Pneumonia. Again.

I asked my doctor today how I could have pneumonia and not know it. It seems I’ve developed a tolerance for it. A co-worker called it a super power!! How sad is that.

I have had pneumonia so many times that I’ve lost count. 

I reached out to my team this morning because I’ve had a spot on my back that has been bothering me and I thought it was a pulled muscle. I’ve been doing more than I should lately… obviously, to those who know me. But this morning it hurt so bad that the pain in my upper back was coming through to the front. But a bad pulled muscle can really hurt, right? Nope, the scan shows pneumonia.  Seriously. No fever, no other signs. And I didn’t have shortness of breath.

The good news is they didn’t put me in the hospital, probably anticipating the fit I’d have because nothing good happens in the hospital over the weekend.

So annoying. But I am grateful I’ll be waking up in my own bed tomorrow.

Hair

I think I need a haircut. I haven’t had one in almost 4 years. My hair isn’t long, but getting fuzzy and sticking up in random places. Plus I need a cleanup around my ears and the back of my neck. Such problems. 

It is very strange to have hair that has never been cut. How many people get that experience as an adult? It is very soft. 

Tyler told me it is kind of gray and I corrected him…it is titanium!!  Then he told me I look almost normal. I guess that’s a compliment? 

Quarterly Scans

Friday was scan day and the results came back that day even though the scans were late in the day. Darn Roswell for being super speedy. Overall the reports read positive, but mentioned a slight uptick in my bones which I worried about all weekend although I know better. Don’t react until you talk to the doctor. Right?? 

So I got the interpretation of the results today and all is well. There is significant improvement in my lungs, no new tumors and those in my liver shrunk. So what’s up with the bones?? My doctor thinks it is healing. Sounds like it is hard to tell the difference between disease and scar tissue on a scan. Since everything else is going well, I’ll believe him. For now.

This new medication is still treating me well. The stomach issues continue, but I’m managing it. Tumor markers are down to 51.5 from 120, blood pressure is good even off the high blood pressure medicine, I’m breathing better and my hair is still growing. I’ll take it!

You know what is upsetting? I think I feel too good for disability.  That was always my comfort when I had a bad day… I could always go on disability.  But I think I’d get denied. Such problems!! So for now, there’s chocolate.

My biggest issue today was the nurse wearing a concert t-shirt and calling me sweetie. I am NOT a sweetie. But I was good and stayed quiet. He was filling in so hopefully I won’t need to deal with that again. Dress properly and treat your patients with respect!! Yep, I think this means I’m old.

I’m Home

That overnight stay at the hospital was unnecessary, but at least it was only 1 night. I did receive IV antibiotics so that’s good. And, no steroids!! Hopefully I’ll kick this pneumonia quickly and be back on my way.

Hospital Time

I was so pleased that I made it over a year without being admitted to the hospital, but that all came crashing down today. Overall, I’m still feeling decent, but have been feeling crackling in my throat when I lay down. It’s been waking me up and keeping me up at 3am. So I told my doctor and now I’ve been admitted for pneumonia. Again. But this time I’m not getting steroids so I’m hoped this is just for 1 night of IV antibiotics. 

I was supposed to drive to Sara’s tomorrow, but now that isn’t going to happen. Mom was going to be there too. I’m bummed. My consolation prize might be a big bowl of buttery popcorn at the theater when I get out of here. 

I really do feel fine. They should reserve this bed for someone who really needs it.

Got my candy back

Great news, I get to restart my truqap at the full dose. Woot woot.

Boston

We were in Boston today for my pulmonary consult. I’m happy to be home as we are not city people!! The traffic is nuts, but we tried to make the best of it.

I am still feeling decent so I left Dan in the hotel on Saturday and met a co-worker at a huge mall. I did take a few breaks, but I walked that whole mall. Yay!!

