Yesterday morning I dropped Alex off at his cross country practice. Can I just stop for a moment and say how amazing I think he is and how proud I am. These kids run 45 - 50 miles per week and he never complains. He loves it. I don't know how he does it but I know that he didn't get that from me! The kids are so encouraging. He got straight A's this past year and has opted to take honors English this year - so proud!
Anyway, on the way home a line from a song from their elementary school popped in my head...This is a day that the lord has made. Let us rejoice and be glad in it. Okay the day was beautiful and I would have loved to be rejoicing...but I guess I was feeling a little selfish...not looking forward to my chemo.
Anyway, all went well as usual. My mom accompanied me this time. My only complaint between round 3 and 4 was that my leg muscles are really getting sore...I'm talking like I feel 90 years old! I'm winded and legs aching after walking up less than 10 steps! It's crazy. I'm ready for that to stop!
I did get to fit in an amazing few days in Mexico with my mom and dad. The weather was GREAT! There was a nice cool breeze. Mom didn't like it too much but I thought it was fabulous. I appreciated it even more when I got back home and the heat was a stifling 90+. I'm hoping that they are going back soon so that I can enjoy it again before my next round. I have only 2 more to go. I guess I should be glad about that! Please keep my Aunt Mary in your prayers. She's going down the same path as me now but just starting out.
Well, time for my nappy! Take care and I love you all!
Jenn
Round 4
Friday, August 27, 2010
Posted by Jenn at 8:17 PM 1 comments
Chemo Round 3
Saturday, August 21, 2010
**Okay I wrote this on 8/7 and had some "technical difficulties" because I was trying to post an video of the elephants that I mention below. I was discouraged because I thought I lost it all and haven't come back until today....
Okay, I've been a total slacker and haven't written a single post since round 2. So, I'm going to start there. It wasn't as eventful as round one - no hospital vacation. I was a good girl and took my meds. I actually found if I took zofran & a vicadin every 12 hours that the days were pretty manageable. I was a little more tired this round but squeezed in a few excursions.
I went to the San Diego Zoo & Wild Animal Park. The Zoo was great. I walked around for about 4 - 5 hours. The Polar Bears were very active and close to the glass. It made for great pictures. We saw the trainers with the cheetah's really close up. The elephant trainers were trying to coax the elephants into the water with a ton of treats but they were only mildly successful.
The following day we went to the Wild Animal Park. I could hardly walk up the hill from the parking lot to the entrance. So, I was wheelchair bound for the day. If you've ever been before you know how hilly the whole park is. We found out that they have a shuttle service for "handicapped" people. I fell into this category and it was a godsend. I've pushed a stroller around with a 30lb kid. I knew that there was no way that I could be pushed around all day!
It turned out to be the most amazing day ever. We were up at one of the overlooks the viewed the elephants. We looked over at their waterhole and there were several elephants rolling around in the water. I jumped out of the wheelchair and we ran through the paths over to an area that was directly in front of the water. There were about 6-7 elephants having a blast in the water including the babies. I have never seen them having so much fun. They were flipping around and playing with each other. The babies were chasing each other back and forth. I'm going to embed a little video that we took. It doesn't show everything but you'll get the jist of things. If I could see this every day in person I would be a happy camper. I've always loved the Wild Animal Park and now I appreciate them even more for providing the animals with a habitat that they can be themselves in. There is a sign posted with the story of this particular group of elephants. It said that elephants can be very destructive to their habitat. The reserve that they were in had too many elephants and were going to have to put some down. The WAP stepped in and took 7. Another zoo in Florida took 4. This enabled for no elephants to be destroyed. Since they came to the WAP there have been 3 babies this year. How amazing is that!
On the hair situation - It grew to about 3/4 of an inch long and was just becoming really uncomfortable. It was like it didn't know where to go when I layed down. It kept pulling on my scalp. It was also falling out if I had an itch too. So, I shaved it. I'm so much more comfortable but now I'm wearing scarves on my head to avoid any sunburn.
I have to admit that I realized that I had my 3rd round coming up about a week prior. I really wasn't looking forward to it - didn't want to do it but now it's done and everything is fine. The benadryl only knocked me out for about 30-45 minutes. I'm a little bummed because I've made one friend on my treatment days. Next round will be her last and I won't have anyone to chat with anymore. I'm hoping to have enough strenghth to make her a little celebration cake...maybe chocolate with chocolate ganache. We'll see if the stars align and it works out. I'm keeping my fingers crossed.
It's a funny thing in the infusion waiting room. There are usually some cookies on the counter and boy are they popular. Everyone stops by for a nibble. I made a batch before and they received rave reviews. This past Thursday I wasn't able to make them but I'm hoping to bring some in this Monday. Oh yeah, that's one thing I forgot to mention. Since I ended up in the hospital after round one and I'm horrible at getting enough fluid in me...I'm supposed to drink 64 oz./day but water tastes really horrible...my doctor has me on IV hydration 2 days after chemo...Monday and Tuesday. It really helps so I don't mind at all.
That's all I can remember right now...getting a little sleepy. My sister should be here in about an hour to help me cook some meals for the week. Isn't she a doll? Not to mention that I'll get to visit with my beautiful niece with the permanent smile ; ) Okay - nighty, night! I'll try to be better with keeping in touch!
Posted by Jenn at 2:03 PM 0 comments
Chemo Round 2
Friday, July 16, 2010
Yesterday I had round 2 of my chemo. I started out once again with Benadryl to help with any allergic reactions. Last time I lasted all of about 10 minutes before falling into a deep sleep. This time I lasted about 30 minutes. Whoo Hoo! Then I had a very nice and peaceful nap. It all went pretty quickly - a little over 3 hours. Next time should be faster since I'm not having any adverse reactions. I went home and took another nap. All is good.
Today I've just been a little tired but up most of the day. I've been playing Age of Empires on the computer with Alex & Eddie. It's a pretty fun game. You build your civilizations and attack the computer enemies. We've been kicking some bootie...makes it even better - it's no fun when they totally destroy you!
