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.

Three doctor visits last week

Last week was busy. My dh had the week off and we filled it with doctor visits and other fun stuff. Tuesday was my visit with my oncologist. I had seen him not too long ago, but because of starting Arimidex, he wanted to check on my levels while being on this new medication. I had been having a cold and developed a dry cough so seeing a doctor was nice. He checked my lungs and said I was clear. Anyways, my blood counts were good and he actually told me my hormone stats. I hadn't known before.

He explained that they use a system of numbers from 1 to 500 to determine hormone levels. I forgot most of the explanation, but my numbers are Estrogen level 200 out of 500 and my Progesterone level is 20 out of 500. My Her2 level is 0 which is negative. So that's how I'm ER/PR+ and Her2-. I've seen a trend on my board that triple negative tumors seem to have the hardest time, so I'm grateful that I'm not.

Next doctor visit was Thursday to my gyno surgeon. Things are so painful down in my cervix that it nearly makes me cry. So I went in to make sure things were okay and not just scar tissue or something else. Turns out I have a dermatitis problem, yeast infection, and yes, extremely dry tissue inside. Great. I went home with a free sample of meds and a new prescription that I hope my oncologist will let me have since it has a bit of estrogen in it.

Then since I was still coughing like crazy, I called my regular doctor, Dr. Hughes and asked her nurse what I could take since I had tried everything to make the cough stop. They had me come in and I was able to actually see my favorite doctor. She said my lungs were no longer clear like my oncologist had said and had crap in them. lol She gave me a presciption for a Zpack and inhalers. They haven't helped my cough at all, but I'm thinking that they are helping my lungs so that once they heal, the coughing will stop. I've had two nights cough free though the days are still not so great.

My Ah ha moment

This doesn't have anything to do with breast cancer at all, but I needed a place to do it where I could write out my thoughts and my family wouldn't tease me about being mushy. Then I would feel stupid and silly and erase it and it wouldn't be written down anywhere.

I have two children, C and L, and they are 5 and 7. We went to Ikea for dinner the other night after picking up dh from work. We sat down after being in line and got settled with the girls and their food being fixed and their drinks readied with straws. I just looked at the four of us and was just struck by how RIGHT we were as a family. That we were complete and okay and how lucky and blessed I was to have this little family. In my church we are considered rather small and I get the occaisional question of when we are having more children. We aren't. We are set and complete and for the first time, I was completely at peace with that. I always used to feel that I wasn't done even when dh had the big V and I had my medical problems. I would long to hold a baby in my arms and found it hard for awhile to be around people that were pregnant or had brand new babes in their arms.

But that moment in Ikea, I had my ah ha moment. Our family is done, we are complete, and I couldn't be happier. I am finally at peace about the size of our family. I can hold babies now and stare wistfully at them, but gladly hand them back because I'm where I should be at in my life and I'm finally content with it. It was like a huge relief to have that hit me. I'm not sure why I had that moment, but I'm so grateful for it. I needed it because I used to be so sad and that I hadn't done all I could regarding our family size and felt something was lacking.

I'm so blessed and happy to be the mom to C and L. I'm going to work on being the best mom for THEM and teach them and love them and cuddle them and make sure they know that they were meant for us and our little family. I'm going to make mistakes, but they will never not know that their momma loves them more than anything else on earth.

I lost another friend yesterday...

This disease sucks. It really does and no one gets it unless you have it, especially at the age younger women do. It strikes harder and is deadlier than when older women get it. I have a support group and these women get it. They understand the fears of not seeing your child's next birthday or Christmas or even the next week.

I lost a friend named Jenn yesterday. I have lost so many this year. People I've known and hugged and loved and laughed till I cried with and it's terrible. Last year my roommate for the first conference I went to passed away. I was able to email a few times with her mom and I had to swallow my hurt for the two younger girls she left behind. Then this year it just went all to hell. I lost Cathy, Melinda, Shabby, Courtney, Jami, my dear dear friend Danica, and now Jenn. I miss them all so much. It will be their family's first Christmas without these wonderful women. God be with their families, I know they will need it.

Rambling on...

Pity post coming. Shocked, right? lol

I feel out of sorts. I'm not sure where I belong if I do at all. Do I really belong with the group of women I interact with online everyday or am I just watching them? What do I have to offer? I have a jumble of thoughts going on in my head, snatches of feelings here and there. Am I happy about depression meds that try to keep me on an even keel or do I want to really feel emotions instead of nothingness? I don't care about a lot of things or sometimes I care too much about the wrong things.

