Hubby gave me a choice of picking my “Last Supper” before Chemo day. I chose a restaurant that specializes in fish. They had Columbia River King Salmon, yum! Hubby chose sushi.
Ran into an old friend out with his boyfriend and a friend. “W” asked how I was doing, best as can be expected. Then he asked hubby, his answer “I’m fine, it’s not me with cancer!” Thank goodness “W” knows us and our humor. He was still a little shocked that hubby would say that in front of those he didn’t know, but that is why I love him. The dry wit gets me every time! It was good to run into “W” the night before the first Chemo treatment.
Port insertion site is not as sore and tender as it was yesterday, I think by tomorrow I can handle it being touched by someone else.
I received the email notice from Councyl, the company that is running my genetic testing. Results are in, I just have to log in to get them… I also have the ability to schedule a consultation to review my results with an on staff counselor or I can schedule an interview with a Certified Counselor, but that is only during specific times.
Hubby and I discussed, we will look at these results together, tomorrow. I don’t know which is more nerve wracking, not knowing or knowing… And that little bubble of anxiety just expanded a little bit.
I’ve been reading a book – Dr. Susan Love’s Breast Book. I’ve decided I need a physical copy of the book. Makes it easier for me to highlight and find those highlights again. Just not as adept with that on my Kindle as I am with a physical book. She also suggests joining the Love/Avon Army of Women. I’ve added the link to my list for those who are interested. Their mission is to connect women and men across all backgrounds and ages to solve breast cancer. They need a great cross section of people, those diagnosed, those with minimal to no risk and those at high risk. Join me in helping this effort to end Breast Cancer.
I’m thinking of adding a page specifically for all of you to add stories, quips, things that inspire you. It can be anything you want to share. Just know that if you post a comment to this page if I make it, it will be made public. Let me know what you think.
Tomorrow can not get here soon enough, and yet, I still want to wake up from this nightmare and have it just be that, a nightmare.
Life is on hold, but I can feel it moving ever so slowly to getting better.
Friday was follow up blood work/appointments. I was very sore from the minor surgery the previous day to have my port placed. We packed our suitcase and loaded up the car for one final trip up north which happened to be perfectly timed. Our annual weekend trip to my parents house in Foster City to a trip to one of our favorite wineries Fall Members Event.
Saturday had us up early so we could leave parents home by 9 AM for the drive to Napa Valley for our afternoon spent tasting the new releases and some of the old favorites from Schramsberg. Dad had been up and getting ready when his back fell out. When we walked into the picture dad was not doing so well, and was planning to stay behind to rest his back. We got him set up with a heating pad, Aleve, water, juice, his iPad and the cat. I then texted my little brother to keep an eye on him while we went to Napa without him. Dad promised to call the doctor Monday as evidently his back has been bothering him for about a month now.
Despite missing dad on this trip, we still had a grand time, sampling the great foods that local (and some not so local) producers and restaurateurs provide – Oysters on the half shell (freshly pulled from the water that morning, one of my faves), poached eggs with caviar and cream fresh, Walnut Shortbread with Mascarpone and apple. Duck Prosciutto, Pear and Cheese. Foie Gras Terrine (stepmom’s favorite). Locally sourced Salami’s (Genovese and Coppa!) and Beef Carpaccio to name a few. All were paired with specific wines being offered by Schramsberg.
I also love the SWAG – Hats, shirts, jackets, etc., also offered from Guest Services. I found a canvas wide brim hat in a color I do not have, a raffia Fedora style hat and a very soft wool poncho/wrap depending on how you want to wear it. And of course we did get a few bottles of wine.
We did have the opportunity to have dinner with my little brother that lives in the bay area and nephew who was available as well. It was good to see some of my family one more time before we hit the treatment schedule hot and heavy.
Sunday we drove home and opted to take Hwy 1 from Half Moon Bay to Carmel, and at my fathers suggestion, take Carmel Valley Rd. back over to 101 instead of backtracking to Monterey to pick up 68 back to 101. It was an epic adventure… It took us almost 5 hours to get from the parents house to King City. This is normally about a 2 hour drive. In the process of completing this drive, a bag of chocolate chip cookies that hubby had stashed in the back foot well for easy retrieval was reduced to crumbs due to the rough road conditions. Hubby had me cracking up when we finally turned onto 101.
“It’s closer to go back to the parents house and try again tomorrow!”