I got my Neulasta shot today as well. This is the one that will help my white blood count come up when it is low. It's also the one that helped land me in the hospital last time. I'm hoping to manage it a little better this time with some pain medication. I'm not going to try to go without any Vicodin this time ; )
I also got some amazing photo's from my family in Missouri today. I haven't seen any of them for probably close to 10 years. They were a sight for sore eyes and I'm hoping that I can take a trip over there to give them each a big hug - I miss them so much!
Anyways, thank you all for the kind thoughts, prayers and well wishes. It helps keep my spirits up. Everyone tells me that I have a very upbeat attitude and that will really help me through this. It's all because of all of you. Thank you & I love you all!
Posted by Jenn at 9:13 PM 0 comments
Locks of Love
Tuesday, July 13, 2010
I had my head shaved on Tuesday, June 29th. My friend Irene was kind enough to leave work early and come and film it for me. I really like my new hair do. It's so cool even though it is blazing outside and it's really nice not having to curl it or deal with it wrapping around my neck all night as I try to sleep. The only thing I worry about is a potential sunburn and it's a little uncomfortable if I'm in air conditioning - actually I'm freezing! Anyway, Enjoy....
Posted by Jenn at 5:53 PM 0 comments
I'm Back!
Friday, July 9, 2010
I’m back to work, back to feeling great, and back to tasting food again! It was a little rough after my first round of chemo…but not as bad as I was expecting…and Hey, I had constant help around me to bend to my every whim. (Hope I wasn’t too obnoxious).
I got all of my chemo via IV drip. I showed up to the hospital with my entourage, mom & Eddie…card games and laptop in tow. Then I was informed that I was only allowed one visitor. After some firmness from me and many statements that they should let people know the rules ahead of time, yada yada yada – they caved and all was well in the world again. They started me off with Benadryl to help counteract any allergic reactions I might have. We got through one round of cards and I was done. The Benadryl knocked me out. I woke up when she was administering the Red Devil. It is so RED! It looks like some pretty potent Hawaiian Punch. I haven’t had that stuff for such a long time! I had to munch on ice cubes and keep my fingers in a container of ice as well. This helps with nerve damage – Lovely ; ) I have to say that that was the worst of it. I was freezing with my hands in that ice!
Afterwards we went over to Olive Garden for my favorite – Chicken Scampi and Minestrone soup. I didn’t even get to the Scampi. The soup and salad…and er, breadsticks…filled me up - but no worries, I took care of the scampi over the next 3 days! Waste not, want not! It was fabulous!
I kept waiting for the horror to occur but I really didn’t have any major issues…well, a little one but I’ll get to that in a minute. I experienced some nausea but I love food way too much to lose any of it. I was pretty sore up and down my spine but I’d been lying around for almost a week. I figured I was getting bed sores from the laziness. I tried to be good. I would wake up for about 10 minutes every once in a while and cruise the house – just to say that I was making the effort of keeping in shape.
I received a Neulasta shot the day after my chemo. It was no big deal. They said that if my counts were low, it would kick in and help produce more white cells…I might feel some pain in my hips. The days were passing and no hip pain…just spine pain. I was raised to not take any medicine unless it was necessary. I was taking the anti-nausea medicine but that was it. I was waiting for the hip pain but that wasn’t happening. All of the naps were taking their toll on me too ; ) My hours of alertness tended to be around 4:00 am. If you find yourself awake at this time there is a cable channel called Cooking Network. It’s just like Food Network but has many shows that I’ve never seen before. I was having a great time.
Wednesday at 4:00am I woke up and drank some juice and flipped on the Cooking Network. I had taken 2 senacot the night before – they are to keep the going great. Well, between the senacot and the juice, I unleashed all hell. Over the next 12 hours I was a human faucet…and I started to spike a fever. Doctor said to head to the ER.
Of course by the time I got there I didn’t have a fever. I didn’t have to wait more than 5 minutes in the waiting room. That’s the benefit of having a compromised immune system. I had to wait for a bed for probably 15-20 minutes but to me it felt like 2 hours...the cool linoleum floor was looking very appealing to me. Once I had a bed I learned that not everyone is allowed to access my port for the IV drip…and pain medication most importantly.
Finally an angel sent from the chemo ward or something arrived. She was amazing and caring and able to access my port. They gave me Dilaudid and the world was once again AMAZING. Within about 20 seconds my pain was completely gone. The spine pain & stomach pain was pretty unbearable but the dilaudid reduced it to nothing. Eventually I was moved to my own room on the oncology floor. It was small and dark and I loved it. I had the most amazing nurses and I’m ashamed that I don’t remember all of their names. I slept around the clock and had dilaudid every 4 hours. Life was bliss. I told the doctor I didn’t want to go home – keep me as long as possible. I was sleeping and comfortable and all the things that I wasn’t at home. It was my mini vacation – all for $100.00 (my deductible). All was good. I think I literally slept for 3 days straight. I never even turned the TV on. On day 4 I awoke with lots of energy…the TV went on, I finally took a shower, and they kicked me out.
Here’s a little clip from Wikipedia on the wonder-drug Dilaudid: “It is thought to be 8-10 times stronger than morphine, but with a lower risk of dependency. In addition, it usually proves to be the first alternative of choice to morphine in severe chronic pain.” Heck yeah – It was definitely my first choice compared to the Vicodin that was also offered.
Posted by Jenn at 6:48 PM 0 comments
The Red Devil
Sunday, June 27, 2010
I've always loved the idea of traveling but the financial reality in my life makes that pretty much impossible. There is one place (if I only ever got to pick one) that I would love to go and that is Italy. I took an art appreciation class in college and the paintings and architecture call to me.
I was doing some googling last week and found some interesting information on one of the worst drugs that I am taking - Adriamycin: The Red Devil. Adriamycin was originally isolated from bacteria found in soil samples taken from Castel del Monte, a 13th century Italian castle.
