I had extra films done last week so I wouldn't have to have them done yesterday. Except, I had to have more films done yesterday. My case is "complicated." Between the deepness of the tumor cavity and the fact that they are also radiating above my collar bone is making for difficulty with the angles.

I finally got done at 5:00, got dressed and was trying to leave when one of the techs introduced me to one of the nurses. I told her it was nice to meet her but I had already met with another nurse last week and didn't think I needed to see her as well. She said that the doctor covering for my doctor (who is out this week) needed to see me after the films. I told her I didn't have time and had to leave, as my carpool is at 4:00. Luckily, I have an understanding sister. She glowered at me and tried to get me to stay, but I told her the doctor could see me another day and left.

I called this morning and left a message, apologizing for leaving and stating that I would be happy to see the doctor before my radiation appointment anytime the rest of this week. I didn't receive a call back by lunch-time, so I left another message reiterating the fact that I wasn't going to stay after my scheduled appointment, but if she wanted to see me today, I needed to know because I'm at work. Still no call back, so I guess they don't want me to see her today. whatever!

The only good thing that came out of it was that my appointment times got switched from 3:45 to 3:15. This means I won't have to come in early to try to get in before my appointment so I can pick up my sister at a reasonable time.

Today should be a better (and quicker) experience.

I recently received an email from my cousin who was responding to a message I sent out to friends and family providing a treatment update.

She very simply said, “I hope you are better now.” I thought about this for a long time, and I’m not sure I can even respond in a way that makes any sense.

I can no longer say, “oh yes, I am better.” Or, “no, I’m not better.” Or even, “I wish I was better.” It’s much more complicated than that. Being “better” depends on where I look back at various times over the past year. “Better” also has different components to it, the 3 main ones being, “better physically,” “better mentally,” and “better emotionally.” If I am “better” or “not better,” what part of “better” am I talking about? I will say that I am “better” in all 3 components than I was on November 28, my last day of chemo. But, am I “better” than I was in June before chemo started? Am I “better” than I was in May when I had surgery? Am I “better” than I was in March when I was diagnosed? It’s hard to say. Being diagnosed with cancer is a life-changing event for sure, and some of those changes include an intense period of growth that is still in process. All areas of my life are affected, from the emotional to the mental to the physical to the spiritual and to other parts that I can’t even recognize yet. These are things that probably wouldn’t have happened had I not been diagnosed with cancer. So, am I “better” now? Perhaps I can only apply “better” to how I am today as compared to yesterday. If that’s the case, then all I can say is, “I’m about the same.”

Well, my break from SCCA is over, unfortunately. I had my port removed this past Friday, which is a huge relief!

I also started the radiation process today. I went in for the CT and simulation, where I was positioned and tattooed. I should be starting in about 2 weeks and will hopefully finish up the first week in March.

Happy New Year to everyone. My New Year's Eve was quiet.. I went to bed early and woke up in time to see the Space Needle light up. Happily the local fireworks did not upset my dog. She gave a little woof at the larger booms, an M80 I think. Otherwise, she and the kitties slept through it all.

Here are some pictures from the snow and from Christmas:

One thing I've discovered about being in active cancer treatment is that I am so involved in the treatment, and dealing with the side-effects that when other stressful situations occur, my frustration level almost immediately rises to red-hot. This happened over the summer when I had to deal with the plumbing issues and not being able to get a hold of the property manager. I also had a medical bill issue from February when I underwent the biopsy, and the billing department at the pathology lab were basically being idiots and I was biting my tongue trying not to tell them how I felt. Luckily I managed to survive both situations, but it was a lot of work and took up too much of my already low energy.

At present, I'm on a break from the SCCA and my biggest concern regarding my treatment is remembering to take my pills 3 times a day. No more skipping because I'm too tired at night, as there is medicine I'm taking that I can't just skip a day. So, when I was faced with a stressful and challenging situation, I handled it much better than I did the situations over the summer.

