Tag: Breast Cancer

Tuesday, October 3 – Dr. Appointments, Dr. Appointments, Dr. Appointments, and Group to top it off

I had my annual physical in the morning. My primary care physician was so sorry I am dealing with this. Later, I realized she never asked me about getting my annual mammogram. The left breast has only had a recent MRI. I wonder if that counts.

We talked about my sleeping problems, and I told her the Oncologist prescribed Ambien, but I’ve only used it a few times. Are there any other options? She reviewed some and suggested Lunesta, but the same issues with that as Ambien mean it should not be taken consistently for an extended period of time. I told her I would think about it. She gave me a handwritten Rx, just in case.

I asked her if I should see a dietitian, but she wants to wait and see how I do on chemo before we go that route.  I told her I worried about my weight loss and our goal.  She said we would cross that bridge as we came to it during chemo.  I still want to reach my goal weight.  I am still not comfortable in my body.  And that is besides The Lump.

We talked about everything that had happened in less than a month, how I fell apart from my first Support Group.  She asked if I was going to go back.  Well, yes.  Just because I was overwhelmed last week doesn’t mean I can’t try to find some value in this.  My husband found value in his support group when he didn’t expect to connect at all.  I can do this.

We went over my blood work, Thyroid was a little high, I told her I actually forgot which day I was skipping a pill (my dosage for several years now has been 6 days a week, one day off).  I messed it up the week before my blood draw, and I have a feeling I took more than 7 pills that week.  It’s been a bad month.  I swear I will be better, and I have already double-checked my dosage for this week after I realized on Sunday that I had taken a pill the night before, and I had one in my hand for my “day” pills.

Then, there were some white blood cells in my urine—not a lot, and nothing grew when the lab tried to culture any bacteria. I told her the lab I went to had no antiseptic wipes. I washed as best I could with a paper towel, soap, and water, but… So yeah, I don’t plan on going back to that lab again. I was surprised that for clean catch, they had nothing!

Everything else on my labs was fine.

We agreed that I should increase my D3 to at least 2000 IU daily instead of just 3x weekly.  She said I could go higher.

I forgot to ask her about a medical cannabis card, just in case.  We’ve (husband and I) talked about how if chemo is really rough on me, this is an option.  Just the cannabis oils or edibles.  Really not interested in smoking!

I went home, did some work, and then had to turn around and return to have the echo-cardiogram.  It’s the same medical complex.  I told them I’d had at least two echoes previously at Torrance Memorial, but they said I had to do a complete baseline echo because this was my first time in their office.  They didn’t even have a gel warmer!  And the poor ultrasound tech had to sit on a metal folding chair.  I was not all that impressed with that office, but oh well.  I have a new baseline echo-cardiogram on file.

I went back home and got back to working.  I worked straight through till a little after 5 pm when we had to leave for our respective Support Group meetings.

We got there a little earlier than we anticipated, so we took a walk around the pier.  Husband asked me if the absolute worst should happen in this process, and we have to plan for my death, have I decided what I want done?  Well, yeah, we’ve discussed this before.  I want direct in-ground shroud wrapped burial.  There is a place north of San Francisco that does this.  He joked that what, I just fold you into the car and drive you up there?  I told him I had the information before, I just don’t remember where I put it so I will pull it up again and create a file.

Then he asked me about any type of service…  Wow, we’re really discussing this, right before Support Group, where last week it broke me.  Ok, I can do this, it’s life.  I think about that part, a service, or life celebration or whatever.  I don’t know, but I think if this does go south, I think my family will need something.  There will need to be a celebration of life.  Then he asks me where?  Do I have to do this up North?  No, No, it needs to be done here.  The kids are here, you’re here, most of our friends are here.  The rest of the family will just have to be inconvenienced this time instead of us.  They have to come to you and the kids.  You and the kids should NOT have to go to them to celebrate my life and the fact that it ended so much earlier than I ever planned.  Then my husband asked me if he would have a fight with my mother over this.  I told him I don’t care what she wants, this is about you and the kids and what I want.  He said good, if he had to, he’d tell her to F off.  He has my permission.  If it comes to this, he gets the easy out.  None of them (husband and kids) should have to travel because a celebration of life service for me is not convenient for the rest of my family.

Then we talked about him, I’ve always known he wants to be cremated, but he’s never said what he wants done with his ashes.  He said I could do whatever I want with his ashes.  Put them in a urn and keep them on a shelf, scatter him in the waters at Disneyland (which they don’t allow, but I’d find a way I think).  He wasn’t sure about any kind of service or celebration.  He thinks no one would attend but me and the kids.

We finished our discussion before we went in for our Support Groups.

I did admit to mine this week that I came out of last week totally overwhelmed and broken.  They were very glad I came back.

This week went much better.  I’m still pissed that I’m going to loose my F’ing eyelashes, but I can deal with it if I have to…  They were all very supportive and understanding and validated my feelings of being angry about the damn eyelashes.  I know it’s a stupid thing to be hung up on, but everyone’s got something, right?

It was a good night, and despite the apprehension of the unknown, as everyone is different on chemo, I feel better prepared now, and more in control.  My dragon is still there, lurking, but does not have the same hold it had just a few days ago.

Life is still on hold.

Monday October 2 – Meet the Surgeon

Today, we met the surgeon our care coordinator has chosen for me: Dr. Madorin. She is petite, nice, understanding, patient, and straight with the facts. She felt The Lump and agreed it might be swollen due to the biopsy, which is probably why it hurts.

She confirmed everything that has been told to us to this point. Based on the information we have, lumpectomy is still the best option. She said that MRIs are very good at detecting lymph node involvement, and none was detected.