“Who knew you needed a spoon to eat chocolate chip cookies!”
I love these moments with him. He made me laugh so hard, and made the port installation area hurt so much, but it was a good hurt. I would rather is hurt due to him making me laugh than just because I moved wrong.
Bandages came off Sunday night once we were home, doesn’t look too bad. Still very tender and I am a bit worried about having a nurse touch it for my treatment. I sure hope this tenderness clears up, a lot, before Tuesday morning! There is slight bruising that covers a patch about 3″ x 6″ from the surgery, with more of the bruising being really visible on the bottom half.
Feeling closer to my normal self as I get closer to starting treatment. Finding my center again. There is still some anxiety, but that is more centered around not knowing what my reactions will be to chemo. It’s not as urgent or full as it had been just over a week ago. Now, my biggest concern is wondering what to stock in the fridge for this week so I can plan the grocery list.
I debated about sharing the following little note I received via IM, but it touched me so much I had to share. This came from a friend and colleague. I have always admired her strength and her leadership abilities.
Hi Kim, I’ve been reading your blog and so glad you are sharing your feelings and experiences. You are strong and brave and just may be my new hero. But my heart also hurts for you, so much. Please know that you are cared about and thought of often. Xo
I was humbled and honored by her simple and encouraging words.
I do love all the wonderful people I’ve met and the ones I call my friends. I am so blessed to have so many loving and caring people in my life. I told her that her generous and kind words help me so much in finding my center again. Help me face the coming year of metamorphosis with determination, bravery, humor and love.
To all who read my blog and send me such kind words and encourage, you all have no idea how much this means to me and I can’t even to begin to express my gratitude. The words are just not enough. Love and peace to all of you.
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.
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.
I had my annual physical in the morning. My primary care physician was so sorry I am dealing with this. Later, I realized she never asked me about getting my annual mammogram. The left breast has only had a recent MRI. I wonder if that counts.
We talked about my sleeping problems, and I told her the Oncologist prescribed Ambien, but I’ve only used it a few times. Are there any other options? She reviewed some and suggested Lunesta, but the same issues with that as Ambien mean it should not be taken consistently for an extended period of time. I told her I would think about it. She gave me a handwritten Rx, just in case.
I asked her if I should see a dietitian, but she wants to wait and see how I do on chemo before we go that route. I told her I worried about my weight loss and our goal. She said we would cross that bridge as we came to it during chemo. I still want to reach my goal weight. I am still not comfortable in my body. And that is besides The Lump.
We talked about everything that had happened in less than a month, how I fell apart from my first Support Group. She asked if I was going to go back. Well, yes. Just because I was overwhelmed last week doesn’t mean I can’t try to find some value in this. My husband found value in his support group when he didn’t expect to connect at all. I can do this.
We went over my blood work, Thyroid was a little high, I told her I actually forgot which day I was skipping a pill (my dosage for several years now has been 6 days a week, one day off). I messed it up the week before my blood draw, and I have a feeling I took more than 7 pills that week. It’s been a bad month. I swear I will be better, and I have already double-checked my dosage for this week after I realized on Sunday that I had taken a pill the night before, and I had one in my hand for my “day” pills.
Then, there were some white blood cells in my urine—not a lot, and nothing grew when the lab tried to culture any bacteria. I told her the lab I went to had no antiseptic wipes. I washed as best I could with a paper towel, soap, and water, but… So yeah, I don’t plan on going back to that lab again. I was surprised that for clean catch, they had nothing!
Everything else on my labs was fine.
We agreed that I should increase my D3 to at least 2000 IU daily instead of just 3x weekly. She said I could go higher.
I forgot to ask her about a medical cannabis card, just in case. We’ve (husband and I) talked about how if chemo is really rough on me, this is an option. Just the cannabis oils or edibles. Really not interested in smoking!
I went home, did some work, and then had to turn around and return to have the echo-cardiogram. It’s the same medical complex. I told them I’d had at least two echoes previously at Torrance Memorial, but they said I had to do a complete baseline echo because this was my first time in their office. They didn’t even have a gel warmer! And the poor ultrasound tech had to sit on a metal folding chair. I was not all that impressed with that office, but oh well. I have a new baseline echo-cardiogram on file.
I went back home and got back to working. I worked straight through till a little after 5 pm when we had to leave for our respective Support Group meetings.
