Month: April 2018

Today was the first meeting with Dr. Endicott. She is tall, soft spoken, and I can tell like me, a visual learner. I know this because she has classic signs of being a “visual” person, looks up and to the right a lot, especially when she is talking or trying to recall information. I felt right at home with her.

I met her nurse first, and she reviewed my new patient information with me, along with my med list. We discussed the timing of my chemo, surgeries, and the fact that I have a hole in my boob that continues to leak. She told us Dr. Endicott would come in and speak with us first, and then I would need to disrobe from the waist up and put on a gown so she could examine me. After that I would be able to dress again, and she would come back in and go over more information with us. She noted on my medical history form I had written down “Chemo Brain” so she brought us a flier for a 2 hour seminar under the Cancer Survivors workshops for dealing with Chemo Brain. This group is very observant!

Dr. Endicott came in and reviewed my medical files, and confirmed that my mom was just diagnosed with breast cancer. She asked what kind of cancer, was it the same as mine? No, hers has been caught earlier, smaller, and is hormone receptor positive. She’s looking at lumpectomy and radiation at this point. Good, good. She then got very excited that I’d had such a great response to chemo, in her words, this has taken me from being on the “very concerned and watch very closely list” to “the looking better list”. She asked about genetic testing, and yes I have tested negative for all BRCA genes at this point. I had a panel of 37 genes tested; we’re currently awaiting the results of Mom’s 80 gene panel they are running.

Dr. Endicott then stated that they prefer to do radiation when there is the least amount of cancer cells left in the breast. She also stated she prefers to start radiation between 6 to 8 weeks from surgery. She is willing to push this a little longer to allow my breast to heal a little more since I had such a great pathology report with all margins at least 1 CM away from the tumor marker. She is not too worried about cancer cells continuing to grow while we make sure my breast heals up, but she still would rather start this sooner rather than later.

She also stated that by doing radiation therapy I reduce my chances for recurrence by another 1/3. Pretty compelling reason to agree to radiation therapy. With a 35% recurrence rate for triple negative cancer vs. 4.7% recurrence rates for the other types of breast cancer, I’ll take the 1/3 reduction in my recurrence rate. Another little tidbit I found out today is approximately 15% of breast cancers are triple negative, and they are almost always found between mammograms as they are so aggressive. Didn’t know that… Now I don’t feel so stupid for not finding Blink sooner. I didn’t have a chance of finding this at such a smaller size or earlier stage like my mom’s cancer.

Not sure how I feel about these new pieces of information I have received today. My dragon is trying to unfurl, but I keep reminding him that there is nothing to worry about. The odds are still in my favor. We beat cancer, and it’s going to stay beat. Just because Dr. Endicott let it slip how scary this really was, how worried all my doctors were to get me into treatment so quickly, and all that I have endured to this point, was because my life was at stake. This is sinking in again. I had a complete pathological response to chemo, which reduces my recurrence risk. Radiation therapy is going to reduce my recurrence risk even more.  I’m going to be just fine, so little dragon you can just curl back up into your designated corner. I’m going to be fine.

We talked about my Thyroidectomy, and subsequent ablation with the radioactive isotope. How I was really sick from the radioactive isotope, and my Radiation Oncologist at that time said I was highly susceptible to radiation sickness. I have been a bit worried about external radiation therapy making me sick as well. She doesn’t think I’ll have any problems with nausea, but I can curse her during treatment if it does make me sick. This was said with a slight chuckle in her voice, so she has a sense of humor! She emphasized it is very rare for anyone to feel nauseous from radiation therapy unless they are being treated for stomach cancer or the pituitary gland. Those two locations have a tendency to cause nausea. The rest, not so much. And since my primary radiation location is my right breast, they will be avoiding any possible direct beam to my stomach. If it had been my left breast, she could not guarantee any radiation to my stomach. I liked that she listened and answered as best she could but left the opening there that it was not completely out of the realm of possibility. And she could allow me to blame her if I did get sick. That was so nice to have a doctor take that attitude.

Dr. Endicott left us for a bit so I could undress and slip on the exam gown. When she returned, she examined my breasts. She said it looks so much better than she anticipated, and the left breasts incision sites look less healed than the right one. She was very pleased with how well my breasts are healing. She left the room again, so I could get dressed again.

When she returned to the room again, she advised us she debated whether she should, could let me have a reduced course of radiation therapy. She decided she just could not justify a shorter course of radiation therapy when she reviews my initial diagnosis. She wants to be sure I have the best chances of no recurrence. I will have 6 weeks of radiation therapy. The first 5 weeks will be broad beam across my entire breast surface. The last week will be localized or concentrated radiation to the lower half of my breast where my lump originated. I will notice a slight burn about 2 to 3 weeks into treatment. It may get gradually worse. I may also start to feel fatigue about that time. It is hit or miss as to who feels tired and to what extent. The radiation burn will fade 2 to 3 weeks after radiation therapy ends, and if I experience fatigue, that will also improve about 2 to 3 weeks after the end of therapy.

Then Dr. Endicott showed us some pictures of what radiation mapping is, how they position me, “tattoo” me with marks for radiation therapy. She explained how they do this to find the best angles to beam the radiation through my breast tissue with minimal exposure to other tissues. I may have a problem with a dry cough and/or shortness of breath 3 to 6 months after radiation. I am to call them if this happens, there are things they can do to help with this. I also have a 1/200,000 increased chance of a rib fracture as a couple of my ribs will receive minimal exposure to radiation. Radiation will also probably soften any scar tissue in my right breast. She did confirm that my right breast will probably shrink. We discussed the fact that I still don’t like my breasts, but I’ve been told by my cousin that I cannot decide whether I like them or not for 5 more months. Dr. Endicott said that was wise advice. And that the girls look really good. Still doesn’t make me like them right now….

She then had one of the radiation therapists schedule me for radiation mapping in two weeks and my first therapy treatment the week after. Radiation mapping will take about an hour and a half. There will be scans involved to make sure they are getting the best angles so they miss as much of my lungs and ribs as possible. I will get my new blue tattoos, and Dr. Endicott will show us my scans and the radiation angles that will be used. As long as Dr. Goldberg does not have any major objections we will proceed with treatment the following week. The first radiation treatment will take 30 to 40 minutes as they want to be sure everything is lined up correctly and they have my exposure set correctly. After that daily treatments will take no more than 15 minutes, most likely less.

I have my next follow up with Dr. Goldberg next week. I’ll let her know of Dr. Endicott’s treatment plan and she can then decide if it is a nay or yea as to moving forward.

Life is reducing my recurrence risk

I meditate usually every day, sometimes multiple times a day.  In the mindfulness class one of the things that we were challenged to do was not only the meditation, but also take mindful walks, conversations, eating, and quite time, which is just meditation for the most part.  But I have been working on the mindful eating and conversations.  Today when I walked up to Starbucks, I realized I already do mindful walking.  I pay attention to the sounds, the birds, the squirrels, and the lizards… dogs barking in the neighborhood.  I notice if the trees smell, what different flowers I smell, what is in bloom.  How the sky looks, traffic patterns, how many pine cones have dropped.  Today I just took some pictures along with noticing all these things.

The walk was very nice, and my reward for walking a Venti, Quad, Non-fat Latte with one Splenda.  This time I was able to see one of the other baristas I loved talking with the so many months ago.  He comped me my drink and a croissant.  I sat outside to enjoy the delightful weather.  I had numerous dogs come and greet me good morning.  It was so much fun.  I finally had to say goodbye to the last  “puppy” so I could walk home.

I did wash the cat blanket today as it was starting to look orange from all the fur left behind by the Toothless Wonder cat.  Hubby didn’t even notice that I had taken all the lap blankets and the cat blanket out to wash.  He was so tired from his night.  He went out with a friend last night.  They met up at a hotel his friend was staying at and walked over to an Irish pub to get caught up again.  He wasn’t out very late, home by about 10:30 PM, but he didn’t get to bed until about 1 AM as he went into his office to work for about “an hour” when I headed to bed.  He was still up around 7 AM this morning, and told me that the Toothless Wonder cat had a funny burst of energy this morning and was sprinting through the house.  In the back room, his claws dug into the carpet no problem, but when he would hit the hardwood floors, he was sliding every which way trying to gain traction.  He sprinted through the house about three times before he ended up at the back door and wanted out.