The next day Dan booked an hour walking tour of Fenway stadium. Guess how many stairs there are in a stadium built in 1912?? Yeah, that was a lot and I may have been bringing up the rear of the tour, but I got through the whole thing and still had energy left for Quincy market. AND…I left Dan in the hotel again so I could run to the outlet mall. Of course the 2 stores I wanted to check out were on opposite ends, but I did it. Yes, I’m proud of myself.

Today we were at Mass General really early for my CT scan. Luckily the doctor took us a couple of hours early or we would still be in the car. Nothing exciting happened with the visit. Essentially she says I can come off the steroids from her perspective, but she wants me to consult with an endocrinologist before I fully wean as the body can stop making cortisol when you are on steroids for a long time. That seems fair. She’s also switching me to a different form of cellcept which is what is replacing the steroid as we suspect some of my GI issues are from the cellcept since it hasn’t stopped even with my break in treatment. Hopefully my breathing will continue to improve and I’ll start weaning off that too. I’d like to keep chipping away at these side effects and have to take less medicine. Lately it seems like I keep having to take more to counteract another med. I feel like the old lady who swallowed the fly.

My oncologist was out of the office today and they only had authorization to restart my medicine at a lower dose so I’m waiting for tomorrow to see if I can start at the full dose. I’m not giving up that fight.

It Was the Jelly Beans!!

I’m in fight mode. Spittin’ mad. And likely to use words that mom wouldn’t approve of.

Let me back up. I started truqap and began week 4 yesterday. This med is pills take twice/day for 4 days and then 3 days off. No infusion. About 1.5 weeks ago I started to notice I was breathing better and weaned myself off oxygen. Things continued to improve from a breathing perspective. It was odd because my breathing had actually gotten worse during my month break in treatment. That had me freaked out. But, I had always pushed back on my doctor on this pneumonitis thing with scar tissue in my lungs because my breathing was starting to become a problem before I started treatment. I’ve always suspected it was disease.  They insisted the evidence said otherwise.

This is not a miraculous recovery, but my breathing is at least 50% improved. I can walk and talk at the same time. I’m experiencing lack of appetite plus continued stomach issues, but I’m experimenting with things that are helping. I have been tired and lack stamina due to lack of food.  But overall, I’m feeling much better than I was.

Another side effect of truqap is increased glucose and I’m still on 5mg of steroids which also increases glucose. I’ve been testing high at home, but nothing crazy. I tested this morning before eating anything and it was 101. Under 110 is good. Last week I was 122-166. I had a small bowl of multi-grain Cheerios and 1/2 cup of coffee with creamer after I tested this morning. And at 2pm at my clinic visit, I was at 377. Crap. They tested me again 1.5 hours later and I was at 319.  So now I have to take a break from truqap plus take 2 meds to get the glucose under control. And, when I start again, they want to reduce my dose. No. Just no. They reduced my dose on the last med and I had a slow decline including increased tumor markers until I had progression. So don’t tell me that less medicine is just as effective. How could it be?

I tested myself when I finally got home about 2.5 hours after the first test and I was at 225. Still too high, but at least I know my meter works.

They also said the jelly beans I ate yesterday didn’t cause this especially since I tested low this morning. But I still blame them. I ate a lot. Darn Candy!! It’s hard to deny myself something I want on the days my stomach is good. And I have Cadbury cream eggs waiting for me. Calling my name. Infiltrating my dreams. Ugh, I love them so much. I might need my dad to visit and eat all my candy.

I just need 1 medication to work and right now, I feel better than I have in a long time and my tumor markers went down from 120 to 90 since I’ve been on this. And, I have eyebrows.  Why can’t I have a win and keep it?

I cried. Couldn’t help it. I also told them that I’d rather have diabetes and be able to breathe than go back to how I was before. 

Ok, pity party over. I’m going to lay off the jelly beans, do what they told me to do and hopefully they’ll let me go back on the full dose Monday.

Liver Blasting

The last 2 weeks has been eventful with my treatment. On 3/9 I had my first Faslodex injections plus the mapping for the liver procedure. Then on Monday 3/16, I started taking the truqap pills and yesterday, 3/19, was the actual liver procedure where they planted radiation seeds. Yup, I finally got my space invaders to attack my obstinate liver. I guess it was the Y90 procedure I’ve seen others talk about on the cancer boards.

