Day 282 - Phase 4 Hormone Therapy: Tamoxifen

It's been awhile since I last posted. And that I feel is a real good thing. There wasn't anything really to post. So let me catch up.

Following my last radiation treatment, it took about a week and a half for my skin to feel better. My skin was really red and mad. It wasn't so much the skin on the breast itself, but what really hurt was where the blister had formed and then peeled. I was putting silvadene and aquafor on the blister. I was also putting it under my breast as well because that was the next area that hurt. After the first week and a half, things calmed down. My skin started to crisp up and then peel. I was peeling like a snake molting. Some of the uncomfortableness was because the skin was drying up and when I went to stretch, the skin would crack. Think of chapped lips. My skin cracked the most right under the breast. The skin on the breast itself was fine. It just peeled like having a sunburn. The skin under my arm cracked like the skin under the breast. I had a two week check up on Oct. 2 with Dr. Marquez and she said I was looking good. I now have a final check up on my skin on November 7. My skin is feeling good. It no longer feels like paper. It actually feels like healthy skin. I have been spreading Eucerin Intense Dry skin lotion on it. It absorbs really quickly and also has an exfoliant in it. It works really well.

I've been stretching my arm out every day. I was told by my physical therapist that I want to continue to do my stretches every day for a year after my radiation. I can understand why. With my skin being less elastic, it helps to stretch. Plus the radiation also damages the muscle. So my body is repairing everything. But I have great range... I didn't lose any of it.

Work continues to go smoothly. I got the shift I wanted 4a-12.30p Monday through Friday. However, since the shift bid, we have been required to work a mandatory 45 hours a week. I don't think I've ever worked just 40 hours, but to make it mandatory really sucks. Plus you have to do it when they schedule it for you. But hey, at least I have a job. And last month my team did really well, so I will get a really nice bonus. Hooray. Just in time for Christmas and the cruise. Remember, if anyone wants to go on the cruise with us, I'd love it. :)

On Friday, I met with Dr. Steven Chui. He's my new oncologist. He's nice. I like him, but he's no Dr. Luoh. I really miss him. Our appointment was at 2.30p, but we didn't get into the office until 3.40. He apparently had an emergency procedure and that's why he was running late. Oh well, it happens. I did end up getting a little nap in while waiting.

So he was very pleasant. He knows his stuff. He didn't want to insult my intelligence and said so from the beginning because he (apparently) knew that I knew my stuff. He started off talking about studies of tamoxifen. He said that five years is good, but what he's found is that having younger women on tamoxifen may fair better in the long run. He said that hormone positive cancers have a recurrence of coming back later rather than sooner. So for me, he said that studies show that the cancer would come back ten years or more. He cited an example that a woman had breast cancer and 31 years later she has a brain tumor that is estrogen positive and has the same exact characteristics as her original breast cancer. Whoa! And I just want to let you know that I am paraphrasing all the stuff he talked about because he talked A LOT. So he didn't want me to be opposed to being on tamoxifen for more than five years. We also talked about getting the ovaries taken out because I am BRCA positive. He said that while I am eager to get things taken care of... I may want to wait on that because it puts me on instant menopause. In addition, I could get adverse effects of menopause. He suggested that I wait and then he give me a shot to suppress estrogen in my body and see how I do. But then he also flipped the coin and said that since I am BRCA+ it's a little different. To me, I know that I am going to get my ovaries taken out. Whether I do it now or later, the effects are going to be the same. With the shot to suppress estrogen, that's more for the women who can elect to have it taken out.... ones who aren't genetically disposed. In any case, it's something I'll have to discuss more. We also talked about if I do get my ovaries taken out, Dr. Luoh had said that he would put me on a different drug. The drug is for post menopausal women. Dr. Chui said that that drug is far superior [then tamoxifen], but it does cause bone loss. He said that with my age and my race, I am at a higher risk of osteoperosis. Tamoxifen actually helps with bone density. However, I could go on tamoxifen and switch it out with this other drug for a series of years - back and forth. Then I could get benefits of both drugs. All I said was "sign me up." I knew the risks and the benefits. I will trust my doctor because I know that they keep up with the latest and greatest information. I knew I'd have to go on tamoxifen for a couple of years so let's start now! In another few years I can ask about new drugs or switching to another. And Dr. Chui said that they have now started a new study - 31,000 people - to see if the effects of staying on tamoxifen for more than 5 years works. The initial study, which started in the 70s was a double blind study: tamoxifen vs. placebo. That was a year long study. They found that women who took the drug fared better, so they asked them to continue on for another year and another year and so on and so forth. That's how researchers came to the conclusion that 5 years of tamoxifen was good. But as the study went longer, the base size of participants shrunk. So that's why the study isn't very conclusive after the five years. But we shall see in five years. By then there may be a totally new drug out there. Or researchers will have discovered how to repair the DNA fix. Five years is an eternity.

