It has been 11 days since my double mastectomy. It seems like a year. I am still in pain and groggy. I have to sleep hours a day as my body tries to heal.
The morning of the surgery, Michael and I went to the University of Utah to check in at 9:30 a.m. My Dad and Ellen met us there as well as Michael's sister, Maureen. Maureen is stationed in Germany for the Air Force and had planned to come to Pocatello for Christmas. She happened to come into the SLC airport at a time that coincided with the surgery so I was able to see her before surgery, which meant a lot to me.
In pre-op a nurse walking by our room saw so many camera flashes he walked by twice to make sure there wasn't a VIP in the room. I said, "I'm not a VIP, it's my Dad taking pictures." I told the kids this story later and they said, to your Dad, you are a VIP.
The anesthesiologist came in to say hello and ask about previous surgeries and the surgeon came in. I introduced him to the members of my family. Dr. N is a very pleasant man. I appreciate it that he's talked to me personally on the phone after he spoke with the tumor board and that they all agreed surgery was required for my "elusive cancer."
They allowed me a chance to say goodbye to my family, which went by so quickly, and then whisked me away to the surgery room.
I remember the oxygen mask over my face and Dr. O, the anesthesiologist, telling me to breathe deeply and then he told me they were going to give me medication to put me to sleep for the surgery.
I remember waking up in post-op. I was in a lot of pain. I cried. I knew my breasts were gone. I cannot say my pain, or my loss, were the reason for the tears.
Once I was more stable, I was moved from the University of Utah to the Huntsman Cancer Institute. Mark A., it was my first ambulance ride! I told the crew that and asked if we could make an adjustment and I could be transported in the helicopter instead. At least my humor was still intact! Upon arrival at my room, my nurse and the EMT crew said there was no bed in the room. Then, they took me to another room, and that room didn't have the appropriate electrical outlets, so we were off to look for a room for me. I could hear Michael, my Dad, and Ellie around us as we tried to fine a spot for me.
Finally, tucked in my spot, I could relax. As much as you can in a hospital. I met the night nurses. They checked the two drain tubes in my chest, set up a PCA pump that I could hit every 10 minutes, or longer if I could wait. They asked if they could look at my dressings. In my research of mastectomies, I saw women after surgery and their chests were very tightly bound with dressings, so I said yes, expecting to see the same dressings they had. I had something completely different. I had two gauze strips and I could actually see the incisions on my chest. I'd informed the surgeon and team I'm allergic to steri-strips and have had issues with stitches in the past, so they used a special glue to close the incisions. The nurses said the incisions look very good. I wasn't so sure about it. To me, the left side is very concave almost as if he'd done a radical mastectomy, and on the right side it is very puckered and doesn't look good at all. Some areas are very swollen and will even out and smooth out, according to the nurses.
After this, my pain was not controlled with the PCA pump. It actually took us days to get the right combination for me to get my pain controlled. I spent three nights in the hospital. Every member of the staff at the Huntsman was very good to me and my family. I had a gorgeous view of the city from my room.
During my stay I had visits from three friends I went to Highland High School with. Lynn Kilpatrick, Penny Tippets Coleman, and Mike Taylor. It brings tears to my eyes now, tears of love and thankfulness. It amazes me friendships we started 25 years ago are still strong. I had a beautiful view of Salt Lake City from my room.
I was discharged in time to be home for Christmas. My entire family came to our house on Christmas and it was AMAZING. I am so blessed to have a supportive and loving family. I was so excited to watch the Packers play the Bears, but I couldn't stay awake. Conor kept waking me up to make sure I was okay, but I think he also wanted someone to watch the game with him. He'd gotten me an Aaron Rodgers jersey for Christmas and I was to tired to stay awake for the game.
I had to go back to the Hunstman on December 28th to have the drain tubes removed. It hurt having them taken out, but it's great to have them out. I always had to drain them myself because Michael didn't have the stomach for it. I threw up a few times at the hospital and even since we've been home I've thrown up a few times.
