Five days post-reconstruction

You’d think I’d have learned by now that the trauma of surgery always burns off my estrogen faster than normal. I’m post-menopausal (hysterectomy) and so I use a bioidentical estrogen patch to provide what my ovaries used to.

I have found that normally I can be fine with just 1/2 patch sometimes for as much as 7 days, tho they are intended to be swtiched every 3.5 to 4 days. 

But when I’ve had surgeries, it seems that I can only go 2 to 3 days before I start feeling feverish, itchy-crawly, sleeping poorly, etc.  Like a idiot, each time, I think I must be getting sick…until I think to check when I last put on a new patch. I just did that and sure enough it had been almost 3 days since I put on the last one.

So I put one on Friday,  the morning of surgery, another 2.5 days later on Sunday evening, and the latest one midday Weds, 2.5 days again.

As I recall this pattern fades after maybe 10 days.  Maybe even less.

Regarding my recovery, the local anesthesia wore off mostly by Sat evening and there was only minor discomfort. I have been able to sleep normally since the first day, even sleeping on my side and tummy. Monday I worked in my office, and Tues I mowed for 45 minutes…tho I felt well enough on Monday and even Sunday to have done it.

Today I had my checkup with the surgeon who says the two breasts were more or less matched when he left me in recovery. “Pam Anderson” (the augmented natural breast on the left) is still very swollen and the doc assumes it may have quite a bit of fluid in the pocket where her put the implant. Since there are no drains, I just have to wait till my body reabsorbs the fluid. The doc says he really can’t put a smaller one in because it would also be smaller diameter and could float around in the pocket. So we’ll just wait and see.

The doc says this will subside noticeably in 2 weeks, and will be where it should be in 6-8 weeks. he showed me a photo of a patient with implants at day 5-ish, like me, and again at 8 weeks. The first photo had the high-riding, stickie-outie look that mine has. In the second photo, both breasts had a natural slope and projection.

The nurse told me her implanted breasts would swell sometimes unevenly for a while if she favored one arm in working out or doing chores.

We ordered a pair of stick-on nipples, which I’ll have to build up with the hot glue gun to match the original.

I decided not to push for the nipple reconstruction this year. The doc agrees. He is concerned that I have so little (or no) flat layer in the bionic breast because of the mastectomy. He is thinking of doing fat grafts next year to fill out any shape issues (possibly help get rid of the squared-off look) and to generally give me some fat between the skin and the implant. After he does that, we can decide what to do about the nipple reconstruction. It’s possible the added fat will make it easier to get a decent result.

That’s it for now. Have a wonderful Thanksgiving!

Breast reconstruction done

Yesterday morning (Friday, 11/21/08) I went in for my (hopefully) final reconstructive surgery. The doc replaced the saline expander with a silicone implant, revised the mastectomy scar and installed a small silicone implant in the normal breast.

I had almost no stress or anxiety going into this surgery so I was really surprised that my BP was at 140 over 80 something that morning.

I had a chat with the anesthesiologist and told him I didn’t want narcotics for post-op pain unless I specifically ask for them. He turned that around and said that no matter what happened nobody would give me narcotics, even if I’m screaming in pain. Then he described a previous patient who threatened to sue him over getting drugs she didn’t want. I suggested that maybe there had been a misunderstanding with her, just as he had misinterpreted my request. I showed him my own printed sheet of info and reiterated what it said and what I’d already told him: “Don’t give me any post-op narcotics unless I specifically ask for them.”

We talked about my post-op nausea concerns and he said he typically uses phenergan, Zofran and dexamethasone. It sounded like a good cocktail to me. But alas, when I woke up I was nauseated. The nurse gave me more phenergan and then some Zofran. And I ate a pumpkin muffin with some water. Once the meds kicked in I was out like a light.

Surgery started around 8:30 and I was back in my room a little after 11:00. I had zero pain. None. Thanks to the long-lasting local anesthesia the doc had used. Well, no pain unless you count the sore throat from the tube. But that’s mostly gone today, tho I’m still a bit hoarse when I talk.

 The nurse woke me up around 2 yesterday. I got up and pottied and she said I could go home.  

On the way home Lloyd got me a Breakfast Jack and rootbeer. I mostly ate the egg, ham and cheese and avoided the bun. The rootbeer tasted way too sweet, so I just had a few sips and mostly drank water.

At home I slugged out on the couch for another few hours, not quite dozing, then got up and came over here to my office to send out an email to let people know everything was fine.

Yesterday whenever I got up from sitting or recling a while, I felt as if my body weighed a ton at first. I’ve never experienced that before. But that’s gone today.

I had no trouble sleeping last night, tho I did put an extra pillow under my waistline to prevent squashing the breasts. Today I can tell the anesthetic is worn off, but I feel only the mildest soreness, mostly when I move a certain way. It’s not even remotely enough discomfort to warrant so much as a Tylenol.

My biggest concern now is that the original breast seems considerably larger than the bionic one. I knew we’d lose some skin when the doc revised the scar on the bionic breast, but it seems quite a bit smaller than it did with the expander.  I’m in a wait and see mode, hoping the natural breast is just swollen.  I see the doc on Weds so I’ll find out what I can expect at that time. I suppose worst case scenario would be that he’d have to open the bionic breast one more time and put in a larger implant.

I don’t expect much in the way of nipple reconstruction. As I understand it, all methods provide only a token nipple, and my natural one is large, so we know he can’t match that.  Oh well.

I’m just thankful that this process has been as successful as it has.

Broken Record / Songs Stuck in Your Head – Part 2

There has been a relative flurry of responses (3 within two months) to my previous post on the subject of music stuck in your head http://hormoneguru.wordpress.com/2007/10/28/songs-stuck-in-your-head-broken-record-syndrome-part-1/. 

A year ago I knew of only one other person with this condition. Now I know of at least 12. And 5 of them have been willing to talk with me, providing important details about their experiences and sharing their fears and their anguish.

My private correspondences have covered issues, theories and possible courses of action that may be helpful for other sufferers out there. So I’m going to summarize their content in today’s post. It may be a long one.

