As we approach Christmas, it is too easy to get wrapped up in the busyness of this time of the year. Shopping, programs, travel, parties... the list goes on and on and easily can consume some of the joy and reflection which should be the main part of the Christmas season.
And sometimes we are put in a position where the realization of the grace that is gifted to us can do nothing but lovingly embrace us and bring us to our knees. Through circumstances not really related to breast cancer directly, but definitely related to the journey of life that brings us from fear to faith, I have been humbled beyond measure and made aware of the immeasurable blessing that is the grace that is gifted to us.
The beginning of the situation I am now in began long ago, way before breast cancer, but was orchestrated in such a way that it saved my life now. The measurable beginning was a little over a year and a half ago. Excruciating pain began invading my life randomly here and there, sending me to the emergency room a couple of times and to the regular doctor many times. Elevated white counts and abdominal pain usually led to scans and ultrasounds, the concern being that I had appendicitis. However, testing repeatedly excluded appendicitis and pointed to gynecological issues. Ovarian cysts were randomly forming and rupturing causing appendicitis like symptoms and we also discovered I had a very large uterine fibroid. I was assured everything appeared benign, and though painful, would not harm me.
I dealt with this pain off and on until this past August. I awoke in the middle of the night to feed our foster baby and was in such excruciating pain that I could not stand without nearly passing out. As I lay in bed writhing in pain, I asked my husband to fetch me a strong narcotic left over from my last surgery. Instead he wanted to run me straight to the ER. I talked him into seeing if I'd feel better after the four hours it takes for the pain med to begin to wear off. Four hours later I was once again in excruciating pain and I let my husband drive me to the ER while I was nearly passing out in the seat next to him. After a day of blood work and an emergency scan, I was told there was really nothing new on my scans that would explain my pain, and that it was probably my existing uterine fibroid causing the pain.
This did not sit well with me, so I pursued a referral to a gynecologist. More testing showed a marginally elevated CA125 blood count which can be an indication of gynecological cancer, but more than likely was elevated from my large fibroid. I was referred to a surgical gynecologist and the first time I met him he said I not only needed an endometrial biopsy but he also recommended a full hysterectomy. He believed that not only should I not be living in this much pain, but he felt considering my history with having had breast cancer twice, the elevated risk of gynecological cancers was a risk that was just not worth taking. This was hard advice to hear coming from a doctor I'd never met before.
I went ahead with the biopsy, which came back normal. After much thinking, I knew this doctor was right. Having a hysterectomy would be uncomfortable and could lead to some difficult side effects, but it would not kill me. However, not having a hysterectomy could potentially allow cancers to grow which could indeed kill me. I decided I needed to go ahead with surgery. I had that surgery Friday, December 4th.
The plan was to have a laparoscopic procedure that would take about two and a half hours. The surgeon started out laparoscopically and quickly realized that it would not be possible to complete surgery laparoscopically. Before surgery, it was believed my uterus was enlarged to a 12 week pregnancy size. While doing surgery, the surgeon realized that the uterus was actually enlarged to a 20 week pregnancy size and on top of that I had severe endometriosis which had fused most of my organs and nerves in my pelvis together. The two and half hour surgery turned into a 5 hour surgery and the laparoscopic surgery was switched out to open abdominal surgery.
The surgeon believes I have been dealing with endometriosis since my teenage years and it had just now hit such a critical point that it, and not my fibroids or ovarian cysts had been causing my excruciating pain. It had taken over 20 years for the endometriosis to hit a critical point. I did not realize the significance of this timing until a couple of days ago.
I went in for my surgical follow up appointment, and my doctor, knowing how much I'd wrestled with the decision to proceed with surgery, told me that I would be very happy I'd had surgery once I'd heard the pathology report from surgery. It turns out that the fibroid which multiple medical professionals had assured me was benign had some concerning things going on with it. While not cancerous, the pathologist found some abnormal cells, and my surgeon believes that the fibroid was on its way to becoming a uterine sarcoma. He told me a uterine sarcoma is a cancer which is not cured. It is a death sentence.
