Some may dread April 15th every year....this year, I will not be one of those people! Thursday I had an appointment with Dr. Fine at Northwestern. He is my plastic surgeon. I really didn't know what to expect. My skin is still a little red where it was radiated and the skin is tight and actually feels tighter now than it really had during radiation. This mixed with a deadline to have my reconstruction surgery in enough time to have a 28 day wash out period before June 4 to qualify for this trial. I just wasn't sure I was going to be able to fit in reconstruction and the trial. So I show up Thursday and really felt the worst news they could give me was that my skin was worse off than I thought and that I was going to require the skin grafting surgery when it came time for reconstruction. I was not getting my heart set on him giving me a surgery date. If you have not noticed, things don't always tend to work in my favor.....This could not be more opposite of what actually happened!
Dr. Fine was impressed at how my skin held up during radiation. I explained my time constraints and after careful review, we both decided that I was ready for reconstruction! His first available date is Monday, April 15th. So I will get my new tata's on tax day! I could not be more thrilled! The procedure is an out patient surgery. On my left breast they will go in through my mastectomy scar and remove the expander and put in the implant. On the right side, they actually go in under the right breast because this skin has been radiated so they can not use the current scar. In case you are wondering, I have also decided to stay within a normal size range. Although Dr. Fine feels like I'm ready for surgery, he does not recommend me going with a double E look so I will stay within a normal range for Amber as far as size goes. If this were an elective surgery, I would have to agree go big or go home, but with the circumstances, I really just want this behind me. Dr. Fine and I discussed saline versus silicone and he explained to me that he recommends silicone unless I have a phobia of it. Really? A phobia of silicone....I don't think so, this girl has one fear these days and that is cancer. So bring on April 15th and my new tata's. I have chosen silicone by the way.
After my surgery, he anticipates 3 days of rest and then no restrictions. The clinical trial requires a little longer. I will be eligible for the study on or after May 13 (my deadline was June 4). So I have talked more with the trial coordinator and the plan is to do all my pre-trial blood work and possible scans and heart tests (please start the prayers now) on May 9th. They are researching what tests I will need to do. Since I had so many last June, I'm hoping I don't have a laundry list of tests to do because this is just added anxiety and fear and although I feel better than ever, of course I let the fear creep in of "what if". So prayers can start now if they ever stopped for any of you. I need a trouble free implant surgery and good clean scans in the next months.
After the tests, I will be entered into the system for the trial and randomized which will determine which arm of the trial I receive. I am trying to just not think too far ahead so if you ask, I am not really sure which arm of the study I prefer. The chemo side would obviously be good because I would feel a little more secure and feel like I have some ammo but then again, I may feel bad, weak, low blood levels, more appointments, etc. But the other side is diet and exercise. Do I diet now? Yes. Do I think I am eating the best that I can? No- I am scared to eat. So a majority of the time I eat very little if I do not think it is good for me so calorie wise, I don't think I am getting enough and anyone that has seen me can see it, I have lost too much weight! So getting this arm and being forced to take more time to meet with a nutritionist and being forced to exercise even after putting kids to bed and trying to justify to myself daily that between taking care of the kids and working so hard during the day....this probably is not enough. I need to get out there and sweat some more. And I think I need to do this on my own at times so I have an outlet. So that arm would be great too. But if I get chemo the diet and exercise is also included. So maybe just a tiny bit of me hopes I get the chemo arm. I know I'm sick. But either way, I can't find a reason not to participate. There is too big of a risk of the cancer returning and if I do nothing, I'm afraid if the cancer returned I would have regret. Maybe it will never return, but doing anything possible to stop it from returning sounds a lot better to me! So the fight will begin again soon for me. This time the fight is not to kill a tumor, but a fight to find a cure for me and for every other Triple Negative breast cancer victim out there. So I look forward to the hard work and challenge that is ahead of me.
The kids and Don are doing great! We don't have a lot to report. Justin is on spring break this coming week and doesn't really have much planned. He is enjoying hanging out with the kids at Tiny Treasures. Ryan is doing good. He is still struggling with getting a mouth full of teeth and has recently learned how to use his teeth on people....Not a good thing! I have no idea where this came from, I don't want the kid that bites! So hopefully it is just a phase and he outgrows it fast! But he is trying to talk, he says "go go go", if you ask if he wants a bath he will drop what he is doing and go upstairs and this week starting hugging if one of us asked for a hug. Everyone needs a hug so this just makes me smile and almost cry. Just the cutest thing. We are having the basement finished and the house sided so we have a house of dust these days. it is rather annoying but hopefully it will end soon. And lastly, I made another huge step this past week. I turned in my beautiful Porsche Panamera and we financed a Honda mini van. Just another step in saying good bye to the best job ever. It was very difficult because it forced me to realize that what I have known the past 11 years is coming to an end very quickly.
I hope everyone has a happy Easter and it is spent with wonderful family and or friends. I will keep you posted with the upcoming surgery and of course, please pray for me and for the family.
Love,
Amber
Friday, March 29, 2013
Friday, March 15, 2013
Clinical Trial Update
Hello,
What a great week! Whitney was here visiting us and it felt like old times! We found it hard to believe that she has only been gone for 3 months! It sure does feel like it has been longer. It seems like Ryan remembered who she was and of course Justin was just thrilled! We had Ryan's party last Saturday. It was great to get to see some family and friends! For those of you that were there, thank you for sharing in our special day. For those that couldn't make it or are wondering where your invite was, we kept it to local family and friends, I promise it was not personal:)
This week was fairly uneventful. Of course as much as I was looking forward to a break from Doctors and hospitals, my mind won't sit still, so I met with a new Oncologist in regards to a clinical trial. Dr. Hantel is still my primary Oncologist, but he referred me to Dr. Phillips who is with the University of Chicago to see about doing a clinical Trial. So I met with Dr. Phillips on Thursday. I liked her a lot. Of course opening back up my story to her was difficult. I immediately had a lump in my throat. This news is almost a year old, but when you don't have to explain it to someone in months, it was like ripping off a band-aid or having drains removed for anyone that has had drains. I just hate every detail of cancer! I want to be able to give the time frame, how I found it, when I was diagnosed, etc. without getting that lump! I held it together for the most part!