When we got home from the trip to Utah on the 28th, I was a little tired and my depth perception was off, and I fell down our stairs to the basement, not once, but twice. I have to have help going up and down the stair down. And, Michael has to help me in and out of bed.
I go back to see Dr. N next week to find out the path reports and have him take a look at the incisions. Next week I also need to contact the Portneuf Cancer Center and let them know the surgery has been done, so they can get me onto the schedule to start radiation, probably in 2 weeks or a little longer.
So, on this final day of 2011, I want to talk about resolutions. It is my MAIN New Year's Resolution to be CANCER FREE in 2012! I still have to undergo radiation, a hysterectomy, and reconstruction. After that it's my goal to regain better health, mentally and physically. I want to start slow, with walking, then move to running (5k with Pam and anyone else who wants to join us). I can't wait to start hiking up City Creek and doing yoga again. Enjoying the outdoors again.
I will enjoy more time with my family and friends. I'll become a grandmother in 2012. Conor and Bonnie are expecting in June. A new little life for our family will be good.
I will become a better cook and eat a more wholesome diet. I've received several cancer-fighting cookbooks and I fully intend to use them. Fighting cancer is a full-time job in itself but I want to go back to my favorite full-time job - public health.
Happy New Year's to all of you! I feel like this coming year is going to be better for me and it's my hope it will be GREAT for all of us. Remain positive. Be Happy. Be Joyful.
Saturday, December 31, 2011
Monday, December 19, 2011
The Night Before Mastectomy
Hi all. Just a quick post. I check into the University of Utah Hospital tomorrow morning at 9:30 and surgery is scheduled at 11 a.m.
Michael and I are trying our best to relax. We're watching Monday Night Football, rather distracted by what is to come tomorrow.
Once the surgery is complete, I will be moved and admitted to the Huntsman Cancer Institute. I will be there 1-3 days.
Taking deep breaths and hoping to get a little sleep tonight. My mantra going into surgery will be peace, healing, and being cancer free in 2012.
I keep thinking of those t-shirts that say "Save the Ta-Ta's." I've always loved that shirt, but I struggle with it now because I can no longer save mine.
To my followers that are women. Please do your monthly self-breast exams and schedule your mammograms so you can savwe yours. If you find a lump - be PROACTIVE and get it checked. Trust your gut instinct until you are comfortable. I am SO GLAD I trusted my intuition about this cancer or I would be in a much worse predicament.
Gentlemen, make sure your wife is scheduling her mammograms. And remember, men can get breast cancer as well. If you have something suspicious, get it checked.
Breathing in....and breathing out......
Namaste. ~Denise
Sunday, December 18, 2011
Surgery on Tuesday, December 20, 2011
It has been a little harder for me to write this blog. It's a very emotional time for me.
Last Thursday we drove back to Utah to the Huntsman Cancer Institute and I had some tests. I had a breast MRI. I was then instructed to call the next morning at 9 a.m. because Dr. N would have been done presenting my case to the tumor board.
Not wanting to appear overly anxious I waited until about 9:08 a.m. to call. The nurse said Dr. N wanted to speak to me himself. He told me, as I'd already been informed, the biopsies were benign. However, the breast MRI shows cancer remaining in my left breast. Nothing appears in my right breast. But, with BRCA2+ there is a 60-80% (depending on where you get information) I would eventually get breast cancer in the right breast as well. He said he had talked to the tumor board about my "elusive cancer" and they all agreed a double mastectomy was the appropriate action.
I'd hoped to have it on Monday at the Huntsman Cancer Institute but their surgery scheduled was already booked up. So, Dr. N. will perform the surgery on Tuesday at the University of Utah, which is right next door. I can be admitted to the U of Utah after the surgery or be admitted to the Huntsman. Initially, I said I was fine staying at the U of Utah, but I really would prefer to be at the Huntsman so I'm going to email the scheduler this evening to see if that can be arranged.
