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Miniature Christmas Tree May 6, 2017

Posted by Judy in Musings.
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Having a PET scan is very similar to getting a CT scan or a bone scan.  The tech injects a radioactive isotope into your veins.  Said isotope moves through your body, and then a machine takes a bunch of pictures.  The difference with a PET scan is that the pictures provide a look at the cellular level while the other scans look at the larger internal structures.  They inject a substance called FDG, fluorodeoxyglucose, which is a simple sugar chased down with a bit of radioactive material.  The idea is that cells need sugar in order to reproduce.  Cancer cells are greedy, and as such will gobble up sugar when it’s available.  So the isotope and the sugar circulate through the body, then the pictures are taken.  By some magic that I don’t quite understand, the end result is a set of images.  Areas that are dark are presumed cancer free.  The bright areas are those that light up because the sugar and isotope have been gobbled up by cancer cells.  So that’s your crash course on PET scans.  Now, on to my experience and results.

My veins are a train wreck thanks to chemo, so I always warn people that my veins like to behave badly, they roll and they blow.  This time was no different.  The vein she chose rolled and then blew.  She tried again on my forearm and had success.  Once she injected the goods, I sat around and watched “Love it or List it” for an hour while the sugar/isotope circulated through my body.  Once in the scanner, I had to lay still and got sooo bored.   So I sang a song that happens to be DD’s favorite:

My God is so big,

so strong and so mighty,

there’s nothing my God cannot do.

The mountains are His,

the rivers are His,

the stars are His handiwork, too.

 

Then I thought about a text message that my aunt had sent me last night saying that for some unexplicable reason, once you lay down on the scanner, you feel peace.  And you know what, I did.  I just knew that regardless of the results, I would be at peace.

Then I started getting ancy, so I started counting specks on the ceiling, and the holes in the machine, and anything else that I could see without moving my head.  They really need to have better things for patients to look at, like a little slideshow on the ceiling would be great!

Anyway, so fast forward to 5pm when I called the nurse and got the results of the scan.  She led by saying that she unfortunately didn’t have good news.  Then she went on to tell me that there’s disease in both of my axillary areas, in my right humerus bone, in my thoracic spine (mid-back, which I think explains why my fall over a month ago was so painful), and in my right groin.  She said the next step is to get a biopsy of one of the bony areas to see if this is a new cancer or if it’s the previous cancer metastasized.

This is not the result we were hoping for.  Evenso, I’m feeling very calm about the whole situation.  The nurse was even surprised at how well I was taking the news.  Honestly, I’m kind of surprised, myself.  As I’ve been thinking about it for the past 6 hours, I’ve come to the conclusion that a confluence of factors is helping me find calm.

  1.  Faith – I just know that God has a plan and that He’s got me.  Never in my life has He left my side.  Yes, there have been challenges, but I was a better and stronger person on the other side.  This is another one of those challenges that I will weather with Him sustaining me.  My aunt sent me a quote from a Dwight Nelson sermon:  “Faith takes us beyond reason, beyond empirical evidence.”  I can’t love this quote enough!
  2. Prayers – So, so many of you are storming the heavens for me and my family.  While some might say, “But you have more cancer, He didn’t answer your prayer.”, I would say that He did answer, it was just “No”, or “not yet”.  Just because He didn’t answer in the affirmative doesn’t mean He has let us down.  It would be easy to just throw your hands up and say, “I quit praying, He didn’t do what I wanted.”  But I would counter that this is the time to step up the prayers as well as changing the focus.  Yes, pray for healing, but also pray for understanding, acceptance, and faith.  So don’t give up on the prayers, keep them coming, because they work and I can feel them.
  3. Indeterminance – This might seem like a strange word to associate with calm, but in this case it fits.  Here’s why:  while I have more information now, it’s not complete information, meaning that my path is not yet determined.  We don’t know if it’s a new cancer or the old cancer.  We don’t know how much cancer there is in each area.  We have no information on it’s treatability.  As far as I’m concerned, that’s a whole lot of uncertainty, and I see no point in getting stressed out and worried.  Sure, the Grim Reaper is knocking at my door, but at this point, to door is still barricaded.
  4. Support – It goes without saying that I have the most amazing friends on the planet.  The amount of support and love pouring onto my FB feed today was unreal.  All of the texts and FB messages covered me in love.  It’s so, so amazing and I’m humbled!
  5. Hope – While I don’t have concrete information as to the extent of the disease, my gut tells me that I should still have hope.  In my gut, I feel like this is going to be treatable.  Think about the cancer in the bones.  You may be thinking, “Wait, I thought her bones were clear?”  Yep, I thought that, too.  But remember that the bone scan just shows the major structures while the PET scan is on the cellular level.  My thinking is that the size of the cancer was below the threshold of what could be seen in a bone scan, thus leading me to the conclusion that the cancer in the bones is small.  This is a good thing!  Obvs, it would be even better if it weren’t there, but that ship has already sailed and no use in trying to chase it down.  So, even though my scan lit up like a Christmas tree, it was only a miniature Christmas tree, and so, I am hopeful.