The study is for Triple Negative breast cancer patients who had residual cancer after chemo and surgery. There are 2 arms to the trial, which it is a flip of a coin as to which one I get. The first is Observation, diet and exercise. The other arm is Chemo, diet and exercise. I am not quite sure which arm I hope to get....The first you are just observed with scans, log your food intake and work with a nutritionist and are required to work out for so many hours per week. The second is chemo every 3 weeks for the first 6 months then chemo every 6 weeks for the remainder of the 2 year study with diet and exercise. Now my first question was, if I get chemo, does that mean I lose my hair for 2 years??? Not that this would make me consider not trying this trial, but it did take my breath away.....2 years? Well, I guess the chemo does not attack all cells, it is focused more towards blood vessels. So I would get to keep my hair! It also does not impact your blood counts (although I heard that with Taxol and ended up struggling to keep my counts up). This arm also has 2 other chemo drugs that are oral. One is taken daily and another is taken only 2 times per week. The biggest side effect they warned me of was it could cause high blood pressure. No one, including myself, is too concerned with this. I may have failed to mention, but all during radiation and even at this appointment the other day, my blood pressure is hovering around 90/50's. I am awake and my ticker is beating but that is low for as busy and stressed as I feel a majority of the time. They think it is low from my anti-depressant I am on. Fine with me, I feel fine and haven't passed out!
The study has not been signed off on at this particular hospital so I can not start just yet. First that has to happen which will probably be within the next couple of weeks. I have a few things I need to check in to first as well. One being my reconstruction. If I get the chemo arm, I would not be able to do reconstruction during this 2 year period. I meet with plastics in 2 weeks. Best case scenario, plastics is happy with my skin and they say they can do reconstruction within the month. If that were to happen (throw me a bone here, I think I deserve this God), then I would get the easy procedure of taking out the expanders and putting in my implants and then could start the study mid-May. If plastics does not think I'm ready to have my reconstruction, I will need to wait because I have to start the study by June 9th. The study has to start within 6 months from my mastectomy surgery. Another thing for me to review is my insurance. I will be able to keep my work's insurance through December, but after that, I go on Don's. Certain things will be covered by the trial, but some stuff is billed to insurance. I need to check to ensure that everything under Don's policy would be covered or as close to covered as possible. So stay tuned!
This coming week should be quiet and uneventful! No appointments. Here's to hoping this remains the new us!! At least until I'm ready to start the study and or do the surgery! It is my terms now cancer. It isn't up to you!
Love to all!
Amber
What a great week! Whitney was here visiting us and it felt like old times! We found it hard to believe that she has only been gone for 3 months! It sure does feel like it has been longer. It seems like Ryan remembered who she was and of course Justin was just thrilled! We had Ryan's party last Saturday. It was great to get to see some family and friends! For those of you that were there, thank you for sharing in our special day. For those that couldn't make it or are wondering where your invite was, we kept it to local family and friends, I promise it was not personal:)
This week was fairly uneventful. Of course as much as I was looking forward to a break from Doctors and hospitals, my mind won't sit still, so I met with a new Oncologist in regards to a clinical trial. Dr. Hantel is still my primary Oncologist, but he referred me to Dr. Phillips who is with the University of Chicago to see about doing a clinical Trial. So I met with Dr. Phillips on Thursday. I liked her a lot. Of course opening back up my story to her was difficult. I immediately had a lump in my throat. This news is almost a year old, but when you don't have to explain it to someone in months, it was like ripping off a band-aid or having drains removed for anyone that has had drains. I just hate every detail of cancer! I want to be able to give the time frame, how I found it, when I was diagnosed, etc. without getting that lump! I held it together for the most part!
The study is for Triple Negative breast cancer patients who had residual cancer after chemo and surgery. There are 2 arms to the trial, which it is a flip of a coin as to which one I get. The first is Observation, diet and exercise. The other arm is Chemo, diet and exercise. I am not quite sure which arm I hope to get....The first you are just observed with scans, log your food intake and work with a nutritionist and are required to work out for so many hours per week. The second is chemo every 3 weeks for the first 6 months then chemo every 6 weeks for the remainder of the 2 year study with diet and exercise. Now my first question was, if I get chemo, does that mean I lose my hair for 2 years??? Not that this would make me consider not trying this trial, but it did take my breath away.....2 years? Well, I guess the chemo does not attack all cells, it is focused more towards blood vessels. So I would get to keep my hair! It also does not impact your blood counts (although I heard that with Taxol and ended up struggling to keep my counts up). This arm also has 2 other chemo drugs that are oral. One is taken daily and another is taken only 2 times per week. The biggest side effect they warned me of was it could cause high blood pressure. No one, including myself, is too concerned with this. I may have failed to mention, but all during radiation and even at this appointment the other day, my blood pressure is hovering around 90/50's. I am awake and my ticker is beating but that is low for as busy and stressed as I feel a majority of the time. They think it is low from my anti-depressant I am on. Fine with me, I feel fine and haven't passed out!
The study has not been signed off on at this particular hospital so I can not start just yet. First that has to happen which will probably be within the next couple of weeks. I have a few things I need to check in to first as well. One being my reconstruction. If I get the chemo arm, I would not be able to do reconstruction during this 2 year period. I meet with plastics in 2 weeks. Best case scenario, plastics is happy with my skin and they say they can do reconstruction within the month. If that were to happen (throw me a bone here, I think I deserve this God), then I would get the easy procedure of taking out the expanders and putting in my implants and then could start the study mid-May. If plastics does not think I'm ready to have my reconstruction, I will need to wait because I have to start the study by June 9th. The study has to start within 6 months from my mastectomy surgery. Another thing for me to review is my insurance. I will be able to keep my work's insurance through December, but after that, I go on Don's. Certain things will be covered by the trial, but some stuff is billed to insurance. I need to check to ensure that everything under Don's policy would be covered or as close to covered as possible. So stay tuned!
This coming week should be quiet and uneventful! No appointments. Here's to hoping this remains the new us!! At least until I'm ready to start the study and or do the surgery! It is my terms now cancer. It isn't up to you!
Love to all!
Amber
Friday, March 1, 2013
Good-bye Radiation!
Since I have been slacking lately and I have a quiet house, I thought I was due an update. Don took Justin to the Blackhawks game (hockey) and Ryan is in bed. I did some work and now it is time to do an update and then relax.
It is hard to believe but this coming week is my last week of Radiation. I am burnt pretty bad, but I was complemented on handling it like a trooper! When you don't know if this is the worst of it, or if the burn could get worse, it is easy to just sit back and enjoy the ride. My armpit has taken the brunt of this. It is peeling and irritated which it doesn't help that shirts or my compression sleeve cause rubbing and probably is making it a little worse. All along the radiation has been shot in 3 different directions. One to the right armpit area, one aimed straight above me and one aimed from the left. Today was my last treatments like this. Next week for 5 days they are called "scar boosters". This is one shot that is aimed directly on my mastectomy scar. Then Friday I will graduate from another life event that I never expected to go through.
