Day 136 - Pink Attire!

A shout out to my girl, Ann! Thanks so much for my package! I can't wait to start reading again. I forgot to tell you that I finished "Death Comes to Pemberley" right before my last treatment, so I was on the hunt for a new book to read. I am excited to read "Fallen." Thank you for the wonderful shirts, too. There were three shirts... one for me that reads "Losing is not an option. I will fight I will win." Then there was one for Amelia. Hers reads: "I wear pink for my mommy." And then there's one for Elaina: "She wears pink She fights hard She is my hero She is my mommy." I love it! All three of us will wearr our shirts and I'll have Brad take a picture so I can post our matching outfits. Thank you so very much, Ann! Mwah!

While I am on the subject of thoughtfulness... I don't think I thanked Anne for her gift... a water bottle. I get to customize the bottle. How awesome is that? I will have a one of a kind hydration station. :)

I have another appointment scheduled... I have an appointment for my pre-op breast surgery appointment on Thursday at 10:15a! Wowsers. I can't believe how quickly time is flying by.

Hair is growing back... it's still peach fuzzy... but at least it's longer peach fuzz. My eye lashes started to fall out with two more treatments left. But it's just the lashes on the bottom. So I have about 5 or 6 lashes on the bottom... but it's full on top. Eyebrows are still there... they're not as thick as normal, but you can tell that I have brows.
Dad is in town... and last night we went out to the Portland City Grill. Oh my was it delicious. I had a drink called the Lemon Chiffon Wedding Cake (Pearl Wedding Cake vodka, fresh lemon sour, bartender’s whipped cream). I took one sip and it was a flash back to my wedding cake almost 10 years ago!

Until next time...

Day 135 - A moment frozen in time

A few weeks ago, before my last chemo sucky treatment, I asked Eugene to come over to the house and sort of document this phase of my life. I wanted to get some nice photos of me with no hair and me with the kids. I know I will look back on this phase of my life as just a little blip. But I wanted to get some pictures to remind me for when I can truly laugh and say, "Cancer picked the wrong person."

Here are a few pictures.

Thank you, Eugene! Thank you for your support and taking the time out to document this for me.

Day 134 - Pictures...

Nothing much to report on the home front. Just continuing to recover from my cold. I am about 95% there. Every so often I get into a coughing fit, but they are few and far between.

Here are a few photos that I just hadn't gotten a chance to post.

Yummy basket from Mom & Vern to celebrate no more chemo-sucky.

These pictures were taken on 5/17 when I had pre-op appointments.

At the base of the OHSU tram. There's an overpass that has been under construction the whole time I have been undergoing treatment. It's just about done. It goes over I-5 and has an elevator.

On the tram looking at Downtown Portland. We are over I-5.

At the top, looking down. The building to the right of the tram cables at the bottom is the Center for Health and Healing. I spent many hours on the 7th Floor.

That's me and Brooke. She's a Nurse Navigator and simply AWESOME!

Jennifer and me. Jennifer is a CNA (counterpart of Jon's) and she was out sick the day of my last treatment, so I had to stop by the infusion room to get a picture. She was a great cheerleader during my treatment.

Last night I went out to dinner with best friends, Tracey and Eugene. We went to piazza italia. Yumm-o! We celebrated no more chemo sucky. Thank you for my wonderful gift - a full service pedicure and my "Jacob's Ladder." So excited for what's to come. :) Tomorrow my dad comes into town and we'll be going back to the Portland City Grill for more celebration.

Be your own advocate

As the title of this blog states... you've got to be your own advocate. I called OHSU this afternoon to pay the last of my bills. The first one I paid, since I paid in full, I got a 10% discount off of the bill. However, I had to ask for a discount. So make sure if you're paying in full to ask if they give any discounts. All they can say is, "No," right? All my bills I've been asking if they discount if I pay in full. On one of the bills, the lady said she was going to write it off. So I saved myself $19 and then I got another 10% off the bigger bill. :) And yes, be nice.

Back to today... then I had to call another department to pay a different OHSU bill. I asked the billing agent to tell me how much I owed on my account. It was a lot bigger than what I had expected. She said it was bigger because there were three other bills that needed to be paid. I asked what they were. They were for treatments from February. Hmmm... February? I paid for that. So I asked when I was billed out. She then said I already paid for those treatments, as well as the one that I was calling in about. OMG! I am so glad that I challenged the charges. So instead of double paying, I got a billing rep who sort of knew what she was doing. She said that she would send the billing information up to get it taken off of my record. She also said that she would send me out a new statement. So I saved myself $300+ today.

