Round 1

Good lord. I had heard loads of stories from women who said, “Oh, I didn’t even notice my first two rounds of chemo on TAC.” I had been told repeatedly, “Nowadays, we have such good anti-nausea drugs, no one has to suffer from nausea and vomiting during chemo.” I bought it. Hook, Line, and I was the Sinker.

I went into my first round of chemotherapy bright and chipper. I had my little cooler of provisions. I had my crushed ice. I had a book and Sam came along ‘just in case I needed someone to drive me home’. I will say that sucking on ice or popsicles during adriamycin does keep you from getting a metallic taste in your mouth. That worked just fine. I ate my lunch, no problem. I got a slight headache with the last drug, but they brought me a couple of Tylenol and all was fine. We collected our baggie of drugs at the door and went along home, expecting to have a quiet evening of rest.

Oh my goodness…no. I was violently ill for the first 24 hours. Not just nausea and vomiting, but continuous, all over muscle trembling. I was only semi-conscious for most of it. Sam had to help me walk to the bathroom. I went in the next day for fluids and yet more anti-nausea meds intravenously, but to little avail. I couldn’t really eat anything for the first three days. I lost four pounds in that time and recovery was achingly slow. Little by little, I regained the ability to hold down food. After a full week, I can just now eat a fairly normal daily diet. Lots of foods are off limits…too acidic, taste awful. Chemo does very nasty things to your digestive track, from your mouth (soreness and ulcers) all the way out. Everything tastes off or just doesn’t taste at all. And although that effect wears off over time, it doesn’t wear off completely. Chocolate ice cream tastes wrong. Now that’s just criminal.

So…the next week we return to the oncologist’s office to see the Nurse Practitioner (NP) and discuss my side effects, etc. She was a wee bit condescending and somewhat unhelpful. It basically comes down to this: They threw the big guns at me the first round. They antiemetics (anti-nausea drugs) I was taking were the best, strongest things they had. She said they could try mixing it up a bit and see if I responded better, but basically they would just hope that I gained back the weight between courses. Come on lady. I’m not going to gain back four pounds in less than two weeks. I’ve barely gained back half a pound at this point. Sam pitched a fit. I’m serious. He verbally pounded this woman for not understanding what was happening with me, not with every other patient. He suggested that looking at statistics and not the patient might not be good enough. She was a wee bit miffed. 🙂 I must say this was fun for me. I’m usually the hard-core bitch in the family. To have Sam verbally roughing someone was enough to give me the giggles, which didn’t do anything for NP’s temper.

In essence, we are now on our own with this one. I’ve had suggestions and we’ll try a couple. At least one of them is unpublishable (wink wink).

We also saw a nutritionist. He was recommended by our friend Jeff, who thinks this guy should sprout a halo and wings. We were duly impressed and came home with a schedule of supplements and instructions for me to ingest 100+ g of protein a day. That’s right folks…you heard it right…a day. That’s a lot of protein, but maybe it’ll put the weight back on faster. I’m doing shakes. Chocolate shakes. They taste pretty good.

Oddly, I still have some hair. I’m expecting it to go soon. I haven’t been troubled too much by mouth ulcers or bone pain or really heavy exhaustion. I get tired in the afternoon and I have trouble sleeping. Next week is going to be better. Then it’s onto Round 2…

A friend died yesterday.

She didn’t have cancer.
She wasn’t even ill.
Her husband, for reasons we will probably never know, came home in the middle of the day, locked the doors and shot Andrea before turning the gun on himself.

Andrea was a beaming, joyful person from her crazy red hair to her ever-present smile down to the bottom of her lighthearted step. She was an exuberant, caring mother of four girls ranging in age from 8 down to 3. Two of the girls have been in school with Aidan and all of them went through Donna’s class.

The fear and uncertainty that I have been dancing with for the past 8 weeks is nothing, nothing, in comparison to the shock, grief and rage I feel at this complete tragedy. There is no one to explain, no one to rail at, and there is no reason in the world that I can forgive for what has been done. I cannot begin to imagine why anyone, least of all her husband, would want to do this to Andrea or to their daughters. Insanity couldn’t be enough of an excuse. I loathe the cowardice these acts reveal.

I start chemotherapy tomorrow morning. A journey towards life and light that will now be missing a friend who I was just beginning to really know.

And the Verdict is…

So, the portacath insertion went swimingly. It actually took them less time than usual and we were home by ‘lunch’. Course, I wasn’t much on eating, but that’s alright.

