Author: KimJHA

Today I had my Advanced Health Care Directive notarized. Christie, who I know through work, was gracious enough to meet me in Gardena at a little Italian Eatery with GREAT coffee; down the street from the Walgreen’s that has a drug take back kiosk. I found Eatalian on Google Maps when we were messaging back and forth on where and when to meet up so she could provide the notary service I needed. I read the reviews and decided this would be a perfect place to meet. Christie arrived with her adorable younger son. I gladly offered him my phone to play games or watch videos as we chatted. I have a grandson; I understand this is BORING for little men.

We kibbitzed for about an hour before we finished up the business at hand. Her little man was growing bored with the games and started to fiddle with the fingerprint ink pad, placing his fingerprints on the napkin. I tasked him with placing a fingerprint on the napkin, then using a pen I provided to draw a picture that included the fingerprint. He handed me the completed picture of stars shooting out of his fingerprint surrounding three hearts. What a love filled picture to give to me.  Children awe me in their capacity to spread love and joy.

Christie also relayed to me that not only has she been reading my blog, but her sisters as well. It has provided them with information and insight into breast cancer. Information they have not had even though two of their aunts have dealt with breast cancer, but the subject had not been discussed. She told me I have provided a great service to her. I am glad this has been helpful to someone. This started out as a way to communicate to the many who were asking for me to keep them up to date on my progress, but I had started to hope somewhere along the line that someone would find this helpful.

I knew about breast cancer, but I didn’t know all I know now, before my own diagnosis. I knew to do self exams, but didn’t know there were different kinds of breast cancer, with different therapy approaches to the each kind. I didn’t know that each type of cancer has its own statistics. Statistics are great for a general population, but not so great when trying to apply to an individual. They do help you make decisions about your treatment plans, but the statistics don’t tell you which side of the statistical scale you will be on. You can only make your choices based on giving yourself that best chance to be on the winning side of the scale.

I cleaned out another section of my closet today. Three more paper bags of clothing I no longer wear to Goodwill on my next trip out and about. Threw away some things that had accumulated in that closet that just didn’t need to be kept. I had noted at last week’s lecture, that I was cleaning out my spaces of clutter, slowly, not overwhelming myself, and found that I had relocated more items on my first try at clearing a space than I had thrown away or designated for donation. The facilitator told us that it was OK to relocate items to more appropriate spaces. That is part of the process. Although, since that first two days of space clearing, I have removed more items overall. Like the chemo drugs when I cleaned out the hall closet – mostly anti-nausea and steroids taken to help my body deal with the killer onslaught of chemicals trickled into it over the months of that phase of treatment. I dropped all those drugs off at the drug take back kiosk today. I felt good, lighter, to have all of them gone.

I also asked the pharmacist there about where to dispose of hypodermic needles. I have some that will not be used and don’t know where to dispose of them. The pharmacist was kind enough to let me know that the Fire Department takes back unused needles. Since needles are not a drug, and I know some people that use them for their own medications (diabetics, etc.), I did reach out to some of those people first to see if they could use them, but none of them needed the size I have that I no longer need.

Robert has been watching World Cup Futbal, which is something he has not done before. He has been up early to watch the morning games, napping or working before the airing of the next game, then back to watch the second game aired, working up to the semi and quarter finals. It is funny to hear him yelling at the TV for a “ball” based game, as this is not something he has ever consistently watched, unless I was watching. The only exception to this has been tennis, and even that he does not watch consistently. I have always been the one who gets drawn into baseball, football or basketball. I wonder if he will start watching league teams now that he has been so enthralled with World Cup.

As I was cleaning out my closet section today, he was yelling at Croatia every time they missed a goal or failed to adequately block a Russian pass or kick. The game ended on a shootout – penalty kick competition, and he was completely stressed out that it went down to the final kick for Croatia. He turned to me and said, “This is stressful!” It never fails to tickle me when he gets caught up in watching a sporting event. He becomes so involved and invested.

I pulled my Affirminator card today, along with a The Universe Has your Back card. Both cards helped me feel like I have this whole “fixing my life” thing, moving from cancer victim to cancer survivor, in the bag.  These cards, along with the lecture series are helping me find my new normal, helping me come to terms with the new boobs (and make a rational decision next year as to whether I want to try and fix them or not), helping me reach my fitness and weight goals. Helping me transition from my current life of cancer fighting to survivor. I did get the release to immerse in water starting in two weeks. Not this coming week, but next week I can start swimming. Which is good, as even though I was able to complete that hike into the canyon on Wednesday, I paid a price for it, my feet hurt, had the walking on rocks feeling through last night. I am still getting the occasional sensation of stepping on a rock even as I sit here and type, but it’s not as bad as it was yesterday after asking my feet to do so much walking over two days.

I continue to log my foods into the Noom app, and seeing my eating habits, I am starting to notice I am making better choices just by being accountable for logging my food. Small steps, moving towards my goal of being better physically, and getting fit. Loading up my arsenal for success!

It has been camping on the sun hot! Our AC didn’t turn off once during the day yesterday and was not able to keep up with the barrage of heat. When we went to bed last night the thermostat read 91F degrees outside. The AC finally kicked off about 10:30 pm. So glad we have AC. One of my neuropathy symptoms are every time I sweat it is accompanied with a burning prickly feeling – like prickly heat.  Basically it hurts to sweat, even a little.  This is a bad trick to play on a woman dealing with chemo/menopause induced hot flashes! Gal in my support group said she is still getting hot flashes from the chemo even though she finished months ago. She said they are starting to slow down in frequency, duration and intensity. She already went through menopause years ago, so having hot flashes start up again was not something she anticipated nor has she relished as a side effect from chemo! And she thinks this is a mean trick to play on a post-menopausal woman; to bring back hot flashes and then keep having them months after chemo ends. She is not happy about this at all!

Next week I will start researching gyms and the Y to see what is most economical and best value for swimming as well as offering other benefits for me.

Life is clearing the clutter

I have been taking the additional 100 mg of Gabapentin for three days now. I have noticed a small difference. It is slight, and my feet and hands still hurt quite a bit, but it is a difference. So much so that I took myself on my “Artist’s Date” this week to a local nature conservatory close to where we live. I have been meaning to go there for months. I had heard about it from one of my favorite baristas. He told me if you go there at dusk you can sometimes see owls heading out for their night of hunting.

The hiking trail through this canyon is not a circle, it requires a trip up and back. There is a 300 ft. elevation change going from the trail head to the final stop at the Elderberry Lookout. I had not planned to hike the entire trail. I had my “No One Fights Alone” water bottle with me, filled with my choice of herbs, a lemon wedge and water. This is my new favorite thing to drink now. Water never tasted so good! I started out on the trail and just kept going. Before I knew it I was at the top, looking out from the final stop on the trail before you hit the bridal path for the horses and their riders to enter the canyon. I made stops along the way at benches provided along the path. I forgot to take a picture from the top, but there was a nice break in the trail about 100 yards back down where I did get a decent picture.

 

Of course I saw many lizards. I got a really good picture of one.  I was also able to get really good pictures of a butterfly as well as a bee collecting pollen .  I took a picture of myself at one of the benches and took some time to listen to the birds, the wind, and a lizard scurrying through the brush.  The further I walked into the canyon the sounds of the modern world slowly faded away and I was left with my thoughts and nature. I think that was why I just kept going. My feet hurt, but I wasn’t limping yet, I wasn’t ready to start hunching over to try and ward off the pain. I did learn that carrying my water bottle really bothered my hands.

By the time I got back to the trail head I was bargaining and pleading with my feet. Please just let me make it to the car, I promise I will soak you in cold water. I will set you on an ice pack. I will even try adding some of the left over CBD oil to some moisturizer to see if that helps you stop hurting so much. I made it back to the car, and just sat for a good 15 minutes with my feet hanging over the edge of the door sill. I made it home, stripped, showered, put on clean clothes, washed all the dirt out of my shoes, made some lunch and then SAT. I did soak my feet in cold water, which seems to help. I didn’t have the energy or the capacity to deal with anymore pain, so didn’t try the CBD oil mixed with moisturizer. I just wanted to sit and never get up again.

I also purchased an Apple Watch. After researching differences between a Fitbit and the Apple Watches, the deciding factors were Fitbit’s come with preloaded programs, which is all you can have on them, and most are not water resistant. Apple Watch 3 is water resistant has all the same features as a Fitbit, plus I can add apps if needed. It’s more money, but at this point it’s worth it. I am loading up my arsenal with as many tools as I can get to help me meet my goals.

Another weapon I have added to my arsenal is joining NOOM. It’s an app that helps you set little step goals on weight loss and exercise. They assign you a goal specialist, a group coach and a support group. I am on day three. I am liking it so far on the 14 day free trial. After that it is a monthly cost. Per the app I can reach my goal by January.

Today, because the pain in my feet had subsided, I decided to try a smaller walk at Madrona Marsh. It was a lot shorter walk, as there are several cut off trails you can take from the perimeter circuit around the wet land conservation area that takes you through the middle of the wet lands and back to the start of the trail head. I saw a family of Canadian Geese, and stopped for them to walk across the trail through the marsh area. There is still a nice pond where the water fowl can swim and eat water bugs, duck weed and some freshwater shrimp that grow there.  I never lost the sounds of the outside world at this sanctuary, it is surrounded on all four sides by busy city streets, but I did hear more birds, their constant calling was a musical balm to my soul.