I'm copy-pasting here because I don't have much energy but I wanted you to see what I saw...totally fascinating...
Castel del Monte (Italian: Castle of the Mount) is a 13th century castle situated in Andria in the Apulia region of southeast Italy. It was built by the Holy Roman Emperor Frederick II some time between 1240 and 1250; it has been despoiled of its interior marbles and furnishings in subsequent centuries. It has neither a moat nor a drawbridge and might in fact never have been intended as a defensive fortress.
Castel del Monte is situated on a small hill close to the monastery of Santa Maria del Monte, at an altitude of 540 m. It lies in the comune of Andria, occupying the site of an earlier fortress of which no structural remains exist.
It was completed in 1240 and was used primarily as a hunting lodge by Frederick until his death in 1250. It was later turned into a prison, used as a refuge during a plague, and finally fell into disrepair. It originally had marble walls and columns, but all were stripped by vandals.
The fortress is an octagonal prism with an octagonal bastion at each corner. Each floor has 8 rooms and an eight-sided courtyard occupies its centre.[1] The octagon is thought to be an intermediate symbol between a square (representing the earth) and a circle (representing the sky). Frederick II may have been inspired to build to this shape by either the Dome of the Rock in Jerusalem, which he had seen while on Crusade, or by the Palace Chapel of Aachen Cathedral.
After having been abandoned for a considerable length of time, the castle was purchased in 1876 for the sum of 25,000 lire by the Italian government, which began the process of restoration in 1928.
Central to the plot of Umberto Eco's novel The Name of the Rose is an old fortress known as the 'Aedificium'. This was almost certainly inspired by Castel del Monte.[2][3]
Castel del Monte was named a World Heritage Site by UNESCO in 1996, who described it as "a unique masterpiece of medieval military architecture".[4]
Castel del Monte is depicted on the reverse of the Italian-issue 1 Euro cent coin.
I just thought all of this was totally amazing and even if I never get to go to Italy...a little bit of Italy has come to me ;)
Posted by Jenn at 10:55 AM 0 comments
Chemo - Round 1
Friday, June 25, 2010
The morning started out with some great news. My oncologist said that there was nothing unusual with my brain MRI or my echocardiogram. So, I am starting out with a clean slate. I really feel very fortunate to have all of these tests run and am able to know the true condition of my body. I don't consider myself someone that makes much effort to take care of my body - so, I am breathing a sigh of relief each time I receive the results of these tests.
Next I was off to the juice bar. My regimine is referred to as TAC - taxotere, adriamycin, and cytoxin. I started out with some benadryl, anti-nausea medicine, and then the adriamycin. It looks like a bag of Hawaiian Tropic Kool Aide and is called the Red Devil. I guess it is pretty powerful and at it's worse can cause heart issues and myeloid leukemia. I've found some really interesting information on this drug. I'm going to do a separate post on it - it deserves it! Then I received the other two drugs. The taxotere was given to me at a very slow pace for the first 15 minutes to see if I would have an allergic reaction. I didn't so they increased the pace for another 15 minutes. Still no reaction, so, they let 'er rip. I expected to be there for over 5-6 hours but since my body was handling it well I ended up leaving after about 4. Not too bad!
You should have seen us in there. We set up camp and started playing cards. I brought my computer. I planned on having some fun and posting on the blog live. We got through the first round of our card game as the benadryl went in and that was all she wrote. I was down for the count. So much for my good intentions.
My appetite wasn't affected either. We were all starving and headed out to Olive Garden. I enjoyed a bowl of minestroni and a couple bites of chicken scampi - my favorite! I guess normally I would have eaten a little more but now I have great leftovers.
That's pretty much it. I slept like the dead on and off for the rest of the day. I was also taking steroids which makes my wake up time about 3am. I count on Showtime to keep me occupied until everyone else wakes up.
Tomorrow morning I go back for a shot of Neulasta. This will help my body to regenerate white blood cells. It also has the side effect of intense bone pain. We'll see if I can avoid the nasty effects of this one. I'm keeping my fingers crossed.
All in all...not a bad day...much better than I expected.
Posted by Jenn at 7:25 PM 0 comments
My new Port
Thursday, June 24, 2010
The first step to start this ball rolling was that I needed to have a portacath surgery. A portacath is a device they place in your chest that has a tube that feeds into one of your blood vessels. It makes it easier on me and the nurses when it comes to drawing blood or administering chemo. They just stick the port instead of digging for a vein. I was looking forward to the placement because I haven't been very fortunate lately with the blood drawers. I feel like they should be pretty skilled since they do it all day...every day...but that has not been my experience.
Anyway, I had my portacath surgery on Tuesday. I was at the hospital at 7am for placement at 8am. I've mentioned before that I really like to watch surgeries on TV/Internet - that is when it's of someone else. I really wasn't looking forward to being awake while they came at me with the knives. This is where a most amazing gentleman entered my life...er, hospital staging area...Darwin. He was a really nice guy. We chatted about having both just watched "My Sister's Keeper". It was a real tear jerker for me having experienced having a child with cancer. For him, it made him hold on to his kids a little tighter in the days since he watched it.
They wheeled me in to the operating room, swabbed me down with iodine and kept me busy with idle chatter. The surgeon came in and told me that he would make a small incision in my neck to feed the tube in that attaches to the port and another incision a little further down on my chest about 1 - 1.5 inches long to squeeze the port through all guided by sonogram. Darwin told me that the surgeon was really good and barely left a scar...that's reassuring but I was still pretty uncomfortable about being awake. Darwin then told me that the bar was open and asked whether I was going to be a cheap date or an expensive one...well, no question there, I told him to give it all to me. For once in my life, I was going to be the expensive date. Plus, who cares about the cost? The insurance company was picking up the tab - Give it ALL to me!