Yesterday (Friday) we went to see Dr. Tokaz (oncologist) to figure out the schedule from here on out. Treatment is the longest phase of dealing with breast cancer. In the past 6 weeks I’ve gone through initial testing, biopsies, diagnosis, lumpectomy, re-diagnosis, bilateral mastectomy with reconstruction and 4 weeks of relatively quiet recovery. Whoa. Treatment on the other hand is going to span a minimum of 18 weeks…and that’s just the active medical part. Recovery will be a number of months after that.

Dr. Tokaz took us through a number of treatment senarios, culminating in his recommendation that we do TAC…6 cycles at 3 weeks apart. Okay…the explanation I have for this is pretty vague still. There are many different classes and types of chemotherapy drugs. I will be doing AC (Adriamycin & Cyclophosphamide), the most common regime for early stage cancer in pre-menopausal women. I will also be doing Taxotere, at the same time. This is apparently newish and aggressive. The idea being a moderately spaced, heavy regime has the best chance of lowering my chances of recurrence. Alrighty then…

If that were it, this wouldn’t seem quite so overwhelming. Chemo doesn’t just happen alone, there are a number of other tests and support appointments that go along with it. Harken to me…Week 1: Meet with oncologist followed immediately by chemotherapy. 24 hours later, return to lab for injection of White Blood Cell builder (neulasta or similar). Later in the week, return for WBC count check. Week 2: Meet with Nurse Practitioner to asses side effects,etc. Later in the week, WBC counts. Week 3: WBC count check. Add to this the fact that I’m seeing a physical therapist weekly and an acupuncturist the Saturday after my chemo and a nutritionist on top of that.

If this seems like a full-time job to you, join the club. I’ve already got a full-time job thanks…two children, a husband, a household, multiple pets, a garden…HELP. Okay, we’re looking for a part-time nanny. I never thought I’d be the nanny type of mom, but ya gatta do wat ya gatta do. I’m going to be hiring in a service to clean the house every other week. I just can’t waste the energy keeping up with heavy household chores (for those of you snickering at me, yes, I know I never did them much any way) There’s also the fact that everything needs to be super sanitary around here for the next 5 months. Chemo knocks down your WBC count and leaves you very vulnerable to infections of every kind. If the kids or Sam gets sick, I have to hide. If I even have the sniffles, I can’t do my chemo that cycle, and I want to stay on track and get this over with sooner. I have lots of friends and family to help, but, wow this still seems like a big, overbearing beast.

All in all, I think I’m ready. I’m not looking forward to it particularly, but I’m setting my sights on January. And, just so you know, I’m counting not in months or weeks, but in cycles. 6 on down. I should have my first treatment on Tuesday or Wednesday of this week. I’ll let you know how it goes.


Shorn, shorn, shorn

In a preemptive strike against certain despair, I decided to shave my head now (last night) instead of watching it fall out from the chemotherapy. My reckoning is that the more proactive one can be the better. I choose to cut my hair and make it serve a purpose. I have sent the lot to Locks of Love. For those of you who don’t know, this organization (one of many) makes wigs for kids with leukemia and other serious illnesses that have caused them to lose their hair. It’s often harder on the very young to understand being bald. I’ve donated before…when I realized I was going to be very, very pregnant in August with Cassidy, I cut about 16 inches and sent it off as a donation. It’s a good feeling…

The kids are handling mom’s new look quite well. We warned Aidan ahead of time that the chemo was very strong medicine that would make my hair fall out and often make me very tired. We told him that I was going to cut it before that happened because then it was my choice. I told him last night that daddy and I were going to cut it and he seemed okay with it. Cass was a different sort of difficult. There isn’t a way to warn a 2 year old that Mommy is going to look much different in the morning. I woke her up in the dark so she would recognize my voice before seeing me. Then we turned on the little light and she worked up to it. In just a few minutes we were all trying on my hats and scarves and she thought it was great. Much fun has been had rubbing my head…and Aidan made a note that Daddy and I have the same haircut now. Yay! One hurdle passed, without clipping the bar.

Aidan has started seeing a group called Wonders and Worries. They are a group that supports children who have a serious illness in the family. We went for the first time yesterday and Aidan met with one of their counselors. The conversation started with Aidan telling Meredith all about my illness, it’s progression from tests, to surgery, the hospital, and how I was going to be taking “strong medicine” that would make me tired,etc. They then went off to ‘play’ and discuss the portacath and various other things. He wanted to know, upon leaving, when we were going back. Hurdle #2…done.

