Tuesday, March 25, 2008

Sunday, March 23, 2008

MRI update and other chaos

Well these last two weeks have been pretty crazy.. between moving, my last week at my job, a conference and the MRI mix-up, I'm wiped out! In fact, I'm wishing I didn't start my new job until Wednesday, but it's too late for that now.

So the MRI results came back last Monday. The nurse at the surgeon's office called and said it looked good. I asked her to fax me a copy and when I read it, I realized immediately that it was not me! It talked about last mammogram and MRI being done in 2005 and a lumpectomy scar from 2005. I called her back and she called the radiology office and when she called me back she said they were going to re-read it. The tech and the radiology office suggested it was just a mix-up in dates, since the mammogram date was 02 Feb 05 and mine was 20 Feb 08. I told the nurse that there was too much wrong with the report for that to be the issue.

On Tuesday, there was a potluck for me at work and I was talking with a couple people about the mix-up and quite a few recommended that I get a new MRI done at a different location, because even when it's re-read, how do I really know they are looking at my film? So, I started getting a little nervous about the whole thing, talking to a lot of people, making phone calls. I called the surgeon's office back and told them that I wanted the surgeon to call me to discuss this. I called my doctor and left a message asking for her opinion. I also called the radiology office, asking to speak to the radiologist. That one did not work, because they don't let patients speak to the radiologist, and I needed to go through the referring physician. I knew that was not a fight I was going to win, and since I was already dealing with a tension headache, I let it go.

On Wednesday, the nurse called again to say that the results came back and she would fax me the report. I asked her if she was comfortable that it was my report. She said yes, but I wasn't really trusting her since she missed the first one on Monday. She did admit to me that she only gave it a quick glance before she called me, but that did not really make me feel better. I asked her to have the doctor call me to discuss the report and the mix-up. Now, he only works 2 days a week, Tuesday's and Thursday's. She said he would probably call me on Thursday.

Thursday morning rolls around and I'm at my conference all day. I did not sleep well the night before, so instead of sitting in on all the lectures (I was a seat-warmer anyway, which wasn't needed, because we had a good turnout), I helped out with registration and questions. I called the office again to find out if I could get an approximate time when he might be calling me back. My phone was on vibrate, and I usually miss those calls. I was told that he was in clinic all day and would probably call between patients. Unfortunately, I did not hear from him on Thursday, and was getting annoyed and had pretty much decided that if he can't bother to call me back, then I did not want to be his patient.

On Friday, he finally calls and apologizes for not calling me sooner. He said he wanted to be sure that everything was correct and he had reviewed all of my films with the radiologist to be sure that everyone was on the same page. He said that the mis-read MRI was not me at all (no kidding!), and that he was comfortable that the new report is my MRI, based on the fact that he reviewed all of my films and reports with the radiologist and that I have the distinction of having more than one area of concern.

I asked him how often do these kinds of things happen and he said it was the first time he had seen it. He said that the radiologist had put the films up on the screen, for some reason had stepped out of the room, and when he came back, someone had pulled up another woman's MRI, and didn't close it and didn't tell him that it was there. I asked the doctor what quality control measures HE takes to make sure he's reviewing the correct films. In other words, if I hadn't requested a copy of my report, when would he have caught the error? He said that when I would have come back in to discuss surgery, he would have reviewed all of my films, starting with the first mammogram, and would have seen pretty quickly that the MRI report was incorrect. All of that being said, and after my discussion with him, I felt much better about the situation and did not feel like I needed to get a second MRI.

The MRI itself shows the tumor and the area of calcifications, and a third, previously unseen area under the areola. The MRI was not able to determine whether this new area or the calcifications area are malignant. Based on this information and the location of all the areas, he feels that a lumpectomy is still feasible.

I asked him how often he sees more than one suspicious area and he said in about 10% of patients. I then asked him about the research that came out that I heard on the news about women who are overweight and tend to have more aggressive tumors, and whether that article would change his approach. He said that there is a 95% chance of no recurrence if the areas are removed via lumpectomy and there are good negative margins, and radiation therapy is completed.

