It's been a few weeks since my mastectomy. I am still healing. I am not 100%, but each day I am slowly getting better. While I sit here and heal, I have thought about putting a post together to try and help other ladies who may be facing a mastectomy and answer any sort of questions that they may have. One thing one has to remember is that every one is different. Everyone heals a certain way. Everyone has a different pain tolerance. But here are a few things that I thought were very helpful and wish someone had told me... or they did tell me.
Pre-surgery
* It's okay to cry. Going into surgery is and can be a frightening experience. It's okay to shed your big girl panties (literally, you have to). There's lots of things that can go wrong while under anesthesia and it's okay to be a little or a lot freaked out.
* If you go to OHSU, be prepared to take a shower the night before and the morning of with this putrid smelling "soap." It's an anti-bacterial wash to get all the germs off of your body.
* Change the bedding the day before your surgery. When you get home, and you want to lie in bed, it's nicest to do it on fresh sheets.
* Packing - pack light. Pack a pair of pants that are easy on and off (think elastic, yoga pants). You don't want to be buttoning and zipping up a zipper. My sister-in-law got me a great shirt from Heal in Comfort. The shirt was nice and comfortable and I wore it for days. Pack some socks and a pair of underwear. Bring a book, iPod or something to do in your down time. Unless you like daytime TV, TV sucks. Pack a shirt that buttons up or zips. Wear easy on/off shoes to slip into while you're in the hospital. Toiletries too.
* Pack a few snacks, easy on the tummy. When you order room service, it usually takes 45 minutes to an hour.
* Pack one of those neck things that you bring on an airplane. You'll be sleeping sort of upright for a few days.
* Shop. Make sure you've got your fridge and pantry stocked up.
* Make plans to have help with you the first week.
* Leave that toe nail polish on! They didn't say anything about my red toe nails. I also had on clear polish on my fingers. No one said a word.
* Ask your surgeon if you will see any bandages on your chest following the surgery. My surgeon used dermabond which goes over the incision and makes it waterproof. In addition, my surgeon doesn't use any "bounding" or bandages. However, if I wanted to be put into a camisole or something, she would have done that.
* Make your post-surgery check up before surgery.
Surgery
* Yes, they will intubate you - put a tube down your throat to help you breathe.
* They will most likely before you wake up from surgery drain your bladder. That means a catheder.
* You'll meet your surgeon again, the anesthesist, nurse anesthesist, head nurse of the OR and more. It's a bit overwhelming.
Post-surgery
* If your at all modest, throw it out the window. They've seen it all!
* Have an advocate with you. When you get out of surgery you're weak. I could barely press the "Nurse" button on the bed and when I got one, they could barely hear me because I could barely talk because of the tube that was down my throat.
* If you have to use the bathroom, try your hardest to do it yourself by getting out of bed. But do it slowly. Get help from everyone you can. I went about 8 hours after surgery. It took about 10 minutes for me to get from the bed to the bathroom about 10 feet away. I first sat up, rest, swung my legs over the side of the bed, rest, stood up, rest, walked a bit, rest, walked more and got to the toilet. I did tell everyone to give me privacy so I could pee. I don't pee well when everyone is watching me. And yes, they do measure the amount of urine output. (This is where having easy on/off shoes works great)
* Expect drains to be annoying. They are stitched in place. Pin them to your hospital gown.
* Expect to be sore - as in you just bench pressed your max about 100 times.
* Expect not to be able to take a deep breath in. Shallow breaths are all you can do until the swelling goes down, and if you had immediate reconstruction the pectoral muscles will be sore.
* Don't worry about wearing underwear. It's over rated after surgery in a hospital.
* Get up and walk as much as possible.
* Don't expect to get lots of sleep. Nursing shift change and vitals to be taken every 4 hours makes sleeping a pain.
* Keep a barf bucket nearby.
* Make sure you have water handy at all times.
* You may get a cough. This is a result of the intubation. I coughed a lot and got a lot of phlegmy stuff up.
* Fill your prescriptions at the hospital pharmacy.
* Expect the male CNAs to ask if you need any help with hygeine. I had to laugh because all the male CNAs asked if I need help. None of the women did.
Going home, I wore the same elastic pants I came to the hospital in. I also wore a mastectomy camisole home with the drains attached to it. The cami zips in the front. I didn't velcro the drains to it, but rather pinned them to the camisole itself. I tried, but it was too uncomfortable. If you get a bra or cami specifically for the drains, make sure your cami is roomy around the chest because it will be swollen. Also in the car, I made sure the seatbelt didn't touch my chest. You can put a pillow or something where the belt goes across the chest to pad it.
At Home
* If you had a double mastectomy, you won't be able to lean on anything in any direction because of the drains.
* Use lots of pillows.
* Don't forget to move around. You are at a higher risk for blood clots following surgery.
* Rest
* Do your exercises to get your shoulders working again.
* If you had axillary dissection, watch for cording or axillary web syndrome. If you suspect you have it, then tell your surgeon and have them refer you to a physical therapist who is certified in lymphedema.
* Get a lanyard to hook your drains on when taking a shower. Your first shower will feel great but take it very slow.
* Driving - my doctor said I could resume driving after I stopped taking narcotics and could turn my head left and right without pain.
* Drains - My surgeon said that the drains can come out when it stopped draining over 30mL in a 24 hour period for 48 hours. Again, the magic number is less than 30. For example: Day 5, in a 24 hour period, my drain collected 29mL cummulative. On Day 6, I measured 25mL of fluid in a 24 hour period. That means I can get the drain out. Now if on Day 6, I measured 33mL of fluid in a 24 hour period, I would not get the drain out. It has to be 30mL or less in a 24 hour period for two days straight. Mine came out one drain at a time.
* Stay on top of your pain medication.