What’s next?  I see my oncologist on Monday afternoon to discuss, and I plan on having a slew of questions to throw at him.  I’m going to want to see the pictures.  I’m going to want to know how big and terrible, or not, this is.  I’m going to talk to him about alternative therapies (diet, supplements, etc) to complement the traditional therapy.  I’ll expect to leave armed with a plan of attack.

I’ll leave you with three youtube recordings of songs whose lyrics are giving me comfort, and with a quote from my Aspie 9 year old.

“Lots of cancer doesn’t mean you are dying.  Lots of cancer is just lots of cancer.”

 

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Stuck April 22, 2017

Posted by Judy in Musings.
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I started composing this post in as a story format, but I got stuck.  Then I considered writing in memo format, but I got stuck.  Then I thought about tying the post in to rain and umbrellas and deja vu, but got stuck once again.  Since the third time doesn’t appear to be the charm, I’m throwing my hands up in defeat and going for short and to-the-point.


I knew when the nurse wouldn’t tell me the result over the phone.

I swore in my head when the nurse asked if I had a follow up appointment.

I tried to remain calm when the nurse asked if  I could come in an hour.

I just couldn’t see how any of these events would lead to a good result.

I knew I would be right.

I wish I had been wrong.

The aggressive, grade 3 cancer beast is back.

 


It’s the same lobular and ductal beast that attacked me last time.  Sometime next week I’m having a PET scan to see if the beast is anywhere else in my body.  It’s pretty likely that it is not in my bones since that scan came up clear a few weeks ago.  No idea, though, whether the liver, brain, or lungs will be clear.  The scan results will be available the same day, and the oncologist, hubby, and I will get our heads together to come up with a plan.  There are two paths.

  1.  PET scan is clear = local recurrance = new hormonal meds to kills off my ovaries, and thus the estrogen that the beast so loves; possible radiation; surgery to remove the 1.5 cm nodule
  2.  PET scan is not clear = metastatic disease = a whole lot of unknowns as management of a chronic disease is an ever-changing process

While we have some info now, it’s only partial, so not much will happen between now and the PET scan.  I do know the following:

  • Today was my last day taking Tamoxifen, since it’s apparently not doing it’s job very well.
  • I won’t be doing chemo again since it provides minimal benefit against ER+ (estrogen receptor positive) breast cancer recurrence
  • I’m tired.
  • Hubby is sad.
  • I’m praying that this remains a local recurrance.

 

 

When it rains . . . April 17, 2017

Posted by Judy in Musings.
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The past three weeks have presented me with a slew of challenges.  I got a cold, which is generally NBD, except that I had a concert and I needed to be well.  Despite my best efforts (rest, zicam, fluids), I ended up with laryngitis.  Despite my best efforts against the laryngitis (elderberry syrup, honey and lemon, anise tea, warm compress on my neck), I wasn’t able to get rid of it in time for the concert.  So for the first time ever, I had to miss a performance, which sucked.

But there’s more.  The same week that I got sick, as I was running up the stairs, I tripped, fell, and ended up with an excruciatingly painful muscle strain.  As in, I was laying on the stairs saying, “Ow, ow, ow, ow!”  It didn’t matter how I moved, the pain wouldn’t go away.  I’ve heard it said that having a kidney stone and giving birth are the most physiologically painful events.  I’ve given birth to four babies, without medication, and hands down, the pain in my back was so much worse!   It’s been three weeks since my fall, and while my back is better, my movements are still hampered and stiff.  Oh, and did I mention that hubby was out of town that week?  Fortunately, my rockstar mom was visiting.  Emotionally, though, I definitely missed having my other half there.

