2nd infusion today

This has been such a long week.. it just seems like it has been going on forever. I think it's because I'm so tired. I still haven't had any major side effects from my first infusion or the oral chemo. I cut way back on the anti-nausea drugs this week, but got back on them yesterday and today in case I need them after this infusion.

I finally found some cute scarves and head coverings yesterday. I bought several that have UV protection in the fabric and I've tied them like pirate caps. Yesterday I was at SCCA and tried on some wigs. I couldn't help but laugh, they looked so funny! There weren't very many nice ones... most were super short and none were in a color I really liked. I did find a platinum blond one that was longer, but I'm not sure about how it would look. I asked the gal to hold onto it though. I'm going to go over to the UW and see what they have next week. I have a feeling that if I want to get a really nice wig, I'm going to have to go to one of the wig stores. I don't want to spend $2500 or anything, but I would like to get something that looks nice for the times when I want to wear one.

Day 5

I am very surprised and pleased that I've made it to today with no noticible side-effects. I was warned that the first week would be pretty hard and I'd be feeling pretty crappy, but I feel just fine. I've had no nausea to speak of, although I have been dillegent about taking the anti-nausea medication on a regular basis.

I even managed to survive a fairly busy weekend. I did a little gardening.. mostly cutting back blackberries that were in the way of my peas. My mom and I practiced tying scarves and we made turbans out of t-shirts.

Other than being tired, I am doing well.

1st dose completed

Well, I'm feeling pretty normal so far. At least as far as the chemo goes. I definitely feel like I had some sedation drugs today.. a little woozy. The worst part at the moment is that when the port was placed, the surgeon went through the jugular vein (I was expecting the subclavian) and so my neck hurts. Plus, it's just super attractive, I have to say.

My aunt called me last night and she was so funny. She said I should name my port. Now, I am not the kind of person who usually goes around naming inanimate objects (the Rat Patrol aside), so I wasn't too keen on the idea. However, after seeing the port this morning and the fact that it's purple, I can announce that the name of my port is the "Giant Purple People Eater." So, Aunt Gayle, there you go!

I am planning on going to work in the morning and hopefully will be attending a BBQ for a couple co-workers who got accepted to medical school and are heading back east. My sister will pick me up if I don't feel up to it and my friend will drive me home if I do. At the moment, I'm making potato salad.

Naturopath visit

The naturopathic clinic I went to today is the one that the Swedish cancer center works with. It was actually on my list of reasons to go to Swedish instead of SCCA. Luckily I can go to SCCA and still go to this naturopath group!

We talked a lot about various interactions between chemo and supplements and about ER+ BRCA and various supplements. It was a really great visit and I'm very relieved and a lot less confused. I feel like I'm on good supplementation for the first 12 weeks of chemo and we will make adjustments for the 2nd 12 weeks when I switch drugs.

This makes me feel much more calm about Thursday and beyond.

Pharmacopia

I just got a call from one of the pharmacists at SCCA who was reviewing my med list. I have been warned against flax seed and CoQ10 for the rest of my life. I've read such conflicting reports about flax seed and ER+ BRCA.. there are some physicians who say it is ok because flax contains phytoestrogens and others who say it's not ok.

I did some searching around on the internet for naturopaths who work with cancer patients and made an appointment for tomorrow at Northwest Natural Health. I'll bring in all my info and see what they say.

It's Monday already...

Last night I was putting pills in my pill-box for the week ahead. No more supplements, at least until I meet with the nutritionist and find out what I can take and what I can't. The last pills I put in were for Friday, Saturday and Sunday and I was holding three blue pills of Cytoxan in my hand and just staring at them. It's hard to commit to something that is supposed to help me but at the same time has the potential to make my life hell for the next 12 weeks. As I put them in the box, I realized that they look like SweetTarts only thicker. That made me smile, realizing that the juxtaposition of a SweetTart is much the same as a chemotherapy pill.

Today I printed out some articles from the Mayo Clinic about how to manage some of the chemo side-effects. I also signed up for a class at Tacoma General Hospital, "Nutrition and Cancer: Separating Fact from Fiction." Hopefully it's worth the $20. Actually, what I'm hoping is that since Multi-Care is affiliated with SCCA, I can get a discount, but $20 isn't so bad to spend. It's for the dinner mostly.

Starting tonight, I am going to try and come up with a good regime for before bedtime. What I usually do is fall asleep on the couch, realize I need to be in bed and drag myself off. What I want to do is make sure I have some food together for the next day, and also start a nightly self-care ritual that includes lots of moisturizing.

I have also read somewhere that caffiene should be avoided while on chemo. Or, if not avoided, then limited. I may ease back on the coffee.. not that I drink a lot of it anyway, one travel-mug in the morning. But there are days that I supplement with a mocha or 2. I may also switch to tea. Tea makes my mouth dry and makes me more thirsty and I'm supposed to start drinking 2 liters of water/liquid a day. Here's the interesting thing though... if I decide to cut out caffiene completely and switch to tea, my only option for caffiene free tea is herbal tea. This goes back to the supplement question. I will add that to my list of questions for the dietician. Maybe I'll just drink peppermint tea. It's good for an upset stomach and it eases nausea. Pepperment and ginger... that would be a good combo.