Hubby texted the kids to let them know he wanted pizza for dinner.  Only The Middle Son was coming over for family dinner tonight.  Son-in-law was celebrating his birthday with his family tonight.  And I think there was a baby shower for his little sister this weekend too.

The hole in my boob doesn’t seem to be getting any smaller yet…  still draining and still having to change the gauze in it every day.  This is taking soooooo long.

Tomorrow is my meeting with the Radiation Oncologist.  Dr. Endicott.  One of the gals in my Support Group went to her as well.  She said Dr. Endicott is very nice.  There was a message from Friday from her office, reminding me of the appointment and said they emailed me the new patient packet, I needed to fill out the questionnaire and bring it back with me.  Hmmm, never received an email from them.  I will have to call there first thing in the morning to be sure they have my email correct.  They probably spelled my last name incorrectly.  I have a huge note I have left by my spot on the sofa to remind me to call first thing in the morning.

Dinner with The Middle Son was nice.  Just the three of us, and I did agree to hem the Girlfriends pants she picked out for the wedding.  It felt good to be able to hem the pants and do it so quickly.  He did leave a little earlier than normal as the Girlfriends niece was asking when he was coming back to the house where she was being babysat by her auntie and grandparents.   We told him to go, we’d visited, had a nice chat, eaten pizza and I had hemmed the pants.   We will see him next Saturday night at the wedding, where he is co-best man at the best man for his best friend.  I can hardly wait for the wedding.  And my shoes should be here any day!  Black Velvet tennis shoes!

Life is remembering to be Mindful

 

So I miss-typed the size of the “hole” inside my boob, it’s 6 cm deep from the 3 o’clock position and 3.5 cm from the 12 o’clock position. Oops, big difference between millimeters and centimeters. Now that I have that out of the way, we went to our Support Groups Tuesday night, and I signed up for an 8 week course on Mindfulness being offered at the Cancer Support Community with one of my friends from my Support Group.

Camilla came back on Wednesday morning and changed out the packing. I still leak, but she used gauze and a Telfapad with some special tape and it didn’t leak out through all that onto my bra. I have had issues with some tapes; some first aid tapes leave me very red and itchy. She used an alcohol wipe to soften the adhesive on the tape before she started to pull off the outer dressing. It didn’t help much. She said this tape was gentle and would not be hard on my skin. It was anything but. It stuck so bad even she was having a hard time not pulling my skin off… it left me with some nice irritated areas. Once she got that off, she pulled out a zillion miles of tape from my boob, flushed it with sterile saline solution, and agreed to try the tape I buy for myself – 3M Nextcare tape for sensitive skin. She liked it and took some pictures of it so she could try and add that to her kit. She re-stuffed my boob, and using my tape she applied the outer dressing, and told us that all the supplies she ordered for us should be here any day. She left us with some of her supplies to get us through.

After she left I used some of the waterproof tape we have and a cut up plastic bag to create waterproof barrier so I could shower. I was not very sure of the leak proofness of the temporary cover over my dressing. I showered quickly, moisturized, dried off, got my armor bra back on, and away I went with my day. We had grocery shopping that needed to get done. While we were in line to checkout at Albertson’s one of the cashiers on break came up to me and asked me about my port. She had seen my scar healing near my collarbone. Told her mine was just taken out a few weeks ago, I didn’t need it anymore. This led her to ask me how my doctor knew it was time to have it removed. Told her that was actually my decision as I know there are no additional therapies for me that will happen intravenously. If there were I would not have asked the surgeon to remove it. She told me her last chemo was last June, but they do take blood samples through her port and she does get it flushed once a month. She has horrible veins, so it’s easier to get her blood samples through the port. I told her that could be why her doctor has kept her port in all this time. Rather than have to poke her numerous times trying to get blood samples so they can track her tumor markers, it’s just easier to keep her port in place. She liked that answer. I understand it can be very scary for a cancer patient who feels like they are on the road to recovery have a nagging question as to why their port has not been removed. Does the doctor know something they are not sharing….?

Grocery shopping finished we went on with our day as normal. I thought I kept feeling a wet spot on my shirt, but I just couldn’t pinpoint where it was. I even went to the bedroom and lifted my shirt to see if there was a wet spot on my bra from my boob leaking… couldn’t find anything.

Went to bed and woke up yesterday morning with a nice wet spot on my night gown. Seems Camilla didn’t tape my outer dressing as effectively as she did with the other tape that tried to pull my skin off and left me with some great red marks.

Hubby said screw that; let’s go back to using the Poise pads! Works for me. But now we have tons of gauze and Telfapads being shipped to us thanks to Camilla. I may be able to open a pharmacy by the time I’m done with all this. Hubby filled the cavity in my boob with the gauze strip, I positioned a new Poise Pad in my bra and on we went with our day. Thursday was also the first day of the 8 week course on Mindfulness that Linda and I signed up to attend. Hubby drove me over and said he would be taking a nap in the car while I attended the first session.

The presenter of our class is a doctor who also has dealt with Cancer. She had a Stage III Sarcoma in her leg. From what we have learned about all the different cancers, Sarcoma is one that is never cured. You can fight it for years, like a “Whack-A-Mole” game. It pops up here, you cut it out, you treat it with chemo, maybe some radiation, and it is gone, only to pop up over there months or years later. Eventually you lose the Whack-a-Mole game. Hubby has a few family members in his group dealing with/lost to Sarcoma. She is very forthright in her presentation. She told us her history; she uses herself and her life previous to her Sarcoma diagnosis, and told us how and why she got into Mindfulness even as she continues to practice as a premier Vitreoretinal Surgeon.

My friend Linda from group was there, and she brought her friend Susan with her. There were a couple others from our support group, along with many others dealing with cancer or family members of those dealing with cancer. It was a great first session. I look forward to our next one next Thursday. I am hoping with some additional coaching in Mindfulness I can gain some better control of my parasympathetic nervous system. I’m tired of my BP dropping, going ashen and clammy and then having to lay down until my BP finally goes back to normal at the most inopportune times. Linda and Susan asked me to join them for lunch, but I couldn’t as Hubby was waiting for me and we had some other errands to run. Maybe next time!

Hubby and I headed to Costco to pick up the last of the items we needed there after we went grocery shopping earlier this week. Then Hubby wanted Del Taco tacos, so we made a stop there too. At one point he looked over at me and said “You look tired.” I was feeling fine so not sure what prompted the tired look. But by 8 PM I was exhausted and ready to go to bed. I hit the sack extra early, woke sometime around 9:30 PM to go to the bathroom and the next thing I knew it was 11:30 AM today. Hubby even said he came in to check on me about 9 AM, wanted to make sure I was still breathing. Guess I was tired after all…

I feel fine now. A little tired still, not sure how I can still feel a little tired after sleeping 15 hours. We received all the medical supplies Camilla ordered for us, so we figured

that meant it was perfect timing to change my stuffing. Hubby pulled out the last gauze and he was looking at the hole and said if he said anything into it, the hole would talk back.  Cracks me up!!! An echo out of my boob. The gauze strip that was shipped to us is 1″ wide, not the 1/4″ wide we’ve been using. Hubby decided we would try it and see how it goes. Today I have 1″ wide gauze in there…

 

 

I cleaned out my emails, had a great email conversation with someone I know from an Industry Organization I was president of, and then called my mom to find out how her remaining appointments this week went. She met with her Radiation Oncologist who understands her desire to have her lumpectomy and her reduction before she has her radiation therapy. She doesn’t want to have to wait 6 months after radiation for her reduction. RO is a little worried about delaying the therapy since that is her only therapy at this point to stop the cancer. She met her Oncologist and they discussed what hormone therapy they will use for her hormone receptive cancer. She also walked mom through the breast tissue and fatty tissue, the ducts and lobes, and what in situ vs. invasive means. She had diagrams which mom really liked. She also met with her plastic surgeon who was wonderful and walked her through everything that would happen including the drawing of all the purple lines on her to show where everything would be placed after surgery. She is looking forward toward the reduction part. She has wanted a breast reduction since her teens. I am so happy for her that she gets the reduction she has always wanted. She doesn’t have a support group there like I have here. I have decided to try and be her support group vicariously. I can relay what those in my support group have gone through, and ask her the questions that our group leaders ask us.