Showing posts with label drains. Show all posts
Showing posts with label drains. Show all posts
Saturday, July 7, 2012
Wednesday, June 27, 2012
Day 165 - Still healing from mastectomy
It's nearly 2 weeks since the double mastectomy and I am still healing. Sometimes I wish I could self heal in the matter of moments... but alas I am not Wolverine or an angel! Ha! But I am getting better.
Monday I went back to the doctor... or tried. The PA was not in on Monday... it was his day off, so I had to see Christine, the nurse navigator who said she'd pull my drain if they weren't available. So at 1p, I went to see her! While I waited, I saw Brooke and she and I chatted for about 15 minutes. So nice to see her. She's awesome. I thanked her for getting Dr. Naik involved in getting me a private room. She thought I looked great. We were chatting so long that they paged her because they were looking for me! Ha! Then I went and saw Christine. I had emailed the team about my lymph node in my neck, wondering if it was clear of cancer and how they would figure that out. Christine told me that Dr. Naik isn't concerned about that node and believes it's cancer free. But she said that she would put in an order to get a new PET scan done so I can confirm it just for peace of mind. I said thank you and would like that done. Then she took out my drain and helped me get into a T-shirt. It was nice wearing a shirt that didn't have a holder for a drain. It feels so good to walk around without a drain, too! :)
Yesterday, my mom and I had a mother-daughter day. It was so nice. We went and had a manicure/pedicure. Then went and had lunch followed by shopping! My mom got the mani and I got the deluxe pedi. We went shopping and I got a few tank tops that has the built in bra, a t-shirt, skirt and a v-neck dress. All the clothes fit perfect. And the tank tops... I have nice little boobies! Brad says he thinks I came out with the same size boobs as I went in. And the dress... it's a v-neck and you can't see any scar. I want to go and get some more of those tank tops. I like them a lot... they are so soft. And the skirt is very cute too. Oh yes, and I showered on my own. No more drains!
Today just hanging out with mom and the girls. The weather is nice, so they will be going outside to play in a few and I plan on working from home. I've got an appointment for the Physical Therapist who will help me with the cording issue. It's an out of network, so we'll see what happens and how much I will have to pay. If it's too much, then I may go back to Providence Portland's PT and work with them. I have a relationship with them and my former PT says she has counter parts who work with patients with lymphedema and such. So I may give them a call. Other than that... not much else to report. My hair is growing. Mom keeps commenting on it every day. It's now starting to cover the scars on my head. I know that I had to pluck my eyebrows on Sunday! I haven't done that in a long time! Goes to show that my hair is definitely growing in.
Until next time... (oh yes, I promise to post pictures...)
Monday I went back to the doctor... or tried. The PA was not in on Monday... it was his day off, so I had to see Christine, the nurse navigator who said she'd pull my drain if they weren't available. So at 1p, I went to see her! While I waited, I saw Brooke and she and I chatted for about 15 minutes. So nice to see her. She's awesome. I thanked her for getting Dr. Naik involved in getting me a private room. She thought I looked great. We were chatting so long that they paged her because they were looking for me! Ha! Then I went and saw Christine. I had emailed the team about my lymph node in my neck, wondering if it was clear of cancer and how they would figure that out. Christine told me that Dr. Naik isn't concerned about that node and believes it's cancer free. But she said that she would put in an order to get a new PET scan done so I can confirm it just for peace of mind. I said thank you and would like that done. Then she took out my drain and helped me get into a T-shirt. It was nice wearing a shirt that didn't have a holder for a drain. It feels so good to walk around without a drain, too! :)
Yesterday, my mom and I had a mother-daughter day. It was so nice. We went and had a manicure/pedicure. Then went and had lunch followed by shopping! My mom got the mani and I got the deluxe pedi. We went shopping and I got a few tank tops that has the built in bra, a t-shirt, skirt and a v-neck dress. All the clothes fit perfect. And the tank tops... I have nice little boobies! Brad says he thinks I came out with the same size boobs as I went in. And the dress... it's a v-neck and you can't see any scar. I want to go and get some more of those tank tops. I like them a lot... they are so soft. And the skirt is very cute too. Oh yes, and I showered on my own. No more drains!
Today just hanging out with mom and the girls. The weather is nice, so they will be going outside to play in a few and I plan on working from home. I've got an appointment for the Physical Therapist who will help me with the cording issue. It's an out of network, so we'll see what happens and how much I will have to pay. If it's too much, then I may go back to Providence Portland's PT and work with them. I have a relationship with them and my former PT says she has counter parts who work with patients with lymphedema and such. So I may give them a call. Other than that... not much else to report. My hair is growing. Mom keeps commenting on it every day. It's now starting to cover the scars on my head. I know that I had to pluck my eyebrows on Sunday! I haven't done that in a long time! Goes to show that my hair is definitely growing in.
Until next time... (oh yes, I promise to post pictures...)
Sunday, June 24, 2012
Day 162 - Still swollen
Not much new to report here. Just still swollen and it hurts in certain places... mainly under my arms. My left drain is now draining under the 30mL for more than 48 hours. So tomorrow morning, I am going to go and get the last one removed. Then I think I'll be able to feel better about the whole procedure and really start the healing process. :)
Until next time....
Until next time....
Friday, June 22, 2012
Day 160 - A mastectomy is draining
Not much to report today except that I only have one drain in my body! This morning I emptied my drain on the right side and it was 48 hours of having 30 mL or less of fluid coming out. So I called the reconstructive surgeon's office and told them I wanted to get the drain taken out. I went in at 1p with mom. She got to see the tube being taken out, what the tissue expander looks like (I have a picture) and the silicone one that I will have placed inside me. Hopefully on Monday I will be going in to get the last drain taken out of me. It feels so nice to have the one out on the right side. I can now lean on my right side and maybe even sleep on my right side tonight. That will help with the kink in my neck.