Yesterday where I walked over 7000 steps, today I have barely broken 3500 steps. The goal is to work up to 10000 steps a day, but with my neuropathy I am not sure I will be able to do that every day. Gabapentin is helpful, but it’s not something my neurologist wants me to use extensively. She had stated if there are going to be days when I want to do something special, I should take extra on that day, but keep my daily dose as low as possible. I am hoping with adding one more 100 mg dose mid-day tomorrow will provide me just enough relief that I can control the pain in my feet for a moderate day of walking and be able to work with my hands without having to stop every 5 minutes.

The Affirminator card I pulled yesterday was Options, and today I had two, one I picked and one that knocked the one I picked off the table as I was cleaning up the rest of the cards after mixing them around the table – Impermanence was the first one and Authenticity was the second.

 

 

 

The next hurdle I face is Radiation Therapy. Ever since G came to support group and showed us her rash I have been terrified of what will happen to me during treatment. And I have that little niggling worry about DNA damage. Radiation damages DNA, and a very healthy body can repair that DNA. But someone with cancer has already had damaged DNA that did not get repaired in the cell replication process. What happens if I damage more DNA? Some people later develop Thyroid cancer after having gone through radiation therapy. I already had Thyroid cancer, and my thyroid removed, so there is that… Did the radioactive isotope I had to take for the Thyroid cancer lead to my breast cancer?

And don’t get me started on the radiation burn I face. G texted me tonight she only has two more treatments to go. She gets to ring the bell on Monday for her last treatment. She is in pain most of the time and is up to 2.5% Hydrocortisone cream. And that is barely controlling the itch that accompanies the burning pain. She is doing everything she can to keep from having her blisters burst or break her skin before Monday. She is using Miaderm, Aquaphor, the hydrocortisone and aloe vera gel. She said the Aquaphor is very greasy and she slaps it on at night to help her get through the night. She also said she suggests getting extra sleep shirts to help deal with all the greasy cream. Evidently she needed a clean one every day. She only had 20 days of treatment. What the heck am I going to do with 30 days or more? I am envisioning my sea turtle, with a crystal in his shell riding the chaise through space, bringing me back to center.

I have not heard back from Dr. Goldberg’s office yet on when I can immerse myself yet. I want to start scheduling when I can start swimming for exercise so I don’t have to worry about how many steps my feet can take in one day. Steps matter at this point. I want to save my steps for what I really want, like cooking, and going on adventures. Worrying about using my steps to be sure I get my 10,000 in every day is not something I want to deal with right now. When my neuropathy goes away, then I can work on 10,000 steps.

Synchronicity – A lovely women who does contract work for the company I work for reached out to me today to let me know she is a Notary, and if I needed something notarized she would be willing to come to me to help me out. I’ve had my Health Care Advanced Directive sitting here waiting for me to remember to get two non-family members to witness the document do I can put it into effect. This wonderful woman who I admire greatly will notarize this for me so I can stop worrying about it.

Life is filling my arsenal

I am still attending the weekly lecture series based on Julia Cameron’s The Artist’s Way. This week we started touching on anger and forgiveness. This was the sole driver for my signing up for this lecture series, how do I deal with the anger, frustration, hurt, rage, hate, ANGER, over what has been done to my breasts. I feel so disassociated from my breasts. They are unreal to me. They are ugly to me, and I am still struggling to deal with this physical manifestation of what cancer has led to be done to me.

The facilitator of our lecture was giving us some examples of what makes us angry and how we can work towards forgiveness. She mentioned she is frustrated with her brother and his lack of help in dealing with their mother who suffers from Alzheimer’s. She said she turned it into an affirmation when she realized how much this was lingering as anger for her: “I choose to love my brother as he is now.” I wrote that down but changed “brother” to “breasts” (and “he” to “they”). As I was writing it, my heart heaved, my lungs froze and my eyes blurred with tears. I refused to cry in the middle of all these people who are dealing with their own cancer survival (or not) ordeals.

We were then handed a page with a list of different sentences regarding forgiveness. We were asked to read through them and then in turn we were to read out which one resonated with each of us the most and why. I read through the list, still trying to reign in my dragon that decided now was the perfect time to start circling in my gut. I triggered on “Anger is like carrying around additional weight that we do not want. It is unnecessary baggage that gets in the way of us experiencing complete joy and happiness in life.” That is what I feel, all the emotion about my breasts are a huge weight around my heart, chaining it up and not allowing joy to pass through. When it came to my turn I could not speak. My throat chakra was no longer a beautiful blue, it was black and my voice was frozen in my hitching breath. My eyes continued to allow tears to slowly leak out and down my cheeks. Our facilitator understood and allowed me a pass along with another in our group who needed a pass for the same reason. Her voice was blocked by lack of air and tears.

I wasn’t wearing my white quartzite necklace. I don’t know if this would have helped me or not. I am wearing it today to be sure I keep good energies around me, and remind myself new beginnings may be scary but they are worth working towards.

After the lecture time was over, I had several women from the group that I know from my support group and other classes I have attended surround me, hug me; infuse me with love and support. Tell me it will eventually be right, even if it means I have to search out a new plastic surgeon. They all know what I am struggling with, and they don’t tell me not to struggle with it, to ignore it, to forget about it, to get over it. They just tell me I will heal eventually. It is OK to keep crying over the loss of my beautiful breasts. And the tears can keep coming until I am done, and someday I will be done with this part of my healing. I told them I sometimes feel so stupid for being so hung up on the physical appearance of my breasts, my husband doesn’t care, so why is it so hard for me to accept them now. I was given permission by this wonderful, loving, wise, and accepting group of women to continue to grieve. They reminded that everyone has something different, and this is my baggage. It’s ok that this is what I am hung up on. It’s ok that I still don’t like my breasts. It’s ok that I am struggling with this issue. I was reassured that they all love me for me, and even though I may not feel it or know it right now, I will get to the point where I will feel it and know it, I will feel beautiful again, I will get to the point where I can look at my breasts and see me, not ugly. I will get to the point where I can feel whole again. And they will be there with me the whole way.

I thank God for my husband, who at the beginning of this whole odyssey insisted I had to join a support group. If he has not insisted I would not have gone to that first meeting. I would not have met some of these beautiful women who uphold me right now. I would not have been introduced to some of the lectures offered for free through Cancer Support Community, where I have met some more women who have traveled near the same roads I am walking now. If he had not insisted, I would not have so much support helping me through this hardest part for me. The anger at what I consider my butchered breasts. And to top off all this boob hatred, I have discovered a third boob. Saggy Saga has a baby boob. It’s a separate “bulge” next to the saggiest part of Saga. Just disgusted…

I did call Dr. Goldberg’s office today to ask when I can submerge again so I know when I can swim, and for copies of my original pre-surgery pictures. I noticed she has not asked for post-surgical pictures. If I decide to have another try at plastic surgery, I will have the pictures of what my breasts used to look like. I can also print off copies of the pictures and have a burning ceremony to help with closure of this whole ugly boob business. I am so ready to be done with crying over these stupid things. Soon, it really needs to be soon that I look in the mirror and no longer cringe and want to cry.

I did go with Heather to the Long Beach Street Faire on Saturday evening. I found an aluminum ring that the artist personalizes for you. I knew I wanted a ring but was not sure what I wanted on the ring. Heather and I decided to sit down for a bit, give my feet a rest and grab a bite and some fluids at the Auld Dubliner. As we were sitting there talking waiting for our fries to come, I realized what I wanted on the ring:

 

 

 

 

 

 

It is perfect.

Friday afternoon Joseph and Heather came over so Joseph (The Grandson) could pick out some beads to go with his feather that he asked me to make into a necklace for him. Before he would pick out the beads he told us he had an important question, could he spend the night. Heather was flabbergasted. She kept coming up with excuses as to why he could not, they hadn’t brought extra clothes with them, he had no PJ’s, and there was no planning… Grandpa and I came up with responses for each of the objections. His clothes were clean, his underwear could be turned inside out so it would be like wearing clean underwear (he loved that one!); he could wear one of my T’s as pajamas. Then she pulled the no toothbrush one, but that didn’t hold water as he has a toothbrush here – Teenage Mutant Ninja Turtle toothbrush. All objections were overridden and Joseph was allowed to spend the night. We had a great time. It’s been over a year since he has spent the night.

Sunday I made Sangria to go with our dinner. Robert (Hubby) requested Tortellini and bread. Of course I had to add some bruschetta and then there was dessert – sweet pecan pie crust hand pushed out to a giant rectangle to create an Italian fruit tart. Heather helped me pit cherries and we placed halved cherries and quartered strawberries on the pie crust, added a simple balsamic glaze, some fresh rosemary and thyme, some salt and pepper and baked. Robert was not happy with me for abusing my feet with all this standing, but I was in my element cooking.

Monday morning, before the lecture, was the appointment with the neurologist. She was very nice and confirmed what I had been telling Robert all along. I have to learn to deal with the neuropathy. If I can get some relief from the symptoms I would be very happy, but my old lady walk maybe something we have to live with for a long time, or forever. The Neurologist told us that we can find some relief from medications, but it will not remove all the symptoms. Robert also asked about exercises, and I told her that I’ve been searching the web for exercises to try and help but they all seem geared toward those with diabetes or muscular and/or skeletal issues. She agreed exercises for neuropathy will not help my symptoms. I have chemically induced, chemically killed neurons. The best we can hope for is my nerves will heal and the neuropathy will go away. For some, this never happens. Only time will tell.

