The end of December was spent in the hospital trying to recover from complications of my new chemo. After my first dose of the chemo I noticed that food that had a normal level of spice would be extra spicy to me. I just figured it was a lovely side effect that I would have to deal with. It’s a good thing that I don’t really care for really spicey food anyways. I had my second dose of chemo the Friday before Christmas. Almost right away my tongue sensitivity increased. I then took a good look in the mirror and realized that my tongue was covered in sores. I learned real quick that drinking ice cold anything numbed up my tongue so I could eat a bit of something mushy. Well, there goes eating a big Christmas feast.
 
Christmas morning, I woke up feeling a bit more sluggish than normal. I got up and pushed through. I just had to get showered, dressed and get the presents to the car. Thankfully, once I sorted out the presents to go with us, my hubs loaded up the car. We were just going to my mom’s house so I could just relax when I got there. With Christmas being on a Wednesday my in-laws decided to postpone Christmas to Saturday so we would get a full day celebrating with each of our families. It’s always fun spending Christmas day with small kids. Even though my nieces aren’t so little now, they still have the magic and excitement in their eyes. When walked into my mom’s we were bombarded with look at this and look at that. No wonder my sister needs loads of coffee. LOL We opened presents, had dinner, or mashed potatoes in my case, and then headed home. In all it was a great day. I started to run a fever that night but didn’t think anything about it.
 
The day after Christmas I was supposed to have a video follow-up visit with my doc, but with the sores feeling like they were getting worse I called and switched it to in person. The minute she saw my tongue she asked why I didn’t call the office. Umm, because it was the holidays? I then got a mini lecture on that I need to let them know when I am running fevers and am having a hard time eating. She had them draw some blood since I was there, but I needed to keep them informed if I started running another fever. I made it through the night before another fever hit. When I called the doctor’s office to report it I was told to pack up immediately and head to the emergency room. Ugh! I grabbed a charger and my tablet and told the hubs let’s go. My mom just happened to stop by right before we got our marching orders, so she came with us.
 
Now, I guess there is never really a good time to be in the emergency room, but it felt like everyone that might have some little, tiny thing wrong with them, was in the emergency room. Finally, I was called back and put into a bed. Then the poking and prodding started and the argument that I have with almost every nurse starts. Do not even think about sticking a needle in my left arm. Having lymphedema means no blood draws, no blood pressure, basically anything that would cause compression, can’t be done on the arm. Due to this my poor right arm gets double duty. Normally my port would be used for some of the blood draws, but it had developed a clot, so they couldn’t get blood return through it. They were able to run hydration and pain meds through it. Thank goodness.
 
We knew that I was going to be admitted, it was just a matter of logistics before I could get moved to a room. Finally, around 9pm, I sent my mom and hubs home. There was no point in the two of them just hanging around waiting for me to get a room. After mom and the hubs left I got to chatting with one of the nurses. Apparently, the number of ambulances that showed up that night was more than normal. Therefore, throwing everything out of sync. About an hour later I was finally taken up to my room.
 
The first night I spent on the floor that was a step below ICU. Meaning I had a ton more nurses to keep me up half the night. They wanted to make sure I didn’t have a staph infection, gone septic, or another long list of issues before they would release me to a slightly lesser floor. I spent about 24 hours there before they were satisfied that they were just dealing with chemo induced neutropenia. What is that you ask? It is when chemo dramatically reduces the number of white and red blood cells that you have. It can cause fevers, mouth sores, chills, body aches and extreme fatigue. At the same time my body was having a hard time maintaining the minimum level of potassium it needs. So, they started pumping me full of antibiotics and potassium.
 
After one night I must have improved enough to be moved up a floor. The entertaining part of changing rooms is being pushed around in your bed and watching to see if the guy driving is going to take out a door. Once I was settled in my new room my hubs and sis came to visit. While they were there one of the nurses came in and it was brought up that a blood draw was going to happen at 4am. 4am?!?! WTH!!! I then asked if they could get the blood clot meds for my port so that we could use it for the blood draw instead of having to search for a vein in my arm. The nurse said that she needed a doctor to put in orders for the meds, but she would try. A little while later the nurse came back in to do her thing and my sister asked what the status was on the meds for my port and the nurse said that she was still waiting to hear from the doc. This wasn’t good enough for my sis and she took off down the hall to the nurses station to find the head nurse and get this handled. Next thing I know the meds have been approved, my port got treated and at 4am it was used for my blood draw. Need something done? Give my sis a call. LOL
 
The next few days were a bit of a blur. New Years happened in the middle of it. The hubs came by and we had an early cheers to 2025 being better than 2024. Finally after being in the hospital a week I was deemed well enough to be sent home with a boat load of new medications.
 
After being home a few days I took a look at my calendar and realized that I was scheduled to do chemo again that Friday. I messaged my doctor right away letting her know that it wasn’t a good idea. I could barely walk to the bathroom without thinking I was going to pass out. One could only guess what would happen with another dose of chemo. She agreed to put off chemo but still wanted a blood draw done to see where all my levels were at. We ended up postponing chemo for two weeks. We decided to resume chemo at 50% the dose, instead of the 100% dose we did the first time. I ran a few fevers and was super nauseous. I could barely keep any food down so I became dehydrated and weak. Again, I messaged the doc that I wasn’t up to doing the second dose. Instead we did a dose of hydration and another round of potassium (labs where showing I was low again). Depending on how I feel I might do another round of hydration on Monday to hopefully keep my feeling well enough to do chemo this Friday coming up. Keep your fingers crossed for me.
 

