One Year

I had chemo yesterday which was also my 1 year anniversary on the same line of treatment. I find that exciting after blowing through 3 lines of treatment before starting this one. Mom went with me so it was the first time I didn’t work from the chemo chair and I realized just how fast it goes when I’m actively doing something. Things seemed really slow yesterday!! Poor mom.

I also met with the PA instead of the doctor and I really like her. I told her I asked the doctor about cutting out or radiating my liver tumor and he said they typically don’t do that for metastatic disease, but he didn’t explain why. She said he is pursuing it for me and has engaged the radiation team, but that they normally wouldn’t do that unless I was in pain, which I am not. She then said it would be like pulling the weeds you can see in your garden. You know there is more you can’t see. Hmmm. Maybe I didn’t know that. But it does make sense although it is really sobering. At least know I understand the why.

My wean off steroids failed so I put myself back on, with the doctors blessing, before landing in the hospital. Now I need to let it build back up as I’m still struggling with breathing with any activity. No fun. At least I’m home. A year ago I wouldn’t have known what to do until it was too late.

There’s nothing much else going on except a bird in the oven and yummy sides. I think I’m hungry!

Long Time

I didn’t realize how long it had been since I updated the blog. I guess that means things have been boring which is good, right?

And things have been good except for a pesky cold that I think I’ve finally kicked with the help of a steroid boost. I’ve started a slow taper back to the daily 10mg dose for my lungs, which are still not behaving. Hopefully I’ll stop needing to eat all the time and my cheeks will start to shrink.

I had scans last week which showed I’m still stable. No reduction in size of the liver lesion, but no growth either. I asked the oncologist if we can radiate or cut the disease out of my liver as it seems to be the only area of concern with disease. He said they don’t normally do that for metastatic disease and there is the risk of bleeding with pain, but he’s going to present the possibility to the radiation department to see if I’m a candidate. I am a pushy patient!

My spine also lite up, but that could mean disease or the bone is healing/creating scar tissue. I choose to believe it is healing as the rest of my bones have healed and I’m not in pain. No other bones show activity. My oncologist thinks that healing is a reasonable assumption.

That leaves my lungs. I am off oxygen during the day which goes well most of the time. I still struggle with any sort of incline if I forget to go slow. I see the pulmonologist next week so we’ll see if he has any new ideas besides waiting for my current treatment to stop working on the disease so we can try something hoping to keep the disease under control AND not have the lung side effects. My oncologist seems to think I need to reset my expectations and see this as the new normal. I’m not ready to accept that just yet. I need to be able to walk and talk at the same time.

Other than that, I’m trying my best to keep life normal. I’m working full time and cooking a lot. I’m looking forward to turkey, stuffing and mashed potatoes!! Oh, and the firetruck parade! 

Grateful

My CT scan from last week still hasn’t been read by a radiologist yet, but I saw my oncologist today and he backed up what the pulmonologist said. He came into the room smiling.

He showed me the scan from June next to the scan from last week. He said there are 2 lesions they’re watching in my liver. He showed me one of them and measured it. In June, it was 1.7 and now it is 1.4. Not a huge reduction, but I’m pleased with that.

He said there could still be microscopic disease in my bones as bones take time to respond, but the scans also show scar tissue being created so it is tough to differentiate that from disease. But, I haven’t been in pain for a long time indicating good things are happening. Hopefully over time we’ll see the activity in my bones ease.

My oncologist told me today that he’s not convinced that there is disease in my lungs. He said it could all be pneumonitis. That would be good news, but it makes me fear cold & flu season even more. I think I need to be vigilant about masking and staying away from places with lots of people. One cold could see me back.

Oh, and he also confirmed there is no disease in my brain. All my weirdness is just who I am.

Then he suggested I might want to consider a dose reduction to ease the stomach issues. No way!! I’m not risking this progress. This last round was nowhere near as bad as the round before. Let’s hope that is because I stayed ahead of it with meds so I can repeat that. I’m afraid it was the extra week off chemo for vacation.

