Hey Alexa... Play Carly Simon "You're So Vain"

I will be completely honest here. When I was told that I had cancer, the first thing I asked was if I would lose my hair. Was it a bit vain, yes, but there was so much more to it. Having hair made me look "normal". When you don't look sick, you don't get a million questions on how you are doing and feeling. When you have hair, you can go out and not get weird stares. People won't talk behind you back and try to figure out why you don't have any hair. To be honest, I had just gotten my hair where I wanted it. I loved the color and the length. So, when they said that yes, I would lose my hair I started looking into ways to keep it.

The oncologist doctor recommended looking into Penguin Cold Caps. I checked the website out and spoke to the rep for the system, but I wasn't sure if it was what I wanted. To rent the system was expensive. For me it was going to be $450 per month. I am going to be doing chemo for 18 weeks, so I would have to rent the system for 4 and a half months. Was keeping my hair really worth $2,250? The rep said that Bay Area Cancer Connections might have the system available for me to borrow at no charge. This could be a possibility, but I put on the back burner because I was dealing with the millions tests that I had to do. 

One evening after all the tests had dwindled down, I mentioned to one of my dearest friends that I was thinking of using the cold caps and needed to check with Bay Area Cancer Connections about possibly using the system that they had. Low and behold one of her good friends was involved with the non-profit and she would check in with her about me using them. The next day my friend called to let me know that the cold caps were mine if I wanted them. I was completely amazed and shocked that she was able to get everything arranged in such a short time. The only catch was that I would have to pick up the system from the gal that just finished using it. Not a problem! I can handle that.

The next day I took off to meet the gal that just finished using the cold caps. I pull up to her house and see a medium sized cooler on the porch. Well duh Dawn! How else are you going to keep them cold? Then the gal opened the door and I had to control my shock. She had very short and very thin hair. Hmmm... what gives? So, we started talking. It ended up that the chemo regimen she just finished, was the same that I was going to start. She gave me some pointers on what to bring. Told me the best places to find dry ice for the cold caps and then warned me that just the dry ice alone would cost me about $150 per use, or approximately $2,400 for the duration of chemo. She then gave me the run down on wearing them. I would need to put one on an hour before I started chemo, switch to a cold one when I was got to the infusion center and probably have to switch out while I was there, and then wear one at home for another 3 - 4 hours. Someone would have to come with me to each chemo appointment and help switch them out. Oh and did you know that with the type of chemo you will be getting you have a 15% chance of not losing all your hair. What?!?! Even following all the instructions on using the cold caps her hair fell out so much that she ended up shaving her head 3 weeks into treatment. At this point my head was spinning with info. We then parted ways with her saying to reach out if I had any questions. I loaded the cooler into the car and headed home.

By the time I got home I had major doubts on using the system. I had no clue how much all the doctor's bills were going to cost me. How can I justify spending $2,400 on dry ice if I was just going to end up shaving off all my hair anyways? How can I ask family and friends to take time out of their schedule to hang with me at my chemo appointment if the system wasn't going to save my hair? So, I talked to my hubs, my mom and my dear friend who got the system for me and at the end we all decided it wasn't worth it. I let the director of Bay Area Cancer Connections know and she came and picked it up to move it on to the next gal that might be able to use it. 

The time for my first chemo appointment came and I went. I asked the nurse how it would have worked if I was using the cold caps since they aren't allowing visitors in with patients? She said that they do make exceptions for cases like that. She then thanked me for not going the cold cap route. The infusion center is crowded as is and adding in the extra person and cooler makes it a full house. She then gave me the advice to cut my hair. She said it will make things easier as treatment progresses. Deep down I knew that she was right. My hair stylist was so excited to cut my hair. I sat and ugly cried as she took the first cut. I knew that it was the right decision, but sometimes the right thing just sucks. My hair stylist also gave me a few tips... No more blow drying my hair straight, use natural products and wash it 2 times a week max. This should help reduce stress on the hair and hopefully keep it around longer. 

My hair stuck around until after the second chemo session. At first it was like I was a cat or dog shedding in summer. At that point I also decided that we should go look at wigs. San Mateo still has an actual wig shop where you can go in and try on wigs. The owner was super helpful and knowledgeable. We went over the different types of wigs and the average life span of each. I then tried on a bunch of different styles and finally found a winner. The best part was he had it in stock the color that looked best on me, so we were able to bring it home that day. If you are going to go the wig route, don't wait until the last minute like I did. It can take up to 10 weeks for a wig to be produced, so give yourself some time. 