Her breast navigator asked her how she was doing. She is doing well, she has a plan, her surgeon is the driver, but she’s providing the directions. She is very positive that this will really be just a little bump in her road. She was wondering if there was something wrong with her. I told her nope, it’s all her journey and there is nothing wrong with her. Its ok for it to feel and be easy. There have been a few women in our group who felt the same way, but support group is beyond cancer, it’s about getting through life with support while you are dealing with cancer. Breast Cancer is not just one kind of cancer and everyone has the same treatment. Some cancers are easier to deal with than mine. Some are worse – I have a gal with metastatic breast cancer, she takes an oral chemo drug to hopefully control any further spreading of her cancer. And just because mom happens to have a cancer that may be easier to deal with and is getting her something she has wanted longer than I have been alive, doesn’t mean she couldn’t use the help of a support group. When you are dealing with cancer, whether it’s easy of not, life can send you curve balls, or just be life and sometimes that can overwhelm you just a little bit. Support group, friends, family, being there can help you through that. Support group is a group of friends that happen to be experiencing some of the same things you are on top of dealing with life. So I will be the support group when I can. Or at least until I am too tired from my own journey….

 

 

 

 

 

Life is sharing the journey

Camilla is our Home Health Nurse.  She is sweet, patient, understanding and kind.  We had paperwork that had to be filled out and signed.  I had the co-pay still to deal with so Camilla called the office and we provided my debit card to cover the co-pay(s).  We went over my medical history, who my doctors are, who I see next (my new Radiation Oncologist), do I have another appointment currently scheduled with my PCP, no, but I can get one if I need one.  Do I need one?  Camilla told me I didn’t need an appointment.  She asked me about my “wound” as that is what she has been dispatched to do – wound care.  I explained about my two surgeries, the seroma, the drain tube, removal of drain tube, leaking of the boob and discovery of continuing seroma after second surgery, boob farts and here we are now.

Camilla specializes in wound care and was surprised at how little packing “tape” we have been using.  Told her we just copied the amount Hubby pulled out that Dr. Goldberg had placed in my “hole”.  She advised the wound should be packed with the tape and I would not need to stuff my bra with a Poise pad to absorb the draining fluid.  We set up in the bedroom like Hubby and I do, and she removed the previous tape, and using sterile saline solution cleansed the area.  She took a picture of the hole.  I forgot to ask her for a picture of it!  She explored my wound with a sterile swab and measured the open spaces, 6 mm from the 3 o’clock position and 3.5 mm from the 12 o’clock position and that is the extent of the unhealed area inside my boob, and the area that Camilla will now fill with the packing strip.  It felt weird when Camilla was exploring inside my boob with the cotton swab, but nothing hurt.  She quickly and deftly stuffed the packing strip into my boob and applied a gauze dressing over my now evidently properly stuffed right boob.  She will be back tomorrow morning about 8:30 am and we will see how her changes in my packing strip affect the output of serous fluid from my boob.

She is also going to get us all the supplies we really need to get this done her way to make sure my boob heals up quickly.  All covered by insurance rather than having to try and track all this down and pay out of pocket.  When I asked her about showering she suggested I use Tegaderm over the wound.  I then showed her my still red area on my chest from the last Tegaderm bandage I had.  And yes, that redness is still there from the first surgery on 3/16.   We decided I would try is once, and remove the Tegaderm ASAP so I don’t have a problem with a reaction.

It took a little longer to get all this accomplished than we had anticipated.  But Camilla left and we jumped in the car to get Hubby over to his dental appointment.  We made it just in time!  We’ve had the same dentist for over 20 years.  Our kids have all grown up, and we’ve all grown older together.  Our dentist was horrified when I called his office last September requesting an emergency cleaning.  He was so happy today to see me come in with Hubby.  He came out from the patient he was working on just to come and talk with me.  Because he is that kind of dentist. He cares about us.  He loved my new hair growing and was quick to tease Hubby that I do have more hair than him now.  I did tell him it was not so long ago that I had NO hair.  We talked about how I have a great shaped head to totally rocked the completely bald look.

After Hubby was done with his cleaning, we headed over to get some Togo’s for lunch to find it was closed down.  Not closed as in not open yet, closed down, the restaurant was gone.  Well darn!  Instead we headed to a diner across the street and we both ordered “breakfast”.  After we ate breakfast for lunch, we went to the men’s suit store nearby and went to work on finding Hubby a new suit and shoes.  He loves his old dress shoes, he really does, they are so him, they just hurt his feet too much for him to wear them anymore.  It’s the soles.  He has bad feet and needs extra cushion and soft soles to keep his feet comfortable.  I understand completely now with the neuropathy that plagues me.  I ordered black velvet tennis shoes to wear with my black dress and floral wrap to the wedding.  He found a decent pair of dress shoes with a rubber sole and heel instead of the leather solesand heels like his current dress shoes.  I really wish they made a really fashionable men’s dress shoe with the thicker rubber soles for men like my Hubby who need that extra cushion.

Getting excited about the upcoming wedding.

Life is finding comfortable shoes

Yesterday morning while Hubby was changing my packing strip, we discovered my boob now can take in air and when Hubby was pushing on the key spots to get the serous fluid out, instead my boob farted… in his face. OMG we laughed so hard! I told him “my boob just farted in his general direction”!

Brunch went well, and we had a wonderful time with our friends. We are even talking about going out one of these Wednesday nights to another restaurant central to us that has a great happy hour with wonderful food. We will definitely be doing this in the near future! Plus I’ve always wanted to go to the restaurant in our discussion.

Kids came over for dinner and we celebrated Hubby’s birthday. We ordered Chinese food for dinner and the Darling Daughter brought the Lemon Cream Cheese Pie for dessert. We had a wonderful dinner and conversation. Even had a great conversation with the Grandson about my cancer and my surgeries. Of course he heard us talking about the “boob fart” and immediately piped up that he wanted to see my boob fart. Well, since you can’t actually see a fart, I was able to get off on a technicality  instead of having to show my grandson my boob! This did have some of us laughing again, but the Darling Daughter was the only one who was turning green over this entire “hole draining boob” thing. Wow, she’s the one who has to help with procedures on animals at the Vet Hospital where she works, but just talking about my “boob hole” had her ready to run for the toilet. Now that was funny!

We were both so exhausted by the time we went to bed we decided to forgo the changing of the dressing on my boob.  It’s not like it has not gone 24 hours without being changed before.  It was fine this morning, drained some on the Poise pad overnight, with very little drainage this morning.  More air, but we’re assuming that means everything is on track. I did hear from the Home Health Nurse this morning, she is going to come out tomorrow morning to check on how things are going. After that Hubby has a dentist appointment and from there we will grab a bite to eat and we will get him a new suit and shoes for the wedding at the end of the month. I ordered a black dress, a wrap and black velvet tennis shoes as even my new Rothy shoes with the inserts changed out to my really soft gel ones made my feet irritated after an hour. I do believe the wedding and reception will be longer than an hour.

On a side note, I am so very tired of my ribs hurting. The bands from the armor bras is so tight, and needs to be tight, that is feels like it bruises my ribs. That and because these are not really bras, more like vests, really tight vests, it irritates my underarm incision area. Not a lot, just enough to irritate me. And I mean irritate. I am irritated… Not unhappy, just a little frustrated that every time I move it’s irritated enough to annoy me. Irritated.