I also finished the Fallen series by Lauren Kate. That's a fun series. I enjoyed it.
So, let me finish with my stay in the hospital. I believe I was on Monday, June 18.
I woke up early that morning to the junior doctors doing their rounds. The first batch came in at 6a. That was the reconstructive doctors. They said that I was healing well. They also took a look at my pain ball. They said that it was low, but I still had some left. They could fill it if I needed it. Then they left and I was left to fall back asleep... which I did quickly. Then at 7 the next round of junior doctors came in. This time it was the surgeons. The doctor who wanted to discharge me the day before was there. He said that he saw that I was having nausea issues and that's why I never left. Then his little doctor wanted to look at my wounds. Then she wanted to look at the other side, but instead of walking around the bed, she tried to lean over me and look. I told her to please go around. But then the other doctor said that it was okay, she didn't have to look because plastics had already been through. She said okay and then left with the other doctor. By that time I was already awake, so I asked Brad to order me some breakfast. I knew by the time it came, it would be 8. Breakfast came around 8... french toast and hashbrowns. It was good. And surprise... Cathy was my day nurse again! It was a surprise. She said she normally doesn't work three days in a row. But we were happy that she was my nurse again because she rocked. She got my discharge papers all ready to go. She got my prescriptions and gave them to Brad to fill at the pharmacy at OHSU. Meantime, I got a visit from Newman. It was nice to see him. He's been with us on this OHSU trip since practically the beginning. It was the only visitor other than Bill who I allowed to come into my room. He had me laughing so hard... and I told him to stop because it hurt so much. I couldn't breathe too deeply. Then they left to go drop off my prescriptions. Brad hung around the hospital room for awhile before he left to go get some breakfast. He wanted to make sure he was here if Dr. Naik came to the room. He came back and she still hadn't come.
In the meantime, we talked to Cathy because we wanted to get my pain ball refilled. Oh my gosh! What a pain! First they said they weren't going to fill it. Then Cathy couldn't find a doctor to get a prescription to get it filled. Turns out there was some sort of conference going on. So then she went and paged the head of plastics to get this taken care of. Then the pharmacist came into the room and said the same thing... but they were mixing my pain ball prescription so I could leave. They wouldn't be able to give me the ball until the prescription was done and signed, but they could at least get it ready. Then the pharmacist left. Cathy came in and told me what was going on. Then a little later, the pharmacist came in and said that they were supposed to fill my pain ball up on Saturday, but they never did. So push come to shove, I got my pain ball prescription. In the meantime, the physical therapist came in and gave me some exercises to do while I recover. Wonderful. She made me practice some and she also made me practice getting out of bed and walking around the room. She was impressed with my mobility. Somewhere in that time I ordered lunch. Cathy also came in and said that she was waiting for the pain ball stuff, but in the meantime she was going to lunch. If it came in, she said she told her fellow nurse that a doctor had to be paged to exchange the ball. We told her we wouldn't leave the hospital until she came back from lunch. She wanted to say good bye to us and same for us. Finally the pain ball came in and we told the fill in nurse that she was supposed to call the doctor to give it me. She said that she changes them all the time. Whatever. She left with my prescription and about 10 minutes later, Cathy was back with it. She ended up hooking me up to it. We got it working and it was working good because I could feel the medication numbing up my chest area. I wonder how long I had been without it. Hmmm...
Oh yes, Brad decided to take some of our stuff to the car. It was at that time, Dr. Naik appeared. She was doing some rounds. I had to call Brad because he had questions for her. She stopped in for just a few minutes and then left.
Finally... shortly after 1, Cathy wheeled me out of the hospital and I was on my way home. I got home and both girls were napping. It was nice that I came home to a quiet house. I went upstairs and laid in bed reading. Amelia was the first on who woke up. Brad brought her into my room and I just started crying. I was so happy to see her. It had been three full days where I didn't see or talk to her and it was great to see her... know why I am going through this hell. Elaina came in later and I got to kiss her. Sweet thing. Dinner was good... left overs. I didn't have a huge appetite, but it was nice just to be home. I didn't spend too much time downstairs, but I spent enough time to see my family.
At around 730 that night, I got a call from Cathy. She was leaving for the night and thought that she forgot to unclasp the clasp on the tubing to make the medication go. I told her that she did do her job and that the pain medication was flowing so nicely now. Crazy, huh? So that's how my stay ended up!
I also finished the Fallen series by Lauren Kate. That's a fun series. I enjoyed it.
So, let me finish with my stay in the hospital. I believe I was on Monday, June 18.
I woke up early that morning to the junior doctors doing their rounds. The first batch came in at 6a. That was the reconstructive doctors. They said that I was healing well. They also took a look at my pain ball. They said that it was low, but I still had some left. They could fill it if I needed it. Then they left and I was left to fall back asleep... which I did quickly. Then at 7 the next round of junior doctors came in. This time it was the surgeons. The doctor who wanted to discharge me the day before was there. He said that he saw that I was having nausea issues and that's why I never left. Then his little doctor wanted to look at my wounds. Then she wanted to look at the other side, but instead of walking around the bed, she tried to lean over me and look. I told her to please go around. But then the other doctor said that it was okay, she didn't have to look because plastics had already been through. She said okay and then left with the other doctor. By that time I was already awake, so I asked Brad to order me some breakfast. I knew by the time it came, it would be 8. Breakfast came around 8... french toast and hashbrowns. It was good. And surprise... Cathy was my day nurse again! It was a surprise. She said she normally doesn't work three days in a row. But we were happy that she was my nurse again because she rocked. She got my discharge papers all ready to go. She got my prescriptions and gave them to Brad to fill at the pharmacy at OHSU. Meantime, I got a visit from Newman. It was nice to see him. He's been with us on this OHSU trip since practically the beginning. It was the only visitor other than Bill who I allowed to come into my room. He had me laughing so hard... and I told him to stop because it hurt so much. I couldn't breathe too deeply. Then they left to go drop off my prescriptions. Brad hung around the hospital room for awhile before he left to go get some breakfast. He wanted to make sure he was here if Dr. Naik came to the room. He came back and she still hadn't come.