Again, like I said, you need to be your own advocate.

Day 130 - B-Day! Mastectomy Scheduled

B-day... and I don't mean birthday. Yes, I am coding my double mastectomy as B-day, short for Boob Day.

After three days of back and forth calls between the surgeon scheduler, I finally have a date of my double mastectomy... Friday, June 15. As Brad says... Happy Father's Day! It took so long because I have to have two surgeons with two different specialties. Coordinating their schedules can be taxing at times. First my breast surgeon wasn't available. Then the rescontruction surgeon wasn't available. So on Tuesday I got a call from the breast surgeon scheduler telling me that Dr. Naik emailed Dr. Thaker (reconstruct) - who was on vacation for the week - asking her to see if she had any time open the week of June 11. Dr. Thaker then had to call her scheduler... and I guess many calls between the two schedulers they found time. There was apparently a cancellation for June 15 and, well, that's good for me. I am glad. I don't know what time my surgery will be, but I hope it's early. I will know the time the day before. My next appointment is a pre-op appointment with Dr. Thaker. That's on June 4. We will go over the pre-op stuff, complications, consent form, pick out the type of tissue expanders I'd like and answer any other questions I might have.

So, I only have 24 more days of my teeny, tiny defective boobs.

Oh, and I do apologize for my lack of posting... I've been busy with the girls, work and just really don't have too much news to report.


I do want to give a shout out to my girl out there... fingers crossed. ;-)

Day 127 - Oophorectomy Surgery, Breast Surgery & Breast Reconstruction Surgery

Sorry that I haven't been posting as frequently. I have been busy at work, getting over a cold and just busy when I get home to get to the computer to really post. Most of you may be wondering what happened at my three appointments on Thursday. Well, two out of three of them went well...

First appointment was with the Gynecologist Oncologist or gynoc. The appointment started off well enough. I went in and we started discussing the oophorectomy. Somewhere during our discussion the appointment went from a consultation to a pre-op appointment. The doctor left and told me she wanted to examine me and to get undressed. Then she came back in and looked at me and did a pap test and more. Then she left and said we'll discuss more of the surgery when she returned. But before she returned, her nurse came in with a tray full of blood. I said what are those tests for? She said she didn't know and said she could go and ask. I said yes because I didn't want to give blood without knowing. She left and then came back in. Turns out she was getting blood for pre-op stuff. I said, no. I didn't want to give any blood through my port because I was going to be talking to my other surgeons and they might want some other tests done and I didn't want my port accessed twice in one day. Hell no. Then I just broke down in tears because it was happening all so fast and the doctor didn't even tell me what the hell was going on. She had disappeared and said she'd be back to talk about the surgery. I figured we'd talk more about what went on and ask more questions. At that time the doctor came back in and I asked her what was going on. I said I came in for a consultation and where did this turn into something else? She replied that "You seemed certain that you wanted the surgery so I went ahead and made this into a pre-op appointment." I said, "Where did that change?" I told her I was a planner and I don't like surprises and I feel like I am being surprised right now and it doesn't feel good. It was at that time that she actually took time to discuss with me the procedure and what sort of other tests are she's going to need... blood, ultrasound and something else. I refused to give blood, so they set it up that after I meet with the other surgeons, I can get my blood drawn. We also talked about if I should get my mastectomy with immediate reconstruction and the oophorectomy done at the same time. I hadn't decided because I hadn't talked to the other surgeons yet. So after that discussion, we went through the pre-op stuff, like the risks and what not. She does laproscopic surgery. She'll make up to 6 incisions in my abdomen to snip and drag out the fallopian tubes and the ovaries. Once they are taken out, they are sent to the lab to be "staged" - to see if there were any microscopic cancer cells/tumors. In about two weeks the results come back. Now normally if I wasn't BRCA positive, they would stage in the operating room. But they want to be certain that everything is okay. The surgery takes about 2 hours and if I was doing this as a stand alone surgery, I would go home the same day. I asked Brad if I was overreacting about the whole appointment. He said no, because he thought that this was going to be a consulation appointment and not a preoperative appointment. He noticed that it changed its course with no warning. I am not sure if I want to go with her. I may talk with Brooke or Christine about her because I am not sure if I want to go with her because of her bedside manner.

Following that disasterous appointment, Brad and I walked to the Old Spaghetti Factory for lunch. That was a nice walk... it's about a mile away if that. We had a nice lunch and then walked back to OHSU's Center for Health and Healing for our next two appointments. We meandered our way back because we had about an hour to kill.

