Back at Work!

I'm healing really well.

Last Thursday I went and saw Jason Carr and he took my drains out. Since then it's been nice not to have something swinging around. Recovery is slow, but a heck of a lot easier than the mastectomy. I am able to move my arms better. I can reach up and get them out to the side (think cross). Before I couldn't even do that. I don't know if Dr. Thakar loosened up some scar tissue, but my lymphedema seems better. My fingers and hand don't seem to swell - I can really see the veins in my hand. I was told that sometimes the lymphedema gets worse after the surgery. In my case it was getting better.

Last week I also got the all clear sign that there was no cancer in my breast. Dr. Thakar sent tissue samples from my breast (scar tissue) and some muscle tissue to the lab. They dissected it and found absolutely no cancer. So... so far I am cancer free. I am excited. I am waiting for Dr. Munro to release the pathology from my oophorectomy. I have not heard from her... and don't they always say no news is good news?

Today was my first day back at work. It wasn't too bad. I got tired about halfway through. I think I just have a needy and taxing team sometimes. But it wasn't too terribly bad. I have to still watch what I lift. I can't lift more than 10 pounds for three weeks and then I can slowly start to lift things. The scars are healing well. I still have the dermabond on my skin, but that's starting to peel away. I feel like a snake molting! Ha!

I can't remember, but the scopolamine patch... A.W.E.S.O.M.E.!

Oh yes... and I now have the serial numbers to my boobies. It came in the mail... so now I can be identified if I go missing by my boobs!

Until next time...

An Update

Wow! It has been quite awhile since my last post. A lot of things have happened since the beginning of March which was my last post.

So here's what's happening in my life of cancer.

March I finished up with physical therapy for lymphedema. I finally figured out how to keep it at bay. Then on March 13 we left for Florida for the celebratory cruise. It was really nice to get away from Oregon. I liked the change of scenery. We took a red eye to Ft. Lauderdale and thanks to my good friend, Anne, she helped me get our flights there for cheap.

We got to spend some time with my grandmother before boarding our ship. We also got to see my cousins and my uncle while we were there. We had a great time... lots of visiting and lots of just relaxing. On Saturday March 16, we boarded our cruise along with my mom, dad, Karen, Vern, Deanne, Vince and Lilly. So we had a party 11. The trip started off awesome. We had a great room in the middle of the ship. A nice bed and the girls had their own. A great balcony and a view of Grammy and Papa's room a floor above us. But then it all went to heck after our first port - St. Maarten. I will post separately on that. It's a long story... but a quick overview... routine check of our stateroom turned up bed bug eggs - ewww! And then we had to change rooms and get our clothes laundered. It was terrible what transpired after that. We were very eager to get off of the ship following that.

April: April was a good month. I had two doctor appointments. The first one was with the new gynocologist oncologist, Dr. Munro at OHSU. She was great. I really like her. We talked about the surgery and statistics of what will happen after I get my ovaries out. She said that my chances of getting ovarian cancer drop to standard population. That's awesome odds. We also outlined what will happen during surgery. I told her she is not to take out any lymph nodes in that region. She said that if she sees anything she normally takes out the pockets of nodes. I said, no. I absolutely refuse because I already have lymphedema in my arm and I don't want it in my leg as well. I like the fact that she respects my wishes. But I had a really good vibe about her.

A few days later, I had a follow up with Dr. Naik, my surgeon. I was in and out. Everything is looking good with there. No new lumps or areas to be worried about. We also talked about the gynoc. She said that no one has real issues with Dr. Munro but some are not so certain about Dr. Moffitt. I am sure Dr. Moffitt is a good doctor, but I just didn't like her bedside manner. Very abrupt and not empathetic.

Now that I've picked out my gynoc, we can now schedule the final operation and put everything behind us. Trouble is, is that I have two doctors to work with. Dr. Thaker operates Tuesday, Wednesday and Friday. Dr. Munro does her operations on Thursday. Ummm... see a scheduling conflict there??  Ha. So I got a call in late April with the date of May 23. Holy cow! But I want this done and I have to do it then. My surgery was set for the afternoon... 2.30p with check in at 11.30a Then a day or two later, I got another call stating that there was a conflict in scheduling. And so now my real surgery is first thing in the morning. I have check in time at 5.30a with surgery scheduled to start at 7.30a. I'd rather have that surgery time. I won't be able to eat after 11.30p the previous day. But that's okay. I like it because I am not supposed to eat any food. Only clear liquids. I'm going to be hungry. So it worked out for the better.

