The holidays were lovely and surrounded by family.
Prior to treatment, I was feeling strong and had a great deal of stamina. I was able to work from home and was grateful for the distraction it provided.
I had treatment #3 on Thursday, December 20th. We brought gifts of chocolate for Robin (front desk), Dr. Lagant and Melinda.The office was pretty quiet for the holidays with only one other patient in the transfusion center. Brittany and I packed a 'light lunch' and enjoyed the 2-3 hours playing games and chatting.
The nausea was better managed this time. Brittany kept track of the four different medications that day and transferred responsibility to Alan that night. 48 hours of constant medication and sleeping made for the best immediate experience thus far. Unfortunately, this transitioned into a challenging time with some intense stomach issues and fatigue. Christmas Eve was the peak of the worst of the symptoms. Luckily, Alan and the kids were in amazing form. They had the presents bought, wrapped and everything ready for the holiday. I was snuggled on the couch where we watched several Christmas movies including, A Christmas Story, Elf and A Christmas Carol.
In the morning, Alan put Christmas under the tree. We woke the kids up around 8am and enjoyed our morning. Christmas was a 'scaled down' version of itself but the kids were so great. Although there weren't a lot of surprises (as they helped buy most if not all) or even gifts - they acted like it was the best Christmas ever. I was so impressed and humbled by the experience. The true joy of Christmas, being together with loved ones/family was never so clear to me. Afterwards, Brittany, Alex, Alan and Papa went out and shoveled the driveway/walks - hitting several neighbors along the way. Brianna stayed inside and cleaned up for the afternoon family party. Grammie was in charge of dinner and organized it. I spent this time resting and getting showered/dressed. A bit of an effort but so much better than the day before!!
That afternoon, my siblings all came over and it was so fun to watch everyone open their gifts; especially my little nieces and nephew! I was so grateful that they were able to come over and had recovered from some earlier illnesses that week. There is nothing like the joy little ones have when opening their gifts. That night, after everyone left, the kids played Scrabble with us and then tucked us into bed early; a big but happy day.
While I would not have chosen this journey - it has provided me with some additional insights and perspective. As a woman who feels she is solely responsible for running both her professional and personal 'worlds', I have learned that things run without me. In someways, they run better and those around me 'gain' from the opportunity to be in charge. Who knew? Humbling and wonderful all at the same time.
Now it is time for recovery and building back my strength for treatment #4 on January 3rd- the official halfway point and end of Adrimyacin!! I'm holding out hope that the following four treatments of Taxol will be milder and easier to manage through. I so badly want to be one of those people who go through chemo and barely miss a step but that is obviously not the experience I was destined for, at least for now.
It is my sincere hope that your holidays were also surrounded by love, family and happiness.
Wednesday, December 26, 2012
Monday, December 10, 2012
Chemo #2
We continue to climb upwards on this crazy journey.
After the first treatment, we had a couple extra experiences. I decided I was going to be independent and took myself to my expansion with the nurses at the breast clinic, not realizing that I had something called a 'seroma' in my pseudo breast. We had been warned that taking the drain out with higher outputs could have this result but I was surprised that I had no idea it was even there.
The doctor was in surgery and unable to examine me and the nurses were unable to do the necessary procedure, so Alan took me the next morning to Huntsman. Dr. Agarwal determined the area needed to be drained. For the life of me, I'll never get use to the fact that any size of needle inserted into this area can't be felt! They drained about 60 ccs of liquid and said it didn't look infected so not to worry. I was also on antibiotics for a urinary tract infection, so they ended up doing double duty. They expanded me 90 ccs and we went home for the day.
My strength continued to improve each day and the side effects lessened as well. The family has been very protective and ensure that I'm escorted almost everywhere. To increase my strength, there have been short walks with us increasing the distance every time.
Last Saturday, I woke up in the morning to my hair falling out in large bits. We called my cute hairdresser Kelly and she had Alan and I come in to her salon that night at closing. I went first and it was shocking to go from long hair to a GI Jane hairdo but the sting was lessened when Alan followed me and cut all his hair off too. It helps being bald when the person sitting next to you in bed is bald with you.
This Saturday, the GI Jane haircut started to fall out as well and the inevitable next step - complete baldness was at hand. We were given some expert advice that taking duct tape - yes, duct tape - and applying it to the scalp would remove the hair instead of having it slowly shed. It worked for the most part but I do have strands of hair here and there that are stubbornly hanging on. The look is a little like 'Gollum' from the Hobbit but I'm sure the rest will come out shortly.
The second treatment was this Thursday. It took a little longer than last time for the chemotherapy meds to be made and we were there for about 3 hours. This time around, I had some stronger anti-nausea medications which helped me sleep through the worst of the first 48 hours of nausea. I'm tired and have some 'stomach issues' but otherwise doing well. I can tell I'm on the upswing again and will need to slowly rebuild strength for the next treatment on December 20th. On January 3rd - the fourth treatment will mark the halfway point of the 'hard chemo' and the end of the Adrimyacin/Cytoxan regiment. I'm hopeful that the next phase will have kinder side effects.
I'm doing well and learning a great deal from this experience. I love my family and friends who continue to support me. The relationships truly are the only things that matter.
After the first treatment, we had a couple extra experiences. I decided I was going to be independent and took myself to my expansion with the nurses at the breast clinic, not realizing that I had something called a 'seroma' in my pseudo breast. We had been warned that taking the drain out with higher outputs could have this result but I was surprised that I had no idea it was even there.
The doctor was in surgery and unable to examine me and the nurses were unable to do the necessary procedure, so Alan took me the next morning to Huntsman. Dr. Agarwal determined the area needed to be drained. For the life of me, I'll never get use to the fact that any size of needle inserted into this area can't be felt! They drained about 60 ccs of liquid and said it didn't look infected so not to worry. I was also on antibiotics for a urinary tract infection, so they ended up doing double duty. They expanded me 90 ccs and we went home for the day.
My strength continued to improve each day and the side effects lessened as well. The family has been very protective and ensure that I'm escorted almost everywhere. To increase my strength, there have been short walks with us increasing the distance every time.
Last Saturday, I woke up in the morning to my hair falling out in large bits. We called my cute hairdresser Kelly and she had Alan and I come in to her salon that night at closing. I went first and it was shocking to go from long hair to a GI Jane hairdo but the sting was lessened when Alan followed me and cut all his hair off too. It helps being bald when the person sitting next to you in bed is bald with you.
This Saturday, the GI Jane haircut started to fall out as well and the inevitable next step - complete baldness was at hand. We were given some expert advice that taking duct tape - yes, duct tape - and applying it to the scalp would remove the hair instead of having it slowly shed. It worked for the most part but I do have strands of hair here and there that are stubbornly hanging on. The look is a little like 'Gollum' from the Hobbit but I'm sure the rest will come out shortly.
The second treatment was this Thursday. It took a little longer than last time for the chemotherapy meds to be made and we were there for about 3 hours. This time around, I had some stronger anti-nausea medications which helped me sleep through the worst of the first 48 hours of nausea. I'm tired and have some 'stomach issues' but otherwise doing well. I can tell I'm on the upswing again and will need to slowly rebuild strength for the next treatment on December 20th. On January 3rd - the fourth treatment will mark the halfway point of the 'hard chemo' and the end of the Adrimyacin/Cytoxan regiment. I'm hopeful that the next phase will have kinder side effects.
I'm doing well and learning a great deal from this experience. I love my family and friends who continue to support me. The relationships truly are the only things that matter.