So what is going on in my world?? Actually a lot! The house is busy. Justin is learning away in Kindergarten. He wrote and illustrated his first book for Kindergarten's "Young Authors". He is taking Chess lessons on Monday nights through the Park District with the transportation provided by Nana Naughton. And is so loving that NASCAR started back up this past Sunday. He knows every driver and continues to have races with his NASCAR Cars before and after the races, keeping Don and I informed of every last move!
Ryan is going to be ONE on Wednesday. This brings a tear to my eye. I feel like this last year as hard as it has been has just flown by! I do not remember a lot of his "firsts". I am so sad about this! I keep thinking back to last year this time. We were anxiously awaiting the arrival of Ryan. He didnt' have a name until we were driving to the hospital. In fact I had downloaded an app and that you shake your phone and it gives you a name.....Oh the good times! That was one of our biggest concerns with his arrival. So funny how that is a problem that I would take in a heart beat compared to what we didn't know at the time was lying ahead of us. I am happy that his birthday this week will also signify the end to my cancer journey. The journey started on Don and Justin's birthday and will end on Ryan's. A little Ironic, huh?
The biggest news for our family is we have decided not to relocate to Atlanta with my company in June. This was probably one of the toughest decisions I have been faced with. Queue a prayer at this time for me please. How much more can I take is right! During my leave of absence for my surgery, I spent a lot of time (I think) just finding myself. As I have mentioned in the past, I really feel like I was diagnosed and I dove so deeply into water and just swam and didn't come up for a breath until surgery. After surgery when I was healing, I was just able to put things into perspective. That perspective was: I NEED A BREAK AND I NEED TO TAKE CARE OF AMBER. Still that decision was easy to make while I was at home during the day with the kids at day care and still getting paid, driving my fancy Porsche and running errands by myself. Then I went back to work and fell in love all over again with my supportive co-workers and my job. I realize when I am working, I can put aside the daily struggles and just put my heart into my work. But during this return to work, I was struggling so much too. This decision was weighing so heavy on me. Don and I had gone back and forth with so many scenario's. I wanted to make it work so bad, I am not afraid of changing hospitals, Doctors, day cares or houses. What I am afraid of is the stress. I do not think my poor little body can take anymore. Moving to a new place, getting the family situated and our house here sold and then on top of it working with a new staff, just seemed like it might be what finally causes me to break. So one Tuesday afternoon I found it within me to talk to Brian (my boss) and let him in on my decision.
I do not have regret because I know that this is the right thing for me and my family right now. My employer has been wonderful throughout this small little issue and that is what I will always be grateful for. I do not know that I could have handled the chemo, surgery and radiation with so much ease if I did not have the support that I have at Porsche Financial Services! Some of my biggest supporters are there. As we all know, we spend more time with our coworkers then we do with family and I will say that I don't really consider my coworkers as coworkers, I consider them family. It will be a sad day in June when I say good-bye to them. Thankfully I have the support of all of them on my decision and have been told maybe it is just "See you later", rather than good bye. I won't count that out.
There are no big plans for me come June 14th just yet. I plan to take my summer off. I want to get to my parents house and Justin wants to get to Whitney's apartment because he just needs to see where she lives. So some traveling is in store. I also want to spend some time on healing. I continue to hope and pray that I will remain healthy and follow up appointments are the only reason for me to walk into a Cancer Center again. And lastly I just want to enjoy my family and get that Disney trip planned. Hopefully by early fall I will have found what I want to do work-wise and I will be back to working full time, but until then, I just want to slow down and enjoy life more.
This should be a memorable week! Ryan's birthday is Wednesday and then Whitney arrives on Saturday! It will be great to see her again and for her to get to spend the week with us and enjoy the kiddies!
I thank you all for checking in and continuing to pray for me. With radiation coming to an end and me closing the chapter of cancer, I ask that you keep me in your prayers. I am still very fearful of the unknown, but I feel that I am handling it the best I can. Prayers are much appreciative.
I have attached a picture that I took when Justin was around 6 months. I had sent it to my mom at the time and it resurfaced today because she told me that when something happens at her work that is not planned, this picture is attached and sent around to different people. I feel that the picture sums up how myself and my family feels about cancer.....
Enjoy your weekend!
Love,
Amber
It is hard to believe but this coming week is my last week of Radiation. I am burnt pretty bad, but I was complemented on handling it like a trooper! When you don't know if this is the worst of it, or if the burn could get worse, it is easy to just sit back and enjoy the ride. My armpit has taken the brunt of this. It is peeling and irritated which it doesn't help that shirts or my compression sleeve cause rubbing and probably is making it a little worse. All along the radiation has been shot in 3 different directions. One to the right armpit area, one aimed straight above me and one aimed from the left. Today was my last treatments like this. Next week for 5 days they are called "scar boosters". This is one shot that is aimed directly on my mastectomy scar. Then Friday I will graduate from another life event that I never expected to go through.
So what is going on in my world?? Actually a lot! The house is busy. Justin is learning away in Kindergarten. He wrote and illustrated his first book for Kindergarten's "Young Authors". He is taking Chess lessons on Monday nights through the Park District with the transportation provided by Nana Naughton. And is so loving that NASCAR started back up this past Sunday. He knows every driver and continues to have races with his NASCAR Cars before and after the races, keeping Don and I informed of every last move!
Ryan is going to be ONE on Wednesday. This brings a tear to my eye. I feel like this last year as hard as it has been has just flown by! I do not remember a lot of his "firsts". I am so sad about this! I keep thinking back to last year this time. We were anxiously awaiting the arrival of Ryan. He didnt' have a name until we were driving to the hospital. In fact I had downloaded an app and that you shake your phone and it gives you a name.....Oh the good times! That was one of our biggest concerns with his arrival. So funny how that is a problem that I would take in a heart beat compared to what we didn't know at the time was lying ahead of us. I am happy that his birthday this week will also signify the end to my cancer journey. The journey started on Don and Justin's birthday and will end on Ryan's. A little Ironic, huh?