In the meantime, we talked to Cathy because we wanted to get my pain ball refilled. Oh my gosh! What a pain! First they said they weren't going to fill it. Then Cathy couldn't find a doctor to get a prescription to get it filled. Turns out there was some sort of conference going on. So then she went and paged the head of plastics to get this taken care of. Then the pharmacist came into the room and said the same thing... but they were mixing my pain ball prescription so I could leave. They wouldn't be able to give me the ball until the prescription was done and signed, but they could at least get it ready. Then the pharmacist left. Cathy came in and told me what was going on. Then a little later, the pharmacist came in and said that they were supposed to fill my pain ball up on Saturday, but they never did. So push come to shove, I got my pain ball prescription. In the meantime, the physical therapist came in and gave me some exercises to do while I recover. Wonderful. She made me practice some and she also made me practice getting out of bed and walking around the room. She was impressed with my mobility. Somewhere in that time I ordered lunch. Cathy also came in and said that she was waiting for the pain ball stuff, but in the meantime she was going to lunch. If it came in, she said she told her fellow nurse that a doctor had to be paged to exchange the ball. We told her we wouldn't leave the hospital until she came back from lunch. She wanted to say good bye to us and same for us. Finally the pain ball came in and we told the fill in nurse that she was supposed to call the doctor to give it me. She said that she changes them all the time. Whatever. She left with my prescription and about 10 minutes later, Cathy was back with it. She ended up hooking me up to it. We got it working and it was working good because I could feel the medication numbing up my chest area. I wonder how long I had been without it. Hmmm...
Oh yes, Brad decided to take some of our stuff to the car. It was at that time, Dr. Naik appeared. She was doing some rounds. I had to call Brad because he had questions for her. She stopped in for just a few minutes and then left.
Finally... shortly after 1, Cathy wheeled me out of the hospital and I was on my way home. I got home and both girls were napping. It was nice that I came home to a quiet house. I went upstairs and laid in bed reading. Amelia was the first on who woke up. Brad brought her into my room and I just started crying. I was so happy to see her. It had been three full days where I didn't see or talk to her and it was great to see her... know why I am going through this hell. Elaina came in later and I got to kiss her. Sweet thing. Dinner was good... left overs. I didn't have a huge appetite, but it was nice just to be home. I didn't spend too much time downstairs, but I spent enough time to see my family.
At around 730 that night, I got a call from Cathy. She was leaving for the night and thought that she forgot to unclasp the clasp on the tubing to make the medication go. I told her that she did do her job and that the pain medication was flowing so nicely now. Crazy, huh? So that's how my stay ended up!
Thursday, June 21, 2012
Day 159 - Music to my ears!
Just got back from my two doctors appointments. They were good appointments. Disappointed at one, but elated at another.
First one was with the reconstructive surgeon... well actually the PA, Jason Carr. He looked at my incisions and said they were looking really good. Then he looked at my paper sheet where I recorded how much fluid came out of each drain. He said that one of the three drains could come out today. I was a little disappointed to hear that, but happy to hear that at least one drain got to come out of my body. It didn't hurt at all. I asked if the other drain would hurt when it's being taken out because it was bigger. He said no, the little one usually hurts the most because the tubing on the exterior is smaller than the tubing on the interior. Hmmm... That's good. He said that if I can keep the drainage down to 30mL per day for 48 hours, then I could have the other drains taken out. So I am expecting to have these drains in throughout the weekend. Heh, that's not that long in the grand scheme of things. Dr. Thaker came in while I was there. She said that I was looking good and healing really well. The blister on my chest is also looking good. She gave me the thumbs up and said that maybe in two weeks we can start on the saline fills. Hooray. I disposed of that awful pain ball. And an appointment was set for next Thursday to get the drains removed. However, they said that if I need them removed earlier than I could just call. Fantastic. :)
Next we moved on to Dr. Naik's appointment. We checked in and then I went to the infusion room because I just wanted to say hello to everyone there. They said that I looked fantastic and that I looked all summery. Well, it is 70 something degrees outside! They were happy to see me. I gave them a full report of how my surgery went and one of the nurses asked how I liked test driving my new boobs! I love it. I think I made a memorable impact on them.
Dr. Naik was running late, or at least the MA who was leading all the patients in... that would be Maureen, one of my favorites. We chatted a bit and she asked how I was doing. She said that I looked very good. We finally got into the room and got all situated. Then Dr. Naik came in. I zipped my cami down and she said that I was looking really good. Then she said that she didn't have the final pathology report back, but she did have the preliminary report. She said that she took out 16 lymph nodes. Of those 16, 15 came back clear, cancer free. One lymph node did come back positive, however, there were scant cancer cells in that node. As for the breast, the margins were clear, meaning that they got all the cancer out. It was music to my ears. So here's my thought... while I don't know if they got all the cancer out of my lymph node in the clavical area, I am HIGHLY certain there's no cancer there. The reason, the lymph nodes under my arm... there were several involved at the peak of my cancer. Now there was only one, and that one wasn't totally infected with the disease. That leads me to believe that there's no cancer in the one in my neck area. I can say with high confidence that I am cancer free for the moment. Next on the list... radiation! :)
We did talk about my arm - left arm. It's a bit sore under my arm near the armpit and as I try to extend it outwards, it hurts like the dickens. I did some research online and I think it's Axillary Web Syndrome or cording. Here's a sort of quasi definition of it:
"Researchers are still studying what exactly makes cording happen. Some experts believe that the surgery to the underarm and chest area traumatizes the connective tissue that encases nearby bundles of blood vessels, lymph vessels, and nerves. This trauma leads to inflammation, scarring, and eventually hardening of the tissue. This hardening can spread down the fibers of the connective tissue, which causes the cords to form."