Friday, November 23, 2012
Chemo #1
Monday was the big day.
Alan and I were anxious that morning. I ate a light breakfast of oatmeal a few hours in advance and numbed my port with the prescription cream for 45 minutes. We then drove together and talked about our nerves and hopes for the upcoming experience.
The best part of the day was getting the drain removed. What a great feeling to not have a tube coming out of me for the first time in months! We then went to the infusion area. There was only one other patient and the chairs are located in a nice sunny area. I'm not going to lie, it felt a bit like going to the electric chair or maybe more accurately, going in for a lethal injection as I eased into the big recliner chair.
Our nurse, Melinda started the first step by withdrawing blood from my port. She is very nice and the only nurse at this facility who administers the chemotherapy. Her South Carolina accent is sweet and reassuring. Melinda started the IV with three different types of anti-nausea medications. They took about an hour to process. The longest part of the experience. At this point, we were ready for chemo and they started with Adrimyacin also known as 'The Red Devil'. They had to manually insert this into the vein and so three large syringes with bright red medicine (It looked like red jello before it thickens) was slowly injected. When that was finished, I took a bathroom break and the first side effect (red urine) was already there. We then spent another 30 minutes getting the final drug through IV -Cytoxan. I could smell the chemicals in my system - and that smell has stayed with me for several days.
We were done for the day. Alan had to go to work so I was put in the care of my friend, Frankie. We ate a light lunch and settled down to watch a movie but the side effects soon came on with nausea and some fatigue. I went to bed and started my oral anti-nausea medications. When Brittany came home with Brianna from USU, they took over "Mama babysitting duty". It was a long night for Alan who faithfully administered the anti-nausea pills throughout the night. He set up a schedule and set his alarm clock to ensure I didn't lapse.
By morning, we had survived the worst of things. Brittany took me back to the clinic and I received the Neulasta shot which is a very expensive medication used to boost my white blood cell count. I was still nauseous and slept on and off with all the meds in my system. The next morning, I felt like I had been hit by a truck. Muscle aches in my neck and pelvis and the feeling of needing to urinate constantly. Uncomfortable, it was a long third night.
Thanksgiving started better and I was able to sit with Alan and my sister while they made dinner at least for the most part. I was tired and still sore but less so than the day before. I was also able to stop the anti-nausea meds and eat more than the previous days. It was nice to visit with family in a low key setting.
Today, I'm tired but feeling good otherwise. Alan and the girls bought the Christmas tree and decorated the house with me securely nestled on the couch. I was able to clean out the dishwasher and visited with Alan's brother Gary and his cute family. My stamina and overall health seems to be slowly improving. No nap today...which hopefully means a deep, restful sleep.
My goal with this blog is to continue being open and honest about my experience. I hope it helps all my loved ones and friends to know what is going on without censure. While I wish I was brave and full of constant grace - I know that will not be the case. It was rough and there was a moment where I started to consider/calculate my survival odds if I only did a few treatments and not all eight. It does helps to know the worst passes as time goes by. Looking forward to this being a distant memory and hopefully we will be able to stand back and be proud of the fight we've waged - like so many before me and unfortunately, many more to come.
I'm grateful for my friends and family. Most especially - my wonderful husband Alan, who even refers to this experience as 'our chemo experience'. Thank you for being by my side - in the good times and most especially the bad. I love you. My sweet kids who are taking such good care of their Mama...and my dear friends and extended family who do not let me walk this path alone. I've never felt so 'buoyed up' and supported.
Thank you. The next hurtle will be losing my hair and then treatment #2 on December 6th. I'll keep you posted.
Alan and I were anxious that morning. I ate a light breakfast of oatmeal a few hours in advance and numbed my port with the prescription cream for 45 minutes. We then drove together and talked about our nerves and hopes for the upcoming experience.
The best part of the day was getting the drain removed. What a great feeling to not have a tube coming out of me for the first time in months! We then went to the infusion area. There was only one other patient and the chairs are located in a nice sunny area. I'm not going to lie, it felt a bit like going to the electric chair or maybe more accurately, going in for a lethal injection as I eased into the big recliner chair.
Our nurse, Melinda started the first step by withdrawing blood from my port. She is very nice and the only nurse at this facility who administers the chemotherapy. Her South Carolina accent is sweet and reassuring. Melinda started the IV with three different types of anti-nausea medications. They took about an hour to process. The longest part of the experience. At this point, we were ready for chemo and they started with Adrimyacin also known as 'The Red Devil'. They had to manually insert this into the vein and so three large syringes with bright red medicine (It looked like red jello before it thickens) was slowly injected. When that was finished, I took a bathroom break and the first side effect (red urine) was already there. We then spent another 30 minutes getting the final drug through IV -Cytoxan. I could smell the chemicals in my system - and that smell has stayed with me for several days.
We were done for the day. Alan had to go to work so I was put in the care of my friend, Frankie. We ate a light lunch and settled down to watch a movie but the side effects soon came on with nausea and some fatigue. I went to bed and started my oral anti-nausea medications. When Brittany came home with Brianna from USU, they took over "Mama babysitting duty". It was a long night for Alan who faithfully administered the anti-nausea pills throughout the night. He set up a schedule and set his alarm clock to ensure I didn't lapse.
By morning, we had survived the worst of things. Brittany took me back to the clinic and I received the Neulasta shot which is a very expensive medication used to boost my white blood cell count. I was still nauseous and slept on and off with all the meds in my system. The next morning, I felt like I had been hit by a truck. Muscle aches in my neck and pelvis and the feeling of needing to urinate constantly. Uncomfortable, it was a long third night.
Thanksgiving started better and I was able to sit with Alan and my sister while they made dinner at least for the most part. I was tired and still sore but less so than the day before. I was also able to stop the anti-nausea meds and eat more than the previous days. It was nice to visit with family in a low key setting.
Today, I'm tired but feeling good otherwise. Alan and the girls bought the Christmas tree and decorated the house with me securely nestled on the couch. I was able to clean out the dishwasher and visited with Alan's brother Gary and his cute family. My stamina and overall health seems to be slowly improving. No nap today...which hopefully means a deep, restful sleep.
My goal with this blog is to continue being open and honest about my experience. I hope it helps all my loved ones and friends to know what is going on without censure. While I wish I was brave and full of constant grace - I know that will not be the case. It was rough and there was a moment where I started to consider/calculate my survival odds if I only did a few treatments and not all eight. It does helps to know the worst passes as time goes by. Looking forward to this being a distant memory and hopefully we will be able to stand back and be proud of the fight we've waged - like so many before me and unfortunately, many more to come.
I'm grateful for my friends and family. Most especially - my wonderful husband Alan, who even refers to this experience as 'our chemo experience'. Thank you for being by my side - in the good times and most especially the bad. I love you. My sweet kids who are taking such good care of their Mama...and my dear friends and extended family who do not let me walk this path alone. I've never felt so 'buoyed up' and supported.
Thank you. The next hurtle will be losing my hair and then treatment #2 on December 6th. I'll keep you posted.
Friday, November 16, 2012
Ready to Start Chemo
As promised, the past two weeks have been a bit like watching paint dry with lots of rest and various chores to prepare for chemotherapy.
The highlights - We've visited with various friends and family. The wig has been purchased (a fun adventure with good friends). It has been styled (another good afternoon with a dear friend). I have a couple of hats to wear. Christmas shopping is started but not quited finished. To occupy myself and try to stay quiet, Brittany and I made homemade Christmas and Thank you cards. Craftiness is not a talent but it was a great distraction. If you are a recipient of one of them...please look at them and understand their origin.