The biggest news for our family is we have decided not to relocate to Atlanta with my company in June. This was probably one of the toughest decisions I have been faced with. Queue a prayer at this time for me please. How much more can I take is right! During my leave of absence for my surgery, I spent a lot of time (I think) just finding myself. As I have mentioned in the past, I really feel like I was diagnosed and I dove so deeply into water and just swam and didn't come up for a breath until surgery. After surgery when I was healing, I was just able to put things into perspective. That perspective was: I NEED A BREAK AND I NEED TO TAKE CARE OF AMBER. Still that decision was easy to make while I was at home during the day with the kids at day care and still getting paid, driving my fancy Porsche and running errands by myself. Then I went back to work and fell in love all over again with my supportive co-workers and my job. I realize when I am working, I can put aside the daily struggles and just put my heart into my work. But during this return to work, I was struggling so much too. This decision was weighing so heavy on me. Don and I had gone back and forth with so many scenario's. I wanted to make it work so bad, I am not afraid of changing hospitals, Doctors, day cares or houses. What I am afraid of is the stress. I do not think my poor little body can take anymore. Moving to a new place, getting the family situated and our house here sold and then on top of it working with a new staff, just seemed like it might be what finally causes me to break. So one Tuesday afternoon I found it within me to talk to Brian (my boss) and let him in on my decision.
I do not have regret because I know that this is the right thing for me and my family right now. My employer has been wonderful throughout this small little issue and that is what I will always be grateful for. I do not know that I could have handled the chemo, surgery and radiation with so much ease if I did not have the support that I have at Porsche Financial Services! Some of my biggest supporters are there. As we all know, we spend more time with our coworkers then we do with family and I will say that I don't really consider my coworkers as coworkers, I consider them family. It will be a sad day in June when I say good-bye to them. Thankfully I have the support of all of them on my decision and have been told maybe it is just "See you later", rather than good bye. I won't count that out.
There are no big plans for me come June 14th just yet. I plan to take my summer off. I want to get to my parents house and Justin wants to get to Whitney's apartment because he just needs to see where she lives. So some traveling is in store. I also want to spend some time on healing. I continue to hope and pray that I will remain healthy and follow up appointments are the only reason for me to walk into a Cancer Center again. And lastly I just want to enjoy my family and get that Disney trip planned. Hopefully by early fall I will have found what I want to do work-wise and I will be back to working full time, but until then, I just want to slow down and enjoy life more.
This should be a memorable week! Ryan's birthday is Wednesday and then Whitney arrives on Saturday! It will be great to see her again and for her to get to spend the week with us and enjoy the kiddies!
I thank you all for checking in and continuing to pray for me. With radiation coming to an end and me closing the chapter of cancer, I ask that you keep me in your prayers. I am still very fearful of the unknown, but I feel that I am handling it the best I can. Prayers are much appreciative.
Enjoy your weekend!
Love,
Amber
Friday, February 8, 2013
Half Way There!
Half way in to radiation! It has been going fairly quickly. I will say it is rather annoying and disruptive to go daily, but I again am reminded that nothing about cancer is not annoying or disruptive! I now go before work, I have a standing appointment at 8 am. It is nice because I think I am the 2nd treatment of the day so they are usually right on time. The entire process from getting undressed to dressed is about a 1/2 hour. The treatment itself takes 10 minutes. On Monday's I see the Doctor after treatment. I am loving Dr. McCall. She has been my only female doctor through all of this and she brings a different prospective to this whole breast cancer thing! I think she can just relate better than my male Doctors and rightfully so. She is just more sensitive to the emotional and physical stuff that goes along with breast cancer. I still love Dr. Hantel when he is nice to me and gives me good news and I am forever thankful to my surgeon and plastic surgeon!
This week towards the end of the week is when I have noticed my skin is starting to take a beating. It feels like I have a bad sun burn, but has started to get itchy and bright red! Today I said to one of the radiation techs that my skin makes me want to barf and she just patted my shoulder and told me if it is making me sick now, she is really sorry. So I guess I am not at the end of this journey just yet! 3 1/2 weeks left.
Last week I came down with the nasty stomach flu and felt worse for 3 days than I did all through chemo. It was rough. The chills, low grade temp, body aches and vomiting. It also came about the same day I bragged that I had not gotten sick. Of course! I recovered nicely and I think that has to be a good sign that my cells are working the way they should be! Oh and in case you are wondering, you still have radiation even if you call the Doctor the night before with a weak and shaky voice from getting sick.....I guess they really frown upon you getting behind, but again I scratch my head if it is that serious that I go with the flu, why they aren't open on Saturday and Sunday or holidays.....I guess I shouldn't complain because I am thinking after today my skin could really use 2 days off.
Today was a very special day! I finally met a wonderful lady Christine! I have spoken of her in the past in my blog. She is fighting breast cancer. My cousin's wife put me in contact with her through e-mail after she was diagnosed in September. Since then, we e-mail back and forth daily. Christine's breast cancer is also serious (not that any form is not) but she has inflammatory breast cancer, which is a rare and aggressive form where the cancer cells block lymph vessels in the skin of the breast. It can spread very quickly. Christine finished chemo 3 weeks ago and has surgery scheduled for this Thursday. During her pre-op appointment yesterday they noticed some abnormalities with her heart. Because of this, she has to have some tests done on Monday. Depending on those results will determine if she can keep her surgery date on Thursday or if she will have to have her heart issues taken care of first. This is horrible news. While chemo maybe saving her life and stopping the progression of the disease, it has also possibly caused damage to her heart. She is really in a hard spot right now. I can not imagine finally getting to the point of the removal of the stupid cancer and then finding out you can't do it because your heart may not withstand being put under. Please pray for her. She needs good news on Monday that it is nothing serious and she is able to have her surgery on Thursday. Again, it was great to finally meet her after several months of going back and forth and both pouring our hearts to each other because at times we feel like we may be the only 2 people that totally get what we are going through! Thank you Amy for putting us in touch with one another. It was a gift from God to both of us!
Other than that, we are marching along! We are doing our best to hold up a family routine. Small things have slipped through the cracks like the laundry doesn't always get folded, the dishwasher unloaded and only once have we almost left for work and day care when Justin realized he didn't have on underwear! I think we are doing okay! It feels good to get back in a routine. I am still doing yoga once a week, eating pretty healthy and resting as much as possible. Justin just had his winter testing scores distributed and scored above average and Ryan is walking everywhere. Just tonight I watched him try to run! OH BOY! It is funny because he can't do it yet (Thank God) but he is trying so hard! I'm sure he will have it mastered by the end of the weekend. Can you believe he will be a year old in less than a month?! Bitter sweet.
Until the next update. We appreciate the continued prayers and please remember to pray for Christine too!
Love always,
Amber
This week towards the end of the week is when I have noticed my skin is starting to take a beating. It feels like I have a bad sun burn, but has started to get itchy and bright red! Today I said to one of the radiation techs that my skin makes me want to barf and she just patted my shoulder and told me if it is making me sick now, she is really sorry. So I guess I am not at the end of this journey just yet! 3 1/2 weeks left.