Or, it could have been my shopping trip into the village last Thursday. One of the shop keepers told me I needed to manifest cancer going away at 8:08 on August 8th. She recommended picturing myself walking toward the ocean with a box. When I get to the water, take the camera from everywhere in my body and put it in the box. Then set the box adrift, without until it is no longer visible. Ha ha!! This is why I need to start wearing a wig when I’m out to stay incognito.

Overall, it was a good day. I did wake up crabby so I wore my sparkly shoes and a nice outfit. It worked!! Fake it until you make it.

Woot woot!

I am so excited…I had a bone scan and a CT scan yesterday with an appointment with the pulmonologist this morning. The bone scan reads stable and the CT scan results aren’t published yet, but the pulmonologist said my lungs are significantly improved. There is now only inflammation in the bottom. Yay!

He tested my oxygen levels walking around while not on oxygen and I did well so he took me off oxygen during the day while I’m doing regular activities. I’ve been home for hours now and it is so weird. I keep trying to grab my lines and step over them, but they aren’t there!  My ears are so happy.

Unfortunately supplemental oxygen is like a drug and I’m feeling a little wonky. I may allow myself to wear it for an hour to help my body get used to this, but overall, this is fantastic.

He also reduced my steroids to 10mg which means I don’t have to take the antibiotic with it. And, he’s setting me up for a sleep test to see if I can ditch the oxygen overnight as well.

Now I need to make sure I don’t get sick which probably means I need to wear a mask since I won’t have my own air supply.  A cold could really set me back.

I go see my oncologist Tuesday morning and I’m hoping for more good news coming from that CT scan. 

Oh, and the best news…I’m under doctors orders to get out there hiking again.

Check this out… I went bald in public!!

TMI x2

So I discussed week 3 with my team yesterday and we’re going to try a couple things:

1. I’m starting mirilax during weeks 1 & 2 trying to avoid the constipation that happens after my infusions. Usually I see that as sweet relief after the horrors of week 3, but I understand that constipation can lead to diarrhea so we’ll give that a try. 

2. I can take a lot more of the preventative meds. I now have 2 and can take up to 8 of each. I haven’t taken more than 8 total in one day. We’ll see.

3. I did not discuss this with my doctor, but I believe I’m responsible for some of the stomach issues I ended up with during my unexpected week 4 (they pushed my chemo after moving it for vacation so I got extra time off). I went out to a work dinner and finally got a lobster roll. I also had blue cheese on my salad. It was probably too soon for that, but I really enjoyed it. Then I went out with a couple of girlfriends and had chicken parm. Once again, I enjoyed my meal and enjoyed my time with friends more. Oh, and I had ice cream…lots and lots of ice cream.  I love to eat. And see people. So eating with good people is awesome.

I’m also happy to report that my oncologist is on the same page as I am regarding my current line of treatment. There is another chemo available in another category, but he doesn’t want me to abandon this chemo until it stops working. I’m good with that even though it means I’ll stay on steroids and have no hope of my lungs improving. The longer I’m on a line of treatment the better. I know this chemo will eventually stop working so we’ll pick that hope back up at that time.

Wish me luck this weekend… we’re headed to Pittsburgh for another baseball tournament and I’ve got my eye on pizza and a milkshake. And all the yummy food at Too Golf. (Tyler will be home taking care of Lucy…he will be eating my prepped food from the freezer…not as much fun).

TMI

This post is going to share way too much so be warned. 

My current chemo cycle is three weeks with infusions on weeks 1 and 2 with a ‘break’ during week 3. The 3rd week of my chemo cycle is always the most difficult, but this last week was especially horrendous. I seriously couldn’t understand how someone would refuse treatment, but I sure do now!! 

Usually I have 2-3 days of GI issues which I can deal with using preventative medication. For some reason, this week lasted 4 days and I’m still not right on day 5. Cramping, pain, diarrhea…I couldn’t eat or drink anything without losing it. Even water was an issue. So sick. I know I lost at least 5 pounds. Hopefully I can start eating again soon to gain that back.

