Author: KimJHA

My cousin recently commented that it’s taking longer and longer to scroll through the years when you have to submit your age on something.  You know those online forms you fill out and they have a drop down to pick the year, yeah, those ones where it used to be a quick flick on the mouse and I was to my birth year.  Now it’s several rolls down to get to that year in the 60’s.  It seems like just yesterday that I was still being carded at 30-something, and no one believed my kids were mine.  Now I am old enough to join AARP.

Hubby always tries to joke that I am older than him.  It started years ago when I was still going through thyroid cancer testing.  I had annual testing for the first 7 years, than every other year through year 13.  My endocrinologist said I was cured at that point and didn’t need to be tested anymore.  I think I finally blew a sigh of relief and actually believed I would not have a recurrence of thyroid cancer at that point.

I dreaded the annual testing.  First there is the anxiety that something was going to show up on the scan.  That unfurling of the dragon in my gut, squeezing my lungs and heart, reminding me that cancer is bad.  The first year my scan was set up the week prior to Memorial Day.  It was a week long process.  The first two days I had to go to the doctor’s office to get a Thyrogen injection.  This tricked my body into thinking I had hypothyroidism (not enough thyroid hormone).  This is better and easier than those whose insurance would not cover the Thyrogen injections at $1200 each… (And this was 19 years ago; I can only imagine what the costs are now since all these drugs just keep going up).  Those who don’t get the Thyrogen injections have to stop taking their Synthroid, (replacement thyroid hormone) for about a month and put themselves into hypothyroidism so they can proceed with testing.  Anyway, Monday and Tuesday I had to get the injections in the morning at the doctor’s office.  Wednesday I had to go to the hospital to be given the uptake radioactive tracer, Friday I had to go to the doctor’s office in the morning to get a blood draw and I would be scheduled at the hospital for the scans, usually in the morning sometime.

The first few years the scans were scheduled through Little Company of Mary hospital in Torrance.  The first year, I did the shots Monday and Tuesday, went to LCM Hospital Wednesday morning and drank the radioactive isotope and went back to work.  They told me to stay away from pregnant women, other than that I was not more radioactive than an old computer monitor.  I started feeling nauseous within an hour, and then starting bringing back up the water I was drinking, so now we knew that I was sensitive to this little dose of radiation and I went home.  I quickly figured out if I took little sips of water rather than a normal drink of a few mouthfuls I could keep it down.  This was good as the best way to flush radiation from your system is to drink a lot of water and pee it out.

Friday finally came, and I knew I needed to get my car smogged, so planned to head to the hospital a little earlier than my appointment as there was a smog check place on the way.  I went to the doctor first thing for the blood draw and went back home to wait until it was time to leave for the smog and then scans at the hospital.  I want to say my appointment at the hospital was around noon.  I arrived about 15 minutes before my appointment time and checked in with the nuclear medicine department.  A nurse came out shortly after I arrived and kind of yelled at me that they had been trying to get a hold of me all morning, and I should have been by the phone to get the message that they had an emergency and needed to push back my appointment to 3pm.  I had a cell phone, they could have called that, I even asked the nurse if they had that number.  I could clearly see on the paperwork she had, they did.  She said they left me several messages.  Ok, no problem, I’ll come back at 3.  I got home, there were no messages.  I went back at three and waited until almost 6 before they brought me in for the scans.  There are four different scans they do and to do them all takes a total of about 2 hours.  I was there for almost three hours while they completed the scans, three of the scans require you to hyper-extend your neck (head back really far), and this gets uncomfortable.  The tech had left the room and I was stuck there under the machine for almost an hour on the third scan, which is the longest one with your neck hyper-extended.  The scan was complete, but the tech was not there to release me from the machine.  I finally left there at almost 9pm.  I was so glad that we hadn’t planned a vacation for that weekend with the kids.

The following year, I scheduled myself to be out Wednesday, Thursday and Friday.  I again followed the same routine, and was scheduled for my scans again on the Friday of that week near noon time.  When I arrived and signed in they told me there had been a scheduling error.  I was scheduled into nuclear medicine at the same time they had a pregnant woman coming in for different testing and I could not be in the same waiting room as her.  They asked me to wait down the hall in cardiology and they would come get me when it was time for my scans.  No problem.  I went down the hall to the cardiology waiting room and sat down.  I had a book, so started to read.  The receptionist there opened her window and asked me if she should help me.  I explained the mix up in nuclear medicine and she understood and said oh, yeah, they told me they would be sending you down here.  No problem.  An hour later she notices I am still there, waiting and reading.  She asks me if I need anything.  Nope, I’m good.  She said they should be coming to get me any second.  Because I know this will be at least two hours I am trying not to drink too much, I don’t want to have to pee in the middle of all this when I can’t move.  Another hour goes by, and cardiology is leaving, they are done for the day there, but have other places they need to be in the hospital.  No problem, I’ll sit here until they are ready for me.  Another hour; and a fourth.  A cardiology nurse comes in and sees me still sitting there and goes back out.  I think she went down to nuclear medicine as not more than 5 minutes later a nurse from nuclear medicine comes down and admonishes me for allowing them to leave me there for 4 hours.  WTF?!  How is this my fault?  I realize they forgot me, and now they are trying to blame me for their error.  I get my scans and I manage to be home before the dinner hour is over.

The third year, back at the same hospital, the same anxiety of what will be found on the scans, and I am scheduled for 10am scans.  I arrive, trying to keep my anxiety in check, trying to keep my frustration of the last two years in check as I write my name down on the list of patients arriving for their appointments, when the reception nurse looks at my name and asks me for my records.  What?  What records?  She tells me she needs the copies of my records from my previous scans.  First I am hearing of this, and I tell her my previous scans were all done at this hospital.  I don’t understand, I’ve never had to bring records before and no one advised me that this was needed.  I would get those copies here…  She looks at me like I’m the idiot and says, we called your doctor’s office this morning and told them we needed a copy of what we sent them in previous years as the file cabinet that holds your records is broken and we can’t access them.  They should have called you and had you pick them up to bring in with you.  I explain to her that my doctor’s office is closed on Fridays except for the nurse who comes in to take my blood sample and then she leaves once it is processed for the doctor.  There is no one there to get that message….  Again, how is this my fault that your filing cabinet is broken and my records are locked up?  She then yelled at me to go sit and wait and she would see if they could do my scans that day or not.  Ummm, I’ve taken a radioactive isotope for this scan; I can’t do this again next week…

The fourth year I told my doctor I didn’t want to go back to LCM for the scans.  She sent me there anyway.  I don’t remember what happened that year, but it was similar to the first three year, something went wrong and they tried to blame me for their issues.  Year 5 I again asked if I could go somewhere else, but my endocrinologist still didn’t listen and sent me yet again to LCM.  That year, because Hubby knew how hard this was on me and how angry and frustrated I’d be by the time I got home on Fridays after my scan, with that anxiety dragon taking up all the space where my lungs should be, and wrapping its tail around my heart, constricting it, until it felt like it would pound out of my chest, and all this before I even have a nurse try to blame me for an issue they had in nuclear medicine, he decided he would go with me.  Hold my hand, crack jokes, and make me laugh while I went through the annual scan.

On year 5 my scan was scheduled for 9AM.  We arrived early, and I noticed the whole bottom floor and been remodeled.  There was an open airy waiting room shared by nuclear medicine and cardiology.  It was big, with a central station to check in, and another station off to the side to review your biometrics and intake information.  We signed in, and then we were called over to the other station to get my stats, etc.  The registration aid was reviewing my insurance, phone, address and when she came to my age she started to read out my birth date.  She transposed the numbers in the year I was born, and Hubby was the first to catch it before she could even stop herself to read it correctly.  He smacked his hand on the desk and said “Ah HA!  I knew you were lying to me about your age!”  The poor lady going over my registration was all over herself trying to apologize, and explain she had transposed the numbers, really, I was not that old, really my birth year was in the 60’s!  I was laughing; I knew what he was trying to do.   Two hours later we were still waiting for me to be called back for my scans.  You could hear a woman crying behind a door I needed to go through.  A nurse called my name and said we were early and they were trying to wedge me in to get us out early.  Ummm really?  My appointment was at 9am, it was after 10am when she did that.  Hubby just nodded and smiled then turned to me and said they have a different clock than we do.

This is why Hubby now tells everyone I am older than him, by a lot!  It makes us both laugh.   Even though he is older than me, by months.  The next year I explained to my endocrinologist yet again that I didn’t want to go to LCM for the scans.  This time she asked me why, I explained what had happened over the past 5 years and she agreed to that I shouldn’t have to deal with that again while going through cancer testing.  The rest of my thyroid cancer scans were done at Torrance Memorial, no muss, no fuss.  I was taken in at my scheduled times and was done within the two hour time frame.  That 6th year was also the year my endocrinologist broke her ankle skiing and had become a patient.  Her whole attitude and “bedside manner” changed.