Humbled, blessed beyond measure, this gift of grace has moved me to the place I needed to be right now... reflective of the ultimate gift of God's grace. God's grace spared me, my mortal and very flawed body, allowing me to have more time on earth with my family. This gift seems enormous, almost beyond measure. But how much more should we be amazed, humbled and blessed by the ultimate gift of grace? The grace of God presenting himself as a sacrifice so our relationship with Him can be eternally and perfectly restored. We messed the relationship up, but He has given it all to restore the thing that He knows will truly bless us beyond anything we can imagine through all of eternity.
May this season remind us all of the ultimate gift of grace! A babe in the manger... God himself... on a mission to restore our relationship, forgive us unconditionally and love us beyond measure.
Thursday, December 17, 2015
Sunday, May 3, 2015
Moving On... A Day At A Time
After surgery and before heading down to Mayo for our last trip, I was really struggling with being OK with the high possibility that no further treatment would be needed. Logically, I knew this would more than likely be the recommendation I would get from the Mayo oncologist and I knew this was probably the right choice to make. However, emotionally I was really struggling. Five years ago, I was treated with surgery, 15 months of intravenous treatment (chemo) and five to ten years on a pill. Now, after getting cancer again less than four years from stopping intravenous treatments, they want to cut the cancer out and then send me on my way? I was really struggling with how I was going to emotionally process that. My prayer request going down to visit with Mayo this past trip was that I would be OK with what they recommended.
Our oncologist down at Mayo was very sympathetic to any fears and concerns I brought into the room with me. He was honest and sounded like he had never encountered a recurrence case exactly like mine. He informed us that he would be presenting my case in front of a national board of oncologists this next week to see if any other oncologists from other parts of the country had insight to share on my particular case. That being said, he believes that due to the fact all the cancer they removed was not invasive and they had excellent surgical margins, treatment is indeed done. He assured me that patients who are treated with surgery for Paget's disease have a very good prognosis. He puts my ten year survival odds at 93-97%. His honesty and knowledge helped to give me the peace I knew I needed to say I am done with treatment.
I'm not saying my peace comes from the reassuring words of a doctor, but I believe God gave me a doctor who would meet me where I was and could get me where I needed to be to continue walking forward in faith and not fear. I wish I could say my faith meter is 100% full, but it is not. Fear is still there and I think that is OK as long as I allow that "fear" to give me a healthy life view.
When I developed bilateral breast cancer at the age of 33, the odds of that having happened to me were less than one-half of a percent.
When I developed Paget's disease as a recurrence, the odds of that having happened were less than 1%.
Now, I have a 3-7% chance of not being around in 10 years.
How do I process that? With a lot of faith and a healthy dose of reality...
What does that reality look like? Currently I am relieved, because had my recurrence been invasive I would have had about a 50% chance of ten year survival. Along with relief though, I am feeling blessed. Blessed I have today, right now, to live life here on earth with my family. I have faith that I will be fully healed someday. At that time, my scars will be gone and I will never have to worry about cancer again. I will be made new and perfect. I do not know when that will happen, but I know it will. Until that happens, may I always remember to love God and love people today... now, because tomorrow is not a promise, it is an assumption of my selfish humanity. That is the life view that I need to keep so I can continue living life to its fullest, every. single. day.
Tuesday, April 14, 2015
Post Surgery Update
I ended up having my surgery last Friday, April 10th. My surgeon called me yesterday with the final pathology report from surgery. Remember when I said the type of breast cancer I had was called Paget's disease and that it usually shows up with an underlying breast cancer? But remember how I was comforted by the fact that I'd just had a clear breast MRI and most of my breast tissue was already removed, so the odds of me having an underlying breast cancer was unlikely? Well, once again the unlikely happened to me. My surgeon informed me that not only did I have Paget's disease, but I also had an underlying area which measured just under a centimeter of ductal carcinoma in situ (DCIS) underneath the skin that had Paget's disease. Both Paget's disease and DCIS are non-invasive cancers, which means they are contained in the area they formed. This surprise diagnosis leads me to the explanation of how I'm doing.