THE EXPERIENCE OF BROKEN RECORD (BR) SYNDROME / AUDITORY MEMORY LOOPS (AMLs)

Basically, sufferers of the AML phenomenon ”hear” (in their heads only) short (5-15-second) clips of songs and sometimes phrases over and over to a maddening degree. While most of us have had a song stuck in our heads for a brief period, in those with the AML phenomenon, the noise reaches pathological proportions. It dominates our lives and can, in fact, ruin our lives.

At one end of the spectrum, for some sufferers the internal music is like a soundtrack to life and causes little or no disruption to speak of.  For others, the loops occur sporadically, totally consuming their lives at times, and at other times being blissfully absent. 

At the extreme end are those who are tortured with constant, unrelenting, mind-scrambling sound loops 24/7 for months or even years with absolutely no relief.  I fell into this group, along with two other women I know of so far. For over a year I NEVER had even one minute of silence in my head. Not awake and not in my sleep. I couldn’t even hear my own thoughts. I literally thought I would go insane or die if I couldn’t stop the constant maddening loops in my head.

I have defined the auditory memory loop/AML phenomenon as a condition distinct and separate from the conditions that have been studied so far: musical hallucinations (in which you seem to actually hear the phantom sounds with your ears), and palinacousis (in which a real sound echoes or repeats after the initial auditory experience).

Many of the sufferers who find me have already gone down the “ear worm” path but have realized that ear worm research has only covered the most superficial ground, identifying sticky songs and discussing a mostly cultural experience. 

Many of the AML sufferers have been told by their doctors that they are imagining things, or have a psychological disorder or are depressed. Hell yes! You’d be nutty or depressed too if you had the Barney the Dinosaur song stuck in your head every minute of every day and night for a year! Yes, this seems to be truly “all in our heads” but the emotional dysfunction we experience is a symptom/result of the AMLs, not the cause.

For some, the same psychoactive drugs that calm the minds of OCD patients will calm the AML sufferer. I take a small dose of the generic antidepressant trazadone at bed time. I suspect it has also contributed to my almost complete absence of AMLs in the past year since I started taking it. But I’ve also learned to maintain just the right level of progesterone, so I’m not sure how much of an impact the trazadone has really had on the AMLs by itself. 

But one woman tried trazadone and her legs went numb.

And, for at least one AML sufferer, an antidepressant (Prozac) seems to have triggered theAMLs. He has also found others with the same experience.  So taking psychoactive drugs can be a tricky proposition with potentially more risks than benefits.

THE  CORTISOL HYPOTHESIS

Throughout my struggle for answers, I have gathered various clues that have led me to formulate the hypothesis that the adrenal stress hormone cortisol may play a prominent role in this phenomenon. For those interested in the logic, the clues are these:

1. MY AMLs started during perimenopause, when my hormones were dropping and were completely out of balance.
2. The AMLs stopped when my first doctor put me on synthetic hormone replacement therapy using Prempro (horse estrogen and fake progesterone).
3. The AMLs came back a bit when I switched from synthetic hormones to bio-identical hormones (which are chemically identical to those that human bodies make).
4. The AMLs got worse when I was stressed.
5. The AMLs got worse when I tried to raise my progesterone dose to properly balance my estrogen.
6. When I tried Relora to help me lose weight, the AMLs quieted down. (Relora is an over-the-counter/OTC herbal product advertised to help promote weight loss by lowering cortisol. It didn’t help my food cravings but did help the AMLs.)
7. When I added 150mg x 2/day of the OTC supplement phosphatidyl serine to boost my declining brain function, the AMLs quieted even further. (PS is essential for cellular and neurological function. It declines as we age…and it also happens to lower cortisol.)
8. When my progesterone is low I have virtually no AMLs.
9. Progesterone (human and bio-identical) can break down along either of two paths: one leads toward the other sex hormones, estrogen and testosterone; the other leads toward the adrenal corticosteroids, including cortisol.

So my hypothesis is that cortisol is fully or partially responsible for the AML phenomenon (tho I currently have no hypothesis regarding the mechanism involved). My hypothesis is based primarily on four key clues:

• Taking supplements that lower cortisol also reduced the AMLs.
• Taking synthetic progesterone (which cannot metabolize into cortisol) stopped the AMLs.
• Taking bioidentical progesterone (which can metabolize into cortisol) increased the AMLs.
• Stress, which increases cortisol, increased the AMLs.

Since I had been under tremendous stress many times earlier in my life (including during my pregnancy, when progesterone increases to 300 times normal) and never had AMLs, I am at a loss to explain the AML phenomenon based exclusively on cortisol.  There must be other conditions in my body/brain now that didn’t exist when I was 35. 

Perhaps there is a depletion over time of a brain chemical that normally shuts off the repetitive firing of a memory. Perhaps whatever conditions in the brain that cause the repetitive behaviors of obsessive-compulsive disorder (OCD) are also involved here to some extent.

Perhaps the enzyme that breaks progesterone down into the sex hormones decreases with age, or the enzyme that converts progesterone into cortisol increases, so that more progesterone breaks down into cortisol. If that’s the case, then perhaps someone like me could supplement the sex-hormone enzyme or inhibit the corticosteroid enzyme to make more of my progesterone convert into estrogen and testosterone.

But if it is truly just cortisol, then everyone with Cushing’s Syndrome (super-high cortisol) would have AMLs, and I haven’t seen any reports to that effect.

So while reducing cortisol might help many of us AML sufferers, we still won’t know what other mechanisms are involved in creating the unique AML conditions until someone studies us. For now it’s enough to at least have one possible path to relief.

WHAT TO DO IF YOU HAVE MUSIC STUCK IN YOUR HEAD

Certainly you need to rule out serious medical issues first.

When I consulted my first gynecologist for this problem, wondering if it might be related to menopause and the craziness of my cycles, he told me: “You’re not in menopause. Either you have a brain tumor or a thyroid problem…and you don’t have a brain tumor!“ 

Turns out I WAS hormonally menopausal. But the fact is that it could easily have been a thyroid problem or, yes, even a brain tumor.  

If your cortisol levels are chronically high, you may have an adrenal or pituitary tumor (Cushing’s Disease), or other kind of brain tumor that needs to be treated.  The AML sufferer whose AMLs started when he took Prozac briefly may have knocked his neurotransmitters off-kilter.  So you have to go through all the right gates and rule out other issues before you start considering a simpler stress/cortisol hypothesis.