I told Hubby I signed us up for AARP.  If I am old enough to join, he definitely is old enough.

Part of the reason I finally pulled the trigger on signing up is they offered this new online physical fitness tracking with ability to enter a sweepstakes for prizes every week.  You complete their fitness video daily, walk for at least 30 minutes and voilà, you have entries in the drawings.

1. I discovered that it’s not the hot flashes that cause the painful prickly feeling in my arms, hands and upper torso (and sometimes my legs), it’s sweating.  I sweat from the hot flashes, but walking at a brisk pace also makes me sweat.  The times I have walked up to Starbucks, I thought it was a hot flash, nope, it’s sweating from exercise or a hot flash that brings on the painful prickles.
2. Walking for more than 10 minutes at a time is painful.  I’ve been sitting her typing for a while and my feet still bother me.   Not as bad as they did when I finally got off the treadmill, but they are still irritated.
3. We won’t talk about how my fingers feel right now.
4. My sports tank shows how my right breast sags compared to my left breast.  In the picture it makes my right breast look bigger, but that is an illusion from the sagging down.  In person you can see the right breast is really smaller than the left breast.  (And what you see here is pretty much what they look like without anything on… except the left one is more flat on the bottom, triangular shaped.)

So yes, I still hate my breasts, and really hate when Hubby has to change the gauze in my boob every day.  I hate having him look at my breasts now.  And I am still having a hard time believing I will ever let him look at them again once all this is done.  I have a hard time imagining there will be a day when I won’t feel so self conscience about my breasts and how ugly they are now.   They are uncomfortable to sleep with too. My breasts have never been this naturally high on my chest, they don’t move as much and when I lay on my side, I have to move my arm up more to make room for this “thing” on my chest that doesn’t move out of the way anymore.  I find myself waking up more often during the night because my arm is cramped and I need to move.  Between that and hot flashes I am amazed I sleep at all!

I go days without thinking about my boobs, and then wham, there it is, staring me in the face, my ugly boobs.  And I think to myself, why can’t I get over this?  Why am I so fixated on my damn boobs?  Ok yeah, I had great boobs.  Perfect boobs for me.  Now, so they are not perfect, but I still have my own boobs!

I sarcastically laugh to myself every time I hear the phrase breast conserving surgery.  How is having half my breast surgically removed breast conserving? (This is rhetorical, don’t answer… I know the answer, I just don’t like it right now.)  The boob was trying to kill me though…  And then I voluntarily allowed another surgeon to remove half the other one.  So why am I having so much grief over this?  Why am I so hurt over losing my pretty boobs?  I get to live!  I didn’t have my whole breast removed to be replaced with silicon later.  I wasn’t left with non-feeling fake boobs as so many other women.  They don’t seem to mind that they have completely fake boobs and no sensation.  (I know this as we have talked about it in group.  Right now there is only one other woman who is having self image issues, and hers is more that she thinks the surgical scar and having a port along with being bald make her look sick.  She doesn’t want to look sick.)  I still get to have sensation in my real breasts.  Why all the regret, the sadness, the ache?  Why am I having so much difficulty with this?  Hubby says he doesn’t care, so why do I care so much?  And then I think, what happens to them as I lose this damn weight I want to get rid of?  Will they be even smaller and will this still leave me feeling out of balance?  Will I still hate my body?  And why now do I hate my body?  Why now do I have such body issues?  I still have no answer to any of these questions.

My hair is starting to curl.  The sides are twice as long as the top of my hair and it’s the sides starting to curl.  I wonder if I should call my hairdressers and ask them if we should trim up the sides?  My hair is still baby soft, and I worry that trimming it will change the texture.  It will no longer be that baby soft feeling when I run my hands over it.  It’s soothing to touch my hair right now.  With the curls starting it looks like little frizzies on the sides of my head.

Today is National Doughnut Day.  To celebrate we went to King’s Hawaiian in Torrance for lunch.  So far we’re not all that impressed with the lunch foods, but their pastries are divine!   We picked up two pieces of Paradise cake to go for our dessert tonight along with coconut bars.  (Had to get a type of doughnut, it is National Doughnut day!)

Life is wondering if I will ever love my body again

 

Today is the day we remember the sacrifices of The War of 1812; The Mexican-American War; The Cival War; The Great War, The War to End All Wars or more commonly known now as World War I; World War II; the Korean Conflict, the Vietnam conflict, the Persian Gulf Conflict; the Iraq Conflict; the Afghanistan Conflict, (these are conflicts as we never declared war in these locations), I really don’t want to continue. Memorial Day was specifically created to honor those who have died in Service to the United States of America. So many lives lost, disrupted, destroyed, irreparably changed, souls fighting to regain a semblance of a new normal. My heart breaks for those left behind mourning their loss, for those who returned broken and not understood. My heart aches for the losses the United States and the world has suffered over land, ideology, theology, and ego. But we go on, we remember and honor our lost men and women, then tomorrow we go back to our daily lives. May the weight of today lay on the shoulders of our countries leadership and help guide them in their future decisions.

Now that I have that heavy weight in my heart lightened a bit by sharing, I can share what really lightens my heart. I’ve had a weekend of reminders of why I love this man and why I married him. It has felt so right to have a weekend of reminders. I didn’t feel like I needed them, and yet, my heart is lighter because of the reminders. It started Saturday night when I thought we would be watching the DVD we’ve had for the past month from Netflix – La La Land. Turns out Hubby had a surprise for me, he discovered the 2004 movie of “The Phantom of the Opera” was available to stream. Knowing I have never seen Phantom, and it has been on my wish list of plays to see, my heart swelled when I was surprised when I found out what we would be watching. It was a wonderful production and we were both amazed at the cast and their talent. My heart swelled at this little reminder that me and my little desires are always at the forefront of his mind.

Sunday, because we had no kids coming over, Hubby said he was taking me to Canter’s Deli for an early dinner. Another one of my little wishes, a Canter’s Reuben, their dill pickles, and maybe a cheese blintz. As we were driving there I was thinking maybe we should stop at the bakery on the way out and bring home some dessert to eat while we watched that movie we still had – La La Land. Just as I was about to say this to Hubby, he said it to me. Great minds! I had to chuckle as yet again, here was my reminder that I have a wonderful mate.

We had a wonderful dinner and Hubby took a different way home, a route he’d never driven before. I was surprised he did this voluntarily and he actually liked the drive. Much better than the drive out to Canter’s where someone tried to wipe us into the K-rail barrier as he raced to get into the exit only lane at the very last second in near bumper to bumper traffic. Nothing like a little near death excitement to enliven your drive. When we got home we finally set up to watch that DVD that had been hanging around for the past month. Hubby got the DVD player all set up and inserted the DVD, only for the DVD player to give us the message it could not play the DVD. He washed the disc and we tried again, nope, La La Land is not a movie we would be seeing.

We went back to Streaming Netflix and decided on “The Week Of”, an Adam Sandler movie filmed exclusively for Netflix. It was funny and heartwarming, and at the end it made both of us teary. Darn you Adam Sandler! We still had time to kill before we would be ready to head to bed so we decided to watch the Steve Martin and Martin Short Netflix comedy special.

Now at this point you need to know about our first date. It was a week and a day after we first met. We went out on a Wednesday night, dinner after work. I was temping at a company in downtown Long Beach, so we met downtown and picked a restaurant on the main street in downtown. I wore a long lace skirt, white lace up boots, a red shirt and a blue boyfriend blazer. We sat outside, and we talked as we ate. At one point he brought up music, and asked me who my favorite artist was or band. I love an eclectic range of music, and when I am put on the spot to name my favorite, just like naming my favorite color, what day of the week is it? So there I was on a first date with a guy I found charming and adorable with great legs, and he was asking me about music and who I like. I tried to answer his question with explaining my wide taste. I love drum and bagpipe music, classical, rock, country, some rap, you name it. He then asked me to name my top picks out of all my likes. The Doors, Queen – Freddie Mercury, and Bagpipes – it was Wednesday. He took all this in and looked at me and said, “So if I could find a CD of The Doors music played on bagpipes I’d be in?” Made me laugh and like him even more.