She did change my Gabapentin prescription. She said that 300 mg at night was definitely not enough. She had a new prescription sent into my pharmacy to change the dosage to 100 mg capsules. I am to continue to take 300 mg at night before bed, but start adding 100 mg in the morning. If after a few days, that does not provide enough relief to allow for a more normal lifestyle, then add another one at mid-day. I can continue to increase the dosage every few days until I can get through the day with normal movements without having to stay off my feet or not use my hands for hours at a time. The goal is to not try and remove all the sensations from the neuropathy, but to give me enough relief I can have a semblance of normal. She also signed the DMV paperwork for a temporary handicap placard. At this point, steps mean everything. The fewer steps I have to take in a parking lot allows me that many more steps where I really want to be walking.

Robert was relieved to know that my pushing myself on my feet was not creating more damage as he could see me walking more gingerly, hunched and haltingly. I think he finally understood what it is I have been feeling as I continue to try and be “normal” throughout the day. After Saturday and Sunday, my feet are still not very happy with me. The more I use them the more they hurt and the longer it takes for them to go back to the normal buzzy, numby feeling, and then the shorter the time it takes to bring them back to the super painful walking. I don’t think adding the 100 mg in the morning is quite going to cut it, but it’s only been one day with the new dosage.

After I had pulled myself together from my emotional outpouring at the lecture series Monday afternoon, I headed to AAA to get the temporary handicap placard. From there to the pharmacy to get new Gabapentin prescription, then to Whole Foods to get some fresh herbs I learned about at a Lunch and Learn at Cancer Support Community last week. Lemon Balm is supposed to be very good for nerve issues, and they didn’t have any fresh Lemon Balm, but they did have Lemon Balm oil, so I picked up some of that. I have been adding fresh herbs and the Lemon Balm oil to my water.

Heather and Joseph were back at our house Monday afternoon so Heather could do some laundry. The washer at her complex was being hogged… He and I ended up in the back yard blowing bubbles. The magic of bubbles is ageless.

 

 

 

 

 

 

I almost forgot, the facilitator of the lecture series also introduced us to cards called “Affirminators” (you can find them here on Amazon).  She walked around the group with the deck fanned out and had us all pick a card.  Mine read as follows:

“Strength – You are hereby declared a strong, resilient warrior of heroic proportions.  Enjoy your battles, whatever they are, because you’re guaranteed to come through them stronger, brighter, and more compassionate. (And based on what I know of mythology, probably with great hair and a six-pack.)

I loved that card, it was exactly what I needed.  So I ordered a box for me.  I plan on picking out an affirmation card every day at random to add to my other list of affirmations:

1. I find enjoyment in exercising every day.
2. I am a hard working and productive person.
3. I am mindful of what I eat.
4. I choose to love my breast as they are now. (Even though I still cannot say this one out loud)

And today’s pick:

Get Centered – When it gets to be too much, whatever it is, I close my eyes and return to center.  In my center, I have the wisdom and tranquility of a sea turtle, holding a crystal, floating through space on a chaise. (Sea Turtle, crystal and chaise were all fill in the blanks on the card.)

Part of the theory of Affirminators is that positive statements said out load can radically improve your mood, relationships and life experiences.  I love these cards.  They impart a witty wisdom and make me smile.

Today I did breakdown and use an electric cart at the grocery store.  My feet really do not like me much today and it didn’t take much to start the walking on rocks pains to start in after our first stop on our errands today.

It’s past bedtime and I am starting to feel really tired, so I will cut this off here.

Tomorrow is another day.

Life is knowing I will get through this

I’ve put off this post as I really didn’t want to face what’s coming next. It all started Monday; that was my follow up with Dr. Goldberg for the most recent surgery on the boob. It’s all looking good; the bulk of scar tissue that had been building up under the vertical and horizontal incisions was cleaned up and smoothed out. No more dimpling and strange pulling under the right breast. Incision is healing nicely. I have some slight yellowing bruise to the left of the vertical incision above the horizontal incision.  This is where the majority of the cavity inside my boob was. All closed up now. I still have a large lumpy mass of scar tissue inside and when I lay down you can see it pushing against the skin. Right boob is still Saggy Saga, and the left one wasn’t touched so it’s still Perky Flat Bottomed Bess with a dimple. Figured I should name them since I still talk about them so much in my brain, and on paper….

Dr. Goldberg released me to start radiation therapy in 3 to 4 weeks. Once the incision is completely healed I can start. She said I should call to get the mapping started. Then she said goodbye, wouldn’t be seeing her for a while. Like NEVER again if I have my way. Still not sure I want to explore other options. I’m not ready to face that kind of disappointment again. Like my brain says, “you see what happened the first time, why in ever loving hell would you let anyone else cut them?” I’ve got time to stew on this, it’s not like I can have surgery anytime soon. I believe I have to wait at least 6 months after radiation before I can try again if I choose.

I called Dr. Endicott’s office Tuesday morning to get the ball rolling on the mapping. Jen was so nice and we worked on the date – July 10th for the mapping. Then she started looking at the calendar to start radiation treatment. Dr. Endicott is gone the following two weeks after that, so she wasn’t sure if Dr. Endicott would want me to wait until she returns to start or have one of the other Radiation Oncologists oversee my first two weeks of radiation therapy. I asked Jen if I could apply temporary tattoos for radiation. She got very excited and said she could hardly wait for my mapping and treatment. Seems the techs LOVE surprises. I quickly got to work on finding 30+ radiation themed pics to turn into temporary tattoos.

I also cut my hair again. I wanted shorter. I have no idea what I want to do with my hair, and I just don’t want to deal with it right now. So I took the trimmer to the lowest setting and went to buzzing my head. I have other things to deal with that are much more important than hair. And it’s much cooler without all that (~1 inch worth) of hair.

I checked in with Mom, as her reduction surgery was Tuesday. She sounded a bit groggy, but better than she did after her lumpectomy. She was doing great and my wonderful Sis-in-law has been doing a superb job of taking care of her after her surgeries. She also had a neighbor who was going to help clean up her incision site where her drain was leaking a little bit. All good on the Eastern Front.

Tuesday night we picked up my friend from Support Group who needed a ride there, and we all went to our meetings. I was telling her about how Hubby is very worried about my neuropathy, as the more I try to do (walk), the worse it gets. It is a constant buzzing irritation in my toes and the balls of my feet. Putting on socks intensifies that irritating tingly numbness. Put shoes on and it’s taken up another notch. Walk or stand and within 10 minutes or so my feet are so irritated I start swaying back and forth when standing to try and relieve the irritation. In the mean time the irritation swells to a throbbing, buzzing, tingly, numby feeling. I still have sensation in my feet, so it’s not as bad as some people have where they cannot feel their feet on the floor. Then there is walking. Once I hit that throbbing, buzzy, tingly, numby feeling I start limping on both sides. Basically I start walking like an old lady in my subconscious attempt to relieve the irritation. Then I start getting a sharper localized feeling, usually in one or two of my toes, which feels like a rock is starting to dig in. When it gets really bad I get that feeling in the middle of my foot.

So yeah, to Hubby, it looks like it’s getting worse, because the more I try to do the less time I allow my feet to relax between these episodes, and then they come on sooner and last longer. He can see the physical effects of this, the old lady walk. I try to walk normally, but my body takes over and then there I am, walking gingerly, hunched against the pain building in my feet, and then he gets concerned angry with me for pushing myself. Then we argue, then I cry, then he holds me while I pull myself together gain, and we apologize until the next time.

He can’t see that my hands are worse. I can hide that better. He doesn’t seem to notice that I no longer knit or crochet because it hurts my fingers too much. I put off doing things with my hands because they are worse. I get the sharp shooting pains usually in my thumb and the middle of my palm. The other morning I added weights to my floor exercise routine and just holding those for a few minutes to get some arm exercise in I had shooting pains in my hands just trying to get dressed after my shower.

My friend sympathized with me and frustration this is causing me with Hubby because he keeps telling me to stop. We both agreed it’s a good thing I’m seeing the Neurologist on Monday so he can hear it from the expert that this is the way it is until (if ever) it goes away. Hopefully the Neurologist can either up the Gabapentin dose or give me something different that will help mask the symptoms of the neuropathy.

Then the rest of our support group started wandering in, and group started. We talked about the fund raising event that was Sunday. Hubby had printed up a list of what he wanted to bid on in the silent auction, and gave himself a budget. He gave up on a few items, the bid prices were too high for his liking but he was successful with the four top items he wanted. He was strategic in what he bid on; there were reasons for his picks. One was a gift card to Primo Italia Restaurant that our neighbors love. This way we could treat them to dinner without them fighting with us over paying the tab, like they do ALL THE TIME! Then there were two Napa Winery tours with private wine tastings. Both right up my parent’s alley. Pay back for all the times they have treated us in Napa. And then there was the bucket o’craft beer he picked up for the kids. And the galvanized metal bucket would make a nice planter in the future. Our group’s facilitator is one of the founding members of Cancer Support Community. She loved that we got the two Napa tours. She had been the winner last year of one of them and said it was lovely and the wines, which are only available direct from the winery, are superb.