But wait, behind door number 4 you’ll find more challenges.  During the laryngitis/muscle strain week, I had my biannual check up with my oncologist.  The scarring in my armpit had changed, becoming more spread out and squishy, and I showed him a spot where it felt like I had a string in my armpit.  He poked around and decided that it would be a good idea to have an ultrasound to see what was going on.  I’ve had my pit scanned at both of the previous check-ups, so this seemed like NBD.   It took a few weeks to get an appointment, so I went in this past Friday.  As usual, the tech did the scan, went and showed the doctor the images, then came back.  The difference this time was that the doctor came along.  After scanning again, the doctor tells me that she’d like to do a mammogram to get a better look.  In my brain I’m thinking, “No, no, no, no, no!”  This was starting to feel oh so familiar.  This is exactly how it went last time.  I did have the presence of mind to ask, “Do you see something that is of concern?”  She responded by saying that there was a questionable area which she wasn’t sure if it was just scar tissue or something more ominous, and she preferred to err on the side of caution, given my history.  I whole-heartedly agreed, but was still saying, “No, no, no, no, no!” in my head.

They took me into the mammogram room and set me up for a picture of my armpit.  Now, you must be wondering how in the world they do a mammogram on your armpit, right?  I was wondering the same thing.  I mean, generally, the breast tissue is flopped onto a flat surface and then squished to smithereens with a plastic paddle-looking thing.  The last time I checked, my armpit was not floppable!  They set me up at a right angle to the flat surface.  The side of my  chest was vertical and my arm was horizontal, with my armpit at the corner.  Somehow, the tech got my pit onto the flat surface and then squished it with the paddle thing, which also dug uncomfortably into my shoulder.  It was awkward, but way less awkward and painful than the breast mammogram.  Anyway, after several attempts, a successful picture was taken and the tech went to confer with the doctor.  She came in and said that she wanted to go to the next step, a biopsy.  And I thought, “DAMMIT!”  This doctor was much more forthcoming than the one three years ago who kept parroting, “In an effort to provide thorough care . . . . ”  She again said that she just wasn’t sure about one spot, and the thickness and dark color of the scar tissue made it hard to see what was going on, so a biopsy was the logical next step.

I went into the scheduling room with the nurse.  It was the same room where the previous doctor had informed me that a biopsy would be necessary.  The same room where I sat on the couch and waited for the doctor for what seemed like forever, trying desperately to not freak out, failing miserably.  The superstitious part of me decided that this time, I would steer clear of the couch, in hopes that the news would be better this time.

My biopsy will be tomorrow afternoon, and I’ll find out what’s going on by the end of the week.  I want to have faith and believe that this will turn out all clear, just like the bone scan.  It’s just that I’m having a serious case of deja vu, and I’m feeling like when it rains . . . . . . it pours.

The haves and have nots September 28, 2014

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This past year has seen me moving from the haves to the have nots. I started out in the “have breasts” group. I then got moved to “have breast cancer” group soon followed by the “have not breasts” group. Last week, I officially joined the “have not breast cancer” group. While I would rather have been in only the first and last groups, this particular order of events is the next best thing. And really, being counted amongst the “have nots” isn’t so bad. It’s good to know that breast cancer is now in my past and the active part of treatment is over. (I’ll have to take anti-estrogen pills for the next five years, but I haven’t started taking them, so more on that in a later post.)

As for the other “have not” group, well, not having breasts is no biggie and in some regards, life has been made easier by their departure. I’ll neither bore nor horrify you with the deets. I’ll just let you imagine how much easier it could be without “extra baggage”! 😀 Having said all of that, you may find it surprising that this week, a few new things came to live in my dresser: fake boobs and their holders. Some have asked “Why bother?” The completely vain answer: because I have some shirts and dresses that I REALLY like that I want to be able to wear. Yes, I could wear them senza boobs, but they just don’t look right, kinda like a child wearing their dad’s oversized sweatshirts: comfy, but not flattering.

So, yes, prosthetic boobs. I’m here to tell you that they are weird. There’s no other way to say it. W.E.I.R.D. I’m gonna guess that they are better now than they were 20-30 years ago, but they are still strange. They aren’t exactly jiggly like Jell-O, but they are squishy. They come in several different shapes, some that look NOTHING like actual breasts! They also come in different colors, you know, to match all of the different skin tones. You’d think there wouldn’t be much of a market for them, but you’d be wrong. There are probably five different companies that sell them and they all look just a bit different.

