Chemotherapy – Boob Gone Rogue

Wednesday, April 10 – Robert’s Birthday

The weekend before his birthday, we had family dinner to celebrate. We included our friend Linda as her kids live further away from her than ours do, and does not have the same opportunities to see them. Moreover, we really like her! Heather, Jose, Joseph and Winky arrived early so Joseph could have some grandpa time riding bikes and hitting balls in the back yard. All was going well until Heather, Linda and I heard Grandpa yell in obvious pain from the backyard. We all looked at each other and as I started to rise Heather said she would go.

We did not hear anything from her for a bit, so assumed all was ok out back. Not so much… Seems Grandpa was showing Joseph how to ride a wheelie, and when he transitioned from dirt to the cement pad, the bike slid out from under him. He has degenerative disc disease, and landing on his tailbone then rolling back, and hitting his helmeted head did a huge number on his back. When Heather did not come back in after about 5 minutes, I went to see what was going on. Robert was up and trying to walk it off, but I could tell he was in severe pain. He felt the initial jolt from the landing all the way up his back to his head. Not good. I went and got him some Aleve and tried to convince him to get an ice pack on his back right away. He finally conceded the ice pack would probably be a good thing after about 15 more minutes.

He spent the rest of the afternoon and evening coddling his back. He did request pizza as his birthday dinner, to which Joseph was very excited. Heather brought his favorite dessert – Marie Calendar’s Lemon Cream Cheese Pie. We ate pizza and it was decided that Grandpa should open his gifts before birthday pie so everyone had a chance to digest their pizza a bit.

Jordon, Kelly, Heather, Jose and Joseph all pitched in to get Robert a driving experience at the Porsche Experience Center in Carson. They got him a package that includes 1.5 hours of track time in one of the cars he has always admired.

In addition, Joseph picked out a T-Shirt for Grandpa that matches a shirt he has, so they can wear them together when they hang out. Joseph also picked out a gift bag covered in sharks, with red tissue paper to represent the blood from shark bites.

After presents and birthday pie, in which the musical whirl candle that did not play birthday music much to my chagrin, Jordon and Joseph found some old wrapping paper tubes I had put aside for playing with, and proceeded to have a tube sword duel. Winky in the meantime was having fun trying to shred all the tissue paper from the gifts. I do not know who started it first, but both Joseph and Jordon and picked up all the tissue paper and shoved it under their shirts. Jordon had all the red tissue paper and Joseph the white. Anytime Joseph connected to Jordon’s body with his “sword”, Jordon would reach under his shirt and pull out a piece of red tissue paper to represent blood. At one point Joseph got him in the face, so he found one of Winky’s shredded pieces and shoved it in his nose to represent a bloody nose. I was laughing so hard at their antics! Despite Grandpa having hurt his back, it was a good start to his 55^th birthday.

Robert was worried that his back would not heal in time for our planned trip to Disneyland on Wednesday. But he rested his back as much as he could, stayed on Aleve and iced his back for two full days and felt good enough to make the trip to Anaheim so he could get his birthday button, and of course get some birthday ice cream.

We were not sure how long either of us was going to last, as I had discovered over the course of a month or so that the Klonopin that Dr. R had prescribed for my neuropathy worked great at controlling my symptoms, but was also effecting my cognition. I lost a lot of mental abilities due to chemo; the ability to concentrate longer than a few minutes, short term memory loss, multitasking abilities, as well as not able to do tasks with ease. I spent months working hard to rehabilitate my brain. I regained the ability to do simple multitasking, like watching TV and knitting at the same time. I am slowly gaining back the ease in doing more complex tasks, but they still take my longer to complete than it used to take. I still cannot multitask if I have a difficult process going.

I used to be able to work on an intricate spreadsheet and answer someone if they asked me a question without skipping a beat. Now I cannot even acknowledge if someone sneezes if I am engrossed in a difficult or intricate task. I can hear the sneeze, and acknowledge I have heard it in my brain, but I cannot physically make my lips/mouth move to say God Bless You. I used to be able to take a process I had created in Excel and be able to work through the process/formulas/macros as I explained each step to someone so they could learn how to use the tool I had created. I still cannot do that. I have to put instructions into a document and hand it over. If someone interrupts me while doing a thought/concentration intensive task I cannot go right back to the task and pick it back up where I left off. I have to go back to a beginning step or start over.

