When we told our oldest, who is nine years old, about the operation I will be undergoing, she got big tears in her eyes and said,"How do big people get so brave? I'm scared to get a shot." I explained to her that I am scared, but choosing not to have the surgery was scarier then having the surgery. I don't feel very brave. Being brave is defined by operating with courage. Courage is the ability to face difficulty without fear. I am afraid.
I know fear is not a good thing. It makes us act and speak in ways that hurt. I have seen this in the past week. I am short with the kids and irritable and angry with my husband, and for no other explainable reason, other then I'm afraid.
As a Christian, I know my fear does not come from God, but what I haven't figured out is how to get rid of it. I've also decided I'm not afraid of cancer, I'm afraid of change. I am such a routine and goal driven person, that the idea of everything changing has driving fear into me. I'm going to feel different, look different and have to totally change the role I play as mother, wife and friend. I am scared this experience is going to change who I am.
I know I can't let fear stay, or it will change who I am. This is one of the parts of my experience where I do have a choice. I can choose to be afraid, and fall victim, not to cancer, but to fear. Or I can choose to hand my fear over to the only place it will be destroyed (the hands of God) and I know He can turn my fear into hope. But I have to make the choice to give up my fear. It is MY choice.
Tuesday, January 26, 2010
Tuesday, January 19, 2010
Meetings with Oncology
Today, our first appointment was with Oncology. The Oncologist just affirmed that the decision to have surgery first is the best one, in his opinion. He said that there are certain cases where pre-surgery chemotherapy is probably the best, but with our case, he feels surgery is best. Being that I have at least two and possibly three different types of cancer going on, the chemotherapy treatment would leave one type of cancer not being as targeted by the chemotherapy. If we wanted to pursue pre-surgery chemotherapy, he would pick the regime to treat the HER2+ cancer, being that it is the most aggressive type I have going on. But during the time frame (around 5 months) we would be doing pre-surgery chemotherapy, there is the risk the non HER2+ cancer could progress, compromising my prognosis. I am more comfortable taking the risk that possibly the lymph node biopsy was wrong, then I am waiting 5 months doing chemotherapy and hoping some of my cancer isn't spreading.
At this appointment, we also ran thru what the probable chemotherapy regime could be for me. It looks tough. It looks like I will probably be doing a couple different "chemotherapy" drugs (approx. 5 months), a year of a HER2 specific drug, plus up to five years of a hormone receptor drug. A lot of the side effects of these drugs are terrifying, but I know they have to be done. One day at a time...
Our second appointment was with radiation oncology. We went over some of the post surgery scenarios that may require me to also need radiation. With the information we have now, it looks fairly unlikely I will need radiation. I would be just fine with never having to visit the radiation oncology department again! :-)
We also met with a genetic counselor. Due to the fact I have bilateral breast cancer at such a "young" age, there is a greater then 10% chance that I may have one of the BRCA gene mutations. We feel it would be wise to test for this gene mutation to better know how to deal with my case, and to hopefully better inform our children and other first degree relatives of certain medical conditions to screen for. If I indeed have one of these gene mutations, there may be a significantly elevated risk of me also developing ovarian cancer, and we could start screening or take preventive measures now.
We are proceeding with our scheduled surgery date of January 29th.
At this appointment, we also ran thru what the probable chemotherapy regime could be for me. It looks tough. It looks like I will probably be doing a couple different "chemotherapy" drugs (approx. 5 months), a year of a HER2 specific drug, plus up to five years of a hormone receptor drug. A lot of the side effects of these drugs are terrifying, but I know they have to be done. One day at a time...
Our second appointment was with radiation oncology. We went over some of the post surgery scenarios that may require me to also need radiation. With the information we have now, it looks fairly unlikely I will need radiation. I would be just fine with never having to visit the radiation oncology department again! :-)
We also met with a genetic counselor. Due to the fact I have bilateral breast cancer at such a "young" age, there is a greater then 10% chance that I may have one of the BRCA gene mutations. We feel it would be wise to test for this gene mutation to better know how to deal with my case, and to hopefully better inform our children and other first degree relatives of certain medical conditions to screen for. If I indeed have one of these gene mutations, there may be a significantly elevated risk of me also developing ovarian cancer, and we could start screening or take preventive measures now.