Dear Santa,
 
I hope you don’t find me overzealous in writing to you again so soon, but I’m in need of a Christmas miracle or at least a good bit of Christmas cheer.
 
You see, I did my PET Scan a few weeks ago and the results weren’t so good. The chemo that I started back in September hadn’t done the job that it was supposed to do. The tumor on my lung has grown a bit bigger, a few of the other spots had shrunk a tab bit, but a few others grew. At the end of the day, there weren’t enough positive results to justify continuing with Enhurtu. To be honest I was a bit glad, cause the side effects were not that kind. The only positive thing that I can say about Enhurtu is I got my eyebrows and eyelashes back and a bit of hair on my head.
 
I did a Brain MRI right after the PET Scan and got some good news there. There are no new spots and none of the spots that were treated in the past have grown. It was nice to get a bit of good news after the PET Scan, but it was still hard to be happy about it. I know I need to appreciate the little wins, but I just feel like I have a black cloud following me around.
 
I started a new chemotherapy, Eribulin, the other week with hopes that it will work. The process of the infusion was a bit different from all the others. Gone are the pre-meds of all the steroids and anti-nausea concoctions. I just have to pop one anti-nausea pill before leaving the house. The best part is the infusions only take an hour of my time.
 
I stayed on top of taking my anti-nausea pills, but the nausea was nothing compared to the last chemo. Just when I thought I was in the clear I started running a fever. It wasn’t high, but just enough to make me concerned. The only thing that my nurse and I could figure out is it’s my body reacting to the chemo since I ran a fever after the first dose of the last chemo. The fever is finally gone and I’m hoping it doesn’t come back with my next dose.
 
Now Santa, you might be asking why I am looking for a miracle. Well, this chemotherapy is the last of the chemos that I haven’t tried. After this one runs it course the plan is to revisit chemos of the past giving them a tweak here and there with hopes that the little changes will give big results. This all scares the crap out of me. I know I need to just let is go and deal with it when it comes, but I kinda like having a plan.
 
A friend of mine has been bugging me to start going to a support group. Not just one that is online, but one that is in-person with local people. I have been dragging my heals on this since I was diagnosed. At first it was because I was working and going to appointments and managing life I just didn’t see having time for one more thing. Now, for whatever reason, I see going to an actual group as admitting it this is all real and that sometime soon something bad is going to happen. In my swiss cheese brain I have decided that if I don’t go, then nothing bad can happen. Deep down I know it would be good for me to at least check it out. If you can’t whip up a miracle, I would take a bit of courage to try something new.
 
Thanks for listening Santa. And I understand if I’m asking for too much. I’ll take whatever magic you can spare.

This last week has delivered one heck of a gut punch. I had a meeting with a Cancer Specialist at Stanford to see if they might have a clinical trial I could try that isn’t being offered at UCSF. The interesting thing is that most metastatic Breast Cancer trials do not include people with metastatic cancer Brain, so finding a trial I can participate in is a bit harder to do. The good news is that they have one trial that is just for patients with metastatic Brain cancer. Yippee! The doctor is going to send all my info over to the team in charge of the trial, and hopefully I meet all the requirements to participate. If I am able to participate, I will have to switch over my care to Stanford during that time. I will miss my “friends” at UCSF, but I’m sure they will still have a hand in my care.

Now for the gut punch… the doctor decided to share with me what he thought my prognosis is. After reading my history, and with my sometimes short positive responses to previous chemotherapies he feels that I have months to a year to live. WTH?!?! No one has given me dates like that before. I know that I don’t have a ton of time left, but I was sure hoping for more than that. Thankfully this was just a video appointment, and our time was almost over. He wants to stay in touch, just in case more trials pop up and I told him that is fine.

Once the call ended, I broke down. How was I going to tell my hubs, my mom, my sisters and friends??? “Hey, I talked to a doc at Stanford and there is a trial, but he only thinks I’m gonna live for a few more months, maybe a year.” Well, it kind of went that way. There was no graceful to say it. Hubs and mom got the news first. I decided to delay telling anyone else until after I met with my normal Chemo Doc, to see what she says. I was seeing her in two days so it wasn’t a long wait.
​
I was silly for thinking two days wasn’t a long wait. I could barely sleep at night but could nap like a queen. My concentration went out the window. Thankfully I didn’t have any big projects that needed my attention at work. Finally, the day of my appointment arrived. The first thing out of my mouth to my doc was “He thinks I only have months to a year left to live”. She seemed a bit surprised. My blurting it out probably didn’t help. She doesn’t agree completely. Months can be subjective. With the additional chemos that are still available to me, granted there are only two after this one I just started, we have a very good chance to make it to the year mark, if not years. We also have the clinical trial to add in and we can always go back and try different variations of past chemos.

Whew! After that we went over a few routine things, mainly asking how my last treatment went and if I had any questions about the next one. They only question I had for her was if I could start planning my next vacation, and she said yes! I don’t have a ton of extra time on my hands, so go travel while you can. Now where to go? The Caribbean is sounding really nice right now.

I know that I should be focusing on being thankful and grateful this time of year, but I’m not sure that is going to be my main focus right now. I need a bit of a reset. Sometime to figure out how to get back to the old me that has no issues with kicking ass and taking names. I need to find some focus, find something that will bring me a bit of joy. I need to find a little extra love this holiday season and maybe have a little extra fun doing things I wouldn’t normally do.

I hope you all have a wonderful Thanksgiving doing whatever it is that brings you joy!

I have been stuck on what to write for my October post. Do I do a full post on Pinktober or do I dive into the whole Metastatic Breast Cancer world? I decided to look at the Metastatic diagnoses a bit more.
 
