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
Thursday, January 24, 2013
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
Sunday, December 30, 2012
See Ya 2012!
Merry belated Christmas and Early New Years! This has been a fun-filled week. My entire family arrived on Christmas Eve and our house has not been quiet since! It is really great to see Justin play with his cousins that he does not see near enough. How Jess and I ended up with all boys is beyond me! They have played with just about everything imaginable in this house! From Santa gifts to toys that Justin forgot he had! It has been so fun! Even little Ryan is enjoying himself and trying to fit in with the big boys! When he isn't fitting in, there has always been a helping hand to take him to cuddle!
Yesterday Mom, Jess and Whitney spent the day in our kitchen preparing meals for Don and I to freeze and just pop in the oven. This will be great especially after I return to work and am tired from radiation. This will be a huge help for us. They did this while the dads, Papa's and I took the older kids to bowl. Ryan and my nephew Tyson stayed back. Ryan because he has not learned to perfect his bowling game and Tyson because he has caught some sort of a flu bug.
Mom and Dad left early this morning:( They are going to try to drive straight through. Jess and her family will leave tomorrow afternoon and then Whitney will ring in the New Year with us and leave on Wednesday morning:( It will be one sad week for us Naughton's! I always hate when family leaves and the house is quiet, but this time will be so much different. My family has done so much to help me through this and I can't say thank you enough to them because I am sick of crying and it makes me cry to say it out loud. And if I cry, they cry and I don't want to cry today or tomorrow so I will write it: THANK YOU AND I LOVE YOU ALL VERY MUCH!! (queue the crying)
As far as how I'm doing, well, things are great! It is easy to block out cancer when you are busy watching your family enjoy themselves! But in all seriousness, I am doing okay. I am sleeping a little better and my anxiety seems in control. It probably has to do with the meds, but I am fine with that! Healing is going great! I returned to the Plastic surgeon on Friday for what I was hoping to be my first expansion. Unfortunately that did not happen. But the Dr. was satisfied with my healing. It turns out a couple of weeks ago when they thought the skin on the right breast was dying, that was not the case. When the Dr. looked at it on Friday, she confirmed it was blood stuck between the stitches and the glue they put on. ***SKIP IF YOU ARE QUEASY**** so she had me lay down and she picked off the glue. They are correct when they say you lose all feeling in your chest area, because I could not feel a thing, but I can imagine this would really hurt! Whitney watched and said it looked a lot better. It bled some which made the Dr. happy because that means it has good blood supply. She put strips on it and I have not been able to get them off just yet so I have not seen how much better it looks. I am scheduled for this coming Friday to do a double expansion if I can stand it and then radiation planning will be the following Monday. I am hoping I can stand a double expansion. I think I will be able to because I will know this is the only chance to do them until after radiation. Although I have a little lift already, I want more. I'm a little greedy! I still have restrictions, but can do a little more. I can carry and hold Ryan. I can not do anything that requires the use of my pectoral muscles, so I can't get back into bench pressing just yet. I also should not run or jump, both things I have also missed a lot!
With New Years right around the corner I have a few resolutions. The most important one is eating healthy. I have been gearing up for this by eating anything that I want this week. Next is working out. Again, not something I do enough of besides chasing children. And lastly, enjoy life the way I have the past 6 months. I can not say enough how ready I am for 2012 to come to an end! The birth of Ryan was very special, but this cancer thing came along and just destroyed my year! Bring on 2013. I'm ready!!
Happy New Years To All!!
Love always,
Amber
Saturday, December 22, 2012
Week 2 Post Surgery
What a week! It has been a week filled with all different emotions! Last Friday I met with my Plastic Surgeon. Tuesday I saw my general surgeon. The appointment lasted maybe 10 minutes, just the way I like it! Dr. Bethke felt I was healing well and does not need to see me for 6 months. Wednesday I met with the radiation Doctor and I have to say I love her already. She is the sweetest lady ever. Instead of shaking hands, she hugs:) Thursday we took Ryan to his 9 month check up and a shot. Friday, Ryan woke up running a high fever and must have been really feeling crummy because Ryan does not ever sit still and he spent Friday just cuddling with Whitney. In the afternoon I went up to Naperville to meet Don to go over my pathology report with Dr. Hantel.