Here’s how I recommend you approach it:

1. First ask your doctor to help you with your quest. And if one doctor won’t walk this path with you, find another. One who will play the role of detective, who will order the relevant tests, who will noodle through the logic as you accumulate new clues, and who will formulate and test new hypotheses as you gather more clues.
2. Look for clues that might indicate a cortisol connection. Do your AMLs flare up or get worse when you’re stressed? If you’re female, do the AMLs get worse during the 2nd half of your cycle (days 14-28)?  Or did they start or get worse when you were pregnant?
3. Ask your doctor to test your free hormones (not total), ideally: (1) estradiol, (2) progesterone, (3) testosterone, (4) DHEA, (5) thyroid (all, not just TSH), and especially (6) cortisol (4 different times during the day). And at least test your cortisol.
4. If your AMLs come and go, I strongly recommend you have your hormones tested both during an AML episode, and when it’s gone.
5. If your sex or thyroid hormones are out of whack, ask your doctor to correct them.
6. And if you have Cushing’s, wait and see if its treatment will resolve the AMLs.
7. If major health issues are ruled out or corrected, and it turns out that you simply have a lot of stress and a lot of cortisol flowing through your body, then consider trying one or both of the OTC supplements that have worked for me: Relora http://www.findsupplements.com/browseproducts/Doctors-A-Z—Relora-250-mg-Capsules-90-Each.HTML  and phosphatidyl serine http://www.vitacost.com/Source-Naturals-Phosphatidyl-Serine-150-trade  You can usually find both products in any good health food /vitamin store.

If you and your doctor are comfortable with your trying the OTC solutions, I’d recommend you start with the Relora.  It works fairly rapidly for me, with one pill providing relief within a couple of hours. If that works, it tells you that cortisol may be involved in your AMLs.

Then you can add the phosphatidyl serine, 300 mg per day (I take 150 mg with breakfast and dinner). The PS seems to have a cumulative effect but takes a while to make a difference. I no longer take Relora except if I have a bad flare-up and need immediate relief.

WHAT IF MY DOCTORS WON’T WORK WITH ME?

It is possible that your doctors may not be able or willing to go beyond the conventional diagnoses and treatments and may send you on your way without any real answers.

If that happens, you can still try the cortisol reducers. But I urge you to do so responsibly. Get your hormones tested first, preferably all of them including thyroid, but at least cortisol, 4 different times in one day.

You can get home test kits that only require saliva samples.  You basically spit into a little tube, cap it and mail it to the lab with your check. The kits come with prepaid return mailers.

There are debates raging over whether saliva tests are as valuable as blood tests. Some say they are more accurate because they measure the “free” hormones that are actually available to your tissues and organs, whereas blood tests measure total hormones, much of which is ”bound” and not available for use. Either way, they are convenient and will at least give you ballpark values to tell you whether you’re in or out of the normal range.  

Ideally, you should test estradiol, progesterone, testosterone and cortisol (times 4), DHEA and thyroid hormones, just to rule out unexpected highs, lows or imbalances  (However to measure them all can be quite expensive. This is why it would be best for your doctor to order the tests so your insurance will pay for them.)

The following are some home test kits my gynecologist uses for her patients.

ZRT Labs (www.zrtlab.com) offers a cortisol-only kit for $138. http://www.zrtlab.com/Page.aspx?nid=12&action=view&category=11

ZRT offers a couple of comprehensive kits (one set for males and one for females) http://www.zrtlab.com/Page.aspx?nid=12&action=view&category=3 , which collects blood and saliva samples and tests all the sex hormones plus thyroid for $345.  (For the blood sample, you prick your finger, like diabetic testing, and let the blood drop soak into a special pad. )

Eliminating thyroid from the test brings it down to $270 for the sex hormones and 4 cortisol collections (all saliva-only tests). http://www.zrtlab.com/Page.aspx?nid=12&action=view&category=2

I’ve also found the following affordable sex-hormone test kits. My sister has used FemaleCheck. 

FemaleCheck and MaleCheck are kits for saliva testing sex hormones and are available at a number of onliine sources. About $75-$90 — shop around for price. http://www.healthhometest.com/index.php?cPath=40

SHARE YOUR EXPERIENCES

There are so few of us (that I know of) who suffer from this phenomenon that few, if any, researchers are even looking at the chemical aspects of it.

If you have songs stuck in your head, please contact me at hormonebook(at)yahoo.com. I have developed a comprehensive survey designed to collect information about those of us who suffer AMLs. I would be most grateful if you’d be willing to fill it out. Or just chat with me.

Information about your experiences will provide important new clues that may one day help researchers find the cause and cure for this crazy condition.

Thanks so much!

Pat

20 Days to Final Reconstructive Surgery

Well, let’s see what’s gone on since I last posted…

The doc filled up my expander another 50cc (total of 500 cc) and I haven’t had any discomfort since. He thought that fill would probably be enough, but last week I expressed my concerns about how much skin we’ll lose in revising the scar, tailoring the shape of the breast (it’s still squared off in front), and later reconstructing a nipple.  So he cranked me up another 75cc (total of 575cc) and both of us agreed it was good.

I am scheduled for my preop tasks on Thurs, Nov 13. And the surgery will be on November 21, the Friday before Thanksgiving.

The surgery will be at the new Methodist hospital in Mansfield.  It’s scheduled for 8:30 am and we have to be there by 6:30. Since it’s a 45 minute drive, we’ll have to leave here by 5:45 (ugh!). But the doc assures me this surgery will be nothing compared to the mastectomy. And considering that I was up disinfecting the hospital furniture the night of the mastectomy, I will probably handle this one well. It’s a drive-thru surgery, maybe 2 hours, and I’ll be home that afternoon.

This time I need to write on my forehead with a Sharpie: “Don’t give me any pain meds unless I specifically ok them.” Even tho I told the anesthesiologist and the nurse anesth beforehand, sure enough when I woke up in recovery the nurse shot me with demerol, which I could have done without.

I made the mistake of taking one Darvocet for the creepy grinding of the expander a few weeks back and regretted it. It made me feel half nauseated and on the verge of a vertigo attack for nearly a week. Not worth it.

I am definitely going to have a small implant put into the natural breast. Mainly so that if…I mean WHEN…I lose a bunch of this lard I’m carrying around, that breast won’t shrink so much and will still roughly match the new one. He will put that implant in thru a small incision in the fold line under the breast. 