My very challenging and heart wrenching situation over the past several weeks has been the health of my 19-year-old cat, Kitten. It's a very difficult line between trying to keep her healthy and overdoing treatments that are going to impact her quality of life.

Over the past week or so, Kitten started getting weaker and weaker and was not very interested in eating or drinking. I think she was really having a hard time adjusting to losing 5 teeth, even though her mouth was completely healed. Finally, on Tuesday the 23rd. I called my vet at home. He is on vacation until January 6, but he gave me his home phone number in case I had concerns about Kitten. So, I called him and we met at his clinic. Kitten was dehydrated enough that she needed an IV. The vet also gave her several steriod shots to stimulate her appetite. I brought her home and gave her some food which she ate right away. I felt that she was going to be able to turn things around and would be stronger by the next day. However, as the day wore on, Kitten got weaker and weaker to the point that could no longer stand up. It's like her legs were boneless and she would just crumple when I tried to stand or sit her up. Since she was unable to use the litter box, I kept a puppy training pad under her. I was up all night making sure the pad was changed as needed and trying to feed her. I was still hopeful that the medicine would kick in and she would get better. But, at 4:00 am she had a seizure and afterwards I knew that she would not survive the day. I called the vet again and we said goodbye and now Miss Kitten is young and free and playing with Simon, who was always her best friend.

I'm getting my port removed on January 2. Bye, bye giant purple people eater!

Ok.. tamoxifen. Can I just say muscle pain from head to toe? good times. Drugs are not really helping, although I'm not taking any narcotics. And, I don't want to. I can function, just really slowly and grimacing.

My doctor thinks the pain will diminish over time. We'll see. I hope so, because 5 years is a long time to live feeling like I've worked every muscle too hard in the gym.

Kitten came through her surgery with flying colors. She's a little more fragile than usual, but she's all about eating, so I think she'll be just fine.

Zusa has osteoarthritis in her hips. Not sure about her shoulder yet, but she's on anti-inflammatories and they are working well so far. Still waiting for that heated dog bed though. I Hope it comes tomorrow before the weather gets really cold.

In other news, I'm dealing with a lot of muscle pain all over my body. Not sure if it's the tamoxifen or what. Actually, I think it must be. I spoke with the SCCA pharmacist today who was no help at all. I'm so shocked.

I have a call into my primary care doctor about the lower leg edema. My left leg is more swollen than my right leg, although it doesn't hurt and isn't showing signs of a clot or infection. My oncologist doesn't really know anything about using diuretics, so I think that will be best managed with my doctor in Olympia.

I sent an email to my oncologist earlier this week because after doing some research about tamoxifen on the web, I discovered several studies that showed premenopausal women losing quite a bit of bone density on tamoxifen. Since I'm going to be on it for 5 years, I don't want to find out down the road that I have osteoporosis. I asked about getting a baseline bone density exam (DEXA scan) and a Vitamin D level, both of which she agreed to. It's weird though, that these things wouldn't be done automatically. Anyway, it just goes to show that you really do have to be your own advocate when it comes to health care. I can't imagine going through this without some knowledge of medicine. Even though I don't have an oncology background, I understand the basics. And, I work with a bunch of nurses, so that all helps :)

It was very strange to look at my calendar for this week and see no medical appointments. Not one. Not only am I done at SCCA until January, I've also scaled back on physical therapy to every two or three weeks. It's a weird feeling when life has become one appointment to the next to suddenly not having any. I almost feel as though I've lost some part of my identity...I've gotten used to the attention. I think it must be a difficult switch from active treatment to follow up care. I'll find out this spring.

Yesterday the oncology nurse called me to talk about removing my port. She was giving me instructions, but then asked me if I was sure I wanted it removed. Uh, yeah. Why is this hard to understand? My oncologist told me I could keep it in for another year if I wanted. Why would I want to do that? Are they anticipating cancer coming back so quickly? Is there more chemotherapy in my future that I'm not aware of? Or, are they so used to little old ladies with horrible veins that they feel the need to try and talk all of their patients into keeping the port? Well, I'm having none of that. I want the thing out of my chest, for many reasons, including the fact that it represents 24 weeks of not-so-fun times that I just went through. So what if I might have to get an infusion every three months? Give me a damn IV. My veins are just fine.

