Clear MRI & Mammogram

Yea! There's nothing better than a clear MRI. The mammogram did not hurt nearly as much as I had feared, but 45 minutes in the MRI is sure a drag.

Now we have to do some more followup and then see what we can do about getting tested for less money. I understand outside "Open MRI" places charge 1/4 or less of what Mayo gets. The trick is going to be keeping Mayo for my followups but paying $750 for an MRI instead of $4500.

Hair is about 2-1/2 inches now. I'm not ready to give up the wig but I do want to see what my stylist can make of it.

MRI and Mammogram Scheduled

We're set to have our first follow-up MRI and Mammogram this week. The Mammogram is only for the non-cancer side, the MRI will be both sides.

I'm hoping hoping hoping for no signs of recurrence. It will be another sign of being done with this.

I'm worried the mammogram will hurt though, I'm barely 3 months out from the implant surgery.

Also the MRI is $4,000, we'll have to leave Mayo or figure something else out if we're to have one of these every 6 months. Our insurance has a high deductible (it's an HSA) and even after that we only get 70% at out-of-network spots like Mayo.

Boobs Still Hurt

A month post-surgery and my breasts still hurt, especially the non-cancer (not tissue-expanded) breast. I did not expect it to last this long but friends who have had breast augmentation say it may take another month to feel better. They look fantastic though, they haven't "dropped" completely yet but they look almost normal. My plastic surgeon was fantastic.

The Tamoxifen side effects seem to be mild so far, no hot flashes and periods are nearly normal.

One last chemo side effect: fine blonde hairs on my face and back, something I never had before. Guess I'll have to Nair or wax them, they don't seem to be getting worse so I bet they stay away after I get rid of them.

On my head the hair is about an inch long. Still wigging it, probably will for another couple of months until I can get a hairstyle that doesn't look like a boy.

Last (?) Surgery

We've had the last surgery. This was the "boob job" surgery to bring us back close to normal. I was happy with my look before but this has sort of been something to look forward to since all this started. We did Mentor silicone implants, a small one on the "good" side and a larger one to match it on the mastectomy side. They gave me a peek just after I woke up (before alot of swelling) and it looks pretty good.

Right now though it's just alot of pain. I'm looking forward to a few days or a week from now when this is all over.

I'm really looking forward to only having some mammograms and MRIs in my future instead of Chemo and surgeries.

There's another option for later too. I can transplant a very small part of the "pokie" part of my good nipple to my now-scarred nipple. This will give it some projection and help it match the other. I'm scared to mess up my good breast but I've done very well trusting this plastic surgeon so far. He can do it outpatient with no general anesthesia too, so it would be easy and fast.

Tamoxifen

I started taking my Tamoxifen. I wanted to wait until I was clear of all the chemo effects.

The hair is about 1/2"

The Ovaries Are Working

My period is back, with a vengeance. It felt a little odd at times last month but this month is nearly a normal period. I know I'm supposed to want estrogen out of my body because it feeds cancer, but I'm hoping the cancer is all gone and I can enjoy the benefits of estrogen (like good bone density, sex drive, no menopause symptoms, etc.).

Mostly it's another sign of normal life returning.

Oh and the hair is about 5/16".

Inflated Again

My last tissue expander inflation is done. This means I should be able to have the implant surgery sometime in the next 4-6 weeks. More pain but it's on the way to being and feeling normal again.
Here's my plastic surgeon's web site.

Hair On My Head

Finally! I have some hair sprouting all over my head. It's under 1/4" still but at least it's coming in.

My abdominal pain I've had since baby #2 is back. Normally not a good thing, it might mean my ovaries have just re-started and are putting out estrogen again, and that'd be great news. Well good for all of my body except any breast cancer.

Yea, Some New Hair

My eyebrows have some gray areas that now seem to be sprouting hair. My eyelashes are coming in too and I think I see a similar gray patch on my head. I can't wait.

If my hair can grow back and my arm pain can go away then the chemo will finally be over.

Remainder Of My Hair Falling Out

Probably 95% of my hair is gone after this week. I didn't think I'd still be losing it 5 weeks after my last treatment. My eyebrows and eyelashes are mostly gone now too.

Depressing. I was hoping to have some new hair sprouting by now, not still losing it.