Going to get fitted was a really bizarre experience. For starters, most of the prosthetics slide into a pocket in the bra, so you are putting on a bra that is MUCH heavier than usual. Weird. Then you had the fitters helping to fasten the bra, as if I’d never done this before. Weird. Then came the real test, seeing what they looked like under clothing, and then hearing the fitters say, “Oh, those are great! Very natural!” Weird. I ultimately decided on a company that makes fake boobs with adhesive on the back so that they attach to the chest wall rather than sliding into a pocket. This gives the wearer some feedback so it feels more realistic. Due to the adhesive, they have to be cleaned with special cleaner and a brush after each wearing. Weird. It’s all weird, laughably weird!

Any curious what they look like? I know I would be. I’ll post a pic at the bottom of the post so those of you who are totally weirded out by the prospect of seeing prosthetic boobs can just skip that. 😉

So six months after leaving that group I guess I’m back in the world of the “have breasts” . . . sort of . . . not really . . . . let’s just pretend . . . . or not 😀

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Fake boobs, coming right up!

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Riiiiiiigggght

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Here. Weird, aren’t they!
prosthetics

Lung Leavin’ Day 2014 January 30, 2014

Posted by Judy in Musings.
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A week or so ago, I got an email from a person named Cameron Von St.James. He had come across my blog and wanted to share with me his wife’s experience with cancer. She had pleural mesothelioma, a cancer in the lungs resulting from exposure to asbestos. She ended up having a surgery that removed her left lung, and it ended up being life-saving for her. She and her husband have started to celebrate Lung Leavin’ Day on the 2nd of February (the day of the surgery) every year. Here’s what Cameron has to say about it:

“The purpose of LungLeavin’ Day is to encourage and empower others battling their own illnesses and life challenges to face their fears! On this day we celebrate for those who are no longer with us, for those who continue to fight, for those who are currently going through a tough time in their life, and most importantly, we celebrate life! Each year, friends and family gather at our house around a bonfire where we write our fears on a plate and smash them into the fire to represent conquering our fears.”

LLD-TalkingPlate

They have created a website sharing her story as well as sharing more information about LungLeavin’ Day. If you are local to them, you could likely be involved in the actual “ceremony” (for lack of a better term) and in the fund-raising. If you aren’t local, I think the idea is to take some time to think about your fears, to face them, and then to decide to not let the fear control you.

We all have fears, and we would do well to face them head on and then toss them into the proverbial fire.

ETA: Since posting, I’ve learned that you can be involved in the fund-raising by visiting Heather’s fundraising page. This interview between Heather and someone from the Mesothelioma Cancer Alliance gives more info on where the money goes and why she celebrates LungLeavin’ Day.

And so now, we wait January 12, 2014

Posted by Judy in Musings.
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Once a person receives a cancer diagnosis, there is this push to move through many appointments and tests quickly so that treatment can begin. Sometimes this is warranted if the cancer is a fast-growing one. Many times, it’s not really necessary and plays into the fear-mongering surrounding cancer in general. This leads the general populace to believe that treatment should begin within days. I have a “friend” who has said to me twice “You haven’t gotten that taken care of yet?” She even had the gall to go to my mom and say, “You’re a nurse, you know that this needs to get taken care of quickly. Why isn’t she doing anything? You need to convince her to get a move on!”

My cancer is not one that grows in a lightening fast manner. The surgeon said he is comfortable with a 3 month time lapse between diagnosis and surgery. They generally tell their patients 2 months, that way if something comes up to delay things, they are still within the safe 3 month window. I’m totally okay with that. Maybe if I didn’t like the surgeon, I’d feel differently, but after meeting him this week, DH and I decided that we liked him quite well. It’s a good thing, too, since we had to wait almost THREE HOURS to get in to see him! I have no idea why he was running so far behind! But, once it was our turn, he did spend half an hour with us explaining the different surgeries, answering our questions and generally impressing us with his bedside manner and competence. He even said that he would be happy to answer any questions again at a later time. We could just leave a message for him and he would call us back in the evening. I like a doctor who is willing to explain and re-explain things.

For the moment, we have a tentative surgery date of February 11 with the surgery being a lumpectomy. Generally, lobular cancers aren’t good candidates for lumpectomies since the tumors tend to not have clearly defined margins, making it harder to be certain that the entire tumor has been removed. In my case, the surgeon feels that a lumpectomy is a good option because the tumors are both small and in the same quadrant. I’m not fully convinced. There’s a small part of me that worries, “How will he know that he got all of it and that he didn’t leave some skinny sliver behind?” Ultimately, I do trust his judgement, but it is hard to not be doubtful. In my case, he plans on taking a larger amount of tissue than necessary to give a better chance of having clear margins. Once the tissue is removed, the tumors will be dissected and analyzed more thoroughly. The margins, or edges of the tissue are also going to be analyzed to make sure that there aren’t any cancer cells there.