I have decided against participating in the research study that I looked at last week. I want to get the Zoladex shot and don't want to take the chance that I might be randomized into an arm that doesn't include it. However, at this point I have to wait and see if my ovarian function resumes before they will start giving me the shot. That means getting my estrogen levels checked every couple of months and/or getting a period. I haven't had one since May and I certainly haven't missed it! One of the things that has to be watched carefully with the Zoladex is the potential of bone loss. There is another study that looks at three bisophosphonates which are drugs that help prevent bone loss. One of the drugs is Boniva and another is Zometa. Zometa is given via IV every month for 2 years, but still not worth keeping the port!

A week out from the last chemo infusion and I'm still feeling like I'm getting treatment. Last weekend was hard from the standpoint of not having any energy and still feeling very weak. I'm hoping by the end of the week to have a noticeable difference in my energy level. I'm also still dealing with constant eye watering, blood clots in my nose, and my nails are not done wreaking havoc on themselves. Also, my legs and ankles are still swollen from "capillary leakage." Gotta love that. I'm wearing my Crocs today because my ankles and the tops of my feet are too swollen for regular shoes.

So I've been getting to know my vet very well lately. Not only was Mea's eye injured by her sister.. she is all better after a few days of eye ointment (fun!), but Kitten is going in tomorrow for surgery. She has a skin cancer on her neck and an abscessed tooth. Those will both be removed and she'll get a dental cleaning as well. Kitten is 19 this month, but she is healthy. Her heart and lungs are strong and she's not suffering from kidney disease like a lot of old kitties. I'm pretty pragmatic when it comes to what I'm willing to do to prolong the life of an older cat. I wouldn't do something major that would impact the quality of her life in order to eke out another year or two. But, if by doing this surgery her quality of life gets better and we don't have to do anything else, then I'm all for it. I am also taking Zusa in tomorrow when I drop Kitten off. Over the weekend she started limping when she got up from lying down. Her left shoulder seems very stiff and I think she needs some anti-inflammatories. I suppose I should mention that Kira is just fine and doesn't need to go to the vet at all :)



I have completed 99% of my Christmas shopping. I haven't got anything for my Dad yet. I did all of my shopping online this year which made it easy. Over the weekend I also got everything wrapped. I guess I got tired of the boxes all piled up in the living room. Of course, now there are gift bags, but at least it's done.

I have also done a lot of shopping for me recently. All of this weight loss has been great, but I have no clothes that fit. I've been pretty successful shopping online for clothes. Only one or two things haven't worked out.

I have to say though that the amount on my credit card is quite scary. I have been putting off looking at it, but I finally did yesterday. The nice thing is that I have a sweet check coming from Aflac this week and I will be able to pay it all off.

I met with my oncologist today for a check-up and to discuss the next step in the regimen. She talked to me about tamoxifin and all of the risks and benefits of taking it. We talked about whether it would be beneficial to stop estrogen production all together for the next 5 years. The research has shown that young women with aggressive breast cancer (that's me) have less likely recurrence of cancer than taking tamoxifin alone. Her recommendation is that I get this shot for the next 5 years.

There is an ongoing research study that compares tamoxifin to tamoxifin plus a shot to stop estrogen production. The study is randomized though, so I have chance of ending up in the tamoxifin only group. The research coordinator is going to email me the protocol and consent form so I can review them, but I'm not sure I want to risk being put in that group. There's nothing wrong with taking tamoxifin by itself, it is considered the "gold standard" of care, but I sure as hell don't want to go through this crap again and I'm willing to do what I can to avoid recurrence.

I'm so glad that I don't have to go back to SCCA until January!

Oh, and I have to share.. I just recieved these scarves that I ordered as an end of chemo present to myself. So pretty!