I noticed the longer I took the Klonopin the more advances in my brain function I was losing. Therefore, I stopped taking the Klonopin. It has a fairly long ½ life – about 40 hours, so every 40 hours the amount of active drug in your system decreases by ½. As the Klonopin was wearing off, the effects it had on my brain were receding, and I was back to being able to knit and talk or watch TV again. My short term memory, even though it’s still bad, did improve back to its previous level of bad; and my typing, even though it is not as fast as it was before chemo, also improved to my new speed. Granted I find all these diminished abilities frustrating, so having a drug make them worse is just not something I am willing to live with. It still takes me longer to accomplish tasks that I know I could complete in less time two years ago. As my brain improved, the neuropathy symptoms returned. I had hoped that after over a year of healing from chemo, the neuropathy would have improved. I am not so lucky there. Within two weeks I was back to full on neuropathy symptoms I had before we started Gabapentin to try to relieve some of the irritation and pain.

After a week or so at full neuropathy pain, I took Robert’s suggestion of taking ½ a tablet a day instead of a whole tablet. I had been doing this for a little over a week when we made the trip to Disneyland.

Because we didn’t know how long either of us would last at Disneyland, we opted to forego renting an ECV. Robert was in no condition to push me in a wheel chair, and if he could only last two hours renting an ECV for $50 was just not worth it. We walked into Disneyland and the first thing we did was get Robert his birthday button. After that we wandered through the park, saw ducklings, which are always present at this time of year, then headed over to Cal Adventure to get lunch. Robert wanted to try a new dish that is now available at one of the restaurants in Paradise Gardens – The Impossible Meatless Meatball Sandwich. We both ordered one and found a seat in the covered patio/dining area where we sat for over an hour while we ate and talked. The Impossible meatless meat turned out to be excellent. We finally meandered our way around Cal Adventure and of course found our way to Ghirardelli Chocolate to get that birthday ice cream Robert had to have. Again we sat for over an hour. We ended up staying almost 5 hours, so it was a good day.

The following day, when I took out the trash, that musical candle started playing the birthday song. We had a good laugh. I also received the letter from the Breast Diagnostic Center advising no signs of cancer in my first mammogram since September of 2017.

Life is making memories

Thursday October 5 – Port Placement

First, let me start this off by saying that, based on the long list of bathing instructions I was provided, the description of the procedure, and how long everything would take when I was called to schedule the appointment, I would be home and working by 1 pm to 2 pm at the latest. I also thought I would make this post last night. Little did I know…

As I had been instructed, I ate no food after midnight the previous night and only enough liquids to take my morning pills. I hate this part, as having little to no liquid in the middle of the night and again in the morning makes it hard to access my veins. We arrived at the hospital at 9 am sharp, as I had been advised when the appointment was scheduled.

We went to admitting, and the admitting procedure was done quite quickly. The next thing I knew, we were headed upstairs to the outpatient waiting room. I felt like we barely sat down before they called me back to start getting me set up.

They don’t let my husband come back to sit with me until after everything is done, gowned, and the IV catheter placed. I was told to disrobe completely, but could leave my underwear on (not my tanks) and could tie the gown in the back. That done, I went onto the transport gurney. Next came time to find that vein… The nurse asked me if there were any tricks for starting the IV catheter, and I told her my spiel. We decided the first thing we needed was a hot pack to try and get my veins to stand out better. Off she went to get that. In the meantime, the second of the four nurses assigned to my bed number (58) came in, and we were going over my med list and the last time taken.