We are proceeding with our scheduled surgery date of January 29th.
Friday, January 15, 2010
Back to Rochester
Well, my husband and I have talked about it, and I'm pretty sure we'll be heading down to Rochester sometime on Monday. We need to talk to an Oncologist to try and wrap our heads around our chemotherapy treatment options... the pros and cons of having it before or after surgery. So we are going to try and find places for the kids to stay while we are gone, as we are hoping this should be a short trip.
Decisions
Well, I've received two phone calls from Mayo today, and I'm expecting at least one more.
The first phone call was my Internal Medicine doctor informing us we have some decisions to make. When we left Rochester on Wednesday, nobody on my medical team really felt there was a real benefit in doing chemotherapy before surgery, so they sent us home with the understanding we would meet with oncology after surgery to set up treatment at that time. My doctor says that since we left Rochester, there has been some extensive discussion between all the members of my medical team and there is some concern that I should at least consider chemotherapy before surgery.
My general surgeon feels that even though the lymph node biopsies came back negative, there still is a chance that when we get in to do surgery, further (more in depth) testing may show cancer in the lymph nodes. If that should happen, then I would need radiation (and chemotherapy), which may compromise my reconstructive surgery. At that time all the lymph nodes in my arm would have to be removed, highly increasing the chance I could develop lymphedema, a very painful swelling of the arm, which could be permanent. He feels if we do chemotherapy before surgery, if there is any cancer hiding in the lymph nodes, chemotherapy should kill it, so that when we go into surgery, the chances of finding cancer in the lymph nodes is reduced even more, thus possibly improving my quality of life after surgery and giving my reconstructive surgery more of a chance to be a success. They are leaving the final decision up to us.
Should we decide that we may want to have pre-surgery chemotherapy, this would mean we would have to travel back to Rochester Monday for more appointments with oncology and radiation oncology to discuss our options, and set up a treatment plan, if that is what we decide. Should we decide to fore go pre-surgery chemotherapy, then it sounds like surgery is tentatively set up for the 29th of January.
As much as I want to get this cancer out of my body RIGHT NOW, I know it would be foolish to not be patient and take our time to consider all our options. My feelings want surgery today, if that were possible, but my logic tells me differently.
I will be calling my doctor back today when we make a decision.
The first phone call was my Internal Medicine doctor informing us we have some decisions to make. When we left Rochester on Wednesday, nobody on my medical team really felt there was a real benefit in doing chemotherapy before surgery, so they sent us home with the understanding we would meet with oncology after surgery to set up treatment at that time. My doctor says that since we left Rochester, there has been some extensive discussion between all the members of my medical team and there is some concern that I should at least consider chemotherapy before surgery.
My general surgeon feels that even though the lymph node biopsies came back negative, there still is a chance that when we get in to do surgery, further (more in depth) testing may show cancer in the lymph nodes. If that should happen, then I would need radiation (and chemotherapy), which may compromise my reconstructive surgery. At that time all the lymph nodes in my arm would have to be removed, highly increasing the chance I could develop lymphedema, a very painful swelling of the arm, which could be permanent. He feels if we do chemotherapy before surgery, if there is any cancer hiding in the lymph nodes, chemotherapy should kill it, so that when we go into surgery, the chances of finding cancer in the lymph nodes is reduced even more, thus possibly improving my quality of life after surgery and giving my reconstructive surgery more of a chance to be a success. They are leaving the final decision up to us.
Should we decide that we may want to have pre-surgery chemotherapy, this would mean we would have to travel back to Rochester Monday for more appointments with oncology and radiation oncology to discuss our options, and set up a treatment plan, if that is what we decide. Should we decide to fore go pre-surgery chemotherapy, then it sounds like surgery is tentatively set up for the 29th of January.