I’ve had some of the same GI issues so I’m not sure if that means it will continue on these meds, or it of is leftover, or if it is just the result of everything I’m taking. The good news is it is manageable and only once or twice each day.

The procedure has made me even more tired than usual, but I’m radioactive for 3 days so I don’t have much to do anyway. The naps are good!!

I get my next set of injections next week. I may take them up on 2 nurses doing th em at the same time as they sting!!

I’m hopeful this change will work. I kinda have eyebrows and see a dark haze on my head. Woot woot!

Cancer swag?

I received the pills for my new treatment today and it came with swag. It find that strange and somewhat concerning that they also sent anti-diarrheal medication. Didn’t I just leave a treatment because that side effect was so incredibly bad? But, back to the swag… I guess I’m supposed to wander around with a medication branded purple bag and a weird water bottle while wearing their socks? The pill organizer might be helpful. Maybe. I think I’m too lazy to actually set it up weekly.

The good news is that I have the pills now and can start the medication next week. I can’t start now because I have to test my glucose on day 3 and they don’t want that to fall on the weekend.

There are also injections that go along with the pills. The 1st 3 doses are every other week and then I go down to once/month. I asked if I could give myself the injection, but I now understand why the answer was no after experiencing the first round. They are 2 inter muscular injections that go in slow. It is not pleasant and the sites were sore for a couple days.

Unfortunately after the injections, I went for liver mapping. That wasn’t horrible, but that twilight sedation really makes you tired and the spot where they went in is still sore. Not sure I want to go back for the real procedure next week!! But I will because I want those space invaders to show my liver who is boss.

At this point, it has been over a month without treatment and my eyebrows are starting to grow back. I’m in the smudgy/dirty phase and my glue on eyebrows no longer stick. Such problems!

I hope the growth continues and is fast as you really do look sicker without eyebrows.

I really hope I get to be one of the people who doesn’t have nad side effects with this treatment. Please!!

Hope

Things happen for a reason.  And I am grateful.

I know I’ve been quiet lately and that’s mostly because I’m exhausted. The side effects of the treatment I’ve been on for two plus years have built up and have become intolerable. But, you can’t leave a treatment behind that is working so it’s been a challenge.

I had my quarterly scans a couple of weeks ago and it showed my liver is not being compliant. That is a reason to change treatment which makes me happy. We’re doing 2 things.

I’m finally getting the space invaders I asked for last year to attack my liver. Remember when I was told you can pull the weeds you can see but there are always more? Hrmpf. I knew an attack was necessary!! So I’ll be going in Monday for liver mapping and then assuming all goes well, I’ll have radiation seeds 2 weeks later. 

They did another blood biopsy for additional information and I just got those results back today. I am also eligible for a targeted treatment called truqap that is a pill and a monthly injection after more frequent injections in the beginning. It didn’t have FDA approval on 2023 when I started my most recent treatment and all signs point to trying it now with the liver radiation. That means no more IV chemo!! Assuming the treatment is effective. And my hair could grow back which means I have hope of nose hair… I miss nose hair the most!

So no chemo Thursday and I guess I can’t be upset that I didn’t have chemo last week because of a delayed insurance approval as that might have messed this new plan up.

I have hope that my quality of life will improve and hope is a powerful thing.

Change

Change is coming and I think it is necessary. I’ve been on this treatment for over 2 years and already reduced my dose because the side effects had become toxic. Unfortunately I think the toxicity has built up again.

I’m grateful for treatment and the opportunity to live. Truly, I am. But this is awful. Aliens have taken over my insides, stirred them all up and are spitting me out. I can’t even keep water down. I tell myself that it is only a few days every 3 weeks, but that’s not working anymore. There has to be another option.

I want to eat and have energy. Maybe it is time for a week of vacation just to sleep.