My last surgical drain (aka Francis Ferdinand) has been slow to finish up its job. Most people are able to have the last drain removed after 2 weeks but FF has been stubborn. At the 5 week mark, it is still going strong and draining more fluid than it should. Typically, they wait for the drain to slow down to less than 30 cc in a 24 hour period for 48 hours and then remove it. I've been consistent at 50-60 cc per day. Yesterday - it decided to have some fun and drained a whopping 148 cc in a 24 hour period. This came with a low grade fever and knocked me down a bit.
My biggest concern with all the unexpected action of the drain was that chemotherapy would be delayed further. It is hard to explain but I am anxious to start this journey or more accurately to finish it...and the only way to finish it is to start.
We met with my plastic surgeon this morning and I'm happy to say, he was supportive of chemotherapy starting on Monday, November 19th but the compromise was to keep the drain in until the day of the infusion. I'm to sit quietly and not exert myself this weekend. <insert eye roll> I did my best to convince Dr Agarwal that taking the drain out today was a good idea...so I can heal the open wound before chemo...but he didn't fall for my extensive 'powers of persuasion'. I think I like him all the more because of that. I'll take the compromise of Monday and run with it.
Thanksgiving will be a quiet affair. Dawn and Jim (my brother and sister) will be over with my sister's husband and son. Dawn has agreed to come over and help my husband and kids make the meal just in case my reaction to chemo impacts the holiday. According to my oncologist - I can expect to lose my hair around the 10 day mark. After this first infusion, my schedule will be every two weeks and on Thursdays. The second treatment will be on December 6th.
Although I'm tired of the drain and frustrated by the speed of things - I'm in good spirits. We are so lucky to have such a great support system. Thank you all. We'll keep you posted on how things go.
The highlights - We've visited with various friends and family. The wig has been purchased (a fun adventure with good friends). It has been styled (another good afternoon with a dear friend). I have a couple of hats to wear. Christmas shopping is started but not quited finished. To occupy myself and try to stay quiet, Brittany and I made homemade Christmas and Thank you cards. Craftiness is not a talent but it was a great distraction. If you are a recipient of one of them...please look at them and understand their origin.
My last surgical drain (aka Francis Ferdinand) has been slow to finish up its job. Most people are able to have the last drain removed after 2 weeks but FF has been stubborn. At the 5 week mark, it is still going strong and draining more fluid than it should. Typically, they wait for the drain to slow down to less than 30 cc in a 24 hour period for 48 hours and then remove it. I've been consistent at 50-60 cc per day. Yesterday - it decided to have some fun and drained a whopping 148 cc in a 24 hour period. This came with a low grade fever and knocked me down a bit.
My biggest concern with all the unexpected action of the drain was that chemotherapy would be delayed further. It is hard to explain but I am anxious to start this journey or more accurately to finish it...and the only way to finish it is to start.
We met with my plastic surgeon this morning and I'm happy to say, he was supportive of chemotherapy starting on Monday, November 19th but the compromise was to keep the drain in until the day of the infusion. I'm to sit quietly and not exert myself this weekend. <insert eye roll> I did my best to convince Dr Agarwal that taking the drain out today was a good idea...so I can heal the open wound before chemo...but he didn't fall for my extensive 'powers of persuasion'. I think I like him all the more because of that. I'll take the compromise of Monday and run with it.
Thanksgiving will be a quiet affair. Dawn and Jim (my brother and sister) will be over with my sister's husband and son. Dawn has agreed to come over and help my husband and kids make the meal just in case my reaction to chemo impacts the holiday. According to my oncologist - I can expect to lose my hair around the 10 day mark. After this first infusion, my schedule will be every two weeks and on Thursdays. The second treatment will be on December 6th.
Although I'm tired of the drain and frustrated by the speed of things - I'm in good spirits. We are so lucky to have such a great support system. Thank you all. We'll keep you posted on how things go.
Friday, November 2, 2012
Just Fighting Breast Cancer - nothing else
We are slowly making progress and checking things off the list.
The important milestones of the week were speaking with Dr. Ann Patridge (well known East Coast Oncologist) on the phone Tuesday, my PET scan on Wednesday, meeting the new Oncologist on Thursday and the follow up with my Plastic Surgeon (Agarwal) today.
Dr. Patridge called on Tuesday evening and we quickly discussed my case as she drove home in a rainstorm. She did help me understand better why TC was not a chemotherapy treatment recommended by the Huntsman Cancer Board for me. Bottom-line, like it or not, my cancer case is too advanced and needs a little extra 'oomph' to ensure it gets the job done. She also explained the TAC or AC/T treatments are very geographical in their use - TAC West Coast and AC/T East Coast. She described them as two different receipes for the same cookie. The end result is the same but the ingredients and how they are added together are just slightly different. It gave me some peace of mind to know that these two treatments are 'potent' and although likely to make me pretty sick - it truly is the best course of action.
The PET scan was interesting. Brittany drove me to the appointment. We had the Cancer Insititue use my brand new port prior to the appointment and the IV was quick and painless. Once we checked in, they didn't allow Brittany past the waiting room as they wanted me to be 'quiet'. No books, iPads or any other activities were allowed. The put me in a dimly lit room, injected my IV with radioactive sugar and then gave me two large bottles of chalky, white liquid (berry flavored?) to drink. I sat in the recliner, covered in cozy warm blankets and sipped my 'yummy' drink for 70 minutes. In the end - I only made it through 11/2 bottles due to the imminent danger of throwing up. The PET scan itself was quick and easy. They injected some contrast dye which gave me a warm sensation throughout my body. I was a little nauseous and shaky when it was over but Brittany and I took our time. We went up to one of the two lovely restaurants at the top of the hospital and slowly ate/drank until I was ready to head out. The views of Salt Lake City are pretty spectacular and I had great company.
Afterwards, she allowed me to visit my friends at work. I just wanted to say 'Hi' and let them know I was thinking about them as they've been working through a 'Level 3' irregular operation with Hurricane Sandy hitting the east coast. Not good when you are based out of New York City!! It was great seeing everyone but I so much wanted to dive into things and pitch in. Brittany dragged me home and made sure I rested that evening. Hurricanes are so much more exciting than cancer!! Sick and wrong - but I miss the adrenaline and lack of sleep associated with a good irregular operation.
Thursday, we met with Dr. Patricia Legant at Daybreak. The facility is a little 'cozier' than the massive Huntsman Cancer Institute (but they are affliated), brand spankin' new and so very close to home! Dr. Legant was perfect. She was personable, thorough and no-nonsense. I liked her very much. She even wrote upside down on the paper they used on the patient bed to explain things. Dr. Legant was trained on the East Coast and actually prefers the AC/T chemotherapy cocktail which is the same as Dr. Partridge. She stated it was a little better tolerated by patients as it breaks up the dosages instead of giving three medications at the same time. It will be administered every two weeks for 16 weeks. Much to my displeasure, she does insist I wait to start chemotherapy until I'm well healed from surgery. The very reasonable explanation is that the chemotherapy will inhibit the positive cell regeneration for healing. That means my chemo date won't be set for another two weeks. UGH. I seriously just want to get this 'party' started so I can get back to normal as fast as possible but I'm putting on my big girl pants - and trying to exercise patience and good judgement. So - we are looking around the week of Thanksgiving before I'm going to start treatment. Guess I better start on my Christmas shopping sooner rather than later. Dr. Legant also gave me the VERY good news that the PET scan came back clean. No other cancer or issue was detected in my body - so I'm fighting Breast Cancer and nothing else. It was a relief to hear this news as I've been on pins and needles about the possibility that this had gone beyond which would have changed the scope of the situation immensely.