I still haven't made the appointment for the 2nd opinion. I was waiting for the MRI and result, etc. I did get a call on Friday from the doctor at Swedish and I'm going to call them back on Monday. I'm also going to see a doctor at SCCA who was recommended to me by a vascular surgeon who I used to work with at Madigan, who is now at Harborview. Also, his mother had breast cancer and eventually died from it, so he's another great resource for me and I trust his opinions and recommendations.

I have finally made the move from Olympia to Tacoma. I'm living across the street from my sister, which is awesome. Also, we just found out that she's having a baby boy and that is so exciting. Little Benjamin is due on my birthday in July! I love my little house. It's funky and old with a green kitchen floor and avacado countertops and fridge. My sister and I will carpool to Seattle every day and when she's on maternity leave, I'll start taking the bus or the train.

My new job starts Monday and I'm so excited to be working for the UW and in a great position.

These are the good and positive things that counter the bad ones and help keep my head on my shoulders. As my chiropractor said, I'm not in denial about what's happening in my life and I'm dealing with it in a good way. My body is not absorbing (too much) all of the stress I'm putting it through. I've been reading Eckhart Tolle's "A New Earth" and am working really hard on not feeding into the ego, and sinking into depression, but just letting it all go to the Universe. I have a friend who goes to Al-Anon (something else I want to do.. to sort out the remnants of my ex-husband), and she has a little stone with the saying, "let go and let god." I like that. Although, in my case it's "let go and let the universe." That's what I'm striving for in my life. Not only in dealing with breast cancer, but in dealing and living in my whole life.

Happy Easter!

Monday, March 10, 2008

In Limbo

It's been 7 days since my diagnosis. I am feeling almost ambivalent about it so far this week. Maybe it's because I'm busy with packing and getting ready to move that it's just not at the forefront of my mind 100% of the time like it was last week. Oh, I'm still thinking about upcoming appointments.. an MRI on Thursday and I need to schedule a 2nd surgical opinion. I'm waiting until after the MRI for that one though. Plus my doctor hasn't sent the referral yet. I have appointments lined up this entire week with the chiropractor tomorrow and acupuncture on Wednesday

In the meantime, I am packing up the house again (I just moved in October). I am relieved to have finally received word today that I will get the house I want to rent, across the street from my sister. One of these days, I must really settle down and actually buy a house! This house is great though, with an already dug garden in the back and flower beds in the front. I can't wait to get my hands back in the dirt. The kitchen is very 60's with avacado appliances and counter tops and a bright green and white linoleum floor. I'm hoping to lighten up the wood cupboards a little bit and change the knobs.

I had an appointment with my therapist today. I'm so glad I will be changing insurance in April, going from 12 visits a year to 50. She pointed out that the last 5 months have been quite eventful in my life... my divorce was finalized; my supervisor/co-worker left, making me the most senior (although not a supervisor) employee assigned to MAMC; I accepted a great new job offer at the UW; I'm moving; and I have been diagnosed with breast CA. I mean, WOW. She told me about a study that assigned points to certain stressors/major events in one's life and once 100 points is reached, one becomes more susceptible to infectious diseases (colds, flu, etc.). I'm way over 100, but I feel very calm about everything.

Everything about this job and this move just feels right. I can't explain it except it's a gut feeling. I am completely at peace about it. For some reason, the Universe has thrown this "little" wrench into things. I don't know why. But I have a strong feeling that I need to be working at the UW and fighting breast CA at the same time. Something is supposed to happen, and I'm excited about finding out what it is. Also, my new boss is very supportive of me. She is willing to not only hire me at the beginning of this journey, but give me whatever I need in order to deal with my medical issues. She has offered 50% working time (minimum required to keep the benefits), working from home and as flexible a schedule as I need. I'd be crazy not to take the job!

Back to packing for a little bit and then to bed.