I reached out to my doctor multiple times which I don’t normally do. They adjusted when I take my preventative medication and then changed the medication yesterday. I’m not sure the change helped or if it was just the time for improvement, but I was able to somewhat function today with 2 significant naps. Hopefully I can handle the grocery store tomorrow as that wasn’t happening today.

Let’s not do that again.

Steroid Addiction

Unfortunately my wean off steroids failed. Sunday, July 16 was my first steroid-free day and I was so excited. I did well for a few days, but the following weekend we were away for a baseball tournament and I was struggling with walking to the field on flat ground. Hmmm, seems odd. Then I developed a low-grade fever which I attributed to pain I was having in my jaw which can be a side effect of the chemo I’m on. When I got home, I struggled even more as I needed to climbed stairs to go to bed so I called my doctor. They didn’t seem too concerned and had me come in for my regular pre-chemo appointment the next day where I was put back on steroids :( Unfortunately chemo was also delayed as they didn’t want to tank me any further than I already was, but I didn’t end up in the hospital.

On Thursday I went to the pulmonologist who scolded me for stopping steroids early. I didn’t realize I had. He had given me a step down schedule, which I followed. But, I guess he expected me to stay on the lowest dose until I saw him again. Oops. But, I’m glad I didn’t because this episode was resolved before my trip to Bethany Beach. If I stopped my steroids after seeing him, I could have had a problem at the beach.

Now my doctors are talking to see if there is a non-immunotherapy line of treatment they can try. The pulmonologist is convinced the inflammation in my lungs is still treatment related. If they can’t identify another treatment, I’ll stay on a low dose of steroids long-term. 

The good news is that there is an antibiotic you take with steroids and that has resolved my fever and ear pain. And I’m feeling better on the steroids so I’m in Bethany Beach enjoying myself while crashing Sara’s vacation. Toes in the sand along with a little boardwalk shopping is just what I need.

Moon Face

I took the last of this round of steroids yesterday so I’m hoping my cheeks start to shrink soon as well as my appetite!! Dr. Google says is can take weeks or months for moon face to go away. I sure hope not. Maybe I can help it along by increasing my fruit and veggies while reducing bagels and dessert! Does strawberry shortcake count as healthy?

Dan and I took a ride in the Chevelle this morning and I grabbed this pic. I don’t think my checks can be any bigger. I feel like me and would really like to see me when I look in the mirror. I still shock myself.

I’m wearing my Memphis shirt today because it is hot and we enjoyed bbq for Dan’s Father’s Day lunch. At least the shirt still fits! I’m afraid to try my swim suits. Hopefully I’m moving in the right direction starting today.

Unremarkable

While I’ve never aspired to be unremarkable, I was pleased to see that word along with ‘stable’ all over my CT scan results. I’ll take unremarkable all day long!!

I met with the doctor this morning and confirmed that the results of my scan showed that treatment is doing the job of maintaining disease. I pushed back as I really want to see less disease and it seems that some of the tumors in my lungs are slightly smaller. Overall, what is in my lungs is tiny in terms of disease. There is still fuzziness from pneumonitis which I guess is good as it explains why I still need supplemental oxygen and gives me hope that my reliance will get better as the lungs continue to clear. I hope.

So, I’ll stay on this line of treatment. Sassy and I are getting along. I hope it stays that way as the average time on this medication is 9 months. I’m at 7.

Clumsy

Can I blame being a complete klutz on a disease? This last week has been a doozy. 

Last Saturday I was cleaning out the vanity in my bathroom and managed to spill an entire bottle of skin so soft on the floor. And it was one of those big refill bottles so a significant spill. The house still smells. Luckily Sara was here to help me clean it up. The floor was really shiny!! Oh, and I decided to wash the towel we used to clean it up with a regular load of laundry. Not a good idea. The shirt I’m wearing now was in that load.

On Thursday I managed to trip UP a stair and landed on my knee. I’m fine and the knee is fine, but who falls up stairs?? 