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| Look at my hair grow! |
Today was a very special day! I finally met a wonderful lady Christine! I have spoken of her in the past in my blog. She is fighting breast cancer. My cousin's wife put me in contact with her through e-mail after she was diagnosed in September. Since then, we e-mail back and forth daily. Christine's breast cancer is also serious (not that any form is not) but she has inflammatory breast cancer, which is a rare and aggressive form where the cancer cells block lymph vessels in the skin of the breast. It can spread very quickly. Christine finished chemo 3 weeks ago and has surgery scheduled for this Thursday. During her pre-op appointment yesterday they noticed some abnormalities with her heart. Because of this, she has to have some tests done on Monday. Depending on those results will determine if she can keep her surgery date on Thursday or if she will have to have her heart issues taken care of first. This is horrible news. While chemo maybe saving her life and stopping the progression of the disease, it has also possibly caused damage to her heart. She is really in a hard spot right now. I can not imagine finally getting to the point of the removal of the stupid cancer and then finding out you can't do it because your heart may not withstand being put under. Please pray for her. She needs good news on Monday that it is nothing serious and she is able to have her surgery on Thursday. Again, it was great to finally meet her after several months of going back and forth and both pouring our hearts to each other because at times we feel like we may be the only 2 people that totally get what we are going through! Thank you Amy for putting us in touch with one another. It was a gift from God to both of us!
Other than that, we are marching along! We are doing our best to hold up a family routine. Small things have slipped through the cracks like the laundry doesn't always get folded, the dishwasher unloaded and only once have we almost left for work and day care when Justin realized he didn't have on underwear! I think we are doing okay! It feels good to get back in a routine. I am still doing yoga once a week, eating pretty healthy and resting as much as possible. Justin just had his winter testing scores distributed and scored above average and Ryan is walking everywhere. Just tonight I watched him try to run! OH BOY! It is funny because he can't do it yet (Thank God) but he is trying so hard! I'm sure he will have it mastered by the end of the weekend. Can you believe he will be a year old in less than a month?! Bitter sweet.
Until the next update. We appreciate the continued prayers and please remember to pray for Christine too!
Love always,
Amber
Thursday, January 24, 2013
Radiation Take 1
Sorry for the long delay in posts, I know you were on pens and needles to find out just what is going on in my wild world! Things are good. I have been keeping extremely busy and I think that has been good for me.
Last week I started back to work on Thursday. Before I go into that, I was so excited to have 3 days (Monday through Wednesday) to myself. The boys were still going to day care and Kindergarten 1/2 of that day for Justin. Monday morning I proved to myself that I was really going to do NOTHING. Yeah right! Just as I was finally smiling about doing nothing, the Kindergarten called that Justin was in the office and had thrown up. So off I go to pick him up. We are home that afternoon and he got sick 3-4 more times. Poor kid, I can not stand to see sick kids. So Tuesday morning we packed Ryan up for day care but Justin was staying home with me. He was still feeling sick so I granted him a movie day. He had gotten through 3 movies when the day care called. Ryan was running a low grade fever. So we picked up Ryan and his cough (he was already getting a cough earlier in the week) sounded worse and his nose was runny. So Wednesday Justin was back at daycare and Kindergarten, but Ryan was sick with the nasty cold virus. I took him to the Dr. to discover he had RSV, but it was not bad enough that it required any breathing treatments, he just needed some extra love and the use of my new favorite baby item.....the "Nosefrida". Look it up if you have not done so. Sounds disgusting, but this little contraption will suck any last remnant of snot out of a child. It works wonders and just so you know, it does not go into the "sucker's" mouth. So by Wednesday evening, I was ready for a break and to return to work.
Work was wonderful! It was nice to get back in to a routine and to figure out what I had missed while I was out. Again, my work has been great through all of this and I could never thank them enough. It felt great to be welcomed back by so many co-workers that I consider friends! That made going back so much easier.
Friday evening my sister Jessica came in by herself. This was nice for us to have a third set of hands there but also nice for her since she cares full time for 3 little ones that have her running in every which direction. Although we did not do a lot, we had a great visit and I was sad to see her go since the next trip is not set in stone. I do better with good byes when I know exactly when I will see someone again!
Monday I took off because it was my final mapping before radiation. I went in and again laid on a table for them to draw all over me and take another set of pictures. This whole radiation thing is a huge process to make sure everything is just right. The staff is so friendly and professional and I have been very impressed! I realize a lot that my life and outcome is in their hands, but their professionalism puts my fears at ease a little. The mapping process took about an hour. I left with new marker marks and stickers all over me. If you saw, you might think I let Justin decorate my body....stickers and markers are right up his alley!
Tuesday started the countdown of radiation. Let me back up a little to Monday just for some laughter. On Monday when I showed up for planning and went to the locker room, I couldn't remember if I was supposed to take only the top half of my clothes off or bottom half too. So I was fretting about that....I don't want to walk in a gown without my pants if I was supposed to leave them on. They will for sure think I'm a weirdo! Don't tell me you have never done this at the Doctor....Did they say the opening should be in the front or back, did they say leave on your bra or take it off. I know you know what I'm talking about. So finally I just bit the bullet and took my pants off. Why should I know what is right or wrong? Well, that was when I came out of the changing room in the locker room and asked the women waiting. I told her I was a rookie. Luckily I was right, you take your top and bottom half off leaving on your under garments! YAY! I did something right!
So next I go in for my treatment and the nurse puts what is called a "Bolus" on my chest. She just said this will help with the radiation. So of course I ask will this help so I do not burn as much? Her reply was no, this will actually make you burn more. Of course that would be the answer.....why would anything in fighting cancer be easy?? The bolus, from my understanding, acts as another layer of skin. The idea is it tricks the radiation treatment into thinking I have thicker skin (Ha!) so it does not radiate as deep into my tissue. 2 reasons from what I have read, 1 is that the tumor was closer to the skin surface so there is not a reason for it to go deeper, the other being that I had a mastectomy and it helps the skin. I will figure this out on Monday. Each Monday I will see the Dr. after my treatment for a check up. So I will get to the bottom of this! I can tell I'm getting a little tan just after 4 treatments. The radiated area is just a little darker than my other skin. It also feels like I have a sunburn a little. I thought it was in my head, but it isn't. It itches just a bit and is hot to touch and clothes touching it kind of feels uncomfortable. Just like a sunburn. Nothing unbearable just yet. I also can tell the fatigue is back. It could be working too, but I am tired!!