Today is my Mom’s birthday. Happy Birthday Mom! She met with her geneticist today. Seems there has been more cancer in the family than was ever discussed openly in the past. At least where I was in hearing, and definitely not passed on to me as part of my medical history. My mother’s father’s mother had ovarian cancer when she passed away in her 80’s. Two of my mother’s 1st cousin’s have had breast cancer, one daughter of her father’s brothers, and the other the daughter or her father’s only sister. Her Aunt, (again father’s only sister) had a battle with colon cancer. My two VUS genes (Variance of Unknown Significance) both point to possible links to colon cancer. Ok then. Mom’s geneticist is going to screen for 80 genes not just the 37 I had done. Depending on her results, I may ask for a wider screening done on my panel.

That is my news for the day.

Life is laughing at “boob farts”

 

As I had hoped yesterday, today is a much better day.  Hubby and I were talking about it last night and decided it was all the activity I’d had over the past few days, doing more than I had been up to this point, including carrying my own laundry basket to and from the garage.  I took two more Advil and went to bed.  I slept like a log for the most part.

This morning when I woke up I was not nearly as achy and full of pains I had yesterday.  Hubby was already in the bathroom getting ready to cut his hair, so I gladly lolled in bed relishing my mostly pain free body, and read a little bit until Hubby was done.  It was perfect timing as my bladder was not going to wait much longer.  Hubby was ready to pull my “plug”, but I told him I wanted to brush my teeth first, he could pull my “plug” when I was ready to get into the shower, and then he could re-stuff my boob once I was done.

He was setting up to file our taxes today.  After I was ready to get the packing tape pulled, Hubby was just starting an update of TurboTax.  So I lay on the bed ready to have my boob leak all over the place, with my Poise pad ready to catch all the drippage.  Hubby came in a few moments later and the laughter of just pulling the tape out began.  As like yesterday, there was a lot of fluid.  We’re getting the hang of getting my boob to drain more, we push on strategic spots and more fluid comes out.  I jumped in the shower and was out pretty quickly.  I did forget to moisturize…  Hubby was ready to start the stuffing.  I did leak a little bit more while I was showering.  Hubby noted as he was stuffing new packing strip into my boob there was very little fluid that came back out this time in the stuffing process.  Noting this, we have decided sitting up and moving around a little bit between the pulling of the tape and re-stuffing of new tape will be the new process going forward.

After I finished my morning routine, I ate some breakfast, did dishes and I made a pot of Ginger Beef Ramen, but I added a few things the recipe didn’t call for.  I added some broccoli and cabbage to the chicken broth base I had made with ginger and lime zest before I added the Ramen noodles.  The Beef was Flank Steak seasoned and seared in a cast iron skillet to medium-rare before sitting and then sliced in half before slicing across the grain into smaller more bite size pieces to be added to the Ramen.  On top of that I added sliced green onions, cilantro, lime juice and soy sauce.  Hubby was not sure he would like this, but it all turned out really good.  He ended up eating three bowls of Ginger Beef Ramen.  Like I would make something that tasted bad.  Wait, I did make a horrible ginormous pot of overly salted chicken stew during chemo…  there is that.  But I had a great excuse.  I had no fricken’ taste buds!  Of course it was over salted.  It was the only way I could taste it.  :/

We’ve started talking about the house remodel again.  More like the house clean up, not necessarily remodel.  It is way past time to clean up this house, and get me an updated kitchen, replace carpeting, fix the hole in the wall and floor from the old floor furnace, things like that.  We’ve talked about the budget and today I think we actually agreed upon our primary budget number, knowing full well there may be overruns as we’re 99.9% positive we need to rewire the house and we’re not counting on that in the main part of the budget we hand off to a designer to start off this process.  This tells me that Hubby is starting to see improvements in my brain as well.  Yea!!!!

All this is boding very well for our first “date” out with others tomorrow morning.  Brunch with friends, and I am beyond excited about this.  Slowly building my stamina back up to speed here.  The radiation therapy looming on the horizon is still bothersome to me as I really don’t want to be taken down again.  Still coming to terms with the fact that I have to do radiation, and it’s only going to be 7 weeks at the most from my understanding.  I know it will make me tired, will probably give me a burn and possibly a rash.  I still don’t know if there is any possibility of this making me feel sick due to my high susceptibility to radiation sickness.  Guess I could peruse the interwebs to see if there is anything written about this.  I am the only one I know so far who got sick from the radioactive isotope I had to take to treat my thyroid cancer.  So, yeah, that is out there hanging over my head.

Today, all in all, has been a nice day, the pain has been under control and I have been feeling well.  I liked that I could have a comprehensive conversation about our “remodel” on the house and I was able to follow along and maintain the conversation for many, many minutes.  I am really, really excited about this!

Life is allowing myself to make plans again

 

Today really has not been a great day. I am very tired today and the waves of pain and the zings in my breasts have been relentless. And my underarm is achy, tight and is also bothering me a lot more than it has in the past few weeks. I am ready to be done with all this achy pains.

I did hear back from Dr. Goldberg’s office this morning about the home health nurse, turns out there will be a $40 co-pay each time the nurse comes out. We decided we could handle the packing of my boob on our own. Hubby got through the first two times on his own and didn’t even poke anything into my boob that shouldn’t be there. That’s always a plus. The second time he changed the packing tape he was much more relaxed about it, even cracking jokes, which is not really a smart strategy when you have to stick stuff into a hole in my boob and then you make me laugh. We had a grand time laughing and having to stop the stuffing process multiple times so I didn’t throw him off his groove of poking cotton gauze with a stick through a hole in my boob. At one point he told me he was only charging me $300 per hour, and that was the friends and family discount. When I told him this morning the cost for a nurse to come in every time to do this, he said he would change his charge to $20 for each time. A bargain! The things my husband does for me.

The other news that Caroline did advise is I can shower, we have to pull the tape out of my boob, I shower, then Hubby can repack the boob with the tape.  I wasn’t up to showering today, but you can bet I will be taking a shower in the morning!

This morning, because it has been a bad day, I huddled on the sofa until I just couldn’t huddle anymore and went back to bed. I slept for another 3 1/2 hours, which meant this morning’s tape changing didn’t happen until the afternoon, and today there was a lot of extra fluid that came out with the tape. It leaked out onto the towel I lay on top of to protect our sheets when we change the tape. Ended up we had to wash the sheets today…. it was a lot of fluid. Even Hubby was surprised at the amount of fluid released on today’s tape change. Wonder what the next one will bring…

With all my aches and pains today I have been a little worried about the meeting with the Radiation Oncologist may have been a little premature. Today I can barely lift my right arm. I just hope tomorrow is a better day. Sunday better be a great day, we have a brunch date with our friends, and the kids are all coming over to celebrate Hubby’s birthday since they couldn’t make it last weekend.

Tomorrow is a new day.

Life is allowing myself to laugh again

Yesterday after I posted, I started feeling little “zings” in my right breast.  This is a good thing.  I assumed that this was signs that nerves are healing.  These little zings continued to increase in intensity until I was jumping and letting out little yelps each time it happened.  I was thinking, “Great, boob drainage and having to go though having my boob “packed” with gauze packing tape every day and NOW my nerves are deciding to grow back?”  Decided I needed to place a call to my cousin to make sure the zings I was feeling really were normal just to ease my mind, and I wanted to tell her about the “packing tape”.

I never saw the jar the packing strip came in, and Dr. Goldberg called it packing tape when she was talking to us and to her nurse.  Even when we ordered it at the medical supply store, Hubby took care of the details while I sat in a chair waiting for the transaction to be completed.  I didn’t know until after the very funny conversation with my cousin that the product is really called packing strip.

I called my cousin; we talked about the zings, and how much fun they are.  As I suspected and knew, it is my nerves regenerating.  Deda did say they do happen at night too.  Great, I can just see me now, startled awake by this giant zing in my right boob, arms flying, bam, hit Hubby upside the head or something.  I swear, I didn’t mean to hit him, he’s not a battered husband, it was a boob zing, really it was!!!  Hubby would say it was payback for having to put packing tape in my boob….  OMG!  My brain was going down all these funny paths.