So now I have a referral to see a physical therapist after I get the drains taken out. It's a temporary thing, so I am not too worried about it. However, there have been studies that show that it may increase the risk of lymphedema where my arm could swell up. Ho hum. Such is the life of a breast cancer patient.
As we were leaving today, the MA, Maureen, said that Brad was the world's greatest husband. I agree. Without his support I could not be where I am today. He has shown up at every single appointment with me (well the very important ones) and he went to every single chemo sucky appointment. I couldn't have asked for a better hubby! Thanks.
I also want to thank all my wonderful family and friends and even those I don't know. Without your prayers and constant support, I wouldn't have been as positive through this. I truly mean it.
To celebrate today's news, I took Brad out to Taco Bell! Yum yum! :)
A special thank you to Natalie, Jay, AJ and Trevor for the beautiful flowers and the wonderful Healing in Comfort shirt. I love the shirt... it's so nice and comfy and has a place for 4 drains! Ha! Thanks for the influx of cards. Kris, thanks for the celebratory care package. The girls love their tiaras. I can't wait to slip into my bathing suit cover up. March is just around the corner! ;)
First one was with the reconstructive surgeon... well actually the PA, Jason Carr. He looked at my incisions and said they were looking really good. Then he looked at my paper sheet where I recorded how much fluid came out of each drain. He said that one of the three drains could come out today. I was a little disappointed to hear that, but happy to hear that at least one drain got to come out of my body. It didn't hurt at all. I asked if the other drain would hurt when it's being taken out because it was bigger. He said no, the little one usually hurts the most because the tubing on the exterior is smaller than the tubing on the interior. Hmmm... That's good. He said that if I can keep the drainage down to 30mL per day for 48 hours, then I could have the other drains taken out. So I am expecting to have these drains in throughout the weekend. Heh, that's not that long in the grand scheme of things. Dr. Thaker came in while I was there. She said that I was looking good and healing really well. The blister on my chest is also looking good. She gave me the thumbs up and said that maybe in two weeks we can start on the saline fills. Hooray. I disposed of that awful pain ball. And an appointment was set for next Thursday to get the drains removed. However, they said that if I need them removed earlier than I could just call. Fantastic. :)
Next we moved on to Dr. Naik's appointment. We checked in and then I went to the infusion room because I just wanted to say hello to everyone there. They said that I looked fantastic and that I looked all summery. Well, it is 70 something degrees outside! They were happy to see me. I gave them a full report of how my surgery went and one of the nurses asked how I liked test driving my new boobs! I love it. I think I made a memorable impact on them.
Dr. Naik was running late, or at least the MA who was leading all the patients in... that would be Maureen, one of my favorites. We chatted a bit and she asked how I was doing. She said that I looked very good. We finally got into the room and got all situated. Then Dr. Naik came in. I zipped my cami down and she said that I was looking really good. Then she said that she didn't have the final pathology report back, but she did have the preliminary report. She said that she took out 16 lymph nodes. Of those 16, 15 came back clear, cancer free. One lymph node did come back positive, however, there were scant cancer cells in that node. As for the breast, the margins were clear, meaning that they got all the cancer out. It was music to my ears. So here's my thought... while I don't know if they got all the cancer out of my lymph node in the clavical area, I am HIGHLY certain there's no cancer there. The reason, the lymph nodes under my arm... there were several involved at the peak of my cancer. Now there was only one, and that one wasn't totally infected with the disease. That leads me to believe that there's no cancer in the one in my neck area. I can say with high confidence that I am cancer free for the moment. Next on the list... radiation! :)
We did talk about my arm - left arm. It's a bit sore under my arm near the armpit and as I try to extend it outwards, it hurts like the dickens. I did some research online and I think it's Axillary Web Syndrome or cording. Here's a sort of quasi definition of it:
"Researchers are still studying what exactly makes cording happen. Some experts believe that the surgery to the underarm and chest area traumatizes the connective tissue that encases nearby bundles of blood vessels, lymph vessels, and nerves. This trauma leads to inflammation, scarring, and eventually hardening of the tissue. This hardening can spread down the fibers of the connective tissue, which causes the cords to form."
So now I have a referral to see a physical therapist after I get the drains taken out. It's a temporary thing, so I am not too worried about it. However, there have been studies that show that it may increase the risk of lymphedema where my arm could swell up. Ho hum. Such is the life of a breast cancer patient.
As we were leaving today, the MA, Maureen, said that Brad was the world's greatest husband. I agree. Without his support I could not be where I am today. He has shown up at every single appointment with me (well the very important ones) and he went to every single chemo sucky appointment. I couldn't have asked for a better hubby! Thanks.
I also want to thank all my wonderful family and friends and even those I don't know. Without your prayers and constant support, I wouldn't have been as positive through this. I truly mean it.
To celebrate today's news, I took Brad out to Taco Bell! Yum yum! :)
A special thank you to Natalie, Jay, AJ and Trevor for the beautiful flowers and the wonderful Healing in Comfort shirt. I love the shirt... it's so nice and comfy and has a place for 4 drains! Ha! Thanks for the influx of cards. Kris, thanks for the celebratory care package. The girls love their tiaras. I can't wait to slip into my bathing suit cover up. March is just around the corner! ;)
Tuesday, June 19, 2012
Day 157 - Home Sweet Home!
So I am finally home after a long stay at the hospital. I am so happy to be home. I feel like I am on the road to recovery. Every day I can do more and more stuff.