Plastic Surgeon: Last Friday I visited my plastic surgeon and they removed my drains! YAY! I will have to say the pain when they remove these is right up there with child birth! Holy cow! I had no idea what to expect and even though my chest area is numb, I felt so much! They did my right side first and I got teary eyed but by the left side, she removed both drains at the same time to I think avoid extra pain and it was like Ralphy on the Christmas Story when he is helping his father change the flat tire.....It was an out of body experience and the Physician assistant you could tell was entertained with my flavorful language! My goodness was this uncomfortable pain! But they are out!! I will go back on December 28th for another visit. They are concerned about the healing on my right breast. It looks as though some of the skin has died. This is, I'm told "normal". The next appointment will consist of the removal of some of the dead skin and or my first expansion. They are hoping to do a couple expansions before they have to stop. You can not do any expansion after a "planning" session for radiation. (Explained below). They will not release me for radiation until the skin is ready, which is usually 4-6 weeks post surgery.
Radiation: I am tentatively set up to have my "Planning" session for radiation on January 7th. This consists of a CT scan to have clarification of where everything is inside of me in regards to my ribs, lungs, heart, etc. They will also build a mold of my upper body so when I come in for radiation, I am in the same position each time. They will also tattoo me so that they know just where the beams of radiation need directed. If all goes as planned, I will then have a dress rehearsal on January 21st and if everything lines up correctly, radiation will start January 22nd. I will have 6 1/2 weeks, 5 days a week of radiation. I laugh, because they do not do radiation on holiday or weekends....Guess cancer does not grow on these days! Just another reason it should always be the weekend!!! The radiation will cover my right armpit, neck all the way down to below the breast. Side effects are dry, itchy, sun-burned type skin. Also fatigue and possibly a hoarse voice since the area they are aiming at is close to my neck / vocal cords. I have all of my appointments set up. The plan is for the first couple of weeks, I will go at 3:30 because that is the only appointment they have. It is sort of a seniority thing.... Not really but the ones going through it currently have all of the good spots, but people are constantly finishing. Starting February 1st, I will be at 8:00 am every day. The hospital where I have chosen is right by the interstate for me to get on to go to work. So it will just become a part of my routine. If all goes as planned, my last session might be on Ryan's birthday. So a reason to celebrate....I hope so!
Oncologist: My appointment was yesterday at 1:45. Don met me there. I have to admit it felt good to go in there yesterday. I miss the staff. What didn't make me happy was how busy the waiting room was. It just makes me so sad! We met with Dr. Hantel, I have never had such a serious appointment. I am hoping some of it was we have not seen each other in awhile so we were just off. I'm not quite sure though. Dr. Hantel reviewed my pathology and explained that although I am cancer free currently, the form of breast cancer I have (Triple Negative), there is a high chance that it could return. He explained things that I have already known, but to hear it again hurt.....Unlike hormonal forms of breast cancer, there is nothing out there proven to keep the cancer away. Remember, a hormonal breast cancer can be plugged with a pill that is taken daily by the survivor for 5 years to keep the nasty cancer away. Tht doesn't always mean the pill works, but it is something. There is nothing for Triple Negative. Again, I have known all of this so this was not news to me. But being done with chemo and now surgery and then to hear we are at a fork in the road: Will I choose the path where I am cancer free or the path that has cancer.... I felt again like I had an out of body experience, I begged Dr. Hantel to find something to help me. He could sense my fear and concern and I believe felt the same way. I truly have begged with God through all of this in my prayers, but never out loud. I need help! I don't ask for it often, but please help me!! He informed me he has talked about my case with a few colleagues and they do not believe there would be any benefit for more chemo. And there are not many clinical trials that he would consider for me or that I would qualify for. After begging some more and bringing out the water works, he said he has one more outlet that he will look into. This would be a chemo pill used for kidney cancer. There is not a lot out there that shows it does any good or bad for breast cancer patients. He told me he would look into this and get back to me next week, but not to get too excited about it. For now, he explained that I am cancer free and need to just focus on that. Not very easy to do....I left there with a better sleeping pill and an anti-depressant to help with the anxiety.