As much as I want to get this cancer out of my body RIGHT NOW, I know it would be foolish to not be patient and take our time to consider all our options. My feelings want surgery today, if that were possible, but my logic tells me differently.
I will be calling my doctor back today when we make a decision.
Thursday, January 14, 2010
Getting Some Kid Therapy!
As I write this, I am sitting in my kitchen, listening to my one year talk and play with her toys. It was a busy time this morning getting the kids all fed and the two older ones off to school, but I cherished it, and don't think I've stopped smiling in hours. I think I slept with a smile on my face. :-)
Yesterday morning I woke up very homesick. I looked at our appointment schedule and realized we had scattered appointments thru next Tuesday and then surgery would probably follow shortly thereafter. It would probably be a good three weeks or more before I could give my kids a hug. I longed to be home, just to do my everyday stuff... grocery shopping, laundry, cleaning and taking care of my babies. Tears filled my eyes and I just resolved myself to take it a day at a time and make the best of it.
We showed up for our first appointment, the lymph node biopsy, and our next appointment wasn't for several hours, so we decided to drive back to my brother's place, so my husband could get some work done. No sooner had we walked in the door, then Mayo called and one of my Friday appointments was moved to 11:30. Fifteen minutes later they called back, bumping the appointment to 10:15. So we headed in. No sooner had we found a parking spot in the parking ramp, when my phone rang and my lymph node biopsy came back negative, so as far as they can tell now, the cancer is contained in only one part of my body. This is awesome news! On this note, we went in and met with the plastic surgeon. After that appointment, we went to a restaurant for lunch and talked. I told my husband how I longed to go home. He told me not to get my hopes up, but I couldn't help it.
After lunch, we went to wait for our 2:00 appointment, and they ended up getting us in a whole hour early. This appointment was to educate my husband and I as to what to expect after surgery. It sounds like it will be quit the recovery process. I can't lift anything over 10 lbs for at least 2 weeks, with gradual increases over time. It will probably be a good month or more before I can lift either of my two youngest children. I won't be able to lift my arms over shoulder level for at least two weeks. It sounds like I should expect a fair amount of pain. The good thing is, it sounds like they will wait about a month or more before starting my treatment(s), so I can recover some.
After this appointment, our coordinating doctor came and talked to us. I told her my desire to go home and be with my children, and that I really didn't want to stick around for one Friday appointment and one Tuesday appointment. She sympathized and said she would work on getting surgery schedule and move those two appointments to when we come down for surgery, so I could go home. Yeah!
We immediately took off for my brother's house (where we were staying) and had our stuff packed up and were on the road again within 20 minutes.
The drive was going relatively smoothly (although we did hit rush hour in the cities), other then there was a fair amount of fog. Just north of Akeley, I saw a deer pop out of the ditch on my husband's side of the road. I said, "Deer", and my husband didn't react. I learned later he was looking in my ditch for the deer, and that apparently it is the deer spotter's responsibility to also yell out the location of the suicidal deer (oops :-) ). I then yelled "DEER" at which time my husband realized he was looking the wrong direction. By the time he saw the deer it was in the middle of the road heading for our lane a mere couple of feet in front of us. My husband accelerated (and I was thinking "WHAT THE HECK ARE YOU DOING!?!") and the deer ran into the driver's side front panel right in front of the driver's side door. The deer's head took off our side mirror and the deer rolled down the side of the car. After thinking about it, I realize why my husband hit the gas, instead of the brakes. If he'd hit the brakes, there was a very good chance that deer would have hit right in the middle of the front of the car, causing a lot more damage, possible rolling up over the hood, thru the windshield and into our laps. Thank goodness my husband thought extremely fast and God protected us in a situation that could have been much worse!
