My new oncologist

I have a new oncologist. Dr. Bruns was fine, but I never connected with him that I have with my other doctors and I wanted to have that. So after the conference in February, I started looking around. I used the names that I saw at the conference and looked people up. The cancer center that was featured in the conference was on the west side of Portland so I knew that was out. I was getting frustrated. My oncologist office is in Vancouver and I searched out the one in Portland. I wanted to get someone who specialized in breast cancer and I was getting discouraged because I didn't see anyone who fit what I wanted. I didn't want someone who did general cancer or if they did breast cancer, I wanted someone who could help me as a younger woman with breast cancer instead of an older person in their 50s or older which is the norm for most breast cancer patients.

HALLELUJAH!!!! I found someone!!! She is in the sister office of Norwest Cancer Specialists in Portland. Her name is Dr. Devon Webster and she fits exactly what I want. Her specialties include: Breast cancer treatment, including metastatic breast cancer, male breast cancer, and breast cancer in pregnant or very young women; Post-treatment survivorship planning; Clinical trials of biologic therapies; Patient education and empowerment.

I felt guilty wanting to switch doctors. But I never felt completely 100% satisfied in Dr Bruns bedside manner towards me. He was very knowledgeable but I researched a lot before I came in and he never pushed to do the most for me in my situation. I was never looking to have lots of surgeries or medications or tests or anything, but he didn't seem to feel the urgency or feel how different I felt my case was. There just aren't many younger women with breast cancer and I felt like I was lumped with everyone else who had it and not treated differently because I was younger. My needs are different than someone older and it never was acted on.

So I'm thinking there's no way I'll get in to see her. She seems like she would be a very popular doctor. I call and I'm not supposed to see my oncologist until June. But if I wanted, they said I could come in much sooner, say within 2 weeks. I immediately said yes. And for my first appointment, she gave me an hour appointment! An hour! That was cool. Also, another nice thing is that since Dr Webster is still with NW Cancer Specialists like my other one, all my paperwork and patient history is in their computer system and so I don't have to go through and fill anything out all over again. I love that!

I go to see her and she walks in and I feel immediately at ease. I tell her why I was there and why I changed. She takes charge and asks me lots of questions and we talk and take up the entire hour appointment. She examined me and seemed okay with everything. I was concerned because I had gained weight recently and it wasn't like me and I didn't know if it was due to any meds or if I had just eaten tons over the winter. She wanted me to have blood work down right away to check my Vitamin D levels and my thyroid to make sure things were okay on that level. I have troubles with vaginal atrophy and she is trying to get me set up with a medication that would help make the horrid pain go away or lessen a lot of it. The medication is expensive and she is trying to get help from the pharmaceutical company to let me have it for a cheaper amount.

Another concern I had, was that I could feel that my lymphedema was not doing so well. She set me up to visit a physical therapist near my home instead of across town like the last attempt had been. We had a wicked storm in December, right around the time I was going to start seeing the first pt at Good Samaritan hospital in SW Portland and it was such a hassle and other stuff going on that I cancelled my appointments. So she set me up with a nice lady less than a mile from my home across from Adventist hospital. I was nervous to go but the exercises the lady has my doing seem fairly simple and I just have to remember to do them. I forget all the time.

Also, Dr. Webster wanted me to have genetic testing done for the BRCA gene. All it took was a simple blood draw and within a month or so, I would have results. Well, I had this done this month and I will get the results on Monday. I have absolutely no idea is I have this gene or not, it's something that Dr. Bruns never really pushed. I'm glad Dr. Webster did. I'd rather know than not know if I'm at risk for something instead of hiding my head in the sand.

Holy cow it's been a long time since I've been on here. I would click on the link, get here, and then decide it could wait until another time to update. It was nice for a little while to put cancer in the background.

But I have some things to write down or I know I will forget them. Tonight is the 3 year anniversary of my mastectomy. It blew my mind to realize this. It's been 3 years since this all started. Wow. I don't think I can look back with fondness and remember, but I can look back and appreciate all that I've been through and how I have changed.

But to update first.

At the end of February, I went to a Susan G Komen event in Portland. I would have loved going to the YSC conference in Dallas, but I can't get to go on a scholarship 3 years in a row, so I stayed home. I tried not to read any threads on the YSC bb about it because I was so upset and sad that I wouldn't see all my friends. I found out about the event in Portland and immediately was interested. There were classes I wanted to learn more about and even better, they had scholarships. I signed up early and was able to get one which meant I didn't have to pay to get in and I didn't have to pay for any of the classes. The lunch was awesome. It was very fancy though they jammed 10 of us to a table when 8 would have been comfortable. It was very common to hear conversations start with, "So what's your status?" and not anyone bat an eye when someone walked by with a wig or if someone whipped it off to show a bald head.

I'm trying to ward off a panic attack, so I thought I would write a blog entry. I realized that I don't write very much on here anymore. I kind of miss it. But it's good in a way. This blog is strictly for breast cancer ranting and raving and whining. If I don't have many posts, it's because I'm not having much to do with it. Yay!!

I'm finally getting over a monster sinus ugly cold from hell. This is so dumb, but I can handle the big stuff like getting menopause, needing to have a procedure done, etc. No big deal! But I get a cold and I feel like the world's biggest wuss. lol I probably had a very common no biggie headcold, but it felt like I wanted to die. I thought my sinuses would explode one night and I coughed so hard I think I pulled a muscle in my back. How frigging embarrassing!! Can you imagine going to the doctor and trying to explain why your back hurts? "Uh, I coughed". That's not going to go over well. It's mostly over thank goodness.