Finally - today I met with Dr. Agarwal, my plastic surgeon. He verified that the drain is still not ready to come out and is still draining more than double the amount it can for removal. So - my pet drain stays for the foreseeable future. After almost two months of drains (breast lift and then mastectomy) - I can say I'm growing weary of it. Keeping the drain in until it is ready is the right thing to do for proper healing and we want to ensure that I'm as healed and healthy as possible before chemo starts...so I'll continue to exercise my patience. If I become emotionally attached to the drain - I may end up naming him. Francis or Ferdinand...not sure yet. Dr. Agarwal did have saline added to my expander. This is my first expansion since surgery and it now has about 200 ccs. It was fascinating to watch. The expander has a metal plate near the diaphram opening which they located with a magnet. They marked the spot and inserted a very large needle. I didn't feel a thing as the area is numb from surgery! They pulled back on the needle and a bit of blue water came out. They said this indicated they were in the right spot. Saline was put in until the area became 'tight'. Very simple and painless. The first steps on the long road to reconstruction.
All is well here as we continue to prepare and I continue to heal. We have so much support and love. It is amazing. Thank you all!! We'll continue to keep you posted but things are going to be a bit slow (like watching paint dry) for a little bit. The action should pick up again as the holidays get closer. Our love and gratitude to you all.
The important milestones of the week were speaking with Dr. Ann Patridge (well known East Coast Oncologist) on the phone Tuesday, my PET scan on Wednesday, meeting the new Oncologist on Thursday and the follow up with my Plastic Surgeon (Agarwal) today.
Dr. Patridge called on Tuesday evening and we quickly discussed my case as she drove home in a rainstorm. She did help me understand better why TC was not a chemotherapy treatment recommended by the Huntsman Cancer Board for me. Bottom-line, like it or not, my cancer case is too advanced and needs a little extra 'oomph' to ensure it gets the job done. She also explained the TAC or AC/T treatments are very geographical in their use - TAC West Coast and AC/T East Coast. She described them as two different receipes for the same cookie. The end result is the same but the ingredients and how they are added together are just slightly different. It gave me some peace of mind to know that these two treatments are 'potent' and although likely to make me pretty sick - it truly is the best course of action.
The PET scan was interesting. Brittany drove me to the appointment. We had the Cancer Insititue use my brand new port prior to the appointment and the IV was quick and painless. Once we checked in, they didn't allow Brittany past the waiting room as they wanted me to be 'quiet'. No books, iPads or any other activities were allowed. The put me in a dimly lit room, injected my IV with radioactive sugar and then gave me two large bottles of chalky, white liquid (berry flavored?) to drink. I sat in the recliner, covered in cozy warm blankets and sipped my 'yummy' drink for 70 minutes. In the end - I only made it through 11/2 bottles due to the imminent danger of throwing up. The PET scan itself was quick and easy. They injected some contrast dye which gave me a warm sensation throughout my body. I was a little nauseous and shaky when it was over but Brittany and I took our time. We went up to one of the two lovely restaurants at the top of the hospital and slowly ate/drank until I was ready to head out. The views of Salt Lake City are pretty spectacular and I had great company.
Afterwards, she allowed me to visit my friends at work. I just wanted to say 'Hi' and let them know I was thinking about them as they've been working through a 'Level 3' irregular operation with Hurricane Sandy hitting the east coast. Not good when you are based out of New York City!! It was great seeing everyone but I so much wanted to dive into things and pitch in. Brittany dragged me home and made sure I rested that evening. Hurricanes are so much more exciting than cancer!! Sick and wrong - but I miss the adrenaline and lack of sleep associated with a good irregular operation.
Thursday, we met with Dr. Patricia Legant at Daybreak. The facility is a little 'cozier' than the massive Huntsman Cancer Institute (but they are affliated), brand spankin' new and so very close to home! Dr. Legant was perfect. She was personable, thorough and no-nonsense. I liked her very much. She even wrote upside down on the paper they used on the patient bed to explain things. Dr. Legant was trained on the East Coast and actually prefers the AC/T chemotherapy cocktail which is the same as Dr. Partridge. She stated it was a little better tolerated by patients as it breaks up the dosages instead of giving three medications at the same time. It will be administered every two weeks for 16 weeks. Much to my displeasure, she does insist I wait to start chemotherapy until I'm well healed from surgery. The very reasonable explanation is that the chemotherapy will inhibit the positive cell regeneration for healing. That means my chemo date won't be set for another two weeks. UGH. I seriously just want to get this 'party' started so I can get back to normal as fast as possible but I'm putting on my big girl pants - and trying to exercise patience and good judgement. So - we are looking around the week of Thanksgiving before I'm going to start treatment. Guess I better start on my Christmas shopping sooner rather than later. Dr. Legant also gave me the VERY good news that the PET scan came back clean. No other cancer or issue was detected in my body - so I'm fighting Breast Cancer and nothing else. It was a relief to hear this news as I've been on pins and needles about the possibility that this had gone beyond which would have changed the scope of the situation immensely.
Finally - today I met with Dr. Agarwal, my plastic surgeon. He verified that the drain is still not ready to come out and is still draining more than double the amount it can for removal. So - my pet drain stays for the foreseeable future. After almost two months of drains (breast lift and then mastectomy) - I can say I'm growing weary of it. Keeping the drain in until it is ready is the right thing to do for proper healing and we want to ensure that I'm as healed and healthy as possible before chemo starts...so I'll continue to exercise my patience. If I become emotionally attached to the drain - I may end up naming him. Francis or Ferdinand...not sure yet. Dr. Agarwal did have saline added to my expander. This is my first expansion since surgery and it now has about 200 ccs. It was fascinating to watch. The expander has a metal plate near the diaphram opening which they located with a magnet. They marked the spot and inserted a very large needle. I didn't feel a thing as the area is numb from surgery! They pulled back on the needle and a bit of blue water came out. They said this indicated they were in the right spot. Saline was put in until the area became 'tight'. Very simple and painless. The first steps on the long road to reconstruction.
All is well here as we continue to prepare and I continue to heal. We have so much support and love. It is amazing. Thank you all!! We'll continue to keep you posted but things are going to be a bit slow (like watching paint dry) for a little bit. The action should pick up again as the holidays get closer. Our love and gratitude to you all.
Saturday, October 27, 2012
A Marathon of Appointments
A marathon of appointments before treatment starts.
It has been a busy week of doctor appointments and tests. We started with a conference call early Sunday morning with Dr. Neumayer to answer our questions about the pathology report. During that call she clarified that the lymph node invasion was actually a macrometasis and not a micrometasis but just barely. Together we determined that some of our questions and my case should go before the Huntsman Cancer Board for review.
They met on Thursday and discussed my case.
Yesterday, I had same day surgery to insert a port on the right side of my upper chest. It was an experience to say the least. I was sedated but not put under completely. I remember the surgery in great detail including the fact that a young doctor who looked an incredible amount like Doogie Howser stitched me up. The port will allow them to administer chemo and draw blood without having to insert an IV or stick me with a needle. I'm sore from the experience but they assure me I'll be grateful as the treatment gets going.