Speaking of tired, Ryan just went down and Justin is just about ready to go to bed so I think I will take advantage of a quiet house and try to get an extra hour or 2 in too. Thanks for checking in!!
Love,
Amber
Last week I started back to work on Thursday. Before I go into that, I was so excited to have 3 days (Monday through Wednesday) to myself. The boys were still going to day care and Kindergarten 1/2 of that day for Justin. Monday morning I proved to myself that I was really going to do NOTHING. Yeah right! Just as I was finally smiling about doing nothing, the Kindergarten called that Justin was in the office and had thrown up. So off I go to pick him up. We are home that afternoon and he got sick 3-4 more times. Poor kid, I can not stand to see sick kids. So Tuesday morning we packed Ryan up for day care but Justin was staying home with me. He was still feeling sick so I granted him a movie day. He had gotten through 3 movies when the day care called. Ryan was running a low grade fever. So we picked up Ryan and his cough (he was already getting a cough earlier in the week) sounded worse and his nose was runny. So Wednesday Justin was back at daycare and Kindergarten, but Ryan was sick with the nasty cold virus. I took him to the Dr. to discover he had RSV, but it was not bad enough that it required any breathing treatments, he just needed some extra love and the use of my new favorite baby item.....the "Nosefrida". Look it up if you have not done so. Sounds disgusting, but this little contraption will suck any last remnant of snot out of a child. It works wonders and just so you know, it does not go into the "sucker's" mouth. So by Wednesday evening, I was ready for a break and to return to work.
Work was wonderful! It was nice to get back in to a routine and to figure out what I had missed while I was out. Again, my work has been great through all of this and I could never thank them enough. It felt great to be welcomed back by so many co-workers that I consider friends! That made going back so much easier.
Friday evening my sister Jessica came in by herself. This was nice for us to have a third set of hands there but also nice for her since she cares full time for 3 little ones that have her running in every which direction. Although we did not do a lot, we had a great visit and I was sad to see her go since the next trip is not set in stone. I do better with good byes when I know exactly when I will see someone again!
Monday I took off because it was my final mapping before radiation. I went in and again laid on a table for them to draw all over me and take another set of pictures. This whole radiation thing is a huge process to make sure everything is just right. The staff is so friendly and professional and I have been very impressed! I realize a lot that my life and outcome is in their hands, but their professionalism puts my fears at ease a little. The mapping process took about an hour. I left with new marker marks and stickers all over me. If you saw, you might think I let Justin decorate my body....stickers and markers are right up his alley!
Tuesday started the countdown of radiation. Let me back up a little to Monday just for some laughter. On Monday when I showed up for planning and went to the locker room, I couldn't remember if I was supposed to take only the top half of my clothes off or bottom half too. So I was fretting about that....I don't want to walk in a gown without my pants if I was supposed to leave them on. They will for sure think I'm a weirdo! Don't tell me you have never done this at the Doctor....Did they say the opening should be in the front or back, did they say leave on your bra or take it off. I know you know what I'm talking about. So finally I just bit the bullet and took my pants off. Why should I know what is right or wrong? Well, that was when I came out of the changing room in the locker room and asked the women waiting. I told her I was a rookie. Luckily I was right, you take your top and bottom half off leaving on your under garments! YAY! I did something right!
So next I go in for my treatment and the nurse puts what is called a "Bolus" on my chest. She just said this will help with the radiation. So of course I ask will this help so I do not burn as much? Her reply was no, this will actually make you burn more. Of course that would be the answer.....why would anything in fighting cancer be easy?? The bolus, from my understanding, acts as another layer of skin. The idea is it tricks the radiation treatment into thinking I have thicker skin (Ha!) so it does not radiate as deep into my tissue. 2 reasons from what I have read, 1 is that the tumor was closer to the skin surface so there is not a reason for it to go deeper, the other being that I had a mastectomy and it helps the skin. I will figure this out on Monday. Each Monday I will see the Dr. after my treatment for a check up. So I will get to the bottom of this! I can tell I'm getting a little tan just after 4 treatments. The radiated area is just a little darker than my other skin. It also feels like I have a sunburn a little. I thought it was in my head, but it isn't. It itches just a bit and is hot to touch and clothes touching it kind of feels uncomfortable. Just like a sunburn. Nothing unbearable just yet. I also can tell the fatigue is back. It could be working too, but I am tired!!
Speaking of tired, Ryan just went down and Justin is just about ready to go to bed so I think I will take advantage of a quiet house and try to get an extra hour or 2 in too. Thanks for checking in!!
Love,
Amber
Friday, January 11, 2013
Week 5 Post Surgery
An update on a Friday. It has been awhile since I have done this! Not having chemo has gotten me off course! This was my last full week off before returning to work, next Thursday. I have to say I have really enjoyed my time off. While it was more of a recovery than I expected, I have to say I have enjoyed myself.....But I would rather not do this again!
This week we put Ryan back in daycare. I thought it was best that he have a week or 2 under his belt before I go back to work. It has been awhile since he has been with his little friends at Tiny Treasures. I also wanted to ease into the drop off, pick up, washing bottles, making bottles, baths, homework, dinner, bottle, rocking and reading schedule for both of the boys before we are back to a 2 working parent household! I would say it is going okay so far. I have noticed Ryan doesn't want me out of his sight when he gets home. He is very clingy so it is hard to get a lot done. Since he loves his bath, when nothing else gets him off of me, the bath works! Justin is doing fine back at Kindergarten. No homework this week so that has been helpful! We are slowly easing back in to doing his site words and reading books. So by next Thursday when I return to work, we should have this all mastered! Wish us luck!!
Monday I had my radiation planning and Occupational Therapy appointment. The planning was somewhat painful. They have you lay on the CT scan table and you lay with your arms up behind your head. Normally this might be comfortable, but still healing, it was a bit painful after awhile. While you lay there, they are taking your picture from all different angles, measuring and marking my body. It was very strange! You have to have this just right to ensure they are radiating the right person and in the right areas. Next they placed this mold under my head and arms and taped me to it. I thought it was a joke and then remembered where I was. As I was taped up, you could feel the mold forming to my body. This will be used everyday to keep me in just the right pose. Next they ran me through a CT Scan and then gave me 3 beautiful tattoo's. One under each arm pit and one in the center of my chest. I also have red marker with permanent type tape all down the center of my chest that will stay there until radiation is over. I have tried, so far, these have not worn off so I can only imagine how it will feel when I am done and they rip these suckers off! The nurses I had were wonderful.