This month has been busy with doctor appointments. Dentist on May 1 (no cavities for me or Amelia!). Yesterday I had a follow up appointment with the radiation oncologist, Dr. Marquez. Everything is looking good there. I kept getting compliments on my hair. They all say it's really cute. Dr. Marquez asked where I was in my surgeries. I told her that I have my last surgeries scheduled for the end of the month. I'll be getting the tissue expanders out and the implants put in as well as the oopherectomy. She said that will be good because it will save money and time (she mentioned that anesthesia is the most expensive in an operation). We discussed Dr. Thaker and how she just saw her the other day. She said that Dr. Thaker has new implants and was throwing them around in clinic. She said that they feel like gummy bears. I said that YES, I know about those. They have been around for awhile in Europe and they are just catching on here in the states. She said that I am going to love having the TE out. I cannot wait! I will feel so much more comfortable. We also talked about Dr. Moffitt and Dr. M also said she's got an interesting personality. That's why I love the doctors I picked. So truthful. Dr. M also asked if I saw my Radiation Therapists - Dan and Linea. I said yes, I did see them. I got a clean bill of health and I left. I don't have to go back to see Dr. Marquez until December. That seems like ages away.

I did see Dan and Linea. They sooo remembered me. We chatted for quite awhile. I also saw Andrea and Rebecca is pregnant! The front desk receptionist also remembered me. She said she saw my name on the schedule and thought "I know her." So we chatted a little bit. It really nice because these visits are social visits. Dan says I have to come see him more often. I said I will - when I am around.

No doctors appointments today as I have jury duty today and tomorrow. Next week I have my pre-op appointment with Dr. Thaker. We'll go over what kind of implants I want. I've got a pre-surgery anesthesia appointment on Thursday with blood draw. Then on Friday I have a ulta-sound appointment so they can take a look at my ovaries. Oh yea, next Tuesday, Elaina has her first dentist appointment. Then it's surgery day! Mom is flying out to help out, as I will be out of commission for a little while and will need help with the kiddos.

Lymphedema

So we're back to the drawing board. I am now being treated for lymphedema. Big boo. I am also being sort of treated for tendonitis. It's a combination between the two. I am now sporting a compression sleeve and glove with fingers. I got it on Wednesday and have been wearing it during the day. I went to the Transitions "store" at Providence Portland. The lady there was so nice. She even threw in a purple tie dye sleeve "on the house." I need to wear the sleeve all day long until I go on vacation. Then she said that I could wear it whenever I need it. Of course I will wear it on the plane. Hopefully it will do the trick.

Today at Physical Therapy I told my therapist that my hand looks even more swollen. She said the fluid is pooling in my hand and the glove may be loose. So now I have a piece of foam inside it. It feels better. I feel like the fluid can now move out of my fingers and out of my hand. We shall see. I have another appointment on Monday and then a follow up on Tuesday when I get back.

The worst part of the glove - washing your hands in the bathroom after going pee. Most inconvenient. Ah the littlest and stupidest things.

Oh and did I mention that I don't have an appointment with the gynoc until April 17! They only schedule these types of appointments once a month. Of course the once this month happens when I am on vacation. Oh well, I guess I'll schedule my surgery in later April early May.

A new diagnosis

Had my first physical therapy treatment yesterday for my hand swelling. It is edema, but my PT says that she thinks it's tendonitis rather than lymphedema. Wahoo! The swelling is not bad (she took lots of measurements of my arm, hands and fingers). My fingers were swollen. My wrist was a bit bigger compared to my right hand. When I relayed the symptoms to her and how the pain is radiating up my lower arm right along a tendon, she diagnosed me as tendonitis. So now I've got to do stretches. In addition, they gave me a treatment called iontophoresis. I receive medication via an electric charge. So far it's helping in the area that it was applied. The medication is absorbed directly in the affected area. Today I noticed the pain is less. In addition, the swelling in my middle and index fingers are a little less swollen. They're still swollen, but it has gone down. The swollen fingers may be a direct side effect of the tendonitis. Pray that it's not lymphedema.