I have to call the scheduling folks to find out what time my surgery will be on Tuesday. Because I am extremely Type-A I would prefer to know the time now, but it is one of the things I'm learning through this experience, sometimes I have to chill out and let go and try to stop controlling everything.
I am still extremely tired despite the fact my last chemo was just a little over a month ago. I thought I would rebound from it quicker than I have - but I haven't been through this before so I don't have anything to measure it against. I have been able to talk to a few cancer survivors of late that said it can take a long time. One said a year and a half. I hope that is not the case for me. I'm so ready to start running again. I know it will be a while, but I'm itching to do it!
It's hard to put into words how I feel about the sugery. I'd hoped to have immediate reconstruction and that is not going to happen because I must get started with radiation a month after my surgery - pronto.
I wonder what it will feel like to wake up without breasts. I've had them since I was about 15. They nourished my children. I'm guessing the pain from the surgery will more troublesome than the loss of the breasts in the beginning. Over the weekend, I watched a few actual mastectomies on YouTube. Yes, I did. I won't be able to lift my arms for quite some time. I'll have a few drains for a week or two, I think. One video logger (vlog) said to make sure women have hoodies with a zipper to wear once discharged from the hospital. I only have a few. It's winter - what else will I wear. A t-shirt and tank top require you to lift your arms. Should be interesting.
I've made the dogs transition to sleeping in their beds on the floor over the past two weeks because I don't want them to jump on me after the surgery. The cats will be another matter. I'm guessing I'll have to lock myself in our bedroom. As I've mentioned, I really think two of them know I have cancer (they ALWAYS lay with me touching my left side while we snuggle). I just get chills when I think about them bumping me when I'm recovering.
I'm ready for the surgery. I think it will prove to be a bit of an emotional roller coaster and painful. I draw strength from knowing other women have gone through it and it is ultimately greatly decrease my chances of getting breast cancer again. Getting a double mastectomy does not ensure 100% it won't come back. It makes it about a 90% chance it won't come back. I prefer those odds. I'll increase the odds in my favor by getting a hysterectomy when I complete radiation. After that, I will see my team at the Cancer Center every 2-3 months for the first 2-3 years because triple-negative breast cancer has such a high rate of recurrence.
Again, it's a marathon, not a sprint. I think right now, I might be in the marathon medical tent to get some extra medical care to ensure I can finish the race.
I'll be "in the tent" at the hospital in Utah for 1-3 days and then off work for 2-3 weeks. I was told it will really take 2 months to heal and a woman who has a great blog about her experience (and chose to never have reconstruction said it took one entire year for the scarring to settle down and smooth out, wow!). It boggles my mind. And, my mind is reeling like a hamster going around and around in his wheel. It makes it slightly more stressful this is happening days before Christmas as well.
Okay, I need to head to bed. I've been trying to get my body really rested and prepared for the surgery. Again, hard to do right before Christmas.
Say a few prayers or send vibes out into the universe for a successful surgery on Tuesday. I'll blog again when I'm feeling up to it! Thanks, everyone!
Last Thursday we drove back to Utah to the Huntsman Cancer Institute and I had some tests. I had a breast MRI. I was then instructed to call the next morning at 9 a.m. because Dr. N would have been done presenting my case to the tumor board.
Not wanting to appear overly anxious I waited until about 9:08 a.m. to call. The nurse said Dr. N wanted to speak to me himself. He told me, as I'd already been informed, the biopsies were benign. However, the breast MRI shows cancer remaining in my left breast. Nothing appears in my right breast. But, with BRCA2+ there is a 60-80% (depending on where you get information) I would eventually get breast cancer in the right breast as well. He said he had talked to the tumor board about my "elusive cancer" and they all agreed a double mastectomy was the appropriate action.
