Finally moving forward (again)

I haven't been very good at staying up-to-date on my blog. I have found it is actually harder than I though for me to write about all of this. If you know me, you know i'm not one to share a lot of personal thought and feelings freely with people, so blogging about having cancer and what we are going through has not been easy, but maybe a little therapeutic. I have found that I think I am handling things pretty well and then I blog about them and the emotions come right back to the surface. I am not a writer, writing has never been my strong suit or fun for me, so thanks for bearing with me and reading my poorly written blog. Anyway, things are moving forward again. Last week we met with our new plastic surgeon at Huntsman, on the day I was supposed to originally have surgery, so it was a little depressing. First we met with the resident who seemed very nice, but she mentioned that there was a high probability I might need radiation. WHAT??? Needless to say that freaked both Ryan and I out. The plastic surgeon was not very talkative, seemed fine enough but didn't really explain or put our fears at ease about the radiation. We have talked to several doctors, we knew that if they found more cancer or it looked like it was spreading or what not I may need radiation, but all our other doctors felt it was unlikely I would need radiation, especially since I had very early stage DCIS which has not spread. So we were floored when the resident mentioned several times that radiation was a possibility and that she had told people before they wouldn't need radiation and then they did end up needing it. I totally understand covering your bases, but I wondered if they had even looked at my images and history. After that appointment we actually signed up for secondary insurance through the reserves so that if we didn't like the general surgeon we could go back to IHC and have some of our out of pocket covered by the secondary insurance. Which still wasn't ideal because we don't really know what our insurance would pay for an out of network surgery and have no idea what the secondary would cover. We were hoping and praying the general surgeon would calm our fears. Yesterday (wednesday) we met with the general surgeon at Huntsman. It started out a little shaky when they wanted to me come in 30-60 min early to enter all my information because they got a new charting system and the receptionist wasn't exactly friendly, and ended up saying half and hour early should be fine. So we showed up half hour early and the lady at the front desk said I needed a mammogram. Ryan was ready to leave right there. I told her I didn't need a mammogram I had already had several mammograms and I am already diagnosed with breast cancer. My medical records had been sent over and they could read my previous mammogram. She went back to talk to someone and didn't say anything more about it. I told Ryan we were here and just going to see the Dr. So we waited. Again we saw the resident first who was very nice and listened to our fears about radiation and said she would let Dr. Neumayer know. Dr. Neumayer came in and talked to us, she was very nice. Even said she didn't think that I would need radiation and that they had one of my early MRI's and could see that the spot in the left breast that was concerning in my newest MRI hadn't changed so they didn't need to do sentinel lymph nodes on the left side. That was relieving. I was afraid that because we were at a cancer hospital they were going to be extreme and take more than they needed and radiate "just to be safe". She was very calming. We talked about incision sites and total skin sparing. She told us she wouldn't be offended if we went back to IHC (she actually trained all the surgeons we had seen at IHC!). But we felt comfortable and confident enough with her that we are staying at Huntsman and we scheduled surgery for June 2. I feel so relieved! I am glad we don't have to wait another month for surgery, that we can get it done early so I can be recovered for Leslie's wedding. Relieved that we found good doctors. Relieved that it will be covered by our insurance and now we also have secondary insurance. I am so blessed to have Ryan by my side through all of this, he has truly been a strength to me. I am blessed to have such wonderful family who love and support us! My mother who understands what I am going through and listens to me and still loves me, my mother-in-law who sends me beautiful flowers to brighten my day just when I need it. A wonderful sister-in-law who has set up a Facebook page and fundraising for us. We have so many people who care and are praying for us. We couldn't do it without all of you! Thank you so very much for your continued support. I have received messages on Facebook from people asking what they can do for us, and just letting us know we are in their prayers. I cannot adequately express how much this means to us, and I thank you for wanting to help. Honesty right now we are just getting things in order, I am still healthy and working. Ryan will be able to take some time off work to be home with me after surgery, so I don't know yet what we will need. But thank you all for offering. I will do my best to ask for help when we do need it. For now your prayers and support and so greatly appreciated!