Just the facts… About 30% of those diagnosed with early-stage breast cancer will develop stage IV. The most common places for the cancer to spread to is the bones, lungs, brain and liver. The hardest part to get across to people is regardless of the location, the metastatic tumor is still breast cancer, it has just taken up residence in another part of my body. There is no cure for Metastatic Breast Cancer. There are a variety of treatments available that will hopefully keep it under control for several years. Most people use many different treatments, either alone, or in combination with other meds, to achieve no active growth and hopefully shrinkage of the tumors.
 
After the facts were stated, the different bits of info I found started getting into the grey area of life expectancy, how to manage your symptoms, learning about hospice care and organizing your finances. My oldest niece decided that I need to be around for the next 30 years, so I relayed that message to my care team. They have taken her wish very seriously and will do their best to make it come true. I spend my days working with seniors, so I don’t need to learn much more about hospice care. My finances are pretty organized, but I know they could be better. Every time I sit down to sort them out, I find something else that I should do instead. It just makes things seem so final. I know that I just need to get it done cause if I don’t the hubs will be cursing my name.
 
After dabbling in the grey area, I dove in and went for a swim. The water was not at my preferred 88 degrees, so I didn’t stay for very long. This one bit of info stuck with me… Many different drugs and combinations can be used to treat breast cancer. However, each time a cancer progresses during treatment, it becomes less likely that further treatment will have an effect. Well crap! While I appreciate the honesty, that is the last thing I wanted to hear right now.
 
So, I climbed out of the pool and then promptly fell down the rabbit hole of life expectancy. In the US about 30 - 33% of women diagnosed with Metastatic Breast Cancer live 5 or more years. The Susan G. Komen Foundation is saying that some women now can live 10 plus years after diagnosis. Then another site I found decided to break down the 5-year survival rate (based on a 2019 study) by area of the body where the cancer spread to: bone 39.8%, lung 10.94%, liver 7.34% and brain 1.51%. Well, crap-a-doodle-do! I don’t like these numbers at all.
So, I climbed out of the rabbit hole and just sat and pondered all the numbers running rampant throughout my mind. Thinking about the numbers and what they mean had me crying. I tried to find a silver lining, so I did a bit more digging. Ah ha! The Breast Cancer Research Foundation (BCRF) is investing $70.3 million, the largest amount in the program’s history, to fund breast cancer research in 2024 – 2025. The even better part is that the funding will cover research for the entire spectrum of the disease. This makes me so happy as metastatic breast cancer doesn’t always get the funding that it needs. Hopefully this research will find something that I can use.
 
Whew! Now to recap what is going on with me. I do my third dose of Enhertu on Friday. The first dose went well, the second dose had me on the couch for a week praying I wouldn’t puke, so fingers crossed that dose number 3 is a happy blend of one and two. I’ve joined a support group for people that are on Enhertu and it is a wealth of knowledge. The large majority of people on it in the group are showing great outcomes. I have had a few issues since I started it. Right after the first dose I started running a 102 fever. We then realized that my cellulitis had begun to flare, which is most likely the cause of the fevers, so I started an antibiotic for it. I then developed a cough that I just couldn't shake. First, I did a chest x-ray, and it looked as normal as it could. I blamed it on the hot weather sending my allergies out of control and went on with life. Well, almost a month later and I’m still coughing, so off I went for a Chest CT Scan. Guess who has pneumonia? Yep, I do. I’m on another round of antibiotics that will hopefully send the pneumonia packing and calm this cough down. The plus side is I’m now counting coughing fits as ab exercises. LOL
 
In the middle of all of that I did a Brain MRI. It came back with 2 spots that are just large enough to be treated by radiation. That will be done Thursday, right before chemo. Hopefully after this the Enhertu will keep the brain tumors under control.
 
There is some very vain, but good news to report… I’m growing hair!!!! I had a 50/50 chance of this happening, so I just figured it wouldn’t. The morning that I realized my hair was growing I couldn’t believe it. I made everyone that I saw that day double check to make sure I wasn’t going crazy. My eyebrows are even starting to fill in, and I have little baby eyelashes sprouting. The hair on my head is about 1/8 of an inch long and super soft. It is coming it a dark brown color too. I am so excited about this!!
 
As October comes to an end I hope you receive more treats that tricks and continue to wear pink, with a bit of green and teal mixed in too.

Okay, I know that fall hasn’t officially started yet, but I’m in need of a refresh. I’ve dug the fall décor out of the attic and am slowly putting it out on display. I’m doing a purge of the closet again, if I didn’t wear it this summer and if it’s older than 5 years it is time for it to go. All this newfound closet space has left me the ability to do one of my favorite things, shopping! I even convinced the hubs to head out to the Gilroy Outlet Stores for some fun in the sun and maybe pick up a few things.  
 
Why the sudden need for a refresh you ask? You see last week I got some news that punched me in the gut. I got the results of my PET Scan and found out that the chemotherapy that I have been on for the last year or so, has officially failed. The spot on my lung that we treated with radiation looks like it has stabilized, but it decided to grow a new friend. The new spot on my lung isn’t very big, but big enough to cause concern. My poor little adrenal glands seem to be throwing a cancer party again. The spots that were there last year have returned. And just to add some extra cancer confetti to the mix, I’ve got spots on my left and right pelvis and a spot on my right collar bone. For the icing on the cake a few of the lymph nodes on my chest wall are inflamed, possibly with cancer activity.
 