So, yesterday I picked up my tamoxifen prescription and I took it last night before I went to bed. Some side effects: hot flashes, tiredness (goes away), flare reaction, mood changes, nausea, vomiting, blood clots, endometrial cancer, vaginal dryness... the list goes on. Now we wait and see.

Tomorrow I have a follow up appointment with Dr. Naik. See how my boobies are healing. November 5 I have an appointment with Dr. Thakar to see if I can get the tissue expanders out and the implants in. November 7 I have my follow up with Dr. Marquez for post radiation. Then... it's wait and see.

Day 141 - Back to the beginning... sigh

It's back to the beginning. I got a call from the social worker at OHSU on Thursday delivering some bad news for oncology patients... or at least some of them. I was delivered the message that my oncologist was leaving the OHSU practice. That means Dr. Luoh is no longer my doctor! I am so bummed. Turns out he's not going far. In fact he's moving back to the Veteran's Hospital. I know that he's been "moonlighting" over there. So on Friday, I received a letter in the mail stating that Dr. Luoh was leaving effective July 1. It also states that Dr. Luoh was on "loan" to OHSU and will now be going back to the VA hospital full time. When I was talking with the social worker on the phone the previous day, she said that his nurse was in shock. I told her that while I knew his heart belonged to the VA, I was soooo happy that this didn't happen during my chemo sucky treatments. It would have devastated me to have to change doctors in mid process. I sure don't envy anyone going through chemo now and having to also change doctors. While I was supposed to pick up with him in September for hormone therapy, it's not as intense as the chemo part. The letter included a statement from the head of the department and then a letter from Dr. Luoh. His part went:

My Dear Patients:

It has been my great honor to work with you  at the Oregon Health & Science University Breast Clinic at the Center for Health and Healing. Thank you for the trust that you hae placed in me and my staff at the Knight Cancer Institute. I am a faculty member at OHSU. Few of you know that I am actually a full time Medical Oncologist at the Portland VA Medical Center. I have been offering you my care as an exchange of service between OHSU and the VA. As of July 1, 2012 my work at the outpatient breast clinic at the Center for Health and Healing will end and I will shift my full time responsibility back to the VA Medical Center.

I am grateful for the opportunities to work with you. A group of respected medical oncologists have been assembled to take over your care. They will continue the journey that you and I charted together. You are in my thoughts and I will cheer you on in your fight against breast cancer.

Makes me want to enlist and then get out so I can be a patient at the VA! Ha! It was a nice little note he put in and goes to show he's a great doct. or. So now I have to pick a new doctor. - so it's like I am starting all over again. Fun times.

Tomorrow I have some pre-op tests and I have my pre-op appointment with Dr. Thaker, the reconstructive surgeon. I can't believe in less that two weeks I'll have my surgery and then I'll be rid of this ridiculous cancer. Well, I hope so... meaning that the chemo-sucky got all the other "floating" matter circulating in my body. It's surgery time... then recovery time and then radiation time.

While I am not looking forward to the surgery, I am looking forward to it. I want to be healthy again... but I wish it didn't have to come to a surgery taking away my breasts. I'm not upset or anything... but it just sucks. But in the end I will be cancer-free and I will have bigger boobs. I was trying on some bras this morning and thinking... I won't need these anymore in less than 14 days! Ha!

Day 117 - Round 8 The End!

Round 8... the final round of chemo sucky...

There is no internet connection here at OHSU for some reason. I don't know why, so I will write and then post later. Currently I am halfway done with my last treatment! Today has been so awesome. I never dreamed it would be here so fast. But it is and I am super duper excited.

So, I went in for my bone density scan. I had to strip down to just my panties and then wear one of those fabulous hospital gowns. Then I laid on a table while the machine took x-rays of my spine and my right hip. What they are looking for is how far the x-rays penetrate my bone. My spine looked great and so did my hip. No signs of bone loss. They only looked at my right hip because if they see bone loss there, then it should be throughout my whole body.