Nevertheless, I am getting a prescription for a compression sleeve and glove. I will wear it when I fly next month to Florida. I don't mind. I would rather prevent lymphedema.

So that's it. My next appointment is next week. :)

Grrr.... lymphedema

Grrr... I am so mad. I thought that maybe God would throw me a bone. But instead He teased me with it. Now I've been diagnosed with lymphedema by my primary physician. I've been referred to a lymphedema specialist. I am now waiting for them to call me. I'm upset. I am mad. I am pissed. I don't know why. It's not my fault that I have swelling in my hand. I guess I am mad because I didn't catch the cancer early enough. If I had caught it months earlier, then maybe it wouldn't have travelled to my lymph nodes and I wouldn't have had an axillary dissection. Grrr, still I'm mad. This is going to be chronic. I was being so careful too. But my hand is swollen. I try and kid myself that it isn't, but it is. You can see it mostly around my knuckles.

I won't die from lymphedema, but it can be uncomfortable. I'll have to most likely wear compression sleeves when I fly and do exercises... I think that I have caught it early enough. I just hope that I can get in sooner rather than later so it can be reversed. :)

My doctor is going to call my oncologist to see if it could be a blood clot. He says that sometimes it could be a clot. So I may have to get an u/s of my veins. I doubt that I have a blood clot. There's no pain or shortness of breath. Hmmm...

Other than that... not much to report. I will be calling for my reconstruction appointment in March. Dr. Thakar had me down for a March surgery. I told the scheduler that I was going on vacation and didn't want to do it until afterwards. So the April schedule opens in March. Plus I need to find a new gynoc for the oophorectomy since I want to do both of them at the same time. So things are moving foward....

Day 211 - Phantom Itch

No radiation today. It's the weekend! Hooray! So no fun fact either.

This is something I meant to write about before... the phantom itch. Lately I've been get the urge to itch my breast (before radiation). I'd go to scratch the place where I think the feeling is coming from, scratch it and nothing would happen. There would be no relief... so in order to get the relief I am seeking, I would have to feel all around. Sometimes I would find the place that is actually itchy. Other times I would just leave it alone. For instance, I feel like I have an itch on the top of my breast, but I'd find that I find relief right where my cleavage is. Ha! I was told that this is expected. As my skin and body heals from the mastectomy, the nerves are growing back. However, the nerves may not grow back to the original spot but rather in a distant spot. It's an odd feeling. As for feeling in my boobs, there's feeling around the edges, but as you move further towards the center where my nipples used to be, I don't feel anything. I can feel if you press down, but that's because I feel the tissue expander pushing down on my chest wall. But I won't ever get feeling there. I also have no feeling on the back of my left arm due to the axillary dissection or under my arm. Small price to pay.

Oh yes, last monday when I went in for my physical therapy session, I asked my therapist if I can enjoy hot tubbing. There are mixed reports of what you should do. She suggested that since I do not have lymphedema, but I am at risk, that I can go in as long as I keep my arm out of the water. So we'll see!

P.S. Do you like the facts??? I know my radiation techs are really getting into it! :)

Day 178 - Axillary Web Syndrome or Cording

Had my first physical therapy treatment yesterday for my cording. It was a good appointment. I got there shortly before one and was with the PT by 1.10. She went over my paperwork, asked me a few questions about pain and when I recognized the cording. I told her it was about 5 days after surgery. I told her that the cording was getting worse as time went by. Following the question and answer session, the PT measured my range of motion. My right arm is 113 degrees if I lift straight up in front of me. My left arm is 80 degrees. I had to stop because of the cording. Putting my hand behind my back was not an issue. My ROM was great. Following that, it was time to get busy. I got on the table and the PT started massaging the cords. She felt two of them. I asked her what exactly she was doing. She says that the massage is basically stretching the cord in a "C" shape, "S" shape and other manipulations. She would hold the cord that way. It felt really good, like a good stretch. It didn't hurt at all. It felt really nice. I asked her if she knew what caused the cording. There really isn't anything definitive. However, they believe that the cording is an inflammatory response to the removal of lymph nodes. What I didn't understand before was that the cords are actually channels that were already there in place where the lymph fluid drains. I just didn't feel the cords. So now they're inflammed. You can see one of the cords right in the bend of my arm. The PT manipulated my cords for about 1/2 hour. She could feel some tight ones in the back of my arm, but she wasn't as concerned about them. I did tell the PT about the "popping" of the cord and if it hurts. She says, yes it does, but it is brief and doesn't happen very often. At the end of the appointment, she said the cording was responding well to the therapy. I did feel like I could move my arm better. And today, it's not as bad. I go to PT three times a week now. Fun times. I also get to do exercises at home! My PT sent me home with several for me to do. In addition, I have exercises to do to make sure my scar tissue doesn't get hard and remains supple. Perhaps I'll get my husband to do those exercises on me! Those exercises include rubbing in small circles above and below the scar line.