Again, nothing he told me yesterday I have not researched or been told previously. I think what was so difficult is yet again I am helpless and do not have any control of what path my body will take in this. Since June, I have been able to rely on chemo to fight off the bad guys. Then there was surgery that removed that unwanted tumor and even though I had lymph node involvement, I felt good about things, that big nagging tumor that I woke up to daily and felt was gone. That was reason enough to celebrate! It wasn't until yesterday and being told there is nothing to keep the cancer away that I panicked and I think let myself come down from my high and back to reality that I will NEVER be the same Amber that I was before. I have not let the fear of death creep in for so long, but I have to say it is back! I just can not understand why there is not anything else that can keep me cancer free!
So yesterday was one big pity party for myself which I again, have not done in a long time! I am trying to remind myself of all I have been through these past 6 months and if it were not for the missing hair, I would think I could still fool most people that I am not fighting for my life. I will get back my fighting attitude and continue my goal which is to continue week after week, month after month and year after year, to walk into Dr. Hantel and Dr. Bethke's office and have them shake their head at me that I am still around. I know the odds are not in my favor and that really sucks a lot, but no one knows my fate and that is what I have to remind myself of every minute, day, week, month or year. However many times that I need to.
So I woke up this morning and cried at first, then I got up and decided I have to live like I was living before seeing Dr. Hantel yesterday. It is his job to inform and educate me to the best of his ability, but it is my job to live my life. So I'm not back on track, but getting there!
My mom and dad are driving in from NC. Please pray for them. They will spend today through Christmas Eve with their mothers and then drive up to our place after Midnight mass with my Grandma Freeland on Christmas Eve. Jessica and her family fly in on the evening of Christmas Eve too. Please pray for their safe arrival and an uneventful flight for her and Eric since traveling with 3 kids does not sound too appealing.
Please continue to pray for my family. They are what keep me going, but I know they struggle just as much as I do. I need extra prayers for myself for the continued healing, emotional stability and for me to just trust that my body will do what it is supposed to do for once and keep the stupid cancer far away!!
Merry Christmas to all and Happy New Year! Since the world did not end (I have say I didn't want it to end, but I was hoping for a do-over or something where all evil disappeared which included cancer, diseases and bad people) Here is to a cancer, disease and evil free 2013!!
Lots of Love,
Amber
Plastic Surgeon: Last Friday I visited my plastic surgeon and they removed my drains! YAY! I will have to say the pain when they remove these is right up there with child birth! Holy cow! I had no idea what to expect and even though my chest area is numb, I felt so much! They did my right side first and I got teary eyed but by the left side, she removed both drains at the same time to I think avoid extra pain and it was like Ralphy on the Christmas Story when he is helping his father change the flat tire.....It was an out of body experience and the Physician assistant you could tell was entertained with my flavorful language! My goodness was this uncomfortable pain! But they are out!! I will go back on December 28th for another visit. They are concerned about the healing on my right breast. It looks as though some of the skin has died. This is, I'm told "normal". The next appointment will consist of the removal of some of the dead skin and or my first expansion. They are hoping to do a couple expansions before they have to stop. You can not do any expansion after a "planning" session for radiation. (Explained below). They will not release me for radiation until the skin is ready, which is usually 4-6 weeks post surgery.
Radiation: I am tentatively set up to have my "Planning" session for radiation on January 7th. This consists of a CT scan to have clarification of where everything is inside of me in regards to my ribs, lungs, heart, etc. They will also build a mold of my upper body so when I come in for radiation, I am in the same position each time. They will also tattoo me so that they know just where the beams of radiation need directed. If all goes as planned, I will then have a dress rehearsal on January 21st and if everything lines up correctly, radiation will start January 22nd. I will have 6 1/2 weeks, 5 days a week of radiation. I laugh, because they do not do radiation on holiday or weekends....Guess cancer does not grow on these days! Just another reason it should always be the weekend!!! The radiation will cover my right armpit, neck all the way down to below the breast. Side effects are dry, itchy, sun-burned type skin. Also fatigue and possibly a hoarse voice since the area they are aiming at is close to my neck / vocal cords. I have all of my appointments set up. The plan is for the first couple of weeks, I will go at 3:30 because that is the only appointment they have. It is sort of a seniority thing.... Not really but the ones going through it currently have all of the good spots, but people are constantly finishing. Starting February 1st, I will be at 8:00 am every day. The hospital where I have chosen is right by the interstate for me to get on to go to work. So it will just become a part of my routine. If all goes as planned, my last session might be on Ryan's birthday. So a reason to celebrate....I hope so!