He spent a good amount of time explaining how the lumpectomy would go and what the cosmetic outcome would be. I was very curious about this, wondering how a portion of the breast could be chopped out without it looking all bizarre after the surgery. It’s partly that the body is amazing and will fill in the gap, and partly the way that they perform the surgery and close up the wound. They’ll bring the edges of the breast tissue over the cavity and sew it shut. Then some fluid will be placed in the cavity as a place holder. Over the course of 6-8 weeks, the body will create more of this liquid (frankly, I don’t really remember what the liquid is called). During the liquidy time, there will be lots of sloshing sounds coming from the breast . . . I find that amusing! The liquid will eventually become more gelatinous, and then scar tissue will start to form to fill in the cavity. There will always be scar tissue there, but it will soften up with time. I’m in awe of how the human body can repair itself in that way!

The other part of the surgery is going to be a sentinel node biopsy, whose purpose is to see whether or not the cancer has spread to any of my lymph nodes. The idea is to figure out to which one or two lymph nodes the cancer from the primary tumor is likely to have spread. These lymph nodes will be removed and analyzed by the pathologist to see whether or not they are malignant. If the pathologist finds cancer in the nodes, then chemo will definitely be in the cards in an effort to kill off any errant cells that may have gone further afield. Based on the results from all of the scans (MRI, bone and CT scan), the surgeon is pretty confident that there won’t be any lymph involvement. This is good. Nonetheless, we are still doing the node biopsy.

A few hours before the surgery, they will be injecting a radioactive isotope, technisium 99 (the same one from the bone scan), into the breast tissue right near the tumors. They will also be injecting a blue dye in the same area. During the biopsy, the surgeon will check three things:
1) he’ll look for the radioactive lymph nodes
2) he’ll look for the nodes that are blue from the dye
3) he’ll palpate the nodes to see if any are swollen or seem suspicious.

Using this combination of techniques means he’ll be removing the correct lymph nodes with 100% certainty. I like those odds.

Now, if any of the nodes come back cancerous, in addition to the chemo, I’ll have to have another surgery in which all of the lymph nodes in that area would be removed. Previously, I had the idea that there were five lymph nodes in that area. I was wrong. There are 21 nodes! If I were older, like over 50, they wouldn’t think about removing all of the nodes. But, the fact that I’m young means that the outcomes are better if all of the nodes are removed. I actually don’t remember the reasoning the surgeon gave for this. If it does come down to needing the second surgery, I’ll look into finding out the reason. For now, no need to clog my brain up with that info!

I also asked who exactly would be in the operating room. I’m getting treatment at a teaching hospital, which means there’s a chance a resident would be performing the surgery. This particular surgeon doesn’t allow residents to perform the breast surgeries because of the importance of having a good cosmetic outcome. That’s good for me. But it did make me wonder . . . . how exactly do breast surgeons get experience if they aren’t allowed to get experience while residents? Hmmmmm. Anyway, so the surgeon I met will definitely be the one wielding the scalpel.

We also talked about anesthesiologists and the importance of preserving my vocal cords. We asked if there was one anesthesiologist that he preferred over another. Fortunately, he said they all were good. Then he said, “There are also nurse anesthetists.” When we asked if he would be comfortable with them, he said, “Most of them.” Hmmmm . . . .most isn’t really good enough for me. I must’ve raised my eyebrown when he said that, because he followed his comment up by saying if he saw that a less-than-ideal nurse anesthetist was assigned to my surgery, he would talk to the anesthesiologist and request that the nurse not be involved in this case. So, I feel pretty good about the people that will be involved with the surgery.

Now, there is one more issue that could be a game changer . . . . .the genetic testing results. If you recall, my blood was sent off to be tested for the specific BRCA1 mutation that some family members have. Those results came back last week and I do NOT have that particular mutation. Frankly, I was quite shocked as I was fully expecting to have it. The lab is now going to run the full testing, which will test for all of the other BRCA1 mutations as well as the BRCA2 mutations. The first thing that the surgeon said when he walked in was that he wanted to wait until the results of the full BRCA testing came back before doing the surgery, since his recommendation would be to do a bilateral mastectomy if the results came back positive for a mutation.