So there we were watching the comedy show and Martin Short did a bagpipe skit. It was funny, but the best part was when my husband looked over at me and said the only thing that would be better with this skit is if he played a Doors song. 23+ years later and he still remembers. I love this man. This man who makes me laugh. This man who holds me together while I try to fall apart. This man who remembers my little things, and surprises me with my own little things. This man who worries about our future. This man who worries about my future without him. This man who worries about my kids. This man who loves my kids so much they are his kids. This man who swallows his own fears to help me face mine. This man who plays my nurse every day. This man who holds my hand through thick and thin. This man who loves me for me, and tells me so in so many little and big ways. I thank God everyday for this man. I just hope that I am able to give him as much as he gives me.

Life is knowing I am loved by a wonderful man

At this point in time, I am healing slowly but surely. I think I am moving beyond the hate of my new boobs, to extreme dislike. This is an improvement, I think… I still cannot imagine myself being intimate with my husband without my breasts being completely covered. Like when you see that “love” scene in a show where the woman has a bra on, and you think, “Wow, she wears a bra to bed and never takes it off?” I used to think that was weird they would depict this only because they couldn’t get a contract sign off on bare boobs. Now I am thinking all those times it was a woman who was ashamed of her breasts, like me. Maybe ashamed is a bit strong; just don’t like them anymore and not comfortable with them being bare for anyone else to see.

I am feeling stronger now and feel like I can walk almost every day. My feet still bother me, and my hands by the end of the day are so irritated I have to take time just letting them rest for a bit in bed so I can fall asleep. I do have an appointment with my Primary Care doc to get a referral to a neurologist so we can work on dealing with the neuropathy correctly and find out of there is any relief until my nerves heal. In the mean time, I do what I can to keep moving and balance the irritation/pain with resting.

From the very beginning of this whole thing, sleep has been an issue for me. The first month I could understand why I was not sleeping, that dreaded “C” word, the unknown. Then chemo started and that just contributed to a screwed up sleep schedule. Since I stopped chemo in February I have been trying to catch up on all the sleep I lost is what it seems like. Now over the past month I have noticed I am having a harder time sleeping. At all… There are at least 3 days in a 7 day period, sometimes more, when I just cannot sleep at all. I may get a 10 or 20 minute cat nap in sometime during the night, but that is it. I started taking the sleeping pills I had from last October. I take one night and try to sleep on my own the next night only to be awake the entire night. The following night I take another sleeping pill. There have been a few times when even taking the sleeping pill doesn’t help. Even today; I slept maybe an hour last night in 10 to 20 minute cat naps. I am surprised at this point I am not passed out on the sofa drooling and snoring. I am no worried I may become addicted to Lunesta. I worry that I will never have a normal sleep cycle again.

I am also having problems with my arms when I sleep. I am a side sleeper and the circulation in my arms is being cut off now. I don’t know if this is a byproduct of the neuropathy, or if I am now so tense from lack of sleep that I am cutting off the blood flow in my arms. Another issue to ask the neurologist about.

This is a long weekend – Memorial Day is Monday. The kids have already told us they will not be coming over for dinner tomorrow, so we’ve decided to go out tomorrow night. I am looking forward to our dinner out. Date night. I want date night. I want to go out and hold hands. Not hold hands as we go face another doctor appointment together, or when we go grocery shopping and move through our errands that need to be completed. I want date night, where we go out, hold hands and enjoy each other with no other agenda other than to hold hands and enjoy the companionship.

I will try to sleep tonight without taking a Lunesta and see how it goes. In the meantime, Hubby and I are going to watch another movie tonight. We’ve had LA La Land DVD for over a month now, it’s time we watched it.

Life is learning to sleep again

 

As I previously alluded too, we (Hubby and I), decided I am ready to start driving, but first we planned a short drive with little traffic. It was Tuesday night after support group, I drove us home.  I felt like I was 16 years old again and getting ready for my driving test to get my license.  I thought if I had any issues it would be with my feet. I worried I would not be able to feel the difference between the gas and brake pedal. Turns out it wasn’t my feet that I had issues with, it was my fingers. Not so much a problem, but I definitely felt my fingers start to act up. Told Hubby I can’t be doing any long drives yet, but local driving I can handle.
Wednesday we did a bit of grocery shopping to tide us over for the remainder of the week and I got myself ready for my mother’s day gift from the darling daughter – Paint Night. It was to be held at El Torito in Redondo Beach on the pier. For the first time in many months, I wanted to actually try putting on some makeup. I got myself ready and the Darling Daughter picked me up and we headed to the Pier for the chance to be coached through painting a lovely beach and flower scene. We arrived at El Torito only to be told that Paint Night had been cancelled. The Darling Daughter was ticked, she had no notification. Instead we sat at the bar, ordered drinks, an appetizer and we talked, laughed, and I shared with her the technical name of the issue we both suffer from – Vasovagal Reflex. She asked me to repeat that, so I pulled it up in Google on my phone. She took one look at it typed out and laughed and stated it looked like a dirty word. Between our laughter I decided yes, Vasovagal Reflex, also known as Vasovagal Syncooy, is a dirty word, or more like a dirty trick our body plays on us.
It is the bodies over reaction to certain triggers. For some it is the sight of blood, or an emotional response. Stress can trigger it as well. What happens physically is a sudden drop of blood pressure and lowered heart rate. The part of the nervous system that regulates your heart rate and blood pressure malfunctions in response to whatever it is that triggers you and your heart rate slows, and the blood vessels in your lower extremities (legs) dilate. This allows the blood to pool in your legs, which in turn lowers your blood pressure. This along with the slowed heart rate reduces blood flow to the brain, and voilà, you faint. Or if you are like me, you have learned the symptoms and know how to stop the process so you don’t faint. Symptoms include, lightheadedness, tunnel vision, and nausea, feeling warm along with a cold, clammy sweat, yawning and blurred vision. All my typical symptoms. I start with the flush of heat, with nausea, quickly followed by the cold, clammy sweat on my neck and face, and the lightheadedness, blurred and tunnel vision are next, and the yawning usually shows up once I am working on remedy – getting my feet above my heart, or the very least, my head down between my knees. If I don’t get my head down or my feet up, or both quickly, I will pass out.
I used to have this reaction to blood draws and IV starts, but I have learned how to control my breathing and brain during these medical procedures. Now it just happens when I have to go through a biopsy, or the guide wire placement for the lumpectomy. I tried using my normal techniques to get me through this, visualization and breathing, but so far I am batting zero. Someday I’ll figure out how to control this stupid human trick my body knows oh so well.
I did learn that there are those like me that don’t have the classic triggers, but more subtle triggers like the body feeling like it’s going to experience pain, but doesn’t. Or a noise that sounds like it’s going to hurt.

We commiserated about our shared issue with Vasovagal Reflex and had a great night. At one point I had to excuse myself to the restroom and when I returned most of our shared appetizer was gone and the Darling Daughter told me to polish it off… Now it was my turn to say that is a dirty word!

Polish it off…  wow!

 

 

One of the things we talked about is my cancer.  I admitted that there are times right now when I am afraid.  There are basically 5 types of breast cancer, and on a scale of 1 to 5 with 1 being the least deadly and 5 being the most, (in the simplest terms I could explain) I had number 4.  How every once in a while, as I wait for my boob to heal, I worry that I am allowing that one rogue cancel cell to escape, to hide in my blood or bone marrow, giving it a better chance at taking a bat at me in the future.  I also told her that if I can get past 2 1/2 years without a new lesion , my chances of recurrence diminish, and if I can get past 5 years without recurrence, my chances diminish again.  Also told her, so I could remind myself again, that my complete response to chemo reduced my chances for recurrence, and radiation will reduce it even more.  Not down to the same single digit percentages my mom has of recurrence, but I can get my chances of recurrence down lower.  Still double digits, but lower.  Keeping those thoughts in front of the other ones that try to remind me this is bad.

We had a great night talking, despite the frank talk about my cancer, and decided we would try again.  The Darling Daughter presented me with new options today.  Next up “Galaxy in the Pines” on a Saturday night in June.  Hopefully this one will not get cancelled.

The Mindfulness lecture was cancelled for today, so instead I booked myself an appointment to get my legs waxed.  One thing I did notice since my hair (all my hair) started growing back was the fuzz on my face was the first to show up.   And it came back like it was compensating for the months of having no body hair.  Since then, I have “trimmed” that fuzz twice and now it has pretty much slowed in growth and I have not had to trim it back again.  I am knocking on wood right now so I don’t curse myself.  Women don’t like having really fuzzy faces…  The hair on my legs was getting a little ugly.   I had one razor left from before this whole cancer thing, and I used it, but that hair came back with a vengeance.  I made the decision to wax it all off in hopes this would at least thin it out a bit when it grows back.  So today I have smooth legs.  Now if only my nails would cooperate and grow in normally.