Today, I am feeling tired, sore, sad and extremely blessed. I don't know if that makes sense to anyone but me, but I will try and explain. I am tired because anesthesia is really hard on my body. It drains me of energy. I haven't been taking prescription pain medication since Friday, but yet I feel a lot of the time like I'm in a mental fog.
As far as sore, that is probably the easiest thing to deal with. I have been maintaining my pain relief with just Tylenol, and my last dose of that was Sunday night. I feel just as good now having not taken Tylenol as I did while on Tylenol.
Sad is a little harder to deal with. I choose to mutilate my perfectly good reconstruction to get rid of this cancer. I choose to mutilate not one side, but both sides of my reconstruction because I knew if the extra tissue on one side had betrayed me, I'd never trust the other side. So I'm sad because while before I could sometimes look at myself and sort of forget the horror that was breast cancer, that is not an option right now. I am constantly reminded of the pain and fear that breast cancer has become for me. I realize time will fade the scars, sadness and fear, but it will not take them away. As long as the reminder of that sadness and fear leads me to remembering how blessed I have been through this ordeal, it will be alright. Through it all, God has been, is and will continue to be big enough for my sadness and fears.
Lastly and mostly, I feel extremely blessed. I had four years with excellent reconstruction that allowed me the freedom to forget sometimes that my body had been through horrific disfiguring surgery because of cancer. I am blessed because had not the Paget's disease presented itself so suddenly out of nowhere, how much longer would have I had before the underlying DCIS turned invasive? That Paget's skin presentation was the warning needed to address a cancer which was brewing underneath. Once again, I feel protected from a situation that could have progressed into a much less optimistic prognosis. So I am counting my blessings, and I'm still feeling incredibly blessed.
So what is the next step? Well, hopefully treatment is done. We go down to Mayo again the end of April to consult with a medical oncologist hopefully to confirm my surgeon's belief that since the cancer was non-invasive surgery was the only treatment needed. After that, I will consult with my local medical oncologist and make sure both oncology professionals agree. We will proceed from there.
Today, I am feeling tired, sore, sad and extremely blessed. I don't know if that makes sense to anyone but me, but I will try and explain. I am tired because anesthesia is really hard on my body. It drains me of energy. I haven't been taking prescription pain medication since Friday, but yet I feel a lot of the time like I'm in a mental fog.
As far as sore, that is probably the easiest thing to deal with. I have been maintaining my pain relief with just Tylenol, and my last dose of that was Sunday night. I feel just as good now having not taken Tylenol as I did while on Tylenol.
Sad is a little harder to deal with. I choose to mutilate my perfectly good reconstruction to get rid of this cancer. I choose to mutilate not one side, but both sides of my reconstruction because I knew if the extra tissue on one side had betrayed me, I'd never trust the other side. So I'm sad because while before I could sometimes look at myself and sort of forget the horror that was breast cancer, that is not an option right now. I am constantly reminded of the pain and fear that breast cancer has become for me. I realize time will fade the scars, sadness and fear, but it will not take them away. As long as the reminder of that sadness and fear leads me to remembering how blessed I have been through this ordeal, it will be alright. Through it all, God has been, is and will continue to be big enough for my sadness and fears.
Lastly and mostly, I feel extremely blessed. I had four years with excellent reconstruction that allowed me the freedom to forget sometimes that my body had been through horrific disfiguring surgery because of cancer. I am blessed because had not the Paget's disease presented itself so suddenly out of nowhere, how much longer would have I had before the underlying DCIS turned invasive? That Paget's skin presentation was the warning needed to address a cancer which was brewing underneath. Once again, I feel protected from a situation that could have progressed into a much less optimistic prognosis. So I am counting my blessings, and I'm still feeling incredibly blessed.
So what is the next step? Well, hopefully treatment is done. We go down to Mayo again the end of April to consult with a medical oncologist hopefully to confirm my surgeon's belief that since the cancer was non-invasive surgery was the only treatment needed. After that, I will consult with my local medical oncologist and make sure both oncology professionals agree. We will proceed from there.