To recap: if the results are normal or negative, then the surgery will be a lumpectomy. If they come back positive, then I have to make a big decision: bilateral mastectomy or lumpectomy with super-vigilant monitoring for the rest of my life. So yeah, the genetic testing could be a big game changer. Those results won’t be back for another week or two, meaning that the next few weeks will be relatively normal. I’ll be filling my days with the unpredictability of stay-at-home mom-dom. A welcome unpredictability that is perfectly unsurprising and manageable, which is much more than can be said for the post-diagnosis state of affairs.

And so now, we wait.

Who’s in charge here, anyway? January 3, 2014

Posted by Judy in Musings.
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Healthcare in our country is a train wreck. Some people have great coverage. Some people have terrible coverage. Other people think they have great coverage only to find that they, in fact, don’t. Many people think that their doctors are making health decisions for them when in reality, it is the insurance companies. Case in point. Several years I got physical therapy for my back. I had to fill out these questionnaires which then got sent to the insurance company so that they could decide how many sessions I could have. Long story short, they didn’t approve very many, even though the therapist argued with them that my issue would take some time before seeing any improvement. They didn’t care. I didn’t get the sessions I needed and the problem went unsolved. Thanks alot, health insurance!

And then there’s the issue of pre-approval. Even though your insurance technically will cover a particular treatment or exam, you still have to have pre-approval from the company before you get the exam. (Well, you could go ahead and do the exam, but then you would end up having to foot the very huge bill.) You may recall that I was supposed to get a PET Scan to determine the cause of the elevated liver enzyme (alkaline phosphatase). My insurance declined the request stating that 1) my cancer didn’t appear to be advanced enough to warrant the test and 2) I didn’t have a CT Scan showing an abnormality with inconclusive results. Instead, they approved a bone scan and a CT scan. A quick google check revealed that a PET scan can be $8000, a CT scan $5000 and a bone scan $1000. It would seem that the insurance company is making decisions on my healthcare from a financial perspective. It’s cheaper for them to approve the other two tests than to approve a PET scan. Who knows, maybe a CT scan is just as accurate as a PET scan. In any case, when the denial came through, my medical oncologist said, “Okay, let’s do the CT and bone scans, then.”

So I ask, who’s in charge here, anyway? SMH

The memoranda December 29, 2013

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MEMO

TO: The Little Boss
FROM: Mommy
DATE: December 20, 2013
RE: Weaning

It has been brought to my attention that the weaning process needs to begin. Over the next few days, we are going to need to step down your milk intake and step up your intake of solid foods. Now I know that you aren’t all that excited about solids, but in the interest of not starving, I think you ought to reevaluate the merit of solid foods.

My plan is to first do away with the nighttime feedings. To that end, daddy will be taking care of you at night. Don’t have a meltdown, though, he’ll take good care of you, even though he can’t provide you with any milk. And, as an added bonus, you’ll get to start sharing a room with your oldest brother. Won’t that be fun? (Psst! He has a lot of fun toys in his room! 😉 )

After a few nights of night weaning, we’ll cut down from 2-3 daytime nursings to just one in the morning right when you wake up. A few days after that, we’ll start decreasing the amount of time you spend nursing. So we’ll go from 3 minutes per side to 2 minutes to 1 minute and then zero minutes.

I know, it totally stinks that we have to do this on such a compressed schedule when neither of us is ready, but it’s really important, so I guess we get to take one for the team, okay? Hopefully this gradual method will work out well for both of us and we’ll be able to have you weaned in about 10 days.

Besos, amorcito!

MEMO

TO: My body cells
FROM: Me
DATE: December 20, 2013
RE: Decreasing milk production

As you may have heard, things are a bit haywire in the breast neighborhood. Some of the cells in that neighborhood have gone totally nuts and have started behaving in an unapproved manner. They are changing the appearance of the houses in certain parts of the neighborhood and are even busting out of some of the houses and trying to move in to other people’s houses. . Although several neighborhood watch meetings have been held, the local cells have been unable to find a way to boot out the rogue cells, so they have turned to outside help. The plan is to completely remove the sections of the neighborhood containing said cells. Yes, this means that many of the good cells are no longer going to be around. They are aware and are willing to take one for the team.