So then Deda keeps insisting I need to send her pictures of the packing tape in my boob.  Ok, I will, not right now.  Told her about having to “stuff my bra with the Poise pad” to absorb the fluid leaking from my boob, and having to order the packing tape from the medical supply store.  She asked “Why?  Can’t you pick this up at Staples or something?  Or does it have to be some sort of medical grade sterile packing tape?”  That threw me for just a second and that was when I remembered she really is blonde.  She is super smart, but there are moments.  I started laughing, and laughed so hard I could barely talk, tears were streaming.  I had to tell her no, it’s like 1/4″ wide cotton gauze strip that gets shoved into my boob to keep the hole open so my boob can continue to drain.  Oh, we laughed so hard.  She finally said she was imagining 2 1/2″ wide clear plastic tape – packing tape.  Hubby came out of his office wondering why I was laughing so hard.   I explained to him, he looks at me at says, I have a sample of the tape, and I have a picture of the jar!

I took a picture of his sample of the tape, and sent both pictures to Deda, while we were both still laughing, she sent me back a picture that more represented what she was thinking was being applied to my right leaking boob…

Oh, the tears that leaked from my eyes because we laughed so hard.  And again, it was not until I saw the picture that Hubby sent me that I realized this stuff is really called packing strip, not tape.  Deda tried to get me to stop laughing, but just was not happening.

I had also been having an email conversation with my Mom, but finally had to call her as I didn’t even know how I was going to write this down to tell her what had just transpired between Deda and I. We laughed as well; a lot; hysterically, tears and everything. It felt so good to laugh like that again. Deda may not have “blonde” moments very often, but when she does… Packing tape….. Bwaaahahahahahahahaha!!!!

I was also freaking out over what to wear to the “Son from another mother” wedding at the end of the month. I still have neuropathy, so shoes can be an issue, and I still have a hard time thinking out side of the box, so finding something to wear that will not look stupid over my armor bras, but still be fancy enough for an evening spring wedding was freaking me out. Everything I was finding was strapless, or halter style tops, holes in the shoulders… Or I was thinking it was not appropriate for the mother of the best friend to wear to the wedding. Yea, chemo brain. Between my mom and Deda, I think I have a plan on how to find something to wear, despite chemo brain. Mom did make a joke about getting my hair done for the wedding; I’m thinking an up-do!

I don’t think my hair will actually be long enough to even try to spike with gel by the end of the month.  So soft baby fuzz hair will just have to work.  I am sure it will.  But that did lead me to think about my nails…  they still look like crap.  I don’t think I can do anything to make them look any better before the wedding.  I cannot put on acrylic over my nails until they are all grown back in without any lifting off the nail beds.  Not even close to that yet.  They don’t want acrylic to hide any issues with infection or fungus until the nails are completely “healed” from the chemo.

Today was my follow up with my Oncologist – Dr. Sikaria.  First she was very excited about my pathology report.  She said this was so exciting, complete pathological response!  She stated this bodes very well for my long term outlook, and this reduces my chance for recurrence! Which led me to my question of do I still need to do Radiation Therapy?  Yes, I still have to go through that.  I go back to her in September after all my radiation is done and I’m healing up.  I will need to do blood work and have an MRI before my next visit.  She said everything looks good, she even checked out my boob job.  She said it looks good!  So everyone that has seen the healing boobs says they look good.  I’m still not completely sold on them yet, but I’m feeling much better about them.  And I can have a fat graft after radiation to make it all better.

Dr. Sikaria said it’s all cosmetic.  And Hubby chimes in with “we can rebuild them.”   I thought about that statement, it’s all cosmetic.  But it’s not really is it…  It’s my boobs we’re talking about, they were mine at least, and I knew them intimately.  And now they have been taken away from me, at least the breasts I knew have been taken away.  What I have now are new, they are shaped differently than my old boobs, and I know that because of surgery they are numb and eventually I will have feeling back in them, but right now I cannot even feel them other than the underlying aches and pains from the surgery. Yes, physically they are my breasts, but they are more than just cosmetic.  They were a part of me, and now that part of me has been drastically changed and not because I wanted them changed, but because I was compelled to change them because one wanted to kill me.  So yes, to everyone else my complaints are cosmetic, but to me, it’s more than that, it’s my body, and my body has been physically assaulted and changed and now I have to get used to those changes and learn my new boobs.

Dr. Sikaria set up the referral to the Radiation Oncologist, and put a note in my medical file to have my disability extended through radiation.  Then she sent us on our way to scheduling.  While we were waiting for scheduling I met with Kim the Patient Advocate to have her go over the forms for my disability and she input the extension to EDD right then and there electronically.  I gave her a hug because this removed such a weight from my shoulders.

Scheduling set us up with my next follow up on September 13th, and I start the process for Radiation Therapy by meeting with a Radiation Oncologist – Dr. Endicott on Monday 4/23.  Radiation Therapy and my new oncologist are all located at Torrance Memorial Hospital.  Starting Radiation Therapy is a process, and it will be weeks yet before I actually start the radiation part.  First meet the oncologist, then there will be a follow up appointment or two, some molds to be made to hold me in place, then I can start the therapy.  Once I know more, I will share.

Once we left Cancer Care we headed over to the Medical Supply Store to pick up the packing tape so we could change my dressing.   I did call Dr. Goldberg’s office this morning as we never thought to ask how often we needed to change the packing strip in my boob, or if I could shower with this.  Spoke with Caroline and she said she was going to call me to let me know Dr. Goldberg left an order for a home health nurse to start coming tomorrow to take care of the packing tape twice a day.   Still waiting to hear back from Caroline about the showering…

My Little Brother called me this afternoon and we talked for over an hour and a half, getting caught up.  It was nice to have such a long conversation with him.  We talked about everything.  Can hardly wait to see him again.  He said he can see the puffiness starting to go away in my face from the last picture I posted.  Now if it would only start to go away in my fingers too so I could actually get my wedding rings back on it would be great.  I know, I keep wanting more and more stuff right now.  No patience!

Hubby and the Middle Son headed out for some Father/Son bonding at the auto museum, so I’ve had the house to myself this afternoon.  What did I do with my free time, laundry.  Middle Son did notice that my hair is coming in nicely and my cowlick is thriving near the crown of my head.

Hair is coming along just fine. Just need the darn puffiness to go away, the neuropathy to heal, my boobs to be mine again, and my nails to finish growing out so they are all healed. Oh, and my brain to work normally again. Not much I’m asking for…. …I want it all, and I want it now. (Freddie Mercury – Queen).

 

 

Life is slowly creeping back to normal

Yesterday was Hubby’s birthday. We normally spend our birthdays at the Happiest Place on Earth – Disneyland Parks. But this year due to my ongoing issues with neuropathy in my feet (and fingers), we have opted to not renew our Disneyland passes until we know I can go and enjoy my day and walk through the parks again. I kept asking Hubby what he wanted to do on his birthday, he finally decided on a drive down to Huntington Beach along the coast and dinner at our favorite (and dating) restaurant. We would also forgo our weekly Support Group meetings. We have not been to our restaurant since last October, before I lost my hair. The Middle Son called Hubby to wish him Happy Birthday, and when he was told where we were, he was all excited we were using the gift he and his girlfriend gave us for Christmas – a gift certificate to said restaurant. Well, no, Mom actually has forgotten all about Christmas and has no idea what we received as gifts. We have a gift certificate for our restaurant? Evidently we do, so next time we plan date night, we will use our gift certificate. I did check my desk drawer where I keep gift cards and certificates and sure enough, right under the Disney gift card is the gift certificate for our restaurant along with a gift card to our favorite movie theater…

This fun little memory game came right after another one where our friends posted pictures of them eating at a themed restaurant. It looked like so much fun and right up our alley. I told Hubby “we need to go there, look; it’s themed and perfect for us!” Hubby looked at me at said, “Um, yeah, honey, we have that on our “to try” list. We saw an expose about that restaurant on Eye on LA just a couple months ago, but you didn’t have taste buds so we have put it off…” I have no recollection of this either.

Both these lovely episodes of Kim Has No Memory brought to you courtesy of Chemo Brain. I do know we received a bottle of my favorite whiskey from the cousins on Christmas Eve, because 1 – they give us a bottle every year, and 2 – I left it on the kitchen table for MONTHS to stare me in the face. It was just put away when I cleaned up the kitchen table this past Saturday.