 

 

 

 

 

 

 

 

 

 

 

Then we got to the heart of the matter, what’s going on with each of us, do we have any words of support or wisdom. G was there this week, she has completed day 12 of 20 radiation therapy treatments. Her left breast/chest up to her collarbone is red. Agonizingly raw red, with blisters forming all over. Her radiation techs told her don’t scratch no matter how much it itches. The skin breaks and you have to stop treatment until it heals. She is using the creams religiously and they told her to make sure she puts hydrocortisone cream under the burn cream. She told my friend and I we’re both as fair as she is, make sure we use the creams!!!! She only has 20 days – 4 weeks of radiation therapy. I was all “fuck me!” I have at least 6 weeks. She said it itches horribly. How the F am I going to get through 6 weeks of this? My skin is going to be fried. She was glowing red, it looked raw, it looked painful, and she was thankful she only has 8 more treatments to go. I wouldn’t even be 1/2 way through at 12 treatments.  Here are some samples of what the radiation “burns” can look like:

This is what I have not wanted to face. The irritating burning itch of radiation and then the exhaustion that comes with it. I have been feeling better physically, well except for the neuropathy, but more energy. Ready to be done, ready to find my new self. Ready to be normal. Tuesday night was an all too real reminder that I am not there yet. I have one more hurdle to get through and what I saw scared me more than I thought it would. And I still have that little, itty bitty, tiny seed of fear that this will make me sick as well. I remember how sick I was when I had to ingest that radioactive isotope for the thyroid cancer. That radiation oncologist told me I was highly susceptible to radiation sickness. Dr. Endicott didn’t seem to think it would be a problem, but she wouldn’t rule it out either.

Others have survived this; they have been able to get through. There was one gal who had to stop her radiation treatment to allow time for her radiation burn to heal because it got too bad, so it delayed her final two weeks of treatment, but she eventually finished. I can do this. I can do this. I can do this. I can do this. I’ve been reading up on radiation side effects so I have all the information set in my brain. One of the things they talk about is the redness and blistering is more prone to areas under the breast if it sags over the chest wall. Great… Saggy Saga is just a gem to give me an area of first irritation. Having fair skin is another good indicator that you will have an overall burn instead of just patches of skin that react, like under the sag. Thinking about all this the past two days has made me tired.

I did finally fill out an Advance Health Care Directive. Now I just need to get it witnessed by two people not related to me. I forgot to ask the neighbors if they would do this when we took them out to dinner last night. Primo Italia was delicious, and we had a great time hanging out with them as usual.

Checked in with my mom again today, and she is doing well, and she loves her new boobs. My friend also loves her new boobs too, and she had her drains removed yesterday, and mom’s drains get removed tomorrow. They are healing fast and loving their new looks. I am soooooo happy for them.

Life is keeping my eye on the goal

 

Yesterday I went with our neighbor to the Redondo Beach Street Fair.  He drove and wouldn’t let me even pay for parking.  He also was wonderful when my feet wouldn’t let me walk anymore, pushing me around in the wheel chair.  They have the chair for when their oldest son got really sick and could not walk, and their youngest son, who has physical limitations in his ability to walk, needs a chance to rest when they go places.  They are also letting us borrow the chair for the charity event we’re attending today to support Cancer Support Community.

I picked up some casual outfits, since I seem to be spending more casual time right now…  One of the outfits was from an Italian clothing company and as I was giving the vendor my choices so I could pay I could feel myself being drawn to something to my left.  It was a physical sensation that pulled my eyes to two necklaces one of the proprietors was setting out on display.  One of the necklaces had two large chunks of raw white calcite crystals in a lariat style drape with silver beads and silver rope chain. I could feel the positive energies pulling me to the calcite. I had to have the necklace. It went perfectly with the pale gray and taupe, beachy drape of the soft pants, shell and light cardigan I had just picked out. White calcite is a healing crystal. It helps lower blood pressure and pain. It helps the body absorb calcium. It amplifies and cleanses energy from the environment and restores motivation, accelerates growth and development. It is also reputed to absorb energy and return it to the sender having transmuted and amplified it, as well as cleanse auric fields and chakras; it is the stone of new beginnings. It was obviously what I needed right now. This picture is not with the new outfit, but I love the necklace and the energies it emits.  Synchronicity.

As I was doing my morning pages today, I was thinking once again about how I feel about myself. Buying new clothes to hide what I don’t like it not an answer. Being stuck in an armor bra which emphasizes how much of my breasts I have lost is not helping me with the raw emotions of bereavement that cling to me like cat hair on knit fabric. Every time I think I have removed the loss, the pain, the anger, the frustration, the sadness and despair, I find yet another clump of those emotions of grief clinging to a space I thought I cleansed. I will find my balance, I just don’t like that it seems to be taking forever.

I don’t like how any of my clothes fit me now. They all fit me fine 9 months ago; I just had bigger boobs that helped hide the bulge of my stomach. I was symmetrically fat, now I have boobs that look like I lost 50 lbs+, and a waist that doesn’t. There is no hiding that I really need to address my weight any longer. And that scares me. What will my boobs look like when I lose the weight I am going to take off? Will I still feel so out of balance with my body? Will I still hate the way clothes look on me? I tried on a dress this morning I was thinking of wearing to the event this afternoon. I clings to the tummy bulge and has extra material in the princess seam of the bust. I can cover the bust issue with a little shrug that goes with the dress. It still looked horrible. I have a closet full of clothes that I feel I can no longer wear because of my boobs, or lack thereof.

Deep breath, this is temporary.

Deda said I should start the process to get a second opinion of what can be done to fix the boobs now so I have a positive to look forward too through the radiation process. I’m not even sure I want to risk going back under a knife again. I will have to think about this. I guess it could not hurt to go through the process of getting the consultation, seeing their before and afters, talking to previous patients. Part of me is afraid I will be told I should just be happy with what I have, and it will leave me feeling like there is something wrong with me for not liking what I have been left with from this process. I already regret letting a plastic surgeon near me, and there is that voice in the back of my brain that asks in a nasally vociferate voice- “why in ever loving hell would you allow another one to even contemplate touching our boobs”.

One of the other things that has been lurking in the back of my brain is recurrence. Is this delay in starting radiation raising my recurrence risk? One of the girls in support group made the statement that with this delay my radiation oncologist may want to change my “dosage” from 30 days to 35 days. Does that even change my chances of recurrence? I slightly worry about that one little cell that has managed to escape. Has evaded the chemo assault, and it is lurking in the shadows of my bone marrow just waiting its chance to take another swing at me. I am not afraid of dying. As so deftly put by J.M. Barrie when he has Peter Pan say, “To die will be an awfully big adventure.” So why do I keep having this niggling concern about recurrence? This slight disquiet in my brain has me thinking about a notebook that came with the chemo care package Deda sent me last year. The cover of that notebook lists things that cancer cannot take away from you – hope, love, faith, peace, confidence, spirit, friendship…

But then I think about Deda’s hen that just passed away. She died peacefully in her sleep, head tucked under her wing in her coop. She was a “blonde” chicken, lovely in her white plumage, klutzy like most of us women in the family, loving and kind. What a beautiful way to die, to just fade away from your body in your sleep. This is what cancer can take away. It can take away dignity. It can take away that silent, tranquil ease of the spirit from the body. I’ve watched people die from cancers. As much as we tried to ease the dying process and make it as dignified and pain free as possible, it wasn’t that easy. The slipping from the body was troubled and painful. It was fraught with hurt and anger. That is what I fear. The indignities of cancer, and the possibility of not having that untroubled transition from life in this mortal body to that new adventure.

It’s not death, its how I die that is at the root of this angst. That and I always wanted to be that cool Nane that drinks whiskey and listens to the grandkids and the great grands, as they spew out their hurts and frustrations with life and love, and I could tell them over a good game of Poker or Gin Rummy, while we drink that fine whiskey or wine, that life is what you make of it. You take the good and revel in it, wrap your heart and soul with those soft balmy memories; soak your heart in laughter with your loved ones, and seep you spirit in the quiet tranquil moments spent together. Then you use that shiny armor you have created within you to help you face the bad times. To gird your loins, to laugh in the face of adversity. To help you find the silver linings when life throws you that curve ball. Don’t worry about what others think of you, worry about what you think of you. Play with your hair! It’s not what makes “you” you. Dare to be yourself. Damn the torpedoes! Learn to listen to that still small voice inside. That is God, that is the universe, that is your best you. Love often, even if it hurts, and then love some more. Remember you cannot “save” everyone, there are those who are on a path of learning that will take them through very rough lessons, you have to let them learn those lessons. Remember to laugh! Remember to be kind to your knees, they help you do so much. And wear sunscreen. Don’t forget the sunscreen. I don’t want to miss this by having cancer take me out before it happens.

