 27, 2011

How am I feeling? Today...

Well it is just over 3 weeks since my Mastectomy and Lymph node removal surgery, so I thought I would answer the age old question. "How are you feeling?" (I reserve the right to change my reply at any time... or multiple times while writing this.) :)
I am doing pretty well, all things considered. On Monday I met with both surgeons and the (RO)Radiation Oncologist. When I met with the first surgeon (Dr Porretta) she was able to remove my surgical drains. This was a great milestone! I was definitely ready for this to happen as they had definitely become extremely annoying, and one of the stitches that was holding the left one in place had broken and was less than comfortable. So that was a great thing to have gone! The next appointment was to meet with the RO to find out the schedule/plan to start the radiation process. Well, part of me was relieved and the other part was impatient with the reply. I am not ready for radiation. The problem is Flexibility. In order to be "Mapped" and get the Radiation Therapy I need to be able to put both hands behind my head and hold onto some handles there for 30 minutes during the treatment. At the time of the appointment I was only able to just barely lift my elbow away from my ribcage and slightly forward or backward... Not even close to where I need to be to start the process. They offered either 2 or 3 weeks for me to get my flexibility back, I opted for 3 since it seemed that I had a REALLY long way to go. As of this morning I am able to touch behind my ears with both hands. So I am not too far from the goal. Maybe I should have scheduled it out only 2 weeks... but at least this way, I may be able to have a somewhat normal time before I have to endure Radiation. I have no idea how my body will react to Radiation. I have heard 2 different sides. Some who have gone through it have said that it is so much easier than Chemo... others say it was harder on them than Chemo... The only thing I know for sure is that the scheduling of Radiation will be tougher than Chemo. With Chemo I only had to go in 2-3 times every 3 weeks and it was only a 10-15 minute drive each way, however, with radiation I will need to go 5 days a week and will have to drive at least 45 minutes each way. That is a lot of driving. I am not looking forward to this at all. Hopefully the effects will be minimal so that the only real "pain" will be the travel. My last Dr visit that day was a pretty big pain. It was my Plastic Surgeon (Dr Rodrigues). He needed to add Saline water into the Expanders which will help preserve my own skin through Radiation and up until time for reconstruction. Well, that put a lot of pressure on my new "wounds" from my drain removal. In hindsight, I should have had these appointments at least a couple days apart from each other. I think I would have been a lot better off. I think it was just too much trauma for one day. I have been off of the "heavy duty" pain killers like Lortab and Percocet for about a week and a half now, but I was wishing I had some left over for that day. Luckily the Dr was right when he said after a few days that pain and pressure would be much better. (Luckily for him, since I would have beat him if that would have lasted much longer.) 
This week I worked most of the week, albeit completely from home, since I didn't have enough arm movement to allow me to drive. I was mostly clear minded because I was not taking the pain killers. It was good that I had Family who could come and sit with me and the girls. I still can't lift anything over 20 lbs. That includes Danielle, my baby, she is about 24 lbs. And I also can't reach many things that are very much taller than me... which isn't saying much. LOL But with a step I can get things into and out of the microwave, so that is a good thing! And yesterday my mom trusted me to experiment with my driving skills and let me drive her car. I am happy to report that there were no catastrophes. We all made it home without any harm. :)
Today is a milestone. I was able to get on a shirt that was not one that buttons up the front. Granted it was not easy, nor was it pain free, but I got it done. I will continue to wear button up shirts for a while until this is easier, and less painful.
My hair is coming back pretty well. It is still pretty thin in several patches, but 3 weeks of growth is definitely apparent. The girls find it pretty entertaining to touch my head and check out the new hair. I just find it weird to reach up and have this hair up there that is reminiscent of petting a short hair dog like a boxer. however my eyebrows and eyelashes that have been mostly normal through all of Chemo have been falling out like mad this week. We'll see if they end up going away completely now that I am getting hair on my head again.
My girls have been great! Katelynn and Emma are very good at giving me "gentle" hugs. Danielle needs a little help though. But she is only 15 months old, so I can't really expect her to know. Emma has been trying to get me Exercise since I tell her that getting up and doing exercise helps make you feel better. So she is always trying to make me feel all better. We'll see if I am ready to do some exercise soon so that I can feel all better for Emma. I did buy some new Running shoes. I need to break them in (even if I don't actually run with them) before the Race for the Cure on May 7th. I don't want to end up with Blisters after that day. I am hoping it will be a great time! 
I am healing pretty well, but I am still dealing with swelling, muscle pains and some pain around each incision. Here's hoping that this week will be even better than last week and that the next will be even better. :)

Thursday, March 10, 2011

There's No Place Like Home!