We got to our appointment about 20 minutes early and then were led back into a room about 2.30p. On our way there, I saw Maureen one of the CNA who works with Dr. Luoh. Then I passed the nurses station with the schedulers and Brooke was there. She ran out to give me a big hug. We talked for just a moment before we went to the our room. To make a really long wait short... I wandered out of the room and up to the nurse's desk to talk to Brooke. I told her about the disasterous Gynoc appointment. She and the scheduler, Sierra, were happy that I stood up for myself and said No and stopped all procedures from happening. They said that many patients don't advocate for themselves and just go with it. I always try to be in the know and so that way I am prepared. In any case, I saw Dr. Pommier, the surgeon who put in my port while I was chatting with the ladies. He called me out and asked, "How's it going Mrs. Rake?" I laughed. Finally after 3p, I finally got in to see Dr. Naik. She was finishing up with a patient. She looked at my boobs and was impressed that I responded so well to treatment. We talked about surgery and the whole appointment was driven by me and Brad asking questions. My first question after she examined me was "Would you suggest that I be a candidate for a lumpectomy now - IF I wasn't BRCA positive?" She said yes. That's all I wanted to know. I don't want a lumpectomy, I just wanted to know if I responded well enough to the treatment where a lumpectomy was a possibility. I'm still getting a double mastectomy. I asked how long the surgery takes... normally 4-5 hours. We discussed whether we should do an oophorectomy at the same time. She said that some patients do, but recovery time is longer. She suggested that I not do it at the same time. The oophorectomy will have to be done after her surgery, so that would mean I would be under anesthesia for 6 hours at the minimum and that's too long. Good to know. We talked about drains (a question she deferred to Dr. Thaker), good clothes to wear afterwards, pain protocol (narcotics, she uses IV pain, then changes to pill form as soon as the patient can handle pills), port removal (she's going to take out the port during the surgery - hooray!), is surgery scheduled for morning or afternoon (morning). I also asked what kind of lymph node dissection she will do. She said she would do an axillary dissection. She will take out 10-20 nodes depending on how many are there. Each person has different amounts of nodes in their body. She said that she will take out the cluster that was affected under my arm... and that may be anywhere between 10-20. I asked about the different levels of node dissection. She said that they normally do Level 1 and 2. Level 3 is where it's deep in the body and she normally doesn't do those unless she has to. Brad asked if the incision would be bigger or smaller now that the tumor has shrunk. She said that it would be a bit smaller. I asked how many nights I can expect to be in the hospital. Dr. Naik said anywhere from 1-2. I will have the drains in my body 10-14 days. I will be sore for a couple of weeks. My next course is another pre-op meeting where we go over the nitty gritty information and get waivers of consent. I will need an EKG and blood work. We asked her about blood work... which she wants about a week before the surgery. She said that since my last treatment was a week ago, my blood counts will be out of whack. It won't be a true representation. (Um, then why did the gynoc want my blood today? She should know that right after chemo, my blood counts won't be a true representaton) We said cool. I can't wait for the next step. Dr. Naik said that I look good and she can't believe that time has passed so quickly. I so believe it!