As I sat on the sofa with Hubby and listened to the “football” game being aired – Senegal vs. Japan, I was perusing Facebook to try and find the post Deda made about her hen. Instead Synchronicity had me click a link for James Corden carpool karaoke. This was with Paul McCartney and they were driving through Liverpool. Paul showing James all is old haunts, his home, where The Beatles came to be. At one point Paul tells James that his dead mother came to him in a dream and told him to “let it be”. That was the inspiration for the song. At that moment the tears gathered and spilled out of my eyes, making lazy little runnels down my face. Healing tears. Tears that reminded me I had forgotten the curative power of music, and specifically how much I love the power and simple beauty of The Beatles catalog. I know that this is not a magic wand that will take away all my woes, but it’s another step, another tool, another little magical energy that reminds my soul of what it is capable of being. A gentle reminder that there is beauty, and it’s ok to walk away from the hurts and pains, it’s ok to let the tears fall when the need arises to wash away the negatives that keep trying to take root. It’s ok to Let It Be.

Life is letting it be

 

Yesterday was surgery to fix the “hole” in my right boob.  We arrived at Torrance Outpatient Surgery Center at 9 AM as directed and checked in.  I was in the back to prep for surgery by 9:30 AM.  And Dr. Goldberg was there right before 11 AM to go over the surgery, and draw purple lines again.  Not sure why she needed to draw the lines again, she wasn’t doing any pulling in, lifting, moving anything,  She was only planning on opening up my bottom incision, debridement of the cavity inside that was not healing, then seal me back up.  Add a drain if she could not get the cavity inside to come together.  Anesthesiologist came by and ordered the scopolamine patch for me so I would not have so much nausea after.  I love the patch!  Makes coming out of anesthesia so much easier.  I was moved to the OR by 11 AM and was out within a couple of minutes.

When I woke up as I was being set up in recovery, my first words were “Damn that hurts, a LOT”.  My first conscience thought was the pain.  My boob hurt, horribly hurt.  I’ve never come out of anesthesia like this before.  Wanting to writhe in pain, wanting to cry because the pain was so deep, constant and achingly sharp.  As they administered the first ML of dilaudid, my next question was did I have a drain.  I still had not opened my eyes yet, but my recovery nurse was patient and answered my questions politely.  No drain, which relieved me as that meant she was able to close up the cavity.  In my brain I was celebrating, 3 to 4 weeks and I can start radiation, maybe sooner than that I can start swimming.

Ten minutes later, eyes open I was still in more pain than I had ever been in combining my last surgeries together.  Sandra, my recovery nurse administered another ML of dilaudid.  This brought my pain down from 7 to 6.  Marina, my real recovery nurse, came in right after the second dose of pain reliever, and Sandra checked out.  Seems Marina had Sandra cover for her in the morning so she could attend her son’s elementary school graduation.  He starts Middle School next school year.  Marina got herself situated, told the waiting room I was ready to have Hubby come back and sit with me and watched me continue to grimace in twitch in pain.  It was in my boob, below the nipple, deep, close to my chest.  It felt like I was being cut with a hot knife.  It was sharp and achy at the same time.  Marina called the doctor to ask for authorization for another dose of dilaudid, and approval to add 1000 mg of IV acetaminophen.  Once I had both of those in my system the pain was very tolerable.  I was down to a 3 on the 1 to 10 pain scale.

I am used to dozing on and off once I come out of anesthesia.  Sandra the first nurse even told me to nap; it would help me deal with the pain.  I could not nap.  I hurt too much.  By the time the pain was tolerable, I was trying to doze but just could not fall asleep.  I laid there in my inclined position trying to doze off with my eyes closed, but sleep evaded me.  It took a long time to set up my release; seems Dr. Goldberg left conflicting discharge instructions.  Marina had to wait for Dr. Goldberg to call back to clarify the instructions to be provided to me upon leaving.  Most of the instructions were the basics – watch out for infection, call for a follow up appointment, no straining the side of surgery, sleep with torso elevated and no side sleeping…  but then she left instructions to start the antibiotic, but no prescription for an antibiotic.  And I could shower today, but do not get the incision wet.  Huh?  So we had to wait for the clarification on these two items.  We finally got out of there about 4:30 PM.  This was a lot longer than I thought we would be there.

It wasn’t until we were leaving that I felt the new pain, the pain that has remained with me all night and all day today.  It is not in my breast, but below my breast.  In my torso, through the rib cage, a few inches to the right of center of my torso.  It’s a sharp, digging, deep, stabbing pain.  A pain that brings me to a doubled over halt and catches my breath.  I am sure it’s because newly regenerated nerves from the previous surgeries were cut and irritated from this most recent assault on my right breast. I cannot move my right arm without triggering this pain. We found icing it helps keep it at bay. I have found if I hold the spot where this pain originates while I move about I can keep it from advancing across my whole torso and deep into my rib. It has made sleeping, and doing any kind of movement today very interesting. If I stay on top of my Advil, it helps keep the pain down from the very worst, but it is still there if I move. After a fitful night of sleep last night, not only because I am once again forced to sleep on my back, but because of the pain caused by movement of my right arm, Hubby said I should take the Toradol. I was hoping this surgery would not cause me as much discomfort since it was going into a previous surgery site, but I believe he is right. Advil as not cutting it at night, so tonight it will be supplemented with the Toradol. I am hoping this will help me sleep better tonight.

Hubby did help me cut my hair today. We now have matching haircuts. I already feel lighter. I actually would like to take this shorter, but Hubby is worried I will not really like having hair shorter than it is now. As I noted on Monday, my hair is the least of my worries right now. I’m not ready to decide what I want to do with it, so rather than have hair I don’t know what to do with and it bothering me, I’d rather just keep it trimmed down. I have more important things to deal with, healing, getting into an exercise routine I can keep, dealing with my neuropathy, starting radiation therapy. Dealing with all my emotions that now want to come out.

When I was going through chemo there was no time to deal with the whole enormity of this situation. It wasn’t denial per say, more compartmentalization. I didn’t have the emotional strength to deal with chemo and all its effects, and all the different emotions this diagnosis and my treatments would evoke. Now that I am moving to more recovery than actively treating my cancer, I am finding all my sadness, grief, anger, frustration, hurt, and self worth coming out. There are still days when I find this all overwhelming. Like the days I fell apart and Hubby had to hold me together while all the emotions poured out my nose, eyes and mouth. My grief is not like that anymore, but I still find myself with moments of sadness and despair that I will never find a normal again. The tears softly gather in my eyes and in my heart. There is no great outpouring, but those emotions are still there. It still catches me at times. I want this to be over, to be “normal” again, and someday I know I will feel normal, but I’m not there yet.

I hand write every morning. Some of my frustrations come out in those hand written pages. My sadness, my anger, my grief. Also my hopes and dreams for my new future. My gratitude. I am so grateful for my husband. He has been my anchor through this whole journey. I am grateful for my children who have done all they could to keep normal going through this journey, understanding when I just couldn’t be me, couldn’t be present, couldn’t deal with life. Still showing up and cooking for us, or accepting all the take out we ordered for family night dinners. I am ever so thankful for my extended family, for all their emails, texts, notes, phone calls, and Facebook shout outs. They have always managed to reach out to me when the universe knew I needed the boost.

Then there are all my friends, who also have insured I know they are thinking of me and praying for me. Even now, when I am “cancer free”, even though I still have more treatment to do all we can to keep  e cancer free, all my family and friends still keep in touch, still check in every once in a while, let me know they are still there, still hoping and praying right along with me. I cannot begin to express how thankful I am to all these people who uphold me in my time of need. All this and more comes out in my “Morning Pages”. But I have really felt compelled to write about my gratitude.

I am learning to embrace my inner dialogs, those inner voices we all have, each distinct in my head with different inputs. I am learning to not fight those inner discourses, and to hear what they are really trying to say. Like my Red Ogre voice, that loud, brash, angry voice that is afraid of not being worthy of love and failure, the little child voice that is timid and just wants to be loved, and the Goddess voice that quietly reminds me I am still capable of good in this world. These inner “me” are helping to sort out all the different emotions, helping me deal with them and let them come and go as needed. Knowing I have the love and support of so many sustains me through this pilgrimage.

Life is  embracing all the emotions

As I have previously mentioned, I was accepted into a study at Stanford.  The study is to try and determine what influences breast cancer treatment decisions, and counsel doctors and surgeons out there providing the initial treatment recommendations on what they can do to help support women in making the best treatment decisions.  Specifically this is to address the high percentage of woman who are opting for bilateral mastectomies rather than acceptable treatments of lumpectomy or single mastectomy when there are no factors that would call for this radical surgery.

Last week we headed back to the San Francisco Bay Area to stay once again with my parents for a few days while I met with the researchers at Stanford to complete the portion of the study that needed to be done there.  There was questionnaires, forms, decision making tests, risk taking tests, and to cap it off was the functional MRI while you went through visual and response mapping.  

Then for the first three days this week is the saliva collecting. There are certain times of the day I need to collect the saliva, and freeze it. Once I have completed three days of collection three times a day, I FedEx it all back to the Stanford research team. I was highly disappointed when I found out the saliva collection was to saturate a cotton “plug” in your mouth and not me spitting into a container. For some reason I was really looking forward to spitting into a collection tube.

 

We drove up to my parent’s house last Wednesday, with my first 1/2 day at Stanford on Thursday, the same day as my Mom’s lumpectomy. It was nice spending more time with my parents than we had the previous week. And we treated my Dad (and Mom #2) to dinner on Saturday night for Father’s Day. I think I gained 10 pounds while we were there eating out every night!