I started thinking about the damage to our car and what we were going to do about it and how much worse it could have been, when I realized that the car and I had something in common. Our car is now dented and marked all down one side. We're missing a mirror. It doesn't look great, but it doesn't look awful, either. But you know what? It's still the same car... it runs just as good as before we hit the deer and, thankfully, everything (and everyone) inside was safe. At the end of this cancer situation, I'm still the same Heather I was a year ago. I may have a few more scars and bruises, but at the end of it all, our prayer and desire is that I will be safe on the inside. And, I've also come to the realization, that although having breast cancer is bad, this situation could have been so much worse!
Bad things do happen in life... and it sucks! And we all do have moments where it is OK to ask God why he allowed bad things to happen. God is big enough for that. I don't believe He's insulted by our questions. Sometimes asking those questions leads us to the realization that in the situation where we "felt" abandoned by God, He really was way more involved in taking caring of us then we are aware of. Our God is big enough to prevent bad things from happening, but sometimes, I think it takes an even bigger God to carry us thru bad things to the other side. I'm thankful our God is that big!
Yesterday morning I woke up very homesick. I looked at our appointment schedule and realized we had scattered appointments thru next Tuesday and then surgery would probably follow shortly thereafter. It would probably be a good three weeks or more before I could give my kids a hug. I longed to be home, just to do my everyday stuff... grocery shopping, laundry, cleaning and taking care of my babies. Tears filled my eyes and I just resolved myself to take it a day at a time and make the best of it.
We showed up for our first appointment, the lymph node biopsy, and our next appointment wasn't for several hours, so we decided to drive back to my brother's place, so my husband could get some work done. No sooner had we walked in the door, then Mayo called and one of my Friday appointments was moved to 11:30. Fifteen minutes later they called back, bumping the appointment to 10:15. So we headed in. No sooner had we found a parking spot in the parking ramp, when my phone rang and my lymph node biopsy came back negative, so as far as they can tell now, the cancer is contained in only one part of my body. This is awesome news! On this note, we went in and met with the plastic surgeon. After that appointment, we went to a restaurant for lunch and talked. I told my husband how I longed to go home. He told me not to get my hopes up, but I couldn't help it.
After lunch, we went to wait for our 2:00 appointment, and they ended up getting us in a whole hour early. This appointment was to educate my husband and I as to what to expect after surgery. It sounds like it will be quit the recovery process. I can't lift anything over 10 lbs for at least 2 weeks, with gradual increases over time. It will probably be a good month or more before I can lift either of my two youngest children. I won't be able to lift my arms over shoulder level for at least two weeks. It sounds like I should expect a fair amount of pain. The good thing is, it sounds like they will wait about a month or more before starting my treatment(s), so I can recover some.
After this appointment, our coordinating doctor came and talked to us. I told her my desire to go home and be with my children, and that I really didn't want to stick around for one Friday appointment and one Tuesday appointment. She sympathized and said she would work on getting surgery schedule and move those two appointments to when we come down for surgery, so I could go home. Yeah!
We immediately took off for my brother's house (where we were staying) and had our stuff packed up and were on the road again within 20 minutes.
The drive was going relatively smoothly (although we did hit rush hour in the cities), other then there was a fair amount of fog. Just north of Akeley, I saw a deer pop out of the ditch on my husband's side of the road. I said, "Deer", and my husband didn't react. I learned later he was looking in my ditch for the deer, and that apparently it is the deer spotter's responsibility to also yell out the location of the suicidal deer (oops :-) ). I then yelled "DEER" at which time my husband realized he was looking the wrong direction. By the time he saw the deer it was in the middle of the road heading for our lane a mere couple of feet in front of us. My husband accelerated (and I was thinking "WHAT THE HECK ARE YOU DOING!?!") and the deer ran into the driver's side front panel right in front of the driver's side door. The deer's head took off our side mirror and the deer rolled down the side of the car. After thinking about it, I realize why my husband hit the gas, instead of the brakes. If he'd hit the brakes, there was a very good chance that deer would have hit right in the middle of the front of the car, causing a lot more damage, possible rolling up over the hood, thru the windshield and into our laps. Thank goodness my husband thought extremely fast and God protected us in a situation that could have been much worse!