Life is working on my new normal

 

Today is my next follow up with Dr. Goldberg (plastic surgeon). I have been hoping against all hope that my hole will be allowed to close up so I can get on with this journey and move completely into cancer survivor mode. Hubby on the other hand is more on the side it will heal when it heals and if it’s not today, then we go on day by day and it will heal eventually. No big deal.

It’s been 8 months now since my diagnosis. I thought for sure I’d be finishing up with the end of my treatment plan about now and getting myself ready to go back to work. I haven’t even started radiation yet which will take at least 7 to 8 weeks. I find myself frustrated, angry, afraid, eager, and not in control. I look at the hair on my head every day and wonder when it will be long enough to see if my curls come back. I “listen” to my body to note the improvements as I recover from chemo at the same time I wonder what radiation will temporarily take away. I occasionally let the dragon loose to worry about free ranging cancer cells lurking in my blood stream or bone marrow just waiting for their next turn to take a bat at me, and is this waiting for my boob to heal giving them better odds at getting that second chance? Then I put the dragon back into his spot.

I receive a daily email with a brief essay on spiritual and physical issues with insights on how to deal with them in a proactive and life affirming way. Today’s essay was Control, and could not have been timed more perfectly. It reminded me that there are things we can control and there are things we cannot. When we find ourselves in a situation we cannot control, it is better to let go and “enjoy the ride” instead of making ourselves miserable trying to control the situation, which basically equates to giving in to our fear and anxiety. It reminded me within the first paragraph that letting go, accepting that I cannot control the uncontrollable, will allow me to experience freedom and joy in the “journey”. It reminded me that letting go of control is not as easy as it seems. And me being such a control freak at times, letting go of the attempt to control is not an easy task for me. It reminded me that it takes courage to let go and let life happen without trying to control it. What I can control is how I react to the uncontrollable.

Here is where I take a deep breath and face the uncontrollable with grit and a grin to find the amusement in this terrifying journey to survivorship.

A couple hours later and I am again on a three week hold while my breast continues to slowly heal. Dr. Goldberg is very happy with the improvement on the visual healing of my breasts. She believes my breasts match even better now. She is very happy with the progress on the healing of the hole in my boob. I’ve gone from 6 cm cavity to the left to a little over 1 cm, and the vertical cavity is mostly all healed. Very little space left on the vertical cavity; for the most part it’s completely healed on that side. She thinks the remaining cavity will close up in the next 3 weeks. Then and only then can I call the Radiation Oncologist to reschedule my mapping and subsequent radiation therapy. Dr. Goldberg said if I start radiation therapy before the boob is healed it will never close up. So I take another deep breath and face the next three weeks knowing I cannot control this.

On the way to Dr. Goldberg’s office I had brought with me in the car a bottle of Pellegrino to sip during our travels. It had rolled on the floor at one particular intersection and I mistakenly assumed because I had already opened the bottle, drank from it previously and added a lime slice, it would be fine. Nope, I cracked the lid open and I had Pellegrino foaming up all over the place while I quickly struggled to screw the lid back on the bottle. I had a lap full of bubbly water, and Hubby giving me a sideways look like “I can’t believe you just did that” comment about to roll off his tongue. As I grabbed napkins from the glove box the second thought to go through my brain came out of my mouth – “I am going to look like I peed my pants!” It was at that point, as I was sopping up the water from my lap, that I started laughing. I couldn’t help myself, this was damn funny! Hubby didn’t think it was as funny as I found the situation. Yes, I pulled a no brainer move, and now I had a wet lap, but that is funny shit! Just wish Hubby could have laughed as hard as I did. My leggings dried out in plenty of time so I didn’t have to walk through the building and into the doctor’s office looking like I had peed myself. And Hubby didn’t have to be embarrassed by the no brainer move his wife just pulled.

Taking another deep breath to cleanse out the anxiety, frustration and angst of not being in control, and I will face the coming weeks of continued boob packing and bandaging with a renewed sense of finding the humorous in my current everyday situation.

Life is like a roller coaster, to be ridden with joyous abandon

 

I’ve been attending a weekly lecture series offered at the Cancer Support Community about Mindfulness. I assumed because I still have issues controlling my sympathetic nervous system when I am going through medical procedures that I needed more direction in mindfulness and meditation.

We can always use refreshers, reminders, a new perspective, a new insight as to what we can do to help ourselves. So far I have found that there has been no new insight or perspective, just reminders that what I do, and have been doing is helping me in the long run. It has reminded me that paying attention to my breathing and how different emotions make me feel is good. Paying attention to how my gut, my heart, my lungs, even my arms and legs feel is a good way to learn what bothers me emotionally. I can than take the time to explore those emotions, a little at a time and figure out the root of what irritates, hurts, scares, haunts me and with accepting, non-judgmental review, I can decide if I want to let whatever the issue is “bother” me in the future, and if I will allow it to bother me, for how long. I have four more weeks of this lecture series, and I am hoping I will find some other tools to help me with my physical reactions.

I work on meditation daily, and take time for mindfulness, which is part of meditation, but different. With meditation I usually focus on a specific area of my body or a one word affirmation and keep (or at least try) to keep my focus on what I have chosen to focus on. Or I’ll do a general review of my body and concentrate on the chakras and the colors that represent the chakras.

Mindfulness is allowing yourself to notice your body and the things around you at that moment. Notice how your butt feels sitting in the chair you’re in, or on the floor. Notice how your shoulders feel. Notice how you’re breathing, do you hold your breath? Are you breathing fast? Are you taking slow shallow or deep breaths? No judgment on how you are breathing, just notice it and move on. What noises do you hear around you? Do you hear birds? Do you hear traffic? The wind? The refrigerator? Practice mindfulness when having a conversation, really listen to the person you are talking with, without thinking about how you want to respond. This one is hard…. Practice it when you eat, really notice the flavor of the bite of food, how it feels when you chew it, the heat or coolness of what you are eating. How your mouth feels, what it feels like when you swallow.

I try to take time everyday to both. And yet, I still have a drop in BP when my body perceives a threat I cannot physically feel. I break out in a sweat, I feel cold and clammy, especially on the back of my neck, my stomach goes queasy, and I feel faint. I have to get my head down, my feet up. After the initial wanting to throw up and faint phase, my BP skyrockets. It intensifies the nausea, makes my body feel uncomfortable. I feel like I need to run, run away and fast. But I still feel like I am going to throw up and pass out! I no longer do this when I have a blood draw, or an IV started. But I did this when I had the biopsy done on Blink. I did this when they had to insert the guide wire for the lumpectomy. It happened when the plastic surgeon poked open the hole in my right breast to drain the seroma. It happened when she supposedly numbed up my breast to cut the hole bigger a couple weeks ago, and then cut the healed tissue inside to jump start the healing process again. It has happened once when I stubbed my big toe and it made a really loud cracking noise. My toe was fine, the rest of me not so much.

So in the meantime I will continue with my meditation and mindfulness, and I will continue going to the lecture series, and I will pray that one day I will be able to gain control of my sympathetic nervous system.

This morning when Hubby was getting ready to re-stuff the boob, he said the cavity was a rip in the space-time continuum and we should be on the lookout for pterodactyls. He makes me laugh! When I texted the kids, the Middle Son texted back that if he had Photoshop skills he’d take the picture of the hole in my boob, add a TARDIS flying out of it chasing a pterodactyl. Part of me says I should have this as a tattoo on the bottom of my breast! Maybe I can make a temp tattoo with this and have it there for the next appointment with Dr. Goldberg on Monday. Now that would be funny! I don’t think she would get the humor…

Life is remembering to breathe

Despite last week Hubby’s back deciding to fall out, with much tender care of his very achy back we were able to get him recovered enough to make our much anticipated trip to the San Francisco Bay Area to have a visit with my family.

Hubby was diagnosed with Degenerative Disc Disease several years ago.  Eventually he will have to seek a surgical solution, but in the mean time he works on his core to keep his back as stable as possible and occasionally suffers with his back falling out.  It really feels like it falls, he makes a slight move, like he did last week brushing his teeth and shift goes his back.  It feels like it shifts and falls near his lower back and sends shooting pain up and down his main nerves.   It takes days for his back to settle down and the inflammation of his nerves to come under control.  To have this happen 3 days prior to a planned 6 hour drive was not a good sign for us to be able to keep our planned trip.  But we did everything we could to support his back and all our babying worked well enough that he felt well enough to make the drive.

Friday morning we left an hour later than we had planned, but we made it up in good time and Hubby felt strong enough to even head out to dinner with my parents after we arrived.  It was so nice to hug my dad and stepmom again.

Dinner was lovely and we had an enjoyable evening getting caught back up with everything that has been going on since we last saw each other this past November when they made the drive down for Thanksgiving.  Even their kitty, who can be shy, decided she remembered us and we were good people, visited with us after dinner.