I was out looking for scarves this weekend. I found a couple cheap ones at Ross. I tried them out at home, but I can't figure out what to do with all the excess material. It is really hard for me to learn how to do a 3-dimensional task from a piece of paper. I may sign up for the beauty class at SCCA just to learn how to tie the things. On the other hand, I'm not a big fan of frilly things and making bows and braids just seems a little silly. I used to wear head-scarves all the time in college. I just tied a knot in the back. It was very simple. Of course I also currently have the hair to help hold the scarf in place. I'm trying to find places to buy them more cheaply than I found in the TLC catalog I was given. $18 for a piece of fabric is a bit ridiculous. I may have to unearth my sewing machine and make some!

Driving

I had to drive to work today so I can go to this naturopath appointment this morning. Driving from Tacoma to Seattle is annoying at best during rush-hour traffic. It did not help that I didn't get to bed until midnight (again) and so did not get up on time.

I do plan to drive on the days I have chemo starting July 18 (after my sister goes on maternity leave). My goal is to leave home by 5:30 or 6:00 in the morning. I still have a lot of hours to make up at work. My chemo appointments will be at 5:00 in the evening and I'm hoping traffic will be cleared out by the time I'm done.

Today, though, was a hour and 15 minute commute. If I work late tonight I will get home much faster than if I leave at my regular time of 4:30.

I just need to get to bed earlier so I can get up before dawn!

Diagnostic test update

After 2 days of diagnostic testing involving IV contrast and a blood draw, my poor left arm is shot to hell. I suppose the port will be a good thing for just this reason.

I had the MUGA scan on Wednesday and it shows my heart function to be normal. Why am I not surprised!

The bone scan does not show that any cancer has moved into my skeletal system. However, it does show degenerative joint disease in my ankles, low back (L-5) and clavicle-sternum joints. I am not at all surprised by my ankles and low back, but I don't get the clavicle thing.

The CT scan is fairly unremarkable. There are a 3 spots on my lungs, 2 on the right and 1 on the left, but they are too small to do anything about. There is no way of telling whether or not they mean anything. I'm not worried about it.. this is what happens when you get scanned from head to toe.. any little thing shows up. Anyway, we will follow it over the years, but it won't impact the plan for chemotherapy.

I also had a bood draw this morning that I have not received the results from yet. I am back at SCCA this afternoon because I still have some redness on my breast and it doesn't appear that the infection has quite cleared up yet, so it's another 7 days of Cipro.

I've picked up all of my prescriptions for when chemotherapy starts, including the chemotherapy pill, zantac, ativan, compazine and bactrim. Because I'm a little allergic to bactrim, I have to go through a desensitization and work up to the actual pills. Also, the G-CSF injections have arrived. So, I'm all set... at least for the moment.

Tonight my friend is coming over for movie night.. that will be fun

Mini-melt down

Well this was a very hard day. I realize I'm entitled to a break-down every once in a while but that doesn't mean I like it.

My thoughts lately have been that I really don't want to do this. Not that I'm not going to do it, or that I don't understand why I have to do it, or that I don't see the validity in doing it. But, I really, really don't want to.

Today when I was getting the MUGA scan done I was hit with the realization that this is now the time that I am doing this. The march towards chemo and the next 6 months has started and there's not a lot I can do about it. I managed to hold things together until the study was done, but afterwards when I was meeting with Kay, my oncology nurse and she was explaining about all the side-effects and all the drugs and this and that, I just got completely overwhelmed and I couldn't help from crying. I made it through the session though but asked if I could just stay in the room for awhile. I somehow even managed to convince her that I can give myself a shot.

I realized that I really couldn't go to work this afternoon so I called my mom and asked her to come pick me up. I spent the afternoon at her house and had dinner and now I'm home still feeling a little fragile, but much better.

One of the prescriptions I was given today was Ativan and I've started taking it. Hopefully that will be enough to calm the anxiety and get through the next week.

Tomorrow I get the Bone Scan and CT Scan done.

Chemo

Well, I start chemotherapy on the 19th, right after the port is placed. The next 2 days are going to be full of diagnostic tests and whatnot. I have decided to enroll in a Phase II non-randomized study.

The first 12 weeks will consist of weekly infusions of Adriamycin (doxorubicin). I will also be taking oral Cytoxan (cyclophsphamide) every day. In addition, I will be injecting G-CSF (filgrastim) 6 days a week to help keep my white blood cell count up. I'll be doing the injections at home.

The second 12 weeks will be just a weekly infusion of Abraxane. This drug is not currently FDA approved for early stage breast cancer like I have, but has shown good results and in some cases better results as the Adriamycin.