Then it was time to head upstairs for labs and meet with Dr. Luoh. I had to go pee really bad, so I walked back into the infusion room to get a specimen cup. Jon was back there and he has several specimens in his hand. I asked him if he can print up a label. He replied, "Can't you see I'm busy?" To which I retorted, "That's why God gave you two hands!" So he printed me a label. As I was leaving to go back to the waiting room, the starter nurse, Net, saw me and said that I she was just about to find me to start my line. Oh good... I got my needle and blood draw and then went out to wait for Dr. Luoh's appointment.

Got called in and saw Dr. Luoh. It's nice being the first patient on his list. Excellent. My appointment was done in 1/2 an hour. We talked about how this past go around was. I told him that it's good and that I didn't get sick at all. He was happy with that report. He checked my breast and said that it looks like the tumor is getting softer. We went over the bone density and the clotting test. He said that I am already ahead of the curve when it comes to the clotting issue... I guess meaning that I don't have any mutations, so we don't have to worry about blood clots. We talked about the next step and when I will be seeing him again. Looks like I will be seeing him in September. I said, oh yea, a summer vacation! We talked a little about surgery and lymph nodes. I asked him how long does chemo sucky stay in your body. He said that the medicine is in your body for about a week after. Then I asked him if I could get a picture with him since he took pictures of me at the beginning of treatment. So here is the result:

Me and Dr. Shiuh Wen Luoh

Following that, I went to go schedule my neulasta and hydration appointment. It was then Jon said he had a chair for me. It was 1030. Sweet! I got to start my treatment early which means I get to leave early! Maybe I'll get to stop and get a frappaccino.

I've been getting so many visitors today. Bruce Murdock (DJ for K103 radio), on his way home, stopped by to say hello. He stayed for about a half hour and we just talked about anything and everything. It was good to see him. Next, Jim Newman who works here at OHSU, stopped by for our last treatment. If you recall, we've met up with him twice before for lunch or just to converse. Today he bought and brought us lunch to celebrate. So flippin' excited. I had a cobb salad and the boys had a reuben. It was sooo tasty. Following that I got asked to be in a study. They want to take some of my tumor biopsy and search for DNA mutations. I don't know if I want to participate because it stays in my medical records. I wouldn't have to do anything or pay anything. Hmmm...

Bruce Murdock & me

Jim Newman, Brad and me

So I should now have about an hour left. I am so excited. Did I tell you how excited I am?? Very very very excited.

**** **** ****

Okay, now I am home. I go done with my chemo sucky at 2:40p... which was 20 minutes early. I was a tad bit disappointed as there were no whistle or bells or certificates stating that I was done with chemo sucky. But that's okay, I had my own cheering squad. I won't say that I am completely done with chemo sucky until I get though the weekend.

Here are a few more picures...

Kerry Weymouth (social worker) and me

Brad was complaining about the visitor's chairs being uncomfortable, so we traded places.

He thinks my chair was more comfy.

Dr. Luoh passed by and did a double take when he saw me sitting in a regular chair and Brad in the chemo chair. He just chuckled.

Two of my favorite Oncology Nurses, Beverly and Nicole.

And that concludes Phase 1 - neo-adjuvant chemotherapy. Off to Phase 2 - surgery. This will be my hiatus from everything and I won't have to do much but relax and get stronger.

Tomorrow I get my 4mg of Neulasta and my one liter of saline. Then I wait and see! I promise I will get a picture of the $6,000 shot. I want to get a picture tomorrow of the 4mg shot. Then I'll show you both!

Oh yes, when I got home, I had a package waiting on my front porch. My dear friends Annie, Brooke and Kelli sent me chocolate covered strawberries to celebrate my last and final treatment of chemo sucky. Thank you so much girls! I love you! xxxooo

I'm sure I am forgetting something.... so thank you if I haven't thanked you already!

Day 87 - The Fun Continues!

Fun times at Chemo High! LOL

I am at work and I look at my phone during my supervisor meeting and what do I see?? I missed two calls from my oncologist's office. Uh oh. I could figure out one of them... a reminder that I have an appointment on Thursday. (yea me! Not). The other one was what was puzzling me. Can anyone guess what the second call was about??? Ha, you'll never guess. Anyway, Dr. Luoh's nurse was calling because Dr. Luoh wants to change my post chemo medication - namely the neulasta shot. Yea, that's the $6k one. So what do they want to replace it with?? Neupogen. What's that you say?? I'll tell you in a moment.