Thursday morning I go in to have the portacath placed.
Friday morning I go to see my oncologist.
Sometime early next week I start chemo…

The race goes on.


The Long Slow Road

Recovery is tough. I mean, I was expecting not to be able to use my arms much. I was expecting to be sore and have difficulty sleeping. I was expecting to need a lot of help with the house and the kids. All of this is very obvious in theory. When it actually happens, it’s much more challenging than you would expect. What does it really mean to not be able to raise either arm over your head or carry more than a couple of pounds in either hand? Well, it means Sam is still washing my hair and I can’t even pick up the cat, much less my daughter. Okay…I knew that I wouldn’t be able to pick up Cassidy for a while (she does weigh close to 30 lbs after all), but the water pitcher? I hadn’t really thought that one through. Sleeping is still challenging as well. I sleep in a mostly sitting position. Somehow these details don’t get mentioned in all of the support sites, etc. At least, not that I noticed.

On the good side, I’m healing well. The drains came out on Monday. Dr. Cullington was very pleased with my progress and hinted at dire possibilities that hadn’t occurred. I spoke with Dr. Tokaz (oncologist) and he feels good about getting the portacath put in in a couple of weeks. It won’t have to be under general anesthetic (yay!!!) and this should be a relatively minor procedure. I’ll be seeing him in another 10 days or so to work out a treatment plan, etc.

I’m actually feeling well enough to be restless in the house. I’m out in the garden in the mornings, picking veggies, seeing the chickens. I can sit and read books with the kids and do a bit of cooking (no chopping, but it’s progress). I poke around with stuff in the house and do too much and end up sitting a lot in the evenings to catch up. I’ve been told I can drive, but I’m letting other folks do that until it’s necessary. Don’t need to push it.

Feel free to call or come by or whatever. The afternoons are a bit long at this point and the kids love company, too.


Post Surgical

The surgery went off as planned. Both my surgeon and my plastic surgeon were pleased with the results. I was less pleased, but only because I was in a lot of pain in the hospital. It took a couple of days to work out a pain medication that I could tolerate that would also be strong enough to diminish my symptoms. Unfortunately, when the nurses moved me from the gurney to the hospital bed, I subluxated a couple of ribs (threw my back in layman’s terms). By the second day, my back hurt a lot more than my front and there wasn’t much to do about it until I got home.

We checked out on Monday morning. I must say, the majority of the nursing staff were very, very kind and helpful, if a tad understaffed. When we got home Monday, I felt peachy. By the middle of the night I was violently ill. Gastrointestinal yuck! By 5 am I couldn’t hold down liquids and we were on our way back to the hospital. Two bags of IV fluid and som IV pain and nausea medications later, I felt much better again. We reviewed all of my medications and decided that, with my sensitivities, my body had just gotten ticked and rejected the lot. The doctor in the ER helped me work out what to take and I stopped taking the anitbiotics, which are a terrible one for stomach upset. I think at one point, in the hospital, I was on 6 different meds in one day. Yick.

Each day is an improvement. I’ve gotten tons of sweet cards, lovely flowers, and nice visits. And everyone’s support has really allowed me to let go of my daily routine and rest a lot. I’ll be really glad when the drains come out next Monday. Then I’ll be able to walk outside more and just get around easier by myself. Right now I’m on a leash, quite literaly. 🙂

Surgery and Recovery

The surgery went well yesterday. It was two procedures back to back. The bi-lateral mastectomy, followed by immediate reconstruction. Both went off without a hitch. That’s a lot of work though and Kelley was in there for about four and half hours. General anaesthetic was also proportionally more than last time so she was in recovery for a while, and looking sick to the gills when they moved her to her room.

That’s been getting progressively better, and this morning she’s been eating a little, got most of her color back and getting in and out of bed basically by herself. This is it for a few days, when she’s feeling up to it – probably monday – she’ll come home. Meantime I’m camping out up there, and the kids are at home with my folks.

Aidan’s taking it well. He’s concerned but taking it in his stride. Right now he’s making some cut-outs that I’ll take back up there later this afternoon. Cassidy is also managing fine. It’ll be good to get home, but they just don’t need to see all of this just yet.

Okay…Good News.