First to catch you up on the now. I am not taking any pain medication. My last pain meds were taken on Sunday at 3pm. So I have a full prescription of oxycodone. :) I am still on my "soaker hose" drip style pain medication which is constantly being infused into my breasts... or where the real ones used to be. I am fully mobile on my own two feet. I can get up and down out of bed and out of a chair. I can sit on the toilet with ease and get off of it with ease. My bowel functions have been normal... more about that later. I still need to take a shower. I must be somewhat stinky by now. My appetite is slowly increasing. I'm working on my range of motion and my exercises that I have been instructed to do over the next few weeks. I do believe that I am now over the proverbial hump. This mastectomy has, yes, been life changing... but not life changing the in the effects of my life has changed. My kids still love me and see nothing different. My husband still loves me and still gets upset and mad at me. I am still the same me. Nothing has changed on the interior and that's what makes me who I am. Only the exterior has changed and really, it's not as bad as I thought it was going to be.
So let me start with Friday. Some of you may already know a lot of the particulars, but many of you don't... so I will clue you in. I am sorry that this has been delayed. I wanted to post more... but Friday was a cluster, Saturday was a little better... but all I could muster up was texting. Sunday I felt awful, but I did manage to post! And yesterday I was too busy trying to get out of the hospital... and you'll find out why it was so difficult to do so. So, sit back and enjoy the reading... as I am in my warm comfy bed with my legs curled up underneath me with my laptop... well on my lap. :)
Friday, June 15 - Booby Day!
We left for the hospital at around 530a. We hit no traffic and if anyone lives around Portland, getting to OHSU can be a pain the rear. It was nice sailing through some of the lights without having to wait for PSU student pedestrians. We parked the car and got to the admission desk at about 6a. We looked in the waiting room and who did we see??? We saw Bill and Evelyn sitting there waiting for us. That's Brad's parents. They said that they weren't coming until 9a when I would already be under and hopefully well underway. The day surgery admission was packed already. I couldn't believe it. We had to wait to get checked in. My name was called and we got all the paperwork taken care of. At around 630 they called us to walk back the the surgery waiting area. (Wow, this is making my stomach all bubbly and nervous!) They brought us down to the curtained area where I would be waiting. It was the same exact bed that I was at when I had my port placement. I stripped down to practically nothing... I had a huge gown on, hospital slippers and my hat. I wanted to keep my head warm while I waited. It took forever for someone to come in to start on anything. The first person I saw was Dr. Thakar, the plastic surgeon. She marked me up... gave her guidelines to where my boobs normal are. Then she went over some stuff in a packet she had given to me previously. I asked some questions and then she was gone. Next who came in... I think was the anesthesiologist. It was the same dude that was going to be the anesthesiologist for my port placement. Crazy. Then he left. Next came the nurse anesthesiologist and she went over some things that she would be doing. She would be giving me some relaxing stuff and then when I was out they would be putting a tube down my throat and giving me my general anesthesia. Fantastic. Next Dr. Naik swung by. I asked her a couple of questions... something about lymph nodes and how they would be taking my port out... would it be through my scar or through the breast. She said that it would be taken out through my breast and she wouldn't have to go through my scar. Brilliant! By that time everyone was running behind. The nurse anthesiologist couldn't believe that an IV line hadn't been started. They tried to get one in and couldn't get on in my arm... well duh, I haven't hydrated myself. In addition, the veins on my right arm are very tiny. So someone finally got an IV in on my wrist - the underside of it. At this point I was getting anxious because of all the people coming in and out and the fact that they couldn't get an IV line in and we were already running late. That made the tears start to flow. Once the IV was in, the nurse anesthetist pumped me full of some relaxing medication and I felt so much better. I just closed my eyes and sort of waited. I don't even remember waving good bye or kissing Brad good bye. But he said I did. The rest... well... is history.
I woke up around 2ish... at least that was the time I actually came to and opened my eyes and looked at the clock on the wall. I felt real sluggish. But glad that I was on the other side. My chest hurt and it hurt to breathe in. I drifted back to sleep, but I could hear everything that was being said. I do recall the nurse who was looking after me that they put a catheter in me and got 300mL of pee out of me before being done. So I did have a catheter! Aha! Oh well. At least I knew that I wouldn't pee in bed. I think it was around 230 or 3 that they decided I was stable enough to get wheeled to my more permanent room. They cleared my drains... 30 for the axillary drain, 50 for the breast drain and 55 for the right one. I made sure that Brad would be the only one there escorting me to my new room. He met me outside the recovery room. It was nice to see him. Then they took me to my room in the main hospital. I was supposed to be in Kohler but for some reason they were all booked up. My first room was a shared room. I was supposed to get a private room. Nevertheless, it was shared room in the corner with no window! Brad wasn't too happy. To make a long story short, he had to call Brooke, the nurse navigator who got in touch with Dr. Naik who got in touch with bed control to fight for a private room. There wasn't even a chair in the room where Brad could sleep. They told him that he would have to sleep in the waiting room. Um, I could barely talk and move. What if I needed help with something? I wouldn't be able to do it. While Brad fought with bed control, Dr. Thakar came in and said that everything looked good and the surgery was a success. She said that Dr. Naik had to take a little more skin from my left breast (which I figured would happen since the tumor was so close to the skin) and she filled the tissue expanders with 100mL of saline. Not a bad start. I guess the right one could have been filled up bigger because there was more tissue and it was the non affected breast. Then Dr. Naik came in and said that everything went well. She talked with Brad and said that she would do her part with bed control. Finally the nurse came in and said something about where Brad was and that there may be a room... I didn't really know what was going on... but I did have my cell phone... so I called him and told him to come back. He did and did what he needed to do. I was coherent enough to text some friends... but my spelling was awful. Sorry!