What I need from you cells in the brain neighborhood is to quit sending the “make milk” signal to the mammary glands. I’ve already spoken with the toddler and he is aware that he is going to be cut off within 10 days. The fact that he will no longer be sending you the signal should help with the drying up of the milk. I would appreciate it if you would also work on your own to slow down the supply in a smooth manner so as to minimize the amount of discomfort from random letdowns and engorgement.

Thank you for all of the wonderful work you have done in producing milk for my little humans over the past 6 ½ years. I’m forever indebted to you for that. Best of luck as you work to dry up the milk in the breast neighborhood.

MEMO

TO: The Little Boss
FROM: Mommy
DATE: December 29, 2013
RE: Weaning

I must say, I have been VERY impressed with how well you have handled the weaning! Granted, the first night was a disaster and so we abandoned ship. But, the subsequent nights went pretty well, from my perspective. (Daddy might have a different opinion, though!) It’s pretty clear to me that you got and understood the first memo. Within the past 9 days, you have suddenly decided that food was “all that” and are eating everything in sight. In fact, I’ve been amused to see you trying to mooch food off of anybody and everybody. This is good! You still are a little picky, but at least you aren’t spitting food out anymore. This is great progress!

The biggest surprise came this morning when you didn’t seem interested in nursing right when you got up. Instead, you just wanted to cuddle for about 15 minutes. I was planning on having tomorrow as our last day nursing, and I was getting all prepared to really savor the moments. It would seem that you had a different idea, which is okay. It’s probably better that the last nursing session happened without my knowledge, less traumatic that way.

We’ll see how the rest of the day goes, but I am optimistic that it will go well. Go team!

MEMO

TO: My body cells
FROM: Me
Date: December 29, 2013
RE: Decreasing milk production

Well, my cells, I have nothing but good things to say about you. I am, of course, referring to the cells in the brain and breast neighborhood, but only the non-rogue cells in the latter. You would think that having the toddler go from nursing 6-7 times a day to twice a day in a single day would be a huge shock to the system. But you handled it with aplomb. It only took you about a day and a half to settle into the highly decreased production rate. When I reduced the nursings in half, yet again, you didn’t flinch at all and just went with the flow, or lack thereof! I’m so very pleased that you have gotten and understood the memo.

I’m not sure whether the outside help you received was actually helpful. I suppose I’ll never really know whether the cabbage leaves or the compression band did any good. At the very least, it made me feel like I was doing something to help out. =)

I’d like to thank you for your quick adaptation to the rapidly reducing demand for milk. I can’t tell you how glad I am that I only had to “pump to comfort” twice. When I spoke with the lactation consultant, she said, “Wow! That’s really great! Your body is doing a stellar job of adapting.” Yes, yes you have!

We had a little monkey wrench thrown into the plans this morning. I was planning on nursing two more mornings, but it appears that the toddler prefers snuggles over milk. So, let’s not get off track here. Keep on bringing that production down. We need to be at absolutely nothing by the time the surgery happens in about 3 weeks, and it would be great if we could be there by the 7th, just to make sure the surgeon doesn’t try to push medication on us. Say it with me: We don’t want drugs! We don’t want drugs!

Good work, everyone! Go team!

The good, the bad and the ugly December 21, 2013

Posted by Judy in Musings.
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THE GOOD
Who wants to hear good news? Let’s get a show of hands . . . . . .alrighty then, I’ll get right to the point. The MRI results were good. The right side and lymph showed no abnormalities. The lymph on the left side also showed no abnormalities. The only thing on the left side were the two masses we already knew about. Let me state that another way: there was nothing new on the left side. Shall I say it again, cuz it’s huge? There was nothing new on the left side! The masses weren’t larger than they thought, and there were still only two tumors. I had been worried that they’d find cancer on the right side (especially since lobular cancers are prone to presenting on both sides), and that they’d find that the tumors were much bigger than anticipated and that they’d find more. What an enormous relief to find out that there was NOTHING NEW! Hallelujah! Thank you, Jesus! My dad was VERY happy to hear that the Lord had answered his prayer with a resounding “Yes!”

The fact that there aren’t any more tumors and that they are small and close together also means that I’m apparantly a candidate for a lumpectomy rather than a mastectomy. I was definitely surprised, especially since lobular cancers are harder to deal with in a lumpectomy. But, when they discussed my case at tumor board, all of the members were quite excited to have this option. The real decision regarding whether or not I have a mastectomy will come when I get the results from the genetic testing. (I’ll talk more about that in another post.)