I told her I was worried it was growing fast. She agreed it could have grown a little larger in the past month, but she thought it was more because it was inflamed from the biopsy.

We talked about bilateral mastectomy and referral to a plastic surgeon so I can discuss my options and questions with him/her about reconstruction or breast lift with the lumpectomy to make both sides match.

She said chemo would shrink The Lump, and she has even seen them shrink to nothing. But she warned that even if that happens, the surrounding tissue would still need to be removed to ensure clean margins. She said I may even notice a change after my first cycle.

We talked about lymph node involvement.  I was under the impression that if by the time surgery happened in 5 months or so, my lymph nodes did show signs of cancer, I would have to have a mastectomy.   Dr. Madorin said no, she would make a separate incision in my armpit area and take the lymph nodes from there.  Two scars, but I’d rather have that than a mastectomy if I can avoid it.

We talked about surgery and how I felt a mastectomy or bilateral mastectomy without mitigating factors suggesting these steps should be avoided.  Why would someone want to put themselves through that much surgery if it really is not necessary?  She agreed, and she told us that studies show there is no increase in recurrence with a lumpectomy vs. mastectomy.

If genetic testing results come back negative, I am to call her to schedule a follow-up 6 weeks prior to the last chemo treatment so we can start the scheduling process for surgery and reconstruction/lift with the plastic surgeon.

If genetic testing results come back positive, I am to call her to schedule follow-up 8 weeks before the last chemo treatment so we can start that scheduling process for surgery and reconstruction if I decide to go that route.

Still so many variables.  Taking my cleansing breaths and reminding myself, one day at a time.  Slowly, that grey dragon of anxiety and fear settles and fades.  It’s still there, but not as strong.  It doesn’t try to choke me as often, stop my heart, squeeze my innards.

Life is on hold.

Saturday, September 30 – Disneyland Finally

First, because I have not mentioned this before, since the biopsy, The Lump has remained hard and angry.  My boob is tender on the whole bottom side.  The bruising is pretty much healed, but The Lump, oh, that lump, it’s harder, hurts, and feels so much bigger now.  I can’t tell if that is because it’s angry from the biopsy or if it’s growing.  I cannot wear my normal bras anymore.  They hurt too much.  I ordered some compression tanks and doubled them up to help hold both my breasts in place during the day, but it’s not enough pressure to keep the weight off The Lump.

By the end of the day, it’s achy, and movement or the wrong position is painful.  Even sleeping can be irritating.  I’m a side sleeper, laying on my left side, my right boob drops to the left, and that creates tension, and The Lump hurts. I try propping it on a pillow to help hold it up, which adds a new kind of pressure, and The Lump hurts.  I lay on my right side, and again, no matter how I tilt myself to relieve pressure either from the bed or from the droop, The Lump hurts.  I am sure this probably does not help my sleep.

I only take Ambien every few nights, trying to let my natural sleep cycle return normally.  I am still waking up in the middle of the night and up before dawn, but my awake periods in the middle of the night are getting smaller.  When I take Ambien, I sleep through the night and a little longer into the morning hours, but I am still awake before I would normally wake up, before the biopsy.  Today I woke a little after 6 am.  I lay in bed and didn’t give up on trying to sleep more. I stayed there until 9 am and did a semi-doze a few times.

Today was the day I had my hair cut. My husband was a little shocked when I got home. He knew I was going to do this and supported me doing this. I finally felt like I had some control over all of this, which helped release some of that gray and red anxiety fear curled in my gut. He has been reluctant to say that I will look just fine without any hair and, at first diagnosis, said I should probably get a wig—anything to help me feel beautiful.

He started losing his hair in his 20s.  Hair is an issue for him.  He accepts his hair loss, but that doesn’t mean he has to like it.  I love his head.  Bald has never bothered me.  And I’ve seen pictures of him when he had hair. I like him so much better without hair.  But I understand his hair issues and his reluctance to say he thinks I will still be beautiful without hair because he does not like his looks without hair.  I know this is a sore spot for him.

His reaction to my hair when I got home was not the best.  He asked me why I got my hair cut like my mother’s.  He’s never liked my mother’s hair.  He has always wanted me to be healthy and fit, and my mom, well, she’s obese, and that scares him.  Scares him that I will be as well.  To have me come home with hair that reminds him of my mother was hitting a little close to his discomfort zone.

I tried not to let it get to me, knowing everything I knew.  But it cut a bit.  Started all those fears that when all is said and done, my husband will no longer find me attractive.  So, he said what he said, and I asked him what he needed me to do to make this better for him.  Take it shorter? I sure as hell can’t put any of it back, and quite frankly, with what was happening next week and the following three, I don’t want it back.  I want to be able to wash my hair with a washcloth.  Plain and simple.  He backtracked and tried to make it OK.  Realized his reaction was biting.

We left earlier for Disneyland today, and we parked with no issue.  It was still crowded.  Even Cal Adventure, which usually finds fewer people at this time of year, and you can walk with almost no problems.  We stopped to eat at La Brea Bakery.  Talk always turns to The Lump.  My husband actually felt it for the first time today.  He had touched me before, but there was no exploration of The Lump, only light caresses like he was afraid to feel this physically; it might make it more real, and he was afraid he might hurt me.  I couldn’t take being the only one feeling this, physically feeling this and wondering if every time I do, is it bigger.  I asked him to feel The Lump.  Please feel The Lump, that way, he can tell me I am just imagining things.  I could tell he didn’t want to do this, but he did it for me.  I saw his eyes, and this made it more real.  He felt it.  Of course, he was feeling the angry Lump, which was so different from the pre-biopsy lump.  That one was soft and rubbery.  It almost felt like an extension of my rib.  Even though it was big, it didn’t feel so sinister, so menacing, so real.