Next I had Occupational Therapy. This is due to the removal of 19 lymph nodes and the concern of lymphedema. They had me stretch in all different ways and measured my ranges. They also measured both of my arms. Funny that my right arm, which is the one that is at risk, is actually measuring a little smaller than my left arm so I take that as good news. They gave me some stretches and massages to do at home and want me there for the next month on Monday and Wednesdays. On Wednesday when I returned the therapist massaged my armpit for a good 45 minutes. It is a little awkward but feels awesome because it is still so tight from surgery. Between Monday and Wednesday I gained 10 "somethings" when they measured my range. That is great! I did my homework and also did yoga on Monday night so I'm sure a mixture of both worked. So I'm well on my way here!
I was also fitted for a compression sleeve to wear on my right arm. It is a big pain! It is just so annoying and the thought of putting it on every day makes me mad. Right now they are saying I need to wear it when I am awake but can take it off to sleep for the next 6 months. I have noticed I sleep more now so I can take it off! Just kidding, but I really am not in love with this thing at all! My hope is they stick with the 6 month thing.
Other than those appointments, I have just been trying to focus on myself. Being home this week I realized how little time I have spent trying to focus on myself. For the most part, I chose to ignore myself. I feel like I was diagnosed and I dove under water and just swam and didn't come up for a breath until now. Looking back, the past 6 months is such a blur. I did what I knew how to get through it....ignoring as much as possible that I was sick. While I don't regret my method, being home I have realized how much I really need to concentrate on myself in order to stay out of cancer trouble. So I have spent some time reading up on natural methods to stay healthy. I also spent some time earlier this week with a lovely lady who is battling her own illness and with diet, she has been able to stay on top of her cancer for the past 2 years. She was nice enough to share some tips with me, which I am working on incorporating. I have also started a yoga class, which I love!
I feel great about things right now and just feel at peace. I have been derailed from this feeling before and I am anticipating this feeling could again be taken away from me, but knowing that I am doing everything in my power makes me feel like I am making more of a difference. I have never just laid down to let cancer win, but I am back and my mind set is where it needs to be to start kicking cancer butt again!!
Have a wonderful weekend. Oh and in case you ever wanted to know, I received my explanation of benefits for my surgery today. I could not believe a bilateral mastectomy costs $69,000! YIKES! I'm so blessed to have a wonderful job with awesome benefits!
Love,
Amber
This week we put Ryan back in daycare. I thought it was best that he have a week or 2 under his belt before I go back to work. It has been awhile since he has been with his little friends at Tiny Treasures. I also wanted to ease into the drop off, pick up, washing bottles, making bottles, baths, homework, dinner, bottle, rocking and reading schedule for both of the boys before we are back to a 2 working parent household! I would say it is going okay so far. I have noticed Ryan doesn't want me out of his sight when he gets home. He is very clingy so it is hard to get a lot done. Since he loves his bath, when nothing else gets him off of me, the bath works! Justin is doing fine back at Kindergarten. No homework this week so that has been helpful! We are slowly easing back in to doing his site words and reading books. So by next Thursday when I return to work, we should have this all mastered! Wish us luck!!
Monday I had my radiation planning and Occupational Therapy appointment. The planning was somewhat painful. They have you lay on the CT scan table and you lay with your arms up behind your head. Normally this might be comfortable, but still healing, it was a bit painful after awhile. While you lay there, they are taking your picture from all different angles, measuring and marking my body. It was very strange! You have to have this just right to ensure they are radiating the right person and in the right areas. Next they placed this mold under my head and arms and taped me to it. I thought it was a joke and then remembered where I was. As I was taped up, you could feel the mold forming to my body. This will be used everyday to keep me in just the right pose. Next they ran me through a CT Scan and then gave me 3 beautiful tattoo's. One under each arm pit and one in the center of my chest. I also have red marker with permanent type tape all down the center of my chest that will stay there until radiation is over. I have tried, so far, these have not worn off so I can only imagine how it will feel when I am done and they rip these suckers off! The nurses I had were wonderful.
Next I had Occupational Therapy. This is due to the removal of 19 lymph nodes and the concern of lymphedema. They had me stretch in all different ways and measured my ranges. They also measured both of my arms. Funny that my right arm, which is the one that is at risk, is actually measuring a little smaller than my left arm so I take that as good news. They gave me some stretches and massages to do at home and want me there for the next month on Monday and Wednesdays. On Wednesday when I returned the therapist massaged my armpit for a good 45 minutes. It is a little awkward but feels awesome because it is still so tight from surgery. Between Monday and Wednesday I gained 10 "somethings" when they measured my range. That is great! I did my homework and also did yoga on Monday night so I'm sure a mixture of both worked. So I'm well on my way here!
I was also fitted for a compression sleeve to wear on my right arm. It is a big pain! It is just so annoying and the thought of putting it on every day makes me mad. Right now they are saying I need to wear it when I am awake but can take it off to sleep for the next 6 months. I have noticed I sleep more now so I can take it off! Just kidding, but I really am not in love with this thing at all! My hope is they stick with the 6 month thing.
Other than those appointments, I have just been trying to focus on myself. Being home this week I realized how little time I have spent trying to focus on myself. For the most part, I chose to ignore myself. I feel like I was diagnosed and I dove under water and just swam and didn't come up for a breath until now. Looking back, the past 6 months is such a blur. I did what I knew how to get through it....ignoring as much as possible that I was sick. While I don't regret my method, being home I have realized how much I really need to concentrate on myself in order to stay out of cancer trouble. So I have spent some time reading up on natural methods to stay healthy. I also spent some time earlier this week with a lovely lady who is battling her own illness and with diet, she has been able to stay on top of her cancer for the past 2 years. She was nice enough to share some tips with me, which I am working on incorporating. I have also started a yoga class, which I love!
I feel great about things right now and just feel at peace. I have been derailed from this feeling before and I am anticipating this feeling could again be taken away from me, but knowing that I am doing everything in my power makes me feel like I am making more of a difference. I have never just laid down to let cancer win, but I am back and my mind set is where it needs to be to start kicking cancer butt again!!
Have a wonderful weekend. Oh and in case you ever wanted to know, I received my explanation of benefits for my surgery today. I could not believe a bilateral mastectomy costs $69,000! YIKES! I'm so blessed to have a wonderful job with awesome benefits!