I'd hoped to have it on Monday at the Huntsman Cancer Institute but their surgery scheduled was already booked up. So, Dr. N. will perform the surgery on Tuesday at the University of Utah, which is right next door. I can be admitted to the U of Utah after the surgery or be admitted to the Huntsman. Initially, I said I was fine staying at the U of Utah, but I really would prefer to be at the Huntsman so I'm going to email the scheduler this evening to see if that can be arranged.
I have to call the scheduling folks to find out what time my surgery will be on Tuesday. Because I am extremely Type-A I would prefer to know the time now, but it is one of the things I'm learning through this experience, sometimes I have to chill out and let go and try to stop controlling everything.
I am still extremely tired despite the fact my last chemo was just a little over a month ago. I thought I would rebound from it quicker than I have - but I haven't been through this before so I don't have anything to measure it against. I have been able to talk to a few cancer survivors of late that said it can take a long time. One said a year and a half. I hope that is not the case for me. I'm so ready to start running again. I know it will be a while, but I'm itching to do it!
It's hard to put into words how I feel about the sugery. I'd hoped to have immediate reconstruction and that is not going to happen because I must get started with radiation a month after my surgery - pronto.
I wonder what it will feel like to wake up without breasts. I've had them since I was about 15. They nourished my children. I'm guessing the pain from the surgery will more troublesome than the loss of the breasts in the beginning. Over the weekend, I watched a few actual mastectomies on YouTube. Yes, I did. I won't be able to lift my arms for quite some time. I'll have a few drains for a week or two, I think. One video logger (vlog) said to make sure women have hoodies with a zipper to wear once discharged from the hospital. I only have a few. It's winter - what else will I wear. A t-shirt and tank top require you to lift your arms. Should be interesting.
I've made the dogs transition to sleeping in their beds on the floor over the past two weeks because I don't want them to jump on me after the surgery. The cats will be another matter. I'm guessing I'll have to lock myself in our bedroom. As I've mentioned, I really think two of them know I have cancer (they ALWAYS lay with me touching my left side while we snuggle). I just get chills when I think about them bumping me when I'm recovering.
I'm ready for the surgery. I think it will prove to be a bit of an emotional roller coaster and painful. I draw strength from knowing other women have gone through it and it is ultimately greatly decrease my chances of getting breast cancer again. Getting a double mastectomy does not ensure 100% it won't come back. It makes it about a 90% chance it won't come back. I prefer those odds. I'll increase the odds in my favor by getting a hysterectomy when I complete radiation. After that, I will see my team at the Cancer Center every 2-3 months for the first 2-3 years because triple-negative breast cancer has such a high rate of recurrence.
Again, it's a marathon, not a sprint. I think right now, I might be in the marathon medical tent to get some extra medical care to ensure I can finish the race.
I'll be "in the tent" at the hospital in Utah for 1-3 days and then off work for 2-3 weeks. I was told it will really take 2 months to heal and a woman who has a great blog about her experience (and chose to never have reconstruction said it took one entire year for the scarring to settle down and smooth out, wow!). It boggles my mind. And, my mind is reeling like a hamster going around and around in his wheel. It makes it slightly more stressful this is happening days before Christmas as well.
Okay, I need to head to bed. I've been trying to get my body really rested and prepared for the surgery. Again, hard to do right before Christmas.
Say a few prayers or send vibes out into the universe for a successful surgery on Tuesday. I'll blog again when I'm feeling up to it! Thanks, everyone!
Sunday, December 11, 2011
Surgery Postponed for a Week
Hello family, friends, and followers!
Yes, I met with the surgeon at the Huntsman Cancer Institute on Thursday and he said the bottom line is that he wants to meet with the Huntsman Tumor Board this coming Thursday and talk with them about my complex case. I was quite upset with the news because I finally had accepted I was going to have the surgery and now it will be another week.