Frustrated

I have been meaning to post for awhile, but I haven't been able to bring myself to actually do it. Every time I think about it I get so frustrated. Things were going great (considering the circumstances). Dr. Reading was great she was coordinating with Dr. Ferguson for a surgery date. I was happy with my Doctors and we found out surgery was scheduled for May 6. I liked that, I was ready to get things done. I found out on Monday the 21st of April about surgery, we also got some insurance papers in the mail. Turns out UPS updated their contracts and switched insurance providers. We knew the contract was coming up so when we found out about the cancer in March Ryan tried calling to see what was going on, he told them about the cancer and tried to explain that we didn't want to be in the middle of everything and find out our insurance had switched. Basically he got the run around and no one could give him any answers, Until April 21 when we found out that as of April 1st our insurance had switched! Instead of IHC being a provider the U of U was the big provider, IHC is not even contracted, which is where ALL my doctors are! I as so upset. The stupid third party insurance ladies we get to talk to are rude and not helpful at all. Basically they can recite what the insurance book says, which I already read. They told me I "could go anywhere I wanted" DUH. Of course I can go anywhere I want, it doesn't mean they will pay for it! I don't think she understands how insurance works. "We will pay 100% of reasonable and customary" She told me, which doesn't help because I would be responsible for the difference! I can't even imagine what the difference would be on that surgery and reconstruction! I wanted to reach through the phone and punch her in the face! I also hoped all the houses of the high ups and UPS would burn! I am so happy their wallets are getting bigger because they can screw their employees by getting a ghetto insurance plan and letting them know about it in the middle of the month!! You can probably tell I am still a little upset about it. It is not that I can't go see good doctors still. We can now go to the Huntsman Cancer Institute, which is good. But it is so frustrating when you have been referred to good doctors, feel comfortable with them and have surgery scheduled in 2 weeks. Now I have an appointment with a plastic surgeon at Huntsman on the day I was supposed to be having surgery, and I can't even get in to see the surgeon until the 14th of May, which means surgery won't be until the end of May (earliest) to beginning of June! We are staring over. I am sorry this is a depressing post.I just can't even tell you how upset, mad, and defeated I have felt. I have been trying to have a positive attitude about this, not easy, people tell me what a good attitude I have, and I feel like I am lying to everyone! I am feeling a little better. I know Huntsman will be a good place to be, I am nervous about meeting new doctors and waiting another month for surgery. Waiting weighs on you, it consumes your thoughts, it steals my days off, it adds tension. My sisters wedding is the end of June. I want to throw her a bridal shower, but when? What if I schedule it and then end up having surgery? If I wait I will still be recovering. I was hoping to feel pretty good at her wedding, I don't want to have drains coming out my sides! I know it is a silly thing to worry about but I do. She is my only sister and I want to be able to do all the things a sister should do. I know she won't be mad and I know she understands, but I don't know if I do. So thats the latest drama in my life. Technically nothing is really happening. Just waiting. Sorry this is such a depressing post. Maybe I will post a happy story next time. Thank you all again for your love and support, you really do make a difference and help me get through the rough days!