My neuropathy feels like its getting worse. I know it’s not really, but trying to do more seems to make it feel worse. I do have an appointment scheduled with the neurologist in a couple weeks. Plus, I have surgery tomorrow to close up the cavity in the boob so I can finish this whole healing thing and get on with my life. Once I am cleared from that surgery to immerse in water I plan on joining the local gym with a pool and start swimming daily. I am really hoping getting back in shape will help me feel better about myself.

Surgery is scheduled for tomorrow morning. Not that I am looking forward to another surgery, but I am ready for this surgery.  I know it is what is going to get me moving to the next steps. I am not overly anxious about this surgery, but I am wondering what changes this will make to the right boob. Hubby said Dr. Goldberg said she might try and pull it a little tighter to help lift it a bit so it doesn’t pull and sag so much to the right. I was telling my mother I have never had my breasts “fold” over at the chest wall. They sagged a bit, but not to the point that the breast tissue folded over onto my ribs/torso. My right breast when it is not in a bra/tank does just that. It folds over and touches my torso. It feels really weird as I’ve never experienced this before and it only happens on the one side. Where it folds over is on the right side of the breast as well, towards my armpit because that is where my breast is the fullest. Maybe after tomorrow it will not sag as much. This doesn’t fix the left boob with the flat bottom, but I’m not going to worry about this anymore. Or at least try not to worry about it. It’s one of those things that stares me in the face every day, kind of hard for me to miss.

I am continuing in the lecture series as well, and feel like I am working towards better acceptance of my new me now. One thing I keep mentally obsessing about is my hair. With my hot flashes being a constant irritant to me, and hair making me feel hotter, and my hair getting a little longer now, I’m really feeling uncomfortable with it. I actually liked not having any hair. Shaving my head was always something I entertained doing. I hesitated due to Hubby’s lack of hair and didn’t want to be insensitive to his inability to grow a full head of hair. We discussed this on our drive up north and again this morning, the fact that I really don’t know what I want to do with my new hair and really don’t want to deal with it right now. I am over the baby softness of my hair, and I am just not ready to make any decisions as to how I want it to look in the future. It’s becoming a nuisance to me right now. We have agreed he will help me shave my head this week. His shaver is not charged, so we couldn’t do it today, and tomorrow is surgery, so later this week. My self identity and worth has never included my hair. Evidently is does include my boobs, but not my hair.

Yes, hot flashes continue to be a bane to my current existence.

Part of the lecture series was to list 10 tiny changes I can work on. I didn’t really have time last week, so I will start working on that this week. 10 tiny changes. I can do that.

I have found that some of the things I was exposed to during the study at Stanford have left me feeling a little emotionally raw. I am sad, and the slightest little bump to my emotions makes me want to cry.  The recent articles detailing what is happening at our nation’s borders brought me to angry frustrated tears. And if I think about or hear further information on what is continuing to happen I am ready to shed more of those bitter tears. A noted pediatrician visited a child detention center and found no human contact is allowed with the detained children. So not only are we taking away the only emotional support this young children have ever known, we are denying them any comfort after we have ripped them away from their parents. There are those that think this is justified, but to me nothing can justify this abuse of children. Even when a mother from Honduras was told that if she went to an entry point and requested asylum her child would be taken from her and she would be placed under arrest, she told the reporter telling her this, she was still going to do this as it would be better than going back to the death threats she had been receiving from the local gangs. And then there is the story that one woman in a detention facility relayed to a lawyer there to try and assist her in her deportation case that her breastfeeding child was ripped from her arms. Homeland Security denies they are separating babies from mothers, but why would a woman in tears tell this to a lawyer trying to help her and not know where her baby is now? I believe the distraught mother over Homeland Security. I am heartbroken. I thought we were better than this. Pediatricians, Psychiatrists and Psychologists all agree this constitutes child abuse. And I am not talking about the unaccompanied minors that have traveled to the US to escape the violence in their home countries.

I feel so much sorrow. Sorrow for my country and how inhumane it is acting at this point, and sorrow for me, my losses over the past 9 months. I am working on my own losses and getting past that, but the news lately is just compounding my grief. I know I will get through this, but I feel like it’s a step back from where I was emotionally just last week.

On a good note, The Toothless Wonder Cat was very quick to forgive us for leaving for so long. Of course Kitty Crack (Roast Beef) and copious amounts of petting and brushing helped with the forgiveness.

 

 

 

 

 

 

Life is getting past the grief

Not only was today the next lecture in the 8 week series, which I am enjoying, as I am finding the new tools being presented in this series to be very helpful in my emotional and physical recovery, but it was also my next check up with Dr. Goldberg, my plastic surgeon.

The instructor for the lecture series helped us all with our affirmation statements.  I have fine-tuned mine.  It will be my mantra every morning and every night.  I have homework again this week, print out my affirmation statement and post it where I will see it.  I also have a list of 10 little things I want to accomplish.  Need to post those up too.  Next – Dr. Goldberg.

Dr. Goldberg walked into the exam room all smiles and hopeful, “the hole has completely closed up, yeah?”  Not so much.  It’s closed up a little more, but not a lot since we were there three weeks ago.  Still a little under 1 CM or so to go.  She pulled the packing strip from the hole and peered around.  She’s not happy with what she is seeing.  I have stopped healing once again.  She said this time she can see the epithelial cells starting to grow right inside the hole where the 1 CM or so cavity is inside my breast.  She said we have two choices; 1 – we continue as we have been trying to coax the healing along, but she thinks this may take weeks and weeks more, like 6 to 8 weeks more.  And there is no guarantee that the cavity will continue to heal as it should as she believes based on what she can see the interior of my breast has “sealed” itself making “skin” start to grow inside.  2 – And this is her recommendation, take me back into surgery, she opens up what is left, cuts out the healed layer (epithelial layer) over the scar tissue and sutures/glues it all together.  She may have to leave a drain again, but if she does this time it will not be removed for at least one week, maybe two.  She believes this will be quicker and get me onto the final phase of my treatment, radiation therapy, sooner rather than later.

I asked her how long it would take to heal from a second surgery if we go this route.  She advised 3 maybe 4 weeks.  I weighed this against the 6 to 8 to never weeks, and have to do the surgery anyway plan and agreed surgery it is.  Hubby agrees as well.  She was hoping to work me in this Friday, but I told her we would be out of town the remainder of this week.  Hubby was worried I would be upset if we waited until next week for this surgery.  Nope, I am good.  I would rather keep the schedule we have set up for the Stanford Study I am included in, than disrupt those plans for a fix of my boob.

Dr. Goldberg said it would be easy, should only take about an hour and we can do this as outpatient.  Now that I know I can ask for a patch prior to anesthesia to help control the nausea I experience, I am not so trepid about doing an outpatient surgery, other than I cannot defer the co-pay amount with the rider on our insurance to cover hospital stays as it will not be an overnight hospitalization.  Oh well.  I’ve saved for this.

She did seem to get mad at me for not liking my boobs.  She said she has seen some bad boobs, and mine look fantastic compared to others.  She started this little rant while I was laying down, saying how good they look and how symmetrical they are.  I kind of snorted and said “sure, until I sit up they look somewhat symmetrical.”  She had me sit up.  This is when you can really see the droop of the right breast, the one with the hole in it.  Again she tried to poo poo this but I could see in Amanda’s face (nurse/assistant) that she agrees with me, they don’t match, at all.  But I am getting better with this fact.  Dr. Goldberg was all hyped up and pointing out the positives in her loud, high, slightly accented voice.  Like she is a cheerleader telling her losing team they are all winners.  This is where she started expressing anger, or maybe its frustration, because I don’t see what she sees.  I tried telling her this is a process, my process.  I know they will not look the same as they did before, but this was a lot of change for me to take in when I really wasn’t expecting this much change.  I’m not sure how much change I was thinking it would be, but it wasn’t this much.  I told her I am working on it; it’s ok that I don’t like them yet.  I’ll get through this.  Even Hubby spoke up and said she’s still working through her mourning process.  She then pointed out how full they are on the sides, and my thought was yeah, because everyone loves having full side boobs.  I almost wanted to laugh at that one.

She finally quit her crowing rant (because that it what she sounds like when she gets into this mode, a crow, cawing at me because it doesn’t like what I am doing), and taped a 4×4 gauze pad over the hole.  No more stuffing it with gauze strip.  Hubby asked her if he should still rinse it out with the saline solution.  She said sure, but I have a feeling the hole to the inside will scar over fairly quickly now that we will no longer be shoving gauze strip through it.  The good news is this brings me this much closer to the ability to swim for exercise.  Dr. Goldberg filled out the paperwork to get me back into the OR and I signed it.  Then she let us talk to Mandy about the possibility of getting me in next week.  She said it looked good, there were several openings, and she would just have to secure the OR at the hospital.  Right now we’re just waiting on a call from Mandy for confirmation of date and time for the next surgery.

My shoulders have really been bothering me, so I told Hubby I wanted to try and scheduled a massage for tomorrow.  He said there was no way I would be able to get into Dr. Dave’s office on such short notice.  Told him I was thinking more of Janelle, who used to work at Dr. Dave’s office but has her own massage therapy practice with a store front in Redondo Beach.  I/we drive by it all the time on the way to Cancer Support Community.  He asked if I was sure Janelle still owned it.  Only way to find out is to call, so I did.  It was Janelle and she remembered me as well and is very excited to have me come in tomorrow so we can work on my shoulders.  I did warn her that I am recovering from breast cancer and not sure if I can even lie on my stomach.  She said we will figure it out.  There are specialty tables and forms we can use to help support me comfortably while she works on my upper back.  I know I will be under a drape, but I feel really weird knowing I will be naked.