For the bionic breast, he’ll go through the mastectomy scar,  pull out the expander (I assume he’ll deflate it first) and drop in the nice soft silicone implant. He will be using a high-profile implant (narrower but will stick out a little more) for that one, but says it’s next to impossible to get the same projection with an implant as you get with a natural breast. He will then tailor and revise the incision to round out the breast a bit.

He said he would be “breaking the capsule” meaning the capsule of scar tissue that has formed around the expander. So I expect to have some discomfort from that, but nothing I can’t handle with Tylenol or Aleve. The other breast will be sore as well…maybe even more than the bionic breast, since about 50% of the bionic one is numb.

The doc was ready to do the surgery sooner, since I’ve adapted quickly to each expansion. But I am scheduled to sell my hand-crafted self-improvement bracelets (called “Thingys”) at local events the weekends of 11/8 and 11/15. And I need to be able to haul my table and other booth stuff.

BTW, if anyone isinterested in seeing/buying Thingys and learning about how they can help you break bad habits and make new healthy ones, email me at ThingySystem@gmail.com  I’ve created a catalog of the designs I’ve made so far and can email that to you upon request. Daughter Meg is working on my website (www.ThingySystem.com) but we may not get it up and ready to handle transactions in time for the holidays. Meanwhile we’re handling orders the semi-old-fashioned way, thru the mail.

I saw the oncologist again 2 weeks ago. He and I had a lovely visit. He explained in detail the implications of the pathology findings from my mastectomy. He addressed each factor mathematically and statistically, drawing org-chart-ish logic trees on a yellow pad, and showing how each feature of my tumors impacted my risk of recurrence. When he got to the end, he showed how his logic ruled out radiation…and hormone therapy as beneficial options for me. The only possible therapy that might impact my odds was chemo, and he agreed that its use would be primarily to kill imaginary breast cancer cells I might have. He agreed that my decision not to use chemo was a perfectly reasonable one. I hadn’t been too sure about him at first because I couldn’t read him. But now I see that he is sweet and very logical and that’s really refreshing.

I go back in December for bloodwork and then a visit with him before the year is out. As broke as we are, I’m getting all the big medical tasks wrapped up before we have to start all over with new deductibles and out-of-pocket maximums. I imagine the nipple reconstruction will be in mid-late Dec as well and then I’m done.

Then this blog can move on to other interesting health and hormone topics.

One Month Since Mastectomy

I have to say things are looking good now. After the 75cc fill last week, I was miserable for a few days, partly because of the grinding sensation against my ribs and later because of the dizziness from taking that one little Darvocet.

I did fine on the trip to Arkansas, but made a point to take ginger pills when riding through the twisty-turney hills with someone else driving. But I’d say my head was messed up for nearly a week from that one pill.

Yesterday I got my 3rd fill. And as I’d guessed, it took only 50ccs to get the expander implant to its design capacity of 450ccs. However, the doc says he can still expand it lots more.

I asked him about the ridge line that I can feel in the breast. When I wake up in the morning it crosses near the top of the breast (more north-south), but after I’m up for a while, it is mostly horizontal (east-west). Looking at a sample implant, it appears this ridge I’m feeling is the edge of the reinforced oval-ish area that is on the upper slope of the breast. Inside that is the circular port where the doc injects more saline each fill.

This time the doc filled the implant first, then drew out the fluid that had accumulated outside the implant. He got some fluid from the bottom of the breast near the armpit, but really hit the motherlode on the cleavage side. He said it was a good sign that there were two separate pockets of fluid instead of one big pocket. It means the tissues are healing inside there.

In case I didn’t describe the process previously, here’s the way it works. For removing the fluid, the doc injects a bit of numbing medicine, which I don’t typically feel at the skin level. I may feel a little pressure or sting deeper inside but it only last a second. He may take a small tool to puncture the skin or just use a big syringe with a wide needle that’s dull on the end so it won’t poke a hole in the implant. Then he just starts sucking fluid out with the syringe, sometimes moving the needle around to get into other pockets, sometimes pushing on the breast to push the fluid toward the syringe.

For the fill: The doc uses a little “stud finder” to locate the metallic port in the implant. He marks the spot with a pen, then injects that spot with some numbing medicine. Again, I don’t feel the needle going in (because the nerves to the breast were cut in the mastectomy) but feel some stinging deeper inside the muscle.

Then he puts a needle with a little tube into the port where he marked the spot and connects that to a special syringe which is also connected to a bag of saline. There’s a valve on the syringe so he can either: (a) draw more saline into the syringe from the bag, or (b) squirt the saline into the implant. He can actually flip back and forth if the fill takes more than one syringe full of saline. When he’s done, the tube/needle come out of the port and they put a little bandaid on the spot.

This time I feel fine. I’m sore and my chest wall seems to burn a little all the time, and the muscle on top is tender. But it’s not so bad that it’s all I think about. In fact I don’t think about it unless I am active and either jostling it or using the muscle on that side. I rarely feel any of the bubbling, grinding weirdness now, which is a blessing.

My plan is to go back next week for another 50ccs. The right breast is already bigger in volume than the natural breast. But we need extra skin for the nipple reconstruction and also to create a little bit of natural droop, if possible. So I want to stretch as much as possible up front and then give the skin a month to surrender a bit.

We’re thinking the final implants will go in maybe the week of November 17. Tho the doc said he could put them in as soon as 2 weeks from now.  I have 2 events where I’ll be selling my “Thingy” self-improvement bracelets on the 2nd and 3rd weekends in Nov, so I didn’t want to be just coming off surgery when I’ll need to be hauling a bunch of stuff around.  Besides, I really do want to give the skin as much time to stretch as I can and still finish the whole process this year.

The final surgery will involve, for the right breast, opening the same incision from the mastectomy, removing the expander and plopping in the nice squishy silicone implant. On the left, the doc will make a small incision in the fold at the bottom of the breast, tuck the silicone implant behind the existing breast tissue and sew me up. 

This will be a short day surgery. He said they can use an airway assist device that doesn’t go down my throat but helps the anesthesiologist ensure my breathing. If it were a surgery that required repositioning my body, they’d have to use a more stable breathing tube down the throat.  

