Today I saw my surgeon for the first time since surgery for a check up. Actually, the bruising has faded substantially, and I'm feeling very well. One thing I have noticed is that when I extend my arm, or twist my wrist (as if to open a door), I get a shooting pain in my arm. This is caused by "axillary web syndrome" or "cording". Axillary web syndrome is a common complication that occurs when there is trauma to the lymph nodes in the armpit--usually after surgery to remove lymph nodes. Apparently the cords are obstructed lymphatic vessels. Axillary webs look like cords, and the symptoms are pain and tightness, and limitation of movement. The cording can be located just in the arm pit, or it can spread down the arm, all the way to the thumb and onto the chest. My cording just goes down the arm up to my hand.
My surgeon has recommended that I get physical therapy to give me better range of motion, and to treat the cording. She mentioned that I do have Stage 1 lymphedema (reversible), and that I should wear my compression sleeve all day, every day. Lymphedema is a condition that occurs when the lymphatic drainage system is impaired to the extent that the amount of lymphatic fluid within a given area exceeds the capacity of the lymphatic transport system to remove it. In other words, the lymph fluid doesn't have the routes to drain, it puddles in tissue, and makes your arm get puffy. I had 14 lymph nodes removed, predisposing me to lymphedema. Hopefully, with the PT, I'll be able to manage this.
It was driven home to me at the radiation center, where the doctor made it clear that I had to protect my arm from: bug bites, sunburn, bumps, bruises, scratches, cuts, and burns for the rest of my life. Any of those things can cause the onset of severe lymphedema.
I'll just have to be careful...
Monday, March 29, 2010
Friday, March 26, 2010
This is getting ridiculous! 3/26/2010
On Tuesday, as I was finishing up my marathon chemo session, I was given 2 appointment cards. One was for my next chemo session on April 13th. The other was for another blood draw to determine Coumadin levels for today. In addition, the second card showed that I had an appointment with the Nurse Practitioner in the Oncology office right after today's blood draw. I asked why I needed to see Dottie, but was told that that was just what Dr. Brown (my onc) had ordered. Okey dokey...
So today I haul myself in for another blood draw. The poor nurses there are at a loss as to where they can stick me that isn't bruised, clotted, or in danger of causing lymphedema. But, champs that they are, they got the blood draw they needed. I trotted upstairs to the oncology office, as requested for my appointment. Within a few minutes, I was brought in, had vitals checked, etc. Then Dottie came in and asked "Why do you have an appointment today? All you needed was a blood draw for Coumadin levels."
Are you kidding me? This cost me a copay? And insurance paid the balance for nothing?
Then there's the issue of my time...
So today I haul myself in for another blood draw. The poor nurses there are at a loss as to where they can stick me that isn't bruised, clotted, or in danger of causing lymphedema. But, champs that they are, they got the blood draw they needed. I trotted upstairs to the oncology office, as requested for my appointment. Within a few minutes, I was brought in, had vitals checked, etc. Then Dottie came in and asked "Why do you have an appointment today? All you needed was a blood draw for Coumadin levels."
Are you kidding me? This cost me a copay? And insurance paid the balance for nothing?
Then there's the issue of my time...
Wednesday, March 24, 2010
Port issues 3/24/2010
Yesterday was Herceptin and blood draw day. Since surgery is done, I have been able to resume taking Coumadin, a blood thinner (taken to prevent further blood clots from forming in my body). I still have not reached a therapeutic dosage of Coumadin, and the latest instructions I had was to take 17.5 mg of Coumadin until yesterday's labs. When I have a chemo treatment, I typically have an appointment with the doctor as well. That appointment was nice and early (8:40)--presumably early enough for me to get labs, see the doctor, get the Herceptin infusion, and be out the door before noon. Not so fast....
The labs and doctor's appointment went as planned, and I was ready for chemo by 9:30. My attending nurse had planned ahead and had the drip ready for me. All she had to do was to access the port (stick the needle in), make sure the port was not blocked and connect me up to the drip.
After the nurse puts the needle in the port, she typically flushes the port with Heparin, an anticoagulant that cleans out the port to make way for the drugs. After the Heparin goes in, the nurse then draws back on the syringe creating a suction that should draw blood through the port. It's a confirmation that the port is completely open. It wouldn't be good to be putting chemo drugs into a port that's plugged up.