Next we waited for the last surgeon... Dr. Thaker. She came in and was so upbeat, energetic and I really like her. She said that I look great! She remembered the first meeting and she said that I look so much better than that meeting. Um, yea. :) Her first question was if I wanted to stay the same size or if I wanted to go bigger. I said, after all this, I want to be bigger. She laughed. She said that we will go with our original plan to do the tissue expanders and then after radiation, we'll switch out the expanders with the implants. Hooray! This appointmet was again driven by Brad and I. We had questions... the surgery will last about 1-3 hours. If all goes according to plan, as soon as Dr. Naik is done with the first breast, she will be called in and she will place the tissue expander under the pectoral muscle. She says usually when she's done with that, Dr. Naik is done with the second breast... so it's sort of a tag team. Wonderful. Less time under. She also uses a product called AlloDerm. AlloDerm is used because the pectoral muscle will not cover the whole expander and it creates sort of a sling. It's made of collogen, so blood flow and cells will begin to take over it. She calls AlloDerm as an empty apartment, and my body just needs to move in! I like her - did I mention that? After the expanders are in place, she will put in some saline so at least I will have little boobs after surgery. She doesn't want to fill them too big because she doesn't want to stretch out the skin and cause bad healing. Apparently when Dr. Naik goes in to do the mastectomy, she takes away a lot of the blood flow, so my skin needs to find new ways to deliver blood to other areas of the skin. I didn't know that. That's interesting. After about two weeks, I will see Dr. Thaker and the injecting the saline in the expanders. She'll start off small and then increase (100mL max). She said that it usually takes about 3 appointments until the desired size or about 4 weeks. Hooray! It's going to be cool because she said that I will be taking my new boobs out for a test drive. I don't have to guess. All I have to do is say "stop" and that will be it! So when I reach my desired size she'll put a little more in to for some "padding" and that will be it. Then I go to radiation and do that. Following that, she waits 3 months to make sure the skin has healed. If my skin does well, then it's on to the implant switch. That surgery will take about 2-3 hours. It is at that time that I think I will do the oophorectomy. Dr. Thaker said that would be fine. I asked about nipple reconstruction. That can be an office procedure at a later date... and tattooing would be done in office as well. I told her that I will be flying in September and since the expanders have metal in them, what happens. She said that she can write a letter stating I have expanders. She said that if I go to some remote area, then they may not take the letter... but she does write letters and says that normally security doesn't ask, nor does it cause problems. She said that when she was going through security at LAX, the security person asked if she had implants. She said, "No, but I have a lot of patients who do. Thanks for asking." I laughed. She said that I will have several drains... the breast and I may have one in the lymph nodes. They will be taken out in the office and held in by a stitch. As for pain management she puts in a pain pump which is a tube that that goes into the breast and numbs it, similar to novicain at the dentists office. It usually lasts about 3-5 days depending on how much I use it. When it's done, I can pull it out at home! Oh yes, she said that Brad can administer the saline into the tissue expander... um, no. She also said that when I am expanding, she will give me some pain medication to take before going to bed. She said that it's more uncomfortable and most people have the pain when they're going to bed and trying to relax. Our next appointment will be a week or so before surgery for the consent form and to go over the actual surgery. Fantastic. She'll also show me what the expanders look like. Oh yes, at a later date, she may take some fat from another part of my body and insert it onto my chest to make the breast look more natural - rather than two cantalopes. Ha. She then showed me pictures of breasts before, tissue expanders and then implants. Looks good! I can't wait.

Day 122 - MRI and breast cancer

Today started off not so great. I kept waking up every hour either waiting for my alarm to go off or to go pee. Finally at 3a, I got up out of bed. I felt like crap. But I had to get into work because I knew the other person who is supposed to open the building with me would not be there. So I got in and opened the building. Three minutes after my counterpart was supposed to be there, she showed up. If I hadn't been there, the building would have been open with no supervisor and no one to disarm the building. I can't tell you how pissed off I was. So I waited around until a few more supervisors came in so I could leave. I finally got out of the building at 6a.

When I got home Brad was getting the girls ready for Becky. Amelia said she was not feeling well. Brad was not feeling well either. Nevertheless, we got the girls ready. I went back to bed and fell asleep for about an hour or so. It felt good to sleep. Brad came home around 9:30a because he wasn't feeling well either.

At about 10.30a I left because I wanted to drop off some diapers at Becky's. Elaina was having some issues. Poor girl! :(

I got to the hospital at 11:45 and at 12 they called me back to put the line in my arm. The nurse couldn't find it so I got poked three times. Then they called the IV team. They never showed, so another nurse tried another place on my arm. She go in and I was good to go. Unfortunately, that took an hour. So I was running late already. I made them call the breast center to make sure they knew I was running late because of the MRI. I downstairs and they were ready for me. I made myself comfy on the table... face down... with my boobs dangling in the wind. I made sure to ask the techs to put the contrast in me at a slower rate that way I wouldn't get nauseous. I even took a half of ativan before getting on the table. The scan went well and it was only 15 minutes long. Glad it went well. While I was leaving, I saw a scan of my boobs on the screen. Pretty cool.

I hurried up and got dressed to move on to my next appointment which was my mammogram. I got there and checked in. Debbie, the receptionist, said I was so brave. She was the one that I talked to yesterday and said that I wanted to do the MRI. In any case, the mammogram was fine. There wasn't any issue.