I was looking around and right above me they had 8 screens (two rows of 4) that displayed all of my vitals and who knows what else. I thought it would have been brilliant to have a movie for me to enjoy on one of them. I suggested it and they just laughed. That's pretty much all I remember until someone was shaking my arm telling me it was time to wake up. Can I just say right now, Darwin, I love you!
I stayed in recovery for about a half hour. The nurses were great. They had breakfast waiting for me as soon as I came out. I guess they heard me complaining of how I was starving and wasting away prior to the surgery. I was still hungry when I came out and was uber excited to see the food. I took a couple bites of egg, oatmeal, toast and all of my juice and water. I didn't eat much but it totally hit the spot. They unhooked me from my IV in the TOP OF MY HAND - I hate that - and I was out the door. We made a quick stop at Staples. I stayed in the car and after a few minutes, opened the car door and tossed my tasty breakfast in front of some poor innocent bystander. "Good Morning" and I waved...closed the door...reopened the car door and let 'er rip again. At least I felt better. I probably ruined the day for said bystander...oh well...I was still too drugged up to care.
I had an echocardiogram a few hours later to provide a baseline of my heart before chemo. Chemo is some pretty nasty stuff and it may be able to kill off the cancer cells but sometimes the long term damage can be pretty devastating too. The echocardiogram was interesting. You could totally see the chambers of the heart and the valves flapping back and forth.
Later that evening it was back to my favorite dentist in the world to have the right side of my mouth finished up. Everything went smoothly. I gave everyone a hug. They have been so phenomenally kind to me. I'm going to miss not seeing them each week anymore. They promised to check in on me which I thought was totally sweet.
Posted by Jenn at 7:56 AM 0 comments
Happy Father's Day
Sunday, June 20, 2010
Happy Father's Day everyone! I have the great fortune of having a pretty terrific father. He might not be the most verbally or physically affectionate person on the earth but I think he has a love for his family that has driven him to accomplish so much for all of those that he loves. I don't take this lightly. Many of the "men" of today are so involved with enjoying life...playing video games...going out to eat...keeping up with the Jones's that they don't have the drive to take care of their family. This trait has gotten lost along the way somehow. So, Dad, I appreciate all that you do and have done for us. It hasn't always been an easy road but now that I am older..and wiser (ha ha)- I appreciate it all. Did you ever think you'd hear me say that!
Once again, Happy Father's Day! I hope everyone has a great day with their family...I know I will...Lunch with my Dad, Mom, Sister & Brother-in-Law, and kids...dinner and game night with my kids. Am I spoiled or what!
Posted by Jenn at 9:42 AM 0 comments
Most Amazing Dentist EVER
Chemotherapy wreaks havoc on your immune system and can cause some significant sores in your mouth, not to mention tooth decay. I haven't been to the dentist in over 6 years. Horrible, I know! I didn't have insurance and then when I did I was afraid to go because I was starting to have trouble with my gums. I figured I was going to need a root canal or something. I'm pretty good at always imagining the worst. I've heard the stories about root canals - I wasn't going to go in willingly.
On the flip side here is a story that helped to push me in those doors. When my daughter, Brittany, was about 10 in the hospital at Christmas with leukemia I volunteered to help Santa deliver some gifts and cheer to the children cancer patients in ICU. There was a mentally handicapped little boy that we were visiting. He had mouth sores that had gotten out of control and had traveled through his digestive tract from one end to the other. He had over 20 IV's in his arms, legs and everywhere else that they could get a line in. The infection was causing his kidneys to shut down along with a multitude of other issues. It was the saddest thing to see his little body covered with all of those tubes...compounded by the fact that he wasn't able to verbalize how he was feeling or what anyone could do to help him feel more comfortable. When he saw Santa his whole face lit up. He was so excited. I'll never forget him and the look on his precious little face. I don't think that any of the burly fire fighters that were there delivering the gifts, Santa or myself held it together very well. We all had tears pouring down our faces but that little boy couldn't have been happier.
Anyway, I didn't want to end up in the ICU with multiple lines due to an infection even if Santa would visit me. So, I forced myself into the dentist office. I had received a recommendation for a specific dentist close to my house and I am so glad that I went. I ended up needing quite a bit of work done. The last 6 years have not been kind on my teeth. I had several old fillings that needed to be replaced. Cavities were starting all around them not to mention the need for some root planing on both sides. Now I've heard about root planing too and even seen it done when I was volunteering in a dental office. It is some pretty nasty stuff and looked pretty painful. I was scared to death to have it done.
Here's where I have to give some major KUDOS to the most amazing dentist ever! I didn't feel a thing...not that day...not the next day. Normally my gums are sore the day after flossing but I felt nothing - nada!
Yesterday I went back to have the left side cavities taken care of. I had the same amazing experience. I need to add a little to the story. I just called the dentist last week to see if they could squeeze me in. I hate to use the "C" word to my advantage but I really needed to get this taken care of before my chemo started. They didn't have appointments available but they managed to fit me in during their lunch hours on Thursday and Saturday. He didn't have any open time before my chemo this next Thursday to finish up the right side. So, he is going to see me on Tuesday night at 6:30 when his office is normally closed. Keep in mind that my fillings are going to take him about 1.5 to 2 hours to complete. I'm absolutely amazed at the kindness that he has shown me. His staff also made me some trays for my teeth to wear at night along with some MI paste. This will help my teeth to stay strong and healthy through my treatment.
There is more and I could go on and on but all I have to say is that if anyone is in need of a very kind, generous and AMAZING Dentist please call Dr. Abraham Sahyan (714) 529-2626. His office is very warm and inviting. It is like a cozy and beautiful living room...and so clean. I felt like asking him for the number of his cleaning service because they are doing a bang up job. The office is located in Downtown Brea at the Birch Street Promenade. You can enjoy a movie while you are over there...or come and visit me. I'd love to see you!
Posted by Jenn at 9:31 AM 0 comments
My Decision
Saturday, June 19, 2010
I met with my breast surgeon AGAIN and she gave me all the details AGAIN. I was hoping for some bit of information that would give me an AHA moment and make my choice easy.