At around 7, I think, I finally got the okay that a new private room was available for me. They started wheeling me out of the shared room and I got sick. I threw up three times into a bucket. It was just water, but nevertheless, I threw up. It didn't really hurt my chest. They stopped me in the middle of the doorway because they wanted to raise my head up. But I had done the deed. Then they got me to my room where I stayed for the remainder of my stay.
I did manage to pee that first night. That was a nightmare. But I had to go bad and I didn't want a bed pan. The nurse helped me as well as Brad. It was a gradual process to get me half sitting up, to sitting up, to dangling my feet over the bed, to standing up, to walking slowly to the commode. Then I sat and peed! Hooray... then it was back to the bed. That first night I got up several times with the help of the nurse and Brad. It got easier each time though. I am proud that I didn't need a bed pan.
Saturday, June 16
Boy do I really remember Saturday? All I remember is that all through the night the nurses and CNAs kept coming in to bother me to take my vitals. The CNA, Irene, was awful. She tried taking my temperature under my arm - the arm with the stitches under it without first asking. We told her NO! I just had surgery under that arm and to not to touch me there. Then she couldn't figure out the drain set up. What did it really matter? Lord have mercy. She kept me up for 20 minutes while she tried to figure out the drain crap.
Saturday morning, Dr. Thakar came in bright and early doing her rounds at 7a. She asked how I was doing. I told her I was doing good. Dr. Naik also came in to do her rounds as well. She was the oncall surgeon for the weekend. I also got to see plenty of "junior" doctors - the fellows and residents. They all wanted to see me. I ordered breakfast but didn't get much down. Most of it went to Brad. He ate my blueberry muffin. I got my first antibiotic and another dose of my iv form of pain medication. Soon after that I threw it up. We kind of figured that it might be the pain meds that may be making me sick... that I needed to eat something with it. Saturday was really peppered with napping, medication, napping and watching TV. I really don't remember much of it. Nor do I care to. I do remember that I did get a first look at my chest. I didn't know what to expect. It wasn't as horrible as I thought it was going to be. I thought I would look and start to cry and miss what I had. But I have come way to far to miss my boobs. I saw little boobies and a whole lot of stitches which will give me a great scar for the rest of my life. I was kind of shocked at how long the scars are. The one on my left side goes from where the nipple used to be all the way to under my arm... well... a little bit under my arm. The one on the right goes from the center to the edge of where my boob would end. So they are a bit longer than I expected. Hmm... something I might ask the surgeons as to why they seem so much longer. But maybe it's just perception. There are no dressings on my scars. They are covered with this stuff called "dermabond" which makes them water proof. The only dressing is over the drains. I hate drains. They hurt and are uncomfortable when the tubing shifts the wrong way. I know they are a necessary evil, but they suck. Literally.
I am a bit weary right now... more like my fingers. I'll catch you up with Sunday and Monday's antics a little later... :) Also, I am hungry. I smell lunch downstairs and my tummy is grumbling.
First to catch you up on the now. I am not taking any pain medication. My last pain meds were taken on Sunday at 3pm. So I have a full prescription of oxycodone. :) I am still on my "soaker hose" drip style pain medication which is constantly being infused into my breasts... or where the real ones used to be. I am fully mobile on my own two feet. I can get up and down out of bed and out of a chair. I can sit on the toilet with ease and get off of it with ease. My bowel functions have been normal... more about that later. I still need to take a shower. I must be somewhat stinky by now. My appetite is slowly increasing. I'm working on my range of motion and my exercises that I have been instructed to do over the next few weeks. I do believe that I am now over the proverbial hump. This mastectomy has, yes, been life changing... but not life changing the in the effects of my life has changed. My kids still love me and see nothing different. My husband still loves me and still gets upset and mad at me. I am still the same me. Nothing has changed on the interior and that's what makes me who I am. Only the exterior has changed and really, it's not as bad as I thought it was going to be.
So let me start with Friday. Some of you may already know a lot of the particulars, but many of you don't... so I will clue you in. I am sorry that this has been delayed. I wanted to post more... but Friday was a cluster, Saturday was a little better... but all I could muster up was texting. Sunday I felt awful, but I did manage to post! And yesterday I was too busy trying to get out of the hospital... and you'll find out why it was so difficult to do so. So, sit back and enjoy the reading... as I am in my warm comfy bed with my legs curled up underneath me with my laptop... well on my lap. :)
Friday, June 15 - Booby Day!
We left for the hospital at around 530a. We hit no traffic and if anyone lives around Portland, getting to OHSU can be a pain the rear. It was nice sailing through some of the lights without having to wait for PSU student pedestrians. We parked the car and got to the admission desk at about 6a. We looked in the waiting room and who did we see??? We saw Bill and Evelyn sitting there waiting for us. That's Brad's parents. They said that they weren't coming until 9a when I would already be under and hopefully well underway. The day surgery admission was packed already. I couldn't believe it. We had to wait to get checked in. My name was called and we got all the paperwork taken care of. At around 630 they called us to walk back the the surgery waiting area. (Wow, this is making my stomach all bubbly and nervous!) They brought us down to the curtained area where I would be waiting. It was the same exact bed that I was at when I had my port placement. I stripped down to practically nothing... I had a huge gown on, hospital slippers and my hat. I wanted to keep my head warm while I waited. It took forever for someone to come in to start on anything. The first person I saw was Dr. Thakar, the plastic surgeon. She marked me up... gave her guidelines to where my boobs normal are. Then she went over some stuff in a packet she had given to me previously. I asked some questions and then she was gone. Next who came in... I think was the anesthesiologist. It was the same dude that was going to be the anesthesiologist for my port placement. Crazy. Then he left. Next came the nurse anesthesiologist and she went over some things that she would be doing. She would be giving me some relaxing stuff and then when I was out they would be putting a tube down my throat and giving me my general anesthesia. Fantastic. Next Dr. Naik swung by. I asked her a couple of questions... something about lymph nodes and how they would be taking my port out... would it be through my scar or through the breast. She said that it would be taken out through my breast and she wouldn't have to go through my scar. Brilliant! By that time everyone was running behind. The nurse anthesiologist couldn't believe that an IV line hadn't been started. They tried to get one in and couldn't get on in my arm... well duh, I haven't hydrated myself. In addition, the veins on my right arm are very tiny. So someone finally got an IV in on my wrist - the underside of it. At this point I was getting anxious because of all the people coming in and out and the fact that they couldn't get an IV line in and we were already running late. That made the tears start to flow. Once the IV was in, the nurse anesthetist pumped me full of some relaxing medication and I felt so much better. I just closed my eyes and sort of waited. I don't even remember waving good bye or kissing Brad good bye. But he said I did. The rest... well... is history.