Interestingly, it seems that after each expansion it only takes maybe 4 or 5 days for the skin/muscle to soften up. I have been rubbing lotion on it twice a day to keep the skin pliable, which seems to be helping. So maybe another 2 fills will do it.

And it seems as if the worst of it is over now. So I’m happy about that.

BTW, for anyone who did not get my email, please check out  www.armyofwomen.org  , a program (supported by Dr. Susan Love and Avon) conducting multiple studies of (ideally) a million women of all types and ages, with and without breast cancer, in hopes of determining the causes of the disease. 

Go to the Volunteer link, then “How you can help” and register. There will be studies that only require you to fill out questionnaires. Others ask that you mail in samples (saliva, urine, toenail clippings, breast milk, house dust, etc.) in provided kits. All you do is register and they will email you when they need subjects for studies. You may not qualify for all the studies, but any time you can participate will help add to the knowledge base.

Have a wonderful weekend.

Over the hump? 21 days post-mastectomy

After breezing through the recovery from the mastectomy and initial reconstruction and implant expansion, I hit a wall this week.

To recap: On day 17, the doc drew a lot of fluid out from around the implant and injected more saline into the implant, hoping to fill the breast cavity and minimize the space for fluid to accumulate and to increase the stretch of skin and muscle. The next day, (Day 18) the pressure/grinding sensation from (apparently) the expanded implant against my ribs was really starting to hurt…and for me to say that means others would be in real pain.  The muscle on top was sore, as I’d expect. But that didn’t bother me nearly as much as the moving, grinding bubble (or whatever it is) deeper in the breast. So I took an Aleve during the day, and another at bedtime.

Night 19 was the worst night I’ve had so far. Even with an Aleve at bedtime, I was awake off and on all night. To make matters worse, I had dull pains in both my upper legs near the hips. It was just enough to keep me from getting comfortable. I’ve never had such pains and worried that they might be associated with the pain killers.  Fortunately they were gone after I was up and did not recur last night (night 20).

Yesterday, Day 20, I broke down and took one of the Darvocets (100 mg). The breast wasn’t hurting much but I wanted to test drive the medicine while I was awake in case I needed to take it at night.  I made sure I ate something first to prevent stomach problems/nausea.

Well, let me just say that I will NEVER take Darvocet again. When it hit, it hit me like a ton of bricks. And not in a good way. My head started to drift off spinning and I felt slightly nauseated and dopey. I had to stop what I was doing, lie down and stay still for the next 4 hours till it wore off. And even then, the swimming-head, vision/motion-sensitive sensation has not completely gone away today. It feels the way my head has felt going into or coming out of a vertigo attack, and I never EVER want to get one of those again.

This is not the best news, considering that we’re heading out tomorrow morning for a 7-hour roadtrip to Arkansas. I hope it passes completely by then. And in case it doesn’t I’m taking along my arsenal of meds for nausea and vertigo.

At any rate, today, Day 21, the pressure has eased up on the breast and I actually had a pretty good night’s sleep last night… with no pain meds at all. I didn’t try to sleep on my right except briefly a couple of times to relieve the left side. And I put a pillow between my legs, which felt pretty good. No more leg/hip pains so I hope that was just a fluke.

The breast is bubbling/moving around again more than it did after the fill on Day 17 but it no longer draws my attention to it all day long…only when I move a certain way.  I was thinking of calling the doc to get in to see him today, but decided to leave well enough alone.  I have an appt to see him next Thurs and will leave it at that for now.

I think I’ll go give myself an early allergy shot just to make sure there are no allergy contributions to my swimmyhead. And I need to finish packing.

Have a great weekend everyone.

Breast Reconstruction: Save some pain meds for the implant expansion

Yes, this is the tough girl who took no pain meds after the shot of Demerol they gave me without asking in Recovery…who still has the full bottle of Darvocet in the cupboard…who only took an Aleve in the morning and one at bedtime for the first few days after surgery then quit because I didn’t need them.

Yes, I am now recommending that anyone who is about to have breast reconstruction after mastectomy save some (or get a refill on) pain meds for the tissue expansion process…if you like to use such drugs. Or, if you’re like me, keep some of your over-the-counter pain pills handy.

I’m not saying this hurts worse than immediately after the surgery, because it doesn’t. But it is — or at least can be, based on my experience — as disruptive.

For me I think it is that this was unexpected. I knew I’d have pain of some magnitude after surgery, and trouble sleeping. I even expected to have some discomfort during the expansion process, and I was even prepared to grit my teeth and soldier thru it at an aggressive pace to get it finished as quickly as possible. But I didn’t expect the TYPE of discomfort I’m having now at Day 18.

I’ve talked about the creepy, funnybone kind of feelings from inside the breast that have been bugging me when I move, especially leaning forward or to the side. Well, yesterday the doc pumped up the expander implant and removed a bunch of fluid from outside the implant. The right breast is now noticeably bigger than the left breast, which is good because we want the skin overstretched to get a little natural sag and to provide enough skin for the nipple reconstruction.

Now, however, when I move, it feels as if there’s a wooden bar inside my chest rubbing and bumping back and forth across my ribs.

I had planned for skin-stretching pain, but because the nerves were cut during surgery, all but a rim of skin around the very edge of the breast mound (and in my armpit and side) is numb. So skin pain is a non-issue since the tape is gone. I didn’t feel the numbing shot the doc gave me on Day 5, either on the skin or inside, but yesterday on Day17, I felt a little stinging sensation deeper inside, presumably in the muscle.

I had also expected pain from that upper pectoral muscle that is being stretched over the implant. And I do feel discomforts from that, tho they kind of fade to the background unless I’m using the muscle or push on it and can tell it is tender…more so since yesterday’s expansion.

But I didn’t expect that deep, rubbing-against-the-ribs kind of discomfort/pain.  It’s not even clear to me whether this is a real pain or an enhanced funnybone feeling. Maybe a combination. In any case I took my first Aleve since about Day 5, hoping that some part of the sensation would be blunted with the pain medicine. I think it helped. 

Nevertheless, I had the worst night’s sleep last night that I’ve had since that first night in the hospital with people and noises waking me up every 20 minutes. Why? I’m not sure if the breast was actually hurting and woke me up, or if I shifted and the apparatus in there moved and woke me up with its weirdness. Either way, I was awake a dozen or more times during the night to find a comfortable position. Even my old reliable left-side position only worked for a while.