When the hair loss got to the point that I filled a small trash can with my hair in two days, I told the hubs it was time to cut it off. I still had quite a bit left, so I didn't want to shave it completely off. So, he found the number 8 blade that would leave me with about an inch or so of hair and took off what was left of my cute short hair do. As much as I hated to do it, it felt good to not have clumps of it in my hand. The best part is it feels so soft!

Now while I have this great wig, I'll be honest I don't wear it every time I go out. It is pretty, but it's hot! With it being summer in California I'm switching between a scarf like cover and the wig. It all depends on where we are going. I will also give my friends a 5 star review in all of this. They don't give a damn what my hair looks like and if anyone questions my look they are the first to come to my defense. 

I guess I'm not as vain as I thought I was. Well, at least I know the song wasn't written about me. 

After 3 very long weeks the results from the HER2 test finally came back. It's negative! A dance of joy was done. Why all the hoopla you ask? Having a negative result means that I will only endure 20 weeks of chemotherapy instead of a year. At this point I'm finding joy in the little things.

The chemotherapy plan is relatively quite simple. For the first 8 weeks I will be infusing Adviamycin and Cytoxau (A and C) every two weeks for a total of four doses. Then for the remaining 12 weeks I will infuse weekly Taxol (T). The A and C have been known to put stress on the heart, so that is why I had an echo of my heart done. A and C are also known to cause nausea, fatigue and low blood counts, so I will be pumped full of steroids and heavy-duty anti-nausea meds that will last about 2 days in my system. I have also been given a selection of anti-nausea meds to have at home. The T is the lesser of the evils. When I start the T portion, I will be infusing a lesser amount, so I will I have less side effects. Some people have been known to develop neuropathy while infusing T, but if it happens it is temporary, and the number of weeks to infuse T will be reduced. It is all a calculated dance.

The oncologist wanted to get the party started as quickly as possible. I was given the news of being HER2 negative on a Tuesday and started chemo that Friday. In a way it was a good thing. No time to over think, only time to start the party. The only drawback was I only had two days to get my "chemo bag" ready. The A and C infusions take a minimum of 3 hours from start to finish, so having stuff to keep you entertained and snacks are important. Hard candies are essential to pack as well. Some of the pre-meds can create a nasty taste in your mouth, so having some caramel candies definitely help. Some people pack blankets and socks, but the nurse told me that they have blankets there that they warm, so I left those at home. I ended up bringing my laptop, my tablet, earbuds, snacks, crackers, caramels, lip balm and tissue. Oh, and my large travel cup filled with iced tea. Gotta stay hydrated!

The hubs had hoped to go with me for my first treatment, but due to COVID the treatment center isn't allowing guests to come with. As my time for my appointment got closer my nerves started getting out of control. By the time I arrived my blood pressure was sky high, and it took everything that I had to remember to breathe. The staff at the infusion center were great through it all. I was able to get a semi-private room that I only had to share for about 20 minutes. The nurses made sure to explain everything, so I was super comfortable with what was going on.

This was the first time that my port was used. The site was a bit tender since it was still healing. If you get a port, make sure they prescribe you numbing cream to use before they access it. You don't need much, and you rub it on about 30 minutes before. Add a bit of ice about 5 minutes before and you won't feel a thing but a tiny prick. I was so glad that I had a port after the infusion was over. It made everything so easy. 

As my infusion was wrapping up the nurse brought in a little "treat" for me to wear home. It was a Neulasta Onpro. You might have seen commercials for it. What it is, is a small wearable injection device to boost your white blood cells. It is slightly bigger than one of those pods you can use to wash your clothes or dishes. It has an adhesive to stick to the back of your arm, and after about a 1 minute of being placed on your arm, a tiny needle is injected into you. It feels like someone has just snapped a rubber band on you when it is released. Approximately 27 hours after it was applied the device will start to administer the medication. It takes about 45 minutes for it to be absorbed into your system. The nurse gave me a booklet explaining the medication, as well as a note as to when I could take the device off. Now because it is placed on the back of my arm, I needed some help getting it off. Other than that, it worked like a charm.