Nurse number one came back with a hot pack and a handheld near-infrared scanner. Oh My G-d! This device was so COOL! I’d read about them a few years ago and thought I needed to purchase one for myself and take it with me to any appointment that involved a needle stick for blood/vein access. Read about it here. We let the hot pack sit on my arm the last place I told them a nurse was able to get an IV catheter placed and waited a few minutes. Then the nurse pulled out the scanner, and away all three of us went, trying to find a good vein without any valves to hinder the catheter. I now had a visual of why it is so damn hard to place a catheter! My veins are TINY, deep, and branch off with very few places with enough length before a valve (evidently, I have TONS of them), or they branch off to other veins. I think the three of us scoured my arms and hands for about 40 minutes, trying to find a suitable vein that would cooperate, alternating the heat pack around, and trying to get a vein to the surface for easier access.

It was phenomenal how this worked. We first tried a good vein on my right forearm, but it was too deep to access easily. Chevy apologized for the stick that didn’t work, and I told her there was no problem. Once she knew it wasn’t going to go in without digging, she stopped and backed off. That I can handle with no issues, and the parasympathetic nervous system doesn’t care. Then we found a nice fat vein on my left arm at the elbow. I told them for over 10 years, I’ve treated my left arm as a Turnip – can’t get blood out of it. Oh, we would try. The catheter would go in and get a great blood return, but the minute anyone tried to get the blood to come out, nothing or just a little dribble and then done. Like I said – turnip.

We decided to go for it. Because it was an odd angle, I rearranged myself on the gurney to make it easier for Nickie to work with. The catheter went in great, and it gushed! They did need to take a small blood sample, and we got that and more. I guess leaving it alone for ten years made the difference.

Once we got my arm cleaned up and finished all the input for my chart, Nickie went to bring my husband back. My procedure was scheduled for 11 am. We talked and read or played on our phones until the head nurse for my surgical team and the surgeon came over to talk to us about the procedure and let us know it would just be a few more minutes while they finished getting the room ready. Dr. Beck showed us a port and explained how it would work. You can read about the type of port I have here. I was originally told at the oncologist’s office they access the superior vena cava, but this port actually accesses a jugular. There will be two incisions. In one very small spot, they access the artery, and then the main incision, about an inch or so long, is where they place the port and attach the catheter. This is done using a contrast dye and imaging several times during the procedure to ensure proper placement and no additional soft tissue damage than necessary in the area. So this is why the procedure is done in radiology.

I kissed my husband goodbye, and off I was taken to the surgical room. I knew that port placement was done under a local anesthetic – Lidocaine, in conjunction with a twilight drug. They also use an iodine-based contrast. I transferred from the gurney to the surgical table; why do they place you in a cotton gown and then cover everything with cotton blankets? Nothing slides! As I was trying to transfer myself with some dignity from one to the other without choking myself out or dragging blankets behind me. We all laughed at that. The surgeon uses electrical cauterization to help close wounds, so a grounding pad was stuck to my back before I lay down to center myself on the narrow table. Took a good 10 or more minutes to get everything set up before they started the actual prep for the procedure.

Dr. Beck had looked at my chest/shoulder area back in the staging/recovery area and said I needed a medium-sized catheter, but he wanted to double-check once they had me laid out, so we waited for him. They asked me what kind of music I wanted to listen to during the procedure. Classic Rock worked, and all the nurses and technicians in my surgical suite agreed that they should change Pandora to Classic Rock.

Dr. Beck came back in, re-looked at the area on my left side right below my clavicle, and confirmed that a medium-sized port/catheter was what I needed. Once that was confirmed, the correct size port was retrieved, and the serial number was recorded. They started the draping process; my left breast was taped down to mimic my skin and muscle placement as if I was standing, EKG was hooked up, cleaning of the field with betadine, and then the draping. They have that surgical tape they place over the surgery field now, and that was stuck to the towels draped around, and then a tent was draped over me, so I could not see what they were doing. I did have an area to my right where the head nurse would stand and keep watch over me and talk to me during the procedure.

It was finally time to start. Hit me with the good stuff. I thought I would probably sleep at this point, like I do during a colonoscopy. Nope, I remained bright-eyed and bushy-tailed, more so than I thought they wanted, so I was given a bit more. I don’t remember what drug they told me they use for this… After a third smaller “hit,” I finally noticed when I blinked I was much slower to re-open my eyes. Not tired, more…. lazy. Ahhhh, this is what they wanted. Relaaaaaaxed.