Of course, since I took the Aleve around 5 or 6 yesterday evening, it would have been wearing off in the early morning hours, which may have been when I started to toss and turn. So tonight I will take one at bedtime. I haven’t taken one this morning yet, but I think I may go ahead and do that now so I’m covered for the daytime hours and will be ready for another at bedtime.

I have a high tolerance for pain but a low tolerance for annoyance and distraction. As long as a pain doesn’t annoy or distract me, I can ignore it. But this new thing is both annoying and distracting. For others, it could very well be experienced as pain, possibly equal to (tho different from) the pain following surgery.

So, for those who are planning to have breast reconstruction, I recommend that you keep some of your favorite pain meds handy for the expansion periods. 

I have to assume that it is worst after each pumping up and will ease off as the skin and muscle stretch and adjust to the the new mass. I don’t know how much bigger this expander will go, but I suspect we’re not too far from its capacity. I’ve had 2 fills now, and during the first one the doc thought he had me near capacity. But he was thinking it was a 350 cc and it was actually a 450 cc. If I was at, say, 325 after the first fill and he put in another 75 yesterday, then I’m around 400 now. I don’t know if he’ll be less aggressive now and do smaller fills or  if he’ll just do the remaining 50 cc next time and then send me off to wait for my body to adjust.

At least I now know what to expect. Who knows, I may even open that bottle of Darvocet at some point.

…or not. We’ll see.

Update – Day 17

Just a (relatively, for me) quick update. I was so annoyed with all the weird feelings inside the bionic breast that I called to see if I could get in to see the plastic surgeon sooner than my Thurs appointment. They fit me in this afternoon (Monday). Turned out I had quite of bit of fluid accumulated outside the expander implant and that was causing some of the discomfort (but not the weird feelings).

The doc removed about a half-cup of fluid from below the implant. And that really helped a lot. I hadn’t been sure whether I was really feeling more discomfort or if the burning from the tape adhesive previously had distracted my attention from the discomfort in the breast itself.  With the fluid gone, a lot of the discomfort was gone too.

However…he also pumped up the implant quite a bit more. So it isn’t making as many of the creepy sensations (I told the doc they’re like hitting-your-funnybone weird), but now the muscle is a bit sore because of the increased pressure on it. Theoretically, as it stretches, it won’t hurt so much. I feel it everytime I take a breath. Actually, it hurts less, or not at all when I sit up straight, which I need to do anyway. So that’s a win-win deal.

Now the right breast is bigger than the left one. But it’s good that it’s stretching this much already. It means we should be able to get the whole reconstruction done before the end of the year.

The new breast still feels a tad bit weird, so I may try wearing a bra even when I’m at home to see if that external pressure helps relieve the creepiness. Fortunately this is only a 2-month process. The doc assures me the silicone implant will feel very soft and natural.

I got a call from the general surgeon just a little while ago. He got the pathologist’s addendum to the confusing earlier report that made it sound as if the cancer was all over the breast he removed. Her addendum says that the total amount of DCIS (ductal carcinoma in situ) was 1.5 cm in diameter, and the two spots of invasive cancer were inside that 1.5 cm tumor.

That’s a tremendous relief in that it tells me the scans accurately estimated the size and extent of the cancer in that breast. That also tells me that when all those same scans found nothing unusual in the other breast, they can be considered pretty accurate in that finding as well. It doesn’t mean there aren’t tiny tumors too small to see with any of the tools, but there was nothing the best instruments could detect at this time.

The doc also said that the tumor was HER2/neu positive. That means the tumor cells are more aggressive. It also means that they would respond to a chemo drug like Herceptin. However, like a lot of these drugs, Herceptin has some hefty potential side effects, the big one being congestive heart failure.

I don’t know what the oncologist will say, whether he’ll recommend my taking Herceptin. But I will decline. Since all the known tumor cells are theoretically gone now, the drug would be given on the premise that there might be bits of cancer that got away or formed independently. Using that logic, I should take every known drug and chemo agent and nuke my whole body in case I have some bits of cancer elsewhere.

The information about HER2/neu is good to have, tho, for future reference. And I hope I will never have to use it.

Mastectomy Recovery – Day 16

NOTE: Today’s post includes descriptions of my recovery experiences for those who may be about to have mastectomy, as well as the latest news.  For friends and family checking in, you may want to just scan for the info you want and skip over the rest.

It’s now 16 days since my mastectomy (right side) and I feel great…with some annoyances, which I’ll go into later.

Let’s see, on Day 5 I was given the okay to drive and on Day 6 drove myself to a friend’s dad’s funeral.  Driving was no problem, except when it came to looking for cars in my left side blind spot or backing up. The twisting motions to look backwards seemed to put some strain on things and so I relied a little more than I like on the side and rearview mirrors alone.

I still had both drains in at that point and was wearing them in a pouch made by pinning up the hem of some men’s undershirts. That put them within easy reach for emptying and the fold covered the tubes under my arm so I never got my arm caught in them. But going to the funeral meant dressing up.  So I wore a sort of high-waisted, flowing dress that could serve well for maternity purposes, and just carried a sweater over my arm in front of the squared-off breast and the lumpy drain pouch. Nobody seemed to notice anything was amiss.

When I was at home, I just always wore one of those undershirts with the pouch, either by themselves or under another shirt. On Day 15 when I went for my checkup at the plastic surgeon’s, I tried something different: I stuck the one remaining drain bulb into my bra cup on top of the wanna-be breast with the tubes wrapped around. Of course it freaked the doc out a bit when he first saw these strange grooves winding around the breast, until I explained.

And finally, when I went back on Day 12, I just pinned the bulb to the inside of my shirt in the armpit area. I wouldn’t want to go around too long with that grenade in my armpit but, it was fine for the short time till the drain came out.

The top drain came out on Day 5. It didn’t hurt at all; the doc used the kind with straight tubing, so there was no ball inside me that had to be pulled thru the incision hole. it just felt a little slithery coming out.