Love,
Amber
Sunday, January 6, 2013
Family of Four
Whitney left on Wednesday. Yes, we did it! Both of us let go! New Years day was difficult for both of us. The crying started first thing when I woke up imagining she wouldn't be there the next morning. It is not all about her unselfishness and help, it was about the bond her and I made and the bond she made with both Justin and Ryan. We went to her favorite Japanese restaurant for lunch and then we decided it was best if we found something to fill some time so we went to an afternoon movie. The hardest was at bed time when she rocked Ryan to sleep and then came back to cuddle some with Justin. I knew as much as my heart was breaking, her heart was breaking more. At times during the 6 short months she was here, she was more of a mommy to the boys than I was able to be. She played, pretended, built forts, reprimanded, picked up, dropped off....She did it all.
When I needed an ear, she was there. I could tell her things that I know sounded goofy to say them out loud. I know I'm not silent about a lot, but going through this, I would think a lot about different things, and I could shoot them off of Whitney. Whether it be about life, illness, my faith in God, anything. She didn't have to give me answers, her ear was all I needed and my comfort with her made this possible. She looked at me like I was crazy only once that I recall and that was when I asked her if she thought I would be like a baby and if I kept laying down, I would get a bald spot in the back of my head. She wasn't much help with that one.....So far so good and I have done a lot of laying down;)
I will never be able to thank Whitney enough for all she has done for us. When I look at pictures or think about different things this past 6 months, I get sad. Not that I am sick, but sad that she is gone and some of my best memories now with her revolve around the worst part of my life. I do not think I could have made it through the chemo, the transfusion, the what ifs.....this nightmare with out her walking by my side. She was and is my rock! Thank you every second of the day Whitney for all you have done!
Friday I received my double expansion! It is actually pretty cool how it works. The Dr. searches for the "port" within the expansion with a magnet. Once it is found, they place a needle into my skin (I couldn't feel it due to the nerve damage) and then she uses a syringe to pump in saline. She did 50cc per side at first and while I could feel the stretch, I asked for more. So she did another 50 per side. It is actually very strange to watch your breasts grow right in front of your eyes....Literally! But I feel a lot more comfortable than I did before this. As I mentioned, I came out of surgery with a little lift, but I wanted more. Now I feel pretty comfortable, but could see myself still wanting more;) Go big or go home, right? I will not have another expansion until after radiation.
On the recovery front, I'm doing well. My arms will almost stretch completely above my head with little pain. Tomorrow I will have my radiation planning in the morning and after that I am meeting with an Occupational Therapist to go over exercises and massages to do to help prevent Lymphedema. I am at a big risk due to the number of lymph nodes that were removed and because I am required to lift so much (my 20 lbs 10 month old) So I will meet with them to see what they can offer. Tomorrow evening I will start back with yoga. I'm going to try out a place by my house and the first class is for people that have had a surgery or an injury to help with healing.
I have also spoken with a clinical trial coordinator with the University of Chicago in regards to a trial for Triple Negative breast cancer. The study is in regards to prevention of recurrence with diet and exercise. I can not start this until I am done with radiation, but the timing is perfect because the trial doesn't open until mid-February. It consists of 4 arms: 1. diet 2. diet and exercise 3. diet and chemo 4. diet, exercise and chemo. It is a blind draw as to which one I would get, but it is a 6 month study. They assist with diet, exercise and if I received one of them with chemo, I would get the chemo through the satellite hospital right in New Lenox. So I am excited that there is something else I will feel like I'm doing to help keep this cancer away after radiation is over.
For now, it is all about learning and changing my diet. I have had a lot of people reach out to me with this and again, I feel so thankful that I have just the right people in my life at all times looking out for me and my best interest. It is difficult to change, but it is required. So please keep up with the diet ideas, recipes, etc. I appreciate it!
I will update more after planning this week. Enjoy your remaining weekend and week!
Amber
When I needed an ear, she was there. I could tell her things that I know sounded goofy to say them out loud. I know I'm not silent about a lot, but going through this, I would think a lot about different things, and I could shoot them off of Whitney. Whether it be about life, illness, my faith in God, anything. She didn't have to give me answers, her ear was all I needed and my comfort with her made this possible. She looked at me like I was crazy only once that I recall and that was when I asked her if she thought I would be like a baby and if I kept laying down, I would get a bald spot in the back of my head. She wasn't much help with that one.....So far so good and I have done a lot of laying down;)
I will never be able to thank Whitney enough for all she has done for us. When I look at pictures or think about different things this past 6 months, I get sad. Not that I am sick, but sad that she is gone and some of my best memories now with her revolve around the worst part of my life. I do not think I could have made it through the chemo, the transfusion, the what ifs.....this nightmare with out her walking by my side. She was and is my rock! Thank you every second of the day Whitney for all you have done!
Friday I received my double expansion! It is actually pretty cool how it works. The Dr. searches for the "port" within the expansion with a magnet. Once it is found, they place a needle into my skin (I couldn't feel it due to the nerve damage) and then she uses a syringe to pump in saline. She did 50cc per side at first and while I could feel the stretch, I asked for more. So she did another 50 per side. It is actually very strange to watch your breasts grow right in front of your eyes....Literally! But I feel a lot more comfortable than I did before this. As I mentioned, I came out of surgery with a little lift, but I wanted more. Now I feel pretty comfortable, but could see myself still wanting more;) Go big or go home, right? I will not have another expansion until after radiation.
On the recovery front, I'm doing well. My arms will almost stretch completely above my head with little pain. Tomorrow I will have my radiation planning in the morning and after that I am meeting with an Occupational Therapist to go over exercises and massages to do to help prevent Lymphedema. I am at a big risk due to the number of lymph nodes that were removed and because I am required to lift so much (my 20 lbs 10 month old) So I will meet with them to see what they can offer. Tomorrow evening I will start back with yoga. I'm going to try out a place by my house and the first class is for people that have had a surgery or an injury to help with healing.
I have also spoken with a clinical trial coordinator with the University of Chicago in regards to a trial for Triple Negative breast cancer. The study is in regards to prevention of recurrence with diet and exercise. I can not start this until I am done with radiation, but the timing is perfect because the trial doesn't open until mid-February. It consists of 4 arms: 1. diet 2. diet and exercise 3. diet and chemo 4. diet, exercise and chemo. It is a blind draw as to which one I would get, but it is a 6 month study. They assist with diet, exercise and if I received one of them with chemo, I would get the chemo through the satellite hospital right in New Lenox. So I am excited that there is something else I will feel like I'm doing to help keep this cancer away after radiation is over.
For now, it is all about learning and changing my diet. I have had a lot of people reach out to me with this and again, I feel so thankful that I have just the right people in my life at all times looking out for me and my best interest. It is difficult to change, but it is required. So please keep up with the diet ideas, recipes, etc. I appreciate it!
I will update more after planning this week. Enjoy your remaining weekend and week!
Amber
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