My therapist also discussed lymphedema. I didn't know that there were stages to the disease. Stage 1-3. The first stage is reversible. Basically you feel something different about your arm... such as it feeling heavy or achy. You may not notice that it's starting to swell. The next stage is where you notice swelling, but it's reversible with therapy and manual manipulation. The last stage is where you've let it go and it isn't going away. But treatment is still the same. According to the National Cancer Institute, breast cancer patients rarely see Stage 3 lymphedema. Phew!

I think it's time to get another fill! There's a spot near my sternum that hurts. So far that has been the indicator that it's time to get a fill. Once I get my tissue expanders "inflated" the pain goes away. I asked Jason and he seems to think that it's because of the double material near the port. Nevertheless, I get my next fill on Thursday at 12.30 - 100cc's. I'll tell you how that goes. I got a call from the reconstruction office this morning. Jason had some sort of foot surgery and they're trying to space out his appointments. Fine with me. I don't have to leave work so early now and it's closer to my PET scan. Did everyone take notice of my ticker to the right?? My goal of 420cc's. You can track my progress! Hahaha! Looking at my boobies, I would guess that my size is about a B cup. I am right about where I was before I had kids. So about a 34B. Just so you know what the tissue expanders feel like, they're not very comfortable. There's that double material near the port that gets annoying. (see post Day 166) The expanders also "bleed" over on the sides by your arms, so sometimes my arms are rubbing against them. In addition, when I sleep on my side, I can sort of feel them shift... it's more of the liquid inside shifting. The tissue expanders are definitely heavier than the saline and silicone implants. The expanders are made with heavier material. Looking at my boobs is really interesting. They look a little flat in the front, rather than round. But when you put a shirt on, it looks fine. It's just nice to have boobs again! I'm wearing tighter shirts now.
Until next time...

How to Prepare for a Mastectomy

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.

Day 174 - Fill 'er up & Radiation Therapy

Another week has come and gone. I've completed my first full week at work. I'm glad that's over because I was soooo busy it was insane. But now the weekend is here.

So what happened? Worked Tuesday. Off Wednesday for 4th of July. We went to our neighbor's house, Jennifer and Dave. The girls had a great time playing in the pool (kiddie) and going down the slip and slide. We couldn't get them out of the water. Then that evening we set off smoke bombs and popped those snap things on the sidewalk. I was out by 9pm or so because I had to work the next morning at 4a! Thursday it was work until 12.15p and then it was to OHSU for two doctor appointments.

I got to the Center for Health and Healing around 1.35p. As I was turning the corner to go down the street to get to the parking garage, I "nearly" ran into Tracey and former co-worker Mark. Apparently they were on their way to meet up with a few doctors to do a piece on Dr. Oz coming to OHSU for heallh screenings. Then it was up to the seventh floor to wait for my appointment with Dr. Marquez, the radiation oncologist. That was a fiasco. Dr. M was running late and at 1.10, she called and said that she'd be 15 minutes late. I had an appointment with Jason from Dr. Thaker's office (reconstructio) at 1.40 for a fill. So both Brad and I sat around until about 1.30 until Christine the nurse navigator called down to Dr. Thaker's office and said that she was sending me down. She decided to pull the trump card and say it was fine for me to go to my other appointment because Dr. Marquez was running late. So I left to go see Jason. He said that everything is healing just fine and we could do a fill. We ended up doing a 50cc fill. I could have gone and done 100cc's. But 50 was just fine for this visit. I have three more fills... next week I will get 100cc's and then the following two I will get 75cc's. As the saline was pushed in, I could see my boobies grow bigger. They are now about the size of pre-babies!