I was also able to have one of the two drains removed from my mastectomy surgery yesterday. It is now much easier to hide the remaining drain under clothing and less challenging while I'm sleeping so I'm SO HAPPY to have one gone. It will likely be another week before the other is removed and it has to be out before I can start chemotherapy.
Also this week - I have a PT/CT scan of my body to ensure we don't have any other cancers to worry. Dr. Neumayer stated that the odds are only about 5% that this is the case so I'm hopefully to move quickly through that checkpoint.
I'm also meeting with my dentist to ensure my teeth are ready for the damage the chemo will inflict on them. He's making fluoride trays to protect them. Last but not least, I hope to go wig shopping with friends to prepare for the loss of hair. My sweet hairdresser has agreed to shave my head while her shop is closed shortly after my first treatment. Alan plans to shave his head at the same time as a symbol of his support. Such a cutie. I love that man.
I've had lots of questions from everyone asking how I'm doing. Honestly - 90% of the time I'm doing really well. Optimistic and ready for the battle. I do have my bad days when I wish this was either over or just a bad dream. I get angry. I get emotional and weepy from time to time but I think overall I'm staying positive.
Many thanks again for all the love and support. The notes, cards, flowers, phone calls and text messages have been wonderful. We love you all.
It has been a busy week of doctor appointments and tests. We started with a conference call early Sunday morning with Dr. Neumayer to answer our questions about the pathology report. During that call she clarified that the lymph node invasion was actually a macrometasis and not a micrometasis but just barely. Together we determined that some of our questions and my case should go before the Huntsman Cancer Board for review.
They met on Thursday and discussed my case.
- They changed my stage from 3A to 2B. My largest tumor was 1mm smaller than 5 cm and thus the change. They also reviewed whether or not I needed to have more lymph nodes removed and thankfully they determined this was unnecessary.
- They were divided on whether or not I should remove the right breast with the discovery of the 'surprise' tumor in my left breast. That will a decision for Alan and I to make together but will only take place after chemo/radiation are complete. I'm leaning toward removing the other breast but am not anxious to repeat that surgery in the near term.
- Probably one of the biggest items we wanted reviewed was the use of a drug called Adrimyacin in my chemo 'cocktail'. It has some potentially bad side effects including heart damage which is particularly concerning to us. Unanimously - they all recommended that this drug in the TAC cocktail was the way to go given the large size of my tumor, close margins and Grade 3 cells. To that end - I had a baseline Echo of my heart this week so we can monitor any impact of the drugs.
Yesterday, I had same day surgery to insert a port on the right side of my upper chest. It was an experience to say the least. I was sedated but not put under completely. I remember the surgery in great detail including the fact that a young doctor who looked an incredible amount like Doogie Howser stitched me up. The port will allow them to administer chemo and draw blood without having to insert an IV or stick me with a needle. I'm sore from the experience but they assure me I'll be grateful as the treatment gets going.
I was also able to have one of the two drains removed from my mastectomy surgery yesterday. It is now much easier to hide the remaining drain under clothing and less challenging while I'm sleeping so I'm SO HAPPY to have one gone. It will likely be another week before the other is removed and it has to be out before I can start chemotherapy.
Also this week - I have a PT/CT scan of my body to ensure we don't have any other cancers to worry. Dr. Neumayer stated that the odds are only about 5% that this is the case so I'm hopefully to move quickly through that checkpoint.
I'm also meeting with my dentist to ensure my teeth are ready for the damage the chemo will inflict on them. He's making fluoride trays to protect them. Last but not least, I hope to go wig shopping with friends to prepare for the loss of hair. My sweet hairdresser has agreed to shave my head while her shop is closed shortly after my first treatment. Alan plans to shave his head at the same time as a symbol of his support. Such a cutie. I love that man.
I've had lots of questions from everyone asking how I'm doing. Honestly - 90% of the time I'm doing really well. Optimistic and ready for the battle. I do have my bad days when I wish this was either over or just a bad dream. I get angry. I get emotional and weepy from time to time but I think overall I'm staying positive.
Many thanks again for all the love and support. The notes, cards, flowers, phone calls and text messages have been wonderful. We love you all.
Thursday, October 18, 2012
Pathology Report and the Silver Lining
The silver lining - the breast lift saved my life.
I had the mastectomy of my left breast last Friday, October 12th. Alan did a great job relaying that experience in his post. It was a little frightening but we knew I was receiving the very best of care and was in the best possible hands. We ended up spending two nights in the hospital to ensure we had the correct medication to manage the pain. It was a lovely room and the staff very accommodating but I was grateful to get back home and sleep in my own bed. Recovery has been slow but sure. Lots of resting and taking it easy. My awesome husband and sweet kids have been playing nursemaids and doting on their Mama.
Today, Dr. Neumayer called with the results of the pathology report. We had been hoping that we'd be able to get by with a single mastectomy and hormone therapy but it appears it will be a tougher, longer battle after all. They found three masses in the left breast. Two of the three masses ended up being cancerous with the largest one measuring more than 5 centimeters and the second just over 1 centimeter. Also - after further testing, they did find a microscopic invasion of one of my lymph nodes. All that said - I'll be undergoing both chemotherapy and radiation to be followed by breast reconstruction and hormone therapy for Stage 3a breast cancer. Not the news we were hoping to hear but the silver lining called out by the doctor - the breast lift most definitely saved my life!! I ever so grateful for that life changing decision.
So - next week we'll meet with the oncologist to discuss the treatment plan. In true 'Nannette' fashion - I want to get it started as soon as possible - so we can get it over with as soon as possible. They'll be charts and spreadsheets to manage the biggest project of my life...maybe even a Gant Chart. I'll keep you all posted.
Thank you for all the kind emails, voice mails and text messages. They've truly lifted my spirits. Having everyone in my JetBlue family dress up in their 'Say No, No to Breast Cancer' T-shirts on my last day in the office as well as on the day of surgery was touching. I truly feel like I have an army fighting this cancer alongside me.
I had the mastectomy of my left breast last Friday, October 12th. Alan did a great job relaying that experience in his post. It was a little frightening but we knew I was receiving the very best of care and was in the best possible hands. We ended up spending two nights in the hospital to ensure we had the correct medication to manage the pain. It was a lovely room and the staff very accommodating but I was grateful to get back home and sleep in my own bed. Recovery has been slow but sure. Lots of resting and taking it easy. My awesome husband and sweet kids have been playing nursemaids and doting on their Mama.
Today, Dr. Neumayer called with the results of the pathology report. We had been hoping that we'd be able to get by with a single mastectomy and hormone therapy but it appears it will be a tougher, longer battle after all. They found three masses in the left breast. Two of the three masses ended up being cancerous with the largest one measuring more than 5 centimeters and the second just over 1 centimeter. Also - after further testing, they did find a microscopic invasion of one of my lymph nodes. All that said - I'll be undergoing both chemotherapy and radiation to be followed by breast reconstruction and hormone therapy for Stage 3a breast cancer. Not the news we were hoping to hear but the silver lining called out by the doctor - the breast lift most definitely saved my life!! I ever so grateful for that life changing decision.
So - next week we'll meet with the oncologist to discuss the treatment plan. In true 'Nannette' fashion - I want to get it started as soon as possible - so we can get it over with as soon as possible. They'll be charts and spreadsheets to manage the biggest project of my life...maybe even a Gant Chart. I'll keep you all posted.