I try not to dwell on the size.  Dr. Sikaria said the chemo will shrink The Lump.  Chemo starts in ten days.  What if all this growing I am trying not to imagine spreads…  goes to my lymph nodes? I keep pushing that thought to the back.  Nope, I’m not allowed to go there.

As I was saying, of course, talk always turns to The Lump and how this will change me physically.  In the past few years, I have been battling chronic and, at times, extremely painful bursitis in my hips.  I had to stop wearing heels.  It hurt more to try to exercise, and all the stretching I would do throughout the day did little to alleviate the pain.  I gave up after a while, and I gained weight at an astonishing rate.  I finally felt so uncomfortable with myself that I went to my doctor and asked for help.  I’ve been on an eating and exercise plan for almost six months now, with phone calls and office visit checkups.  Our goal was 4 pounds a month, and I have been meeting that goal.  I am still worried about being attractive to my husband, not knowing what my metamorphosis will be throughout this entire process, and having a hard time believing he will find me attractive on the other side.

He keeps telling me to lose weight and be healthy; that is all that matters to him. He will love me no matter what else happens. After his reaction to my hair, I’m not so sure. I keep this to myself. I don’t want to acknowledge that I am afraid to trust him to love me even if, on the other side of all this, I am no longer attractive to him.

I am not willing to confront him on his failures to be healthy.  His now morning Pop Tart addiction.  And how I am not the one buying them, nor the cookies.  He asked me to stop providing the sweets he had been asking for, so I did.  Now he goes and buys them.  It’s OK for him to flip off his diet and ignore his elephant in the room.  It’s always been OK for him not to have an annual physical, to keep tabs on his heart health despite his family history of heart disease.  But I feel there has always been a double standard there.  It’s OK for him to die earlier because that is his family history.  It’s OK for him to ignore his health, but it’s not OK for me.  I’ve tried telling him how this hurts me, how it makes me feel like I don’t matter, but he turns that as if I am being selfish; how could I demand of him a quality of life that he would not want, just to live how much longer?   He is very keen on ignorance is bliss regarding anything to do with his health medically.  He avoids going to the doctor.  It makes me mad sometimes that I feel his expectation of me is to “fight”, make sure I stay healthy, be well, be fit, but he can just do as he pleases.  What I would like doesn’t matter.

The disagreement is not worth it.  I drop the subject.  I know what I want for me, so to hell with him.  But there is always that little spot of hurt, an ache in the corner of my heart, that he doesn’t care enough about himself to do whatever it takes to make sure he is doing the best he can for himself.  A little brown spot of sorrow. The hurt contains a little spot for me within it, blue, red, and green, and he doesn’t respect me enough to hold himself to the same expectations he has of me.  Oh, he will say he doesn’t hold those expectations of me, I am free to do as I please.  But I know that is a lie he tells both of us.  So I live with this little spot of brown sorrow that has a little spot of hurt, anger, and frustration for me in the corner of my heart.  Occasionally one of us will pull it out, we will disagree over it, argue, and then it gets put away to be looked at again some other day.  In the grand scheme of things, it remains a tiny spot.  But it is a tiny spot that can cause an ache in those few instances when we talk about it and never resolve the disagreement to my satisfaction.

We went into Cal Adventure to see the holiday decorations.  Really only in the front of the park, when you first enter, and then Cars Land.  That is fantastic.  We LOVED discovering all the changes and how they lit everything up once it was dark.   We headed over to Disneyland specifically to see the Fireworks show.  It’s changed since the last time we actually stayed to watch, and we have not seen the new display with music and lights.  After waiting for an hour and a half, the fireworks were canceled due to the winds.  We didn’t stay to see the light/music portion of the display.  Next time.  All in all, it was a good night.  Despite my current insecurities and that little sore spot in the corner of my heart, I love spending time with my husband.  Life is still hard, but it’s very slowly getting better.  Life will be better someday.

Life is picking your battles

Friday September 29 – Chemo School

Today was Chemo School. I had picked up the prescriptions that Dr. Sikaria’s office told me would be called in and that I would need to pick them up prior to “school.” We headed over with my new chemo meds and went to learn.

When we first arrived, they advised us that the approval for the genetic test had come through and that they could draw the blood for that.  I had some forms to sign, and they had to go over some of the information about the test.

I signed the forms while the nurse got everything ready to draw my blood.

I told her there was a skin tag on the right arm at my elbow.  That marks the spot where the blood comes out.  She tied the tourniquet, gave me the rubber ball to squeeze, and started feeling around.  I told her, “I promise,” use a butterfly needle and go straight up under the skin tag.  Blood will come out.  She felt some more, and I told her you will not feel it.  Trust me, and go for it.  She did, and her little squeal of delight when she got blood told me she didn’t believe me.  I teased her – you didn’t believe me!  She said she was really worried because she couldn’t feel it and was afraid she would have to stick me a second time.

After that, we were taken back to an exam room to meet with the Nurse Practitioner and learn about chemo.

She went over our insurance and co-pays first. There is no copay for chemo, but there will be co-pays for doctor visits and when we meet with the Nurse Practitioner.

When I come in for my first chemo appointment on 10/10, that is day 1 of cycle 1.  It will take about three hours to complete the infusion.  They will start with anti-nausea drugs, then the chemo drugs.  When I am done, they will apply a Neulasta disc.  It’s battery-operated and will administer the Neulasta automatically at the proper time.  It will have a light on it when it turns red or off or something like that; after 27 hours, I can remove the disc.  It will make a noise when it’s ready to administer the drug.

One of my chemo drugs will turn my urine pink to reddish color.  The other one will irritate my bladder, so I have to drink a minimum of 2-3 quarts of fluid every day and make sure I drink enough to make me urinate twice every night so my bladder doesn’t go too long without emptying the first 2 to 3 days of the cycle.