I figured that I would ask her if she could do a skin sparing mastectomy. If she could do that than that would be my choice. Of course it wasn't that easy. Since I have at least one positive lymph node I have to have radiation. You can't have radiation with skin expanders in - those are what they use for reconstruction with the skin sparing mastectomy. So, I'm not eligible for it - back to the drawing board.
I talked to the patient coordinator. Her position is hard to explain. She talks to the patients and the doctors. She tries to get us any information or support that we may need. She listened to me regarding all of my concerns but just like everyone else...wants me to have all of the correct information so that I can make the best choice for myself.
It's literally driving me crazy going back and forth with all of the information. I just need to make a decision, stick to it and move on. I've ultimately decided to stay the course of my original decision. I will do neoadjuvant chemotherapy followed by a lumpectomy...radiation...hormonal therapy. I think that this gives me the most possible choices down the road.
Hope I made the right decision. Only time will tell.
Tuesday I will have my port put in and Thursday will be my first chemo session. Wish me luck!
Posted by Jenn at 10:25 PM 0 comments
Time to Draw Straws
Wednesday, June 16, 2010
I had my mind made up to have neo-adjuvant chemotherapy (chemo before surgery) followed by a lumpectomy - followed by radiation - followed by hormonal therapy...assuming that the tumor shrunk down enough to allow for the lumpectomy until today.
I met with the oncologist yesterday. It is his opinion that it is best to avoid radiation if possible especially given my age. I guess that radiation can potentially affect the heart and lungs causing issues in the future. I met with the radiologist who confirmed this.
Here are my choices:
I can do the chemotherapy first. I would then have the lumpectomy if the tumor shrinks enough - if not, I would have to have a mastectomy. Since I had the chemotherapy first and this could potentially change the tumor I would have to have radiation. That is non-negotiable.
In my opinion, the benefit is that you would be able to tell if the chemo is working by shrinking the tumor. If you take the tumor out first, there is no way to tell if the chemo is killing off the cancer. Call me crazy, but I want to know. The doctor said that some women would rather not know if their cancer is chemo resistant. They just want the tumor out. The downside is that I would have radiation for 5 days per week for six long weeks. I don't know about you but that is a pain in the butt - especially since I wasn't born independently wealthy and would have to do this while going to work too.
Choice #2 is that I opt to have a mastectomy out of the gate followed by chemotherapy. There are a couple of benefits. One is that since they have the tumor they can send it to pathology and make more informed decisions because they get to see the characteristics of it while it is unchanged. They would remove my lymph nodes at the same time and be able to stage me properly. After doing this, they would be able to say whether or not I would need radiation. There is a possibility that I would not require it - but not a guarantee. The oncologist thinks that it is worth it to have the potential to not have to have radiation. The last thing is that if I have a mastectomy I can participate in a clinical trial run by UCLA. In this trial I would have a one in 3 chance of being able to be on the drug Avastin. The cost of Avastin is about $80K per year that would be covered by the trial. They believe at this time that this drug could have fewer & milder side effects not to mention better outcomes. I'm not guaranteed to get to have this drug - just the possibility to have it. If not, I would receive the same chemo that I would have received had I not participated in the trial. So, no negative treatments if I participate. One other thing - If I participate in the trial I would not be allowed to begin reconstruction for one year after my treatment is complete. That means that I would be a uni-boober for about a year and a half! I can't even wrap my head around that.
So these are my choices and I have absolutely no idea what to do. Currently, they have scheduled me to do chemo education tomorrow and my port-a-cath placement on Tuesday. Monday all of the doctors (the tumor board) are going to review my case. They will come to some sort of opinion on what they think would be the best treatment...but ultimately it is my decision to decide what is best for me. That sucks! I thought they were supposed to tell me what to do and I get to moan & groan about it but ultimately say, yeah, go ahead.
Of course there is always my usual way of doing things. Whenever there is a decision to be made on where we are going to go to grab something to eat I usually don't have an opinion. I pretty much feel that I can eat whatever. I don't really want to make a decision. Well, the boys get me back on that one because they will always suggest Taco Bell. As soon as I hear Taco Bell I have a moment of clarity and can make a decision on the spot. So, Taco Bell or Mastectomy....
Posted by Jenn at 10:58 PM 0 comments
Breast Pathology and Surgical Treatment
Tuesday, June 15, 2010
The Susan Komen foundation sponsored a seminar on Breast Pathology and Surgical Treatment. My breast surgeon was one of the speakers. So, I figured I’d check it out. It was a pretty good overview of the different types of breast cancers. I’d already read about everything online but it was still very interesting. One of the doctors presented a timeline of breast cancer treatments. Did you know that women used to leave their families and go to a facility and wait to die…some living decades? The next step was complete removal of the breast with no other treatment…it all evolved to where it is now. It was pretty interesting.
What about knocked me off of my seat was my doctors presentation. I think that this presentation was originally set up to present to other surgeons. There were a lot of slides detailing different “cut patterns”…something about bat wings…and other crazy names. I have to say that I am not queasy when it comes to seeing the human body cut open. Maybe my problem is because I know that I’m going to be on one of these slides someday. She wanted to show the before and after surgery prospective and I have to admit that it really was impressive. She definitely improved the overall look of some of the women’s breasts even though she was slicing and dicing in there. I wasn’t mentally prepared to see the slides of countless gaping holes during surgery. Eddie kept it light…his comment was, “There are a lot of ugly boobies out there!” Yea, but she did make them look better…hopefully for me too.
Posted by Jenn at 6:41 PM 0 comments
Emoticons
I’m sorry if I offend anyone with this but I stumbled across it the other day and found it totally hilarious…I’ve got to look at this with some humor or I’ll lose my mind…that is if I still have one!