Chemo Symptoms Finally Easing

The eye doctor gave me some ointment which has kept my eye feeling good but I can't wear my contacts at all. It's been several days since I needed a nap so I'm over the fatigue. I'm dry from head to toe though, more so now than during the actual treatments. No hair growing in yet but it's only 3 weeks since the last treatment.

The oncologist says I should not expect to feel normal for another month or so. Luckily he says I can wait to start taking Tamoxifen until then.

No period this month, we may have to wait 6 months to see if my ovaries survived the treatments. I'm really hoping they are okay, I need the Estrogen to prevent osteoporosis and heart disease.

Mouth Sores and Eye Pain

They warned me about the mouth sores but I didn't think I'd come this far and get them at the end. I bit my lip and it's healing very slow. Very annoying and painful and I re-bite it almost every day.

But my eye has started hurting now. It seemed like an eyelash stuck in there yesterday but tonight it looks like there might be an ulcer and it's much redder. I'll have to call tomorrow for help.

I just want this over, I didn't expect so many small side effects to plague me at over 2 weeks after my last treatment.

Still Coming Out Of It

Still nausea sometimes and strange effects on my taste buds. Still tired and napping almost every day, almost two weeks out from the last treatment.

No more trips to Mayo for a couple of weeks and that's nice. No more doctors except one reconstruction surgery in a month or two.

I still have maybe 20% of my hair but no new fuzz coming in yet. I'm anxious for that last visible symptom to be gone too.

Sick and tired

The nausea is lasting much longer this time. The first cycle it was over the first night! This time it's Friday and I still feel sick to my stomach.

I'm tired too, I slept most of this week and I'll nap alot today I'm sure.

I miss my kids too, I hope they don't remember how tired and absent Mommy's been these past 2 months.

I just want it to be done but I don't feel like it's lifting yet.

Chemo #4

Today's the last chemo. We decided to not do the last Neulasta shot, there's not much point in being ready for the next cycle when this is the last cycle. Also a nurse says it might be the cause of my arm pain.

The chemo is uneventful except that they poke me several times finding a vein. Nurse #2 has to come over and try and she misses once too. I have an angry bruise spot and a long bruise streak to show for it.

Amazingly I still have some hair, it's only enough to wear a baseball hat and not look too goofy but I'll take it. Cycle #4 will probably finish it off though.

I'm dreading this coming week but at least it's almost over.

#4 Tomorrow...

Chemo #4 is tomorrow and my arm is still hurting. I have no idea where they will be doing the treatment but it won't be this arm. I can see where one vein has collapsed and my muscle (nerve?) still hurts further up.

I'm definitely more tired this cycle, maybe it was a little virus or having my period or maybe the chemos accumulate. I guess I'll know next week after #4.

Thank God this is almost over and my sympathies to people who have 8, 12 or more cycles.

My Arm Is Killing Me

My arm is weak and in pain from all the injections, infusions and blood draws in the last few months. They don't like to use the other arm since I had the mastectomy there so everything is coming and going with my left arm. Chemo #2 bruised me and #3 must have hit a nerve or something because it really hurts there.

On the up side I got my tissue expander re-inflated today so my right half finally matches my left. 2 more inflations and we'll be ready for the implant to finish the reconstruction. I can't wait.

Bad News/Good News

The only thing worse than a chemo treatment week is a chemo week AND your period. I heard all kinds of things about what chemo would do to my ovaries but no one can say for sure. There's a good chance (maybe 30%?) that the chemo will induce early menopause and "kill" them. I guess this is a good sign, it's right on time and fairly normal. Even if it isn't a good sign, there's no way it can be a bad one right?

I'm certain it doesn't make the week easier though.

Last cycle is June 18th.

My Uncle Died

I can't imagine a worse time but my uncle has died, of cancer no less. I really wanted to be there for my aunt right now but I just don't feel up to a 6 hour drive. Flying is $1000 (and this is a lousy time for unexpected expenses) but I'm worried that I'll get sick in a plane (or hotel, or rental car, etc.)

Chemo Cycle #3

Well Chemo plus a cold is no fun. I can hardly breathe but my white cell counts were still good enough for round three. On the one hand I hate this cold and that I might have it for another week, on the other hand I'm happy to be 3/4 done.