Busy week

Its been a busy week! Monday and Tuesday were my last 2 days of school, I am finally done, even though graduation isn't until the 25. I am so grateful everything happened when it did and I was able to finish my last semester. I can't imagine what I would do if I was this close and wasn't able to finish. Tender mercy. Monday during class, well my teacher left a 8:30 and our second class wasn't until 12...my surgeon called twice. The first time she was wondering what I had decided and we talked about options. The second phone call was the stressful one. She wanted me to get an ultrasound. If you remember my MRI showed spots in both breasts. When they do the right mastectomy they will take the sentinel nodes to make sure no cancer has spread, we had talked about that at the clinic. So she wanted to me get an ultrasound of the left breast to check out the concerning spot on that side to see what we needed to do. So then I got the ultrasound scheduled for Thursday. Just thinking about all that and school and work was very overwhelming. Not to mention the surgeon who called is the surgeon we aren't thrilled to work with, but we hadn't had the appointment with the new surgeon yet, we did Thursday afternoon. 8:30 am, too early for me, I went and had a breast ultrasound. I think I was stressed because it seems like every time I go in for a procedure they find some other spot they want to check out. The though of having more cancer spots is really scary. Because I don't want to deal with waiting for the next spot to show up, which inevitable it will, I decided to do the double mastectomy. Back to the ultrasound. The ultrasound tech could not find the spots they found in the MRI in either breast so the radiologist came in and tried and he couldn't find them either. Really there was just one spot on the left side that was really concerning to them. If they had been able to see the spot they would have biopsied it, since they couldn't he recommended talking to my doctor to see what we should do. Either not worry about it since I am doing a mastectomy, or do a MRI guided biopsy, that sounded terrible. If you have ever had a MRI you know how uncomfortable they are, now imagine one lying on your stomach while they do a biopsy! Only 1 1/2-2 hours! I really didn't want to do that. Later Thursday afternoon we had an appointment with a new surgeon. She was wonderful!! I was happy and Ryan was happy! She answered all our questions, she was nice and could talk to us. So relieving, I felt like a weight had been lifted off my shoulders. She said I didn't need to the the biopsy, we would just do the mastectomy and take the sentinel nodes on both sides. I am fine with that. So after a few stressful days worrying why they all of the sudden wanted me to get an ultrasound and biopsy and wondering if there was something they weren't telling me, I finally felt relieved. The decision has been made, I feel comfortable and confident with both my surgeon and plastic surgeon, considering the circumstances I am happy. So there it is. I am getting a double mastectomy at 29. Even though I feel like it is the right decision it is scary! Now we are just waiting for the surgeon and plastic surgeon to coordinate their schedules and let me know when the big day is. Sorry that is a lot of explaining. But that is what is going on in my crazy life! So I was thinking with all these doctors appointments and a hospital stay coming up maybe I should get my own hospital gown, one size does not fit all!

Clinic

Thursday Ryan and I went to a multidisciplinary clinic at the Cancer Center at IMC. Apparently on Thursday mornings a big group of different doctors get together and talk about different cases, like mine, then they meet with the selected patient.We met with a surgeon first, then a radiation oncologist, then the medical oncologist. After the doctors we met with a long list of support people like a genetic counselor, 2 different social workers, a dietician, each came in individually and talked to us for 15-30 minutes...it was a long but good day. We didn't really learn anything new. Basically the medical oncologist said since my cancer is so early and we don't need to do chemo and because we are trying to have kids I won't be on tamoxifen, he didn't have anything for me. Every one agrees that mastectomy is still recommended. If we only do a right mastectomy I have to have an ultrasound biopsy of the spot on my left breast to make sure it isn't cancerous or anything. There is still the option (according to the radiation oncologist) that we can do a lumpectomy and radiation on the right side. But where I already have cancer on that side and a few other spots that would also need to be biopsied if we did that, I think mastectomy would be best. I thought I had decided on a double mastectomy, but after talking to all the doctors about just a right mastectomy it is something I need to think about. We have an appointment next Thursday with a different surgeon (hopefully one who will be a little more personable and easier to talk to) hopefully we will have decided then and can do some scheduling. We have to coordinate the surgeon and plastic surgeons schedules. Whatever we choose to do I hope we can do it sooner rather than later. We have been given so much good information and have so much support not only from doctors and other support staff, but also from friends and family. It has been a little hard for me to put so much information out there, but I hope it helps and everyone can know what is going on. Thanks again for your love and support! We are so blessed!

MRI

First of all let me say thank you to everyone for your thought, prayers, and kind words. Knowing you have so many people praying for you and supporting you makes a big difference. I am so blessed to have you all in my life! This week I had an MRI and got the results back. They did find a few spots on both breasts, most looked benign the radiologist said, there was on that looked suspicious though. If we do a lumpectomy then I would need to have an ultrasound and biopsy to see what the spots are. If we do a double mastectomy they will be taken care of with that I don't need to do the ultrasound and biopsy. Not exactly the news I was hoping for, but we are doing the best we can with it. We still need to talk to the doctor about it and see what they recommend with this new information. Otherwise we are still in the same boat, waiting to talk to the doctors next Thursday. Thanks again everyone, we love you and appreciate all your support!