Then we raced back to the original appointment with Dr. M. She didn't end up coming into my room until sometime after 3p! But she was worth the wait. I like her a lot. We discussed the course of treatment. She is planning on radiating the left chest, under the arm and also the supraclavicular lymph node. She talked about doing radiation closer to the sternum because the tumor was a little bit on the right side of the breast. That was something I had not anticipated. But it's more for preventative measures. I did find out that for radiation, she suggests women have the supraclavicular area radiated because she sees the regeneration of cancer there most often. I say radiate what you need to. I don't want to do this all over again. The downside to the radiation of nearly the whole left side of the chest is that I will have a lung decrease capacity of about 20-30%. The reason being is that they are moving the radiation field over the lung and the nodes they have to reach are deeper. So that means that the lung will undergo more scarring and damage. She says that it will be most noticible if I am an athlete. So I guess no more marathons for me! I also am at an increased risk of lymphedema. It goes from about 5% to 15% after radiation. She said that I will have to watch for the onset of it and when I notice swelling, to go in and see a physical therapist. The radiation will last for 28 sessions, or 5 1/2 weeks. It will last about 30 minutes and it will be five days a week. I said, "Hooray!" I thought I would be going 6 1/2 to 7 weeks of radiation. She wants to start after I get done with my fills. That will be in three more weeks. And it will be perfect timing because it will be 6 weeks post-mastectomy. Perfect timing. Dr. M says that I'll have reconstruction about 6 months after treatment. I beg to differ.... we'll see what Dr. Thaker says. The side effects of radiation: burns (redness, turning into a tan) and fatigue. That's okay. I did mention that I have a wedding to go to... and she said that I will be red from where they radiate the breast. I said that's fine. I just want my hair. :) She laughed as well as her fellow and a medical student who was shadowing her. I like her. I like that she gives the upside of things and the concerns. She was very comprehensive and I knew that she looked at my file because she was talking a lot about it.

Next week's agenda: Monday I have a physical therapy appointment for my cording. Thursday I have my next boobie fill. And then I have a follow up PET and CT scan. I asked for a follow up because I wanted to know if the cancer was gone from the node in my neck. Dr. M said that she will look at that scan to see if there's any cancer left in that node. She said if there is, then she'll blast that area with more radiation. She will also see if it truly is necessary to do the radiation towards the sternum. My inclination is to do it regardless because I don't want this awful disease to come back. Oh yes, she also said that in the pathology, they found that there was cancer in the lymph ducts in the breast?? I think she was referring to the DCIS that they found in the milk ducts. I did ask about the right breast. She said that there was absolutely no cancer on that side and there is no need to radiate that side. Ah and after radiation, she said that the left breast will always look a little odd and won't hang as nicely as the right side. I said, not a problem, as my left boob always looked odd anyway. :)

I think that's about it. Oh, Wednesday morning I woke up with "bed head." It was nice to see bed head again.

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...)

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! ;)

Day 75 - Round 5: New Chemo drug Taxol

Here I am... drip, drip, drip. I have about less than hour for my Taxol drip. Three hours is really long, but not as long for Brad. Sitting in that hard visitors chair... while I have a comfy cushy one that reclines. However, I would not like to have to sit in this chair at all.

*** *** ***

Updated, I am now home. I got into a nice conversation with the couple sitting next time in my last hour of the the drip, drip, drip. We started talking about laptops. They are in the market for one and asked how much I spent on mine and what I had. They said that someone told them to get a HP. Brad and I kind of laughed at that because Brad's brother and dad had an HP that crapped out on them. I told them that they can get a Dell like mine for 549.99. They were shocked. I told them that I have 4GB of memory and it does all the stuff I like. She does more word processing and I said that it might be best to upgrade to something like Microsoft Office. I don't have it on the computer... I have what's installed. In addition, they want to Skype. I told them that I have a built in camera and it does the trick. I even showed them the pictures that I took with it and they were surprised as to how clear it is. I think I've got them hooked on a Dell. After that we started to talk about Chemo and why were were there. She first had breast cancer about 20 years ago and has recurrences since then. Makes me nervous. But she's a very upbeat woman and she's living with it. She is also dealing with lymphedema. Her whole left arm was swollen. She said back in 1992 she had a mastectomy and they took out 17 lymph nodes! 17! But that was the standard operating procedure back then. So she doesn't have any nodes to push on or get the lymphatic system going. Eva is her name. I think her husband's name is Rick. In any case, I think that with me they are going to take out half a dozen. I think that's better odds if I get lymphodema it won't be as bad as hers. Her cancer I believe has spread to between the two breasts. It was a beautiful conversation. I liked them a lot.