Saturday my parents hosted all the family in the Bay Area for dinner so we could all be together.  Dad had asked me what I wanted the menu to be for this party, so I told him Kitchen Sink Salad (everything BUT lettuce as my Stepmom doesn’t like lettuce), risotto (which Stepmom has a fantastic imagination and dresses up this wonderfully creamy rice into exotic flavors), and Surf and Turf.  Dad is the meat guy, and almost everything is Bar-B-Qued, so I let him choose his best – Prime Rib and Lobster Tails.  And of course the appetizers!

My “little” cousin, who’s wedding I kind of attended this past January (my 6′ two dimensional me), brought me a taste of one of his prized whiskies.  My Uncle and Aunt brought a zucchini casserole to compliment our dinner.  One of my little brothers brought flowers for all the moms.  My Uncle and my other almost “Uncle” both brought their guitars and played for us while dinner was being prepared.  I could hear them playing together in the back yard while I sat in the room off the kitchen visiting with my cousins.

There were 15 of us in my parent’s house.  When dinner was served it was buffet style and find any seat to sit.  After we ate we were all sitting in the front room, every seat and floor space was taken while we shared stories of the past for the younger generations and for those that had not heard all the stories.  We laughed, and laughed some more.  We started the planning another WWT (Wisnia Women’s Retreat, and yes it is WWT because we cannot spell!)  Once I am done with all my treatment we will do this WWT.  It’s been almost 20 years since the last one.   We had some great stories of the WWT’s we had in the past, and the killing of birds (birds flew into the cars driving on highways, we didn’t aim for them)!  We shared stories of my little brother’s adventures in the Navy, and the funniest things we have said and done over the years.  Stories of broken bones and the scenarios that followed the breaking of those bones, which of course were funny, because that is how we roll.  The stories of vegetables, and shopping and so much more.

I was introduced to two new apps, one from each of my female cousins. One let me create my own avatar:

 

 

 

 

And the other app is similar to Snapchat:

 

 

 

 

 

 

 

As my family said their good byes, it was bitter sweet.  I know I will get to see them again soon.  But it has felt like forever since I got to see them, it was such a wonderful night and I can hardly wait for the next one.

Sunday was Mother’s Day and Dad made his crepe style pancakes for us for breakfast along with a pitcher of Gin Fizzes that I missed on New Year’s Day.  We all decided that shopping for Sunday night’s dinner was the only activity we wanted to do that day.   Sunday night came all too soon, and had to give our final goodbyes to my Stepmom.  She had to get up really early for work on Monday.

 

Monday morning we packed the car to head back home, said our final goodbyes to Dad.   This was one of the hardest goodbyes.  I think because I could tell he didn’t want to say goodbye either.  But I do have things to do at home, follow up on my insurance yet again as they still have not answered me as to my Radiation Oncologist and whether if she is still covered under my new group.  Next week I get to follow up with the Plastic Surgeon again.   I really am hoping next week we get to let the hole close up.  I am so done with having gauze packing strip poked into my boob every day.

The Toothless Wonder Cat was happy to have us back home and even though we were expected him to be upset with us and not come around, he was ready for dinner earlier than normal and was very happy to sit on my lap the rest of the night before we went to bed.

Tuesday we did the grocery shopping and then there was Support Group.  Hubby’s back was still bothering him quite a bit so we agreed to have him drop me at group and he’d come back later to pick me up when it was over.   We had a new gal in our Breast Cancer Group.  She was diagnosed with Triple Negative Cancer mid-January.  The very next day she was told she was pregnant.  Because of her pregnancy, they did her lumpectomy first.  There was debate over how they would handle the rest of her treatment – chemo and radiation and her unexpected pregnancy.  She and her husband had to make a very hard decision, keep the baby or risk her life and having their 1 1/2 year old daughter possibly grow up without her mother.  They decided they should concentrate on her health and ended the pregnancy.  How heartbreaking.  She is terrified.  I understand.  And being the only other triple negative BC diagnosis in our group currently, I was able to give her some reassuring statistics.  Her incision opened up about 4 weeks post op and she too had to push gauze into the open incision areas until it healed.  She said it took about a month and then she started chemo.  Her chemo regime is the same I was put on except the Carboplatin.  This is one of the newest drugs to the BC Chemo regime.  I gave her my number and email in case she ever felt the need to talk.  My friend Linda did as well.  She has a wonderful support system, and now she has a community that understands what she is going through.  We will be there for her, just as we are there for each other.  I also need to reach out to one of the gals that hasn’t been able to come to group as she had problems with her incision healing as well, and chemo has been really hard on her.  She wants to talk with me too.

By 10:30 PM I had such a headache, I went to bed before Hubby and slept until about 5:30 AM.  I was still so very tired after all this activity this past weekend and keeping it up through Tuesday.  I was napping on the chaise several hours later.  Woke up about 11ish.  Still tired and taking it very easy today.  Haven’t even bothered to change from my PJs.

Life is recharging with the family

For some reason I have been extra tired this past week. After last Thursday and all that frustration I was excited to have my cousin come visit and make a trip down to Escondido to surprise everyone in my Faire family with a surprise visit.

Deda arrived Friday night and we were home by about 9PM. Deda said we had to do show and tell with our boobs. Since she had a reduction many years ago, and has some experience with Plastic Surgery and what can be fixed she wanted to see what I was upset about and to show me what my boobs would look like once they completely healed.

So we did show and tell. I’ve seen her breasts before, and was impressed with her reduction and how the scars faded. Her boobs look like normal, natural boobs. Mine, not so much. She looked at mine, could see how the right one is smaller, sags, and pulls to the right. It folds over and touches my chest wall below my breast. She complained about one of her nipples being more oval rather than round, but I’ve had the same problem with my left nipple/areola as well, and this was before surgery. She also is a little frustrated that her nipples point slightly out rather than forward. That could be normal position as well. These are little things she doesn’t like about her breasts. I told her how I don’t like that mine are square on the bottom, flat. They sit so high up now too, higher than my pre-surgery breasts ever did. Even when they were perky little teenage boobs, they have never been this high on my chest.

And there is the smaller, saggier, pull to the right, right breast with the leaky hole at the bottom where my vertical incision and horizontal incision meet.
Deda agreed this is a bad boob job. It can be fixed, and just as Hubby says, wait until next year before I seek a second opinion to get them fixed. I am still worried that trying to fix them will only make them worse and I’ll go through all this pain again for nothing, to still hate my boobs.

Enough with the boob sharing, we went to bed so we could get up the next morning and go to Faire. We didn’t leave as early as we had originally planned; we lay in bed and talked in the morning for over an hour. We talked about my neuropathy, and I was able to finally put a decent description to how my fingers feel. It feels like have really thick calluses on all my finger tips and they always feel super dry, like they should be cracked and peeling dry. Then when I have used them too much (which doesn’t take a lot), the tingly numbness sets in as well, and they just ache with that tingly numbness in my fingertips and it lasts for hours. This is one reason why I don’t want to get out of bed in the morning, the minute my feet hit the floor and I start doing anything, that tingly numb ache sets in and doesn’t go away.

Hubby said last week that once we know for sure if we have to change our primary care physician we will make an appointment to get a referral to a neurologist to get input from an expert on neuropathy and get advice on what exercise is best for me so I can start getting back on track to my weight loss program that I has started last year. We both think this will help me feel better about myself.

Anyway, Deda and I stopped at Starbucks, I got a little caught up with one my other favorite baristas who only works on the weekends, and away we went to faire. We arrived about 10 minutes before gate opening and we were allowed to check in as Gate Listed and hurry back to our encampment to surprise those sitting there (except our guild mistress who knew I was coming as she had to submit the gate list to the producers of the Faire).

We were told which tent we could use to dress and we changed into fair garb. My feet don’t like any kind of pressure on them, so just putting on socks will trigger the “ache”. There are intensities to the ache, so socks is minor, but walking makes it much worse. The thicker the cushion in my shoes, the longer I can walk before the ache starts to really bother me. Deda and I did take a walk through the faire site, and I visited with one of my friends that has the fairy encampment on the other side of the fair. It was nice to see her in her element and listen to the fairy stories told to the kids on the “Queen’s Quest”. Fairies also trade with “dragon tears”, “doubloons, and “trinkets”. It was fun watching the kids making trades with Danu and her fairies.

Several trips were made to the Lemonade vendor for nice cool fresh cups of lemonade. I made it until about 3 PM, by then I was ready to call it a day. I was too tired to interact with people anymore and my feet were starting to get to the point where I didn’t want to have anything on them anymore. I had already removed my faire boots and the thought of putting them back on for any length of time was daunting.