 I’m big on listening to my gut instincts. The day of my appointment my gut told me that I needed to prepare for some not so friendly news. Normally the results of the PET Scan is released pretty quickly to My Chart online so I can review it. This time it never showed up. Also, my lower back had started to give me issues, just like when the cancer flared in my spine last year. So, things were just adding up to not being the best of news to come. I did my best not to dwell and to practice mind over matter. I put on a cute outfit and a face of make-up so I wouldn’t want to cry. But, I also tried to prep myself for what could be next.
 
The doc and I have been talking about the possibility of changing chemotherapies for the last few months. So, it’s not like it’s a huge surprise. Trodelvy had been showing signs of not bringing it’s A game, but we had hoped that by increasing the dose and the jolt of radiation to my lung would give it a burst of life. But alas, it is now game over for Trodelvy.
 
The plus side is we already had a plan lined up. Way back when they did the biopsy on the tumor on my lung, we found out that while I’m a still technically Triple Negative, the tumor was producing a little, teeny, tiny amount of HER2. This is good news! Just out of clinical trials with excellent results, were people like me using the chemotherapy Enhurtu. For me to use the drug, it would be considered “off label”, so a whole lot of approvals would be needed. My doc did all of that while we were hoping the Trodelvy would still work. We weren’t sure if the insurance company would approve it, so I started filling out financial assistance paperwork at the same time. Whatever I needed to do to get this medication I was going to do.
 
Well, the stars must have aligned and the day after meeting with the doc I received a call from the insurance company approving Enhurtu. Dance of joy happened, and maybe another shopping trip to celebrate.  Once the celebrating was done, the prep work must start. First up a Echo with Doppler on my heart. Chemo is pretty hard on your body and some chemos effect different parts more than others. The downside of Enhurtu is that is can cause some heart issues. The plus side is they tend to go away if treatment is paused a few weeks. I’ll be doing echos throughout treatment now, so they want to get a base reading. The stars aligned again and I was able to get an appointment this week. After that some basic lab work will need to be done just to see how my red and white blood cells are doing. If all goes to plan I’ll do my first infusion on Friday.
 
In reading the details of Enhurtu it sounds promising, but I’m still nervous. Not knowing how the side effects will affect me has my anxiety going on overdrive. I’m trying my best to focus on the positive and what we do know. Big plus, I will only have to infuse it every 21 days. That means I will have more free time to play, hopefully. Another plus is that it shows signs of crossing the threshold to the brain. Fingers crossed that it will keep these little spots that keep showing up on my brain in check and banishing them. I was hoping to get some hair out of this, but it looks like I’m destined to be bald. Oh well! Good thing I have a nice shaped head.
 
Keep your fingers crossed for smooth sailing on Friday. ​

This week Elle Macpherson, a supermodel from the 90s, decided to announce to the world that she refused chemotherapy, and went the holistic route, after she was diagnosed with breast cancer seven years ago. The first thing I thought was, “You have got to be kidding me?!?!” While I am all for people doing what they feel is right for themselves medical, I find the message that is being projected irresponsible.
 
What seems to be missing from all the headlines is that she had a lumpectomy. Having a lumpectomy is a conventional form of treatment. There is nothing alternative about it. Heck, I even had one before I had to have a mastectomy. While I’m sure the holistic treatments that she did helped with her over all wellness, it was all the very talented surgeons that made her cancer free.
 
What also seems to be missing from a lot of the articles I have seen is what type of breast cancer she had. From what I can determine, Elle Macpherson was diagnosed with Stage 0 – Triple Positive Intraductal Carcinoma (meaning abnormal cells were found in the lining of a breast duct but hasn’t spread) Breast Cancer. This type of cancer is not considered invasive, and almost all women with this type of cancer can be cured. Regardless, any type of cancer diagnosis is scary. The standard of care for this type of breast cancer most likely would have included a lumpectomy and radiation. In some of the articles I have read that she consulted with over 20 doctors about her treatment. The average person who has breast cancer might consult with a few doctors, but I have yet to meet someone who had the means to meet with over 20. It would be nice if Elle, or one of the 20 docs she spoke with, would clarify what type of breast cancer she was diagnosed with.
 
Now, don’t get me wrong, what Elle did worked for her. She is a multi-millionaire and could afford to then follow a specialized targeted treatment that was holistic based. This form of treatment is not offered to the average person due to the price tag of $50,000 to $100,000+ to try and see if it will work for them instead of conventional medical treatment. Her care team included her primary doctor, a holistic dentist, a chiropractor and therapists. Most patients are advised to include some holistic approaches to their care as they have reported benefits such as reduced side effects and improved quality of life, but they cannot replace traditional treatments.
 
I am glad that everything has worked out for her and that she is now in remission. Sadly, that is not always the case for those that follow her path. A 2017 study found that patients with breast or colorectal cancer who had alternative therapies as their initial treatment were five times more likely to die after five years than those that chose conventional medicine. I worry that the misleading headlines and the lack of diagnosis information will be harmful to vulnerable people that have just been diagnosed with breast cancer. I worry that because she is a celebrity, people will see it and decide to go down the holistic route because it worked for her. As a society we tend to idolize celebrities and will blindly follow their lead. I worry that too many women will suffer due to the lack of information being given to the public. I understand that she has a book to sell, but most of the public will just read the articles and not the book.
 
Dealing with breast cancer creates a flood of emotions and the last thing I, or anyone else in my shoes, need is for someone to mention how I should investigate a more holistic approach to my own cancer treatment. What people don’t realize is that I already do. I see an acupuncturist, do mat Pilates when able, and take an assortment of vitamins and herbs, all in addition to traditional meds. I know that people are just trying to be helpful, but to the person that is fighting for their life these types of comments can be off putting. It can be a very delicate balance of finding the right traditional medication and the right holistic approach to make it beneficial for the patient.
 