A difficult diagnosis

I don't really know the best way to go about this. It seems awkward to call people and tell them, and I really don't want to have that conversation that many times! I am not looking for sympathy I just want to let you know what is going on. I figure at some point people are going to start hearing things and I would rather you hear it from me, so here goes... I have the BRCA2 gene mutation, I have known about it for awhile now. Because I have this gene I have a higher risk of getting breast cancer. I have been getting mammograms and breast MRI's yearly to screen for cancer. On March 7 I had my annual mammogram, I got a call a couple days later saying they found some calcifications on my mammogram and want to get a better look so I went back in for another mammogram to magnify the area. The calcifications looked suspicious so they wanted to do a biopsy. I had a biopsy on March 21. On the 25 I got a call that the calcifications were cancerous. I was diagnosed with DCIS or Ductal Carcinoma In Situ, stage 0. Which basically means that the cancer cells are contained inside the duct, they have not invaded the cell wall of the duct or the surrounding tissue or lymph nodes.I had an MRI on Monday to make sure the cancer had not spread and there was nothing in the other breast that the mammogram missed, I don't have results back, but should by the end of the week. I have met with a breast surgeon and plastic surgeon and next week I will meet with a team of doctors and then an oncologist. It has been pretty overwhelming. We are still going over options at this point. But most likely I will have a double mastectomy because of the BRCA2 gene and my risk of the cancer coming back. After the mastectomy I will have less than a 5% chance of getting breast cancer again. Like I said we are still talking to doctors about options and I don't have any surgery scheduled at this time. For those of you who are wondering, yes we have been trying to get pregnant. I started the first round of Clomid in March. Actually at the time I was diagnosed we thought I might be pregnant. I was in the middle of mammograms and biopsy and the OB called and said my progesterone level was high, which meant that "hopefully" I had ovulated and "possibly" I was pregnant. Well I'm not. Maybe it's a blessing at this point, but still disappointing. We will continue trying after surgery, I'm not sure on all the details yet. This is a lot of personal information for me to share, I don't really love throwing my personal information out there on the internet. However impersonal it may seem to some of you that this is the way I have chosen to inform you of my diagnosis, I hope you will support me and not criticize me. It is a lot to deal with and talking about it can be really hard. I am not by any means saying I don't want to talk to people I just couldn't have this conversation that many times. Please feel free to call me anytime. I have been in contact with a few other BRCA2/post mastectomy women and (at least at the moment) feel inspired to keep track of what is going on and maybe help someone else in a similar situation. One of the hardest things for me to reconcile has been that I am not sick. I feel fine, I am otherwise healthy, but I have cancer. I hope to continue to update the blog as we go along and find out more information. I probably won't post much on Facebook about this. My work has been fantastic about helping me work my schedule out around doctor appointments and so has Ryan's. We are very blessed. Thank you all for your love and support.

BMT Graduation

The days went by slow but the weeks seemed to go fast. 8 1/2 weeks later I got to go to San Antonio Texas to see Ryan graduate from Basic training! It was an awesome and hard weekend! Thursday morning started off with the Airmen's run. I stared bawling when Ryan ran by! It was SO great so see him even if he was just running past! I'm a silly girl. Then we got to wait around until 11 for the coin ceremony. Ryan's flight was the first to march out. They looked so good! I got lucky Ryan was right in the front. After some speeches and passing out coins they retired the flag and we could go "tap out" our Airmen, which means in order for them to be released someone had to hug them. I was pretty excited for this moment since I found out what it was. But when the time actually came to tap out I froze! I froze!! I couldn't believe it! I knew where Ryan was I went over to him, then I wasn't quite sure it was him so I looked at the name on his ABU "Nelson" I looked at him again it was him. He was just standing in formation looking straight ahead. I didn't know what to do! I'm not even quite sure what really happened or how it happened, but then I was hugging Ryan! So many emotions all piled into one trying to get out at the same time, apparently I can't handle it! I missed him so much and was so excited, anxious, nervous to see him and Proud of him, and also afraid to get in trouble! Thursday we had to stay on base. We got some patches sewn on his uniforms and wandered around. I just wanted to reach out and touch him to make sure he was real, but I couldn't, I think that was the hardest part.