On Friday, I spilled sweet & sour sauce on my keyboard while trying to eat dinner and work at the same time. Things seemed ok on Friday, the keys started to get a little stiff yesterday and the A totally doesn’t work this morning. Ha ha!! You just have to laugh. Luckily my parents taught me not to waste things so I never used the last new keyboard I received when my laptop was replaced… I had another one ready to go. I think the old keyboard was at least 10 years old and the letters were actually worn off the keys so it didn’t owe me anything, but what a way to go…drowning in red sauce…

In better news, I thoroughly enjoyed the day trip to Niagara on the Lake with Sara last Sunday. I found a couple of scarves that I love and we enjoyed a nice lunch. I’m ready for her to come back for afternoon tea.

Hopefully we’ll be on the boat and in the pool soon. And attending lots of baseball games! Come join us :)

My new scarves. I think I have a different scarf for every day of the year. But I still love picking out new ones.  The first one is reversible so it’s like I got 2!!

Plugging Along

There’s not much news to share so I’ve been quiet. I felt better this weekend than I have in a while. Maybe it was the fantastic weather? I’ve been out by myself poking around stores and feeling normal. I’m good as long as I stay on flat ground. Stairs and carrying things are still an issue. Can’t complain about that…Dan and the boys have been great about helping with things like laundry and bringing the groceries in.

Last Sunday, Dan finally relented and glued eyebrows to my face. He procrastinated for a while and I don’t blame him. Eyebrows are hard!! And they sure do look bigger and darker than I anticipated, but I think I’m getting used to them.

I felt like Bert for a few days last week and surprised myself every time I looked in the mirror. But it is another step towards looking normal in public. Now to find a comfy wig that looks like me.

I cut my steroid dose in half again today so maybe I’ll stop needing to eat all the time and start sleeping later. Getting up between 4 and 5am is getting old. 

Life keeps moving. Tyler’s been home a full week. He’s eating and drinking us into multiple grocery store runs! Ryan is a golfing machine. He played 3 rounds of 18 holes this weekend. 

I’m looking forward to scans at the end of the month…hoping for continued stable disease. And remaining pain-free.

Next weekend I have a goal of a short, flat hike. I think it is time.

Self-Advocate

Nobody else can advocate for you like you. And that’s been the name of the game this week.

Until now, my bloodwork always looked good on chemo day and there has never been a question that I’d get a full dose. Unfortunately when I was in hospital #1, my white blood cell count tanked and they started talking about a chemo reduction to 75% which made me angry. They had all sorts of folks talking to me about how a reduction is protocol and the package insert even says so (according to the pharmacist who called). Um, no. I’m not ok with reducing my chemo dose because of a run of the flu. A one time event. If my bloodwork on chemo day is an issue or if it happens again, then we’ll talk. But, not yet. 

So yesterday was chemo day and I pled my case to my oncologist. And won. I got my full dose and am feeling good. I’m going to will my bloodwork to look good for my dose next week too and leave this situation in the rear view mirror. Package insert…be proud of me for not telling the pharmacist that we don’t need her if all we’re going to do is read the package insert. Seriously. I came really close.

Today was my appointment with the ENT for my nosebleeds. Essentially I had a nosebleed from last Wednesday through Sunday afternoon. It is not pleasant and rather gross. Once again, it was time to advocate. I’m done with seaweed up my nose and want actual medicine. So, he’s got a compounding pharmacy making up an acid spray and if that doesn’t help, we’ll be doing a light cauterization on one side at a time. Finally hope for relief!

My strength is returning with my attitude. I see the pulmonologist on May 2nd. Watch out!

Home

I’m hoping my discharge from the hospital today sticks this time. I spent 4 nights and 5 days at Mercy hospital and the same at Roswell with 1 day at home in between. 10 days in the hospital is enough!! My body is sore from too much time in bed and the recliner. I’m happy to be home where I have a little more freedom. 