She did ask me about motion sickness, and when we told her I am prone to motion sickness in the car (generally not in planes, trains, or boats, though), she changed the anti-nausea drugs that would be administered. She had already had Compezine called into our pharmacy, but she told me not to pick that one up. She will have a different drug called in for me to pick up and take on days 1-4 at bedtime.

I am to take Decadron days 2 through 4, day and night, and Zofran every 8 hours as needed, days 2 through 4.

I am also to take Claritin on day 2 to help prevent the bone pain that can be caused by the Neulasta.

My hair will fall out around 2 to 3 weeks after day 1 of the first cycle.

We already have an Rx for Cipro in case I spike a fever. If my temperature is over 100.4, I am to take the Cipro, and we are to call in and report the fever.

If I develop mouth sores, we are to call in.

If the nausea is not controlled, we are to call in.

If we have any questions, we call in.

This is only for phase one of chemo.  We have to do this again for phase two…

I have a standing order for a CBC (Complete Blood Count) two business days before the start of the next cycle.

Life is expanding our medical education

Thursday September 28 – Last appointments scheduled

Dr. Sikaria had said I needed an echo-cardiogram as well as a port placed before chemo started, and we needed to be scheduled for chemo school.  Of course, both of these items need pre-approval from the insurance company.  Pre-approvals went very fast; today, we finalized these last two appointments.  I also had read I should get a dental check-up and cleaning before starting chemo, and if I needed my annual well check, I need to get that done before chemo as well, as that will be thrown off by the chemo.

Echo and my annual exam are scheduled for next Tuesday, The emergency dental appointment was completed yesterday (I received a clean bill of health along with some high-fluoride toothpaste to use during chemo to help prevent erosion), and the port placement is planned for Thursday, October 5th.  They are squeezing me in as Friday was already fully planned, and we would be out of town on Saturday.

When I heard about the washing restrictions for the port, starting with the first three days—no showering—followed by a week when you can get it wet, but not directly, and it needs to be kept as dry as possible. After two more weeks of no direct water on the incision site and me with my normally worn curly hair, I was wondering how in the heck I was going to manage this. That was when I decided I needed to cut it off now.

I have always been whimsical about my hair.  This would be why it now sported blue, green, hot pink, and purple colors in the underlayers.  I have always admired those women who shaved their heads, and I figured once my hair was mostly silver/white, I would join a Saint Baldrick’s Head Shave fundraiser and shave it all off to start over and embrace the white.  My husband was never very keen on that idea, but I always kept this in my mind.

So I called my stylist, and they agreed to cut my hair – very short, on Saturday.  Below are before pictures….

Life is “hacking” of my hair

Tuesday 9/26 Text Message exchange with a cousin

Hi!  I heard about your news.  I’m so sorry.  I’m curious, since I help diagnose breast CA, what exactly was the diagnosis and stage?  All my best and keeping up the positive vibes for you!  (two kissy faces)

Thanks!  Here is all the dirty details sent to my family a week ago:

As I am sure all of you have discussed, I found a lump in my right breast right before Labor Day weekend.  I already had a follow up doctor appointment scheduled for the Tuesday after, so didn’t rush to make another appointment.

I’ve had clean mammograms for years with the last one being this past January.

Tuesday, September 5th, I told my primary care doctor about said lump.  She felt it out, we both agreed it was most likely a cyst, and she scheduled me for a diagnostic mammogram and ultrasound on Tuesday Sept 12th.

That lead to being scheduled immediately for a biopsy, that happened on Thursday September 14th.

Today was results day.

The lump is 29 x 22x 17 mm, and located on the anterior side of my breast 8 cm from the nipple.

It is an invasive ductal carcinoma, grade III

It is hormonal receptive negative and the Ki-7 indicator is 80%, which means it is a very aggressive tumor, and there is not the additional plus of being able to cut off hormone supply to help stop the cancer.

It is early stage, 1 or 2.

The mammogram and ultrasound did not detect any additional sites or enlarged lymph glands.

I have already been scheduled for an MRI today to insure no other lesions or lymph gland involvement before my first appointment with an Oncologist.

They are also trying to get me scheduled for genetic testing this week, but think it may not happen until next week when I meet with the Oncologist I have been referred too in my network.

The consulting oncologist we met with this morning advised if I was her patient, she would recommend chemo first, as this type of cancer responds well to chemo, shrink the tumor then have a lumpectomy.

If my genetic testing comes back positive for any one of 7 variants for breast cancer, that would change from her original recommendation to double mastectomy to prevent further occurrences.

I will be losing my hair, I may need radiation treatment, but that is still to be determined by the next scans and the genetic testing results.

I have a great medical team that is at my beck and call should I need them, even if it is only to help me with the doctors that are covered in my medical group or answer our questions.

I have been referred to support groups here as well.

The consulting oncologist and my cancer coordinator both emphasized this is very treatable, curable and temporary.

I am in good hands, and this is being fast tracked as much as possible so they can get a treatment plan in place sooner rather than later.

This is all the information I have right now.  I am not ready to talk about this, and still have to go back to the imaging center for the MRI.  As soon as I know more I will update you all.

Please do not call me today or tomorrow.  I have much reading to do, and I have a full day symposium already scheduled for tomorrow that I really need to attend for work.

This weekend I will make time for phone calls.  I love you all, I thank you all for your understanding and support.

Thanks for the information!  (Kissy face) 

I work in our breast center and perform the ultrasounds to help detect these types of cancers in their early stages (God willing) and assist the doctors to mark the area prior to chemo treatment and sometimes even post chemo.