Thank you for all the kind emails, voice mails and text messages. They've truly lifted my spirits. Having everyone in my JetBlue family dress up in their 'Say No, No to Breast Cancer' T-shirts on my last day in the office as well as on the day of surgery was touching. I truly feel like I have an army fighting this cancer alongside me.
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| My JetBlue Army |
Saturday, October 13, 2012
It has been a bit of a roller coaster ride
It has been a bit of a roller coaster ride; but, our hopes are high.
Yesterday was surgery day. We started out the day with feelings of hope and apprehension. Upon arriving at the hospital at 10:15 AM, we began with the typical check in, pre-op IV, blood draws, and etc. By 2:00 PM Nannette was ready for surgery with pain meds in her system, an epidural type block (paravertebral block), a low level radioactive dye injected into her left breast to detect any lymph node invasion (investigated during surgery); and, discussions with the anesthesiologist about her uvula and pain control, and both surgeons about the procedures (single left mastectomy & preliminary breast reconstruction/expander placement).
Within an hour, the great news that there has been no lymph node invasion!!! What a relief! We had been under the impression that this meant no chemotherapy would be necessary, with the exception of Tamoxifen (an oral, and less invasive form of chemo); however, when Dr. Neumayer completed her part of the surgery, we found out that until the pathologist can check the actual size of the tumor, and the "margins"/how far into the breast tissue the cancer has spread, we won't know whether chemo and/or radiation will be necessary. Those findings won't be available for another week! So, we are waiting again. We also found out that there is no way to save the nipple; because, this surgery was so close to the breast lift, and the nipple hasn’t had the time to recover.
After Dr. Neumayer completed the removal of the breast tissue; taking extra tissue to insure all of the margins were clear, Dr. Agarwal took over to place the expander behind the pectoral muscle, and start the preliminary breast reconstruction. After 4 hours of surgery, they were done, and were pleased with the results. By 8:00 PM we were into the VIP suite (how did we get so fortunate?), and settling in for the night. A long, but successful day, at one of the best cancer centers around. They have taken good care of our girl.
This morning has been a flurry of activity; with visits for nurses, residents/interns, and doctors. Nannette is recovering well. She has had the paraverteral block removed, the IV’s & monitors removed, and we are working on managing the pain. If we are able to get the pain managed we can leave the hospital this evening.
We look forward to the pathology report; and whether chemo and/or radiation will be needed. If chemo is required, they will start as soon as the surgical drains have been removed (2 – 3 weeks). They will also start the expansion process; where they inject a saline solution into the expander, a little bit at a time until the pectoral muscle has been stretched enough to insert the permanent implant. If radiation is also required, they will wait until the chemo is complete, and the expander has reached the desired volume; the implant would not be inserted until the radiation is done, and a portion of the latissimuss muscle is brought up to the breast area to bring a new blood source to the radiated area. If radiation is all that is required, they will have to complete the expansion before the radiation can begin.
We are very hopeful for good news, and appreciate all of the support, thought, and prayers.
Yesterday was surgery day. We started out the day with feelings of hope and apprehension. Upon arriving at the hospital at 10:15 AM, we began with the typical check in, pre-op IV, blood draws, and etc. By 2:00 PM Nannette was ready for surgery with pain meds in her system, an epidural type block (paravertebral block), a low level radioactive dye injected into her left breast to detect any lymph node invasion (investigated during surgery); and, discussions with the anesthesiologist about her uvula and pain control, and both surgeons about the procedures (single left mastectomy & preliminary breast reconstruction/expander placement).
Within an hour, the great news that there has been no lymph node invasion!!! What a relief! We had been under the impression that this meant no chemotherapy would be necessary, with the exception of Tamoxifen (an oral, and less invasive form of chemo); however, when Dr. Neumayer completed her part of the surgery, we found out that until the pathologist can check the actual size of the tumor, and the "margins"/how far into the breast tissue the cancer has spread, we won't know whether chemo and/or radiation will be necessary. Those findings won't be available for another week! So, we are waiting again. We also found out that there is no way to save the nipple; because, this surgery was so close to the breast lift, and the nipple hasn’t had the time to recover.
After Dr. Neumayer completed the removal of the breast tissue; taking extra tissue to insure all of the margins were clear, Dr. Agarwal took over to place the expander behind the pectoral muscle, and start the preliminary breast reconstruction. After 4 hours of surgery, they were done, and were pleased with the results. By 8:00 PM we were into the VIP suite (how did we get so fortunate?), and settling in for the night. A long, but successful day, at one of the best cancer centers around. They have taken good care of our girl.
This morning has been a flurry of activity; with visits for nurses, residents/interns, and doctors. Nannette is recovering well. She has had the paraverteral block removed, the IV’s & monitors removed, and we are working on managing the pain. If we are able to get the pain managed we can leave the hospital this evening.
We look forward to the pathology report; and whether chemo and/or radiation will be needed. If chemo is required, they will start as soon as the surgical drains have been removed (2 – 3 weeks). They will also start the expansion process; where they inject a saline solution into the expander, a little bit at a time until the pectoral muscle has been stretched enough to insert the permanent implant. If radiation is also required, they will wait until the chemo is complete, and the expander has reached the desired volume; the implant would not be inserted until the radiation is done, and a portion of the latissimuss muscle is brought up to the breast area to bring a new blood source to the radiated area. If radiation is all that is required, they will have to complete the expansion before the radiation can begin.
We are very hopeful for good news, and appreciate all of the support, thought, and prayers.
Thursday, September 27, 2012
Can't Stop Smiling!!
We officially have all the test results back and I can't stop smiling!! All the positive thoughts and prayers are working.
The BRC (genetic testing) and HER2 (cancer growing accelerant) are negative. Given this news, we are feeling pretty good about having just a single mastectomy with tissue expander, lymph node biopsy and reconstruction to follow. As long as the lymph node biopsy and margins surrounding the cancer are 'clear', I may be able to avoid chemotherapy.
I will be participating in clinical trial for the Tamoxifen drug. This is the medication that will treat and remaining microscopic cancer left over from the surgery. It requires that I take it for 5 years and may cause early menopause, nausea and vomiting. The trial will be taking the medication a week before surgery and then 2 weeks afterwards. They are trying to determine two things: Will taking the drug for 7 days shrink the size of the tumor? And, if so, will the knowledge that the drug is this effective motivate me to continue taking it for the full 5 years despite the potential side effects? If Chemo is necessary, I'll stop taking it as you don't take it in tandem with any other treatments but as a follow up.
Surgery is on Friday, October 12th. It will require a day or two in-patient hospital stay and some serious recovery time. Alan will update the next posting and let you know how everything went and the results of the biopsy.
In preparation for the surgery and battle to come, Alan and I are heading out of town this weekend to San Diego. Gathering some sunshine and relaxing. He is only able to stay for the weekend due to his work schedule but Brittany is going to 'swap him out' and play with me for a few extra days. Looking forward to storing away a little extra sunshine!!
We want to thank all of our friends and family for the overwhelmingly wonderful support. We've definitely felt like we have been 'lifted along' throughout this experience. To my family - thank you for your strength. It is not hard to see where mine came from. Love you all!
My JetBlue family has been amazing. Special thanks to Frankie for her incredible, incredible support. It is extremely rare to consider your boss among your best friends. Justin and Jill - your willingness to be our sounding board and 'helpdesk' for our many questions (both physical and emotional) has been invaluable. Traci and Danny - for your love and positive messages...as well as for picking up the slack for me at work as needed the past couple of weeks (along with Justin)...thank you!! To those who've given us hugs and kind words...you are wonderful. It truly has been an amazing experience. There are so many who have reached out and offered their love. You've made all the difference.