Dr. Beck then started administering the Lidocaine. It stings a bit, but not for long. We talked back and forth during the procedure, and then, somehow, we got to football. Dr. Beck is also a true blue 49ers fan! I told him I would high-five him, but he was a little busy. We all laughed at that. We discussed the current team, our hopes that eventually, we will stop being in a re-building year, how we both would love to fire the owner, etc. During a lull in conversation, the music stopped right after the last image was taken to ensure everything was in the correct place and no other soft tissue damage that might need to be corrected before securing the port and closing me up. Dr. Beck was the first one to notice. The head nurse had to go in and tell Pandora that we were still listening. As the next song came on, it started with a light chime, leading us to discuss Baby Rock, classics recorded on chimes as lullabies for infants. I had them all for the grandson. Dr. Beck still couldn’t tell what the song was that was playing, it was an extra long intro I hadn’t heard before, so it must of been a cover of AC/DC’s Hells Bells. I knew what it was, and my right hand was tapping out the rhythm as the signature bell toll kicked in. The head nurse looked at me and said, “She knows what it is, and I very lightly nodded my head. Took Dr. Beck another second before he realized what it was and came up with the song. Another laugh.

All done, I was taken back to staging/recovery and told at that point I had a mandatory 2-hour recovery time. I was asked if I wanted any food or drink and requested some juice. They were perfectly happy to let me just drink juice slowly. I know that sedatives have a tendency to heighten my motion sickness, so taking things slowly is always my best bet.

My blood pressure was high for me, 128/90. It was monitored over the two hours, and I noticed it was slowly dropping down to my normal range of 100-110/65-75. Nickie was the primary nurse now checking on me and she had my husband brought back. We sat there for the requisite two hours, again chatting and playing on our phones between Nickie’s checks. Then she finally said I could go home. I first had to pass a blood pressure test. One final test while I was reclined on the bed – 113/72; next standing up, 121/79, and then sitting on the side of the bed, 111/73. All good. I had all my admonitions of what to do and not do, and I was able to get dressed while my husband went and got the car to meet me at patient pick-up.

A couple of volunteers took me down to the patient loading zone, and away we went.

We had noticed that my betadine wash was still left behind all over my neck, chest, and left arm. Nice, I can’t shower, and I now have this lovely orange
“tan” on my upper body. And it wasn’t even… splotchy. Can’t pull that off in public… sponge bath awaited me once I was home.

Now, this is the point where I thought everything was fine. I’ve had normal conversations for over two hours now. My BP was coming along just fine, I could walk without issues, and turning didn’t make me dizzy. My boss had called earlier in the morning while we were waiting and asked if I could pull some data for him, sure no problem. I can get you that once I’m done here. I opened my laptop, logged in, and opened the systems I would need to start working on getting him the data. I texted my boss to confirm the data he wanted while I was pulling it up, and damn, that did not work right. What was I thinking? I’ve got the wrong stuff pulled up. I have email open. Now texting can be interesting sometimes, so I didn’t think anything of the fact that I had to retype/delete quite a bit while I was putting together that quick text. But email, now that was a whole different story! I reset my search criteria to start the data pull for the boss and then tried responding to some emails. I couldn’t type for the life of me! I had to pick each letter slowly to make a coherent word.

Just as my boss texted me back that the data could wait until Monday, I had the first set of data I needed to get him what he wanted. I dumped it into Excel and then proceeded to butcher it. What? Why did I do that? Undo, undo, undo. I tried that again, and oops, I deleted the wrong thing. Why do my fingers not work?

See the text from the boss and agree that this should probably wait until Monday. I can’t type for the life of me. I don’t understand. I’m coherent! I go back to the original email he sent me and respond to that to confirm my text message that I will try this again on Monday, evidently I am extra “relaxed” still. Took me seven tries to type the word relaxed correctly or even to the point that spell check understood what I was trying to type.