The doc also added some saline to the expander implant at that time to help stop the burping/sloshing/buckling I was feeling coming from the expander.  He gave me an injection of numbing medicine but I didn’t feel that needle and probably didn’t need it because the area is already numb. He was very pleased that I was pumping up so fast and the tissue was still returning to softness quickly. He has had me massaging the breast with lotion to keep the skin supple and flexible. It’s helping my hands too.

The bottom drain continued to fill. I’d hoped to get that one out on Day 10 but there was still a sufficient amount of drainage to warrant leaving it in. Plus there had been a clot in the tubing so it wasn’t draining as much as it needed to.  The doc got that out and had me come back 2 days later on Day 12. I didn’t feel anything at all when the bottom drain came out, presumably because of the numbness.

By Day 12, I was dying to get the drain out because the soreness under my arm had become more bothersome than the pain after surgery. My skin around the drain felt like it had been burned. I even started taking Aleve again, after having stopped all pain meds a few days after surgery. Turned out to be an allergic reaction to the adhesive on the tape around the dressings.

After the second drain came out on Day 12, I still felt the burning soreness, but not from the drain hole, as I’d thought: it was from the tape around the dressing.  So I tried minimizing the amount of tape used to hold down the wad of gauze, and I tried putting the tape in places that weren’t already sore.

I discovered the hard way that the drainage was still coming out of the drain hole. It soaked thru the gauze and my shirt that first afternoon after the drain came out. So at bedtime I packed extra gauze over the hole (with a dab of Polysporin), but had no soak-thru overnight. So I thought it was done draining. But Noooo. I got my first independent shower (no balls or tubes to be managed, yay!) the morning of Day 13, but by the time I got in to see the general surgeon for my checkup that day, I had soaked thru the new dressing…and my bra…and my shirt.

So the GS re-covered it with a ton of gauze and plastic tape. And by the time I got home later that day I had big red welts everywhere the tape was. I pulled off that dressing and put a wad of gauze on with just one little strip of tape. Still it was sore even where the little bit of tape was, but by the next day (Day 14) the drainage was down to a tiny dab. So I just took the dressing off and decided I’d let it drain onto my t-shirt and I’d change to another if it got too wet. But the hole didn’t drain at all after that and now the only little bit of soreness I feel is right on top of the drain hole, and only if I touch it.

The GS had had another converstation with the pathologist who had noted the “extensive DCIS” in her report, but still had no answers as to what that really meant. I told him that I mainly want to know how her findings might relate to the other breast. We had mammogram, sonogram, CT and MRI all saying there was a mass of DCIS about 1.1 cm in size (dime sized) in the right breast, with a couple of tiny spots of invasive cancer inside that same 1.1 cm space.  So did the pathologist find considerably more than that amount of cancerous tissue that did not show up in any of the scans? Or did she just see many different slices of the same 1.1 cm tumor mass? 

If she found way more cancer than any of the best scans saw, then my all-clear reports of the other breast from these scans aren’t worth squat.  The GS has asked her for another summary that boils her findings down to the kind of facts we/I need. For example: What was the total size of the cancer mass?  And was it all confined to the one known area or was there cancer in more than one area?  He will let me know when he gets more info from her.

He has also not yet gotten the HER2 genetic test, which will tell us whether these cancer cells are overexpressing the genes that normally cause breast tissue to grow. If the tumors are positive for the HER2, it would mean that they might respond to the chemo drug Herceptin. But since the tumors are theoretically gone from my body now, this is not applicable. Also, Herceptin carries a lot of serious baggage with it in terms of side effects like congestive heart failure. So I would be reluctant to try it even if I had justification.

The path report noted that both the DCIS and the invasive tumors were just at the bottom end of the middle category for tumor growth. 0-10% is the lowest/slowest growing tumors, 11-30% is the middle and mine were at 12%.  So while they weren’t the slowest growing tumors, they weren’t in any big hurry.

I asked him to explain why the DCIS was mildly (3%) estrogen positive but both of the invasive tumors were not responsive to any hormones. He said that the DCIS cancer had mutated into the two little invasive tumors, and in mutating, the cells apparently got tougher/meaner and lost their need for estrogen to fuel their growth.  It means that while hormone blocking therapies might slow the DCIS a tiny bit, they’d be useless on the invasive tumors. (Which is irrelevant at this point because we assume with the removal of all the known tumors I no long have cancer.)

I asked him about having to avoid needle sticks, IVs and such in the right arm (since he removed a couple lymph nodes). He said it’s not a big worrisome deal. However, I should always try to get blood drawn and have IVs on the left arm unless they just absolutely can’t get what they need. Then it’s okay to use the right arm. I need to learn more about how the removal of just 2 lymph nodes affects my body.

As for my current status: I feel as if I have something stuck in my armpit all the time. That, apparently, is the outside edge of the expander. I’m sure that adds to the burning sensation in my skin: friction from skin again skin.  Some is likely a bit of swelling too. I really hope that is just temporary to create enough space for the permanent implant and that the silicone implant will be softer and more centered.

I have to say the expander is starting to really bug me. First there is the weird feeling of the muscle going over top of it. It’s most annoying when I use that muscle.  The muscle is still sore of course, so I have to assume this strangeness will go away when the muscle stretches out and things heal.

But then there’s the whole gurgling, shifting, burping, buckling, and I-can’t-describe-it feelings coming from the breast when I lean over or to one side. I feel as if the implant is skittering against my ribs sometimes; other times it feels as if there’s something that gets stuck on a nerve and bites me. When I bend forward, the fluid moves to the upper part of the expander temporarily, pushing on the muscle, and that feels weird, sometimes hurts.

It’s possible that all we need to do is fill up the expander more to take up space that was filled with fluid that has now drained off. Or maybe with the drain out, there is still some fluid trapped in there making the implant float more in its space than it did before. I presume that at some point my body will encapsulate the implant and this goosey business will stop, tho maybe not till after the permanent implant is in for quite a while. All I know is that this weirdness is far more distracting to me than any of the pain has been. A couple days ago I was fairly active all day and I found myself holding onto the bionic breast any time I had to lean over because otherwise it felt too creepy. I can’t do that for the rest of my life, so I really really hope this is just temporary.

As for sensations, the breast skin is completely numb down to the lower crease. I have feeling only about 1 inch in from the center and only in some areas: the farther up you go in the center the more the numbness goes all the way down to the chest and even over a bit toward the base of the other breast.  On top, it’s numb in an arc slightly above the top edge of a bra. And in my armpit, the numbness goes about halfway back on the upper part; not so far back toward the bottom.

