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!
Showing posts with label bilateral mastectomy. Show all posts
Showing posts with label bilateral mastectomy. Show all posts
Sunday, December 18, 2011
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!
Wednesday, November 16, 2011
Chemo Complete, but Life Turned Upside Down
Wow, what a day. Yes, I have completed by my eighth and final chemotherapy treatment!!!! I am so thrilled to have made it.
It was actually overshadowed by what happened prior to being hooked up for the infusions. The oncologist visited with Michael and I and explained he was very happy no cancer showed up in the chest CT or MRI. In his words, "that would have been very bad."
I then explained to him I'm still very concerned about the lumps in my axilla because there are very similar in feel to the first tumor/lymph node that was found to be metastatic carcinoma. He then said he is equally concerned. He was going to dismiss me! He wanted to bring in his partner, the radiation oncologist, to get his take on the situation, because that is the next phase.
He came in to visit with Michael and I and palates the two lymph nodes and said he is very concerned. He said this is an unusual presentation and he doesn't trust anything about this cancer. What he wants to see happen, and very quickly, is a referral to a surgeon in Salt Lake City for a consult. I gave him the name of my preference, given to me buy a survivor, and he actually did his residency with him... So possibly a good connection! He wants the lymph nodes removed and biopsies AND a double mastectomy. Both doctors want this to happen once I've had three weeks to recover from my Taxol treatment and the surgery to take place between December 5th and the 15th. They want it expedited because of the aggressiveness of this cancer. That is my preference too.
What it took me a long time to comprehend as I struggled to process this news is that they don't want me to have immediate breast reconstruction. There can often be complications, and
they want to be able to get radiation started one month after that surgery has been completed.
I was hoping instead of getting two new front teeth for Christmas, I would have two cancer free breasts! That is not to be the case. I must now shift my thought process to the reality that it will likely be difficult to be without breasts, and see the resulting scars from the surgery. I'm terrified of what it will look like and how it will challenge my femininity and psyche...but it has to be done to save my life, right? So I will take it in stride and I'm sure eventually accept those scars until reconstruction. It's not like I have a modeling gig on the catwalk anytime soon.
It's yet another prompting by the powers that be to teach me I can be Miss Organized Type A all i want, but circumstances change and I need to relax, take a breathe, and take the new plan in stride. There is a reason for everything and this reason is TO SAVE MY LIFE. I'll take that.
L
It was actually overshadowed by what happened prior to being hooked up for the infusions. The oncologist visited with Michael and I and explained he was very happy no cancer showed up in the chest CT or MRI. In his words, "that would have been very bad."
I then explained to him I'm still very concerned about the lumps in my axilla because there are very similar in feel to the first tumor/lymph node that was found to be metastatic carcinoma. He then said he is equally concerned. He was going to dismiss me! He wanted to bring in his partner, the radiation oncologist, to get his take on the situation, because that is the next phase.
He came in to visit with Michael and I and palates the two lymph nodes and said he is very concerned. He said this is an unusual presentation and he doesn't trust anything about this cancer. What he wants to see happen, and very quickly, is a referral to a surgeon in Salt Lake City for a consult. I gave him the name of my preference, given to me buy a survivor, and he actually did his residency with him... So possibly a good connection! He wants the lymph nodes removed and biopsies AND a double mastectomy. Both doctors want this to happen once I've had three weeks to recover from my Taxol treatment and the surgery to take place between December 5th and the 15th. They want it expedited because of the aggressiveness of this cancer. That is my preference too.
What it took me a long time to comprehend as I struggled to process this news is that they don't want me to have immediate breast reconstruction. There can often be complications, and
they want to be able to get radiation started one month after that surgery has been completed.
I was hoping instead of getting two new front teeth for Christmas, I would have two cancer free breasts! That is not to be the case. I must now shift my thought process to the reality that it will likely be difficult to be without breasts, and see the resulting scars from the surgery. I'm terrified of what it will look like and how it will challenge my femininity and psyche...but it has to be done to save my life, right? So I will take it in stride and I'm sure eventually accept those scars until reconstruction. It's not like I have a modeling gig on the catwalk anytime soon.
It's yet another prompting by the powers that be to teach me I can be Miss Organized Type A all i want, but circumstances change and I need to relax, take a breathe, and take the new plan in stride. There is a reason for everything and this reason is TO SAVE MY LIFE. I'll take that.
L
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