We got there a little earlier than we anticipated, so we took a walk around the pier. Husband asked me if the absolute worst should happen in this process, and we have to plan for my death, have I decided what I want done? Well, yeah, we’ve discussed this before. I want direct in-ground shroud wrapped burial. There is a place north of San Francisco that does this. He joked that what, I just fold you into the car and drive you up there? I told him I had the information before, I just don’t remember where I put it so I will pull it up again and create a file.
Then he asked me about any type of service… Wow, we’re really discussing this, right before Support Group, where last week it broke me. Ok, I can do this, it’s life. I think about that part, a service, or life celebration or whatever. I don’t know, but I think if this does go south, I think my family will need something. There will need to be a celebration of life. Then he asks me where? Do I have to do this up North? No, No, it needs to be done here. The kids are here, you’re here, most of our friends are here. The rest of the family will just have to be inconvenienced this time instead of us. They have to come to you and the kids. You and the kids should NOT have to go to them to celebrate my life and the fact that it ended so much earlier than I ever planned. Then my husband asked me if he would have a fight with my mother over this. I told him I don’t care what she wants, this is about you and the kids and what I want. He said good, if he had to, he’d tell her to F off. He has my permission. If it comes to this, he gets the easy out. None of them (husband and kids) should have to travel because a celebration of life service for me is not convenient for the rest of my family.
Then we talked about him, I’ve always known he wants to be cremated, but he’s never said what he wants done with his ashes. He said I could do whatever I want with his ashes. Put them in a urn and keep them on a shelf, scatter him in the waters at Disneyland (which they don’t allow, but I’d find a way I think). He wasn’t sure about any kind of service or celebration. He thinks no one would attend but me and the kids.
We finished our discussion before we went in for our Support Groups.
I did admit to mine this week that I came out of last week totally overwhelmed and broken. They were very glad I came back.
This week went much better. I’m still pissed that I’m going to loose my F’ing eyelashes, but I can deal with it if I have to… They were all very supportive and understanding and validated my feelings of being angry about the damn eyelashes. I know it’s a stupid thing to be hung up on, but everyone’s got something, right?
It was a good night, and despite the apprehension of the unknown, as everyone is different on chemo, I feel better prepared now, and more in control. My dragon is still there, lurking, but does not have the same hold it had just a few days ago.
Today, we met the surgeon our care coordinator has chosen for me: Dr. Madorin. She is petite, nice, understanding, patient, and straight with the facts. She felt The Lump and agreed it might be swollen due to the biopsy, which is probably why it hurts.
She confirmed everything that has been told to us to this point. Based on the information we have, lumpectomy is still the best option. She said that MRIs are very good at detecting lymph node involvement, and none was detected.
I told her I was worried it was growing fast. She agreed it could have grown a little larger in the past month, but she thought it was more because it was inflamed from the biopsy.
We talked about bilateral mastectomy and referral to a plastic surgeon so I can discuss my options and questions with him/her about reconstruction or breast lift with the lumpectomy to make both sides match.
She said chemo would shrink The Lump, and she has even seen them shrink to nothing. But she warned that even if that happens, the surrounding tissue would still need to be removed to ensure clean margins. She said I may even notice a change after my first cycle.
We talked about lymph node involvement. I was under the impression that if by the time surgery happened in 5 months or so, my lymph nodes did show signs of cancer, I would have to have a mastectomy. Dr. Madorin said no, she would make a separate incision in my armpit area and take the lymph nodes from there. Two scars, but I’d rather have that than a mastectomy if I can avoid it.
We talked about surgery and how I felt a mastectomy or bilateral mastectomy without mitigating factors suggesting these steps should be avoided. Why would someone want to put themselves through that much surgery if it really is not necessary? She agreed, and she told us that studies show there is no increase in recurrence with a lumpectomy vs. mastectomy.
If genetic testing results come back negative, I am to call her to schedule a follow-up 6 weeks prior to the last chemo treatment so we can start the scheduling process for surgery and reconstruction/lift with the plastic surgeon.
If genetic testing results come back positive, I am to call her to schedule follow-up 8 weeks before the last chemo treatment so we can start that scheduling process for surgery and reconstruction if I decide to go that route.
Still so many variables. Taking my cleansing breaths and reminding myself, one day at a time. Slowly, that grey dragon of anxiety and fear settles and fades. It’s still there, but not as strong. It doesn’t try to choke me as often, stop my heart, squeeze my innards.
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.
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.
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….