I won’t be climbing the stairs in the house which means I won’t be sleeping in my own bed, but I will be sleeping in a bed in my house. I’ll take it!

Unfortunately, I can’t say the issue with my oxygen tanking when I move has been fixed. It is still happening, but they really weren’t doing anything besides antibiotics and steroids in the hospital so I can do that at home. They’re not sure what is causing it and it’s probably a combination of things including recovery from the flu. Hopefully I’ll see improvement in time and will hope I don’t become a pest to Dan and Ryan as I ask for help.

I appreciate all those who reached out to check in. We’re hanging in there!

Oh, I should add that I had a nice view from my room at Roswell and can’t complain about the food…good stuff!

See the lake?

Boomerang

I want to know if there is a prize for getting admitted to two different hospitals within a week?? Unfortunately I was still struggling to breathe when I got home from Mercy Hospital on Thursday. It’s never a good sign when I don’t get off the couch.

So Dan called Roswell this morning. They wanted an ambulance to transport me to an ER. Um, no. I will be arriving at the hospital in a GMC Acadia. And I won’t be going to an ER this time. Can you believe we had to fight to get Roswell to take me? They eventually did and here I am. Hopefully not for long. They’ve already started steroids which I asked for over a week ago. 

I’m also getting a bunch of other stuff including calcium and blood. This is where I need to be.  

Hopefully Dan will make his way back this evening with some food as I finally have an appetite again.

I just want to be normal again. I want to be excited that Tyler is going to prom tonight and Ryan is at a track meet. I’d like to attend a track meet like a normal mom. Hopefully soon.

Hospital

Unfortunately, as things go with me, I’ve landed myself in the hospital. It seems I brought influenza A back with me from DC despite efforts not to like wearing a mask on the metro. I knew I wasn’t feeling well on Easter and things just went downhill from there until a week later when I was admitted.

Today is Thursday so day 5 and I hope to be discharged today.

Mom & dad have been here since Friday taking care of me and Ryan. Dan has been in Colorado Springs with Tyler at Junior Olympics. He’ll be home today.

I’m still not right, but I can’t stay here anymore. My whole body hurts from coughing and being in this bed. I’m looking forward to my own bed, my couch and choice of food. Hopefully today is the day!

Scans

Today was a very emotional day. I had a CT scan yesterday and the results came back stable which was what we expected. I had a bone scan today and freaked out when I saw the results as it looked like I’ve had a significant increase in activity. How could that happen with decreasing tumor markers, good bloodwork and generally feeling decent??  I was a complete mess. Being able to access results on the patient portal is good and bad. Luckily my doctor responded quickly and calmed me down. 

I have a cold right now which he knew about as I asked for a preventative antibiotic trying to avoid pneumonia and a hospitalization. He’s confident that the brightness the radiologist saw on the scan is the result of my immune system fighting the cold. He said he measured the lesions and they have not changed since the August scan, therefore, I’m stable. Phew!! Lesson learned. The freak out can wait until the oncologist agrees it is time to freak. Now is not that time.

So now I’m going to be kind to myself, take the antibiotics that I did get prescribed and nap. And eat the leftover Easter candy.

Treatment, nosebleeds and popcorn balls!

Today was week 2 of my 3 week cycle of 2 weeks on and 1 week off. Infusion day is down to a science. The nurses know I work while in the chair so we have a sort of sign language so we stay on the same page to get me out as soon as possible. The biggest thing I need to do is give them my name and date of birth when they’re hanging the chemo bag. I like it. 

Unfortunately this chemo causes GI unrest that starts just before my 2nd infusion and gets worse on my off week. It is bad. Good thing I’m slow when I walk so those I care about are usually ahead of me. Yikes! Sorry for sharing too much. I really can’t complain if that is the worst of it.