I want to get started on Christmas so badly! I want to revel in the season and everything it has to offer. On the other hand, I want it to pass me by without acknowledging it because it hurts so damn much. I want to feel so much but the person I want to share it most with doesn't seem to care at all. I don't know if they really understand me or they don't want to or they don't care.

Muscle spasms

Okay, so I went to the regular doctor's office to get my back checked out. I hadn't taken anything all day because nothing seemed to be working and honestly, if the doctor prescribed something, I didn't want to have to wait to take anything because I had used something earlier. I get to see the nurse practitioner, Morgan Powell. She was a great lady. Anyways, she listens to me, asks questions, and has me do a few things so she can determine my range of motion. She wanted to send me home with a lidocaine patch on my back to numb it up. They were out. I instead got a shot of Toradol, some free samples of Skelaxin, and a script for Vicodin. She told me since I was getting the shot, to not take any advil for 24 hours. So it sounds like an anti inflammatory drug similiar to Advil but way more powerful. I just wish I didn't have to get it in the bum. It feels a bit achey right now.

I go home with all these drugs and I'm sure dh is just rolling his eyes at me, the walking pharmacy. I honestly don't go looking for things to go wrong with me at all. It is just been a really bad year health wise for me.

My back is a problem again

Okay, first of all, I changed my blog background again. I've been wanting something that has pink ribbons on it and this is the best I could come up with. Not my favorite, but it works.

My back was slowly getting better and now it's bad again. Yesterday we had our Primary program and afterwards, I was bringing the chairs back to the Primary room. I was in a hurry and feeling...okay, so I grabbed 2 chairs under each arm and hauled them into the room. As the day progressed, my back got bad again. I woke up today and it's almost as bad as it was the last time. I'm hating life right now. I'm frustrated with being told to ice it and take advil. I want solutions, not a bandaid on the situation. So I didn't know whether to call the chiropractor or any other doctor. I called my general doctor and someone there is seeing me this afternoon at 4pm. I hope it works and they can really help me solve the problem. I'm really tired of hurting all the time. I would welcome a surgery even if it would make the pain go away.

Updates

It seems like forever since I wrote on here. My side has been bugging me a lot, the mastectomy side. It feels squishy and soft, not just regular and fat like the other side. Like there's fluid or something. It could have been partly because not all sensation is back on that side and with some nerves regenerating, I can feel most things, but it's like when you're at the dentist and you've been given novicane. You can feel it ...but you can't. Plus, my bra fits fine on the life side, but on the right side, it bunches up and spills over the side of my bra. Not normal. I finally got tired of it and on the 21st, I called the nurse at the oncologist office and told them what I was feeling. She noted it and called the doctor and they would call me later. They did and told me that the doctor wants me to come in and see him that week. That was on Tuesday. On Thursday, I went in and he examined me. He could feel a difference on my side and concluded that I had lymphedema in my side. In your arm is where you normally get it, and it's not common to get it in your side. Lucky me.

Great news there. He set me up to go see a physical therapist of sorts at Good Samaritian hospital in Portland. He said that they are very good, the best in the area. I need to count up my doctors visits after I add this person to the list. It keeps growing and growing. I was always terrified of getting lymphedema. When I was going through chemo, there was a lady there that had it so bad that her arm was useless. It was so puffed up and awful looking. I don't know how to explain this other than this way. Image a pickle and pretend it's your finger. Then put a giant Idaho potato next to it and see how different this lady's hand looked in size. Her arm was literally about 3 times the normal size. I was so scared I would end up that way. I walked out of that doctor visit and just wanted to cry. I know I've gaine a bit of weight because I've been depressed and eating was such a way to escape things. I'd treat myself to a favorite snack and instead of limiting myself, I would gorge. It's possible that it could have contributed to the lymphedema, I don't know.

Anyways, that was just the start to one of the worst weeks I've ever had. Our car that we've had since the beginning, has practically died on us after going to the mechanics twice in 7 days for two different problems. No job prospects, sucky Scentsy party, anxiety attacks, and just normal life. So I had a giant sobfest in the bathroom. The really hard, really bad crying like you used to have when you were a kid and got hurt. I hid my face in the towel so the girls wouldn't hear me and I turned on the faucet. I was so tired of being pushed to the very edge of hanging on. I just didn't have anything left in me.