I do wish Elle well and hope that she remains cancer free. 

Dealing with metastatic breast cancer is a massive roller coaster of emotions. Knowing that your time here is severely shortened is hard to process. For the most part I try not to think about it, but certain things are reminders of what is to come. The passing of Shannen Doherty was a bitter pill to swallow. My high school memories are wrapped around watching Beverly Hills, 90210. Heck, I could sit and watch it now and be taken back in time. I remember when it was announced that Shannen had breast cancer. I was a bit shocked. She was young, mid-forties (sound familiar?), when it was found. It took her fighting cancer for 2 years to find remission, but she did. Three years later Shannen broke the news to her fans that the cancer was back. My heart broke, but I found admiration for her. She continued to work during this time, not letting the cancer get her down.
 
Never would I have thought that I would follow in Shannen’s cancer path. It was two years after she announced the return of her cancer that I found out I had cancer myself. I decided then to take a page from her book and do my best to proceed with strength and grace. It doesn’t happen all the time, but I do try. I remember when I was first diagnosed thinking it was only going to be a 9-month blip on my journey of life. Then, as things changed, it became a year and a half blip on my journey. I always thought that I was going to go into remission. Never did I think that this adventure would still be going on 2+ years later.
 
About the same time that the cancer spread to Shannen’s brain; my cancer did the same. It had already taken up residence in my lung, liver and bones, why not my brain too? I felt a bit bonded to her at this point. I will say that I was glad that my brain progression was nowhere near as advanced as hers, but I understood the fear that she had, because I had it too. Crap, I still have it, because I never know when it could flare again. She ended up having surgery to remove a portion of her tumor, where I have been able to do to radiation to keep it under control. I am also lucky because the chemo that I’m currently on is one of the few that crossed the threshold into the brain and can help with treatment.
 
Unfortunately for Shannen her cancer kept spreading. This possibility causes a lot of anxiety for me when I need to do a PET Scan or a Brain MRI. It is scary how you can feel so good, but have the scan show a tumor has grown, or that a new one has appeared. With tumors growing and appearing out of nowhere, there is also the possibility that the make up of what is fueling the cancer can change. Some people go from estrogen positive breast cancer, to triple negative (meaning no hormones are fueling the cancer) or vice versa. One of the last podcasts she did it sounded like her tumor markings changed. She was hopefully at the end because the change in the tumor markings meant different treatment options. I understand this feeling so much. When they retested the tumor on my lung, I was hoping for any sort of change to help widen my treatment options. Being triple negative leaves you with a very small selection of chemo and immunotherapy treatments. The testing for myself did find a few small changes, so I have a few additional treatment options now available.
 
Shannen’s last pod cast was posted online about 10 days before her passing. In listening to it she sounded good. Hopeful even. I know that there is a possibility that she was faking it. I have done it a million times myself. A little makeup, a lot of Gatorade and some Ensure can help you feel better. She was making plans though. She felt that she had more time to accomplish what she wanted to do in this world.
 
The news of her passing came right before my birthday, and I just had a hard time wanting to celebrate. She had spent 8 years battling cancer, would I make it that long? Being reminded of your mortality sucks. I did my best to try and enjoy my birthday, but it was hard not to slip into the darkness and deal with the what if monsters. What if this is my last birthday? What if the chemo I’m on isn’t working anymore? What if my body is just done? Nobody wants to hear about the what if monsters, but they are there. Some days they are louder than others.
 
After my birthday I did a Brain MRI to check and see what’s going on. I joke and say we do them just to make sure I still have a brain. Chemo has done a number on my memory, so much so that I sometimes wonder if my brain is still there. LOL The scan was finally released to my portal so I could see it. Two brand new spots have appeared. The good news is that they are both tiny. One is even too small to do radiation on. Now to fit a radiation session into my schedule. The downside of radiation is I have to do it during one of my off weeks from chemo. I prefer to spend my off weeks doing something fun, but that doesn’t always happen. I pondered putting off doing radiation for a few months, but don’t want to risk the spots getting too big. I know that I could end up doing another round of radiation on the small one in a few months, but there is always the chance that the chemo might take care of it. I also think that doing the radiation while the spots are still small will help save my brain from becoming swiss cheese. It will just be baby swiss cheese instead. LOL  
 
I’m doing my best to stay positive and find the silver lining, but dang it, it is hard. If all goes to plan, I’ll do radiation the beginning of September. Then I will do another PET Scan mid-September to see if the radiation to my lung worked. I'm sure the what if monsters and the doubts will show up for these scans. They get so loud that I’m unable to ignore them. Sometimes I let them get the best of me and just cry. Other times I do my best to shake it off and do my best to enjoy life. At the end of the day, I want to go out chasing my dreams, not just dreaming. Hopefully I still have a ton of time to make my dreams come true.

The last few weeks have been a whirlwind. If I wasn’t running to another appointment, I was waiting to hear from a doc about an appointment. In the long run a bit of progress has been made.
 
After Memorial Day weekend the docs were finally able to talk about me at tumor board. My chemo doc called to give me a recap. They all agreed that a round of radiation to my lung would be beneficial. Before I could start radiation, they wanted to rebiopsy the tumor to see if anything has changed. Okay… can we do the same test that we did last year? The chemo doc wasn’t sure yet and needed to call a few more people. She broke the news to be during my chemo session that the docs wanted to do a different test. Okay… what does that mean? Well, the tumor is very close to the center of my chest and the best way to get answers is to send a tube down my throat to snip a piece or two for testing. Ugh! This did not sound like fun. There was also a blood test that she wanted to do to see if the results are different from is pulled from the lung. All of this made my head spin. I agreed to the blood test but wanted to talk more about the pros and cons of doing the biopsy. She put a referral in for me to see the lung doc and I started waiting again.
 