Historically we’ve seen such a positive response to the more aggressive chemo – the neo adjuvant.  It’s amazing and I’m sure your oncology team have a wonderful plan set up for you.  You answered all the potential questions I was going to ask!

I’m praying the genetic testing is negative.  Do what feels appropriate in regards to double mastectomy.  i know it’s a tough decision yet it can be an easy one depending.

All my love and feel free to text anytime!

Met with the Oncologist yesterday:

Today was the first oncologist appointment (getting to know you, getting to know all about you….)

My Care coordinator picked a good match.  We both like her.

Her assessment of the treatment plan matched the consulting Oncologist recommendations and reasons why

Ready, set, here we go…. (First star to the right and strait on till morning!)

My Oncologists name is Swati Sikaria.  She is a Hematology & Medical Oncology Specialist.  She is taking a very hands on approach to my treatment, and not only will I be going to the same office for all my treatments, but she has me coming back in for a physical check up every few weeks in between…  (that is a whole lot of driving to Redondo Beach).

She is placing me in early Stage IIA for my cancer, only reason for Stage II – size.

She is starting me on chemo first, then we move to lumpectomy (or bye bye babies if genetic test results come back with bad news).  We will go from there for next steps.

Chemo cocktails (Dr. Sikaria already confirmed, these are not the fun 5 0’clock cocktails) will be done in two parts.

Part 1:

Adriamycin &  Cyclophosphamide every 2 weeks for 4 rounds (total of 8 weeks)

She said this will most likely kick my ass for about 4 to 5 days, then I will start to feel better.  There is the possibility to work part time during this cycle, but in speaking with Kim who handles all the disability stuff, variable leave was sounding complicated.  My company is willing to work with me on this.  Tomorrow we will sit down and put together a tentative plan and go from there once this actually starts and we see how I react.

Part 2:

Taxol & Carboplatin (which is a new drug in the chemo arsenal and she is willing to fight the HMO if they don’t approve it.  Really tough on triple negative cancers like mine.)  This will be administered weekly for 12 weeks.  Adding the Carboplatin will kick my butt day 1, and maybe day 2, but I will recover quickly and I can work from home, but cannot go into office when I do this.

This all starts Tuesday 10/10 at 9am sharp.

But wait, there’s more… (and you don’t even have to cover shipping and handling charges)

We get to have Chemo Training….  (they teach me the best way to puke and Robert the best way to hold the bucket?)  That is this Friday at 1pm.

I am being scheduled for a port – yeah, another battle scar! (and less needle holes!)

I am being scheduled for the Genetic Testing (as hinted at above) – has to be approved by the Insurance company, if that fails we will be doing this anyway and paying for it out of our own pocket.  It’s important.  It will be a full genetic mark up, not just the breast cancer genes.

I will be given a self-injectable of Nulasta to take after every chemo session to keep me healthy during all these designer drugs I’ll be doing meant to kill me, oh, wait, I mean the cancer.

And the bad news – genetic testing results take about 3 weeks…  If I come back positive for any cancer indicators all three kids will then need to be tested as well.

That is all the new news for today.  You can all go back to your regularly scheduled programming.

I can add you to my emails I’ve been sending out.  Christmas Eve theme is PINK! 🙂

Thank you!

No problem.  Writing this all out for he family actually helps me understand, helps me remember all the stuff they keep throwing at me, and gives me something to do.  One of my nephews reached out to me this morning wanting to be added to the emails too.

Over the years I’ve heard consistently, the more successful healing for patients with a large support group.  I’m not surprised you have many people behind you!

I don’t Facebook, so the emails are greatly appreciated!

I’m glad your doing the genetic testing as this now changes history for your daughter.  she can start her mammo screenings at 40 as opposed to 50.

Good. I started at 35 because of the thyroid cancer.

you never have a family history before correct?

I see more and more patients who are diagnosed with No family Hx.  And Getting younger and younger at diagnosis.  Youngest I’ve been involved with was 21!  

And by the way your writing is hilarious with injections of song references (laughing crying face)

Nope.  Although my aunt (dad’s sister) when he was talking to her last Friday, told him my diagnosis sounded like exactly what she went through  almost 10 years ago.  She did chemo, lumpectomy that turned into mastectomy because her lymph nodes tested positive during surgery and then radiation.  She’s been fine since.

Gotta keep the humor man!

They’ll likely do a sentinal node testing prior to surgery for node involvement. 

Yes, in my briefcase full of information we received at diagnosis, I was advised they would do the SN mapping.

Now I just have to decide if that happens or the genetic test comes back hinky, do I want new boobs or not.  One of my originals is trying to kill me… (dead face)

I’d go with double mast.  likely of contralateral side getting CA is high.  Again, only based on the results of the testing.

Of course

Left side is more commonly diagnosed initially.  We’ve seen cases after double mastectomy, where CA was found in one breast via imaging or palpable, and path found CA in the other breast as well!  Crazy

OK now you’re just scaring me.  (Scared face)  Having a hard enough time trying to figure out my relationship with my boobs and The Lump and whether I want reconstruction if it comes to bilateral mastectomy.  Don’t tell me about the bought boobs going rogue too!

Of course I have to be different than the norm…. phhhbtt.  Left Boob.  why would the slightly bigger boob go rogue so a lumpectomy wouldn’t be such a drastic change between the two.  That would make too much sense (eye rolling face)

OMG  I AM So SORRY!!  The bought boobs won’t go rogue!  I haven’t heard that happen! Nooooo!

Oh, ok.  Totally misunderstood that then.