Oncologist: My appointment was yesterday at 1:45. Don met me there. I have to admit it felt good to go in there yesterday. I miss the staff. What didn't make me happy was how busy the waiting room was. It just makes me so sad! We met with Dr. Hantel, I have never had such a serious appointment. I am hoping some of it was we have not seen each other in awhile so we were just off. I'm not quite sure though. Dr. Hantel reviewed my pathology and explained that although I am cancer free currently, the form of breast cancer I have (Triple Negative), there is a high chance that it could return. He explained things that I have already known, but to hear it again hurt.....Unlike hormonal forms of breast cancer, there is nothing out there proven to keep the cancer away. Remember, a hormonal breast cancer can be plugged with a pill that is taken daily by the survivor for 5 years to keep the nasty cancer away. Tht doesn't always mean the pill works, but it is something. There is nothing for Triple Negative. Again, I have known all of this so this was not news to me. But being done with chemo and now surgery and then to hear we are at a fork in the road: Will I choose the path where I am cancer free or the path that has cancer.... I felt again like I had an out of body experience, I begged Dr. Hantel to find something to help me. He could sense my fear and concern and I believe felt the same way. I truly have begged with God through all of this in my prayers, but never out loud. I need help! I don't ask for it often, but please help me!! He informed me he has talked about my case with a few colleagues and they do not believe there would be any benefit for more chemo. And there are not many clinical trials that he would consider for me or that I would qualify for. After begging some more and bringing out the water works, he said he has one more outlet that he will look into. This would be a chemo pill used for kidney cancer. There is not a lot out there that shows it does any good or bad for breast cancer patients. He told me he would look into this and get back to me next week, but not to get too excited about it. For now, he explained that I am cancer free and need to just focus on that. Not very easy to do....I left there with a better sleeping pill and an anti-depressant to help with the anxiety.
Again, nothing he told me yesterday I have not researched or been told previously. I think what was so difficult is yet again I am helpless and do not have any control of what path my body will take in this. Since June, I have been able to rely on chemo to fight off the bad guys. Then there was surgery that removed that unwanted tumor and even though I had lymph node involvement, I felt good about things, that big nagging tumor that I woke up to daily and felt was gone. That was reason enough to celebrate! It wasn't until yesterday and being told there is nothing to keep the cancer away that I panicked and I think let myself come down from my high and back to reality that I will NEVER be the same Amber that I was before. I have not let the fear of death creep in for so long, but I have to say it is back! I just can not understand why there is not anything else that can keep me cancer free!
So yesterday was one big pity party for myself which I again, have not done in a long time! I am trying to remind myself of all I have been through these past 6 months and if it were not for the missing hair, I would think I could still fool most people that I am not fighting for my life. I will get back my fighting attitude and continue my goal which is to continue week after week, month after month and year after year, to walk into Dr. Hantel and Dr. Bethke's office and have them shake their head at me that I am still around. I know the odds are not in my favor and that really sucks a lot, but no one knows my fate and that is what I have to remind myself of every minute, day, week, month or year. However many times that I need to.
So I woke up this morning and cried at first, then I got up and decided I have to live like I was living before seeing Dr. Hantel yesterday. It is his job to inform and educate me to the best of his ability, but it is my job to live my life. So I'm not back on track, but getting there!
My mom and dad are driving in from NC. Please pray for them. They will spend today through Christmas Eve with their mothers and then drive up to our place after Midnight mass with my Grandma Freeland on Christmas Eve. Jessica and her family fly in on the evening of Christmas Eve too. Please pray for their safe arrival and an uneventful flight for her and Eric since traveling with 3 kids does not sound too appealing.