The evening of my first round of chemo was relatively normal. We went and had Mexican food for dinner, since I was told that spicy food wouldn't be my friend very soon. The only negative is I was still waiting for one of my medications to arrive, an anti-anxiety med that would help me sleep with all the steroids in my system. Unfortunately, the pharmacy failed me and did not deliver the meds before they closed. I ended up being awake until 3am. Ugh!! I can at least say that I read a good book, or two. The meds finally arrived Saturday. I took a pill once it arrived and had a good long nap. I felt well enough on Saturday to join the family for dinner out, and even ate a good amount of food. Sunday I was starting to feel the steroids wear off, but I managed to get out and see friends for a BBQ. Then Monday arrived and I was spent! I spent the day holding the couch down. Reading, watching mindless TV and napping. The nausea started to kick into high gear as well. Thank goodness for anti-nausea medicine! Nothing sounded appetizing, but I was able to eat and keep it down. That is all that mattered. 

The rest of the week the nausea came and went. The nurses said that at the first sign of feeing nauseous, to take a pill, so that's what I did. Staying on top of it was key so I could continue to eat, even if it didn't taste like it should. As the week went by my level of heartburn increased to insane levels. I already take medication for acid reflux, so it was pushed to the limits. It was odd what would flame the heartburn. There was one day where oatmeal and a glass of water sent me over the edge. That is when I call the doctor's office and was given an additional medication to help. It has helped tremendously! The one thing that I will keep saying is you must advocate for yourself! If you don't speak up, the doctors and team will not know if something isn't working. Make friends with the people that work at the front desk and answer the phone. If you are nice to them, they will be nice to you and make sure that you are taken care of. 

Before I knew it, it was time to prepare for round two. Two days before my scheduled chemo infusion I had to go in for some blood test. This was my first time using my port for a blood draw. I was so impressed with how fast it went! What was equally impressive is that the results were back by that afternoon. My white blood cells looked great (thanks Onpro!), but my red blood cells dropped quite a bit. I'm now trying to increase my iron intake and we will monitor the numbers. Hopefully it will plateau. Fingers crossed!

Going in for my second does was a whole lot easier. My blood pressure was normalish and everything went well. My appetite was back that night thanks to the steroids, and I took full advantage of it. Having all my medication was a big plus too. About a half hour before bed I popped one of my anti-anxiety meds and was able to sleep for about 5 hours. It wasn't all night, but way better than the time before. 

And now the cycle starts all over again....

Okay... I have breast cancer. Now what? I had to wait five days from being given the news, until I was able to meet with the team of doctors to determine what is next. This time was undaunting. I spent a lot of time on the phone. First calling my mom and sister breaking the news. Then I had to calculate the time difference from California to England so I could call my other sister and my dearest friend. More calls and text to other friends and family. I figured if I had to wait again, I was going to build my support group up. 

D-day arrived and the hubs and I went off to meet everyone and get a game plan. First up, the surgeon. She had a nice page of info all filled out for us. Very helpful! She told us that the tumor was about the size of a golf ball. The good news it all seems to be in tack, so we could do a lumpectomy and save the breast. I was surprised when she said that I would do chemo first, but hey they are the docs. The thought is by doing chemo first it will shrink the tumor. Then, when they go to do surgery there will be less of the mass to remove and hopefully less scaring. She also let me know that I will be having a "quick" surgery to have a port put into place. I will need to have tracking markers inserted onto the tumor and infected lymph node as well. Oh, and we should do an MRI just to make sure that the cancer hasn't spread to the other side. Oh goodness, I didn't think of that!

Next up would have been the chemo doc, but one of the other docs in the practice was on vacation, so she needed to stay on-site. An appointment to meet with her was scheduled for mid-week. What's another few days anyways??? The radiology doctor came in and briefly went over her part. After chemo and surgery were done, I would do 6 weeks of radiation, 5 days a week. We left with our brains on overload, but still so many unanswered questions.

