The Bad News Post

I have moved into the final stages of breast cancer and right now it appears that chemo is no longer working. Joe and I have let our parents know this weekend and will start the process of letting our boys know this week so that they aren't surprised when the time comes. We do not know yet whether the timeline is weeks, months, how many months, etc. but will be talking to my doctor this week to learn more.

Joe and I ask that you pray for us as we take care of end of life arrangements. Please pray for our extended families, who all live out of state. Please pray that my pain level is reduced and that the swelling in my liver would go down as it is causing me much discomfort.

Please pray for good solutions to the boys' education during this time. I would like to be able to homeschool them as long as possible during this time period because we get to spend our days together, but a solution will need to be found for when I'm no longer able to manage the homeschooling.

This is the beginning of the end. I'm kind of numb right now.

Long Time, No Blog

It has been a long time since I updated this blog. Partially, because I am on Facebook and tend to update on there as big events happen, and partially because cancer is just a part of my day-to-day living now.

The Aromasin didn't work, and so I moved on to a once-a-month-injection drug called Faslodex. I felt fabulous on Faslodex, which, for me, meant it wasn't working. The better I feel on a drug, the less likely that it is working.

My scans after six months on Faslodex showed that I had a few very small spots show up on my liver. So, in April of this year we started once-a-week chemo injections of Navelbine. After a bit of a rocky start, a reduction in dose, and the realization that I was going to have to give myself injections of Neupogen three times a week to keep my immune system going, we now have a rhythm going in my treatment routine.

The side effects of the Navelbine have cramped my lifestyle.

• I have neuropathy in my feet and my hands--tingling, loss of sensation, and pain to the point that it travels up my arms to my elbows and up my legs to my knees. I take Neurontin three times a day to help with that. I can tell when I've delayed taking a pill!
• My hair is thinned to the point that I am frustrated, but not to the point where I wear a hat. My hairdresser is creative with the way she cuts my hair, where my part goes, etc. She has a co-worker and friend who is going through chemo now, so we spend a lot of time talking about cancer while I am there. She is a gem.
• The Navelbine has built up enough in my body that I am dependent on pain medication most days. Some days I wake up and can barely make it down the steps to go take something for the pain. Some days I wake up feeling great and don't take pain meds until noon or later, so I'm hoping that means I'm not addicted to them yet.

The side effects wax and wane, so my schedule for each week has to follow my likely pain level.

Sundays are my worst days. I'm usually curled up in a ball on the couch, in pain. Some times my mind is blurry, either from the pain meds or from trying to think through the pain. We tend to have family movie days, or Joe takes the boys out for a bike ride or something fun while I hang out in my jammies. I used to try and get ready for church, but by the time I was showered and dressed I was so worn out and achy that I'd just end up on the couch in my church clothes. I recently gave up. I called in a prayer request last week to a friend to share with the church: If I'm not there, I'm at home in pain. Please pray for me! The pastor brought communion over this week and said that they would try to stop by with communion weekly if need be, until this is over.

Mondays are a bit better, but still painful. I have to take Neupogen shots on Sunday and Monday, so sometimes I feel the after effects of that.

Tuesdays are post-Neupogen days, but *definitely* better than Sundays. As long as I take my pain meds as scheduled, I'm doing ok.

Wednesdays I still take pain medicine, but I'm feeling fine when I'm on it. I take my last Neupogen shot of the week on this day.

Thursdays are either post-Neupogen pain, or I'm feeling great and start the day without pain meds.

Fridays are chemo days and of course, I'm feeling great. After chemo, the boys and I tend to run errands. Friday night is pizza night, and movies or tv shows via Netflix streaming.

Saturdays I feel great! I try to get as much done as possible before the coming Sunday crash.

So that is my life so far. Even on my great days, I end up taking pain medication at some point and then for the rest of the day. I never have completely pain-free days any more.

I have scans coming up on July 25 to figure out how well the chemo is working. If it is working well, we will do a couple more groups of the chemo infusion and lower my cancer markers even more (because it is lowering them). If the scans are only "meh" then we will stop the chemo because it is messing with my quality of life. We will move to a hormone-based drug instead.

I'm posting a link to this woman's blog because I think her post here is amazingly powerful.

Seeing Past What It Seems

Sigh. It looks like this drug isn't working either.

I had my infusion/oncology visit yesterday. My cancer markers are up again and I have a follow-up bone scan in November. My last bone scan was in September and at that time it was indicating that the cancer in my bones might be getting bigger in the areas it is in. The increase in cancer markers seem to confirm that. The November bone scan will be a double-check of the areas where I have the cancer (hips, left arm).