Please continue to pray for my family. They are what keep me going, but I know they struggle just as much as I do. I need extra prayers for myself for the continued healing, emotional stability and for me to just trust that my body will do what it is supposed to do for once and keep the stupid cancer far away!!
Merry Christmas to all and Happy New Year! Since the world did not end (I have say I didn't want it to end, but I was hoping for a do-over or something where all evil disappeared which included cancer, diseases and bad people) Here is to a cancer, disease and evil free 2013!!
Lots of Love,
Amber
Thursday, December 13, 2012
A week Has Passed
A week ago today at this time I was under anesthesia and had no idea what was going on. My family sat in the waiting room awaiting to hear from the surgeons that everything went well. It did, our prayers were answered!! This week my prayers have also been answered because each day I feel a little better than the day before. My last request for prayers was for my pathology reports to not be too scary and those were answered (in my opinion) as well. Thank you to everyone for the prayers and continued support!
I will start with my pathology because that I know is what everyone has been waiting for. Dr. Bethke called last night around 5:30. So nerve wracking to wait around for a phone call that then lasts a matter of seconds! He explained to me that the tumor in its largest area ended up measuring 5.5 cm. He said they took 19 lymph nodes and of those, 9 tested positive for cancer. So I am staged at 3A. At first I was discouraged, so if you are by reading this, go ahead and be discouraged, but read on....There is no time to be down after you put it all in perspective.
First I went to Justin's Christmas concert and didn't think much more about things, then when I came home, I did do some research. Of course I was originally thinking, I was a 3 before this and after 16 rounds of chemo, you have got to be kidding me! I won't lie, this is still a thought, but the tumor shrunk by half and 9 nodes out of 19.....It could have been more and maybe they took the only 9 that were cancerous. I also am a 3A, not a 3B, 3C or stage 4. So no better, but no worse.
As far as the staging goes, here is the best I can do: 3A means it is bigger than 5 cm and has spread to lymph nodes in the arm pit. 3B, it doesn't matter the size of the tumor, but it has spread to the chest muscles and also the skin. Stage 3C, spread in the arm pit lymph nodes and behind the breastbone, neck and clavicle. Stage 4, it has moved to other organs of the body. So take the information and panic for a second, but then come back with a positive attitude and outlook because that is what I am choosing to do!
The next steps will be determined by my Oncologist, Dr. Hantel. According to Dr. Bethke, he does not believe this will involve anymore chemo because I am probably maxed out on the current treatments. He thinks my next step will still be radiation. Radiation should work just as aggressively as chemo to ensure all of those stupid cancer cells are gone if any were missed. So I have called Dr. Hantel and left a message to set up an appointment. I know nothing can be done until I am healed so I am really not going to rush around and try to get in there before the holidays because even if he tells me the plan, I can not start until everyone is okay with my recovery.
As far as how I am feeling, I can tell I am getting stronger every day. I have been able to shower and dress myself which is huge considering on Saturday, I could not do either. I am also able to reach further. I still can not lift and I learned last night, I still can not reach over my head. I tried to waive to Justin on stage last night and realized I could not do it. Last night was the a test for me, we left to go to Justin's Christmas concert. I took some pain medicine before we went, but I felt pretty good there. I was concerned I was going to get there and not be able to handle the pain, but I think I did fairly well. It must of wiped me out though because last night was my best nights sleep that I have had since the first night home from the hospital.
My week of rest is coming to an end! Starting tomorrow, I have a busy schedule again and I am not so sure I am liking it! It will be busy and will take a lot out of me, but I'm hoping as the days go on, my healing will continue and they will become easier and easier. Tomorrow is a follow up with the plastic surgeon. I am hoping he removes these drains! They are so annoying and my out-put has been minimal, so I am hoping they will just remove them! If they don't remove all 4, at least 2 but really, give me all 4 please! Next Tuesday I have a follow up with the surgeon, Wednesday an appointment with the radiation Doctor and let's just throw one more in there, Ryan has his 9 month on Thursday. So even if Dr. Hantel wants his time with me, I am not quite sure next week is good for me! I am one busy lady!