This is PRIOR to reconstruction.  My BAD   I shouldn’tve said       aww man (sad face, zip lip face – 4 times)

It’s ok, I make this kind of mistake all the time.

no its just the volume we see.  Either way  I’m so sorry to cause more distress but I’m hearing you and your boobs be it bought or original packing, will be well looked after

Thank you.  No worries, it was only a mild flop of the tummy. (sick face) really!  (Now I get to tease you unmercifully! (Joking face)

Yes      Yes you do !!!   Even as I bring you Middleton (Angle Face and kissy face)

….

you’re more than blessed

Yup!  I have angels watching over me.  they keep leaving their feathers behind.  Found this one on the backseat of my car today.

Life is finding the humour in a deadly situation

Tuesday September 26 – Support Group

We went to our support group meetings. My husband went to his room at the Cancer Wellness Community, and I went to mine. There were about 14 of us total in my group. There was one other “new” person besides me. The group leader had the “veterans” introduce themselves and briefly describe their diagnosis and treatments. Then it was our turn, the two new ones to the group.

There were women there in various stages of hair regrowth or loss, and one gal who had not been to the group in 6 months and they were surprised to see her back. Once you join a group, they ask you to continue going until 18 months after your last treatment, whatever it may be.

As the women took turns introducing themselves, it became evident that their original diagnosis and treatment plans all changed to add additional therapy to their original plan. Those who planned lumpectomy ended up with full mastectomy or even double mastectomy, and so on. One woman now battles lymphedema. This happens randomly when the lymph system stops cycling lymph in that area due to trauma from surgery. This builds up in the surrounding tissue, causing swelling. There is no cure, but some things can be done to help deal with the swelling and discomfort.

I was asked about my thyroid cancer and told them about my experience with that briefly. And around the circle, the discussion kept going, bone pain from Neulasta, nerve pain from the chemo setting in after the second to last round. Being tired, ready for it to finally end. The astonishment at how long I have been scheduled to receive chemo – 5 months. Most of them, it’s been two, maybe 3 months of chemo. Even the beautiful woman to my right said she was diagnosed with the same thing as me. She only had 6 cycles of chemo, three of the drugs that I will be having. She had to have a mastectomy. I don’t know who is more worried now, her or me.

Every one of them has opted for reconstruction.

One was talking about how happy she is to get her eyelashes back; they are finally starting to grow. At this point, about half an inch of hair had regrown on her head.

As I sat there with all my curly red hair, and my fun, blue, green, pink, and purple peeking out from underneath, I realized I love my boobs, and I didn’t want anyone taking them from me. If they do have to go so I can live, I think I may want reconstruction. And all of these women have terrified me. What is going to happen to me? Can I do this? I have always thought of myself as strong, and I can take this on, but oh my God, I can’t do this. I can’t cut off my breasts; I can’t lose my eyelashes! I’m going to lose my fucking eyelashes, my beautiful, thick, long dark lashes that frame my blue eyes and help hide my hooded eyes so they don’t look small. Take my hair, take my eyebrows, and take all my body hair, but I can’t lose my eyelashes….

I don’t think they notice how withdrawn I’ve become during all their talking.
On it goes; they talk about recurrence after being done for 6 months, waking up from surgery, finding the worst-case scenario has happened, scars that have to be repaired, additional surgeries, mouth sores, bone pain, and losing your eyelashes. I can’t do this. Just sit here, be calm, and don’t show them how your insides have turned to jelly. All these women have survived; you can do this. Oh my god, I can’t do this.

The group is done. I smile and thank those who come to say goodbye; I grab my bag and sweater and head to the front to meet my husband. My husband is still in his meeting room. I can hear them talking; he is talking. He is talking to one, maybe two other people, I think. He’s connecting; they are sharing. I, on the other hand, am a quivering mass of overwhelming anxiety, fear, and doubt, and I am going to lose my damn eyelashes.

He finally comes out. He is still talking with one of the guys from his group. He is bonding; I am falling apart. We’re being asked to exit the building so they can lock up. My husband gets a phone number; he’s making connections. This man who thought he would not fit in would not belong is belonging.

Goodbyes are exchanged, and we head to our car. He’s holding my hand, he’s telling me about his group. I just keep nodding, uh-huh, yeah. Then he asks me how I am. My lungs don’t work, all that gray and red fear and anxiety is no longer a tight little ball in the corner of my gut, it’s free, flying throughout my body, my knees want to buckle, my ears buzz, my heart feels as if it has stopped. All this starts to leak out of my eyes. I squeeze them shut, and all I can do is shake my head. No, no, I am not alright. He asks me what is wrong, all I can say is “It’s just too much, it’s too much, I can’t do this yet, it’s too much….” and I crumble and fall to pieces. He’s holding me and saying he’s so sorry. He didn’t mean to break me. He made me do this, and I am broken.

I am so lost. I don’t know how to pull this together right now. I don’t know how to stop the falling apart. It was the damn eyelashes… He’s holding me and telling me we can do this. It doesn’t matter what I physically lose in this process, we will survive this, and be stronger on the other side. He’s getting me to talk, what was it that was so overwhelming? It was all of it. I realize I am in mourning. I am mourning the loss of my life as I have known it to this point. I am mourning the loss of my security, knowing I had beat cancer, I would live a long life watching my family grow, watching our grandson grow, learn, fall in love, be heartbroken fall in love again, have a family. Grow old with my husband. Now all that could be gone. Uncertainty, tests, and anxiety for years until I know this is beat yet again. Mourning the loss of my breasts, which I realized in a moment in that room that I love. I love that I have nursed three children from them and that my husband knows how to touch them just right. I love their weight and shape. How they look in my clothes. I am morning, and they will forever be changed from this. If I only have a lumpectomy, it will change one, and the other will be changed to match.