Almost 2 weeks ago I went to see an ENT about my nose. I’ve been to the ER twice for nosebleeds that I couldn’t get under control and really don’t want that to happen again so I got off my rear end and made an appointment. Another doctor is the last thing I want, but it wasn’t getting better in its own. The doctor wants to take a gentle approach so he put me on a nasal emollient which is an oil I use 2-3 times each day. I’d say the bleeding is improved, but still there. And now I smell like an incense store which gives me a headache. I go to see him again this week and am hoping we can try an antibiotic or topical hormonal solution to move away from the oil. Oh, he also recommended taping a toothpick to my nasal cannula to keep the prongs away from my septum which is where the blood vessels run. That’s attractive especially when the oil drip on the toothpick and then I get a nosebleed. Needless to say, I have to change that contraption often.

Tonight I decided I wanted popcorn balls so I put all my tools to use from Tupperware measuring cups, big bowl and popcorn popper (not recommended), to my orange Le Creuset pot and finally my pampered chef spatulas. Thankfully I mentioned my plan to mom who gave me some tips…in addition to putting a couple tablespoons of water into the caramel, also add a half stick of butter. And it is easier to shape the popcorn with wet hands. Thanks mom!! I’m looking forward to my treat. I hope Dan and Ryan will eat some as I will eat them all if left to my own devices.

Tattoo

I’m still laughing about this so I need to write it down.

Tyler called a couple of weeks ago and floated the idea of a tattoo by me. He probably thought I was going to object, but I told him it was something I wanted to do in college as well. I never got the nerve up to actually do it so he suggested that we get matching breast cancer ribbon tattoos. 

After the call, I texted him the metastatic breast cancer ribbon for consideration.

The response I got back was that it was the worst color combination ever and it “looks like it would taste sour.” Bah ha ha!! He’s ruined the ribbon for me as I can’t unsee that. It totally does look like sour candy.

Then he texted me this pic:

He is so right. And now I think the idea of mother-son tattoos has moved on which is probably best…I have 7 medical tattoos that really hurt!

MRI Results & a Pumpkin Pot

I love that I can see my scan results within hours of the scan, but it is really necessary to wait for the doctor to interpret them. My report had some really big words last week that I was worried about, but all it really meant was stable and no additional treatment recommended for my brain and skull.  I’ll take it!! They’ll scan again in 3 months. 

Last week was also week 2 of my chemo cycle so this week should be my worst side effect week, even though it is my week off treatment. But so far, so good…maybe I’ll get a break and be able to have a normal week? I sure hope so.  Or, maybe it is because I visited mom & dad on Friday so my body is confused about where I am? 

In food news, mom & I checked out the Le Creuset outlet in Lake George. I think she was shocked that I bought a pumpkin pot, but it makes me smile and life is too short not to smile.

Isn’t it beautiful? I was going to make chocolate bread today in it. And then decided to make gumbo. But, in the end, I didn’t break in the pot. Yet. I think I will try that chocolate bread… in my pumpkin pot!

I did make the gumbo. But, the purple pot did the trick. I still love that pot too, even though she’s been around a while. Everyone should have a purple pot.

Someday, I’m going to make a huge meal using all the pretty pots. Or, maybe it will be a day of pretty pots with breakfast, lunch and dinner each made in a different pot. Simple pleasures. 

Food

There isn’t a whole lot going on so I’ve started trying new recipes and taking pictures of my food. Yep, that’s where we’re at. Pictures of food. I’ve discovered I can work and cook like a normal person so that’s how I’m spending my time.

This one was pretty, but somewhat plain.

So was this…I guess I need to add more spices! Or stick to creamy garlic chicken as we all like that. I can’t remember if this was Marry Me Chicken or Cajun Chicken. The Cajun chicken was good. I’ve tried a lot of one skillet chicken meals lately!

The bread was surprisingly good.

 

The Dutch baby is on our regular breakfast rotation, but I decided to try it in a different pan… it worked!

Waffles are a regular in our house too. Covering them in chocolate chips and whipped cream is not, but sleepovers have different rules.

 

Tonight was braised chicken thighs over rice. Poor Ryan lamented that he likes it when we just have Italian sausage. I guess I’ll throw him a bone next weekend and make sauce. Maybe he should have eaten the lasagna last night!