The problem came in the blood return phase. The nurse just couldn't get any blood return, an indication that the port was plugged. Since this was not the first time this had happened, I knew the drill: get up and move around, bend over, raise my arms to see if that would coax the blood back into the syringe. No luck. Next came the Cathflo--a drug to dissolve the coagulation that might be blocking the port. One problem--you have to wait 1-2 hours after administering the Cathflo to allow it time to work. OK, I thought, no problem. Watch a little TV on Hulu. By 11:30, we were ready for another try at a blood return. No luck. Another dose of Cathflo. Another 1 1/2 hours of waiting. More Hulu. Another try at a blood return. No luck. Next up is a port study with contrast, a test that shows if the port is actually open or plugged. They inject the port with dye and take Xrays of the port. Results? The port was open and working. Think of a straw going into a flexible tube. If you suck on the straw, the wall of the flexible tube may collapse. That's what was happening with my port and the artery it goes into.
Bottom line? I started the drip at 2:30 and left the chemo center at 4:30. What a waste of a day!
The labs and doctor's appointment went as planned, and I was ready for chemo by 9:30. My attending nurse had planned ahead and had the drip ready for me. All she had to do was to access the port (stick the needle in), make sure the port was not blocked and connect me up to the drip.
After the nurse puts the needle in the port, she typically flushes the port with Heparin, an anticoagulant that cleans out the port to make way for the drugs. After the Heparin goes in, the nurse then draws back on the syringe creating a suction that should draw blood through the port. It's a confirmation that the port is completely open. It wouldn't be good to be putting chemo drugs into a port that's plugged up.
The problem came in the blood return phase. The nurse just couldn't get any blood return, an indication that the port was plugged. Since this was not the first time this had happened, I knew the drill: get up and move around, bend over, raise my arms to see if that would coax the blood back into the syringe. No luck. Next came the Cathflo--a drug to dissolve the coagulation that might be blocking the port. One problem--you have to wait 1-2 hours after administering the Cathflo to allow it time to work. OK, I thought, no problem. Watch a little TV on Hulu. By 11:30, we were ready for another try at a blood return. No luck. Another dose of Cathflo. Another 1 1/2 hours of waiting. More Hulu. Another try at a blood return. No luck. Next up is a port study with contrast, a test that shows if the port is actually open or plugged. They inject the port with dye and take Xrays of the port. Results? The port was open and working. Think of a straw going into a flexible tube. If you suck on the straw, the wall of the flexible tube may collapse. That's what was happening with my port and the artery it goes into.
Bottom line? I started the drip at 2:30 and left the chemo center at 4:30. What a waste of a day!
Friday, March 19, 2010
May 17th! 3/19/2010
Yesterday I visited the radiation center to get my body mapped out for the positioning of the radiation beams. The technician applied tape with soldering wire affixed to it in a perimeter around the breast to delimit the area that will be radiated. Then he took CT scans of the area. I must say that it's an interesting process, albeit one I wish I never knew about. I now have 4 tattoos (just little blue marks) that will help them set up radiation exactly where they need it to go.
I also received the schedule for radiation, that has me finishing up on May 17th. Disregarding herceptin infusions every 3 weeks til September, I should be all done treatment on that day!
My hair is starting to come back in, and looks like baby bird fuzz...
I also received the schedule for radiation, that has me finishing up on May 17th. Disregarding herceptin infusions every 3 weeks til September, I should be all done treatment on that day!
My hair is starting to come back in, and looks like baby bird fuzz...
Monday, March 15, 2010
Liberated 3/15/2010
Hallelujah!! Got the last drain out this morning, and I do feel liberated! It felt so good to be able to get back in the gym, and then take a GLORIOUS shower--not a half or three-quarter shower, but an over the head and shoulders shower. Like the song says: "Don't it always seem to go, that you don't know what you've got til it's gone...."
Friday, March 12, 2010
Onward! 3/12/2010
Just got the pathology back from the second surgery (last Friday). After reading through all the "scientific speak", I find that the surgeon was able to get clean margins on this cut. So I won't need another surgery to remove more tissue.
At this visit to the surgeon's office , I had hoped to have not only the Japanese squeeze torture wrap removed, but also both drains. Not so fast... the PA attending me wanted to leave one drain in for the weekend to make sure that there was no fluid build-up in the wound. So I still have one drain attached.