Emoticons for Breast Cancer Surgery & Reconstruction:
1. ( o )( o ) — basic boobs
2. ( o Y o ) — basic boobs with cleavage
3. < - >< - > — basic boobs after a mammogram
4. ( o )( o#) — basic boobs after a biopsy
5. ( o ) ___ — post-mastectomy
6. ( o ) ___ ~ — post-mastectomy with drain
7. ( o ){—}~ — post-mastectomy with immediate expander insertion and drain
8. ~___ ___~ — double mastectomy with drains
9. ( o )(o, — partial mastectomy/lumpectomy
10. ( o )(@, — partial mastectomy/lumpectomy done through circum-aureolar incision
11. (o)(o, — partial mastectomy with contralateral breast reduction
12. (: /) — Frida Kahlo looking skeptical
I’m hoping for option #2 when all is said and done!
Posted by Jenn at 6:40 PM 0 comments
PET/CT Results
Saturday, June 12, 2010
As I was led to the room to change into Super BC Woman and wait for the doctor, I noticed that she was in the hallway with another lady in a lab coat reviewing something on the computer. The nurse said that the doctor would be in soon since I was the only patient right now. Of course, I figured that the lady with my doctor must be the radiologist pointing out all of the metastases on my scan. I braced myself for the bad news.
Well, I wasted all of that effort. The lady with my doctor was an intern. My scan was clear except for my breast and lymph nodes. There is mention of some potential arthritis starting on my scan...a little something to look forward to in my (hopefully) old age!
The next topic was the lumpectomy/mastectomy discussion. She thought that I wanted a lumpectomy but I had to let her know that I was leaning towards a mastectomy. I really don't want to have to go to radiation 5 days a week for 7 weeks - not to mention having orange peel skin for the rest of my life. There is also the comfort of thinking that if they just take it all...maybe that will be it and I won't have to worry (as much) about it coming back. Did I mention that the type of breast cancer that I have has a higher percentage of presenting itself in the opposite side? Well, those are my reasons. They may sound crazy to some but it's my body.
Let's just say that the hospital is very pro-breast conservation. She let me know that even with a mastectomy you have to have radiation. I countered with...but not as much and I didn't want my skin to be a sticky gooey mess! She's referring me to the radiologist so that he and I can have a little chat about all of this. I agreed to try to go for a lumpectomy and will start with neoadjuvant therapy. What that means is that I will not start this process by having the tumor removed. They will leave it be and I will start with chemotherapy. They will be able to tell that the chemo that they choose for me is working by being able to see if the tumor shrinks or not. If it doesn't, they will be able to change it until they find the right mix. The ideal situation is that the chemo will shrink the tumor and they will have to remove less tissue from my breast. I hope this doesn't mean that I won't be getting a new set of tarts! That was the one upside in this whole process.
Posted by Jenn at 10:40 AM 0 comments
PET/CT Scan
No one told me to wear clothes with no zippers or buttons. So, I got to put on some scrubs for my test. I am totally looking the part of a medical employee. Maybe I can sneak back and take a look at my images when the test is done. That would be like a dream come true. I wonder if I could convince one of the techs to bring me in on the "take your kid to work day". Yeah, I know, I'm not their kid but I definitely would enjoy it more.
It is a little disturbing that the radioactive substance that they put in your IV drip is held in this metal container like it is going to contaminate the world if it got out. I've got to wonder how safe it is to inject it into my body...I'll have to consult with Mr. Google later.
The technician was really nice and explained everything. He seemed pretty excited with his job and made some reference to Star Trek in regards to how the images were created at faster than light speed or something like that...lost me there for a while...never been a Trekkie. Nice guy but that was the most uncomfortable IV that I have ever had! I figured he could at least make it up to me by letting me see the results. No deal. He gave me some lame excuse about how the machine just got a bunch of calculations and those were later made into the images and given to the radiologist for review. He said he didn't even see them - Yeah right! Well, I had to try ; )
I had to drink this concoction for contrast. I can't complain. It really wasn't that bad. Then I got to take a nap for an hour to let my body absorb everything...hoping for very little red on my scan.
The scan was pretty uneventful. You have to lay down on this narrow table and you go in and out as it takes the images...pretty easy stuff. Since I hadn't eaten since dinner the night before, my only thought was of food! I totally forgot to try to sneak in as an employee and see my images...maybe next time.
Posted by Jenn at 10:17 AM 0 comments
Biopsy Results
Well, there you have it! I am one lucky girl since I noticed the whole thing because of the lime sized lump in my chest. When the doctor showed me my mammogram images she said that they wouldn't necessarily have caught it using just those images...both sides looked virtually the same. The giveaway was the mass they saw using the sonogram...which they wouldn't have done if I hadn't felt it. All things considered, I feel incredibly lucky that God gave me my lump. It was the "X marks the spot" on my treasure map...only I feel ripped off...no gold dubloons for me!
A few more lucky details of my biopsy were that the cancer cells are estrogen+, progesterone+, and HER2-. The ER+ & PR+ give the doctors the option of using these hormones to gain access to the cancer cells and (hopefully) kill them. The HER2- is also a good thing. HER2+ cells are slightly more difficult to treat.
Nothing is ever 100% positive. So, my negative take away from this is that I have at least one positive lymph node. They won't know how many positive nodes until they actually take them out. Sounds like a joy...something to look forward to.
Next up...PET/CT scan.
Posted by Jenn at 9:39 AM 0 comments
I’m not a sissy!
Tuesday, June 8, 2010
By the time I reached the car I was in more pain than I’d ever experienced in my life. I was protecting my left side with my arm. I guess that must be a natural defense. Labor was not this bad…definitely not this bad. I don’t know about you but Tylenol does not work for me. It never has. Of course, that is what they said that I could have. Only Tylenol. Aleve? No. Tylenol…or Tequila. Anything with a T. Tequila sounded very tempting but I tried the Tylenol. After about an hour I figured killing myself would be an improvement. I had Eddie call the doctor’s office. Nope…the doctor will not prescribe any pain medication. I was just about to drive to urgent care and let them deal with me when the nurse from the biopsy called. How was I doing…not so good…pain on a scale of 1 – 10…20. She asked me if I had called the doctor. Yep – No prescription. She was a doll. She said; Let me make some phone calls. She called me back. My general physician called in a prescription for me. She is my new best friend – Love her!