I started thinking about the damage to our car and what we were going to do about it and how much worse it could have been, when I realized that the car and I had something in common. Our car is now dented and marked all down one side. We're missing a mirror. It doesn't look great, but it doesn't look awful, either. But you know what? It's still the same car... it runs just as good as before we hit the deer and, thankfully, everything (and everyone) inside was safe. At the end of this cancer situation, I'm still the same Heather I was a year ago. I may have a few more scars and bruises, but at the end of it all, our prayer and desire is that I will be safe on the inside. And, I've also come to the realization, that although having breast cancer is bad, this situation could have been so much worse!
Bad things do happen in life... and it sucks! And we all do have moments where it is OK to ask God why he allowed bad things to happen. God is big enough for that. I don't believe He's insulted by our questions. Sometimes asking those questions leads us to the realization that in the situation where we "felt" abandoned by God, He really was way more involved in taking caring of us then we are aware of. Our God is big enough to prevent bad things from happening, but sometimes, I think it takes an even bigger God to carry us thru bad things to the other side. I'm thankful our God is that big!
Tuesday, January 12, 2010
What We've Learned
I'm exhausted, but kind of need to process things, and feel this is a concrete way I can do that. So here are the highlights of our last two days at Mayo.
- We talked to a surgeon, and it "looks" like the soonest surgery would be is late next week, but more then likely the following week.
- All the preliminary testing indicates that the bones, lungs and liver appear to be cancer free.
- We had an ultrasound on the lymph nodes today, and unfortunately, they did find cause to do further testing. I will be have a lymph node biopsy early tomorrow morning.
- We got scheduled to see an oncologist Tuesday of next week (Jay's birthday).
I really, really, really miss my kids and the idea of staying here for as long as I think we are going to have to be down here without them is very hard. Sorry this is so short, but honestly, I have no more energy left today.
- We talked to a surgeon, and it "looks" like the soonest surgery would be is late next week, but more then likely the following week.
- All the preliminary testing indicates that the bones, lungs and liver appear to be cancer free.
- We had an ultrasound on the lymph nodes today, and unfortunately, they did find cause to do further testing. I will be have a lymph node biopsy early tomorrow morning.
- We got scheduled to see an oncologist Tuesday of next week (Jay's birthday).
I really, really, really miss my kids and the idea of staying here for as long as I think we are going to have to be down here without them is very hard. Sorry this is so short, but honestly, I have no more energy left today.
Sunday, January 10, 2010
On The Road Again
I woke up this morning, not really looking forward to the goodbyes that were going to have to be said in the next couple of hours. I was feeling a little down (ok... very down) and then I realized that we would be driving right by the Albertville Outlet Mall. I had something to look forward to... a little therapeutic shopping. :-) I think that will be the key to getting thru this ordeal, is looking for the small stuff that can make us smile a little and before we know it, we will be at the end looking back, realizing how far we have come.
So back to today, I sat the kids down, showed them how I had pictures of them loaded on my digital picture frame to take with me, in case I was scheduled for surgery right away, I would have pictures of them to look at when I was missing them. We had fun looking at the pictures and then I kind of explained what we think would be happening at the doctors and what to expect when we got home. I could tell my oldest son was worried but was trying to mask it by being silly, so when I asked him if he had any questions before we left and he said yes, I was bracing myself for a tough discussion. He asked, "Mom, do you know where my Star Wars figurine is?". Yup, I can answer that question!
I really struggle with how much to tell the kids about what is going on, but every time we sit down for a conversation both my husband and I feel led to be as honest as we can and let them ask the questions they want to ask. I just hope this is right. I guess there really isn't an easy way or a right way to deal with "Mommy Has Cancer".
So we said our goodbyes, and yes, there were a few tears and it was sad. But what I realize at the end of the day, is that the reason it was so sad, was because we are so blessed. Yes, I am sad that I have to leave my four precious children behind, but I can be happy (and thankful) that I have them to come back to! So when I return, instead of shopping therapy, I can have some kid therapy.
Subscribe to:
Posts (Atom)