Things are going well though. Justin has been staying home from daycare since my parents have been here. Someone just drives him to and from Kindergarten. Tomorrow he will go back to his normal routine, which I will secretly say, as sad as I am to see my parents leave, it is time for him to get back to daycare / routine. Ryan is curious as ever and is in to everything. The one good thing about me being out of commission since he was 3 months, he will go to anyone. So with me not being able to lift him has not been a big problem. But really he prefers to just roam rather than being held by anyone! Don went back to work on Monday since I had plenty of help around the house. My parents will leave tomorrow morning. Whitney will still be here to help with Ryan and with me.
I am off now to do something, I am not sure what, but something! This sitting around is so hard for me, but I will admit I am kind of enjoying the daily naps and just being able to breath some! The stupid tumor is gone and even though I did not have a clear pathology, I can breath more than I could before knowing my enemy was still inside of me!
Thank you for the continued prayers and support!
Amber
I will start with my pathology because that I know is what everyone has been waiting for. Dr. Bethke called last night around 5:30. So nerve wracking to wait around for a phone call that then lasts a matter of seconds! He explained to me that the tumor in its largest area ended up measuring 5.5 cm. He said they took 19 lymph nodes and of those, 9 tested positive for cancer. So I am staged at 3A. At first I was discouraged, so if you are by reading this, go ahead and be discouraged, but read on....There is no time to be down after you put it all in perspective.
First I went to Justin's Christmas concert and didn't think much more about things, then when I came home, I did do some research. Of course I was originally thinking, I was a 3 before this and after 16 rounds of chemo, you have got to be kidding me! I won't lie, this is still a thought, but the tumor shrunk by half and 9 nodes out of 19.....It could have been more and maybe they took the only 9 that were cancerous. I also am a 3A, not a 3B, 3C or stage 4. So no better, but no worse.
As far as the staging goes, here is the best I can do: 3A means it is bigger than 5 cm and has spread to lymph nodes in the arm pit. 3B, it doesn't matter the size of the tumor, but it has spread to the chest muscles and also the skin. Stage 3C, spread in the arm pit lymph nodes and behind the breastbone, neck and clavicle. Stage 4, it has moved to other organs of the body. So take the information and panic for a second, but then come back with a positive attitude and outlook because that is what I am choosing to do!
The next steps will be determined by my Oncologist, Dr. Hantel. According to Dr. Bethke, he does not believe this will involve anymore chemo because I am probably maxed out on the current treatments. He thinks my next step will still be radiation. Radiation should work just as aggressively as chemo to ensure all of those stupid cancer cells are gone if any were missed. So I have called Dr. Hantel and left a message to set up an appointment. I know nothing can be done until I am healed so I am really not going to rush around and try to get in there before the holidays because even if he tells me the plan, I can not start until everyone is okay with my recovery.
As far as how I am feeling, I can tell I am getting stronger every day. I have been able to shower and dress myself which is huge considering on Saturday, I could not do either. I am also able to reach further. I still can not lift and I learned last night, I still can not reach over my head. I tried to waive to Justin on stage last night and realized I could not do it. Last night was the a test for me, we left to go to Justin's Christmas concert. I took some pain medicine before we went, but I felt pretty good there. I was concerned I was going to get there and not be able to handle the pain, but I think I did fairly well. It must of wiped me out though because last night was my best nights sleep that I have had since the first night home from the hospital.
My week of rest is coming to an end! Starting tomorrow, I have a busy schedule again and I am not so sure I am liking it! It will be busy and will take a lot out of me, but I'm hoping as the days go on, my healing will continue and they will become easier and easier. Tomorrow is a follow up with the plastic surgeon. I am hoping he removes these drains! They are so annoying and my out-put has been minimal, so I am hoping they will just remove them! If they don't remove all 4, at least 2 but really, give me all 4 please! Next Tuesday I have a follow up with the surgeon, Wednesday an appointment with the radiation Doctor and let's just throw one more in there, Ryan has his 9 month on Thursday. So even if Dr. Hantel wants his time with me, I am not quite sure next week is good for me! I am one busy lady!