I had also hurt my back the evening of the oncologist appointment. It was hurting a bit and then I picked up L to take her to bed and did something wonky to it. I went to bed and literally could not move my fat butt to turn over. To twist my body to turn over was murder. In the morning, I was hunched over and moving at all made me gasp in pain. The poor little girls were so concerned for me. How I got L to school, I'll never know. The girls held onto my hands as I walked in the community center with them, them because they always do it, me because I was afraid I'd fall over if they didn't. I managed to get home, but I couldn't even walk C to school, even though it was within sight of our home. I barely made it to the gate before I felt like I was going to die. It was some of the worst pain I've had in a very long time.

I called my inlaws in tears and they were able to pick up Lindsey for me. I took two Vicodin and planted my butt in my chair and tried not to do anything to hurt it. When my inlaws brought L home, I was walking all funny and it was just a terrible experience. I'm doing okay now, but I'm only back to about 70% on my back. It's very very frustrating.

Who am I anymore?

Do you ever feel satisfied? Do you ever feel good enough? I feel restless and unsettled. I don't feel complete. I don't feel like I'm a whole person. I don't know if it's the cancer thing or what it is. I don't want my whole life forever to revolve around cancer. But is that how everyone sees me? Oh yeah, she's the girl that got breast cancer. Am I known for anything else? I feel like I'm walking in a fog and I see glimpes of the life I want, but it's just out of reach or the fog closes it up after a little while. I'm not sure I know how to be happy anymore. No, it's not a depression thing, I think it goes beyond that. How do I explain this so that it makes sense? I feel at times like a block of wood that hasn't been shaped yet. I know I will be something incredible, but that I have to be carved first. It's like I don't have the tools to do it yet. I don't know how to get the tools or the skill to carve, but it's there! I want to become the me I want to be, but I don't know how to get there.

Feeling sick

I'm feeling cruddy today. Lots of aches and pains on my physical body. The mental cruddiness is there too. It's icky and rainy outside and I still have to go run my errands. I'm not sure what it would take to feel altogether again. It's been so long since I felt like a whole person, that I'm not sure what it feels like anymore.

We are staying in Portland, no Tuscon

I'm heartbroken, sad, and a teensy bit relieved. But I won't let myself feel that for awhile. I'm mostly sad and really really down. Jason wanted this so bad. We looked up apartments, found people to talk to that lived there that could tell me good doctors, tried to figure out moving costs, etc. We wanted this so badly because we would be a little more financially secure. No more wondering how the hell we would pay rent or afford to buy clothes for the girls for school. Jason wanted so much to be able to provide for his family as the head of the house. He was really counting on this. I'm upset that they didn't want him. They are missing out, he's wonderful and the hardest most loyal worker they'll ever meet.

But the teeny tiny part of me way in the back is so relieved not to have to deal with the hot weather. My hot flashes are still happening with the slightest bit of heat and I'd tried to keep it out of my head how it would be done there in the extreme heat. I would gladly go if they change their minds, but it doesn't look like it's meant to be.

No news from Tuscon- added news update on friend with bc

I had another attack yesterday before church. Jason wasn't around, my mom was at church, and I couldn't find anyone to talk me down from it. It wasn't too bad. Then dh gets home from his meetings and tells me that Frances Young died. She was an older lady in my ward that had breast cancer. She would take a special interest in me and always was aware of me in the ward. When I had my problems this year, she brought me over a card and a special soft robe. It was a bit small, but the fact that she was watching over me made me cry. So anyways, Jason tells me she died, (mets from breast cancer, it spread to her brain) and my attack is back. I bawl and bawl. By this time we are at church and it's Sacrament meeting. So I sit in the back row with the rough paper towels from the bathroom and tears are rolling down my face. It really sucked. I had walked in the Race this year and Frances was on my shirt in the In Celebration of side. Now it needs to be switched to the In Memory of.

I'm having troubles. I used to love to cook. I adore doing soups, baking things, trying new recipes. I would scour Taste of Home magazines looking for new things to try out. But I feel nothing now. I look at my home and I don't care. I don't care what we eat, I don't care what I wear, I don't care if I cook, I don't care. I get emotion from time to time, but everything around me just feels like nothingness. I simply don't care anymore. I want to care, but it seems way to hard to get to where I need to to put forth effort.

Edited to add- I went to my breast cancer board to check things out. Turns out another friend has died. Her name was Nika and she had me for a gift exchange last Christmas. She was so thoughtful and kind. Not loud or flashy, but a sweet kind presence. I'll miss her a lot.

That makes two just this week. (sigh)