Earlier this week I went in for a CT scan (circulatory and organs) and a Bone Scan. Both of these were searching for traces of metastatic cancer in the rest of my body. After the word ‘Cancer’ the word ‘Metastatic’ is probably the scariest. Both of these tests came back negative (which is a good thing). This means that there are no traces of metastatic breast cancer anywhere else in my body. Wheee! In treatment, this means that we’re definitely dealing with early stage II, low grade tumors (now gone) and a very low amount (if any) of widespread cancer in the body. We’ll do chemo, I’ll take my pills and we’ll get on with life.

I’m going to be checking into Brackenridge tomorrow morning at 6am (disgustingly early) for an 8am surgery time. Surgery is scheduled for 5 hours (both the bi-lateral mastectomy and reconstruction) so I should be out of recovery sometime after 3pm. I’ll be in the hospital for a few days. I’m thinking I’ll come home Monday. Please feel free to call the hospital or here. If I’m tired, we’ll turn off the phone. 🙂 If I’m up for visitors, Sam will tell you, and if I’m not, he’ll tell you that, too. Sam will blog sometime Friday afternoon/evening to let everyone know that things went well. So check back in here late Friday. He won’t have my email list to work with…

Bright blessings to all.


The Evil in the System

This week has been a prime example of the utter wrong in the American medical system. It started with the fact that to get silicon implants, one has to be involved in a government study for five years. Okay….simple enough…someone is going to follow my breasts around for five years (images of men in black stalking me, staring at my chest). However, this involves over an hour’s worth of paper work filed at the doctor’s office that noone thought to mention until Monday afternoon. I could have spit nails. I did use abundant profanity in the general direction of the girl on the phone who really should have mentioned it over a week before when we opted for silicon in the first place. At any rate, I screamed to a number of people, including two of the doctors and the whole thing suddenly righted itself. I went in and sat in a comfy green chair, while the doctor’s staff asked me a ridiculous number of questions about maladies that I’ve never heard of and then asked me to sign off on many little lines. Done. If the government wants to pay someone to stare at my chest for the next five years, okay.

The next was the insurance company….I’m not sleeping well (obvious reasons) and as being well rested is important before my next surgery, I called Central Family Practice and LeAnn said, “Let’s get you some Ambien”. She calls it in and, lo and behold, the insurance company won’t pay for it. Sam and I discover this at 7 o’clock at night when we go to pick up the prescription. Apparently, the insurance company won’t pay for Ambien on a regular basis, but the doctor can call in a one-time override, under special circumstances. Of course, it was after office hours, so we’d have to wait until the next morning or pay for the whole cost ourselves. I had warm milk and slept moderately well. I called CFM in the morning, they called the pharmacy, then called the insurance company and now I can go get my prescription, but they covered it at the lowest level they could (we still pay about a third of the cost). Anyone else think insurance companies are evil? Stand up and shout now. The insurance companies in America insist that they have to keep cutting coverage and raising prices to counter the rising cost of litigation and the pharmaceutical companies’ excessive price ranges. Bullshit. At the same time, many insurance companies are posting record profits year in and year out. Someone do the math for me.

The airlines. We booked flights to England with the intention of visiting Sam’s family. We had to cancel. Obviously they were non-refundable, unchangeable, etc. However, there’s a medical exception clause in there. British Air is currently deciding if a cancer diagnosis and surgery are valid reasons for canceling our trip. They may refund our money..they may not.

All of this leads to what really gets me aggravated. I’m 35. I have two young children. In the past 5 weeks, I’ve been diagnosed with breast cancer, had multiple biopsies, one surgery and I’m about to have a bi-lateral mastectomy on Friday. Someone give me a break! The people at the plastic surgeon’s office acted like I was the problem. The insurance company is completely unaffected by my current condition. The woman on the phone at British Air barely registered what I was telling her before shoving me off to the customer service group (who don’t accept phone calls, by the way, only fax or mail) The money grubbing, profit chasing attitude in this country has obviously stamped out basic sympathy in way too many people. I don’t expect folks to weep and wail, but some common courtesy would be nice.

What to Do?

In my quest to do Something while waiting around…

My sister mentioned the Susan G. Komen Race for the Cure on November 6th, this year. There’s going to be a one mile family fun walk and we’re in! I’ve created a team (Team Green). We would love to have anyone join the team and join us for the walk. You could also do the run, either timed or not.

****There is a problem with the race website…don’t try to register for the team right now. You can’t register for the walk***

I made some team T-shirts here: Team Green Store

Yay to Laura for giving me something to think about and do yesterday evening! 🙂