I am mourning the loss of my innocence in dealing with cancer at this magnitude. I am mourning that I have to know all these things about chemo, and nutrition and lymph nodes, losing my hair, and regrowing eyelashes, dry mouth, nausea, bone pain, exhaustion, battling mouth sores, and radiation burns and surgery, scar tissue, infections, and lymphedema…

Life is broken, life is sad, life has kicked me when I was down.

Monday September 25 – Oncologist

Today was the first oncologist appointment (getting to know you, getting to know all about you….)

  1. My Care coordinator picked a good match.  We both like her.
  2. Her assessment of the treatment plan matched the consulting Oncologist’s recommendations and reasons why
  3. Ready, set, here we go…. (First star to the right and straight on till morning!)

My Oncologist’s name is Swati Sikaria. She is a Hematology and Medical Oncology Specialist. She is taking a very hands-on approach to my treatment. Not only will I be going to the same office for all my treatments, but she has me coming back in for a physical checkup every few weeks in between… (That is a whole lot of driving to the other side of the hill.)

She is placing me in early Stage IIA for my cancer, the main reason for Stage II – size.

She is starting me on chemo first; then we move to lumpectomy (or bye-bye babies if genetic test results come back with bad news).  We will go from there for the next steps.

Chemo cocktails (Dr. Sikaria already confirmed; these are not the fun 5 o’clock cocktails) will be done in two parts.

Part 1:

Adriamycin &  Cyclophosphamide every 2 weeks for 4 cycles (total of 8 weeks)

She said this will most likely kick my ass for about 4 to 5 days, then I will start to feel better.  There is the possibility of working part-time during this cycle, but in speaking with the patient advocate who handles all the disability stuff, variable leave sounded complicated.  My company is willing to work with me on this.  Tomorrow, we will sit down and put together a tentative plan and go from there once this actually starts, and we see how I react.

Part 2:

Taxol & Carboplatin (which is a new drug in the chemo arsenal, and she is willing to fight the HMO if they don’t approve it.  It is tough on triple negative cancers like mine.)  This will be administered weekly for 12 weeks.  Adding the Carboplatin will kick my butt on day 1 and maybe day 2, but I will recover quickly, and I can work from home, but I cannot go into the office when I do this.

This all starts Tuesday, 10/10, at 9am sharp.

But wait, there’s more… (and you don’t even have to cover shipping and handling charges)

  • We get to have Chemo Training….  (they teach me the best way to puke and Robert the best way to hold the bucket?)  That is this Friday at 1 pm.
  • I am being scheduled for a port—yeah, another battle scar! (And fewer needle holes!)
  • I am being scheduled for Genetic Testing (as hinted above) – it has to be approved by the Insurance company; if that fails, we will be doing this anyway and paying for it out of our own pocket.  It’s important.  It will be a full genetic markup, not just the breast cancer genes.
  • I will be given a self-injectable of Nulasta to take after every chemo session to keep me healthy during all these designer drugs I’ll be doing meant to kill me, oh, wait, I mean the cancer.
  • And the bad news – genetic testing results take about three weeks…  If I come back positive for any cancer indicators, all three kids will then need to be tested as well.

That is all the new news for today.  You can all go back to your regularly scheduled programming.

Life is preparing for battle

Saturday, September 23 – Sleep and Disney

As it is now in my life, sleep is just a brief passing during the night. I fall asleep but then awake between 1:30 and 2:00 a.m., fall asleep sometime after four a.m., and wake again before dawn. Rather than toss and turn and possibly ruin my husband’s sleep, I get up and gather myself to face my family, albeit over the phone.

Since Mom lives the furthest and is three hours ahead, and it is just after 6 a.m., I call her first. I thought for sure she would answer, so I left her a voice mail. Now what? Then, my phone buzzes; she is returning my call.

We discuss The Lump, how I am coping, my doctors, and all that.  My husband, how is he?  The kids, does the oldest know?  She has to ask this as our oldest is not speaking with us.  He has deemed us the root of all evil in his life or something to that effect.  He is lost and hurt and lashing out.  Something he should have done in his 20’s but waited until his 30’s to start.  My mother thinks this is something we should fix, or at least she used to tell me we had to fix this; we’re the adults.  I think she now realizes, we cannot fix this, this is something our adult son needs to come to terms with in his own life.  No parent is perfect.  We all make mistakes.  Some are bigger than others, and kids don’t come with an owner’s manual.

We all go into parenthood determined not to be like our parents or not to make the mistakes our parents made.  However, I quickly learned that we make our own.  Nothing prepares you for all the things your children will do, the mistakes they will make, and how you will react.  Nothing prepares you for the fear that comes up when your child walks to school on their own for the first time or goes off on their bicycle beyond your vision, and so many other instances where your brain can just imagine all the bad things that can happen.  It’s hard to let them go, to let them make mistakes, be hurt, learn, grow.  Moreover, each one is different.  Each one finds new ways to illicit that fear response, to push your buttons, and to bring on the anger and frustration.

As our children grew up, we told them we were not perfect. We apologized for the times we reacted instead of acted, for the times we were wrong. We told them that as parents, it was our job to find new ways to emotionally traumatize them from how our parents emotionally traumatized us. It would be their jobs as adults to get off the cross, build a bridge, and get over it.

The oldest has been hurt by so many little traumas in his life.  Some were caused by me specifically, some by us, his stepfather and I; we were just trying to do our best with what we had.  In addition, his biological father has contributed to those hurts too.  His siblings do not understand how he can lash out at us in this way to turn his back on his family and walk away.  I understand he’s taking out his hurts on those he knows in the deepest recesses of his heart, who will still love him when he learns how to deal with his traumas and starts to heal.