Well, I can't believe it.. I'm done with chemo! I'm very happy about that. Things were getting to the point where I was getting so burned out on going to SCCA every week that I was ready to snap someone's head off.

During the second to last week, I was having a lot of frustration and anger towards my oncologist and case manager. Instead of letting the anger go so I could approach my issues more rationally, I was feeling very emotional about them. Because of this, I met with the chaplain and told her what my issues were and that I just needed to let them go and get back to Center. She was really wonderful in helping me do just that. Now I feel like I can approach my oncologist about my biggest concern (not diagnosing a potentially serious side-effect at my follow-up visit and that the case manager is not tracking these trends) calmly and without being accusatory. I realize they are short-staffed in this area, but that is not an excuse for letting patient safety issues slide.

All of this is part of the reason why I refuse to go back to SCCA for the rest of the month after tomorrow's follow-up appointment.

On my last day, which was last Friday, I was fasting before my labs were drawn and I had forgotton that I wasn't coming in at 7:00, but at 11:30!! I got in early and then had a nice lunch at the little cafe. I have to say, they make a super yummy mushroom/cheese/potato soup. In celebration, I wore my "Hey Cancer!" t-shirt, which didn't make it easy for the lab tech, but I really didn't care!! At the end of my treatment, 5 or 6 of the nurses and tech staff came in and put on funny glasses and sang a funny song all while blowing bubbles. They took a picture of me and Jane, which is hilarious because the bubbles are going everywhere.



One of the questions that I need to bring up on Friday with my oncologist is when the port will be removed. I find it odd that no one has mentioned removing it (another little bit of frustration) and I have a feeling that if I don't mention it, she won't either. I might not say anything and just see what happens. I can always "suddenly remember" in an email to her later. One thing is for sure.. I'm not doing anything about it until January!

I met with the radiation oncologist Monday to start that process. They wanted me to come in tomorrow to do a simulation under CT, but I've put that off until January as well. That's mostly for insurance reasons.. I want to be sure I use up all of my out-of-pocket co-insurance for next year. A two-week delay in treatment isn't going to matter in the grand scheme of things. The daily grind of radiation is sort of looming over me like a black cloud.. that is going to be hard for me. But the radiation tunnel is much shorter than the chemo tunnel, even if there are more treatments.

On Thanksgiving my brother and I posed as twins for pictures. Ha!

Almost at the end! I can't believe it. The past 6 months have gone so fast, yet so incredibly slow at the same time.

The good news is that my hematocrit went up 4 points to 32% after taking last week off. I was able actually walk and breathe at the same time last week. It was amazing to feel good (at least in that respect).

I didn't get much of a dose reduction.. only 10%. They did some weird reduction in the numbers they use to calculate the dosage, so it might actually be more than 10%, but looking at the actual dosage difference, it's only 10%. I have to say that I don't think that's going to do much as far as alleviating some of my worst symptoms (anemia, neuropathy). Already I'm feeling more short of breath when walking short distances.

The newest issue is "capillary leakage." I've gained 12 pounds in excess fluid in my lower legs and ankles. I was put on a diuretic Friday, which is certainly making me pee more.

Ok, so anemia, neuropathy and now edema. Good times. Not to mention the constant eye watering and the nail issue. Speaking of which, I had to cut off another nail on one of my toes over the weekend.

I have to say, I'm getting a little annoyed with my oncology team. First of all, my oncologist has never talked to me about this 30 pound weight loss and then sudden 10 pound weight gain. I mean, shouldn't she have checked out my legs at my last appointment on 10/31? It was the infusion nurse who took the time to ask me questions about my water intake, how much I was peeing, whether my ankles were swollen, etc. She diagnosed the issue and then called my oncology nurse to say that I needed a diuretic.