Once I had that out of the way Hubby asked me how I was doing.  I knew he meant about having to go back for another surgery, and delaying it until next week.  I was able to tell him I am good with this.  I want to move on with my treatment, and I am getting over my boob issues.  Not completely there yet, but I have been working on it and the big decision is to focus more on the exercise and losing weight portion instead.   If I really still feel out of proportion after I have reached a more comfortable weight, then we can discuss my boobs again, see what my options are, but right now, yes, I am good.  I am really good with waiting until next week.  I want to see my parents again; I want to have Father’s Day Dinner with my Dad next Saturday night as we had planned.

Then Hubby was worried about surgery interfering with possible plans we have made with the neighbors for a little wine and cheese get together the weekend following; and we signed up for the special event fund raiser for Cancer Support Community – Celebrate Wellness, that is being held at the South Coast Botanical Gardens.  The tickets were not cheap, but since this is a second surgery and I already have the armor bras that hold everything in place, this should not be an issue.  I am prepared for this and I don’t think it will be nearly as uncomfortable as the first two surgeries as it will not be nearly as invasive.  She’s just going in and cleaning up the remaining cavity, taking off the top layer of healed “skin” and gluing it all together.  If it won’t glue together, that is where the drain will come in.

If you are interested in supporting the Cancer Support Community, the fundraiser is on their website.  I have the link to CSC on the side bar and a link for the Celebrate Wellness event here.

My fingers and feet still hurt, the more I use them the more they hurt, but putting together a plan to deal with my weight and over all body image feels right.  I feel like a plan is coming together.  Hubby even talked about getting an endless pool installed in the back yard so I wouldn’t have to go to a gym to “swim” or workout in water to keep the pressure off my hands and feet.  He’s so sweet.  I told him I already scouted out a gym with a pool I can join in the mean time once I no longer have a hole in my boob.  I also scheduled that referral appointment with the neurologist.  Monday July 2 is when I get to meet her and review my neuropathy issues and how we deal with them until it goes away!

Now I need to get hopping on my homework!

Life is moving forward despite the boobs

 

I am taking an 8 week lecture course based on the book “The Artist’s Way”. The homework this first week was to start “Morning Pages”, take myself on a date and to read through chapter 1. There is a review of the basics; the morning pages and the date, then chapter one which challenges the reader to create affirmation statements, explore your life in 5 year increments, and turn your inner critiques into affirmation statements. They said this could lead to some emotional turmoil while you learn to set free your “inner child”. I am making this sound horrible and very simplistic, as there is way more to this than what I have so very briefly summarized here.

This past week I have felt on the verge of tears. Not fall apart, need help holding all my pieces together tears. You know those whole body convulsing, grief wracked tears that drain everything through your eyes, nose and mouth. More, I am so sad tears. Sad for my loss. You know those quiet moments when it all of sudden hits you that you can no longer talk to or see a person you loved dearly because they are dead tears? The ones that sneak up on you when you’re remembering all the fun you used to have and the memories drip down your face. Those kinds of tears. The ones that remind you, you are still not quite done mourning.

My inner critic rages, it yells and screams “that it will never be the same again!” as these tears silently sneak up on me. I calmly ask my critic, “What is ‘it'”? It yells again, “The boobs! The boobs will never be the same.”

“Well yes,” I reply, “we knew they would not be the same.”

“They are ugly!” it hollers.

“They are different, not necessarily ugly. Not the same and sure they don’t match, but does it really matter?”

“Of course it matters!” that critic says. “Who will love you with mismatched boobs? Who will want to touch you with one saggy right boob and one oddly shaped left boob? Who tell me, who?”

As the tears slowly swell out of my eyes, I tell that critic, with my breath starting to hitch in my throat, and a calm I feel slowly trying to take over, coming up from the very depths of my soul “Everyone”. This sounds like a beautiful voice in my head. The voice of a mother soothing a fretful child. A voice filled with love and patience. A soft voice, one that in its silence overwhelms all critics, all anger, all hate. A voice that can withstand all evil and triumph. A God voice.  A quiet still voice that lets the tears slowly seep from my eyes knowing it will be OK.

The critic in my brain is harsh, angry, and mean. It says, “You don’t even let your husband hold you, you know he is repulsed by all of this. He is ashamed of your fat and bloated body and doesn’t want to touch you. You are out of proportion now, no matter what you do, you will always be out of proportion. Your breasts will never be the same ratio to the rest of you. You exercise and lose weight, they will get smaller too. It will never get better.” These words burn through my brain, hot, singeing my neural connections, hurtful and edgy, trying to cut the calm the other voice has provided. They make my gut clench, my breath stop in my throat, like it doesn’t know where to go – in or out. It continues, “And even if you wanted him to hold you he couldn’t because you are always so hot. The minute he puts his arms around you, you start sweating and it just makes both of you uncomfortable. Why would you even try to gain comfort from him?”

My inner child responds in a tiny voice, a scared voice, one that is timid; “He holds my hand anytime I need him, and even when I don’t. He shows how much he loves me in so many ways. Just this morning he spent hours searching out images and cleaning them up for me for a project I am working on. If I need a cuddle, he would cuddle with me, even if we do get hot. All I have to do is ask.” As these words pour through my brain I feel that child voice getting stronger, braver, and secure in the rightness of these words swirling in my head.

There are so many other things this critic tries to tell me, but I shut it down. I can only do so much at a time or it will overwhelm. I am allowed to work on one thing at a time. I have decided I am going to address my exercise issue. How I have such a hard time sticking with exercise. I want to feel strong and fit. Plus if I am strong and fit, it doesn’t matter what my boobs look like. The rest of me will be sculpted and beautiful. So these are the affirmations I am working on, and I know my hands and feet currently limit my physical activity, but I am working on that as well. I have the referral for the neurologist. I will call the office next week and schedule that appointment.

In the mean time I am taking the gabapetin, which is a drug that can help with neuropathy pain. I am working on sleeping better using melatonin in conjunction with the gabapetin (gabapetin makes you sleepy). I can sit on my exercise ball and do some core work without putting too much pressure on my feet. I am working on my spiritual self, not just with the lecture series, but within my own meditations and separate writings to explore my feelings and where I now fit in this universe. I am praying and concentrating my energies on my healing, all my healing not just physical.

And I know how loved I am. I am told every day. I am reminded every day. My inner critic may be using this time to try and take over, to take me to a dark, bleak place that I have not been in many, many years, but I have the tools I have used over the years, and I know how to search out new ones as I need them. Hence the lecture series.

Yes, my breasts have changed, and there will probably be more changes in the near future once I am able to start radiation therapy, and I am still mourning those changes, but I am also working on healing my heart and soul over these changes. Hubby is here with me, helping me every step of the way. He is my cheering section, my coach, my shoulder to cry on, my anchor. When I need a gentle reminder, he is there. When I need a swift kick in the rear reminder, he is there. When I need a shoulder, he is there. When I just need a hand to hold, he is there.  And when I need to be on my own, he understands and is there waiting for me when I get back.

So I let those silent tears come, let them slowly build then spill over the rim of my eyes to leisurely roll down my face, taking with them the painful jabs my inner critic hurls at me, and I can start again reminding myself there is an end and it will be beautiful, even if I can’t see it yet.

 

 

 

On a lighter side, we had The Grandson with us for a few hours last night.  He likes feeding the ducks, so I researched the best foods for wild water fowl, and bought a mixture of organic grains and raw vegetables they can eat and made a duck food mixture with oats, millet, sprouted wheat, peas, corn and lettuce.  Of course The Grandson was all for going to the park and feeding the ducks and geese, and or course playing at the playground.

We also gave him the choice of what to get for dinner.  He chose to pick up pizza and eat while watching “Coco”.  While driving to the pizza parlor to order our pies, he changed his mind from “Coco” to “Wall-E”.  On the way home that changed to “Up”.  Once we were home and setting up our plates of pizza and getting the trays set up to put plates on so we could eat, he changed his mind one more to “How to Train Your Dragon 2”.  So we all sat on the sofa, eating pizza and watching Dragons 2.  I still love the scene where Stoic slowly walks up to Valka and as he caresses her face he says “You’re as beautiful as the day I lost you.”  Gulp, OMG, brings tears to my eyes.  I am loved like that.

Life is not listening to the inner critic

Sunday I made dinner.  Went to the grocery store on my own, bought all the ingredients, prepped everything to make a nice Gumbo with sausage, chicken and shrimp, and I made an easy version of dirty rice with ground pork for the Gumbo to be served over.  This was the first time in months, many months that I cooked a complete meal like this.  Dinner was good and as we were finishing up eating we found we had Mutual of Omaha’s Wild Animal Kingdom in our driveway. A fledgling crow was learning to fly, and he managed to flap his way into our driveway.  I had seen the crows out of the corner of my eye while we were sitting around the table talking and eating, and heard the mom and dad crow calling, but didn’t know what was going on.  Then The Middle Son started washing the dishes and he was the one to discover the fledgling flapping around the driveway, which eventually made it to the roof of my car.