I have been on Tamoxifen, and Arimidex, and I am currently on Aromasin. None of these drugs have worked for me to keep the cancer markers low. My next stop is either a pill-based chemo drug that causes mouth sores, diarrhea, and neuropathy (numbness/tingling in extremities) or a monthly injection to help fight the cancer.

Can you please pray that we find something that works that has minimal side effects? Right now, with the exception of monthly doctor's visits, I'm pretty much living my life. The idea of having chemo side effects again isn't very heartening. I'm frustrated that the markers aren't going down. My onc says that since it isn't in my soft organs, it isn't affecting my longevity yet, but it is an odd feeling to look at our 1yo cat and know that he could outlive me, kwim?

I'm Still Here

I haven't blogged for a while, so here is a little update.

I'm still here. The Tamoxifen got replaced with Arimidex for six months, but the Arimidex still didn't make the cancer markers come down. It just caused them to plateau. So, I got switched to Aromasin, and the markers were actually down a bit at the beginning of August. Hopefully, the Aromasin will continue to bring those numbers down.

It has been about six months since my last CT and bone scans, so I am scheduled for new ones right after Labor Day. I'm still getting infusions of Zometa monthly. Sometimes I have side effects from it and sometimes I don't.

The Lupron shots, along with the Aromasin, have seriously cut back on the number of migraines I get. I've gone from 2-3 a week to 2-3 a month. That has been a blessing.

The boys and I have had a good summer together: going to the beach, relaxing and kicking back, and generally keeping our days low stress. Spiff will go back to "building school" again this year, while Entropy Boy will be homeschooled again. I'm going to miss having both of them home together.

That is the latest. I am reminded daily that I have cancer, but my goal each day is to do as much as I can and not let aches/pains/etc. stop me from living my life. I can't let little things give me a bad day, because then I might *never* get a good day. So, I have to make each day as good as it can be.

I Think I Could Eat My Weight in Curry

Well, it's a week later and I'm doing well. The migraines are slowing down and life is returning to normal.

We had Indian food last night and I just had some of the leftovers as a snack. I grew up eating midwestern food without a lot of spice to it, so I'm not quite sure why Indian food has become a such comfort food for me, but it has. I love it and so does Joe. Date night inevitably will find us at an Indian restaurant.

Here are recipes for some of our favorites:
Indian Butter Chicken (Chicken Makhani)
Three Bean Dal
Potatoes and Cabbage, Indian Style

Now you can make them at home and spice up your life!

Well, It Was Either a Reaction or a Migraine

Either way, it stank. About 4:30 Wednesday morning I woke up with *something* happening--either a migraine or a reaction to the meds. It was hard to tell which one, but I couldn't take my migraine medicine because I couldn't keep anything down. Yuck, yuck, yuck. That was about five hours I could have done without.

However, now that the magical 48 hours after the infusion have passed, I'm fine, if a little lighter on the old scale.

I don't see the oncologist for another month, at which time I'll get another infusion of Zometa. I've got an x-ray of my hip I have to get before then to see why I get pain when I wear my cute high-heeled boots. I never used to get hip pain with them, but I sure do now. If I wear flats, I'm fine, but the doctor wants to check it out anyway to catch anything as early as possible. I may need radiation there if the x-ray shows it warrants it. I guess the x-ray is better at diagnosing some things than the MRI is--who knew?

Other than that, life is going on as normally as possible. Entropy Boy and I are marching our way through ancient Greek history. Today we discussed the Iliad and the Odyssey; Joe has English translations upstairs somewhere. I should dig them out.

Tomorrow Spiff has the day off school for a teacher in-service so we'll hit Dunkin' Donuts to make the day special!

New Drugs Today

Today was my first infusion of Zometa, a bone-building drug that is also used for osteoporosis. The infusion only took about 15-20 minutes and didn't need steroids or Benedryl with it, so it was quick and easy compared to chemo. Any side effects will likely happen in the first 48 hours, so I was told to take Tylenol every six hours until that time period is over. So far, so good. No side effects. Since the most common side effects are flu-like symptoms (fever, achiness, chills), that makes me pretty happy.

So right now the game plan is for me to stop the Tamoxifen as of today. I took it less than 90 days. It just didn't work for me the way it was supposed to. I guess I have super-charged ovaries. I got a shot of Lupron last month and then got a 3-month shot of it today since I tolerated it well. It puts me into menopause while it is in my system, so hot flashes are now part of my daily experience.