I have always believed that there is No Place Like Home, but this week has absolutely proven this point.
On Friday 3/4, 5 months after my original diagnosis, I underwent surgery for a Bilateral Mastectomy including the removal of all of the Lymph Nodes under my right arm. My day started at 4:30 AM so I could be ready to meet with the Plastic Surgeon before getting to the hospital at 6:30. Once I was all checked in I found out that I was Surgery #1! Just to reinforce that I am #1! As I was getting ready... the one thing that I found the silliest.... I had to wear a Hair Net on my bald little head. LOL I guess it was possible that one of my little whiskers could have caused an issue. LOL But I was ready to go. So Alex parked himself in the Waiting room and watched for the progress of #1 on a TV in there. According to the Doctors (Dr Porretta and Dr Rodrigues) the surgery went well. Nothing happened that was unexpected. And they have sent the remnants to be tested to give a full prognosis. Hopefully I will know about those results soon.
Recovery on the other hand I can't say was Normal. Friday I was pretty well dosed to keep me out of pain and discomfort. But I was likely not able to form a coherent sentence or conversation with my many visitors. By Saturday, I was a little better. I was not falling asleep in the middle of a conversation quite as often. But that isn't to say that I didn't do it on occasion. It was a bad night though. I ended up getting a high Fever late in the night, and I spent a lot of time being Cold and Hot and cold and hot because of fevers coming and going. On Sunday I was able to stand up and walk. But it was the beginning of the end of my patience with phlebotomists. I have NEVER liked needles for any reason. I have given blood before, but I HATE it. I have had so many blood tests and IV's because of pregnancy and child birth, but never got used to it then. Even through Chemo where every 3 weeks or more I was getting Blood tests and or Chemo through IV. And Still I have not become comfortable with the process or the use of needles. But it was this day that I had 4 sticks within only a few hours and they were in my hand. I can tell you, those are the worst! But since I had an IV in my wrist they could only take blood above it. Yadda Yadda Yadda. Anyways they were taking extra blood to rule out some infections that would be causing my fever. Well, They ruled out nothing. Then I had a Chest X-ray to rule out Pneumonia. With all the tests they took it told them nothing. At that point my original IV started causing some swelling in my arm so they had to switch it. Because of the swelling they had a hard time finding a vein. They brought in one Nurse from the ER to help and she gave up, and they brought in another one from the ER as well as an Ultrasound machine to find the veins better. Well... it took 3 attempts (Poke, Miss, Grind the needle around for a while to see if they can still find it... give up... repeat...) and finally they were able to get it in, in the tiny vein in my wrist. Now this basically got the job done, but would clot anytime I did not have fluid going through it, and I could no longer bend my wrist or it would stop the flow. It was also in a spot that made getting any other blood samples even more impossible. Monday I had another Fever in the morning, and still we did not know why, so my Dr said that if I could be free of any Fever for 24 hours then they would send me home! This was the best statement I had heard in Days, so I was determined to not get a fever, I would not even allow myself to stay warm. Poor Alex was sitting in my room freezing. He had multiple layers on at all times so as not to freeze, but I did not want the room temperature to effect my body temperature. It is not likely that this is the reason why I did not have a fever, but I didn't want to accidentally cause myself to get too warm.
Wednesday Morning was absolutely miserable. The Phlebotomist came at 6 am to try to get their daily dose of blood, and after 2 tries, gave up and said he would send someone else. Then at 7 came #2, she tried 2 more times, gave up and sent someone else. #3 came in tried once, Gave up, sent someone else, she came in and decided that she would likely not get anything out of my veins so she poked my fingertip and squished it to death to get two itty bitty vials of blood to do their test. And in between these attempts and breakfast I had to go get one more Chest X-ray. Then once I had officially reached 24 hours after my last Fever, they took my temperature and I was 98.2! My nurse told me she would call my Dr right away and see if I could get sent home. My Dr was in a meeting and she sent her partner. He came in and with a smile on his face said "Are you ready to go home?" I gave him a very emphatic "Yes!" And he said that there was no reason to keep me and he would let the nurse know so that she could get the process going. A tear of joy came to my eye. There was a Light at the end of the tunnel! I was almost ready to go home