The lung doc’s office called while I was in the middle of a nap and was hazy on who I was talking to and what about. Thank goodness for the app that tracks my appointments, test results and payments due. It helped make sense of my crazy notes. So off I went to meet with the pulmonologist. He is a very nice gentleman and took the time to answer all my questions. I had two options. Both were considered outpatient surgery, and I would have to be knocked out for them. The first option he would manually place a tube down my throat into my lung and manually capture the tumor tissue. The second option was using a robot to go down my throat into my lung and having the ability to snip multiple samples. They both had good and bad things about them. In the end the one that involved the robot was to have better results. I was still hesitant about the whole thing but wanted some answers on the tumor. I agreed to move forward with the robotic procedure if we could get it done ASAP. He said that wasn’t an issue, I’ll be added to next week’s schedule. Oh! But first I would need a CAT scan of my chest. CAT scans are easy peasy, I can do that!
 
While I was waiting for all the approvals to go through for the surgery, the approval for the blood test for the tumor was received. 5 tubes of blood were drawn and sent off to a specialized laboratory to work its magic. The more info the docs have to fight this battle the better. If only all my tests were this easy.
 
The weekend happened and I was able to score some time with the bestie. That made going into the week a bit easier. I figured that would get a call Monday morning about scheduling the biopsy. Well really more like being told when I needed to get there and to rearrange whatever else I had planned. First call was from the lung docs office. They are concerned that I haven’t done the CAT scan yet. Well, I can’t do a CAT scan until the insurance approves it. Oh! Let’s double check on that… it doesn’t seem like one was ever put in. Let me do it now. Ugh, okay. Referral went in and was instantly approved and they gave me the number to call to schedule it. I figured I’d better call and schedule it while I was thinking about it. Can I come at 6pm? Sure, why not. CAT scan handled, check.
 
Next the hospital called wanting to schedule my intake call for my procedure on Friday… Ummm what? No one has called to tell me that I have a procedure scheduled. Oh, whoops. The biopsy is scheduled for Friday, with arrival time of 10:30am. Okay, at least it is in the morning and won’t have to fast all day. Can they do my intake call tomorrow? Sure, why not. I Already have two appointments scheduled, what’s one more? We got the intake call scheduled in between the other appointments. Yippee! I finally got some uninterrupted time to get some work done. Yes, I know that I’m crazy to still be working. It is good to have something else to focus on that isn’t all about me.
 
I started Tuesday with a quick meeting with my Chemo doc. I filled her in on the biopsy just being scheduled for Friday. I’m guessing I can’t do chemo and a biopsy on the same day, and she laughed. Nope, I won’t being doing those on the same day. Chemo can wait a week. Not the way I want an extra week off, but I’ll take it. Nothing on my treatment plan is going to change just yet. There are new studies out saying that if the chemo is keeping the majority of the cancer areas at bay, and the spot that is growing can be treated with radiation, the chemo should be continued. There are only so many chemo options so I’m will to try anything. Next up is my intake call with the hospital and that was nothing but boring paperwork done over the phone. They wanted an updated EKG done before the biopsy and I laughed. I was going to the heart doc next. I’m sure I’ll do one there. Get to my heart doc appointment and yep the first thing they said is they needed an updated EKG. And I giggled. Day of appointments is finally done.
 
Wednesday I got a call from the Radiation doc’s office asking if I was available Friday to do a video call with the Doc. If it’s first thing in the morning, I can be. How about 9am?  That will work. Might as well fill the time before the biopsy, where I can’t eat or drink, with something productive. Thursday was a slow day of playing catch up and getting things organized for Friday. Friday arrived and my nerves started to kick in. Thank goodness it was time to talk to the Radiation doc so I could focus my energy elsewhere. The first question was when my next break from chemo was. Due to having to postpone treatment, my next break would be the first week of July. Perfect, she said. That gives us just enough time to do the mapping and get everything ready for radiation. Could I come in on the 24th for the mapping? Sure, why not. We went over the side effects I could have from the treatment and then ended the call.
 
My mom arrived shortly after I was done with the call to take me to the hospital. I don’t know why, but the hospitals are still not allowing anyone to accompany the surgery patient to the waiting room/prep area. I guess it’s a good thing I can entertain myself. The plus side about this surgery is they were able to use my port instead of having to set up an IV. My veins were so happy. Finally, it was go time. I was wheeled into the operating room and was asleep in no time. I then time traveled to the afternoon and was waking up from surgery with a bit of a sore throat and cough. We had a hard time at first regulating my oxygen intake, but after a half hour or so it was all sorted. I finally got a ginger ale, some crackers and the okay to go home. The hubs was waiting for me so I didn’t have to wait for him. We got home, I had some soup, and we just chilled the rest of the night.
 
The next two weeks were spent waiting for results and doing chemo like normal. As the results came in, my chemo doc let me know what was going on. Most of the results were the same as before, except it was now coming back saying I had an ATM mutation. ATM mutation? Am I going to start spitting out twenties? I don’t think that I would be mad at that. LOL Apparently ATM is a gene that they are just starting to do some research and studies on. There is a clinical trial coming up that they hope to get me in to. The problem with trials is they don’t always start when they say they will. So, we will wait and see what happens there.
 
Just like that it was time to start radiation on my lung. I was to go for 5 days. With Independence Day in the mix, it meant that I would go Monday, Tuesday, Wednesday, Friday and back Monday for my final round. Each session went as planned. It actually took me longer to drive there than the actual procedure.
 