The hair is about 2/3 gone now and I have to wear a hat to go out. No one at Mayo could believe it had lasted this long. I still wonder if a "cold cap" would have worked for me.

A Cold

I have a cold or at least a stuffed up nose. I'm even more tired than usual too. Maybe it's a virus or maybe it's just the edema they mentioned and some hay fever. Either way I'm not looking forward to another cycle tomorrow.

Hats and Bandanas

We went to the store and bought bandanas and some baseball hats. We bought some for the kids too and played pirates around the house. Seems like about 1/3 of my hair has fallen out so it's time to start working with this stuff.

Much More Tired

This time I'm napping every day for the last 3 days. No more aches (from the Neulasta shot?) but I'm definitely more tired. Lots of help from friends and family is helping us and helping to wear the kids out everyday.

I feel all dried out everywhere too, despite lots of water, lotion, etc.

The hair continues to come out a half dozen at a time, tomorrow I have to wash it and I'm not looking forward to how much comes out then.

So glad this is halfway done.

Neck Aches & Nausea at Midnight

Not as easy as the first cycle. I've got neck pain and I'm afraid to take an Advil because I'm also feeling like I'm going to throw up anytime. It takes 45 minutes for a Zofran to knock that back and I can take something for my neck, then another 30 minutes or so before that kicks in and lets me sleep.

My appetite is better but I was tired already today, it took 2 days to get tired the first time.

The hair is coming out now, no clumps yet but I'm leaving a few hairs behind wherever I go.

Chemo Day #2

Second time much like the first. After getting my lab work back and seeing good white counts (thanks Neulasta), we're sent off to the Chemo room. 2 hours of Adriamycin, Cytoxan and the gang. Mild nausea at home tonight, calmed by Zofran and Compazine. Today was actually a little better than the first cycle because I tried harder to eat and drink.

Still have all my hair but everyone agrees this is the week it must go. I've got one wig and a hat with more to come when I feel up to it this week.

Uh-oh Spicy Food!

I forgot they told me to avoid spicy food and I ate some marinated pork chops tonight. My stomach is reminding me now, not quite as bad as the initial chemo dose but no fun. My oncologist says stomach cells regenerate all the time and the chemo kills them just like it kills cancer cells.

Muscle Pain

My legs are aching for the past two days. I don't know if it's a genuine side effect or if I just over did it shopping for wigs. Either way climbing the stairs is a real pain.

Lab Work

Boring lab work visit today but this is where they see if my white cell count is bouncing back where it needs to be. Results next week.

Oh and my appetite is back to normal.

Chemo Going Well So Far

So far so good, I'm definitely more tired than normal but that's about all so far. I've lost about 5 lbs because almost nothing sounds good to eat to me. Still we're feeling very lucky.

Feeling Odd

At chemo +3 days I feel like my head is full of something, maybe the medicine. I almost have a headache all the time and I just don't feel like myself. I'm lucky I'm not tossing my cookies all day long. At least I can eat and I'm not completely useless.

Chemo Sets In

The chemo has been pretty light up until now, just nausea the first day and mild fatigue after that. But today I'm sleepy and napping at noon. Things smell funny but I'm still tasting things normally. A friend warned me that the first treatment can be lighter and they get worse as time goes on. I'm hoping it'll just be easy on me.

Neulasta Shot

Today we return for a Neulasta shot. It's $4,000.00 but it will let us do the treatment in 2 months instead of 3. It boosts the white cell count so we can get more chemo treatment sooner.

Chemo Day #1

Today is the first day of Chemo. We go and talk about it for awhile and the oncologist finally recommends we take Adriamycin over Docetaxel, with Cytoxan added. We'll "only" have 4 cycles, and we're doing the "dose-dense" treatment every two weeks, so we feel sort of lucky that ours will over in 2 months.

They give me a steroid, Benadryl, and something called Aloxi for nausea. Then they push in two big vials of the Adriamycin (a.k.a. doxorubicin). Finally they hang a bag of the Cytoxan and let it drip in. The whole treatment takes about 2 hours.

We go home and I feel fine for about 4 hours and then start to feel nausea. I take the Compazine they gave us and then the Zofran. No vomiting. I finally get some sleep at about 11 pm.