The BRC (genetic testing) and HER2 (cancer growing accelerant) are negative. Given this news, we are feeling pretty good about having just a single mastectomy with tissue expander, lymph node biopsy and reconstruction to follow. As long as the lymph node biopsy and margins surrounding the cancer are 'clear', I may be able to avoid chemotherapy.
I will be participating in clinical trial for the Tamoxifen drug. This is the medication that will treat and remaining microscopic cancer left over from the surgery. It requires that I take it for 5 years and may cause early menopause, nausea and vomiting. The trial will be taking the medication a week before surgery and then 2 weeks afterwards. They are trying to determine two things: Will taking the drug for 7 days shrink the size of the tumor? And, if so, will the knowledge that the drug is this effective motivate me to continue taking it for the full 5 years despite the potential side effects? If Chemo is necessary, I'll stop taking it as you don't take it in tandem with any other treatments but as a follow up.
Surgery is on Friday, October 12th. It will require a day or two in-patient hospital stay and some serious recovery time. Alan will update the next posting and let you know how everything went and the results of the biopsy.
In preparation for the surgery and battle to come, Alan and I are heading out of town this weekend to San Diego. Gathering some sunshine and relaxing. He is only able to stay for the weekend due to his work schedule but Brittany is going to 'swap him out' and play with me for a few extra days. Looking forward to storing away a little extra sunshine!!
We want to thank all of our friends and family for the overwhelmingly wonderful support. We've definitely felt like we have been 'lifted along' throughout this experience. To my family - thank you for your strength. It is not hard to see where mine came from. Love you all!
My JetBlue family has been amazing. Special thanks to Frankie for her incredible, incredible support. It is extremely rare to consider your boss among your best friends. Justin and Jill - your willingness to be our sounding board and 'helpdesk' for our many questions (both physical and emotional) has been invaluable. Traci and Danny - for your love and positive messages...as well as for picking up the slack for me at work as needed the past couple of weeks (along with Justin)...thank you!! To those who've given us hugs and kind words...you are wonderful. It truly has been an amazing experience. There are so many who have reached out and offered their love. You've made all the difference.
Truly - we are so incredibly lucky to have each of you in our lives.
Saturday, September 22, 2012
Patience, The Results and a Partial Plan
In case there has ever been any doubt, patience is not amongst the virtues I possess.
It has been a long week waiting for the biopsy results and the phone call that would give us our game plan for treatment. When the pathology report was not back late Friday afternoon, I was sure we'd be waiting through the weekend for the results. However, the truly awesome Dr. Neumayer, called late last night and we discussed the report with us over the phone. I think she gets my type 'A' personality.
As expected, the 3.4 centimeter mass detected in the MRI is invasive cancer. To our surprise, it was Invasive Ductal Carcinoma with Lobular tendencies. What? In all our reading, we've not come across this particular diagnosis and based on the previous pathology report, we thought it was Invasive Lobular Carcinoma. Dr. Neumayer thinks its fascinating. In the end, it doesn't matter what it is called as the beginning of the treatment plan is the same.
The pathology report still showed a strong hormone receptor result which is great news. The hormone treatment (Tamoxifen) for 5 years will produce great results. Dr. N offered us a clinical trial which was designed to track if women, who take the treatment before surgery and see a positive impact on tumor size, stick with the full 5 years of treatment. We agreed and will start that at least 7 days before surgery.
Another change from the last pathology report to this one was the HER2 result. It is now 'borderline' and will be sent for some extended testing. This is the 'accelerant' which, when positive, causes cancer to grow like gas on a fire. If that comes back positive, chemotherapy will be necessary.
So - the beginnings of a plan! We are scheduled for surgery on October 12th. They'll verify that Dr. Agerwal (plastic surgeon) is available but that is our date right now. Given a variety of factors from the test results, mastectomy of the left breast is a definite. We are going to do a mammogram of the right breast to ensure it is not necessary to remove that one as well but, for the moment, that doesn't appear to be the case. The results of the BRAC test will also help us with that decision. At the time of surgery, they will test the Sentinel Lymph Node. If they find any cancerous cells, chemotherapy after surgery will be necessary.
So to recap - what gets me chemo? If the HER2 comes back positive from the extended testing or if the Sentinel Lymph Node has any cancerous cells when it is tested during surgery. We are pleasantly surprised that it isn't already a given and are accepting all positive energy, healing thoughts and prayers on this one!!
Probably the best piece of news for me was when Dr. N reassured us that the breast lift was truly a miraculous intervention and not an unfortunate complication. She said that it was highly unlikely that even this year's mammogram alone would have indicated that this lump was cancer and that it would have likely grown for a least another year before it was caught. It was the fact that Dr. Saltz (my sweet plastic surgeon) happened to remove those two small pieces (each millimeters in size) that may have saved my life in the long run or at least spared us a more challenging fight.
Many thanks to all our wonderful family and friends who've been by our side on this crazy roller coaster of a journey. We've appreciated the hugs and hand holding...and most especially the patience (a virtue we appreciate that others possess) as we've been a bit 'hyperfocused' on gearing up for the battle to come. We love you all.
Tuesday, September 18, 2012
One Step Closer
Three appointments in one day equals one tired lady and a three hour nap.
We arrived at the Huntsman Cancer Institute at 0800 and started the day with an ultrasound to determine if we could do the biopsy today. The results looked clear and thus they could do the biopsy today but with another appointment at 0900, we had to wait until afterwards to allow enough time for the procedure.
At 0900 we met with Dr. Agerwal's (plastic surgeon) assistant for the first hour and another 30 minutes with Dr. Agerwal. We discussed the process for reconstruction with mastectomy. He was very informative and describe that the phased approach to the process in great detail. While it varies depending upon the treatment plan we ultimately land on - we can expect that they will put the tissue expanders in behind the chest muscle at the time of the mastectomy. This will result in a one to two day stay in the hospital. For approximately three months, they will continue to expand and stretch the muscle wall to the appropriate size and when we are through treatment, another surgery would take place to insert the implants. As long as it does not have any additional complications (meaning Radiation therapy), we can expect an outpatient experience. With Radiation, it will require some muscle relocation (likely from the back) and thus another one to two day hospital stay. The bad news, because of my breast lift, I will likely not be able to save my nipples during the process. The good news, we can do some reconstruction (including tattooing) which will give the appearance of nipples.
After this appointment, we were finally able to do the biopsy. I was a little nervous about the procedure but they did a great job numbing the area and made sure I knew what was happening during each step. I did feel some discomfort at one point but they were quick to reapply the numbing agent and things proceeded with no more pain. It was fascinating to watch the process on the ultrasound. They took four tissue samples and then inserted a titanium 'clip'. This clip is to ensure we always know where the tumor was should the medications (Chemo) shrink it significantly.
At the end of the procedure, I asked the doctor (Matthew Morgan) what his opinion was on the likelihood that this mass was cancerous based on his experience. He stated that I should prepare myself for the likelihood that it is cancerous because it looks 'suspicious'. I asked what made it look suspicious and he pointed out the uneven or jagged circumference of the mass. So, we are preparing to hear that this is a cancerous mass within the next 3-4 days. But - so much better to be prepared than surprised!! So - I was grateful for his honesty.