Then I went back to wait for my ultrasound. It was then I saw Brooke. I love that nurse. She's awesome. She said that I always make her feel happy and good. :) Neato. Next it was the ultrasound time. I got a tech who was from France. She was nice. I was watching what she had on the screen. It was really difficult to see what she was looking at. She finished and then left the room to get someone to look at the pictures. I was just dozing when the door opened and Dr. Chan walked in. He said that he got to take a look at my MRI and it looked clear. I said, "Excuse me?" He said that he can't find the tumor on it. He also said the French woman was having issues find the tumor on the ultrasound, so he wanted to tak a look at it himself. I said fine. He even had issues. What happened is that the tumor has shrunk so much that it may be in "littler" pieces. He checked the lymph nodes and he said those have all shrunk. I started tearing up on the table. I was not expecting that sort of news. I expected to hear that it was still there, but smaller. Not that the MRI didn't show anything. I am sure there's still tumor. Now I am going to ask if I would be a candidate for a lumpectomy.  I will not get a lumpectomy, but I just want to know if I would be a good candidate for it. I asked what he saw on the mammogram. He said that my breast tissue is so dense it's really hard to see anything. Cool. Before Dr. Chan left, I made him repeat the MRI results. I am so happy and elated with the news. Too cool. Now I can't wait until the appointments on Thursday. I'm beating this breast cancer. It picked the wrong girl.

On my way home, I stopped by to see Dr. Desiree Bley to tell her about my good news. I also wanted to ask about what to ask the gynoc. We want minimally invasive surgery. Good to know. It was nice to see everyone else there too. :)

I am pretty wiped... so I will be going to bed. More later. Still so excited

Day 121 - Back to the ER

Today's ER trip is brought to you by my daughter, Elaina. What a special Mother's Day gift.

So after Friday's trip to Mt. Hood Knight Cancer for hydration and Neulasta, I was good to go. Saturday (Day 119) was a great day. I just had my normal bone and joint pain, but nothing to cause alarm. I did notice that on Friday, Elaina started getting a runny nose, so I made Elaina stay far away (well as far away as she possibly could) and made Brad take care of her. But that made no difference. I started to get a drippy nose Saturday evening. I thought that maybe it was due to allergies. It's hot here and everyone was out mowing their yards. Saturday I went to bed... only to wake up Sunday morning with a really scratchy throat. It felt almost dry. The sore throat didn't go away. The stuffy head came and went. Then came the shiverring while under my down comforter. I took my temperature and it was anywhere between 100.4-101. Time to call the on call oncologist. He told me that I should go to the ER and make sure there wasn't anything else associated with the fever.

So thank you Nancy for taking me to the ER and thank you Becky for picking up and watching the girls. I so appreciate it. I was at the ER from about 530-915. Ugh. What did they do in that time? Took my temp, gave me a liter of saline, swab for strep throat, 2 chest x-rays, a urine sample and blood draws through my port. The strep test came back negative. The x-rays looked good. And my white blood count came back at 57,000. So I was good to go. I was just concerned about the fever and since my temp was coming down and I wasn't shiverring, I figured I was getting better. I even got a little turkey sandwich while I was there. I was so hungry.

So the doctor wants to treat me as if I had strep throat, even though I don't. I have to take antibiotics for the next 10 days. Dr. Luoh's nurse called me this morning and asked how I was doing. I told her I was fine. She said that she was going to check and see if I needed to take the antibiotics for the strep. I haven't heard back from her. No biggie. I am just taking it until I hear otherwise. I believe there's no adverse effects between the chemo sucky and antibiotics.

Also today I got a call from scheduling. Apparently Brooke, one of the Nurse Navigators, remembered that I didn't like MRIs. So she got it okayed from Dr. Naik to cancel my MRI for tomorrow. They would just try to work off of the ultrasound and the mammogram. I told the scheduler to keep the MRI appointment because if they don't get what they need, then they will have to ask for one anyway. I figure I will just take an ativan while I am there. No worries. I just don't want to throw up while in the tube. I do, however, appreciate Brooke's kindness to try and not schedule me for that nasty test.

Here's what's up for tomorrow... MRI at 12, Mammogram at 1:20 and ultrasound at 2p.

Special shout out to my mom and Vern. Thanks for the wonderful basket filled with fruit, chocolate, cheese, crackers, nuts and more! Love you!

Day 118 - Hydration and Neulasta

Okay... I am now completely done with chemo-sucky and all that goes along with it (except for any sickness or side effects). After work I went in for my last hydration appointment. One liter of saline over the course of 1.75 hours. Then my last Neulasta shot... all 4mg of it. I am so happy! Now I await this weekend... and if it's anything like last, which I am sure it will be, I will be achy tomorrow and then a lot less achy on Sunday... which is Mother's Day! Wahoo!