I woke up around 2ish... at least that was the time I actually came to and opened my eyes and looked at the clock on the wall. I felt real sluggish. But glad that I was on the other side. My chest hurt and it hurt to breathe in. I drifted back to sleep, but I could hear everything that was being said. I do recall the nurse who was looking after me that they put a catheter in me and got 300mL of pee out of me before being done. So I did have a catheter! Aha! Oh well. At least I knew that I wouldn't pee in bed. I think it was around 230 or 3 that they decided I was stable enough to get wheeled to my more permanent room. They cleared my drains... 30 for the axillary drain, 50 for the breast drain and 55 for the right one. I made sure that Brad would be the only one there escorting me to my new room. He met me outside the recovery room. It was nice to see him. Then they took me to my room in the main hospital. I was supposed to be in Kohler but for some reason they were all booked up. My first room was a shared room. I was supposed to get a private room. Nevertheless, it was shared room in the corner with no window! Brad wasn't too happy. To make a long story short, he had to call Brooke, the nurse navigator who got in touch with Dr. Naik who got in touch with bed control to fight for a private room. There wasn't even a chair in the room where Brad could sleep. They told him that he would have to sleep in the waiting room. Um, I could barely talk and move. What if I needed help with something? I wouldn't be able to do it. While Brad fought with bed control, Dr. Thakar came in and said that everything looked good and the surgery was a success. She said that Dr. Naik had to take a little more skin from my left breast (which I figured would happen since the tumor was so close to the skin) and she filled the tissue expanders with 100mL of saline. Not a bad start. I guess the right one could have been filled up bigger because there was more tissue and it was the non affected breast. Then Dr. Naik came in and said that everything went well. She talked with Brad and said that she would do her part with bed control. Finally the nurse came in and said something about where Brad was and that there may be a room... I didn't really know what was going on... but I did have my cell phone... so I called him and told him to come back. He did and did what he needed to do. I was coherent enough to text some friends... but my spelling was awful. Sorry!
At around 7, I think, I finally got the okay that a new private room was available for me. They started wheeling me out of the shared room and I got sick. I threw up three times into a bucket. It was just water, but nevertheless, I threw up. It didn't really hurt my chest. They stopped me in the middle of the doorway because they wanted to raise my head up. But I had done the deed. Then they got me to my room where I stayed for the remainder of my stay.
I did manage to pee that first night. That was a nightmare. But I had to go bad and I didn't want a bed pan. The nurse helped me as well as Brad. It was a gradual process to get me half sitting up, to sitting up, to dangling my feet over the bed, to standing up, to walking slowly to the commode. Then I sat and peed! Hooray... then it was back to the bed. That first night I got up several times with the help of the nurse and Brad. It got easier each time though. I am proud that I didn't need a bed pan.
Saturday, June 16
Boy do I really remember Saturday? All I remember is that all through the night the nurses and CNAs kept coming in to bother me to take my vitals. The CNA, Irene, was awful. She tried taking my temperature under my arm - the arm with the stitches under it without first asking. We told her NO! I just had surgery under that arm and to not to touch me there. Then she couldn't figure out the drain set up. What did it really matter? Lord have mercy. She kept me up for 20 minutes while she tried to figure out the drain crap.
Saturday morning, Dr. Thakar came in bright and early doing her rounds at 7a. She asked how I was doing. I told her I was doing good. Dr. Naik also came in to do her rounds as well. She was the oncall surgeon for the weekend. I also got to see plenty of "junior" doctors - the fellows and residents. They all wanted to see me. I ordered breakfast but didn't get much down. Most of it went to Brad. He ate my blueberry muffin. I got my first antibiotic and another dose of my iv form of pain medication. Soon after that I threw it up. We kind of figured that it might be the pain meds that may be making me sick... that I needed to eat something with it. Saturday was really peppered with napping, medication, napping and watching TV. I really don't remember much of it. Nor do I care to. I do remember that I did get a first look at my chest. I didn't know what to expect. It wasn't as horrible as I thought it was going to be. I thought I would look and start to cry and miss what I had. But I have come way to far to miss my boobs. I saw little boobies and a whole lot of stitches which will give me a great scar for the rest of my life. I was kind of shocked at how long the scars are. The one on my left side goes from where the nipple used to be all the way to under my arm... well... a little bit under my arm. The one on the right goes from the center to the edge of where my boob would end. So they are a bit longer than I expected. Hmm... something I might ask the surgeons as to why they seem so much longer. But maybe it's just perception. There are no dressings on my scars. They are covered with this stuff called "dermabond" which makes them water proof. The only dressing is over the drains. I hate drains. They hurt and are uncomfortable when the tubing shifts the wrong way. I know they are a necessary evil, but they suck. Literally.
I am a bit weary right now... more like my fingers. I'll catch you up with Sunday and Monday's antics a little later... :) Also, I am hungry. I smell lunch downstairs and my tummy is grumbling.
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