In a couple of weeks I will start another drug that is supposed to help combat the attack on my bones. That will be a daily pill--Arimidex. That, combined with monthly infusions of Zometa for the next couple of years, will be my new normal.

Yes, It Is Spreading to My Bones

I saw the oncologist today. It has begun to spread to my bones. We've caught it in the very early stages--if she didn't check cancer markers each time (her colleagues don't) and if I hadn't complained about my hips hurting after exercise, we likely would not have caught it until later. I see God's grace in that.

It is in the early stages and, while we can't eradicate it, people can and do live and fight this for many years. Who knows what breakthroughs they will find in the next five years? I can say that now--I've shed many tears in the last week and have really been fighting with despair.

We'll be switching my medicines now, since the Tamoxifen doesn't seem to be working. Please pray that the medicines are effective and keep the cancer from spreading any more. Please also pray that the side effects of the drugs may be minimal.

It could be something, or it could be nothing, but. . .

I saw my oncologist today. She said that my cancer markers (one of the blood tests they run each time) are up for the first time, ever. The bone scan that we had done showed spots on my left upper arm and on my hips. My hips could be the beginnings of arthritis, but she's not sure what's up with the arm since I haven't had any injuries to it. So I'm getting some MRIs done, hopefully moving them to next week instead of the end of the month to see if that helps the diagnosis any.

The tentative plan right now is to put me into menopause with drugs and stop the Tamoxifen. The Tamoxifen was supposed to be fooling the cancer into thinking it was estrogen, but the cancer markers are up, so obviously some of it wasn't fooled. So, we'll put me into menopause to take away the estrogen and switch to another drug. Also, if the bone MRIs do show something, then I will be taking injections weekly/quarterly to fight those areas too.

That was a lot to take in today.
Please pray that this is all nothing, that the spots that showed up on the bone scan miraculously disappear, and that my cancer markers go back down. I'm tired and not ready yet for round two.

I saw my plastic surgeon as well and got the last two drains out. Normally I'd be rejoicing, but I saw the oncologist first. The plastic surgeon said that they did test on what flesh they removed with the expander, and it was free of cancer, as was an internal lymph node they removed. As far as my current surgical wounds go, I'm free to stop the daily dressings. I need to wear a girdle (like Spanx) instead and keep on wearing the compression bras. I will hopefully get the stitches out next week.

Staying Home from Church Today

I really wanted to go to church this morning, but Joe and I weighed how long it would take me to get ready (1/2 hour for wound care, plus showering and dressing and dealing with concealing/attaching my drains to clothing), how long it would take to get to church, and how well I would be able to sit for nearly 2 hours in the pew before driving home again, plus the need to take pain meds while there. We decided that this week was too soon yet. The exertion of getting to church would wipe out my energy for today and perhaps for some of tomorrow.

Slow and steady wins the race. Joe and Entropy Boy went to church and Spiff is home with me to keep an eye on me.

Here's my theme song today:

Friday Morning

I am having a nice visit with my family. I'm still sleeping on the couch, and in a neck and neck in the race with my dad to take the most naps each day.

I was supposed to be taking heparin shots since I was released, but due to all sorts of frustrating circumstances, I finally started them yesterday. I have to give myself two each day, about 12 hours apart. I already had practice with the neupogen shots during chemo, so it isn't hard. I still don't enjoy doing it, though.

My wounds are healing really well. I'm amazed at how much healing has gone on already. I put Bacitracin on them every day, and that really speeds up the healing. I still walk hunched over, but I think it is more from the tape holding my bandaging on restricting my movement. Today I'm going to go a different route. Instead of using 4 x 4 guaze pads, I'm going to use long maxi pads and hold them on by wearing an ace bandage as a belt. Hopefully that will give me a little more freedom of movement around my waist and be easier to change out each day. Right now it takes 5-6 gauze pads and a ton of tape to hold everything in place, and I'd like the process to take a lot less time each day.

I'm very pleased with my new "rack" and glad that it isn't any bigger. It is in nice proportion right now. I will likely get a little smaller later after some swelling goes down, but they are very natural looking and feel very natural. When I move my arms, I don't feel an expander tucked under my muscle any more. I just feel squishy fat, like I used to feel. Right before and right after the surgery, I wasn't so sure I had made a good decision because of the pain and amount of healing involved, but I think the memory of that all will fade with time. I'd love for this to be my last surgery ever!

One thing that does really amaze me is the people on extreme makeover shows who get a whole bunch of plastic surgery at once. I can't imagine, knowing what I do now, electing to do all that surgery without needing to. Or electing to have surgery more than once.