Our final appointment was with the genetic counselors. We reviewed my family's medical history. (Let me tell you, that was no easy feat to compile!!) Together, we determined that a BRAC1/BRAC2 genetic test would be beneficial in helping us make the decision as to whether or not a single or double mastectomy was the best direction to go. It will also let me know what the risk is to my beautiful daughters, sister and mother for this same cancer and possibly ovarian/uterine cancers for all of us. We also decided to donate additional blood samples, and tissue samples from my biopsy, for research. Anything to help with finding the cure!! My hope is that by doing additional genetic testing, I can offer peace of mind to my loved ones in the future or ensure they are carefully watching for these cancers.
Tired and sore, I will confess to a three hour nap after these appointments. It was heavenly and a bit decadent.
We are now waiting again for the final results of the biopsy and to hear Dr. Neumayer's recommendation for treatment. I'm ready to move from 'discovery phase' and on to the 'execution phase' of this project. All my work friends will recognize this tendency. :)
We'll update again with the results and treatment plan (hopefully) in the next blog. We are overwhelmed by the love and support from all of you. It means so much to us. xoxo
Monday, September 17, 2012
The Beginning
The diagnosis of breast cancer came as a complete surprise.
For my 45th birthday, I took a week and a half off work and gave myself the gift of a breast lift. It was something I was looking forward to and my visit to the plastic surgeon was meant to be nothing but a routine follow up. The only thought on my mind was getting the drains out and getting back to work.
Alan was busy with work so Brittany (our 23 year old daughter) drove me to the appointment and was patiently waiting for me in the reception area. When Dr. Saltz arrived he had two of his nurses with him. They quickly checked out my drains and incisions. He sat down and reminded me that they had sent all excess tissue from the surgery to pathology . He told me the news wasn't good as the report came back that I have Breast Cancer in my left breast. Dr. Saltz was teary eyed and his nurses were crying. They had Brittany come back and I can only imagine her surprise at everyone's obvious distress but she was a rock. A bit like her Mama.
The next day, we had the presense of mind to ask for the pathology report. This is how we discovered it was Invasive Lobular Carcinoma. Only about 15% of all Breast Cancer are of this type (most are Ductal) and it can be very hard to detect as it appears as strings of cancer cells not necessarily as lumps/tumors. This explains why my mammograms over the years have not detected it. Also - the good news was we were HER2 negative (which is a bit of an accelerant in regards to cancer growth) and Estrogen/Progesterone positive (which means hormone therapy is an effective means of treating). The cancer was less than .5 Centimeters.
We felt extremely lucky to have found this hard to detect form of breast cancer so early!!
Armed with this information, we met with Dr. Leigh Neumayer at the Huntsman Cancer Institute. She is obviously brilliant as well as highly recommended by the Komen Society. Let's just say she can talk very fast and it was a good thing we came prepared, having done our homework on the topic. Her recommendation was to have an MRI at Daybreak as a mammogram might be too difficult with my recent surgery still healing. The treatment options as they currently stood were 5 years of hormone treatment (pill form) and due to the size it didn't appear that Chemotherapy would be necessary. It was even possible to make a choice between Lumpectomy with Radiation or a Mastectomy.
While we waited for the MRI appointment, we met with the Radiologist also at Daybreak. It was a nice facility and Dr. Gaffney was reassuring that the long term side effects of radiation were not a big concern. For the first time, we considered Lumpectomy with Radiation as a real option.
The MRI day came and being excessively claustrophobic, I was given Valium so the experience was pleasant despite some issues with the MRI machine. We really viewed this process as more of a formality but, to our surprise, that turned out not to be the case. The results came in on Friday and we were surprised to hear that there was a 3 Centimeter mass detected. Dr. Neumayer explained that it was possible that the surgery only 'clipped' a piece of the bigger cancer off. This changed everything. Should this turn out to be cancer, Chemotherapy is now back on the table due to the size of the 'mass'. The doctors would need to decide on whether or not chemo would come before or after the surgery.
An ultrasound and possible biopsy is scheduled for tomorrow morning (Tuesday, Sept 17th). Should the ultrasound not work...they will schedule an MRI guided biopsy later this week. We also meet with the plastic surgeon (Agerwal) and Genetic Counselors tomorrow.
We are so appreciative of the love and support of friends and family. We will continue to keep everyone posted on this blog as we learn more about the diagnosis and treatment plan that is determined. We feel lucky, blessed and loved.
For my 45th birthday, I took a week and a half off work and gave myself the gift of a breast lift. It was something I was looking forward to and my visit to the plastic surgeon was meant to be nothing but a routine follow up. The only thought on my mind was getting the drains out and getting back to work.
Alan was busy with work so Brittany (our 23 year old daughter) drove me to the appointment and was patiently waiting for me in the reception area. When Dr. Saltz arrived he had two of his nurses with him. They quickly checked out my drains and incisions. He sat down and reminded me that they had sent all excess tissue from the surgery to pathology . He told me the news wasn't good as the report came back that I have Breast Cancer in my left breast. Dr. Saltz was teary eyed and his nurses were crying. They had Brittany come back and I can only imagine her surprise at everyone's obvious distress but she was a rock. A bit like her Mama.
The next day, we had the presense of mind to ask for the pathology report. This is how we discovered it was Invasive Lobular Carcinoma. Only about 15% of all Breast Cancer are of this type (most are Ductal) and it can be very hard to detect as it appears as strings of cancer cells not necessarily as lumps/tumors. This explains why my mammograms over the years have not detected it. Also - the good news was we were HER2 negative (which is a bit of an accelerant in regards to cancer growth) and Estrogen/Progesterone positive (which means hormone therapy is an effective means of treating). The cancer was less than .5 Centimeters.
We felt extremely lucky to have found this hard to detect form of breast cancer so early!!
Armed with this information, we met with Dr. Leigh Neumayer at the Huntsman Cancer Institute. She is obviously brilliant as well as highly recommended by the Komen Society. Let's just say she can talk very fast and it was a good thing we came prepared, having done our homework on the topic. Her recommendation was to have an MRI at Daybreak as a mammogram might be too difficult with my recent surgery still healing. The treatment options as they currently stood were 5 years of hormone treatment (pill form) and due to the size it didn't appear that Chemotherapy would be necessary. It was even possible to make a choice between Lumpectomy with Radiation or a Mastectomy.
While we waited for the MRI appointment, we met with the Radiologist also at Daybreak. It was a nice facility and Dr. Gaffney was reassuring that the long term side effects of radiation were not a big concern. For the first time, we considered Lumpectomy with Radiation as a real option.
The MRI day came and being excessively claustrophobic, I was given Valium so the experience was pleasant despite some issues with the MRI machine. We really viewed this process as more of a formality but, to our surprise, that turned out not to be the case. The results came in on Friday and we were surprised to hear that there was a 3 Centimeter mass detected. Dr. Neumayer explained that it was possible that the surgery only 'clipped' a piece of the bigger cancer off. This changed everything. Should this turn out to be cancer, Chemotherapy is now back on the table due to the size of the 'mass'. The doctors would need to decide on whether or not chemo would come before or after the surgery.
An ultrasound and possible biopsy is scheduled for tomorrow morning (Tuesday, Sept 17th). Should the ultrasound not work...they will schedule an MRI guided biopsy later this week. We also meet with the plastic surgeon (Agerwal) and Genetic Counselors tomorrow.
We are so appreciative of the love and support of friends and family. We will continue to keep everyone posted on this blog as we learn more about the diagnosis and treatment plan that is determined. We feel lucky, blessed and loved.
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