I’m not a sissy and I generally don’t take any medicine but I was beside myself with pain. I took some Vicodin and all was good again. I forgot to mention that they ace bandaged me up like Barbra Streisand in Yentl and put ice packs on me and told me that I was going to have an incredible amount of bruising. My bleeding wouldn’t stop after the procedure. The doctor had put the whole weight of his body (It felt like it anyways!) on my boob to get it to stop. I guess that would cause a little bruising! I was pretty sore but the tightness of the bandage and ice packs really did help. I only ended up using 5 of the 30 Vicodin from my prescription. Those are going into my cache for the next time my sadistic doctor refuses to give me pain medication.
Posted by Jenn at 11:19 AM 1 comments
Biopsy
By the time I reached the office building I had to make a bathroom pit stop…Nervous stomach. Who knew I would have one of those! I went in the office and was being walked to my room. The nurse asked if I need to use the restroom. Nope, just went. Of course I get to wear my Super CB Woman cape! She told me all of the details of what they were going to be doing….Uh, I think I better use the restroom again.
The nurse does a sonogram so that the doctor can see where he is putting the needle. It’s very fascinating. I wasn’t looking forward to even the needle of the numbing medication but it was fine. Barely felt it. He made the incision and put the large needle in. This one has a contraption that comes out and grabs a piece of the tumor so that they can run pathology reports on it. Am I ready? Yes. Keep breathing. Okay. Yeah, I’m great. They had everything positioned properly. Ready? Yes, go for it…and he did. I let out a, “Holy Mother of God!” Wow, and if you had asked me before I would have thought I would have used profanity! I guess I have a little more class than I thought. I guess he numbed me but not all the way in the front. It was incredibly painful – and I didn’t even sock anyone. He apologized and said that he really should do another one. He looked at the hunk he took out of me and said it was a good sample. I was trembling like a fool at this point but holding it together. Okay, no second hunk…just on to the lymph nodes.
It was all I could do to stay on that bed and let him go for it again. I’m a fairly compliant girl when it comes to those of authority. It was in my best interest, right? I was fervently trying to convince myself. He numbed me up some more and I watched as he put the needle in again. I have to say that it is a great idea for them and for the patient to be able to see this. It helped me to know that it was there, ready to go, and hopefully was going to be quick. He got to the lymph node but the darn things just slip around like a bean in a bowl of jello. I couldn’t feel a thing. He let it go…Still no pain. He had a good sample but wanted to get another since they move around and wanted to make sure that he got what they needed. Heck, I didn’t care. I didn’t feel a thing that time. Go for it! He did and I thought I would die. I guess there are a lot of nerves there and he hit one or all of them by the way it felt. He was very apologetic and I thanked him but Good God, do you think that you could do a better job numbing me?
Posted by Jenn at 11:18 AM 0 comments
Things are movin’ now
I had to put on one of the capes again with the two flaps up front. They like you to throw the flaps over your shoulders. Now it really resembles a super hero cape. Sit up straight and put your fists on your hips. I’m reminded of Linda Carter as Super Woman. I’m definitely not Super Woman…I guess I’m Super CB (cancer boob) Woman.
The doctor was great. She explained everything in detail. I’d already read all about it but it was still nice to hear her confirm everything that I’d seen. She explained the differences between lumpectomy and mastectomy. She was pro conservation meaning lumpectomy. There really isn’t a difference in recurrence or survival rate between the two. There are just some reasons why they would do one over the other. Of course I was pro lumpectomy but it comes with 5-7 weeks of radiation…daily M-F radiation! I’m totally not up for that! Hello! I work…Single income household that is barely holding it together. How in the world is a person supposed to go to the doctor’s office every single day? Not to mention, that radiation can burn your skin and make it look like an orange peel – sometimes, permanently! I don’t go in the sun much and I have really sensitive skin. I’m not thinking that radiation is going to be something that I’m willing to do. I’m not really up for having my entire boob removed either and there is a chance that it will come back in the other side…meaning more time under the knife. Great.
My great grandma had a mastectomy and I used to stay over there once in a while. One night when we were getting ready for bed she showed me her chest. I don’t remember what she said or why she showed me but I’ll never forget the image of my poor grandma and her chest. It was the most horrific thing that I had ever seen. I can’t imagine living with that staring you in the face every day not to mention how you would ever want to snuggle up to your husband. Now they have reconstruction surgery. Maybe it’s not so bad now.
I had Googled this situation as well. I am very forward thinking and proactive! I learned that it is not that great. I’m sure that every plastic surgeon puts their very best patient’s photo’s online to garner more business. However, I’m not buying it. I’m totally mortified. Did you know that they can give you a tummy tuck or take some skin of your bottom to use to construct your new breast? I am not looking forward to have one or two butt boobs. One more lovely detail...they can tattoo a nipple on for you to make it look more realistic. This is good in theory but I think the doctors need a little more practice. It shouldn’t be that hard to make a decent circle. The photos I saw online made me think that there is no way under the sun that they are going to do that to me. Didn’t they draw circles in kindergarten with their crayons? Holy moly, I am not letting them do that! I guess you could always go to the pro’s at a tattoo parlor…they’ve had to have seen worse than butt boobs, Right?
Anyway, more tests ordered. Next a core needle biopsy for the next day.
Posted by Jenn at 11:14 AM 0 comments
Finally!
A doctor called me from the general practitioners office that I go to but not one that I’d ever seen before. I guess they just wanted me to stop calling and leaving messages about how I wanted to know my prognosis and that they clearly had enough information by now – thank you very much.
I was told that I have Ductal Carcinoma. It was possibly in my left lymph nodes but not in any other lymph nodes in my neck or sternum. The tumor is approximately 3 cm – 12 oclock – contained and there is a 1.5 cm node that is suspicious in my left axilla (arm pit) and they plan to biopsy both.
