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.
Friday, November 23, 2012
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.
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