I knew that radiation could make me tired, but by Wednesday I hit a wall. I had to work up the energy to do the mundane tasks. There was even a day where I had to take a nap after showering. I also developed a cough during this time. I now count coughing fits as ab exercises. On my last day of radiation I met with the doc. I was prescribed some really great cough meds and told to hang in there. The fatigue will improve with time.
 
Wednesday came and I wasn’t feeling any better, in fact I almost felt worse. I went into the chemo office for my blood draw and the nurse gave me one look and ordered hydration to happen after the draw was done. The hydration treatment worked wonders. I felt a bit like my old self. I was still tired but feeling a bit better. I made sure to keep myself hydrated for the next few days so that I would be able to continue with chemo. I showed up on Friday for chemo and my nurse asked how I was feeling. I told her that I was still exhausted, but at least hydrated. She said let’s get you hooked up to chemo, then I’ll go over your bloodwork. Once she dived into my blood work, she found what was wrong. My hemoglobin had dropped 2 points since my last blood work two weeks ago. This is the first time in 6 months that my hemoglobin was that low. She messaged the doc to let her know what’s going on and almost instantly the doc was at my chair. There is a shot I can do to help boost my red blood cells/hemoglobin, but the only way to feel better faster is to do a blood transfusion. I thought about it for 30 seconds and told her let’s do it. I couldn’t handle feeling so sluggish anymore. The nurses started doing paperwork and making calls and the next thing I knew I had an appointment Monday morning for a transfusion. I cannot speak highly enough of the nursing staff at my chemo office. They go above and beyond all the time.
 
Monday came and I received the transfusion without a hitch. By the time I was leaving a bit of color was back to my face. Now, two days later I feel so much better. Still a bit sluggish but able to shower without taking a nap. Here’s hoping we only go up from here.

May used to be one of my favorite months. It symbolized the start of summer coming, the end of school, three months of “freedom”. As an adult the 3 months of “freedom” no longer applies, but it still is a sign of warmer weather coming. May is also my youngest sister’s birthday month, making it a good excuse to drink margaritas and eat Mexican food during the month. Heck! The Stanley Cup playoffs are in May. Anytime I get to watch the Sharks, or hockey in general, is a good time for me.
 
The last few years May has decided to become a month I don’t look forward to. 2022 was the year I found the lump in my breast and first heard that it is probably cancer. 2023 brought the new tumor on my lung and the spots on my spine. And just like the gift that keeps on giving 2024 brought the tumor on my lung growing, instead of shrinking like it had done for the past 8 months.
 
This was not the news that I was expecting. The plus side is that is the only negative from my round of routine tests. The Brain MRI came back with the larger spots either staying stable or shrinking and some of the much smaller spots disappearing. Yippee! The PET Scan did show that the tumor on my lung grew, but everything else stayed stable. Whew! I only have the bandwidth to deal with one issue at a time.
 
The growth of the tumor on my lung completely shocked me. I have been feeling so good. I rocked it all through Italy. I came home and the next day did a video doc appointment and went for a blood draw appointment. I then did chemo the next day. I would have known if the pesty tumor had grown, but I didn’t. I can’t say that I felt any different at all. Then again, when they first found the tumor, I had just gotten back from walking all over Nashville, and had no clue there was a new resident on my lung. Deep down I know that my good lung is working overtime to make up for the bad one, but I keep thinking that I should know something is going on.
 
This has been a bitter pill to swallow. I knew that this would eventually happen, but I just wasn’t prepared for it to start now. I figured that I would have some clue that my health was declining. In all honesty if the results came back saying I needed to do radiation on my brain, but everything else was ok, I wouldn’t have been surprised. There was one spot that was borderline being large enough last time for radiation. The fact that it has shrunk this time around was good news I wasn’t expecting.
 
With the tumor growth came treatment plan discussions. For the last 7 months or so I have been only doing about 70% of the suggested chemo dose. When they tried to do a higher dose in the past It made me unbearably sick and tired. To have a decent treatment/life balance the 70% dose was selected as it would only make me a little tired and slightly nauseous, and only last 2 – 3 days. My newish chemo doc wants to increase the dose to see if that will prompt the tumor to start to shrink again. I agreed to give it a try, hoping my quality of life doesn’t go downhill. She also wanted to investigate different clinical trials available.  I knew this step was coming, I just didn’t think it would be so soon. There are other approved chemotherapies out there, but the thought is to exhaust the chemo I’m on first and then try a clinical trial and then try an approved chemo. This will hopefully give me the chance to excel on a trial when I get to it, but to have conventional chemotherapy as a backup plan.
 
I few days after I met with the chemo doc, I met with my radiation doc. I had only expected to talk about the MRI results with her in detail, but I had hoped if we had time she would show me the PET Scan results, just so I could see the pictures to go with the results. It was my lucky day. We super briefly talked about the spots on my brain, and then shifted gears to the PET Scan and the tumor on my lung. She reassured my that while yes, the tumor did grow, the volume of the tumor was smaller than when we first found it last year and the volume is still smaller than it was in December. She had me on her list to bring up to tumor board about possibly doing radiation on the tumor on my lung to help slow down the growth. The big stickler is how long of a break would I need from chemo to make it worthwhile? The next question is would the rest of the team agree this is the best thing to do? At this point I’m willing to try anything.
 