When my oncology nurse called me later in the day to discuss the diuretic, I asked her if I needed to stop taking any of my other medications. She admitted that they aren't really very good at medication managment and told me to contact my family doctor about it. No one has told me how often I will need to come in for blood tests after the chemo is finished. I am on a very low dose of this medication and it's going to take awhile for all of the fluid to go away. This medicaiton tends to remove potassium and that has to be checked regularly. My family doctor also said my blood sugar has to be monitored regularly as well.

What's more, when I asked the oncology nurse who would be handling the long term management of the medication I'm taking for hot flashes, she said they should go away after chemo. Really? That's funny because my oncologist told me that taking the tamoxifan (which I will be doing for 5 years) will put me into menopause. Furthermore, I was already experiencing peri-menopause symptoms for 2 years before I was diagnosed, including hot flashes. I can no longer take the supplements I was using for them because they contain plant-based estrogens and the just isn't enough research to show whether or not they could contribute to a recurrence they way taking hormone pills would. So, I'm stuck taking a nerve medicine that for some reason reduces hot flashes as well.

It's all very frustrating, and I'm going to have a lot to talk about with my oncologist at my next visit!

No chemo this week!

It's really hard to say if taking a week off has made an improvement in how I feel. Working a full week has taken its own toll, so I think it's pretty much a wash. By Friday night, I was wiped out and fell asleep on the couch while trying to watch last week's CSI on the DVR. On Saturday I had an eye appointment in Olympia that I was dreading.. not because of the appointment, but I was so weak and wobbly that I wasn't sure I would even make it. I was in bed by 7:00 and even forgot to feed the dog her dinner :(

I felt much more recovered on Sunday. My mom came over and did some cleaning and laundry and my sister picked up some things at the store for me.

I've noticed more intense tingling in the tips of my fingers on both hands. I had a hard time putting in my earrings this morning. This could be a deal-breaker as far as chemo this week. We'll see.

I have tomorrow off, so hopefully I won't be as wiped out this week as I was last week.

I wandered to the dental office across the hall from my office this morning to get some ideas of how to deal with my swelling gums and bleeding when I brush my teeth. It turned into an exam, a new dentist and some dental products that should help and give me some relief.

My breathing feels a little better today.. I guess that makes sense - it's Thursday. I feel better just in time for another round of chemo. I'm glad I made the decision to not get chemo this week and hopefully I can build up some strength to get me through the final 3 weeks.

I realized last night that I will have to do all of my Christmas shopping online this year. I'm not going to trust that my red blood cells will miraculously multiply as soon as I'm done with chemo and give me enough energy and strength for that kind of shopping. I've put out requests for Christmas lists to my family so I can get started.

Some people have mentioned that I should have a "no more chemo" party when I'm done with chemo. I think I'm going to wait until I'm done with all my treatments and have a "no more treatment" party instead. Or maybe it will be an "I'm in remission" party. Either way, waiting until next spring makes more sense to me. I can't fathom having a party right now, and with it being holiday season.. it's just too much!

I had a very bad night earlier this week when my cat decided to bolt from the living room to the bedroom and used my sore and explosed toe as part of her pathway. It was the last straw in a day where I was really struggling to breathe and just do the things I needed to do. And trust me, I don't do more than what I absolutely have to!

I had a good cry and then felt better, but was still upset enough to want to call off chemo all together, and would of if it hadn't been so late in the day.

The next day I called the research coordinator and told her that I needed a break this week from chemo, AND that I wanted a dose-reduction for the final 3 weeks. Hopefully this plan will negate the need for another blood transfusion.

Yesterday I used the Dial-A-Ride system here for the first time. It worked out really well, even though I had to cross the street (on a pedestrian bridge over the street) to the Health Sciences building for a class.

Now that I have the disability placard for my car, I've been driving to work every day. It's so much easier on me physically than taking the bus. I'm able to park in one of the handicapped spaces in my building. And since my sister is back at work (reluctantly) after her maternity leave, we are carpooling again, so that makes driving even easier.

Good news regarding my toe and thumb.. they have finally healed on the surface and I don't have to wear the bandaids anymore.