The Darling Daughter helped us carry all our stuff back to the car and we called Hubby to let him know we were on our way home. We all decided since it was the final round of Super Cross we would order pizza and watch the races that night.

Sunday Deda and I went to Starbucks again and headed over to the tea shop in old Torrance to pick up some of their Earl Grey Tea. It was some of the best Earl Grey I’ve had and I’ve wanted to try more since last December when we went there to have a Tea date. It was right after that when my tastebuds all went out and dairy started tasting horrible. Since I like my black tea with cream and sugar, going back to get Tea from the shop was not something on my radar.

We knew The Darling Daughter would not be coming over for dinner so decided since we had to take Deda back to the airport we would take the Middle Son and his girlfriend and go out to dinner. We also planned a movie for Hubby, Deda and I earlier in the day. We went to see the latest Avengers movie at Deda’s now favorite movie theater. They have great reclining pre-assigned seats.

I have been extra tired ever since last weekend. I think I was able to catch up finally. I had a hard time sleeping last night, but I slept in extra long today. Yesterday Dr. Goldberg’s office confirmed that the culture taken from the cavity in my boob came back completely negative. So that is a good thing, I guess. No infection, just my boob stopped healing. Hopefully the cuts Dr. Goldberg made in the tissue will work and the healing process has started again.

I still have not heard back from my PCP’s office about whether all my specialists are in the new “group” my PCP joined. I called there again today and spoke with a different gal who tried once again to tell me that all current appointments will be honored. Well that is not good enough as I still have radiation treatment to go and I like the radiation oncologist and don’t want to change right now. And I still have the hole in my boob, and Dr. Goldberg needs to fix her mess with that before I let her off the hook. She knows I don’t like my right boob, but I don’t think she realizes I don’t like either boob.

So that is my good news, no infection. And I am not imagining that my boobs are ugly, and the plastic surgery was just bad. Now I just have to wait until next year before I decide if I’m going to do anything about it. Deda did ask me if I could do it all over what I would do differently. I’d probably ask for a flap transfer or fat graft to make up for the tissue removed during the lumpectomy rather than have my left breast reduced to match. I think that would be a better choice for me, if I could have done this differently. I forgot that could have been an option, or to even ask if that was an option. Either that, or just live with one breast smaller than the other. I thought that would be difficult to deal with. Having a bad boob job, that’s been worse to deal with.

Life is living with your decisions

Yes, I mean FUCKING. Today was my three week follow up with Dr. Goldberg to check on the progress on the healing of the giant cavity in my boob and to get my final release for radiation treatment.

As much as I dread more treatment, I want this over. I know my process will not be done until I complete radiation treatment. I want my life back, I want my body to stop being pummeled and beaten up, I want it to heal and just be mine again. I want to be able to be me again without having to fight every day with the emotional and physical fall out of this fucking boob.

Dr. Goldberg was all excited until she pulled out the 8 to 10 inches of packing strip from the much smaller cavity in my right breast. She didn’t like the look of the fluid that has changed over the past few days, it has become thicker, more blood cells vs. platelets. The cavity has started to fill in with scar tissue, but the last few days we have only noted the change in fluid consistency and no more change in the size of the cavity. Dr. Goldberg said the change in the fluid could be one of two things, either an infection starting to set in, or my wound is trying to heal and it is no longer able to heal without intervention.

I have no other symptoms that would indicate infection. The fluid doesn’t have a bad smell, my breast is not, red, swollen or tender and I do not have a fever. Those are the good signs that this is not an infection. She took a swab of the fluid to send off to culture to be safe. We should have those results within 5 days. She doesn’t want to put me on an antibiotic until we know for sure if this is an infection and if so, what drugs it is susceptible to killing it.

Next she numbed up my breast around the remaining cavity area and proceeded to cut open the hole a little more, explaining to Hubby as she made him watch, that cutting the tissue, creating “fresh” wounds can kick start the healing mechanisms again. She then washed out the cavity really well with saline solution, and swabbed it out really well with gauze 2×2’s, telling Hubby this is what needs to be done going forward.  She uses a lot of saline, about 60 cc’s, compared to the 5 to 10 cc’s we’ve been using.  She then cut the inside of my breast where it had started to heal already. I felt that cut. She stuffed the cavity with gauze 2×2’s and taped gauze Telfapads over the new bigger opening in the bottom of my boob.

She is also ordering the Home Health Nurse to come back and take over the management of my wound care. I guess we will be hearing from her by tomorrow or something.

I asked her about starting radiation, and that is now put on hold until the boob is completely healed. I had really hoped with the sudden healing over the past two weeks that happened, today we would be told that we could let the hole close up and I could continue on my treatment plan and finally end this process. Move on to the surviving part. Not remain stuck in the treatment, temporary part.
Right now the temporary part is taking so damn long.

So that was a nice kick in the pants. Just when I thought I would be done with this part of the healing process, looking forward to moving forward, we’re told nope, not yet. Body is not done fucking with you yet.

From Dr. Goldberg’s office we did the grocery shopping and then came home. In the mail was a notice from my Health Insurance. Last week I received a letter from my Primary Care Physician advising she was closing her private practice under one sub-group within our HMO and moving to a multi-doctor practice with the same name as the Sub-group she practiced under in my HMO. Ok, it’s still within our HMO so I figured no big deal. Nope, the letter from the Insurance Company says she is moving from one Sub-Group within the HMO to another Sub-Group. All my referral specialty doctors for my cancer treatment plan were based on the sub-group within the HMO that I picked with her as my PCP. If I want to continue to see these same specialists – my Oncologist, my Surgeon, my Plastic Surgeon, my Radiation Oncologist, I have to validate that all those doctors are associated with the new sub-group that my PCP has joined.

If they are not, I can choose a new PCP within the old sub-group, or I keep my PCP and find new specialists. I can call my PCP’s office to validate if any of my current group of doctors are in the new group. Great, just one more kick in the ass.

I didn’t sleep at all last night, so all of this is completely overwhelming to my very bruised and sore emotional state. I have to call the Radiation Oncologists office as well to let them know we have to postpone my mapping and treatment plan until after May 21st as that is when I go back to Dr. Goldberg to check on my fucking boob.

I don’t want to see the new hole in my boob. I saw a lot of blood, and I have visions of this gaping wound now. I am not prepared to see or know any of this right now. I am sure it’s not nearly as bad as I am imagining. Hubby said the hole is just a little larger than it was before at the largest. Back then it was still smaller than the diameter of a standard #2 pencil. Just large enough to push a swab into if you were determined. Now she was able to shove a 2×2 gauze pad into it….

After we ate lunch, I took a nap. A long nap, but that did not really help me feel better about today’s events. I called Dr. Endicott’s office (radiation oncologist) and cancelled my two appointments and explained what is going on. I spoke with Nancy and she will relay the info to Dr. Endicott, and they will get in touch with Dr. Goldberg. I am to call back to schedule my new appointments once I am cleared by Dr. Goldberg.

I then called my PCP – Dr. Levee’s new office and asked about whether all my current specialists are covered under the new sub-group. The hospital and my Oncologist are, but Lisa will have to check on the others. She said it was no big deal; the HMO would give 30 to 45 days to finish up my treatment plans under my current specialists. Yeah, I’m not going to be done with my treatment plans in the next 30 to 45 days, so that is not going to work for me. If I have to change a doctor it’s going to be my PCP right now, not my specialists. Lisa understood that. She will check on the rest of my doctors to see if they are under the new sub-group and someone will get back to me in the next day or two.

I called Linda, my friend from group. I told her what happened today. She listened. She commiserated with me, reminded me that we can do this. Reminded me that I am not in this alone. Told me it was ok to vent out everything. Reminded me that we are more than cancer.

I told Hubby I am now afraid that he will never be able to see me again as his “wife”, he will only be able to see me as this scarred up cancer patient that he has had to care for all these damn months. How I am so embarrassed and ashamed of my body now, I don’t even want him to see me naked, and yet I have to bare to him every day the super ugly boob. I can’t imagine a time I will want to ever bare my breasts to him again. I told him of my hurts, how they drag me down. How I hate everything about me right now. I feel ugly. I’ve never felt ugly before. I feel ugly. I hate my head, I hate my butt, I hate my thighs, I hate my stomach, I hate my boobs. I hate my brain. I hate the neuropathy, I hate that I can’t even wear my wedding rings.

He let me leak tears of frustration and hurt, tears of sadness and hurt, tears of anger. He let the tears of my fear leak out of my eyes. I didn’t want to do this today; he is meeting with a childhood friend tonight before she heads back to Arizona. I didn’t want to dump all of my insecurities on him today. Not when he is getting the rare chance to go out and have fun, get away from being my near 24/7 care taker. I didn’t want him to have to take all this emotional baggage with him on his few hours off. But here I am falling apart all over him again.