A few things did take place Wedesday/Thursday. I read through some paperwork the Cancer Center gave to me for the D.C. Trip in case I got sick and had to go to the hospital for some reason. My CT scan that was done at the beginning of November said there is a nodule in my lung. It said it may be a cyst....but I've heard that before and it was CANCER. I pointed it out to the Huntsman team I met with.
Secondly, the resident that performed a breast exam on me was concerned about a lump he found in my right breast and there was an indentation of my breast which is another warning sign of cancer. My initial cancer was in the left breast and 3 lymph nodes.
Then, Dr. N. felt the lumps in my axilla and said that he wanted an ultrasound and biopsies of them that day. He also wants me back down there next Wedneday for another MRI. He said radiologists have their own way of ordering MRI's and reading them. I'm guessing they'll review them with the tumor board in Thursday morning.
There were two radiologists that performed the ultrasound and the lead radiologist thinks the lumps are both cysts. Again, with the damn cyst diagnosis, when I almost accepted that diagnosis. If I hadn't, I would be looking at a stage III or IV cancer right nowl It's alreqdy highly aggrssive enough as it is. So, I insisted on the biopsies. Another radiologist performed three biopsies and he had an extremely difficult time getting into the lymph node/tumor/scar tissue because it was so hard. He said he was glad we were doing it and it was not a cyst or it would have popped easily with the biopsy needle and the clip which makes a poppong sound as it takes the tissue sample. I will be called on Monday or Tuesday with the biopsy results.
Then, we have to make another trip down there for the MRI on Wednesday. It's about a two and a half hour trip for those of you from other parts of the country, or the world. As long as we don't have snow on the roads it's a good drive. Snow is another matter altogether!
I did some Christmas shopping yesterday and almost dropped after the second store. Once home I was very out of breath and exhausted. At the Huntsmand my blood pressure was 149/98, which is very high for me but I attributed it to nerves. Today I went to a church service and was exhausted by the time I was dressed and ready to go. I again and extremely fatigued and short of breath. So, now I'm in bed ready for a nap. I may call the cancer center and let them know I'm not bouncing back the way I thought I would. I'm just about a month out of my last chemo session and maybe I'm expecting too much too soon, or something else is going on. I just know I again, can barely stay awake or walk a flight of stairs, or shop!! And I love Christmas shopping so that was a big bummer!!!
Oh, I just remembered one more thing. Michael and I met with an OB/GYN to her opinion on just having my ovaries and Fallopian tubes removed versus a complete hysterectomy because I am BRCA2+ and she without a doubt I need a full hysterectomy. She is concerned about other peritoneal cancers such as liver, stomach, and gall bladder cancer, even though triple-negative breast cancer typically recurs in the lungs, liver, or brain first. THAT'S why I was so upset to see the finding that there is something in my lung. She thought it would be GREAT is if they could do the double mastectomy and the hysterectomy at the same time, and I've made several phone calls and that just want haappen at this point. Maybe that can be done at the same time as my breast reconstruction. Michael asked her again, why it's so imperative I have her double mastectomy before radiation and she said, "because we want you wife to be here in five years." That made my heart skip a beat and reminded me of how aggressive this cancer is.
Thanks to all of you for your support from near and afar. I can see statistics of visits to the site and I've been excited to see viewers have looked at the site from Canada, Russis, Germany, Indonesia, and many more countries.
While I said I was ready mentally for the surgery to happen tomorrow, I have to admit the surgery scares me....I won't say to death...but I'm extremely anxious to wake with no breasts and from the photos I've seen of other women, incisions are very long. So, the postponement give me a few more days to adjust to he thought of surgery...and get additional
Christmas shopping done.
I'll post again once I know what the biopsy results are and when surgery is scheduled.
Ciao!
P.S. I found a few typos and corrected them...the others I hope can be excused because of my fatigue. Thanks!
Yes, I met with the surgeon at the Huntsman Cancer Institute on Thursday and he said the bottom line is that he wants to meet with the Huntsman Tumor Board this coming Thursday and talk with them about my complex case. I was quite upset with the news because I finally had accepted I was going to have the surgery and now it will be another week.
