Month: June 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life is wondering if I will ever love my body again