I do sometimes have that tight feeling along the bottom fold of the breast like I’m wearing a bra, when I’m not. But not too often. Or not so that I even think about it. The main things that draw my attention are the fullness/friction in my armpit, the soreness and creepiness of the raised muscle on top and the weird movements from the expander and fluid.

Pain? Now that the tape is gone, I can’t say I have anything I’d remotely call pain, except for those isolated moments when the breast bubble moves with my position and something hits or pulls on a nerve. It’s like a bite or pinch and it goes away virtually at the same time I register it.  Early after the surgery, I had what I described to the doctor as “phantom nipple” pains. Not really pain, but little nerve twinges that seemed to originate from the center of my breast where the nipple would be. 

The soreness/tightness I feel from the muscle occasionally is like when I’d go for a walk and decide to run a bit when I wasn’t really in shape for running. I’d get a mild cramplike feeling in my chest briefly, presumably my heart muscle straining. That’s what this feels like, only on my right side. I don’t feel it very often, tho now that I’m writing about it, I think the sensation may be there almost all the time but just so mild that I don’t even notice it. I may only notice it when I use the muscle or put extra pressure on it by moving a certain way.

Sleep? I still can’t comfortably sleep on my right side for any length of time. I roll over there for a few minutes at night just for a change, but soon shift back to the left side where I can sleep soundly. I no longer need to sleep with pillows elevating my head and chest. As long as I’m on my left side, I sleep fine. Tho I am still using my fattest pillow to give me a little bit of elevation. And I have extra pillows to the right of me in the bed so I can tuck one or more around me when I turn onto my right side to take the pressure off the breast. I personally recommend feather or feather-like pillows that will sculpt and hold a position rather than the springy foam pillows.

Mentally/emotionally? I accept the “cured” declaration with some reservations. I have dodged a bullet and will forever be more aware that I’m am living in the line of fire. I still see myself as a healthy person; however, I know there are more things I can and must do to optimize the healing resources nature gave me to promote wellness and to fight off disease and frailty.

I am focusing more on a healthy diet, filled with fresh or frozen vegetables and fruits, with only moderate portions of protein and carbs. It’s basically the diabetic diet, which everyone could probably benefit from. My gynecologist called to check on me last week and was telling me a new study at UCSF by Dean Ornish has shown a definite connection between healthy lifestyles (low stress, moderate exercise, and diets high in fruits and vegetables, low in fat and sugar) and the amount of telomerase, the enzyme that protects chromosomes and cells, extending their lives…and ours.

I still need to get more exercise; I’ve been way too sedentary since my surgery. I didn’t want to go walking out in public because of the whole drainage apparatus hanging off of me. I thought about mowing (the parts that our sweet neighbor didnt do with his riding mower) last week after the drain came out, but still had an open drain hole and thought that blowing debris all over my body was probably not the smartest thing just yet. So I moved the stepper back into the house from my office and got on that this morning. I did a little stepper and then a little laundry, then stepper, and something else. But at least I kept moving for about 30 minutes.

I am very thankful for this experience and for the wisdom it has brought to me. I will continue to learn from it. And I am most thankful for all of you who have walked with me on this journey.

Late-breaking news: The pathology report is in

I just heard from the surgeon that the pathology report showed my lymph nodes were negative (no cancer in them). The blood vessels were also negative and the margins were clear, meaning there was healthy tissue completely surrounding the areas of cancer (i.e., he got it all).

       There were two areas of invasive cancer, meaning the cancer had gotten out of the duct. Both were about 6 mm in size…about pea sized. So two pea-sized blobs of cancer had managed to get outside the duct.

       The only thing that detracts a tiny bit from this happy picture is that the report says there was evidence of “extensive DCIS.” What the surgeon can’t tell me until he talks to the patholgist is what “extensive” means in this case.

       DCIS, by its very nature is cancer that’s confined to the duct. We know from the mammogram and MRI that there was a tumor INSIDE the duct measured at about 1-2 cm in size (about the diameter of a nickel at most). But we don’t know if their idea of “extensive” is limited to the one duct sampled in the biopsy or whether there were multiple ducts containing DCIS.

       Thinking of the ducts as being like trees, the DCIS would be like cancer contained completely inside the branches where we can’t see it or touch. It could be one little blob in the branch or it could fill up the whole branch from the trunk to the tip of the branch. The invasive cancer, on the other hand, would be tumors that broke through the branches and could be seen outside them. In the body, invasive breast cancer means the cancer is outside the duct where it now can potentially reach efficient avenues of travel, such as the bloodstream and lymphatic system.

       What we don’t know is whether the “extensive” DCIS was merely the expected 1-2 cm mass contained within the one duct/branch…or was there more than that, perhaps filling up more of one branch than the 1-2 cm. OR…(and this is the big question for me) did more than one duct contain cancer?

       The pathologist may not be able to answer that question. The surgeon didn’t know if the slices they are looking at have any kind of spatial registration marks to tell them if all the slices they’re seeing are from the same duct or are from more than one duct.

       If there were tumors in more than one duct, then I need to consider the possibility that the other breast may eventually reveal tumors in it. If it’s just one duct, then this could have been a fluke. However, if cancer independently formed in multiple ducts in this breast, then it is possible, maybe even likely, that the same conditions that triggered them might have triggered (or will trigger in the future) similar tumors in the other breast.

       Right now, our best tools say there are no such tumors in the left breast, but if any are in there, they could still be too small to detect. Thus, I will need to be extra vigilant with my mammograms in the future to catch any new ones while they are still small and confined.

       If it turns out the pathologist can’t be more definitive and can’t tell me if it was one duct or more than one, I’ll err on the cautious side and watch the other breast carefully. In fact, I’ll be watchful either way…I just may sleep a little easier if I know this was just one lonely tumor in only one duct.

       I still feel a bit tense, so I think it may take a day or two to really breathe a sigh of relief. But intellectually, I’ve gotten the good news I’d hoped for. I can’t ask for more than that.

       –BTW, I apologize if this posts in a small font. The program wouldn’t give me line breaks and it displays in a tiny font size in preview mode.