and stop being poked and prodded! THEN..... The blood Test results came in... My Iron level had apparently dropped from 27 to 22 in those same 24 hours. The Doc came back in and said the words that nearly killed me... "We are going to have to keep you for another day." The Then he added something else that kicked me while I was down, "We need to try to get more blood to test." Then he added the final words that, at that point I felt were just as bad as telling me that I wasn't going to live past that hour, "We may have to give you a Blood Transfusion." The Flood gates opened up and I couldn't do anything but cry. I pleaded with him that they can't possibly get any more blood out of me. I promised if they sent me home I would take my Iron Pills. I would Eat Spinach! I would do anything and everything in my power to get my Iron Levels up and I promised that if I had any symptoms of Anemia I would come back, but I could NOT handle being in the hospital one more day. He said that they needed to try to get some blood, so the nurse tried in my IV, but with it being so small she was only able to get a couple drops. She gave up and said she would not try it anymore. They all left the room for a few minutes and the Dr came back in and said, "OK, you can go home, but you have to come back in the morning to get a blood test" This test was to make sure that my Iron is either staying the same or going up. I was still in fits, but I was able to manage to say "Thank You!" I got one final Pain Pill and the nurse hurried and got all the paperwork together to get me out of there. I was in a lot of pain as I was getting my stuff together and getting dressed, but I felt so much better than ever just because I knew I was not going to sleep there one more night, and I would not have to get poked one more time!
The ride home was Bumpy. We had to stop at the pharmacy to get my prescriptions filled. While there we picked up a few food items to keep us covered until I can actually do some grocery shopping in a week or more. Then I was home. I was able to sit on the couch. Take a nap in the quiet of the house without any fear of being interrupted by the nurses. It was the best sleep ever, then I was able to wake up and have dinner (Thank You Neighbors!!) And I was able to sleep in my own bed. I slept for a WONDERFUL 8 hours! (while 8 hours without my Pain meds is not a great idea, I will deal with that pain for a Short period of time to avoid the pain of having to get more blood drawn at the hospital! I was able to have a Wonderful Breakfast cooked my Awesome Hubby! Once I had a chance to feel ready to go back to the hospital to get the blood test we headed out. Drove the Long and Bumpy road back. I walked in and told them that my veins were strictly off limits and that they could poke my finger to get any blood amounts they wanted. She was able to get 2 easy vials from my finger. (she did 2 just so she wouldn't have to poke me again if something went wrong with the first one.) We sat and waited in the waiting room to hear if we would need to check back into the hospital for the Transfusion or if we could go home and be able to live our lives in peace for a while. About 15 minutes later we got the good news that we were free to go because I was back up those 5 points that had dropped the day before! Yes, more tears of joy! Driving back again was painful, but joyful and the feeling of relief that I had inside made it all worth it. I would drive around all day as long as it meant that I wasn't in the hospital.
Last night I was able to sleep for 9 solid hours! I was able to eat real food. It Really hit the spot! (Again a Big Thanks to my Neighbors!) And I was able to watch some of the shows that I have been recording while away so I could have something entertaining when I wanted it. :) And today I had yet another Yummy home cooked Breakfast! And tonight I get my kids back home. Life Doesn't get any better than this!! (OK, I could be better if I didn't have to deal with the recovery pain, but all things considered this is the best time in my life!)

Things I have learned from this stay:
1- If I am going to be in any hospital for more than 1 day I will REQUIRE that they put in a "Pick-Line" rather than an IV so they can just take blood through that instead of poking me 7 bazillion times.
2- Some people "want to" stay in the hospital a long time to get the free food and rest/relaxation..... I am officially NOT one of those people.
3- There is such a thing as a Better Nurse and a Better Aide! I had some nurses who truly seemed to take interest in getting me healed and ready to go home. Other nurses seemed to only be there to administer my drugs and change my IV bag. Don't get me wrong, those are important tasks, but it only goes so far. Even though I know none of them will read this blog I want to say Thank You to Liz, Snezana and Cindy for being so great! And Thanks To Gabe who got me Walking the first time, And Snezana and Anabelle who got me walking farther.

And now for some Chocolate Cake.....