Thursday, March 26, 2015
Mayo's Take On Things
Our Mayo trip was not very eventful, which is a good thing. I have always been incredibly impressed with how efficiently the medical process runs at the Mayo facility. Our first appointment was at 7:00 a.m. and by 2:00 we had completed two consults, labs with the results, we were set up for our next two appointments in April and surgery was penciled in. We also had time to enjoy a delicious sit down brunch in that time frame as well.
One of the new things I learned while down at Mayo was the cancer I am dealing with is hormone negative and Her2 positive. This makes sense, because I am currently taking Tamoxifen which should prevent any hormone positive cancers from growing. I stopped my Her2 targeted treatment in April of 2011 because standard protocol for treatment for that drug was one year.
No official decisions have been made on post surgery treatment. We will wait until final pathology is completed after surgery and then I will be referred to a medical oncologist to see what, if any, post surgery treatment is needed. They did make me aware that chemotherapy is still on the table as a possible treatment option. However, one of the toughest drugs I completed last time, Adriamycin, will not be an option since I received my maximum life time dose last time. I was relieved to hear that. They were also reassuring in the fact that while one of the toughest drugs to tolerate (Adriamycin) is out of the question for me this time, there are a lot of other options out there to effectively treat breast cancer in my situation.
Mayo did not even mention the possibility of radiation to me. I would be OK with keeping radiation as one of the breast cancer treatments I have not experienced. However, I am still keeping it in the back of my mind as a possibility, just because I know from experience that surgery can lead to unexpected findings.
The pathologist at Mayo retested my biopsy sample and confirmed that we are indeed dealing with a Paget's disease breast cancer. I was led to believe by the professionals I saw at Mayo that, while any cancer recurrence is definitely concerning, Paget's disease is one of the most treatable breast cancer recurrences to deal with.
Tentatively, surgery is penciled in for sometime during the week after Easter. We will know more by next week. I feel so much better just having a rough idea as to when surgery will take place.
One of the new things I learned while down at Mayo was the cancer I am dealing with is hormone negative and Her2 positive. This makes sense, because I am currently taking Tamoxifen which should prevent any hormone positive cancers from growing. I stopped my Her2 targeted treatment in April of 2011 because standard protocol for treatment for that drug was one year.
No official decisions have been made on post surgery treatment. We will wait until final pathology is completed after surgery and then I will be referred to a medical oncologist to see what, if any, post surgery treatment is needed. They did make me aware that chemotherapy is still on the table as a possible treatment option. However, one of the toughest drugs I completed last time, Adriamycin, will not be an option since I received my maximum life time dose last time. I was relieved to hear that. They were also reassuring in the fact that while one of the toughest drugs to tolerate (Adriamycin) is out of the question for me this time, there are a lot of other options out there to effectively treat breast cancer in my situation.
Mayo did not even mention the possibility of radiation to me. I would be OK with keeping radiation as one of the breast cancer treatments I have not experienced. However, I am still keeping it in the back of my mind as a possibility, just because I know from experience that surgery can lead to unexpected findings.
The pathologist at Mayo retested my biopsy sample and confirmed that we are indeed dealing with a Paget's disease breast cancer. I was led to believe by the professionals I saw at Mayo that, while any cancer recurrence is definitely concerning, Paget's disease is one of the most treatable breast cancer recurrences to deal with.
Tentatively, surgery is penciled in for sometime during the week after Easter. We will know more by next week. I feel so much better just having a rough idea as to when surgery will take place.
Thursday, March 19, 2015
Details
Now that we've had some time to process what is going on, I'd like to give an update which is more specific as to what we are dealing with and how we are going to proceed.
I was diagnosed with a very rare breast cancer called Paget's disease. Basically, when I had my mastectomies down at Mayo they figured I was a good candidate for mastectomies which leave more of the breast tissue intact. This made reconstructive surgery more appealing to me, and more than likely the emotional healing a little easier as well. However, I was warned this procedure would increase my chance of a local recurrence, be it ever so slight. I took the risk, and that is probably why we are where we are today.