To help kill the time between doctor appointments I had a breast MRI scheduled for the next day. This was definitely an adventure. Not only would the test show if the cancer had spread to the other side, it would also give the docs the ability to see if other lymph nodes, that can be hidden behind the breasts, are infected. The first questions that they asked when scheduling this appointment was if I was claustrophobic. Ummm... I don't think so. When I walked into the procedure room, I then understood. I was going to be laying on a board and put into a large tube. In order for the MRI to pick up everything contrast dye would be pumped into me. The tech had to start an IV for the dye and my veins were not cooperating. 5 sticks later we finally had a running IV. Then they hand me a set of ear plugs. What do I need these for? Oh... the entire 35 minutes that I will be in the tube it will be making extremely loud noises. Grand! They then handed me headphones that would also help deaden the sound and allow the tech running the machine to talk to me. Then I had to get situated on the board. I had to lie on my belly with my boobs hanging though an opening in the board. It wasn't the most comfortable position, but it worked. Once everything was in place they started the MRI. Holy cow! When they said it was going to be loud, they were right. I would hate to hear what the machine sounds like without all the ear protection. The sounds that the machine made reminded me of a really bad rave. Just boom, boom. boom. Then there was one part where everything vibrated in addition to the booms. I was like, "Oh joy! A massage!". I was glad to see it over. Now to wait for the results. Mega plus that the results were posted online later that day. The cancer had stayed just in the left breast and lymph node. A few other hidden lymph nodes looked like they might have a bit of the cancer starting to creep in, but the chemo would take care of them.

Now to meet my oncologist, aka the chemo doc. When my original biopsy results came back on June 1 they were then sent out to another lab to verify if it was estrogen negative or positive, and if it was HER2 negative or positive. These results will determine what chemotherapy will be used and how long I have to do it all. It seems that I must like to play the waiting game because all the results should have been back by the time of our visit, but they weren't. HER2 part was taking forever to do it thing and they were having a hard time determining which way it was going. It needed more time. Okie dokie. The doc was great though. She went over both treatments so we would have a clear understanding of the road ahead, regardless of which path we had to take. While we were waiting for the test to come, she wanted a few more tests done. I'm getting to be a pro at doing tests. At least we are moving forward... just slowly.

Next up Port Placement Surgery. What is a port? It is a tiny device that is placed under the skin that runs a line through a vein that goes from my neck to my heart. There is a small box, about the size of a dove chocolate, that is under my skin that they will stick and access my vein instantly. This is needed for two reasons. First is the chemo can be really hard on your veins when done via external IV and can cause a mess of complications. Second is my veins just suck. Every time I need to have blood draw, or an IV done it takes them multiple trys. So, it just made sense to say yes and get it done. The surgery to get it done is really simple. The anesthesia that they used to knock me out was the twilight version. It had less of the nasty side effects and makes the surgery a lot quicker. The downside, my surgery was supposed to be at 11am, with no food or drink after midnight, but it got delayed until 1pm. I was so hungry as they wheeled me in. Surgery happened in a flash (hahaha) and I spent about a half hour in my recovery cubby having some graham crackers and 7up. What sucked was in the cubby next to me a group of peeps were talking about food the whole time! Thankfully hubs got me some soup on our way home. 

After a day to recover, off I went to have the trackers put on the tumor and lymph node. My mom and hubs wanted to know if they could track me via an app now. Thank goodness the answer is no. No one needs to know how many times I'm at Target anyways. They trackers are these little, teeny, tiny devices that only work with a wand that the surgeon has. The hope is that the chemo will reduce the main tumor and lymph node to an unrecognizable mass. She will then use the tracker during surgery to remove the area around the main site and to remove the correct lymph node. To put them in place they numb me up real good, and then use the ultra-sound machine to find the affected areas. Then, instead of pulling tissue out to be biopsied, then inserted the bitty trackers. This was easy, and pretty painless. Oh and I got to geek out with the ultra-sound machine again, so I was happy.

Chemotherapy travels throughout the whole body. So, because of that some precautions have to be taken. The various chemotherapies can put a lot of stress on your heart, which is why an echo of my heart was the next task to complete. The best part... it involved an ultra-sound machine!!! The gal that did my stress test was from Ireland, so we chatted the whole time about the "homeland" and my mom being from there and my older sister growing up there. It was a great experience. She was also able to tell me from her doing the scan that my heart was good, and I would be able to proceed. Yipee, I think.