My 2 Favorite Words

I had scans on 11/17/25 and the results posted the next day. My own interpretation of what I read is that nothing had changed since the last scans, but I decided to be patient and wait on the opinion of someone with a medical degree. That happened yesterday and I’m excited to still be stable as well as unremarkable!!

I’ve now been on Trodelvy for 2 full years which is excellent to be on the same line of treatment that long. It knocks me down and the stomach issues continue, but nothing I can’t handle to keep enjoying all of my minutes.

I talked to the Boston team and am increasing cellcept again tomorrow which is the drug intended to replace the steroid. If my labs are good Monday, I’ll start stepping the steroid down. So I’m going to be good…sleep well, eat well and wear my mask. Stack the deck towards healthy.

And now, to focus on a fantastic meal with family on Thursday and an even better dessert! I might need to break into the pie a day early.

IVIG

One thing that the Boston doctor found with those 13 vials of blood is that my immunoglobulins are low. So she suggested IVIG which is basically an infusion of antibodies which will help me avoid getting sick or make any sickness less severe. Unfortunately I can’t get the infusion at the same time as chemo which meant I was there last Tuesday during my off week. Bummer. And they always drip the first infusion of anything new really slow so I was there for 6 hours. I got a lot of work done, but it isn’t fun sitting in that chair that long. The next one should be a lot shorter.

I increased the dosage of the cellcept intended to replace the steroid a couple of weeks ago and so far that is going fine. I haven’t started to step down the steroid yet. Hopefully that will start soon so I can start the process of returning to myself in the mirror.

There isn’t much else to share right now. I have a virtual appointment with the Boston steam on the 12th so I’m hoping they might have another suggestion for me. 

Other than that. Things are boring. And that’s a good thing.

Boston

It has been a really long day. I was on the road from mom & dad’s at 4:35am this morning to drive to Boston to pick Dan up from the airport. He was up at the same time as me for his flight. We then proceeded to the hospital to meet with the lung specialist. All I can say is I don’t understand why someone would choose to live in a place with all that traffic.

I was so afraid we were doing this for nothing, but the doctor was really thorough and I have hope even though today was mostly history/fact gathering. Minimally, she’s got a plan for another medication that will have the same effect on my lungs as prednisone without the side effects. That would be awesome. I can’t stand how the steroids make me feel and the weight gain is awful. I don’t feel like myself. So I’m really hoping this works.

She sent me for bloodwork and they took 13 vials!! Unfortunately some of the tests she ran won’t come back for a couple weeks and during that time she’s planning on presenting my case to the team of doctors focused on ILD. Then we’ll have a virtual appointment where I hope she’ll have some new ideas. 

We then headed back home. 14 hours of travel for both of us!! Long day, but maybe the start of a new plan?

Bad Assumptions

Before reading this, please know that all is well. I’m still ‘stable and unremarkable’ so no cause for concern. But I learned some interesting stuff yesterday so I’m sharing.

I had my quarterly scans on 8/19 and the results I saw on the portal concerned me as it read like I have extensive active disease, but then ended with ‘no change since the may scans’ so how is it so bad now? I decided to stay quiet and wait until my appointment on Monday. 

Normally I speak to the doctor after a scan, but this time I met with the PA who walked in the room and said ‘ your scans were good’ in a chipper voice. I told her I didn’t think so and started asking questions. The doctor told me that often scar tissue looks the same as disease and that there was 1 active tumor they were watching in my liver. The response of the PA was that active is defined differently. They consider a tumor active if it is doing something like growing. That is not my definition of active. If it is not active, it should be dead in my world. So that was sobering. I need to be more assertive to make sure I really understand the results of my scans.

Then I handed her my ‘do not resuscitate’ form. Again, no worries… this is just to have on file. She said she agreed with my decision not to be intubated because they typically do not extubate someone in my situation. Yikes!! So intubation equals vegetable until death? No thanks. That might explain why the doctor was so concerned with my first hospitalization when my oxygen levels were so low. I didn’t understand the issue at the time. So now I’m really glad I refused intubation then and now I’ll never be intubated.