We talked about my neuropathy and how much that is still a constant irritating pain in my daily life. He thought, hoped it was starting to feel better now that I was attempting to walk more. I told him no, it is just me trying to take my life back even if it hurts. He was afraid of that and his fear is that I will make the neuropathy worse or permanent by trying to exercise. He said we should go talk to Dr. Sikaria about the neuropathy, see what else we can do to help it heal and keep it from getting worse. What exercises I can do in the mean time that will not irritate it more. I told him I’d been rereading The Breast Book so I could reacquaint myself with my mom’s diagnosis, and the treatments recommended, statistics, and review the chapters on radiation treatment, long term effects of treatments, healing and living after everything is done. The author, Dr. Susan Love, suggested for neuropathy patients they should follow up with a neurologist. He said we would do that. Once I know if I will have to change my PCP or not, we will go from there to get the referral to a Neurologist to make sure we’re doing everything we can to help my neuropathy.

We talked about my weight, how I am now beyond uncomfortable in my body, I now hate it. He referred me back to the neuropathy and we will talk to a doctor about what is the best exercise for me, if a pool is necessary we’ll sign me up at a gym with a pool, or we’ll invest in one of those Endless Pools/Swim Spas. Something where I can take the weight off my feet and hands. We can figure this out so I feel better about me.

As for my rings, instead of trying to get them on my too puffy fingers we can put them on a chain around my neck. I can wear them that way. I never thought of that. This is why I love him. He brings me back out of my head and grounds me, finds solutions I just can’t think of right now. Reminds me this is temporary, this is curable, this is treatable, this is survivable. Mostly this is temporary. Reminds me why I love him. Reminds me he loves me for more things than just a body.
Talking after the bit of crying helped. Hubby asked me if I was better. Not yet, but better than I was 15 minutes before he asked, and eventually that will lead to being really better. It’s just really hard right now to take these little setbacks. I am trying really hard to not wallow in the bad, the sad, the hurt and keep moving myself forward. It’s just hard sometimes, harder than I thought it would be, taking longer than I thought it would, scarred me more than I ever figured, shook me to my core more than I ever imagined.

Hubby told me this year, none of this matters. What matters is I am alive. I will survive this will all get better. And next year I will wonder why I every fell apart. Why I even had all this doubts and insecurities.

After a nap, a little crying, some reassurance, I am back to focusing on what is good in my life. A snugly lap kitty that comes in every night for food and love. A husband that sees me beyond my current physical and emotional state. Family of friends that bless you with reminders that you are a survivor.  Friends who care, listen, and even post the best things in FaceBook, and they don’t even know how much they have cheered me. A family that loves me beyond measure and lets me know in so many big and little ways. A job that I love waiting for me, and looking forward to going back to work with people I enjoy so much.

Life is remembering again TCST (mostly Temporary)

Last Tuesday was a disaster day for me.  Hubby had not been sleeping well for days, so I am sure his irritability was not helping my overall state.  It started with me pulling out my sewing machine to tailor the dress I had ordered on line for the wedding of the son from another mother this past weekend.  Dress was too roomy in the bust now and needed to be hemmed, despite having ordered a petite size which usually leaves me with a hemline that is perfect and at times a bit short.  Not this time, it was way too long.  I set up my sewing machine to discover the presser foot bar would not raise or lower any longer.  It was stuck in one position.  This was not a good thing.  My machine would not run.  The last time I used it, the machine ran perfectly.  That totally put me in a tailspin.  My dress would not fit.  In a panic I turned to my closet and tried on a dress I already had, knowing it would be too tight as I am still carrying extra weight from the chemo puffiness.  Not that I was at an ideal weight or size to begin with, but this is not helping me feel normal, nor is this helping me with myself image.

Of course the dress didn’t fit correctly, and when I asked Hubby his opinion if I could get away with it, the look on his face was enough to tell me that no, going looking like a stuffed sausage was not an option.  When he asked me about the dress I ordered I cried about my broken sewing machine.  He dropped what he was doing and said we would take the dress to the dry cleaners to see if they could alter it and we would go to the department store on Wednesday for a back up outfit.  Of course this started my water works, because now I was pulling him away from his work and my brain is not working correctly, so now I know he doesn’t trust me to dress myself correctly, and why can’t I make my brain work well enough that I can drive myself, or put together an outfit that is presentable for a wedding.  How in the hell am I even going to be able to dress myself for work, and all I do for 6 months now is make more work for him, and in a little over two weeks he’s going to have to take me to treatment every damn day.  I am feeling worthless, stupid, fat and completely out of whack.  This of course adds to my water works, and Hubby is frustrated because he is tired and trying to get extra work done today as he was already planning on running certain errands on Wednesday before we met with our friends for appetizers and drinks that evening.  Now he was going to add to the list of errands that needed to be run, which included picking up his new suit for the wedding.  I got my tears of frustration under control and we went to the dry cleaners.

While Hubby waited for me in the parking lot at the dry cleaners while they pinned the dress to mark the alterations that needed to happen, he decided he was just too tired to go to Support Group.  When I got back out to the car after taking care of getting my dress sized correctly, he told me of his decision.  Since I still cannot drive myself yet, this news just took the last of the wind out of my sails.  I asked him if I could Uber it to group and he said he was not comfortable with me taking Uber as he doesn’t want anyone taking advantage of me with my brain still limiting my ability to think at normal speed and comprehension.  I know he only wants what is best for me but this just didn’t help my feel any better about myself.  And there went the tears yet again.  I got myself back under control and texted my friend from group that I would not be there that night so she wouldn’t worry.  She texted me back and insisted she and her mom could come pick me up and take me to group.  I told her I didn’t want them to go out of their way.  I knew she had just had her chemo infusion a few days earlier and she doesn’t drive that first week after her infusion. She is very tired for that first week.  She and her mom insisted so I told Hubby I had a ride.

This frustrated him even more, as I am sure he thought I had bad mouthed him and begged for a ride, which is not something I would do.  I know how tired he was, I know he was not sleeping well, and I honestly did not text her to get a ride out of it.  I know how she is; she would have been worried that there was something seriously wrong with me as this was not a pre-scheduled absence from group.   The next thing I knew he was out mowing the lawn as he didn’t want either of them to see the house with the lawn a little shaggy…  So even me trying to stay out of his way and let him do what he needs to do was causing him more work.  Screwed that one up too… and yup, more tears.  WTF!  I cannot get away from falling apart every few days.   I hate my body, I hate my boobs, and I hate my f’ing life right now.  Nothing works correctly anymore.  My feet hurt if I stand or walk too much, my fingers hurt all the time, it’s not like I can’t go hours without using them…  my nails look like shit from the chemo.  I feel like my body is no longer in proportion.  Even though I am fat at least I was in proportion fat, my chest matched my waist, matched my butt.  That is no longer the case.

I went to group and felt too stupid and insecure to even talk about how I really felt about my body, about my brain, about me in general.  I have not had a problem with my body image before.  It feels so stupid and vain to be this upset over how I look right now, how I now feel about my body.  Fat, ugly and completely out of proportion.  I do talk about how I do know how much my husband loves me, all the things he does for me, and how he is concerned for my safety, and is taking me shopping the next day to get a back up outfit just in case the dress doesn’t work out.

Wednesday we went shopping for that back up wedding outfit.  We started at our local mall with Macy’s and did not see anything right off the bat that caught either of our eyes.  We decided to head over to Nordstrom.  We started out in the wrong department – dresses, as we had decided a pants outfit would be the back up to the dress already purchased.  We were directed to the correct location in the store that we wanted and started browsing.  The sales lady started helping us after we found one pair of slacks to try on.  When we told her what we were looking for she started looking for items to bring to us in the dressing room.

Even putting on the separates in the dressing room and looking at myself in the mirror I could not tell if they looked good together.  What is wrong with me?  Why can’t I look in the mirror and say “Yes, I like this”?  And here come the tears again…  Hubby had to tell me to stop and breathe a few times while I tried on several slacks and blouses.  They had one pair of slacks that fit well, but they were crop pants.  I don’t feel comfortable in crop pants to begin with; knowing I was wearing thick soled tennis shoes was not something I wanted to draw attention too.  But they were the only pants they had in my size.  I did find a jacket I liked, but they didn’t have it in my size.  The sales lady did find the jacket in my size at the store in Costa Mesa.  Were we willing to go there to get the jacket?  Yes.  We purchased the crop pants and a light blue sleeveless blouse I liked but didn’t like.  It was the sleeveless part.  I’ve never been self-conscience about scars before, but the scar in my right armpit was making me self-conscience.  Why am I having so many issues with this?