Dr. L seems to think that the Neulasta was giving me the nausea. It's not necessarily a side effect, but he wants to give the Neupogen a try. When I went in for two Saturdays ago to the ER they checked my white blood count. Apparently it was through the roof. It was so high. I'm doing a great job by staying away from the sickies. But he seems to think that since my white blood count is so high, the Neulasta is doing too much. With the Neupogen, the medication will be given in smaller doses over the course of seven days. Yes, I did say seven days. That means that I have to stick myself every day with a needle. I have to give myself an injection. Like I mentioned... the fun continues. So it looks like it's going to be the battles of the Ns... which one will win? All I can say is that if I have the same reaction, I'm going back to one injection. I feel sorry for the people who are diabetic. Eh, it's all good though. The shot would go in in my tummy, arm or thigh... basically where ever - as Angie says - "pinch an inch." Right now the OHSU pharmacy is taking my medical prescription coverage to see how much it would cost me to get the Neupogen. If it's a small copay or not extremely high, then I'll be doing the shot each day. But I guess we'll discuss on Thursday.

Now I am sitting here on the couch watching "Tangled" for the upteenth time.

Day 74 - Round 5: Taxol chemo prep...

Nothing much new on day 72 and 73, hence no post.

Definitely at the halfway mark for my chemo treatment. Tonight is the eve of the new stuff. Tomorrow I go in to get my dose of taxol. It should be an interesting day. Tonight I have to take a dose of dexamethasone. My nurse called me to remind me. So I asked her why I needed to take the dex. Angie said that it's a rare occurence of people getting an allergic reaction but along with the dex and a dose of benadryl, it will ward off any allergic reaction. Interesting. Then I asked her what will happen tomorrow. She said that I will get my dose of zofran, dexamethasone, zantac and benadryl. The zofran and the dex are for anti-nausea and the zantac and benadryl are for allergic reaction. I won't get emend for anti-nausea! Hooray, I guess they are fairly confident that I won't be nauseous. So tomorrow I will be tired during treatment. I find that benadryl makes me loopy. This should be an interesting day. She guesstimates that if all goes according to plan I will be in the infusion room for about 3 1/2 hours. That's not too bad. Now I know that there's no guarantees because there are always delays. But hopefully all will go according to plan. I won't be seeing Dr. Luoh tomorrow. Instead I will be seeing Sandra who is Dr. Luoh's counterpart. Along with being one of the first people in the building, maybe there won't be such a delay. One can only hope. Angie said I'll most likely be out of the building at 2:30p! Yay, before rush hour commute.

My friend Shellie also will be stopping by. She wanted to see me and I told her that I will most likely be there all day long. She offered to bring lunch. Nice. Maybe I can con her into getting Subway because I am jonesing for a meatball sub with lettuce, tomato and bell peppers. It will nice to have visitors.

My mom is in town now. Picked her up at the airport last night and she'll be here for the next week. She is here to watch the girls. Becky is on spring break and was planning to be out of town and it was a great excuse for her to come out. So far the girls are loving having her here. :-)

Hats off, literally, to Monty a.k.a. Jen! I got a beautiful hat in the mail from her today. It's gorgeous and it fits perfectly. Thanks for spoiling me. It was funny because I was just thinking that I needed some new hats. And my wish came true.

Day 62 - Round 4

Got my last infusion of the crappy AC. Yea. Trying something new for the vomiting and nausea. Had my ultrasound today. Good news, confirmed shrinkage of my tumor. Tumor before: 7.6 cm. Tumor now: 3.3 cm. Lymph node in neck before: 2.0 cm. Now: 1.4 cm. Axillary lymph nodes before: couldn't find them, meaning they were clumped together and indistinguishable. Now: can see the lymph nodes and they're looking like nodes again.

There's more to write, but I am beat. Going to bed. Will fill you in on more... just check back later for today's post.