We saw all the different planes and walked around the "BX" their version of a store or mall, really not very much is on base. But was just nice to be with him.

At 8 pm Ryan had to be back to his dorm and I got to go back to my lonely hotel room! I was pretty exhausted!I didn't get to my hotel wednesday night until 1am and was up at 4 to get ready and be at base by 6! The line to get onto base was long and we had an orientation at 7:15! Nights were the hardest, knowing Ryan was so close but I couldn't see him. I pretty much cried every night. Cried because I was happy I got to see Ryan and got to see him the next day and cried because I still was alone. A really good hard weekend. Friday was the graduation parade. When he actually graduated I'm not sure. Thursday he went from being an Airmen Basic to an Airman, so I thought that was the graduation but people said it was Friday...Friday was a lot of pomp and circumstance! No offense to the Air Force. It was a little chilly and windy and we were sitting on hard bleachers. Once again we all got there plenty early so we could get a "good" seat! Basically they marched from the opposite side of the field to where they lined up. Clear out in the field, you couldn't even see who was who without binoculars, which I did have, but I didn't get any really good pictures. Then someone had to run and tell someone everyone was present and accounted for, then run back. Then other people marched out....it was a lot of marching around in the field a long way away. Finally they marched in, It took awhile, and marched passed the audience. Then they stood close by said the Airmen's creed and a few other things and we got to tap them out again. This time I knew what to do!

After all that was over we took our shuttles back over to the dorms and got a tour of where Ryan lived for 2 months. Pretty exciting. It smelled like boys. But it was all nice and organized! They were trained well to make their beds, keep their shoes lined up straight under them, and keep their drawers organized. They were very specific about how things were folded and everything.

Ryan was the bottom bunk. He loved the community showers!! After the tour of the dorms we got to leave base for the day! We didn't really do too much. Tried to stay low key and Ryan was basically exhausted so walking around in the sun didn't sound too fun to him. Lights out were supposedly at 9,but it seems like Ryan was always up later than that and they were up at 4 am. Some nights they had patrol duty for 2 hours throughout the night too. Saturday we got the whole day together! We walked around the Alamo and the River walk. We went and saw The Lucky One, ate some good food, hung out by the pool and wend to a Rampage hockey game. It was actually pretty fun! We were on the third row, right in all the action. Plus Ryan got to stay out until 11 instead of 8! I would have gone to any sporting event no matter what it was to have a little bit longer with him!

Because Ryan went to church I got to go to church with him which also ment I got to see him an hour earlier on Sunday! Like I said I will take anything! It was a strange meeting. We just had sacrament meeting, the sacrament and one speaker, fine with me! Sunday we had to stay on base all day again which ment nothing to do and nowhere to really hang out and relax so we went golfing. Well Ryan golfed and I watched and read a book! Just like at home. Because golf is a physical activity Ryan had to wear his PT clothes.

I had to return Ryan to his dorm by 6pm. It sucked!! It really really really sucked! Even writing about it now makes me cry. It was the best and worst weekend. I am so proud of Ryan! He has worked so hard. It was funny to watch him over the weekend; he stood so straight and if we were just standing in a line or something his hands were always behind his back. He called everyone sir and mam. And he looks dang good in his blues! I couldn't keep my eyes off him (we'll leave it at that!) ;) Monday morning very early Ryan got ready and left for Tech school in California. He is studying mechanics, I guess general vehicle mechanics. He is at a Naval base in Port Hueneme CA. 4 more months...sounds and feels like forever! At least I get to talk to him everyday now. That makes things so much better. It still sucks just not quite as much! I have to say Thank you to everyone who has been there for me these last few months. My family has been truly amazing. I was in my first semester of nursing school which was really busy and they came and helped me pack up my house, literally box things up because I didn't have time and move me into my Grandma's. I seriously would have died without them! And my friends, friends I've had and new friends. Sorry for all my craziness but thanks for putting up with me. Thanks for all your prayers and support for both Ryan and I. We are truly blessed! What can I say I love this man.