I don't get too looney unless I don't take my meds one day or so. Than I get major mood swings. I would so enjoy not having to take too many medicines. Currently I take three and I'd like to take less. When it's time for my next regular doctor visit, I'm going to see about cutting one particular one out.

Another thing I've noticed is this winter I've gained weight. I don't know how much but I can definitely tell. It depresses me and scares me at the same time. For a lot of reasons. I was supposed to go to a physical therapist for lymphedema but I said no. I've had enough of doctors. But I can see it in my hand, especially the finger that started all this worry. Gaining weight plus lymphedema is not a good things. I literally have to get off my fat ass and start doing something about it. I struggle with self esteem issues and believing I can make a change is hard because I don't believe in myself.

I feel guilty and selfish too. Most days I'm good. I can handle things fine. It's the one day out of the week that I write on here and get the bad stuff out so I can be happy and okay the other 6 days a week.

I had another set of migraines this month. I dropped Mom off at the airport and started to drive home and got a migraine or the beginnings of one. I got another one a couple of days later. After that got better, I started down the path to this rotten nasty head cold I'm barely getting over.

Okay, panic attack not going away. Time to haul out the Ativan.

I'm so excited, I have to put this somewhere...

My wonderful friend is a photographer. She took this picture and with her magical wonderful photographer ways, she can put letters on there to appear that someone has carved their initials into the wood. Jason and I have struggled for a long time and lately things have been so good between us. I just love him and how hard he works. So I asked my friend if she could do our initials in the picture. Yay!!! She did it and I was so excited to get the picture that I immediately went out and had it made into copies. I have a little one and then an 8x10 that I had matted and framed. Not the best frame, but it still looks really good. A nice black frame with offwhite matting. We are dirt poor, but I was able to do this for him. I'm so excited to give it to him. Thank you Sunny for your beautiful picture and the work you put into it.

Lit a candle last night

A beautiful young mom on my bc board was close to dying last night. As a group on the board, we lit candles for her. It felt so good to know that no matter where we were last night, we all did it as close to the same time as possible. I felt like I was apart of something powerful and special. Mandy was one of the most beautiful women I've seen on that board. Like Miss America beautiful. I didn't know until a couple of days ago that things had gotten so bad. We knew it was close yesterday, so we all lit candles around the same time and most of us kept them lit throughout the evening. We found out this morning that Mandy had passed away sometime in the early morning. It hurts all over again. But I'm glad we did the candles because maybe in my mind it helped me be able to do SOMETHING. You feel so completely helpless and by doing this, I hope in some corner of her spirit she could feel that we were all wishing her peace and that the pain would end. I really hope she knew in some part of her being.

Finally said no to a doctor

I've always done what my doctors have told me to do. If I need a test done, I do it. If I need a procedure done, I make sure it happens. I've never said no, I'm not doing that, too bad. Well, I finally did it. I went and saw the physical therapist and was set up to go see her once the insurance approved it and my oncologist signed off on it. I had the appointment arranged and then we were hit with a monster snow storm here which closed down much of the city. It made me have seconds thoughts. I eventually just called the office up and told them I wasn't going to reschedule and I'm not coming back. I felt guilty, but I'd had enough.

For all I know, I don't have lymphedema in my side, I could just be extra fat over there. I was told to get some good jogging bras that will support me instead of my fat falling over the top of my bra and having the bottom of it cutting into my side. There's a good place here in Portland that measures and helps you find the correct mastectomy bras and get new fake boobs. I'm hoping my insurance will cover most of it, because ideally, I'd like to get 3-4 new bras, a prosthetic for swimming and a new one just for every day use. Realistically, I know I have to get one bra and anything else will be extra. But I can dream, right?

Struggling with weight

I can't go one day without my meds or I get really messed up. I didn't take all my pills on Friday night and yesterday my emotions were a mess. It doesn't help that I was already messed up, it just made it worse. It's very frustrating to go to an outlet mall hoping to get jeans and you go to a store and the biggest pair they have is in a size 12. I'm definitely NOT at size 12 and haven't been for a very long time. I feel like I'm at my biggest weight ever and I feel terrible about it. Add to the fact that the physical therapist I saw says I have lymphedema in my side and wanted to do therapy with it, plus the fact that any bras I have to buy are very expensive, it makes for loads of fun. It's not just a matter of going and buying a cheap $10 Walmart bra. It has to be specially made because I'm fat, I have no boob, and I have problems on my side. It all gets complicated with breast cancer.

My body hurts so much. I am 35 but feel like I have an 80 year old body. Everything hurts, body aches, etc. My hotflashes have returned and are as lovely as ever. As an added bonus now for my dh, intercourse is very very painful. Like losing your virginity each and every time. I don't like doing it, no sex drive from all the meds, and now when I do want to, it hurts like a bitch. I see pictures and see how big I am and I hate myself even more. I am running out of unemployment benefits, I'm bigger than ever, zero self esteem, and it's been almost impossible to find a job with my health problems. I feel utterly useless. I'm sitting here on a Sunday morning, too embarrassed to go to church. I don't know how to even start to get better.