I know I am doing a little better on the brain thing; I am up to about 15 pages of comprehension when I read before going to sleep. The only bad thing about this is I went back to reading my travel reading books, easy to follow plots, not real taxing on the thinking part, easy to read, unless you have chemo brain. For a while there I was under 10 pages of comprehended reading before falling asleep. So there is improvement. Still not ready to try a thriller yet, or action/adventure where I really need to keep track of characters, locations, timing… yeah, not quite there yet. So easy reading murder/mystery, romance and such for now.

Today is our 23rd anniversary. We met this day 23 years ago, and this is the day we always celebrate. I was temping, and every time I was called to temp in the office where he worked, it was because he was on vacation. This was a day when two others were on vacation on the same day, so I was asked to work there on a Tuesday and come back again Friday. He was so cute, and flirted outrageously, but the kicker for me was when he sang Tom Jones songs. And here we are 23 years later, still making it work. He’s my foundation when the going gets rough. He’s made me believe in Happily Ever After. He makes me laugh. He picks me up when I am down, and obviously based on the last post, knows how to hold on, hold me up, and keep all my pieces together when I start to fall apart. And he knows the difference between me needing a “toughen up cupcake” vs. the “I can hold you until you are all done trying to fall apart”.

We started our day with a trip to Dr. Goldberg’s office for a check up on the boobs. Monday when I took my shower the steri-strip tape that runs from my right nipple down the incision to the bottom of my boob started curling up at the bottom. As instructed by a previous visit to a doctor, I cut off the curled up part and left the rest. I have noted some lightly bloody/plasma spots on my super sports bras mainly from my right breast, but they were light so I thought nothing of it. This time my breast started dripping. Ok, still have some minor drainage. No big deal. I am sure Dr. Goldberg would not have pulled the drain if the seroma was still bad. I slapped a piece of gauze over the drip area, taped it in place and went on with my day. By Monday afternoon I had a huge wet spot on my bra and my shirt. Ok, maybe I need a little bit bigger piece of gauze, not the tiny one that I used.

Tuesday I had the same issue, dripped through the gauze pad I had applied and again had a nice wet spot on the super sports bra.  Next…

While waiting to be called back into an exam room, ran into Heidi from Support Group. She has not been able to come to support group for a few months now. Husband’s work schedule was changed and they are having babysitting issues. Her hair is coming in nicely, looks so cute, about 1/2 inch or so longer than mine. She also ended her chemo one treatment shy of the planned 12 infusions due to getting really sick similar to what I experienced. She had to have a double mastectomy as well as an oophorectomy as she tested positive for BRCA1/BRCA2 gene mutation which also put her at high risk for ovarian cancer. She, like me, doesn’t like her new boobs, but I am sure for a totally different reason. She also has rib pain from the tight bands of the super sports bras. We commiserated together before I was called back and she was leaving.

I explained about all the dripping to Dr. Goldberg once I was in the exam room and she was pulling off the rest of the remaining steri-strips; told her I think I might still have a little hole under there… she at first says, no, no, it looks good! Then there is the drip, even with me lying back on the exam table. Hubby sees it sliding down my side, and points it out to Dr. Goldberg as she has turned away to look for a suture removal kit. She turns back, and Hubby points out to where another drop is quickly forming. Ok, yeah, there is a little hole there, hiding in the scar tissue that is forming. Maybe you have just a little seroma left. There was a big one created from the lumpectomy and that was why she left a drain in place after my “restructuring” surgery.

She grabbed some gauze and pushed a little bit, and more serous fluid came out. Then she’s calling for her assistant. Asks for a kidney basin. She takes the un-swabbed end of a Q-tip and pokes the hole to make it a little bigger and a little bigger yet. That I felt. Then I felt the serous fluid running down my side into the basin, and she is pushing all over my boob to drain the seroma. It was not a pleasant feeling. Most of the surface of my breasts is still numb, nerves have not regenerated, but under that, closer to my chest wall, there are still functioning nerves and having a boob seroma drained was not a fun experience. She then packed the cavity in my boob with 1/4″ strip “packing tape”. She showed Hubby how to do this so he can change the dressing and stuff my boob with packing tape. She taped an absorbent pad over the hole with an end of the packing tape sticking out. She said it will be OK to keep packing it with the packing tape daily until it stops accumulating fluid. If she had known my body was going to continue to produce so much fluid she would have left the drain in place.  She also suggested I use feminine hygiene pads as they are cheaper than buying sterile dressing pads at the medical supply store. I asked her if Poise pads would be good; I always have those on hand. She laughed and said perfect, they are even better at absorbing fluid than the sanitary pads.

We talked about how my right boob is smaller than my left. She tried to keep it bigger than my left breast as it will shrink from the radiation, but she only had so much breast tissue left to work with, and my left breast is still swollen.  I have not seen my right boob since she drained the seroma and stuffed about 16″ inches of “packing tape” into it, but I am sure it is even smaller now as a good 60 cc’s of fluid (or more) was pushed out. She said her job was to reshape my right breast and bring the left breast as close as possible without jeopardizing my nipple/areola to necrosis. She said she really could not make my left breast any smaller without increasing my chance of losing the nipple and areola. She reminded us they are “sisters” not “twins”. But she also said after radiation, if the size discrepancy is very noticeable, she can do a fat graft, and she said that doing the fat graft would actually help make my skin look better than just leaving it alone, as radiation will change the texture of my skin. So we shall see…. And Hubby now has to play nurse and unpack and pack my boob until I no longer have any fluid collecting in there.

We had to order the “packing tape” at the medical supply store, they don’t carry it in stock, but it should be in first thing in the morning. I have my next follow up with my Oncologist tomorrow morning, so timing would be good.

We decided to walk up to a new take out place in the same strip mall as Starbucks to get lunch today. It’s a quick Sushi/Poke bowl place. Neighbor across the street was out washing one of his cars so of course we had to stop and chat a bit. Came out in the conversation that we celebrated Hubby’s birthday yesterday and we’re celebrating our anniversary today. Neighbor was quick to say he needed to get Hubby’s birthday written down so they have it for future reference. Hubby told him no big deal, and M was quick to say “No, I’m gay; we have a guilt complex about this!” We all laughed as this is something another friend of ours would say, also gay, and his name also starts with an M. Hubby and I continued on our walk and arrived at the Poke place. As we were getting ready to order our food, same neighbor texted us asking if he was remembering correctly that today is our anniversary, and if so, they would like to take us to brunch on Sunday. And we cannot say no to Gay Men, it’s a thing! We laughed so hard. It felt good to laugh. Still hurts a bit, but felt good. We agreed we would love to have brunch with them on Sunday. So we have a date.

I ordered a custom Poke Bowl and Hubby had Beef Teriyaki Bowl and a Spicy Tuna Roll.  The roll came with pickled ginger.  After I at all my lunch I grabbed a piece of the ginger as Hubby never eats the ginger, or very little of it.  It was really tasty and I told him about it.  He took a piece and ate it, with a thoughtful look on his face.  “Yes, this Ginger is tasty, but still prefer Maryann…”  Made me laugh.  Still hurts a bit, but again, so nice to laugh again.

After we ate at the new Poke Bowl place, walked over to Starbucks to get me an iced Latte. One of my favorite Barista’s was working and was so excited to see me. Told her about my taste buds and after my last time in last year they pretty much stopped working and HATED all dairy, tasted absolutely horrible. Now that dairy tastes normal again, I am using Starbucks as my reward for walking up the hill. She loved my hair and even rubbed it. She agrees, baby soft!

This morning I also received an email from SDI (State Disability Insurance), stating I have until April 27 for my medical provider to respond to my continued need for disability. No problem, we are heading to the Oncologists office tomorrow, I can speak to the Patient Advocate while we’re there and review who has to continue my disability paperwork since I still have radiation to go and I have not been released back to work yet. Then in today’s mail I receive a written notice that SDI has paid the last three days that have been authorized and SDI is no longer paying me. What? Wait, I thought I had until 4/27 to get this worked out… WTF?