Things are going well though. Justin has been staying home from daycare since my parents have been here. Someone just drives him to and from Kindergarten. Tomorrow he will go back to his normal routine, which I will secretly say, as sad as I am to see my parents leave, it is time for him to get back to daycare / routine. Ryan is curious as ever and is in to everything. The one good thing about me being out of commission since he was 3 months, he will go to anyone. So with me not being able to lift him has not been a big problem. But really he prefers to just roam rather than being held by anyone! Don went back to work on Monday since I had plenty of help around the house. My parents will leave tomorrow morning. Whitney will still be here to help with Ryan and with me.
I am off now to do something, I am not sure what, but something! This sitting around is so hard for me, but I will admit I am kind of enjoying the daily naps and just being able to breath some! The stupid tumor is gone and even though I did not have a clear pathology, I can breath more than I could before knowing my enemy was still inside of me!
Thank you for the continued prayers and support!
Amber
Sunday, December 9, 2012
Day 3
Not a lot to report. Today was a little better than yesterday. This weather is not helping. It is rainy here which made me just want to nap all day. I did take an extra nap today, but made myself get up to play a family game of "Life". Justin won. Little does he know, life isn't about the money you make.....It was fun!
Yesterday I had my first shower. This was more difficult than I would have originally expected. I think it is hard to imagine just how little you can do when you can't raise your arms up over your head. Don had to help more than I thought he would have to. We also removed my pain pump. I thought I was going to pass out. I don't have much feeling in my chest area, but you could tell he was removing something and I could picture it, so it was making me sick. I'm glad that part is over with. I wasn't really utilizing the pain pump on my own so it was time to go.
Yesterday I also took my first look....They have warned me that this first look should not be taken serious. I look like I was used as a punching bag, I'm bruised everywhere I look. I will say it took my breath away. I know over time, this will get easier to look at, but it is overwhelming at this time so I am going to boycott showers until it is time to get my implants. Just kidding, but I do hope as the pain goes away and I continue to heal, I can bear looking at myself in the mirror again. I do not have any feeling right now and I am not really sure how much will return. It is just weird and I will leave it at that right now. I'm kind of focusing on the healing part and trying not to think much more about my appearance as I still have a ways to go with the cosmetic part.
Last night I had a difficult time sleeping. I have been sleeping in silky pajamas, which help me to get in and out of bed on my own in the middle of the night. They slip right off of the sheets. I have tons of pillows propping me up too because it also makes it easier to get in and out of bed and also it seems like when I lay myself all the way down, the skin feels tighter and that hurts some. I have been taking 2 pain pills at bed time and last night I was itching like crazy. I am blaming this on the pain medication so starting tonight, I will only take 1 and see how I can do. During one of my midnight scratches, I was wiggling to sit up and realized not only do I not have full use of my arm and chest muscles, but I also never really regained use of my stomach muscles. Being pregnant and then having a c-section, 9 months later, most are probably fully recovered, but I started chemo when Ryan was only 3 months so I was nowhere near being fully healed from that. So what works is I use my fists and plant them into my bed and take a deep breath to get to the sitting position and then I just wiggle until I am at the edge of the bed. It probably looks hilarious, but it is so not funny, but I'm smiling thinking about how I do this right now because it has to be a funny sight! So this should be toning up my stomach muscles no problem!
I still have not focused too much on the next steps. I have to be honest, there are times that I forget I'm recovering from a surgery for cancer. I am just so focused on healing that it is easy to block out that there is still some unknown questions that we will get answers to this week. I just know that no matter what, I have to continue on so just tell me what I have to do and I'll do it!
Tomorrow I am hoping to get out of the house. I am getting a little stir crazy. Probably just to take Justin (with more help) to get a haircut and maybe to get some more camisoles that hold drains. I will have drains for about another week and I have found one I really like and one I really hate so I need another one. So we will call around to see if any of the wellness centers around here can refer me to a place and if not, I will just order another one on-line.
That is all for tonight! Hopefully tonight will be a better nights sleep for me!
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