Here's a picture of the $6000 shot: 

And here's a picture of the $6000 shot with $2000 of it thrown away:

When I got home this afternoon... I went to the mailbox and got the mail I was so waiting for... my last card from my Aunt Patti and Uncle Billy! Thanks so much for those cards. Again, they really meant a lot to me. I made it and yes, chemo-sucky is now over. And yes, I will be getting myself some new clothes... nice new tops that will be able to fit my brand new boobs!

Next week starts the endless tests for the surgery and doctors appointments. But I'd rather have those! Hee hee hee! I still can't believe that I made it past this point. I did it!!!

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 116 - 'Twas the night before chemo-sucky...

Hee hee hee!

'Twas the night before chemo-sucky and all through the house
Holly was jumping and hollering
And not quiet like a mouse!

Yay! I finally made it! The last treatment of chemo-sucky. I did it. I am soooo incredibly excited to be at this point. I knew I would get here, but it has come soooo fast. The 8 treatments or 16 weeks have really gone by in a flash. I am so ready to be done with Phase 1 and to move forward to Phase 2. (Phase 1 - chemo sucky; Phase 2 - surgery; Phase 3 - radiation; Phase 4 - reconstruction) I am happy to know that the finish line is in sight. And I am so happy not to have to take steroids tonight!!! Yeehaw!

Thanks to my KATU friends... we just got our second and last delivery of meals.

And now I remember what I was going to write about in the last post...
Chris, my brother-in-law, fixed my car!! It was a short in the spark plug wire that was making my car shake and quiver. The wire was broken and the current was most likely arching to the other side. That's why it would not shake sometimes and other times it would.

Tomorrow my day starts at 8.30a with a bone density test. Fun times.

Until tomorrow...

I've got it! I've got HAIR!

This isn't the thing I forgot to post. But I have hair! I was looking in the mirror in the hall of my house and there's lots of light. I was looking not for hair, but I was looking to see my left eye twitch. (It's been twitching all day long.) Anyway, I noticed that I have hair. It's not hair like you would have, but it's soft and peach fuzz-like. It's just perfect! I'm excited because it's about a millimeter or so long. You can only see it in the light... at least I can only see it in the light. Maybe you could see it better. I saw it earlier this past week, but I thought it was fuzz that was left on my head from one of my hats... ya know like yarn. But I didn't wear one of them at all today. :) It's very light and I am not sure if it has any pigmentation. From what I have read online, when hair grows back, it will be soft and fluffy at first and then become more like hair we're used to. I'm excited

Day 114 - No DNA Mutations!

So I've got more good news to report. Dr. Luoh released my test results for my likelihood of being predispositioned to getting blood clots. I checked mychart on OHSU's website. The two DNA mutations Dr. Luoh was looking for came back as negative for mutations. Here's one of the results:

Prothrombin mutation analysis shows that there is no mutation in either copy of the prothrombin gene at nucleotide 20210.

And here's the other result:

The Factor V Leiden mutation analysis shows that there is no mutation in either copy of the Factor V gene at codon 506.

So that's good news. Any news is good news, right? Yay!

And now I have yet another appointment scheduled... the clinic called today to schedule an appointment with the gyn-oc. So I see Dr. Melissa Moffitt on May 17. All my doctors visits will be next Thursday. It was funny, the clinic called and said that she wanted to schedule an appointment. I had to ask, "Um... what specialty are you calling about?" Does no one say what clinic or specialty they are scheduling for? Most annoying. So this afternoon I text my OBGYN to ask if she knew this doctor. She said to make sure that I look for the words "minimally invasive" when speaking to her. Good to know. :)

I'm am trying to get on a health kick right now. I have gained about 10-11 pounds in the past 4 months (good thing). I tried very hard to make sure I didn't lose any. But now I want to change that weight into muscle. And now that I am nearing the end of my treatment and feeling better, I feel like I can do more activities. So I am doing my sit ups again, eating less junk food and walking more. Yesterday I took the kids to the park. Nice one mile walk pushing a stroller. Today we danced around the living room.

I also want to give a shout out to one of my fellow chemo-sucky friends... his WMDs are doing its job as his tumor marker went from 225 to 45. Low numbers are good in this world. Very exciting.

Oh and Aunt Patti... I can't wait to see this week's card! I love receiving them. :) I enjoy the drawings!

I feel like I want to write more and I am forgetting... but I just can't figure out what I was going to write. Oh well. I'll remember and post later. :)

Day 113 - Neuropathy

It's Day 113 of my plight with breast cancer. I am so looking forward to this Thursday. It will be Round 8 of 8! I'm very excited. And more excited because Dr. Luoh and I found a great balance of meds to make sure I don't get sick!