 

 

 

 

 

 

After several attempts to get to either our roof or the neighbors roof, the fledgling was back on the roof of my car and decided that was where it was staying for the night.  Mom and Dad went back to the trees in front.  We got up Monday morning to find the roof of my car covered in crow poop and the fledgling still there.  He made an attempt for the garage roof and made it to the next door neighbor’s wood pile.  At this point Hubby tried to go and wash my car off, but the parent crows were having none of that.  They were immediately on our roof and yelling at him and one flew by him really close.  He hightailed it back to the house.  I had an appointment to get to so I was prepared to make a bee line for Hubby’s car when I was ready to leave.  Turns out, I was able to turn on the hose and get a good portion of the poop rinsed off my car while the fledgling watched from the wood pile and parents watched from the trees.  I talked to them all in a calm reassuring voice.  Hubby was flabbergasted they didn’t yell at me.

 

 

 

 

 

 

Monday was also the first session of an 8 week lecture series I signed up for through Cancer Support Community.  It’s based on the book “The Artist’s Way” written by Julia Cameron.  With all the questions running through my mind about what my new normal will be once I am done actively fighting cancer and move into the surviving part, and how will I feel, what will be different, how will I act/react, I was drawn to this lecture series as part of the description was how do we put the pieces back together again after cancer?  Maybe not in the same way, but in a new picture.  I liked the idea of building a new me, a new outlook, a new future.

So Monday I went to the first lecture, purchased a copy of the book, and have been working on the homework assigned the first week.  It’s been interesting and the person leading the course is dynamic and did very well keeping a large group of people on course so we finished on time.  I am looking forward to the next session.  When I got home the fledgling was gone and I could hear crows calling from further away a street or two over.  Fledgling was back on our shed roof later, but he seems to be getting the hang of flying as they have not been back like they were Sunday night.

I finally convinced Hubby to get a physical.  I’ve been bugging him for years to get this done.  He finally agreed and we were able to get him scheduled with our Primary Care doctor in the appointment after mine on Tuesday morning.  I had an 8 AM appointment, and they scheduled him for 9AM.  Getting up that early was more difficult than I thought it would be, but I did it and we headed into the doctors new location.  To remind you, previously I had received a notice from my doctor and my insurance company that our PCP was closing her private practice and moving into a multi-doctor practice.  Her office is in the same general area.

Because this is a new office, even though all her patient files were transferred over, there was still some paperwork for me to fill out, and since Hubby had never actually been to her before now, he had an even larger packet of paperwork to fill out.  Before we could finish filling everything out we were called back and shown into a tiny exam room with one chair, an exam table and a computer on a wall mounted swing arm.  Since my appointment was first I took the exam table and hubby the chair while we waited on the doctor.

We didn’t have to wait too long.  She reviewed where I was in my treatment plan and asked what was up.  Told her the neuropathy was getting to be too much.  I thought I could tough this out, but the daily numbing ache was wearing me down.  And now I am starting to experience sharper stabbing pains in my hands and feet.  Center of both; in my palms and then the middle of the arch of my foot.  I also get some throbbing aches in my toes, with most of this happening at night when I am trying to fall asleep.  As if I don’t already have enough problems with sleep.  Add in the hot flashes and sleep is difficult at best.  We discussed starting Gabapetin which is the go to drug to relieve neuropathy pain, and she put in for a referral for a neurologist so I can get scheduled with that.  Now we just have to wait on the approval from the insurance company.  In the mean time she did suggest I not walk for exercise, or anything that requires me to be on my feet.  Swimming was her first suggestion.  Ok, yeah, hole in the boob….  Bike riding?  Well, I still have to hold on to the handlebars and my hands don’t like that for very long either.  See how the Gabapetin works…  and what the neurologist says.

I asked her how she likes the new office and working with the computer (she didn’t have that in her old office).  She said the computer system was the deciding factor to move into the multi-doctor practice.  She just couldn’t afford to implement a system on her own and the insurance companies were pushing hard for this.  She said the system is nice in some respects, but she misses how she and the staff worked together to get things done, not like in this practice, if she can’t figure it out in the software, she asks her nurse and the nurse comes in and tells her which screens she needs to go to and then leaves.  She doesn’t feel the same camaraderie or collaboration with the staff yet.  She’s hoping over time it will get better.

Then it was Hubby’s turn.  First the doctor took his history and then asked about things that he might be concerned with; his shoulder that he was told 10 years ago needed to be “cleaned out”; the fatter tumor on his back that is now starting to hurt, things like that.  Then she told him he needed to strip down to his undies so she could do the physical part of the exam.  I had a water bottle with me.  One that came in my chemo care bag from my cousin way back in October.  It is plastic, has a pink ribbon charm that hands from the handle and printed on the reusable bottle – “No one fights alone”.  I like it because the lid is leak proof with a button that needs to be pushed to open the lid so you can drink.  I sat in the chair and moved the bottle to the floor next to me while Hubby went to the exam table.  Both of us had laid our clip boards of paperwork on the counter where the sink was.

Doctor comes back in and while going through the physical part I had to scoot the chair closer to the counter so the doctor could get into the corner she needed.  My nice spill proof reusable water bottle knocked over.  I didn’t think anything of it.  He had to drop trou and bend over too for that wonderful prostate exam.  Doc left and as Hubby was getting his clothes back on he noticed my water bottle was over AND there was water all over the floor.   Seems I managed to knock that damn bottle over so it actually hit the one little button to pop open the lid!  As I was grabbing paper towels to clean up the water off the floor I hit the faucet that is one of those touch anywhere to turn on the water, and sure enough the water turned on and proceeded to get Hubby’s clipboard with his paperwork all wet.  I was a hot water spreading mess, and laughing hysterically.  Hubby was afraid to admit he knew me.   At one point Hubby had to follow the nurse out to pee in a cup and then get scheduled for an ultrasound on that fatty tumor to see where it is hitting on his back causing pain, and the doctor came back in.  I admitted my water mess and she and I had a great laugh.

Hubby was back and then we were waiting on one last thing before we could leave and he looked at me as said, “She saw my twig and berries!”  Yes, I agreed she had seen them.  He then said she was the first woman in many years to see his twig and berries besides me, while I sat there nodding, yup that’s true too.  Then he says “It’s cold here!  That was not a good showing!”  OMG I was laughing so hard.

We finally made it out of there and both of us were very hungry, so a stop at our favorite burger joint was in order after we got the car washed.  From there we went home to eat, but were quickly back on the road to head to the post office, then to GameStop to get ourselves an updated PlayStation.  We have a PS2 from a bazillion years ago when the kids were teens.  It still works, but try finding games… and the controllers were not that great anymore.  The Grandson has a PS3 in his room at home so we figured to make our home more grandson friendly, as PS3 to play on here when playing outside is not an option was in order.  We picked up a used PS3 console, an extra controller and some games the Grandson might like.  Later we had to head over to Costco to pick up the prescriptions the doctor ordered for us.  We got back in time for me to sit and relax my feet for a bit before heading to Support Group.

Wednesday found us up early again to head up north to my parents house to pick up some more of their left over hardwood flooring.  We brought a few pieces of their leftovers the last time we were up there and put it on our kitchen floor and kind of liked the way it looked in that little patch.  Hubby wants to set up a bigger sample before we decide if we want to take all their leftovers and use that as our new kitchen floor.  So we drove up Wednesday and arrived early afternoon.  Dad wasn’t expecting us so soon, so we cut into his “chore” time.  I don’t think he minded too much.  He was going to work on planting grape vines in the back yard.  Instead we put him to work helping Hubby load up some more of their left over into the trunk of our car while I took the time to respond to an Army of Women request for eligible candidates for a new study Stanford is doing on Breast Cancer patients.  If you are interested in seeing if you qualify for this study you can find the information here.  Turns out I am one of their ideal candidates, so I am in the study.  It means another trip up north, but anything that helps out Breast Cancer patients in the future is worth it.  Plus it gives us another excuse to go visit the parents.

Once Mom#2 got home, we headed out for dinner and had a wonderful meal where Marine World used to be in Redwood City.  It’s all business complexes now, and so different from what that area looked like when I was growing up.  I remember one trip there with my mom, stepdad and brothers, one of my brothers went “missing” and my mom tripped on some raised black top.  Turned out she broke her foot on the “trip”.  We found my little brother in the gift shop area checking out something he coveted.

Our evening ended all too soon and we all headed to bed.  Said our goodbyes to Mom#2 as she would be up before us to head to work.  She did let us know that the Starbucks we normally go to was closed for renovations.  She gave me directions to a new Starbucks in the area I could go to for my Latte in the morning.

This morning we got up, packed up our stuff, said goodbye to Dad and headed out.  Hubby wanted Noah’s Bagels, so we still headed over to the small shopping area where the closed Starbucks is and Noah’s Bagels.  While in line to place our order I noticed they served espresso drinks, so I told Hubby I would get my Latte there at Noah’s so we didn’t have to make another stop before hitting the freeway and the morning traffic.  Hubby asked me if they made the espresso in the back as he’d only seen the standard coffee makers there.  Nope, there is a Latte Machine, right over there under the order screens next to the counter where they make the bagel sandwiches, etc.  As I was saying this I realized what I was saying – Latte Machine, because there are NO other espresso drinks EVER.  Only Lattes!  Now I am tired and need a few days to catch up!

 

 

 

 

 

 

Life is adventures in klutziness