A few things did take place Wedesday/Thursday. I read through some paperwork the Cancer Center gave to me for the D.C. Trip in case I got sick and had to go to the hospital for some reason. My CT scan that was done at the beginning of November said there is a nodule in my lung. It said it may be a cyst....but I've heard that before and it was CANCER. I pointed it out to the Huntsman team I met with.
Secondly, the resident that performed a breast exam on me was concerned about a lump he found in my right breast and there was an indentation of my breast which is another warning sign of cancer. My initial cancer was in the left breast and 3 lymph nodes.
Then, Dr. N. felt the lumps in my axilla and said that he wanted an ultrasound and biopsies of them that day. He also wants me back down there next Wedneday for another MRI. He said radiologists have their own way of ordering MRI's and reading them. I'm guessing they'll review them with the tumor board in Thursday morning.
There were two radiologists that performed the ultrasound and the lead radiologist thinks the lumps are both cysts. Again, with the damn cyst diagnosis, when I almost accepted that diagnosis. If I hadn't, I would be looking at a stage III or IV cancer right nowl It's alreqdy highly aggrssive enough as it is. So, I insisted on the biopsies. Another radiologist performed three biopsies and he had an extremely difficult time getting into the lymph node/tumor/scar tissue because it was so hard. He said he was glad we were doing it and it was not a cyst or it would have popped easily with the biopsy needle and the clip which makes a poppong sound as it takes the tissue sample. I will be called on Monday or Tuesday with the biopsy results.
Then, we have to make another trip down there for the MRI on Wednesday. It's about a two and a half hour trip for those of you from other parts of the country, or the world. As long as we don't have snow on the roads it's a good drive. Snow is another matter altogether!
I did some Christmas shopping yesterday and almost dropped after the second store. Once home I was very out of breath and exhausted. At the Huntsmand my blood pressure was 149/98, which is very high for me but I attributed it to nerves. Today I went to a church service and was exhausted by the time I was dressed and ready to go. I again and extremely fatigued and short of breath. So, now I'm in bed ready for a nap. I may call the cancer center and let them know I'm not bouncing back the way I thought I would. I'm just about a month out of my last chemo session and maybe I'm expecting too much too soon, or something else is going on. I just know I again, can barely stay awake or walk a flight of stairs, or shop!! And I love Christmas shopping so that was a big bummer!!!
Oh, I just remembered one more thing. Michael and I met with an OB/GYN to her opinion on just having my ovaries and Fallopian tubes removed versus a complete hysterectomy because I am BRCA2+ and she without a doubt I need a full hysterectomy. She is concerned about other peritoneal cancers such as liver, stomach, and gall bladder cancer, even though triple-negative breast cancer typically recurs in the lungs, liver, or brain first. THAT'S why I was so upset to see the finding that there is something in my lung. She thought it would be GREAT is if they could do the double mastectomy and the hysterectomy at the same time, and I've made several phone calls and that just want haappen at this point. Maybe that can be done at the same time as my breast reconstruction. Michael asked her again, why it's so imperative I have her double mastectomy before radiation and she said, "because we want you wife to be here in five years." That made my heart skip a beat and reminded me of how aggressive this cancer is.
Thanks to all of you for your support from near and afar. I can see statistics of visits to the site and I've been excited to see viewers have looked at the site from Canada, Russis, Germany, Indonesia, and many more countries.
While I said I was ready mentally for the surgery to happen tomorrow, I have to admit the surgery scares me....I won't say to death...but I'm extremely anxious to wake with no breasts and from the photos I've seen of other women, incisions are very long. So, the postponement give me a few more days to adjust to he thought of surgery...and get additional
Christmas shopping done.
I'll post again once I know what the biopsy results are and when surgery is scheduled.
Ciao!
P.S. I found a few typos and corrected them...the others I hope can be excused because of my fatigue. Thanks!
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