We went to the store where Hubby purchased his suit, picked it up and then headed to Nordstrom in Costa Mesa.  We checked into the women’s department where the jacket was being held, and there the sales lady helped us find pants from the same label that were longer that fit me.  She also helped us find a blouse I liked much better than the light blue one we found at the first store.  I felt like a waiter.  Black pants, white button down long sleeve shirt…  Yes I know we were topping it with a jacket, but it’s also black.  I’ve always had a problem with button up shirts gaping at the bust line.  Even with my new smaller breasts I still have this problem, but it’s not as bad now.   I can tell Hubby likes this outfit and Nordstrom is willing to hem the pants in one hour.  I like each separate piece, so yeah, I guess they go together.  We purchase the pieces and go get some food while we wait for the pants to be hemmed.

I don’t tell Hubby how I feel right now.  How I have been feeling.  How I hate my body.  How I hate everything I put on my body right now.  How I feel fat, ugly, fat, out of proportion, fat.  I can’t even get my wedding rings back on comfortably.  I think that hurts the most right now.  I can’t wear my wedding rings.  I can’t think outside the box, I can’t walk for long still, my fingers hurt, my boob hurts, and I hate my boobs.  I hate my body.  I still have to do radiation.  My boob still leaks.

We get back home just in time to change the shirt I spilled on real quick and head up to the restaurant we’re all meeting at.  I paste on another smile and I am going to fake it until I feel better.

We have a wonderful time with our friends, talk the night away and before we know it over two and a half hours have gone by in a blink.

Saturday arrives all too quickly and we finally start to get ready for the wedding.  I try the dress first.  The hem has not been altered correctly, there is a “low” spot in the front, and I will trip on this.  I have to go to the backup outfit.  Not that either of them helps me feel any better about my self image.  As I get dressed I feel like a waiter again.  I take a Toradal hoping this will help me with the neuropathy in my feet.  When I was taking it after my surgeries both my hands and feet felt better.   They didn’t bother me nearly as much.  Hubby looks good in his new suit.  His shirt and tie are a nice touch to the dark grey suit.  I put on a little make-up, packed up a small purse and away we went.

The Darling Daughter texts while we’re driving to the chapel, asks how I am doing.  I tell her I feel like a waiter in my outfit.  How Hubby keeps asking me if I like what I am wearing.  I keep telling him it’s fine, I like it.  I don’t want to hurt his feelings by telling him how I really feel.  He picked out the outfit.  I’m glad I had a back up outfit since the dress was a no go.  I tell her I forgot to trim all the fuzzies that grow on my face and how that is just adding to the general hate of my body right now.  I told her if it wasn’t the son from another mother wedding I wouldn’t go.  Told her I was going to put a smile on my face and fake it until I can really be happy to be there.  Every time I think I’ve got all this under control I feel another breakdown coming.

At the wedding we had a wonderful time connecting with the kids and the other parents.  The groom’s older sister is getting married at the end of September up in Washington State where she lives with her fiancé and their 6 month old son.  She was all over us that we had to be there for her wedding.  Her fiancé told her she should not try to pressure us so much to be at their wedding.  She told him she could do this with us as we’re auxiliary parents.  I loved it.  Every sweet moment.  I got to hold the sleeping baby so she could go dance with her fiancé.  The Father of the Groom’s cousin and I had a wonderful conversation while we waited for the Bride and Groom to arrive at the reception location.  Later in the evening she came over to me and told me to hold out my wrist.  She placed a beautiful Breast Cancer Awareness bracelet on my wrist.  I wanted to cry with gratitude.  I love that family and I am so glad our children are still friends all these years later.  I am glad we’re all still friends all these years later.  As we were saying our goodbyes the Father of the Groom even rubbed my head.  I love all these people so much and I am so grateful for all of them in my life.

The Darling Daughter checked back in with me on Sunday.  She wanted to take me to the beach after she got off work before we had dinner.  I told her I was doing OK.  I told her I did have a great time at the wedding Pretending to be happy actually helps you become happy.  Adding gratitude on top boosts the response.  I know how to fix myself; I just hate that have to fix myself.  It’s OK to have bad moments.  It helps me to look at what is at the center of it and deal with each emotion as it happens.  I just wish I would get to the end of all this sooner.  I wish I would stop having breakdowns.

Darling Daughter did get off in time for us to head to the beach for a little nature nurture before we had dinner.

Today I decided it was time to make the walk up to Starbucks again.  I need to do something about my body image.  I was starting to exercise again before this all nightmare started; I was no longer comfortable in my body.  I still loved myself, but I was not comfortable anymore.

Exercise has always been a problem for me.  I was not taught to take care of my body with exercise.  Anytime I expressed an interest in some sort of sport or dance I was discouraged.  Ballet would deform my feet, girls don’t play organized sports, and gymnastics would deform my body.  Why would I want to do that to myself?  By the time I was in middle school I had pretty much given up on any support for any kind of extracurricular activity.  I had a friend that convinced me to try out for cross county track.  I kept telling her there was no way my parents, my mom, would let me do this.  I tried out anyway.  When the coach told us we needed to invest in good running shoes I knew that would be my downfall.  I tried floating the idea by my mom, and the first things said were that good shoes would be too much money, need to pay for your brothers’ baseball stuff, etc.  I knew then there would be no support for me.  I always found it ironic that the things my mother complained about how her parents treated her, was how she treated me.  I have dealt with all the other traumas this caused me growing up, forgiven my parents, forgiven myself, grown up, learned my triggers and learned how to silence them, not be hurt my them anymore, how to deal with my hurts and not let them make me react.  But exercise is still my downfall, the one area I still have problems dealing with consistently.

I fall in and out of exercise, I do it for a while, and then I get bored with it and stop.  I have failed time after time to make exercise a lifelong habit.  I want to make it work this time, make it stick.  I want to be comfortable in my body again.  Even at my heaviest I did not hate my body.  I still had a good self image.   Now I hate my body, I feel betrayed by my body.  I hate what has become of my breasts.  They don’t even look normal, or real.  To me they look like a hack artist molded them and plopped them on my body.  Even Picasso “boobs” look more like normal boobs than mine do right now.  I know I have to wait more months before I can decide if I like them.  I know this in my brain, but my heart, my soul, they hate them.  I want to do more exercise.  I can’t submerge myself yet due to the damn leaky boob, and my feet are so uncomfortable it makes it very difficult to even contemplate walking or doing yoga.  Sitting has become painful, but when I stand to try and stretch, that hurts.  I’ve tried just stretching while sitting or laying down, but that is not enough to relieve the aches that start to set in from sitting too long.  The months of this seem to stretch on forever.  I know it will end eventually.  I will get the real me back, but right now that just seems too far away sometimes.

My leaky boob seems to be healing.  It doesn’t take nearly as much gauze to fill it and the amount of fluid coming out is not as much.  The consistency of the fluid has changed as well.  Now when I lay down we can see the outline of the hard lumpy scar tissue we feel building up where the cavities used to be.  So now not only do I have unnaturally shaped breasts but the right one now has visible lumps.  The good news is, according to Dr. Endicott, radiation will soften all the scar tissue in the right breast.  So, hoping all those big hard lumps will go away here in a few weeks.

My cousin is coming down to visit this weekend.  I need to her to hug me and tell me it will be OK.  I need her to look at my boobs and tell me they will look normal someday.  We have a field trip planned.  I need this so much!  I know how to fix myself, and I know it takes time to fix what ails me, and sometimes it makes me tired just thinking about it.  I hate that I have to fix myself.  I hate that I am struggling with my own self image for the first time in my life.  There was a time in my life when my emotional health was so low I didn’t think I could live anymore.  Even then my image of my physical self was strong.  I just didn’t think I had the emotional strength to go on.  Now I know I have the emotional strength to do this, but I wonder how long dealing with all this shit will actually take, and why now does having a negative body image have to rear its ugly head?  Why now do I not only know I need to deal with my weight, but feel FAT?  Why now is it so hard for me to like anything I wear?  Why now is it so hard to deal with the deficiencies of my current brain?  Why does it have to be so hard NOW?

I have all the tools; I know how to do it.  I can do this.

I know I have so many who love me, who are praying for me, thinking of me, sending me good thoughts.  Knowing I have this big cheering section helps me so much.  Knowing I have a job I really do love to go back to when this is all over helps me so much.  Knowing I have the tools to deal with all this helps me so much.  Knowing all of this, keeping all this close to my heart, helps me so much.

Life is having the tools and knowing how to use them