So back to my treatment.

I got there at 8:45a. At 9, I had my blood drawn. Then it was wait until 9:30. I got to go back into a room shortly around 9:30. Wow! On time. I got several texts... but one of them I was desperately waiting for... a text from Shellie, as she was meeting us in the infusion room. I got that text and she went and picked up some food for us... Subway... cuz I was hungry for a meatball sub. Just as I was placing my order, the Nurse Practioner came in, Sandra. We first talked about side effects from the new medication because this is the first time I was taking the taxol. Side effects include muscle and joint pain, kind of like having the flu, my hair may grow back (wowsers, cool. I have heard about this), neuropathy (where I get tingling in my extremities... this can happen at any time, but she says it normally happens with the 4th dose), finger and toe nails will be discolored (that's happening already) and skin as well (happening already). She said that my nausea should go away and I won't have it. Next on my list was post medications... she said that if I do get nausea, I could take any of my anti-nausea meds as needed. So that's all I have to do. She did say that I will be taking the dexamethasone (steroid) the night before I have taxol treatment from here on out. Sweet! Then I would get my neulasta shot 24 hours after my treatment. Okay, this is doable. Sandra said most women ask why they do the AC first... they say the taxol should be first. I laughed and said that is so wrong, it should be exactly the way it is because then one can look forward to having a good back half of chemo. She agreed. I like her.

I got out of that appointment at 10:04. I had to wait about 15 minutes to get into the infusion room. So they were running behind. I got my favorite nurse, Nicole. I like her a lot. My first order... saline drip. Then the next thing I got... 20mg of dexamethasone, 8mg of Zofran and then a 15 minute drip of pepcid. After that I got a 50mg drip of Benadryl. Ugh. Right at the beginning, Shellie came to visit us baring gifts of food (thanks Shellie!). That was awesome since I was soooo hungry. We talked about work, treatment and kids. Shellie said I looked great for just going through AC and chemo in general. Brad got a picture of us (will post later). I also got a picture of me and Jon which is a guy who is awesome and works there too. I told him earlier that I had a surprise for him... which was Shellie. They talked for awhile. It was nice because there were several people who came up to her and remembered. :) Reminder it's been nearly 4 years since she was diagnosed with breast cancer. Our visit was short, but well worth it. By the time she left, I was getting dizzy and tired from the Benadryl. So I took a half hour nap while I had to wait for taxol. When I woke up, it was time for taxol. They started the drip... I waited up for about 15 minutes, felt no change and went back to sleep. I was tired from the benadryl. When I woke up, I had about an hour and a half left. I went pee and that's when I got a new chemo neighbor. (see above for that) Chemo was finally done shortly before 3p. I was so happy to get out of there. That was a long day. My neulasta shot is tomorrow at 4p. Sweet night.

Got home and mom had dinner cooking in the crockpot. It is so nice not having to worry about dinner. Chicken and artichokes. It was yummy. After dinner, we all did our job with getting the kids in the bath and ready for bed. Now it's quiet and I am able to update the blog.

Brad is now running out to auto repair shop, because my car was starting to shake and shimmy on the way to our appointment. After a call to Chris, they think it has something to do with fuel in my gas take. This stuff that Brad is getting is supposed to dry up the water in the tank. If it's not that, it could be the fuel injector. We shall see.

Tomorrow, I will be going to work. That's something Eva and I talked about. She said that work helps her move on with her life. I said that is the same thing I feel. I don't sit at home and wallow to the fact I am sick. We also discussed in brief about our mortality. It was nice to talk to another person about breast cancer and other stuff. They were very sensitive and knew exactly what to say.

I'll keep you posted with what sort of side effects I have this weekend. Pray and keep your fingers crossed that I won't have the nasties. Oh yes, I forgot, Sandra said that the benadryl medication... they can decrease that dosage if they find I am not having an allergic reaction. That would be good. Less time in the infusion room!

I'm tired now and want to go to bed. Till tomorrow...

and I'll post pictures when I get them uploaded.