After researching Paget's disease, I learned that it makes up less than 5% of all breast cancer cases and has around a 1% chance of occurring after the type of surgery I had. Most of the time Paget's presents with an underlying breast cancer which could be invasive, but considering most of my breast tissue has been removed and the fact that I had a clear breast MRI the end of February, that shouldn't be the case for me. My biopsy only showed non-invasive cancer, but the surgeon did say there is a small chance invasive cancer could be found in the additional tissue removed during surgery.
We were very pleased with our surgeon who did the biopsy in Fargo. He possessed excellent bedside manner, was very knowledgeable and he took the time to request my surgery notes from Mayo. Treatment in Fargo was appealing until I started researching and discovered exactly how rare Paget's disease is, and how the prognosis is decreased in younger women and women with Her2+ cancer. I have one shot at this, and I'm making it the best shot I have. I have decided to go back down to Mayo Clinic for treatment in hopes they will have had more experience with the scenario I'm dealing with and be able to advise the most forward treatment available.
So once again, we will be traveling to Mayo Clinic to see what they advise for a treatment plan. We leave Monday and I don't know when we will be back.
I have no regrets about the choices I made for treatment and reconstruction five years ago. That is the path I needed to take to process what had happened to me and now I'm moving on. Is the experience I'm having now hard? Yes. However, emotionally I believe I'm in a better place today than I was five years ago. Still feeling blessed....
I was diagnosed with a very rare breast cancer called Paget's disease. Basically, when I had my mastectomies down at Mayo they figured I was a good candidate for mastectomies which leave more of the breast tissue intact. This made reconstructive surgery more appealing to me, and more than likely the emotional healing a little easier as well. However, I was warned this procedure would increase my chance of a local recurrence, be it ever so slight. I took the risk, and that is probably why we are where we are today.
After researching Paget's disease, I learned that it makes up less than 5% of all breast cancer cases and has around a 1% chance of occurring after the type of surgery I had. Most of the time Paget's presents with an underlying breast cancer which could be invasive, but considering most of my breast tissue has been removed and the fact that I had a clear breast MRI the end of February, that shouldn't be the case for me. My biopsy only showed non-invasive cancer, but the surgeon did say there is a small chance invasive cancer could be found in the additional tissue removed during surgery.
We were very pleased with our surgeon who did the biopsy in Fargo. He possessed excellent bedside manner, was very knowledgeable and he took the time to request my surgery notes from Mayo. Treatment in Fargo was appealing until I started researching and discovered exactly how rare Paget's disease is, and how the prognosis is decreased in younger women and women with Her2+ cancer. I have one shot at this, and I'm making it the best shot I have. I have decided to go back down to Mayo Clinic for treatment in hopes they will have had more experience with the scenario I'm dealing with and be able to advise the most forward treatment available.
So once again, we will be traveling to Mayo Clinic to see what they advise for a treatment plan. We leave Monday and I don't know when we will be back.
I have no regrets about the choices I made for treatment and reconstruction five years ago. That is the path I needed to take to process what had happened to me and now I'm moving on. Is the experience I'm having now hard? Yes. However, emotionally I believe I'm in a better place today than I was five years ago. Still feeling blessed....
Friday, March 13, 2015
Just Be Held
We got our biopsy news yesterday. It was not what we had hoped. I do have cancer again. It is more than likely a recurrence of the cancer I had before. This scenario is extremely rare, but does happen. My surgeon did assure me this is a very treatable recurrence. Treatment should just be surgery and if there are any surprises during surgery, radiation may be a treatment option as well.
A friend shared the song I linked here with me. It has been a blessing to me over the past couple of days. I hope it blesses you as well.
Could you please pray for us today? The night was long, as sleep eluded us, and we are tackling a full day of school and tending a little one with a bad case of the stomach flu.
Wednesday, March 11, 2015
Cloudy With A 100% Chance Of Praise
When the storm clouds accumulate suddenly... when you don't have a clear view of the horizon... when the thunder rumbles the depths of your soul... when the warning sirens begin to voice their concern, one should take shelter. Taking shelter is not simply finding any structure and trusting in it. Taking shelter requires analysis. One must seek a place free from flying debris, windows and unsafe structure. Your life depends on making the best choice possible.