The good news is we’re eating well! Or at least Dan and I are.

Long day

I left the house before 8am today and didn’t get home until after 5:30pm. Long day!! But, a good day.

This line of treatment is 2 weeks on with 1 week off. Today was my 2nd round of chemo for this cycle and it went smoothly this morning. I’ll have my off week next week which I’m not looking forward to as that seems to be when the GI issues really hit me. That is no fun. I’m going to try a different medicine combination as I’m still looking for the magic solution.

After chemo, I had a few hours before I needed to leave for my pulmonology appointment so I decided to go to the office. It was nice to see people in person. I need to find a way to do that without getting stuck there all day as the portable oxygen concentrator isn’t the best. I start to feel light headed after a while, but I was on real oxygen at chemo and again with the pulmonologist so I knew I’d be ok for a few hours in between.

My appointment with the pulmonologist was also uneventful. He is pleased with the improvement he’s seeing on my scan, happy I’m down to 2 liters of oxygen and that I didn’t have a decline when I stepped the steroids down from 40mg to 20mg a couple weeks ago. He wants me to step down to 10mg in 2 weeks and then 5mg for four weeks to keep this wean really slow. Ugh. 5mg wasn’t part of the original plan. I guess that means I’ll keep eating, gaining weight and puffing my cheeks out.

I wanted more from that appointment, but he told me that I need to be patient. I’m still really struggling with inclines and stairs. He says the improvement I’m looking for will come. So, I decided to give him a bit of a hard time. I was nice about, but I asked if he thought I was fooling myself into thinking I can stick around for a long time after seeing my scan. He said it is realistic as I am stable. I then asked if it was realistic to climb bald mountain on Labor Day weekend which is 1 mile up. He said we’d make that the goal. 

He agreed I need to keep moving. I can’t risk a fall so that probably means malls for now. Let me know if anyone wants to shop!! It is a medical need :)

CT Scan

I went for a CT scan last Thursday evening, which was early as my tumor markers went up 8 points at my last appointment. My doctor says that isn’t significant and tumor markers are only a guideline, but he could see I was concerned so he moved my scan up.

The scan results were positive, although I wanted it to be more positive as patience is not a virtue I possess. I was hoping for a reduction in disease, but I need to be happy with stable. Stable is good.

There is improvement in my lungs which is very good. I’m also pleased to hear that there is more improvement needed because I am still very much dependent on oxygen and was feeling like I should better than I am. He showed me the scan so I could see the improvement and that there were still opacities ready for improvement. Once again…patience!! I am down to 2 liters so that is progress. He also reminded me that previously we weren’t sure if it was disease or pneumonitis causing the lung issues and now we know it’s pneumonitis so we can focus on that. 

He also confirmed that sclerotic, which was in my scan report, means hardening of the bones where there was disease. So, my bones have scar tissue which means healing, right?  A year ago I was in significant pain and taking pain medication 24/7. Today, I can’t remember the last time I took anything for pain. That’s improvement.

He also said that my bloodwork shows that my organs are functioning normally. So overall, I’m ok. Even though my tumor markers went up again by 7 points. The scan is more telling as is how I feel which is generally good.

4 Good Days

Well, I made it 4 days into 2024 until I landed in the ER on the 5th with another crazy nosebleed!!  I guess all the things I did to keep moisturized wasn’t enough so I’ll be calling an ENT on Monday. That cannot happen again. This time it was a 5.5 hour bleed that did eventually stop with huge clots that were incredibly uncomfortable. Guess when it stopped?? As we were waiting to get called back to a room in the ER. Then the rest of the time was spent trying to get me to blow out or cough out the clots. All that did was make me sore.

I did manage to convince them again that a rhino rocket wasn’t necessary. 

The clots came out this morning with a nice hot shower. So gross. But, the good news is that I didn’t start bleeding again and now I can breathe through my nose again which should make for a better night of sleep.

Let’s hope the ENT has some magic.