I Showered Today

The plastic surgeon said that I could take a shower before redressing my wounds, so I did today. That pretty much sucked up my energy for the day. I have stitches from hip to hip, so it takes a bit to cover that properly and keep the dressings on. Plus, I still have the two drains on my hips to deal with. The output from them is very low, so hopefully they will come out next week.

My mom and dad are here to help out and have been wonderful. My floors are now swept and vacuumed and everything has been dusted. The Christmas tree was brought up from the basement and Entropy Boy decorated it with my mom. He had an absolutely great time and chattered throughout the entire process.

Spiff goes to the Statue of Liberty and Ellis Island tomorrow for a field trip. He is so excited that I'm surprised that he is able to sleep. I, on the other hand, have a warm kitten on my legs and I'm ready to fall asleep while everyone else watches season two of the original Star Trek series.

I Finally Got to Talk to the Oncologist

Evidently, she tried to call last night and it rang as a fax number.

My bone scan had some spots show up on my hips and on my left arm. They could be the beginnings of something or just the start of arthritis. I'm praying for arthritis versus the alternative.

She said she wanted to keep an eye on me sooner because her assistant had led her to believe that I wasn't scheduled to see her again until January.

So, I have some hip MRIs and an x-ray of my arm in my future, after I've done some more healing from the surgery.

I did get two drains out today at the plastic surgeon's office, so I only have two left. I need to take iron to help combat the blood loss from the surgery, aspirin to help prevent blood clots, and daily shots of a blood thinner to help prevent blood clots. I'm on Tamoxifen for the cancer, and it can increase the chances of blood clots and the surgeon wants all those little vessels he sewed together to stay working.

Thank you all for the prayers--please keep on praying! I feel emotionally drained today, on top of being physically drained.

Please Pray

Joe told me on Saturday the oncologist's office had called on Friday to confirm an appt for today. I had made an appt, but had changed it due to the surgery. I called this morning to see what was up. At first it was just a mix-up on time--they had moved the appointment and forgot to cancel the first one.

But then the office called back and the oncologist wants to see me sooner "to keep a closer eye on me". I have no idea what that means and called twice to ask that my oncologist call me back. My mind is going to all the worst-case scenarios. I'm crying and I'm scared and I feel betrayed by my body and by my oncologist for not calling me back.

I just want to be healthy again. I just want to be healed. I want to be here for my husband and my kids. I'm just so scared and I've spent the last couple of hours sobbing.

Please pray. Please, please pray.

Home Again, Home Again, Jiggity Jig

I arrived home yesterday (Sunday) afternoon. It was a low-key homecoming because I needed a nap soon afterwards. I had felt great on Saturday morning and took a sponge bath, but the exertion made me tank for the rest of that day. Note to self: save that energy so you don't spend the rest of the day sleeping.

Joe is home today because the surgeon wanted me to have someone around today so I wasn't alone with just Entropy Boy.

I got two of my six drains removed on Saturday morning, so now I only have four to deal with. They are still a pain and I am looking forward to them being removed (I'm praying that it will happen this week). Two are very low on my hips, so I'm alternating between the two pairs of low-slung sweatpants that I own.

I'm moving around as well as someone who is 40 weeks pregnant. My back hurts like it too. Because I have to be careful of my stomach incision, I've been using my back to compensate and I can feel the strain on my muscles. To reach something on the floor, I have to do lunges with my legs, keeping my back straight and reaching with my hands to the floor. I'm going to have some really strong thigh muscles when this is over.

My pain medicine has kicked in and it is time for another nap.

I'm out of SICU and in a regular room

They will take me off the pain pump later today. I'm sad about that. I love my pain pump. I"m still on a liquid diet until later this evening, but I'm not really interested in eating anyway.

My arms work well this time around, but twisting is completely out of the question. My stomach muscles are going to be really sore for the next 2 weeks. Recovery won't be linear--it will be steps forward and then backward again.

If this is disjointed, it's because I"m well drugged right now.

She's done!

I just talked to the surgeon and she's done. I'm off to see her now.

More later...

9:45 Still Waiting

About an hour and a half ago a nurse told me that the surgeons were closing, so hopefully everything will be done soon. But no news yet. It's just me and one other family in the waiting room now. I talked to LH and the boys are in bed. I'm glad they're able to sleep, I'm sure it's been a hard day for them.

Three More hours

The nurse just called. The micro-surgery is now complete and they're now beginning to close her up. Everthing should be done in another three hours. Ugh. I guess the "three hours" last time we talked meant three hours of micro-surgery.