Without the pressure wrap on, I was able to see myself for the first time since surgery. Boy, if I had a hard time finding a comfortable and well-fitting bra before, that's going to be a MAJOR issue now! Seriously, I feel pretty well, and am just sore and black and blue (BIG TIME) from the 3 surgeries.
Next up is a meeting with the radiation center doctor next week to map out my treatment there. They will tattoo me at the exact spot where the beam needs to hit. I'll have 28 treatments, once daily (M-F). Looking ahead, I should be done with that by mid-May at the latest (but who's counting?). Is that a light at the end of the tunnel I see?
At this visit to the surgeon's office , I had hoped to have not only the Japanese squeeze torture wrap removed, but also both drains. Not so fast... the PA attending me wanted to leave one drain in for the weekend to make sure that there was no fluid build-up in the wound. So I still have one drain attached.
Without the pressure wrap on, I was able to see myself for the first time since surgery. Boy, if I had a hard time finding a comfortable and well-fitting bra before, that's going to be a MAJOR issue now! Seriously, I feel pretty well, and am just sore and black and blue (BIG TIME) from the 3 surgeries.
Next up is a meeting with the radiation center doctor next week to map out my treatment there. They will tattoo me at the exact spot where the beam needs to hit. I'll have 28 treatments, once daily (M-F). Looking ahead, I should be done with that by mid-May at the latest (but who's counting?). Is that a light at the end of the tunnel I see?
Monday, March 8, 2010
Third surgery is the charm? 3/8/2010
It turns out that there was a torn vein in the wound as well as another bleeding vein resulting in a hematoma. That's now fixed (hopefully) and I can expect the pathology from the Friday surgery this week. They sent me home bound tightly around my chest--like I would imagine Japanese breast binding to be. I have 2 drains again.
Not feeling too perky now, so I'll sign off. Love you all!
Not feeling too perky now, so I'll sign off. Love you all!
Latest news 3/8/2010
Ray took me back to the surgeon's office this morning, where it was determined that they have to go back and surgically fix the drains. Yes, it's back to surgery once more. I am checked in and due for surgery at 2:30 today.
By the time we got here, my shirt was soaked with blood. Not good. They wrapped my chest really tightly in a bandage designed to stem the bleeding from the drain attachment to my body.
On the positive side, the fact that the blood wasn't draining properly has caused the surgery side breast to be...well... to be delicate...firm and youthful in appearance. But, alas, that's only one side. The other looks like it belongs to a 58 year-old woman. Damn!
By the time we got here, my shirt was soaked with blood. Not good. They wrapped my chest really tightly in a bandage designed to stem the bleeding from the drain attachment to my body.
On the positive side, the fact that the blood wasn't draining properly has caused the surgery side breast to be...well... to be delicate...firm and youthful in appearance. But, alas, that's only one side. The other looks like it belongs to a 58 year-old woman. Damn!
Clogged drains 3/8/2010
After yesterday morning's drama, I thought everything was taken care of. Silly me! We went grocery shopping mid-afternoon, and on the return, I discovered that the drain (s) must have clogged again because my clothes were all bloody again. I called the on-call physician who advised me to keep "milking" the drains and moving clots along the tubing, and to change the dressing as needed. But even after serveral attempts to unclog the tubing, the bleeding continued. We went to the local ER. Unfortunately the doctor there did not have the background to advise me. So after vitals were checked and a blood draw, they packed us off to the hospital in Nashua where the surgery had been done.
We arrived there at about 8:30. By 10:30, it was determined that the drains were---drumroll-----clogged with clots. The doctor tried to flush one of the drains with saline, and after that, there was no draining at all. The nurse replaced the other bulb and got it to drain acceptably. Bottom line is that I have instructions to go back to my surgeon today.
This morning it appears that the one drain is working, even though I did have some "seepage" overnight.
And I thought that surgery was going to be the piece of cake part of this whole process!
We arrived there at about 8:30. By 10:30, it was determined that the drains were---drumroll-----clogged with clots. The doctor tried to flush one of the drains with saline, and after that, there was no draining at all. The nurse replaced the other bulb and got it to drain acceptably. Bottom line is that I have instructions to go back to my surgeon today.
This morning it appears that the one drain is working, even though I did have some "seepage" overnight.
And I thought that surgery was going to be the piece of cake part of this whole process!