My hct keeps going down. It was 28 on Friday. I saw my oncologist on Friday and there was lots of talk about dose-reduction, or skipping a dose. Ultimately, it was decided to give me the regular dose per the study protocol. Since the darbopoetin shot does not seem to be doing any good, they increased that dose by 25%. That is a very painful shot!

I am really feeling the effects of the anemia now. It was a hard weekend, but again, my sister pulled through and did a bunch of shopping for me. I've been talking with my oncology nurse about skipping this week's chemo... I know my hct is just going to keep dropping. I am skeptical that skipping a dose and doing a dose reduction will make much of a difference in the grand scheme of my anemia, since it takes so long for red blood cells to reproduce. My nurse told me that "it usually has a profound effect." However, I have bucked all the "usuals" with Abraxane. I feel like I am suffering more now than I did over the summer. Although, my doctor is pretty adament that the anemia itself is a result of the previous chemo. The fact that I'm still getting chemo, certainly isn't helping things. I have a call into the research coordinator to disuss this dose-reduction further. My doctor did say that she would prefer to go this route than do another transfusion. I don't really care, as long as it works!

After the chemo infusion on Friday, I went to Ballard to the auto licensing place and got a temporary disability parking placard. I've also been in contact with the disability services office at the UW about using the Dial-A-Ride service to get to the hospital instead of taking the shuttle. Dial-A-Ride will pick me up right outside my building and I don't have to walk those 3 blocks to the shuttle stop.

There is a possibility that Aflac is not going to pay me for this round of chemo. My policy states that they will pay for each chemo treatment that has a cost associated with it. SCCA is getting my chemo at no charge because it's a research study. However, there is still a cost associated with getting the chemo into me.. the infusion, etc. So hopefully that will work out. There is also a provision for investigational treatments, although I'm not sure this falls under that guideline. I just have to submit everything and then see what happens and take it from there.

Baby Ben came over today with his mom and grandma to do some housework for me. Dishes, vacuuming, laundry and dusting got done today. I really need to think of something nice for my sister when this is all over because she is just awesome.

This has been another really hard week with side-effects. My hands and feet are becoming neuropathic and it's difficult to write and do anything that requires fine motor skills. My eyes are watering constantly and the skin under my right eye is getting irritated. The big issue though is this weakness I've been experiencing since about mid-week. My shortness of breath is better only because I am now forced to move extremely slow. My knees feel like they are going to give out on me and my thighs and arms just feel like jello.

I'm not sure what I am going to do about work. I mean, I can work, but getting there is an issue. Unfortunately it's not work I can do at home. I just need to decide if I'm going to take the bus or drive. Tomorrow I'm going to ask my doctor about getting a temporary handicapped parking placard. I probably should have done this a few weeks ago, since the state is slow about these things, but I wasn't expecting this weakness and I figured the anemia was going to get better after the transfusion. Speaking of which, my hematocrit dropped another point this week to 29.

On Friday while I was in infusion, the oncology PA came down to look at my nails. She was going to cut back my right thumb nail, but instead of lifting it off the nail bed, she just tried to jump right in, which of course hurt. Later, at work, I managed to get most of the nail off with my little clippers. There was a little bit of pus in the nail bed, so I've been putting silver gel on it with a bandaid and it's healing nicely. Both the PA and my infusion nurse suggested I get some extra sleep this weekend, so I did take some ambien Friday night and slept almost 12 hours and after I was up for a couple hours, took another 4 hour nap. It was a bit harder to get to sleep last night, but I did manage about 9 1/2 hours. I'm pretty wiped out for the little bit of housework I've done today and will most likely nap after (or during) the Seahawks game. Go Seahawks!! (please win!)

Here's another picture of Ben.. He's just so freakin' cute and he's seriously stylin' today!

I found out today that several people in the department I'm working in have inquired about donating shared leave to me. This is such a nice gesture and completely unexpected. I can't seem to build up any leave at the moment...I'm always using it up and at times have to take leave without pay.