Saturday, March 8, 2008

Cat

Cat is my chiropractor and she is super amazing. In addition to doing gentle spinal manipulation, she also does muscle testing http://www.goodhealthinfo.net/herbalists/muscle_testing.htm

Today we talked about some other therapies to help down the road, such as acupuncture to help with the side effects of radiation and chemo. She also greatly reduced my stress/tension/migraine headache by working on my back, neck and head. When she did the muscle testing, I came up strong on everything, except for being overwhelmed by too many decisions. She helped remove some of that energy block and got things flowing again and I feel so much better. I was able to have a good time with some of my family after my appointment.

She also referred me to a new massage therapist in Tacoma for after I move and change insurance.

All in all, I am very grateful to have a practitioner like Cat to go to, who can really help with the emotional and physical stress cancer is putting on my body. I set up a bunch of appointments for the rest of this month since my current insurance ends on the 31st. Then, I start all over again with my new insurance. woohoo!

too much information in my brain - massages - sick kitty

I suppose it's normal to go through bouts of depression... I don't know if I feel depressed so much as overwhelmed. There are just so many decisions to make about the profound impact this disease will have on the rest of my life. I am doing my best to keep all of these thoughts in the back of my mind, since I can't make any decisions now. If I let them consume me, I might as well just stay in bed all day.

I have noticed that I've been very forgetful. I forget to clean the cat box, I forget things people say to me. I forget to write down questions to ask the doctors. It's just too much sometimes.

At the moment, I feel like my head is going to explode. I haven't had headaches in so long and I just hate feeling this way. I will see my chiropractor this afternoon and she will help immensely. I also must remember (somehow) to ask her for a referral to a massage therapist who will be on my new insurance and is in Tacoma. It will be too hard to see my therapist in Olympia after I move.

I think I'm also going to see another massage therapist in Tacoma who I know of who does not work with insurance, but her rates are really good and I could get some extra tension-reducing massages.

I woke up at 2:30 this morning to my kitty, Mea, sneezing up a storm. You know cats aren't feeling well when they just lay there and let you pet them and don't purr. I gave her some antibiotics and I think I have enough for a 10 day course. Hopefully she will be feeling better soon.

Friday, March 7, 2008

I don't want to go to school!

Man, I'm tired today. I'm going to be late to work since I need to leave in 5 minutes and I'll I've accomplished is making coffee and cleaning the cat box.

I wish I could just stay home and stay warm and hide away from the world today.

But.. I need to not use my PTO. I need to keep at least 80 hours so when my last day at work comes (March 21) I'll get an additional full paycheck. That goes into savings for living expenses if I need them for taking time off down the road. If not, then I'll need that money to help pay all the co-insurance.

Luckily when I change jobs, my co-insurance will go from 20% to 10% starting in April.

Thursday, March 6, 2008

Pink

Ok, last post before I go to bed. Here's the question: Now that I have breast cancer, am I suddenly required to be an active advocate for breast cancer awareness/cure? I have to admit, taking up the pink ribbon banner makes me feel slightly hypocritical. While, I of course support finding a cure for breast cancer, being an advocate is just not something I've ever seen in my future. I'm not a big fan of putting myself out there in that way.

I've decided to do things this way: Right now I'm focused on my treatment and getting the best possible care to not only get rid of the cancer, but trying to make sure it doesn't come back. After that, when I've reached "survivor" status, I will have the time and energy to consider advocacy. In the meantime, I wouldn't be opposed to a pink t-shirt :)

Phone call from a new friend

I had gotten the name and number of a woman who just had a mastectomy from a co-worker. She was seen at Swedish and we thought she had surgery done by the surgeon at Swedish I've been referred to. It turns out that she (Beth) had her surgery by a different surgeon, but she was still great to talk to.

Beth told me to just breathe and be patient, even though I'm feeling so overwhelmed by everything. She said there is no point in seeing an oncologist until after I have surgery, which makes sense to me. All the oncologist can tell me at this point are potentials and options and possibilities. I don't want to hear any of that stuff. I want to have my surgery, find out if the cancer has spread, and come up with a plan. Beth also said to definitely get the MRI. It's important and probably the surgeon at Swedish won't see me without it. So, I think I will call the surgeon I saw today and see if I can get that set up. Actually, I'm going to email my family doc, who is on vacation until Wednesday to see if she should set it up or if the surgeon should. I'm also going to call Swedish tomorrow and just verify all of that. If the surgeon in Seattle wants an MRI as well, I don't see the point of seeing her until I have that.