Psalm 121:1-2
"I lift up my eyes to the hills-- where does my help come from? My help comes from the LORD, the Maker of heaven and earth."
My help and my shelter come from the Maker of heaven and earth. How amazing is it that the Maker of the wonderment which surrounds us loves us so intimately that He is there to weather every storm which comes our way with each and every one of us? Please take the time to read the rest of Psalm 121. It is such a comforting Psalm.
My storm is forming on the horizon. I don't have a clear view. The sirens are begin to sound. I am seeking my shelter in the Maker. Maybe this storm will pass on either side of me, and the clouds will quickly dissipate and the rainbow will appear. I would love to praise the Maker in the beams of sunshine. Or maybe this will be a very cloudy and dreary season, during which the Maker will carry me and surround me with His provision and peace and I will praise Him in the storm. Either way, my help comes from the Lord!
My apologies to those friends and family whom are so near and dear to us. I wish I had the emotional strength to visit with each and every one of you and talk this through, but the reality is I do not... not today. When I see you or talk to you, please don't be afraid to bring this up. I'm letting you all know at the same time, in this way, because I don't know how to initiate the following conversation.
You: "Hey! How's it going?"
Me: "Good! Oh, wait. I just lied. Please forgive me. You know that cancer I had five years ago? Well, the doctors think there is a small chance it may be rearing its ugly head again. I have an area of skin which has thickened, has bleed and has an odd appearance. My oncologist advised we figure out what is going on. Yesterday, I had an initial consult with a surgeon who says the skin issue could be a dermatitis, or it could be a cancer recurrence. Both scenarios present exactly the same way. The surgeon did an immediate biopsy. I should know by Friday if it is cancer or not."
Yesterday was the fifth biopsy I've ever had. Three out of my four previous biopsies have come back as cancer. I've decided biopsies give me anxiety. Please pray for peace for Jay, our kids and myself. I will let you know the results when we get them. Thank you!
Psalm 121:1-2
"I lift up my eyes to the hills-- where does my help come from? My help comes from the LORD, the Maker of heaven and earth."
My help and my shelter come from the Maker of heaven and earth. How amazing is it that the Maker of the wonderment which surrounds us loves us so intimately that He is there to weather every storm which comes our way with each and every one of us? Please take the time to read the rest of Psalm 121. It is such a comforting Psalm.
My storm is forming on the horizon. I don't have a clear view. The sirens are begin to sound. I am seeking my shelter in the Maker. Maybe this storm will pass on either side of me, and the clouds will quickly dissipate and the rainbow will appear. I would love to praise the Maker in the beams of sunshine. Or maybe this will be a very cloudy and dreary season, during which the Maker will carry me and surround me with His provision and peace and I will praise Him in the storm. Either way, my help comes from the Lord!
My apologies to those friends and family whom are so near and dear to us. I wish I had the emotional strength to visit with each and every one of you and talk this through, but the reality is I do not... not today. When I see you or talk to you, please don't be afraid to bring this up. I'm letting you all know at the same time, in this way, because I don't know how to initiate the following conversation.
You: "Hey! How's it going?"
Me: "Good! Oh, wait. I just lied. Please forgive me. You know that cancer I had five years ago? Well, the doctors think there is a small chance it may be rearing its ugly head again. I have an area of skin which has thickened, has bleed and has an odd appearance. My oncologist advised we figure out what is going on. Yesterday, I had an initial consult with a surgeon who says the skin issue could be a dermatitis, or it could be a cancer recurrence. Both scenarios present exactly the same way. The surgeon did an immediate biopsy. I should know by Friday if it is cancer or not."
Yesterday was the fifth biopsy I've ever had. Three out of my four previous biopsies have come back as cancer. I've decided biopsies give me anxiety. Please pray for peace for Jay, our kids and myself. I will let you know the results when we get them. Thank you!
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