I'll also be getting a couple anti-nausea meds to take home as well as taking bactrim to stave off any pneumocystis pneumonia. I'm sure I will also be taking calcium and vitamin D supplements, but I haven't met with the nutritionist yet.

I'm getting nauseated at the thought of all of this!

It's time to be overwhelmed again

First things first. I called the paging operator yesterday before I left for SCCA to lodge a complaint about not getting a call back. I spoke with Patient Relations who will also pass this issue to the "Quality Liason and M.D. Coach" person. Dr. Calhoun did tell me that the paging operator would page the resident, who would page her and she would then call me. Obviously this did not happen and whether the fault lies with the operator or the resident, I do not know.

Dr. Calhoun determined that I have a mild infection. She put me on a 7-day course of Cipro and seems confident that this will clear things up. After that appointment, I had my blood drawn. By the time I was done, I was very late for my oncology appointment and ended up waiting almost an hour before I saw my oncologist.

Dr. Rodler and I spent a lot of time talking about what chemotherapy will entail and the different choices I have. There are not a lot of choices for women with early stage breast cancer, as far a chemo drugs go. I will most likely join one of the research studies we talked about. It's a Phase II, non-randomized trial, and I'm pretty comfortable with it. There are a lot of tests and appointments I have to do in the next 2 weeks though, including:

1. MUGA scan to check my heart pumping function
2. CT scan of chest and abdomen
3. Bone scan
4. Nutrition consult
5. Placement of a port-a-catheter. I will get this done on the day I start chemo.
6. Lab work

I also need to get a consult for a wig, which I think I can do at UWMC.

Is it any wonder I woke up at 2 am! At least I feel better, physically that is.

I hate being sick

I'm feeling pukey again. Plus I have the chills. No fever though, that we can tell, but we don't have a thermometer either. I'm leaving in 20 mins. for SCCA.

well, crap

I definitely have an infection going on. There is a spot in my incision (the axillary dissection site) that is red and infected and my entire breast is warm and pink and swollen. I have a call into Dr. Calhoun's nurse and I'm just waiting to hear back from her.

So this has been my morning so far:

-I got up at 5:00 and decided there is definitely something going on with my breast
-I took a shower
-I called the paging operator at 5:45. Now, both Dr. Calhoun and her nurse have informed me that Dr. Calhoun takes her own calls. I was instructed to call the paging operator and ask for her and she would be paged. However, when I called the paging operator this morning, I was told that she is not on call for herself and that Dr. Someone else is on call for her and he would be calling me back. Some resident, I assume. I explained that Dr. Calhoun told me that she takes her own calls, but the operator said no. Now, I wasn't going to have an argument with the paging operator. What pisses me off is the fact that it's 8:45 now and no one has called me back. I will be having a pointed discussion with Dr. Calhoun today when I see her, that's for sure.
-I cleaned the cat box and in the process, stepped in some cat puke and tracked it all around the kitchen before I realized what was going on. Luckily I wear Crocs slippers, so cleaning them was easy, but I was highly annoyed at the cats, not only for the puke, but they keep peeing outside the cat box and I'm changing the pad twice a day (I use puppy training pads all around the cat box).
-I got to work at 7:15 and my co-worker and friend who is also an RN took a look at my breast and agreed that I definitely have something going on
-I headed downstairs one floor for my first PT appointment at 7:30. My physical therapist is really wonderful and I'm very happy with her. She exclusively works with breast and gynecological cancer patients. We talked about my history and what the future plan is, but we did not do any therapy today. She also examined my breast and placed her own call to Dr. Calhoun's nurse.

Now, I am just waiting for the return phone call to find out what time they want me over there. Oddly enough, I feel much better today than I did yesterday. I did check my temperature last night and it was up a little bit at 98.9. I normall run low, about 97.7 or 97.8, so it's a little high for me. I don't feel that warm today though. I am starting to have some sharp pains in the axilla area, so I think this infection is starting to spread a bit.

That's it for now. More updates later.

Next phase

I will be starting PT on Thursday. Luckily, one of the therapists recommended to me is in my building, so I don't have to go anywhere except downstairs. I've been trying to do some of the exercises that the nurse gave me after the drain was pulled. Let me tell you, it's a little painful. Ok, it's a lot painful. I'm sure at some point I'll be able to make a "snow angel," but not today!

Also on Thursday, I am meeting with my medical oncologist to discuss the chemo and treatments. I have a whole list of questions for her about this process. I'm not exactly sure when the chemo will start since one of the things I remember from my first meeting with her was that she will have me get a bone scan and CAT scan before starting any treatment.

I am not feeling well today and am really wishing I had stayed home. I'm freezing cold and have been eating saltine crackers which are not really helping. I may go home after a meeting I have this morning. This means taking the bus and probably calling my mom to come pick me up at the Tacoma Dome.

I'm also having weird hormone things going on since my surgery. With the PCOS, I've been basically pre-menopausal for the last 3 years with no real periods, just spotting on an irregular basis. But the day I came home from the hospital, I had started a period that lasted for a week. Another one started on Sunday or Monday. I don't get it.