*** Update ***

I promised I'd be back. Sorry it's later than I imagined. I have either been busy or tired.So here goes... Thursday, Brad dropped me off at the Center for Health and Healing. I took the tram up to the top of the hill where my appointment was. I got there and they told me they didn't have and appointment for me. However they did find someone to do my u/s. While I was waiting, there was a girl who helped me from the very beginning getting me my appointments, Amanda. She came out and talked to me. I told her it looked like things were looking up.I got into my u/s. It was the same lady who did my original u/s. I told her that I am doing better now and that the other day when we first met I was a horrible mess. She said that was okay... figuring under the circumstances. She did my u/s and we just talked about nonsense stuff just to pass the time. Then she went and got a doctor to make sure that she got everything. This time Dr. Chan came in. He said that everything was looking good. The longest point of the tumor had shrunk by half, the axillary node under the arm had shrunk. Before, the nodes were all clumped together and they couldn't distinguish a node. Now they could see the traits of the nodes. This is good news. The node in my neck had also gone down from 2cm to 1.4cm. I asked Dr. Chan what the size of node should be. His answer... he doesn't know as everyone's lymph nodes are different sizes. As long as they see the size going down, it's good. He did say that at the next screen they may not see much difference, but with other testing like an MRI and PET, they will see if the area is consuming lots of glucose and metabolizing a lot. That's an indication of cancer in a particular part of a body.Next I met Brad down at the Center for Health and Healing. Took the tram back down. Met him and got my blood drawn. Then after that we went back up the tram to get some lunch. I had a cheeseburger and fries. The burger was HUGE. I could not finish it. Then it was down the tram again for my chemo and meet with Dr. Luoh. With Dr. L, we talked mainly about controlling the nausea and vomiting. We are hoping this round will fair a bit better. :) Then it was time for my treatment.

Day 33 - Port Surgery preps

Good day again... though very trying with a 3 1/2 year old. I think Amelia was the only pain I had today. Grrr... but that's for another blog! LOL

Today during my lunch hour I sped to OHSU Health and Healing Center to get my blood drawn. I had a nice tech who used a small butterfly needle and a syringe to take my blood. She said I had tiny veins and that using a syringe instead of the vacuum type vial would be better suited for me and a lesser of a chance of her blowing my vein out. Good choice.

After the quick blood draw, I went up to the 7th floor to see if I could meet Angie, one of Dr. Luoh's nurses. They had her paged and I finally got to meet her. What an awesome woman. We exchanged pictures of our kids. She asked how I was doing. Apparently she read my file and saw that I had called in last Friday because of my back spasms. She asked what went on and if I took anything. I told her nope because by the time Mary Ann got back to me, the spasms were decreasing. Yay. She said that I was a trooper for putting up with the pain. But what really could I do? I couldn't take anything for fear of a fever or putting a blood thinner type drug in my body.

Then it was back to work. At 12p, I got the call that my blood work was okay and I had a time scheduled for my port procedure. Guess what time it's at... just guess... okay... it's aat 1:30p tomorrow! Holy smoke... and they said I can't eat past midnight tonight. No food, no water. Um... yea that's going to fly with me going in at work at 4a. I am going to be soooo dang hungry. Shortly after that call, Angie called and said that my labs came back great and that I should be hearing from the surgery department. I said, yea I already heard from them. I told her about the no eating. She said that I should definitely call them and see if I can eat anything between 12 and the time I go into work. She said that they obviously don't know my work schedule. So after work I gave surgery a call. What a treat that was... read on.

So I called surgery oncology. The woman who answered the phone was *fabulous* and I don't mean that in a good way. She said I couldn't eat after 12. I asked her what was the cut off time that I can't eat for surgery. She still insisted it was 12. I said I work at 4 in the morning and not eating from midnight on wasn't going to cut it and that I'd be starving and on my last legs if I could not eat anything. So after insisting a couple of more times that I wanted to know the minimum time between my last meal and surgery... she put me on hold to ask a nurse. When she came back on the line, she was curt and said 4 is the latest. Oh, did I mention that she said that they don't want me eating in case they can get me in early? Honestly, how much earlier can they get me in if I am to check in at 1:30? It's not like they are getting me in at 9a. Sheesh, some people. Brad will have half a day and will be coming with me.

So guess what I am doing at 3:30 tomorrow? hahahaha

Oh so this is what will happen tomorrow. I will pay $750 (credit card for airline miles!) to OHSU. Then they will take me in for the procedure which is "day surgery." My doctor is Dr. Rodney Pommier (his brother and sister used to babysit Brad). They will insert the smart port in my chest. The incision will be about one inch in length. Then they will make an incision in my neck. Some how they will feed a tube in that will go into one of my bigger veins. They will do this with either general anesthesia or IV sedation. IV sedation is easier because it doesn't take as long for me to "come to" - I'm not asleep.

Well, it is late... 8:30 and I need to go to bed. I just finished eating a late Valentine's Day dinner with Brad (leftovers) and my dessert consisted of two Samoa girl scout cookies. Yum. Tomorrow's dinner is already made - chicken enchiladas. Double yum!

Hi to Dawn! Hi mom... love talking to you.