These last few weeks have been rough on me. The not knowing, the not having a real plan set really pushes my anxiety over the edge. I know that my posts that are more sunshine and rainbows are more appealing to people, but right now I’m feeling a bit more like a thunderstorm. I promise you to always be honest about how I’m feeling. Right now, I’m scared. I’m trying my best to keep my chin up and think positively, but it is freaking hard right now. So if you see me around and I’m not my perky self, please give me some grace. I’m doing my best.

top At the end of February, after much debate and discussion, I finally got the go ahead to go on vacation! Originally, I had thought that I would only be able to travel within the US, so I had started some research and asked my peeps on Facebook where in the US they would travel. I got some great suggestions and started looking into New Orleans, Chicago and Florida a bit more. Then when I was chatting with my doc going over places to go, I threw out Europe. She gave me a look and then said, “I would be a hypocrite to say no. I love Europe. The hospitals there are well maintained, so if anything happens to you, I won’t be as worried. Can you do your trip in your off time from chemo?” I had no clue if I could or not, but I would figure it out.
 
Now, the funny part is a few days before all of this the hubs forwarded me an email from Travel Zoo about a tour of Italy. It was only 8 days, and they were running a sale. Well, heck! I think this is a sign. I started looking at it a bit more. Trips were planned almost every other week starting in March. I then did a deep dive into my medical bills. Thanks to my generous friends and family I had a little extra cash to pay for the ever-growing stack. For once I didn’t feel like I needed to hold back. This trip really could be possible.
 
I then had the hubs check the vacation calendar at the shop to see if he could get the time off. He could make it work if we were back by the beginning of May. Otherwise, we would have to wait to mid-summer. I checked with my boss, and she said not to even give the office a second thought. Whenever I went, she would make it work. I just had to make my chemo schedule worked with the travel schedule. I did a bit more investigating and found the right dates and they were part of the sale! I waited for the hubs to get home to double check that all the dates lined up and then clicked the purchase button. We were going to Rome, Florence and Venice in April!!!
 
The time before we left for the trip, I was a bundle of nerves. All the what ifs played in my head. The best part was I had less than 30 days to worry about the what ifs. I put it aside with a bit of retail therapy. I needed packing cubes, power adapters, a cute new top or two and a new coat for the trip after all. LOL Before I knew it, it was time to pack the suitcase and get to the airport. My doctor wrote me a note asking the airline for any accommodation they could give me. That came in handy since the hubs and I were sitting apart from each other on one of our flights. It probably wouldn’t have been that big of a deal to not be next to each other, but I am the keeper of the snacks. I’m not sure if the other passengers would have been so willing to pass around the sour patch kids without keeping some for themselves.
 
We finally arrived in Rome, but the suitcase that we checked did not. Good thing all my meds, toiletries and a change of clothing were in my carry on. We filled out all the paperwork and got the airline the address of our hotel in Rome. The suitcase was scheduled to arrive the next day, but they would call if anything else happened. We finally got to our hired car to take us to the hotel. I didn’t care that I was missing half my stuff. I was in freaking Italy! I’ll buy new clothes if I have to.
 
The absolute most amazing site was as we were driving into Rome from the airport. Out of nowhere the Colosseum appeared. Such an amazing piece of architecture sitting right in front of me. Rome is just filled with buildings that are really old and others that are just old. I found it fascinating. I guess it’s one of the downsides of being from California. There isn’t anything that old here. Our hotel was an old building that was transformed into a nice hotel with a few modern touches. I really wasn’t worried about what the hotel was like. As long as it was clean and comfortable I was good. Once we checked in, we dropped off our bags and headed out to explore. I did my best to soak it all in. The first day we were on our own, as the rest of the group arrived at different times. By 4pm I was feeling the jet lag start to kick in. The hubs and I made our way back to the hotel and tried to stay awake. It didn’t work. It was okay though. The next morning, we had an early wake up to meet the group, have breakfast and take off on our first tour.
 
4 days in Rome did not disappoint. We toured the Colosseum, the Forum, Palatine Hill, Vatican City and so much more. We found some cute holes in the wall places to eat, that had the best food, and I wanted to try it all. I had read that Italians didn’t eat breakfast like Americans do. They do it better! Who needs eggs and bacon when you can have cake and cappuccino?!?! Before we knew it, it was time to move on to Florence. On our way there we stopped in Orvieto and Assisi and ended the day with a night tour of Florence. Florence was just beautiful. The next day we saw the city in daylight and then made an afternoon trip to Pisa. We then packed up for our last stop, Venice. First, we had lunch in Bologna and made a stop in Padova.
 
By the time we arrived in Venice I was jumping out of my skin with excitement.  My older sister was staying in Venice at the same time with one of her friends. Neither one of us talked about the trips we had planned before they were booked. I just happened to message her letting her know that we were finally going on holiday and she responded asking what dates we were going to be in Venice. Who would have thought that we would both randomly book trips to Italy and both be in the same city at the same time? It was kismet! The first part of the day the hubs and I did a walking tour with the group and the evening was spent drinking spritz and having a good laugh or ten with my sister and her friend. Who could ask for more?
 
Sadly, our time in Italy had to come to an end. I didn’t want to leave. There was still more pasta, pizza, gelato and wine for me to try. Reluctantly I packed my bag and off to the airport we went. The hubs checked the fitness app on his phone and discovered we did on average 18,000 steps a day. Thank you steroids for giving me the energy to keep up! Our flights home were uneventful. We watched a bunch of movies and I read a bunch of books. 14 hours is a long time to sit in one spot. It didn’t feel that long going over.
 
The day after we got home, I was back to my routine. I had to go to the doc office to get lab work done. Then that Friday I was back for chemo. All the nurses wanted to hear about my trip and were just amazed that I had only been home two days. As my luck would have it I then ended up with a sinus infection, that turned into an ear infection. Three rounds of antibiotics later and I’m almost back to normal. As much as being sick sucks, I would do it all again in a heartbeat.