Will start with my Oncologists office tomorrow. If they are not willing to continue providing the back up for my SDI, because radiation will be handed off to a Radiation Oncologist, then I will go to my Primary Care Physician to take this over until I am done. What a pain in the arse. I want to go back to work, I miss it, go figure, but I would so F things up right now. My brain is in no condition to take on what I was handling before, and I don’t even feel safe driving myself yet. Then there is still radiation which is going to make me so tired. I only know one person so far, in all the people I’ve talked with, who worked through chemo and radiation. She worked almost full time through chemo, but when it came to radiation, she had to cut back to part time, she could not keep it up, she was too tired. We call her Wonder Woman in our Support Group. If A had to cut back to less than 20 hours per week while she was going through radiation, there is no way in hell I will be able to work during radiation.

Life is dealing with red tape (and packing tape)

As I alluded to in yesterday’s post, I did my laundry and some housework.  The housework ended up consisting of me cleaning up the kitchen table; finally throwing away junk that had piled up for weeks and months….  And finally sorting through my yearly files, removed what could be shredded from 2017, filed the stuff that needs to be saved and put those out in the garage for when I have time and energy to actually add them to the storage box and I can remove 2009 files for shredding.  I also set up my folders for 2018 records and got all those sorted into the correct files.

When I took my basket full of laundry out to the laundry room, the last three bras that I wore were still hanging there from drying.  I finally took them down.  Just a little twinge from the dragon when I set them aside in the pile for Goodwill.  I’m not sure what I am going to do with them yet.

The Toothless Wonder Cat followed me in from one of my trips to the laundry room in the garage and tried to help me with sorting through the last 5 months of paperwork that I really didn’t sort, just threw it in the filing drawer.  He sat on envelopes for a while and watched me sort out what needed to be shredded vs. what needed to be saved.  He even tried sitting in my lap for a bit to help me read the slips of papers to be sorted – medical, medical specific for cancer (it’s getting its own file), insurance, investments, auto maintenance, emergency dental cleaning before chemo – hmmm, should that go in the cancer file or just the plain medical file…; bank statements.  He grew bored with all this adulting stuff and went to go lay on the chaise.

Finally finished all the sorting, put the 2018 files in the file drawer, set my bag of shredding aside and decided it was time to get my laundry from the dryer.  Perfect timing, dryer was almost done.  Brought in my clothes, sorted, folded, hung up and as I was putting my underwear into my underwear drawer I was faced with all those bras still there.  I’ve gone from a DDD/E cup to what Dr. Goldberg tells me will be a C cup.  I wonder if I have any bras in there that I might still be able to use in the future…  No, I don’t know why I even thought that.  There is no way any of those bras will fit me again, not without adding a whole lot of extra padding.  Texted the Darling Daughter to see if maybe any of these bras would fit her.  Nope, the bands are too small.  I went and grabbed a bag from the kitchen, and decided to move all the bras and the matching panties out of the drawer.  I filled the bag.  As I filled that bag with all my pretty bras and matching panties, my utility bras with no matching panties, and watched the space in my drawer grow larger and larger, that stupid dragon unfurled and pushed the tears right back out of my eyes again.

I loved wearing the pretty bras.  Hated shopping for them, and was soooo happy when I found an online place that made pretty bras in my size and the cuts I like so I wouldn’t have to go to a store.  They even had an app that would assess my measurements to insure I was getting the correct sizes.   All gone.  Only the utility underpants left in my drawer.  The everyday underpants that I have been wearing for months now that I could not wear my pretty bras, and my all cotton, long female knit boxer underpants for fair.  And the tears just keep coming, silently slipping down my face, then my breath starts to hitch.  Not this again, I don’t want to fall apart over stupid bras.

But that is just what I did.  As I walked out of our bedroom with my iPad in hand (from texting the Darling Daughter), trying to stop the hitching, trying to stop the ever faster leaking tears, out of his office walks Hubby.  He takes one look at me and says, “Oh honey, what’s wrong?”  He thinks because the iPad is in my hand maybe I’ve received some bad news.  Nope, just me, falling apart over my stupid boobs and now having to rid myself of all my pretty bras that will never fit again.  And I have to figure out all over again what size I am, and what cut of bra will work for me, and the hours of shopping, and I hate shopping, and trying and not liking what I am finding, and, and, and …  he’s holding me and I am sobbing.  I can’t hold it in anymore.  Sobbing, giant air gulping, heart wrenching, snot draining, tears all over him, as he just holds me there in the hallway, holding me while I weep all my energy away, sob all my hurt away, sob all my fear away, sob all my anxiety away.  Sob all my loss away.  Sob over what was and will never be again.  Sob over all I’ve had to endure.  Sob over what I still face.  Sob over that I may never be able to joke with my boss again about how I own him because he has a thing about my boobs.  (I know that is soooo not right in this day and age, but we both know it and we both accepted it, and it was funny and it was always just between us.  It was our joke, and now I don’t think I can share that joke without crying ever again…)  Sob over how I feel so helpless.  Sob over wanting my life back.  Sob over why am I crying, and I should be happy, I kicked cancers ass, but I am still crying.  Sob over why am I crying  over my boobs, so many women have to have a complete mastectomy, I still have my real boobs, they are just different now, but I am still crying.

Hubby just holds me tight, for what feels like forever while I sob all of this out.  He tried to ask me what was wrong, but I couldn’t talk, couldn’t enunciate well enough, couldn’t get the air in or out in a coherent fashion so he could make out what I was trying to say.  He just held me tight, rubbed my back and let me continue to sob until I was empty.  As I started gasping for bigger and bigger gulps of air, he started talking to me again.  Soothing me through coming back from all of that outpouring all over his shirt.  Talking me through breathing normally again – take a deep breath in through the nose, now let it out slowly through your mouth.  I finally was able to tell him so he could understand my words what set me off, and some of the whys of what fed the dragon.  He said all of that can be dealt with in time, one step at a time.  Then he looked at me and said “It was just too much wasn’t it?  Just too much at once and you finally had to just let it out.”  Yeah, it was too much, and yes it overwhelmed me, and it all had to come out.

I’m not generally a big sobbing, gut wrenching, barely catch your breath type of crying person.  Tears running, sniffling, blow my nose a few times and I am good.  A few times that tear leaking out of your eyes, just wouldn’t stop after a few minutes, but no giant sobbing.  The heart wrenching wailing, that overtakes you, pulls everything you have from the furthest reaches of your being and pours it out through your breath, through your snot, through your tears, that has only hit me a few times in my life, yesterday being one of them.  The raw, ragged edge hurts, assaults, indignities, innocence lost, fear, longing, hope, pain, uncertainty, doubt, strength, and love all mixed together comes out in a great rush of energy; whirls through your being like a class 5 tornado, wreaking destruction in its path, clearing corners of your soul you haven’t touched in years, pulling it all out to spew forth into the world.  A giant release of so much energy that you can only cry through it, it takes tears and muscle and heart to release this dragon,  This is what I did all over my hubby yesterday, and he being the solid foundation that he has had to be all these months, stood there and let all that whip around him, buffet him, drip all over him and just held on tight so I could release it all.  He held on through all of it, giving me strength to let it all out.  And when it was over he helped me calm my tempest, helped me reign in my dragon, helped me right all that had been toppled in the torrent.  And calmly let me get back to being me.  A little lighter, a little freer, a little better, a little more centered, a little more me.  Ready to face another week, ready to take on more healing, more change.

I decided to ask Deda about when she started shopping for new bras after her reduction so long ago.  She’d already told me I couldn’t decide if I liked my boobs or not until they were 6 months old, I could use her to help me set my next steps so I would feel like I have a plan.  Told her another Saturday, another melt down, cleaned out the underwear drawer and now have no bras other than the super sports bras to deal with post surgical boobs, etc.  When did she start looking for new bras?   She told me it was 3 months before she started looking.  She wore the post surgical super sports bras 24/7 until then.  She also told me to relax, I need time to heal.  Yeah, there is that chemo brain/no patience thing again.  She asked me if I’m still meditating.  Yes, but maybe not enough…  She said I need more (meditating); calm my brain, which also needs to heal.  She reminded me I had a lot of shit put into my body and it takes a lot longer to get it cleaned out than it did to put it in.  She also told me to get out of the house, get a change of scenery; and grocery shopping and doctor appointments don’t count.  Go to the park, or walk around the block.  Get out, meditate outside of the house.