Sunday, March 7, 2010
Minor Sunday crisis 3/7/2010
I woke up this morning feeling pretty good. Got up, went into the bathroom to empty the drains, and did so. One had about what I had expected. The other just had very little. Oh well, made the notes on my tally sheet, and went downstairs. Ray had gotten up earlier, and as I approached my computer, I asked Ray if he noticed anything awry at the wound site. Oh yeah. Apparently the drain had gotten clogged and was not draining, and the gauze, as well as my pajama top were soaked in blood. Uh oh. Called the doctor who walked me through unclogging it, and during the process almost passed out--my blood pressure must have dipped...A quick lie down on the cool bathroom tile did the trick to revive me. Bottom line, it seems to be draining now. Geez--I'll be glad to get rid of these!
Saturday, March 6, 2010
A larger chunk 3/6/2010
I knew that I'd been coming around to the surgical center at Southern NH Medical Center too frequently (3 times in the last 5 months)when the nurses there called me by name...They took a second bite out of the tumor area yesterday, and I have TWO drains now to show for it. And I came away with a SPECIAL bra to hold those drains. Do I define sexy, or what?
Actually, I feel pretty well, except for the scratchiness of the velcro on this surgical bra. I'm pretty sure they don't sell these at Victoria's Secret...
I meet with the doctor at the radiation center on Tuesday.
Actually, I feel pretty well, except for the scratchiness of the velcro on this surgical bra. I'm pretty sure they don't sell these at Victoria's Secret...
I meet with the doctor at the radiation center on Tuesday.
Wednesday, March 3, 2010
2nd time is the charm? 3/3/2010
I heard from the surgeon's office today, and was told to gear up for the 2nd surgery by Friday the 5th. Since the surgeon was out sick today, it is hoped that they won't have to cancel or change anything because of a continued absence. But the scheduler assured me that they would get me in for the second go round next week at the latest.
I went to the gym today for the first time since surgery. It was weird since I still have the drain in. Under my tee shirt it looked like a third boob. I was able to do my regular work out, except for the lifting. I just did exercises to stretch my surgery side as was suggested to me. All was well until I got back into the locker room to take a shower. I found myself in a fit of laughter as my sports bra got somehow twisted up and stuck on my bandages as my arms were over my head, and I couldn't get the damned thing off! Thank god there was no one in the locker room at that point. After I stopped laughing, I was able to maneuver my arm out.
BTW, I'd like to ask all the Blanks and other friends out there to pray for my sister Chris' husband, Frank , (and Chris, too) who will be having cancer surgery on Friday as well. Let's make the circle really BIG!!
I went to the gym today for the first time since surgery. It was weird since I still have the drain in. Under my tee shirt it looked like a third boob. I was able to do my regular work out, except for the lifting. I just did exercises to stretch my surgery side as was suggested to me. All was well until I got back into the locker room to take a shower. I found myself in a fit of laughter as my sports bra got somehow twisted up and stuck on my bandages as my arms were over my head, and I couldn't get the damned thing off! Thank god there was no one in the locker room at that point. After I stopped laughing, I was able to maneuver my arm out.
BTW, I'd like to ask all the Blanks and other friends out there to pray for my sister Chris' husband, Frank , (and Chris, too) who will be having cancer surgery on Friday as well. Let's make the circle really BIG!!
Tuesday, March 2, 2010
Power's back! 3/2/2010
Last night as we were leaving at 7:00 or so to go out to dinner, we noted that our next door neighbor's generator was not running, and that he had lights on. We dashed back inside, threw on the breakers to find that we had power as well. Oh joy!!
At the doctor's yesterday, I discovered that my drain, while empty, could not yet be removed. Apparently, the reason the drain was empty was that it was plugged up. As soon as the plug was freed, it began to flow again. Damn! So I guess I'll have it for a while yet.
I now have an appointment for next Monday to talk to the doctor at the radiology center where I will get radiation. This is the first male doctor I will have talked to in the last several months.
Still waiting to hear about my next surgery.
At the doctor's yesterday, I discovered that my drain, while empty, could not yet be removed. Apparently, the reason the drain was empty was that it was plugged up. As soon as the plug was freed, it began to flow again. Damn! So I guess I'll have it for a while yet.
I now have an appointment for next Monday to talk to the doctor at the radiology center where I will get radiation. This is the first male doctor I will have talked to in the last several months.
Still waiting to hear about my next surgery.
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