Another thing she mentioned was a test called Oncotype. It's for women with breast cancer with a negative node biopsy and positive estrogen receptors. I have the positive receptors, so I'm halfway there. The test can predict the chance of recurrence as low, medium or high. Low is 7-8% chance of recurrence. That's what Beth has, so she doesn't have to get radiation or chemo. Even though I don't know if I qualify for the test, I am going to call them tomorrow. I want to find out if my new insurance will cover the testing.

We talked a lot about sleeping. I have been really surprised this week at how easy it is for me to sleep. I don't sleep that well anyway, but I've pretty much slept through the night the past 3 nights. Beth is the same way. It's a coping mechanism for the stress.

Speaking of sleeping, I need to get some. It's nice to know I have someone else to add to my list who has been down the road I'm about to go down and who I can call with any questions or if I need to express my frustration and upsetedness to someone who knows what I'm going through.

First visit with the surgeon

I was surprised by how open the surgeon was. He talked about the different options, but is inclined to start with breast conserving surgery, which works for me. However, before that determination can be made, he wants me to get an MRI of both breasts just to make sure there aren't any hidden lumps that weren't seen on mammogram. Since I have two areas of concern, the tumor and the micro calcs, if any others show up then I'm most likely in for a mastectomy.

The lumpectomy surgery would consist of taking out both areas in one large excision and also doing a sentinel node biopsy to see if there is any cancer spread to the lymph nodes. During the surgery, the pathologist will be able to determine if the node is positive or negative. If it's positive, they will take out about 1/3 of the lymph nodes.. basically all the nodes in the axilla. Although the surgery would be under a general anesthetic, I would go home the same day.

Since I plan to see another surgeon for a 2nd opinion, we didn't make any definite plans for the MRI.

Oh, and he said it is normal for the tumor to feel larger and closer to the skin. The biopsy caused the tissues to swell. At least I'm not imagining things!

I have breast cancer

That's not a very nice thing is it? But, it's a part of my life now...

This has been a very crazy, busy week since finding out about my diagnosis on Monday. Between family, friends, doctors, and women I don't even know, I don’t think I’ve ever talked on the phone so much in my life as I have the past 3 days. I'm grateful for the attention though. There is nothing worse than being diagnosed with a terrible disease and then never getting a call or email.

The pathology report from the biopsy has some encouraging news in that the estrogen and progesterone receptors are positive. This means I can be treated with anti-neoplastic drugs such as tamoxifen.

Today, I have my first visit with a surgeon in Olympia. I have received some excellent advice and support at work and I feel that I am prepared to discuss the different options including lumpectomy vs. mastectomy, radiation and chemo options.

Ok, so this is weird. Before I had my first mammogram, I did not feel any lumps. My doctor had done a breast exam the week before and she did not feel any lumps. During the week between “abnormal mammogram” and “biopsy” I felt around looking for a lump. I finally found it after the ultrasound was done and realized where the radiologist was looking. I mean, I had to kind of dig for it. Now that I’ve had the biopsy done, this lump is so completely obvious on the underside of my breast, I don’t know how it could have been missed. I’m wondering if the trauma to the tissues associated with the biopsy somehow made it stand out more. Or, now that it’s become the object of so much attention, it’s just more obvious. I don’t know. Another question to ask today.

I made a 3-ring binder to organize this phase in my life. Lots of tabs with names like, "diagnostic reports" "pathology reports" "healing retreats" "correspondence" "other women with breast CA" "surgeon notes" It goes on..but it's a good resource for me to make sure I have all the information I need.

One of the challenges I'm facing is where I should get treatment. I'm currently living in Olympia, about to move to Tacoma, and start a new job in Seattle. So, hmmm... do I get treatment where I live or where I work? Do I get some treatment in Seattle and some in Tacoma or Olympia? I don't know right now. I'm seeing one surgeon in Olympia and one in Seattle, so I'm just going to go with the person who makes me feel the most comfortable.