The last test I had to do was PET Scan. A PET Scan is a full body scan that involves and injection of slightly radioactive dye. The dye is administered via IV. My port was too new at this point to use, so she had to stick me. The gal was good though and got it on the first try. I then had to sit and relax for 30 minutes. No phone, no nothing. Just sit with my nice warm blanket and pillow. Yeah, I took a cat nap. The machine for this procedure was similar to the MRI machine, but instead of a tube it was a donut, and it was so silent. Total test time was about 20 minutes. The results for this test also came later that day. No signs of cancer anywhere else. Thank goodness!

All tests and procedures are complete, except for that HER2 test that can't make up it's mind. So we continue waiting...

2022 was the year that I was supposed to go on vacation. The year where I really got my website going with a following. It was supposed to be the year of fun. It was all going to plan until the beginning of May of 2022. The hubs and I had just finished watching the LA Kings beat the Edmonton Oilers in game 4, round 1 of the Stanley Cup Playoffs and we were getting ready for bed. I happen to look down at my left breast and was taken back by a lump the was slightly popping out. I racked my brain... did I hit myself and just didn't remember? I did a different workout that morning that was arm focused with weights. Was I really that uncoordinated that I hit myself and I don't remember? ""Umm... honey? Do you see this lump that I see?" Yep, he saw it too. We decided to wait a few days before calling the doc, just in case it was really a self-inflicted wound.

Fast forward a week, now we are at the middle of May, and that pesky lump was still there. Which doc do I call? My primary care doc or my OBGYN? I've been tossing around getting a new primary care doc, so I went with calling my OBGYN. They could fit me in on Wednesday. Great! Let's do this. On the day of my visit I took a look to see when my last mammogram was. It was in November, and it was clear. Okay, cool. My OBGYN was actually perplexed as she was checking the lump out. She wasn't sure what to make of it, so she ordered a mammogram and ultrasound of it to answer all our questions. 

I get home with all my paperwork and call to make my appointment for the mammogram and ultrasound. The soonest they could get me in was July 6th! The gal scheduling the appointment starts to read the notes and sees that it is for a new lump. This date will not do. She put me on the schedule for the 6th but promised to call me the next day with a sooner appointment. Just as she promised, she called the next day. Can I come in next Thursday at 8:30am? Sure, as long as I don't have to wear makeup. And another week of waiting begins.

The day of my mammogram and ultrasound my nerves were a bit rocky. At this point only my husband and boss knew what was going on. I didn't want to worry anyone else if this all turned out to be nothing. They did the mammogram first, and it was unpleasant like always. The ultrasound was up next. Now the geek in me found it really interesting how you could see the lump right there on the screen. The doc was pretty quiet the whole time during the procedure. They got me cleaned up and asked if I was available to come back that afternoon for a biopsy. What??? The doc then said that the lump was suspicious and one of my lymph nodes was inflamed so they needed to do the biopsy to see what was going on. Sure, I can come back this afternoon, bonus I didn't have to wait another week. 

When I came back for the biopsy, that was the first time someone actually said cancer. It hit me like a sledgehammer. It can't be cancer, I'm not old enough! The tech assured me that whatever it was, they could treat it and I would beat it. She then changed the subject to Memorial Day weekend. It was that weekend, and asked if we were doing anything. Any plans that I thought about were tossed out the window with the restrictions of healing from the biopsy. No lifting anything over 10lbs, no working out for a week and no showering for 24 hours. The doc that did the biopsy was very nice and explained everything going on. It was all very interesting from the medical side, so the geek in me was entertained. They got all the samples that they needed, bandaged me up and put some ice packs in my bra. Now the bad news... with the holiday weekend it is going to take a bit longer to get the results. The soonest they would be available is June 1st. Did I want to receive them in person at the office, or via phone? I voted for a phone call just in case it was bad news, so I wouldn't have to drive home.

Memorial Day Weekend the hubs and I tried to stay busy drinking wine and BBQing with friends, but it was hard to stay engaged. The days just dragged on. June 1st finally came. The nurse called at 10:30am to let me know that my test results were delayed, and she wouldn't have the results until that afternoon. My nerves were already shot, what is another few hours. She finally called back. I have Invasive Ductal Breast Cancer. The biopsy has been sent out for further testing. I will need to meet with my team of doctors on June 6th to decide/hear the game plan.

And just like that I went from a pretty healthy girl to a girl who is going to have to kick breast cancer's ass.