So, yes, I have told the oldest what has been happening.  I do have a way to communicate with him if necessary.  I cannot make him respond, though.  His responses to date have been almost nothing.  Just an acknowledgment that he has seen my communication.  My mother is angry with him for this.  She wants to call him and give him a “talking to. ”  I ask her not to do that.  She is his grandmother.  Her job is just to love him unconditionally, no matter what difficulties there are between us.  She asks me if I am mad at him for such callous behavior.  I tell her, no; I am not mad at him.  I hurt for him.  This is not something I can fix for him, and I know as much as he says his life is good and he is happy with those he has chosen to surround himself with, I know he is masking the pains that he doesn’t want to face.  Until he does, this cannot be fixed.  And he will continue to hurt and continue to be alone among all his friends and lovers.

We move on, talk about other realities, and after a while, we say our goodbyes.

I text my cousin, she is more than my cousin, she is my sister.  Having grown up in a house with four brothers, having my cousin as my “sister” was nice.   I know she and her husband are spending a weekend away, and they are busy doing their fun things without their kids.  I tell her to call me when she has the chance, I am ready to talk.

My husband is now up, so I should finish getting ready for my day. I need to run some errands, shop, and go to the bank, and take a nap. Our plan is to go to Disneyland to see the Halloween decorations and possibly watch the fireworks.

Before I leave, I call my dad.  They are at the club, getting their exercise, and they will call me back later.

While running the errands, my parents call.  We discuss what has been diagnosed and then my dad tells me his sister, my aunt, when he was telling her, that she said it sounds just like what she had almost 10 years ago.  She just told him about it!  Wow, I am totally blown away.  I cannot imagine not telling my siblings about a cancer diagnosis, going through with chemo, surgery, and everything, and not even telling them.  Well, now I need to go back and update all my medical histories.  Good to know.

I finished shopping, got home, put it all away, and laid down for a nap before we headed to the park.  My husband decided I needed sleep, so he didn’t wake me when the time approached for our intended departure.  I slept until almost 5 pm.  We went anyway.  As we approached the parking structure on Disneyland Drive, it was blocked by cones and a police car.  Traffic was horrid; everyone was being redirected to downtown Disney parking.  We looked at each other and decided we didn’t want to deal with that traffic, nor the crowds, if it was that crowded in the parks.  My husband asked me if I wanted to do something else, of course!  We’re in the area; let’s go eat dinner at our favorite restaurant.

Away we went. About 20 minutes later, we arrived only to find my boss and his family already seated and having dinner, too. Then we ended up being seated next to them. Good taste! We discussed The Lump and the numerous possibilities that loom ahead of us. He reminded me that I still need to write a bucket list.

We go home afterward, and I feed the stray cat that adopted us years ago.  He doesn’t really come into the house, but the backyard is all his.  I call him the Toothless Wonder Cat.  He’s lost all his teeth but still catches the occasional rodent and leaves it as a present for us.

We have a recliner in the back, and that is where the cat prefers to eat, on the recliner and then in our laps.  I fell asleep out there.  Thankfully, my husband woke us up so I could go to bed.  Maybe I will sleep the whole night again.

Life is craving sleep

Friday, September 22 – Cancer Support Community

We go to the Cancer Support Community, as Evelyn directed, as Robert insisted.  He has to go with me.  I cannot do this alone.  We meet with several interns there who provide us with a brief tour before we are taken to a room to learn about the center, how they are funded, what services they provide, and for them to learn about us.  I feel small.  I feel insignificant.  I feel lost.  I can do this.  I feel lost…

There are three of us with cancer: a gentleman with bladder cancer and only one kidney, and his wife, who I can tell is desperate to have something to cling to.  A young woman who almost died of Leukemia is waiting for a bone marrow match.  And me, the one with the aggressive, triple-negative breast cancer.

There is another person in our “Welcome” group; her brother is dying, and she is distraught.  Her parents died when she was 7; I gather her brother raised her.  And my husband.  My black and white, sarcastic, dry-witted, loving husband.  The man who thought at a way too early age that he would not live past 50 had a bucket list by age 10 and started working on it by 20.  This deep-hearted, compassionate man who hates drama hates dramatic, over-emotional upheavals.  Who thinks he cannot benefit from being in a group all sitting around feeling sorry for themselves rather than taking some sort of positive action?  I sit next to this man and realize he needs this as much as I do.  We must get through this together and with as much help as possible.

As we’re all being handed the paperwork necessary to fill out to continue with placement in a support group, I tell him if I have to join a support group, he does as well.  There are three support groups offered, three nights a week. One for spouses/companions, one for newly diagnosed breast cancer patients, and one for other cancer patients.  We pick Tuesday nights.  We will start next Tuesday.  We are shown more of the facility.  I am trying to remain calm, to keep the fear-laced anxiety contained.  It bubbles up and threatens to consume me.  With all my willpower, I push it back yet again.  I can do this.  I have so many in my life I can call on for support.  Oh my God, how is this happening to me….

I have to talk to my family about this.  They have been so patient about this.  I still have not processed this, this lump, this process; why am I struggling so much?  I am still so lost, small, and frightened, and The Lump is so big.  How did I miss it for so long?  What is WRONG with me?  I can do this.  I can beat this; who cares if I have no boobs?  Who cares if I have fake ones?  Will I care?  I have fucking CANCER!  Breathe…  I feel like I’m constantly on the verge of tears.

We finish up at the Cancer Support Community, and because it’s National Ice Cream Cone Day, stop for an Ice Cream Cone.  I go back to work.  I should be exhausted.  Sleep is still not coming to me.   Will I still be able to be attractive when this is over?

My husband purchased Pink Die-Cut tape-backed letters and stuck them on the bathroom mirror: Treatable, Curable, Survivable, Temporary. I love him.

Life is big and scary.