This whole situation is as much mental as it is physical. I really need to keep my head in check and not think about it. I try to fill my mind with visions of hiking and sitting on the beach. 

2nd Cataract Surgery

I finally had my 2nd cataract surgery on Friday. All went well. A month of wonky eyes was too much. At least now they are the same, although I’ve got to figure out the reader situation. I think I need glasses where there is no script on top so I can just wear them all the time. On and off all day long is annoying. No more contacts or glasses that make my eyes look small!

I also got an appointment at a hospital in Boston with a doctor who specializes in lungs. Originally the appointment wasn’t until March, but they called this week with an appointment in September. Woot woot. I need to hear from an expert that there is really nothing more that can be done to improve my breathing. I don’t have a lot of faith in my current pulmonologist. But I did with the last one and he said the same thing…I have scar tissue from previous treatments and it is there to stay.  I really don’t want to accept that as it is what impacts my quality of life the most. So I’ll push a little harder to be confident I’ve done all I can.

We decided we needed a relaxing day yesterday so Dan drove me to the finger lakes to check out a couple of wineries. What a beautiful day it was with my favorite person. Take advantage of all the minutes.

Cataract Surgery

I had my right eye done today. And things are weird. I can tell I’ll be able to see distance clearly out of that eye, but the surgery on the left eye isn’t for a month so things are wonky right now. The doctor has suggested that I wear a contact in the left eye, but I’m not a huge fan as contacts dry my eyes out so I may have the right lens removed from my glasses which will be so very attractive. I’m more concerned about comfort than how I look. Hopefully I can navigate things so I can function.

I don’t know what my close up vision is going to be like. I think I need some time for things to settle down. Dan says my eye is still dilated so maybe that is why I still can’t see.

I might be looking forward to shopping for funky readers. Maybe some bright colors or animal prints or clear frames. Oh and I’ll be able to wear real sunglasses…and see the clock in the middle of the night? Maybe I’ve finally gotten a positive impact from a side effect of treatment. Maybe.

Another day, another experience. Some days I wish I could be Lucy.

Always ahead of my time…

Yes, I’m always ahead of everyone else when it comes to medical issues. Breast cancer, shingles, hip replacement, and more all before 50. And, to keep up with myself, now I have cataracts at age 50. Good times.

I noticed I was struggling with my vision recently, but thought it was because my eyes were watering. About 2 weeks ago, I realized the vision in my right eye was blurry, like there was a film over it. I had an MRI to rule out disease as a root cause. Luckily there is nothing in my brain. Yup, nothing there ear to ear! That explains some other things, but not the vision issue so off to the eye doctor I went.

I suspected a steroid induced cataract after my extensive medical studies and after a bunch of tests, cataracts in both eyes was confirmed by a real medical professional. I’m relieved as there is a fix!!! And the doctor says I’ll come out of it without thick glasses. Woot woot!! 

First I need to see a retina specialist to see if there is anything they need to do to stabilize my retina as they’re thin. Then I’ll have a surgery for each eye sometime in the next month. I’m actually looking forward to it.

It really is always something in my world. These treatment side effects are the worst. At least this is fixable.

Catching Up

Life has been crazy lately. Normal, non-cancer,

life. I consider that good!  Work is nutty, baseball is in full swing and Ryan is still in school. Run, run, run. Normal.

On the disease front, I’ve continued my recovery from the April hospitalization. Still weaning off steroids. I’m going down to 20mg tomorrow and then I’ll be back at my 10mg baseline in two weeks. I certainly hope to find my face again under all this puff. And maybe stop needing to eat all the time. I really enjoy food!

I had scans a few weeks ago and the good news is that there is only 1 active tumor in my liver that they are watching. Woot woot!! I’m considered stable and unremarkable. But fragile. Now there’s a word rarely used to describe me!

My lungs are what really impacts my quality of life so I’ve been pushing my team on that. The next step is a second opinion in Cleveland or Boston. I intend to pursue that. Soon. When normal life subsides just a little.

How wonderful it is to be engrossed in normal.