So it's about a week and a half since my treatment. My fingers and toes are still feeling the neuropathy side effects. I am hoping they go away in time. I am not so sure. :(

Here's a definition of neuorpathy:

Mononeuropathy is damage to a single nerve or nerve group, which results in loss of movement, sensation, or other function of that nerve.

Causes, incidence, and risk factors

Mononeuropathy is a type of damage to nerves outside the brain and spinal cord (peripheral neuropathy).
Mononeuropathy is most often caused by injury, although body-wide (systemic) disorders may cause isolated nerve damage.
Long-term pressure on a nerve due to swelling or injury can result in mononeuropathy. The covering of the nerve (myelin sheath) or part of the nerve cell (the axon) may be damaged. This damage slows or prevents signals from traveling through the damaged nerves.

It goes between feeling like my fingers tips and toes are tingly to numbness to feeling like a car door slammed on them. It's really interesting. Can't really put your finger on the way it feels. Nevertheless, it's more annoying than anything. Sometimes it can feel like after you get something done on your mouth at the dentist like a cavity filled.... you know that your lips are still there, but can't really feel them.

But other than the neuropathy, that's all I've been dealing with the last week. I still can't believe that I am nearly there with the chemo-sucky. I am rejoicing and want to thank each one of you for supporting me through this. Without my cheering squad, I don't think I could have remained so positive.

Day 109 - No Steroids!

Today was a great day. No pains to speak of... well, maybe two... and they're called children! haha!

I forgot to post last week that I don't have to take the steroid dexamethasone. Dr. Luoh said if I didn't have any reaction to the taxol on treatment day, then I wouldn't have to take the dex the night before my next treatment. This is great news because the dex can make me retain water and make me more hungry. I feel like a friggin michelin man. I hope to loose the water retention weight which of course is right around my belly. I don't want the reconstructive surgeon to have any reason to do a skin graft from my stomach. I want the tissue expanders.

So, in lieu of my upcoming double mastectomy and immediate reconstruction (with tissue expanders), I've created a poll. Please participate in my non-scientific poll to the right. Would you increase, decrease or keep the same size of your breasts?

Day 108 - Who's calling?

Well, Sunday ended with a bang - good bang that is. I felt great all day long. Now if I only felt that great at night. I've been having severe hot flashes at night. I'm hot, then cold, then hot again. I can't sleep very well. But I'll manage. I think I'd rather have the flashes than the chemo-sucky.

So Monday I ended up staying home. I liked staying home. I was tired and fighting fatigue. In addition, I was having some leg pains that made my legs feel like rubber. I wasn't sure if I was going to be able to stand, let alone walk. But I took some ibuprofen and the pain went away... just 400mg. Nevertheless. It was nice to be at home and not have to be feeling ill to the point where you're wondering when the nausea was going tos go away. I even managed to get in a little grocery shopping in. Monday I also took Amelia to her dentist appointment. She may have a little cavity. Boo. But she makes such a fuss about the x-ray machine that we didn't get any x-rays. But she did get her strawberry polish and flouride in. She did really well.

The title of my blog entry is "Who's calling?" My phone has been ringing - seems like - non-stop. I've got doctors offices calling me. And I don't even know why. First up was a call from the scheduler to tell me that I have new appointments and that if I had any questions or issues to call. Thank goodness I looked at my My Chart account for OHSU and saw that I have three tests scheduled for Tuesday, May 15. It all starts with a MRI. Next up, a mammogram at 1:20p, followed by an ultrasound at 2p. That's just on one day. Then they scheduled me with Dr. Naik for my surgery on Thursday, May 17 with the reconstruction surgeon, Dr. Thacker right after. Yay! I can't believe that I am finally here at this point... scheduling my actual surgery. It seemed like a millennium away. That was January 26! So happy to be at this point. I didn't think I was going to make it.

The next call I received was from a Maryann who said that she's waiting for a referral request and to give them a call if I had any questions. She left a voicemail. She didn't say from what office or who referred me to that office. I was clueless. So I called the number and the receptionist said that it was Dr. Dennis Bley who was the referring doctor. Really? I haven't spoken to him since January 13th. So I text his wife and said I was confused. I had called his office, but he's not in on Monday and there was now way of being able to leave him a message. So his wife, Desiree (who you may remember is my ob/gyn) asked him if he was doing something. He was clueless too, but said he would pull my file when he got to the office the next day. I didn't think it was him. The receptionist did say that I was calling the gastrointestinal group. Maybe it was to see a specialist because I am at a higher risk of getting pancreatic cancer? No clue. Desiree thought they wanted to check my hiney! Maybe do a colonoscopy. Heck at this point I wouldn't put it past any doctor.