The bad and the ugly
I knew that weaning to toddler was very close on the horizon. Obviously, nursing would be contra-indicated in the event I need chemo therapy as well as once I get started on the anti-estrogen therapy. I thought I could probably keep nursing until just before chemo would begin, which is probably two months out. When the NP said, “You’ll need to stop nursing before the surgery. The surgeon wants to start you on a medication to dry up the milk today.” I was totally blindsided. I put up a meager fight, explaining that the Little Boss would probably have a total meltdown. Rick put up a stronger fight with better reasons. So we compromised: he has to be weaned by next Friday or else I’ll need to start the medicine. So I have ONE WEEK to wean him. Yeah, it’s going to be ugly. It already was ugly last night, and I totally caved. But in my defense, I’ve pretty much been gone all week and haven’t gotten to spend much time at all with the babes, especially my super velcro baby supreme. After he had been crying for half an hour, I went into the room (I’d been sleeping on the couch) and picked him up . . . he snuggled right up to me. He didn’t even actually want any milk, just some love. I’m hoping we’ll have better luck tonight, but I do expect there to be lots of crying from the little guy. In all honesty, I think he’ll be fine and I think he knows something is up. He’s been eating TONS of solids (hooray) and has figured out how to drink out of a regular cup, a sippy cup and even my more complicated water bottle. So, he’s not going to starve, it’s just going to be hard for him at night time. *sigh* But, I do know that it’s necessary. Operating on a lactating breast is not a good idea because a)it’s harder to see what is going on and b)there’s a possibility for a milk fistula (a hole in the body where it doesn’t belong), neither of which would be good.

So there you have it, the good, the bad and the ugly. There are two more places in the process where we could get bad news: the pathology of the lymph could come back showing malignancy and the PET scan could show cancer cells in other parts of the body. But, for now, we are focusing on the good news and reveling in it. Happy dance!

Of MRI’s and Marc December 20, 2013

Posted by Judy in Musings.
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Knock knock knock

Bang bang bang

Knock knock

That’s what I recall the MRI sounding like when I got my back imaged 5 years ago. Imagine my surprise when instead of knocking and banging, I heard a whirring and very loud humming, all amplified by being in a very resonant space. Couple that with the fact that I was VERY uncomfortable, and this MRI experience was not as pleasant as the first. I will say that I felt less claustrophobic, which probably had to do with the fact that I was face down and couldn’t really see much around me. I could, however, touch the sides of the machine if I moved my arms out . . . .I made sure to keep my elbows in!

When an MRI of the breast is done, the breasts have to hang down in order for the machine to get a clearer image. As such, I was on my stomach with my arms making an “o” over my head and face supported by a padded pillow thing, similar to what a masseuse uses. Then the girls were in a rectangular frame thing that had a plastic vertical supporting bar in the middle. Holy cow, that was so uncomfortable! Not only that, the frame was made for larger people, so in order for my armpits to be over the top of the frame, they had to be hyperextended. All of that was enough to make me uncomfortable. Add to that the fact that I have a bulging disc (discovered in the first MRI) and can’t really lay on my stomach for any long period of time, and I was not doing so well. I was on an incline, so that helped. But that also meant that my knees were taking alot of the weight. After about 15 minutes, my knees were killing me, so I very carefully extended my legs to stretch them and to relieve the pressure on my back.

“PLEASE STOP MOVING YOUR LEGS! YOU HAVE TO BE STILL!”

I felt like a child being reprimanded.

“Sorry, my back is hurting me.” That didn’t really matter to them, they just wanted to get clear pictures. So, I sucked it up, tried to focus on the music and told myself that this really WAS an important test.

Speaking of music, apparently I’m the first person to request that they play a CD while in the MRI machine. Really? That’s so surprising to me! Seems like music would be a great way to pass the time. Different strokes for different folks, I guess. This time I chose Marc Anthony. In retrospect, choosing to listen salsa music in a place where you can’t move maybe wasn’t the best idea! Anyway, the crazy machine was SO LOUD that I could only sort of hear the music. By the end of the 40 minutes, my head felt all woozy and weird from all of the noise.

As if all of the above wasn’t enough weirdness and discomfort, they injected a tracer dye into my arm towards the end of the test. It was very cold and I could feel it moving through my veins and branching out to the different vessels. It was very weird!

Needless to say, I was very glad when the test was over and I could be upright. I had to sit for about 20 minutes to wait for my head to stop feeling so woozy, and then I went on my merry way.

Stay tuned for the results of the MRI . . . the results were good . . .they were very good =)