Chemo Decisions and HER2

We go in for a final appointment before chemo to discuss just what we'll take and what the effects will be. Just as we're getting started we discover the path report from surgery #4 showed us as having a 2+ score on the ICH test for the HER2 receptor. Oh shit. Our first path report showed us as being HER2- and we rejoiced because HER2+ tumors have a worse prognosis.

This ends our dicussion of chemo treatments, we can't pick one until we know HER2 status. We go home and read that 2+ ICH score is ambiguous and they must do a "FISH" test to tell for sure. The next day we discover the FISH test was already done (but not not entered in the computer at Mayo) and we are indeed HER2 negative.

It sure made for a horrible night though.

We have a friend who is getting considerably more chemotherapy because she is HER2+. In all other respects we are almost the same (stage II, node negative, ER+, PR+, about 40 years old). We sure did not want to hear that was our future.

And it all delays us yet another week.

What a difference 125 cc's makes

Today we go back to the plastic surgeon to get my tissue expander filled back up. My minor surgery 2 weeks ago required they take out most of the saline in the expander. Today they put in 125 cc's and that gives me about an A cup. Much easier to work with than a flat chest and mush closer to the B on the other side. No serious pain either.

Surgery #4

Today is surgery #4. The folks at Mayo have convinced me that one more (minor) surgery could help with my almost-positive margins. They are just taking about 3 square inches of skin around the lumpectomy scar. In surgery they take a little bit of the muscle underneath to get the margins as clear as they like. They have to drain out 150 ccs of my tissue expander but at least they don't have to remove it. Heidi Chua is the surgeon and she does a good job.

The subsequent path report shows tiny amounts of invasive cancer and some DCIS, so we're glad we did it.

To Mayo We Go

We get a flurry of appointments at Mayo. We meet with an oncologist who says we might consider 4 cycles of Docetaxel instead of 4 of Adriamycin and 4 of Taxol. Shorter sure sounds better to us, and maybe Docetaxel is a better drug with less side effects.

Next we meet with a radiation oncologist who says we don't have much use for radiation. Followed by another radiation oncologist who can't seem to decide if we need radiation or not. We ask if there are any gray areas where we might receive some radiation but not the whole 36 treatments but no. The radiation oncologist who can't decide (we call her the hand-wringer) defers judgment to the whole team.

Finally we meet a surgeon. She wants to re-excise the area and try to get better margins. We decide we'll do it if we can avoid radiation. It also means another month before the chemo can start though and it's awful knowing that is coming. Two days later we schedule the surgery.

Oncologist Visit

Today we went to the oncologist to review our bad path report. He says we'll need chemotherapy. He wants us to do 4 cycles of Adriamycin+Cytoxan and then 4 cycles of Taxol. This is the worst news so far. All the chemo horror stories are coming back to us now. Hair loss. Vomiting. He wants to start next week.

We decide to abandon the standard doctors-near-a-hospital method of care. We have a Mayo clinic here in Jacksonville and we hear great things about them. We set up some appointments there.

Bad Path report

Yesterday the surgeon's office called and said that although he was out of town they had the path report back and we had clear margins. Today though Dr. Hartigan called with much worse news. The margins were indeed clear but less than a quarter millimeter thick. To most oncologists this is nearly a positive margin.

Worse still they found 7mm of tumor and it had "angio-lymphatic invasion", also called "lymphovascular invasion" or LVI (see definition here). It isn't clear just what that will mean but we're scared that our node-negative status is in jeopardy and chemo might be in our future.

We have no idea how the tiny 7mm (pea sized) remaining tumor would show LVI while the large 23mm tumor we took out at lumpectomy had no LVI in it.

And yet more bad news they said our cancer was "multi-focal" so had many small areas of invasive cancer instead of a clearly defined lump.

None of this sounds good to us.

Mastectomy

Today is surgery #3, an areola-sparing mastectomy or ASM (pubmed entry here). Not to be confused with a nipple-sparing mastectomy, an ASM takes the central part of the nipple where the milk ducts are but leaves the colored skin that is the outer areola. The breast tissue beneath is completely removed but no other skin is taken. Many surgeons will want to re-excise any previous scars (e.g. lumpectomy) too. This will leave me with a scar or two but hopefully a near-normal looking breast and nipple.