It was shortly after that when I hit the wall. All of a sudden, I needed a nap. Water, a small bite to eat, and a NAP. I fell asleep on our chaise lounge and slept there for about two hours. When I woke up, yeah, the Lidocaine had worn off. Ok, that kind of hurts. I can take Tylenol. Sleeping will be interesting, left side sore from the port placement and right boob hurts if too much pressure is placed on it. This is going to be a fun night.

Life is moving closer to Kickin’ Cancer’s Ass!

Wednesday October 4 – Last day in the office.

My medical leave officially starts on Friday, but tomorrow I have to report to the hospital in the morning to have my port installed. They use a local in combination with a twilight drug, so I can’t go back to the office after the procedure is completed. Today was my last day in the office.

It was bittersweet. I received flowers and a box of chocolates from the company, and some really nice cards. My boss said I had to eat the chocolates, I could not leave them behind for him. I keep my boss supplied in dark chocolate. Even told him I’d send my husband down from time to time with a resupply.

As the girls in the office started leaving for the day, the would stop by my office to give me a final hug good bye and reaffirm their faith in me to kick cancers ass.

They all know I am still going to be helping as I can from home, mostly helping with research on issues and systems maintenance. But it was so heartwarming to have them all go out of their way to wish me well and add their words of encouragement to the battle ahead.

I am so thankful for the people I work with. I know I have been blessed in this area. I cannot even imagine being able to do this without their support and the constant reminding me that I am strong and can do this. They are a fantastic group of people and I love working with all of them.

I arrived home to find a Cancer care box had been delivered courtesy of my cousin. She purchased it through Choose Hope. It included a T-Shift, soft blanket, and warm fuzzy socks, a water bottle, a note book, a magnet with the a reminder of what Cancer Cannot Do, hand sanitizer, moisturizer and lip balm and all with a tote bag to carry it all to Chemo treatments.

On top of that, she told the family how to order personalized shirts to reflect their support of me through the Komen Foundation.

If I have to do this, at least I know I have the support of so many! My family is great at this, so supportive and keeping spirits up. Getting in with their sleeves rolled up to do what needs to be done. And then there all the wonderful people I’ve met over the years, between work and Ren Faire. I have made some really great friends and all of them have been and continue to be so supportive.

I am feeling more in control the closer I get to treatment starting next Tuesday. I am grateful every day for all the wonderful people in my life that are rallying around me to cheer me on and help keep me strong through this process.

Between all these wonderful people, my husband and my kids, I will make it through this metamorphosis and be something beautiful on the other side.

Speaking of husband, he had previously decorated our bathroom mirror with my daily reminder that this is treatable, curable, survivable and temporary.

Life is moving forward.

Saturday, September 30 – Disneyland Finally

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life is picking your battles

Friday September 29 – Chemo School

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

If we have any questions, we call in.

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

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

Life is expanding our medical education

Thursday September 28 – Last appointments scheduled

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

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

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

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

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

Life is “hacking” of my hair

Tuesday 9/26 Text Message exchange with a cousin

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

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

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

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

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

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

Today was results day.

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

It is an invasive ductal carcinoma, grade III

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

It is early stage, 1 or 2.

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

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

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

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

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

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

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

I have been referred to support groups here as well.

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

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

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

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

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

Thanks for the information! (Kissy face)

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

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

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

All my love and feel free to text anytime!

Met with the Oncologist yesterday:

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

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

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

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

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

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

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

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

Part 1:

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

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

Part 2:

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

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

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

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

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

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

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

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

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

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

Thank you!

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

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

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

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

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

you never have a family history before correct?

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

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

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

Gotta keep the humor man!

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

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

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

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

Of course

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

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

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

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

Oh, ok. Totally misunderstood that then.

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

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

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

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

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

….

you’re more than blessed

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

Life is finding the humour in a deadly situation

Tuesday September 26 – Support Group

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

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

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

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

Every one of them has opted for reconstruction.

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

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

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

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

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

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

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

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

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

Monday September 25 – Oncologist

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

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

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

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

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

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

Part 1:

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

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

Part 2:

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

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

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

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

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

Life is preparing for battle