Then while I was on the phone I got another call from OHSU. This time it was the bone density clinic. They wanted to schedule an appointment with me to check my bone density levels. I go in on Thursday before my last chemo-sucky treatment to get three low dose x-rays. No poking or prodding! I like that!

So I was doing the waiting game. In the meantime, I emailed the nurse navigator, Christine and asked a couple of questions... where am I meeting Drs. Naik and Thacker? Can I get an oophorectomy at the same time and is there a good doctor? And lastly who the heck is calling me from the gastrointestinal group.

Move forward to today. I get out of work (by the way I was having leg pains so I took two more ibuprofen - did the trick) and I have two messages on my phone. The first was from a dermatologist. And the second was from Maryann asking me to call her to set up an appointment. However, she again failed to leave information about what clinic and what doctor. This was getting very frustrating. So while sitting at Aamco to get my care read (check engine light went on... more later), I called the OHSU Breast Center to see if I could get a hold of Christine to find out who the heck keeps calling me and why. Amanda at the clinic says that when a department gets a referral, they must call the patient within 48 hours and if they didn't get anyone, they have to call again. If no answer, the third point of contact would be by letter. Sheesh, I am going to get more harrassing calls? In any case, I went to Becky's to pick up the girls and that's when I got a call from Christine.

Answer to Question 1. I only have to go to one floor and Dr. Thacker will come and see me. Christine said that she's on rotation on that floor and that if I need more time with Dr. Naik, then I can take my time. I have a set 15 minute appointment with her. Then at 2p it's with Dr. Thacker. Okay, that's good. Question 2. Christine said that I would have to talk with the two surgeons to see if they are comfortable with a third doctor doing an oophorectomy on me. That's a lot of surgery at one time (I agree). But I want to throw it out there. As for talking with a GYN oncologist or gyn-oc, someone will call me from the Breast Center to set up an appointment for that. Question 3. Christine said all these calls are coming from Dr. Samson the genetic counselor because of my BRCA2 results. I figured that was the case, but no one ever told me they would deluge me with all these doctors. I asked her how urgent it was for me to be setting up these appointments. There are just way too many right now. Christine said that it's for preventative care and that I can do them before surgery or I can do them after surgery. She said that it's not imparative that I have to do them right away and that I can take my time. She just said that because of my positive test, the doctors just want to see me. All I can see is "I want your $50 co-pay and then just tell you that I don't have to see you for another 5 years when you turn 40." I know they mean the best for me, but with all the other crap I have to get through, give a girl a break. Christine said she knew that there was a lot that I was going through right now and I didn't have to jump on everything. Heck, I may want to talk to a different dermatologist. She did say that the gastro clinic was for my increased risk of pancreatic cancer. I said, okay. So what I plan to do is get through this last round of chemo and my surgery before I start on the next process of this preventative care. It's not like I should have pancreatic cancer now. The PET scan showed no cancer in any of my other organs, and with having neo-adjuvant chemo-sucky, the cancer should not have spread to any other organs. So Christine agreed with me to just wait until I am more comfortable with where things are headed. She said that the doctors are just going to go over my increased risk probabilities... duh.

So back to my car issues... (will it EVER end?) My check engine light came on a few weeks ago on my way to chemo-sucky. The car started to ride rough, but only when at stop lights or idling. Then the light went out for a little bit. Then it came back on. At first we thought that there may be water in the gas. Nope. It wasn't that. To make a long story short, I took it in today to get the car error code read. PO302 with a cylinder #2 misfire. They wanted to take my car apart, but I said I wanted to talk to my husband first. Actuallly, I wanted to talk to my brother in law, Chris. So it looks like I will be driving it down to Albany this weekend so Chris can take a look at it. It could be wiring, coil or an injector. Who knows. Just pray that it's not overly expensive.

Fingers and toes still tingly.

Here are some pictures I meant to post earlier:

Me and funny man, Jon. Look, we're twins!

This is what my port looks like when I've got chemo-sucky going in.

If I remember, I'll upload a picture of my port without a needle stuck in it. In addition, I've got a picture of my $6000 shot (of which I now waste $2,000 of it)!