We had our plastic surgeon put in a tissue expander put in at the same time and slightly filled to give me some shape.

Joseph Hartigan was our surgeon and Paul Scioscia was our plastic surgeon, both did excellent work.

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Mastectomy Types
Incision for modified radical mastectomy	Scar following surgery
Incisions for skin sparing mastectomy.	Scar following surgery.
Incisions for areolar sparing mastectomy.	Scar following surgery.
Incision for nipple-sparing (subcutaneous) mastectomy.

MRI Day

Today was a pain. We spent an hour waiting for an MRI and then 45 minutes sitting perfectly still while they did an MRI of both breasts, both with and without contrast. We're looking for any reason to do a mastectomy on the left breast too. The results take 10 days but there's nothing showing on the left side. The bill for the MRI is nearly $5,000.00.

Meet the new surgeon

Today we met our new surgeon, Dr. Hartigan. It turns out he's not so new, I had a cyst removed by his partner a few years back. He says we're good candidates for an areola-sparing mastectomy (ASM). He also says that most Europeans don't do mastectomies like we do here, they almost always leave the nipple or the areola. We're also happy that he and our plastic surgeon will be able to work together in the same operation. He says we need an MRI bad to check the other breast for cancer, we agree and couldn't believe our old surgeon didn't want one.

Big fat "NO" from our surgeon

Dr. Chisholm finally got back to us today after almost 3 weeks of waiting. He refused to do an areola-sparing mastectomy and I'm pretty sure he doesn't know what one is, he has it confused with a nipple-sparing procedure. He's very "old school" and that's starting to grate on us too. And for icing on the cake he refused to let us even talk to another surgeon at his office. He even went so far as to say that if we had surgery at his hospital he'd be the one doing it.

We are fed up with him. We called our plastic surgeon back and asked for a referral for another doctor and got one the next day.

BRCA test comes back

We're really relieved to hear I'm BRCA negative, I don't have the BRCA1 or BRCA2 mutation that enables many cancers, particularly breast and ovarian, at a young age. The test was somehow mis-handled and reported back to the wrong doctor. Add a few missed phone calls and we wound up waiting an extra month for these results.

Well the plastic surgeon is ready...

Our plastic surgeon called to tell us he has an opening next week. But our surgeon hasn't answered us about what mastectomy he's willing to do. Our other surgeon (at the same office) has not called us back either. So we could get this over with 4 days from now but we can't get any love from Dr. Chisholm's office. We're getting more and more tired of being ignored by him and his staff.

Can we change doctors?

Today we called again to try an get an appointment with a surgeon that we've been told can do the areola-sparing mastectomy. Unfortunately he's in the same group as our present surgeon and the staff there are not making it easy for us to "jump ship" to the new doctor. The staff there are awful and take days to return phone calls.

Followup with surgeon

I meet with the surgeon finally and he seems very annoyed that we're considering the areola-sparing mastectomy and he pushes hard for us to abandon it. He doesn't say "no" but he sure did not seem to want to do it.

We call our plastic surgeon to find some surgeons who know how to do it. The first one he mentions is right here in the same surgical group as our Dr. Chisholm. This will be tricky.

Meet plastic surgeon #5

Today we met yet another plastic surgeon, the last on our list but the one we heard the most good things about. The recommendations were right, he, his office, and staff seem to be focused on making women look good. He talks to us like real people but explains everything too. We're getting to be old hands at breast reconstruction options now. He tells us there is a way to perhaps spare most of the nipple and then use a bit of the other nipple to help reconstruct. We're thrilled because most of the tattoo jobs we saw photos of were not natural looking. Even if none of that works out we're pretty sure we've found our plastic surgeon.

We called our surgeon to see what he thought but it would be almost a week before we can even talk to him.

First trip to Mayo

Today we went to Mayo to interview a surgeon for our mastectomy and also a plastic surgeon for reconstruction. We left thinking that Mayo is fairly conservative for a "clinic". But it has some powerful advantages in having a team approach to every patient and having all your records on one computer system. If we have to have chemotherapy or any long-term treatment, Mayo seems like the logical choice.