Aha! Isn’t Google wonderful? I wonder if a person really needs to go to school for umpteen years and pay hundreds of thousands of dollars to become a doctor. I think they should hire me now! Plus, I have such a passion for the field ; )
I have to admit that I really wasn’t afraid, mad, crying hysterically or anything else that you hear from other people. I was fascinated. I went back to my Google friend to learn all about it – twisted, I know.
Posted by Jenn at 11:10 AM 0 comments
MRI
You know no one ever wants to tell you anything and I’m sure they are just trying to cover their patooties because everyone is so sue happy but all I want is for them to confirm what I already know. Nope. It’s not going to happen. Instead I get to have an MRI.
Okay, back to Google. There’s some really cool images and once again it’s pretty obvious even for a layman to be able to tell if it’s cancer. My plan: go in and act stupid. Wow you have an amazing job. I bet the images are really cool. Can I see mine?
The MRI that I did was great. I really wasn’t looking forward to doing it. I’ve never had one before and hearing other people’s stories of being claustrophobic was starting to freak me out…but when you are having one on your breasts it is done a little differently. I got to lay face down with each one in a different hole. I guess this helps them image them better. The tech had put pillows all over the place and gave me earplugs. I was comfy, not claustrophobic, and probably could have taken a nap.
Afterwards, I played my role to a T. She had a large image and a bunch of smaller ones along the bottom. She clicked on one of the smaller ones and forwarded through the image – kind of like a movie on fast forward. Okay, my suspicions kicked in again since it was really impossible for me to see anything. She could have showed me on the large center image so that I could actually see something. She acted a little nervous and then I was escorted out. I’m not trained in body language or anything but I had no doubt about my prognosis now.
Posted by Jenn at 11:08 AM 0 comments
Mammogram & Sonogram
Thursday, June 3, 2010
I'd been dreading the tortuous boob squishing for as long as I can remember - definitely way before I was the age at which I would have to have one. I've heard the horror stories where they take all you've got and smash you flat as a sheet of paper as you scream bloody murder...definitely not something that I was going to volunteer for but I guess now I really had no choice. Off to the torture chamber...
My nurse was this very sweet older lady. She was gentle and very kind. I had to act a little tougher than I felt since I wasn't exactly happy about sporting about with no shirt on. She squished me horizontally and vertically and it really wasn't that bad. It was like when someone leans on you with all of their weight and you want to push them off and say "get off me you cow!" but definitely not painful. I told her that I didn't think she could get it to show up because it felt so close to my chest wall but she just smiled and said she got it.
Next I had to wait in an interior waiting room with a couple of other women in our specially contrapted "gowns". I have to admit that they are better than the paper ones that you normally have to wear but it seems like however you try to drape yourself you are always popping out on one side or the other. The lady across from me was playing peek-a-boob too. Totally humiliating!
The technician had no problem finding my lump. It's the size of a small lime. You barely have to touch me and you can feel it. She kept moving the hand held thingie around to get a good picture and measurement.
With all of my Google training, there was no question in my mind that it was cancer. When it's a cyst it has very defined oval borders. When it is cancer, they are uneven and "spiculated". Mine looked like the drawings from our high school biology books of a neurological synapse - definitely spiculated. Once the technician saw that she started digging like a mad woman in my under arm until she found a small oval - dark in the center - a lymph node. Okay, I forgot to look that up on Google darn it!
I guess I'm a suspicious person because after that everyone was so nice to me - Too nice. Yep, the Google doctor definitely believes cancer and most likely in the lymph nodes too.
Posted by Jenn at 10:30 PM 0 comments
Google Maniac
If you don't know this about me already I am freakishly fascinated with human anatomy and physiology. I always have been. I think I missed my calling. I should have gone to school for something in the medical field - anything - it really doesn't matter what. I love it all. There was a time when my sister and I took human anatomy together. We were trying to get into dental hygiene and it was a prerequisite. We had a cat that we had to disect out. AMAZING! I brought it home and worked on it on the kitchen table. I know my sister thought I was weird and I probably scarred my kids for life but I loved it. I remember when cable was new and they used to show surgeries. I could watch them all day.
When I thought I might have cancer I did what almost everyone does - went straight to Google. There is so much out there and I really do find it incredibly fascinating. Of course, I wish that there wasn't something inside of me but it kind of kicks you in the butt to learn something new. I knew that I would be having my mammogram & sonogram soon. So, I spent every free moment I had reviewing everything that Google said and every image that was available. I wanted to be prepared because I knew that the technician wasn't going to share any info with me. I'm not a patient girl. I was ready to self-diagnose.
Posted by Jenn at 10:11 PM 0 comments
What the heck is that!
As I talked to my sister on my cell phone at work trying to hide out down the hall so that no one would hear me, we were planning my mom's suprise birthday party, I had an itch and I scratched. I felt a rather large bump on the left side of my chest. It was huge. I'd say about 2 - 2 1/2 inches. I knew it couldn't be good. Cancer runs in my family. I figured that's what it was. Hey, I'm no dummy. This was in early April.
This little situation pushed me into doing something that I never do - go to the doctors. I've never had to go much, never been sickly. Hence, didn't really want to...ever! I've been saying for about 2 years straight now that I really need to make that appointment but really, who wants to volunteer for THAT. The lump forced me to finally make the call and schedule an appointment. I thought it had been about 6 years since I'd been. Of course they let me know that it had actually been 8. I'm considered a new patient now. Great - I'm in for loads of fun.
Fun it was. I had to do THAT, breast exam (yep, huge lump), and blood work. As my doctor felt the lump she said, "It doesn't feel that hard". I asked, "Is that a good thing?". She said it was because cancer was usually small and really hard but she scheduled me for a diagnostic mammogram and a sonogram.
Posted by Jenn at 9:56 PM 0 comments