She’s right.  For 6 months I have been a prisoner to chemo, locked in my house, away from crowds so I wouldn’t get sick. Locked in my mind, locked in my cancer.  My immune system is finally normal again, blood test last week showed my CBC (complete blood count) is all back in normal ranges.  My liver has just a little bit more to go.  Three weeks before my liver enzyme count was still elevated, needs to be 32 or under; it was 57.  Last week it was down to 35.  So close!

And I am so tired of just sitting.  I get up to wash, to dress, so make a cup of tea, refill my tea, to make some food, but other than that, I am sitting.  I stretch, and then I sit.  Hubby worries about the neuropathy.  Permanent damage can happen if I am not careful.  So I sit, to stay off my neuropathy inflicted feet.  I can’t take sitting anymore.  I need to move.  Radiation Therapy is coming and I worry about how tired that will make me.  I’m so done with being tired.  I don’t want to be tired anymore.  And I am worried about radiation, I was so sick when I did the ablation of my thyroid.  The Radiation Oncologist said it was because I am highly susceptible to radiation sickness.  I worry that Radiation Therapy will make me feel sick as well as tired.  I want sunshine on my face, I want to hear the birds, see the flutterbyes, smell the flowers, smell the earth renewing itself.  I see it out my window, I want to feel it.

So this morning I decided I was going to get my really cushy walking shoes, add in the extra gel inserts to help provide more cushion, and I was going to walk up to Starbucks.  I know Hubby pays attention when we are out and how my step changes after a short time of walking, and the more walking I do, the worse it gets.  He calls it “club foot walking” because I start dragging my feet more; it becomes an effort to walk comfortably with the neuropathy.  I would walk up to Starbucks, and drink my coffee there with a croissant, read my book for a bit, allow my feet to recover some before I walked back.  I would walk up our street to PV Drive and then walk up PV Drive to Starbucks, so this way I would only have a downhill walk on the way back.  And of all the routes I could take, this is the least amount of hill to walk.

I told Hubby this was my plan.  He was not happy with me.  I know he was afraid for me, afraid I would overexert myself, overtax my feet, and then need a ride.  He’s working hard on his business to try and set things up so when I start radiation he has stuff pre-setup so the trips to radiology and any follow up doctor appointments will not impinge on his work.  Maybe soon I will feel confident enough with my brain to drive again and this will help reduce how much I have had to depend on him, pull him away from his work.  But he tried to tell me I shouldn’t walk up to Starbucks.  I have a hard time making it through grocery shopping before I start clomping and dragging my feet because of the neuropathy.  I told him I needed to do this for me.  He was upset, angry, frustrated because I would not back down and he just knew I would have to call him to come get me, interrupting his plans on what he was working on before he took a nap, as he got to bed really late, and was up early to feed the cat.  I told him I need to get out of the house, he said go sit in the backyard and read!  I countered with I am tired of sitting, all I do is sit.  I am done with sitting.  He again reminded me of my feet and I again outlined my plan to keep from damaging them.

I changed into one of my sports tanks, added some pants and a workout sweat wicking shirt, put on a hat, grabbed my keys, my e-reader, my phone and away I went, slowly trudging my way up the hill of our street and then the hill up to Starbucks.  Traffic was fairly heavy, not one break in cars as I slowly made my way up to Starbucks.  Usually there is a quiet lull between groups of cars when I can listen to the birds, hear them in the bushes that grow on the sides of the houses as I walk by, hear the squirrels chitter up in the branches of the trees.  But not on my walk up to Starbucks today.  I did notice there were a lot of pine cones littering the path I took.  Lots of spring growth on plants, shrubs and trees.

My hats don’t fit very well anymore.  Guess hair does make a difference.  But I have ears that keep them from falling all the way down.  Made it to Starbucks, a little steamy, nose a little drippy because it still does that when I move more than a little bit.  I ordered my Venti, Quad, Non-Fat Latte with 1 Splenda, a butter croissant and a plain yogurt.  Texted Hubby that I had made it to Starbucks safe and sound.

I sat off to the side, near the barista counter where the espresso and blended drinks are served, away from the main sitting area.  Set myself up on a high top, took off my hat, wiped the “glow” from my face, and started with my yogurt before digging into the croissant that I love to dip into my latte before I take a bite.  I felt someone watching me, so I glanced up.  There was a couple at another high top to my left and a slight angle behind me.  I caught them staring.  I smiled, they flustered and tried to hide they had been staring.  Slightly thereafter I had that same feeling again.  Sure enough, there was another couple in the main sitting area staring.  Again, I look up and smile at them, yet another couple flustered and attempting to hide they had been staring.  This continued for at least 15 minutes while I sat there drinking my latte, eating my croissant and perusing Facebook. I finally picked up my trash and my belongings, threw the trash away and went outside.

I got tired of the being watched feeling and embarrassing the two couples who couldn’t keep their eyes off me. It’s the new hair, I know. It’s so soft and alluring. Everyone just wants to touch it I am sure! 😀   I wanted to just say out loud to both couples, it’s just what recovering from chemo looks like, it’s not contagious, and you can ask. Despite what our parents taught us, it is OK to ask someone their story. But be nice about it, not bullish or super nosy. If the person doesn’t want to talk, accept that and walk away. This way your curiosity may be answered and the person you are curious about doesn’t feel like a freak show. I’d much rather have someone ask me, “Did you shave your head to honor someone?” to start the conversation than just have them stare at me, making me feel uncomfortable in a public situation, and in turn not want to make them feel uncomfortable in a public situation by saying something. If we had a conversation I might even invite you to rub the downy softness that is my hair right now if you wanted too. If the person asking was showing interest in what they can do to help those of us dealing with cancer, I might point them in so many directions, places they could volunteer, donate, anything. Anything but have an uncomfortable public experience, for everyone involved.

After I waited a bit longer outside and read my book, sipped my coffee, I decided my feet had enough rest and could make the trip home. This time the traffic pattern on PV was more what I used to experience – nice lulls in groups of cars so I can hear the birds, hear the squirrels and even hear the almost silent scurry of lizards sunning themselves before I rudely come along and wake them. Yes, I am still the lizard queen it seems. Seven adorable little lizards made themselves known to me on my trip home. Their friends all scattered to hide, but these brave little souls stayed out of hiding and watched me as I passed, listened to my  salutations to them and wishes for them to have a wonderful soak in the sun.

I had several butterflies wing by, one yellow, one monarch and a bluish white one I’ve not seen before. I heard the birds calling and several squirrels chittering away in the distance. It was a pleasant walk home. As I neared a neighbor’s house on our street, M was out in his garage and greeted me, so I stopped and we chatted for a while. Our kids grew up together and all remain friends. His oldest son is getting married at the end of this month and I am looking forward to the wedding. His mother (in-law) was also going through a cancer battle. Hers was colon cancer. She had surgery and then chemo. She stopped her chemo two treatments shy of the original plan as well. She just couldn’t take feeling so sick anymore. She is doing very well now. I shared with M that my pathology report came back glowing with positive news. He was so happy for me, and assured me his wife D would be ecstatic as well. Hubby texted while were standing there talking, asking me to let him know when I was heading home. M and I said our farewells and I finished the last few hundred feet home.

I am exhausted from my walk, but glad I did it. Could hardly wait to get out of my shoes and socks and slip on my slippers. They do not set off my neuropathy as much as regular shoes and socks. I think it’s the amount of compression around my foot that causes some of the discomfort.

No kids for dinner tonight. The Middle Son was asked at the last minute to work a double because so many others for the night shift at the restaurant called off; and Darling Daughter is exhausted from work, and the last week with kids off for spring break.

We will all celebrate Hubby’s birthday next weekend.

Life is soaking up the nature around us