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As I reflect on 2023, I’ve decided it was a complete dumpster fire and needs to be left in the rearview mirror. I was fully aware of the seriousness of my diagnosis on 12/28/2022, but even so, I did not anticipate the rollercoaster of the last year. 4 lines of treatment, 3 hospitalizations, 2 ER visits, supplemental oxygen and a hip replacement. How does that happen so fast? I was literally still hiking in October 2022!

2024 is going to be a better year. I will find stable and get off the oxygen. Hopefully I can stay out of the hospital with having a doctor focused on my lungs and being diligent with what I’m supposed to be doing to take care of myself. No more hospitals!!

Overall, I’m feeling pretty good. I can’t remember if he last time I took pain medicine and think it was for the hip. It really is the breathing that is the biggest problem and that’s not even caused by the disease. Unfortunately breathing is a big deal and keeps me grounded. Thank goodness Dan watches out for my overall wellbeing and makes sure I have things to do, even if it is just a ride in a car.

NEAD stands for no evidence of active disease and is the ultimate goal. Let’s go Sassy!! There are adventures to be had. Bring on 2024!

Merry Christmas Eve

Things didn’t go exactly as planned yesterday. I was supposed to be watching the boys and their cousins ice skate at the Empire State Rink, but instead…. Epic Nosebleed!!

I’ve been experiencing a slow nosebleed for months. Literally, my nose is bleeding all the time. Well, that plus a blood thinner, oxygen and the dry air of the Adirondacks came together for an epic nosebleed that I couldn’t get under control. 

We’re talking bucket under my face and blood everywhere… poor Dan!! There was blood all over me, the walls, the sink, the floor…it was a crime scene!!

We weren’t home so off we went to find an emergency room as things weren’t slowing down after 2 hours. Luckily we found an ER where they were able to clamp my nose after using afrin and slow things down. Then they came at me with something called a rhino rocket which is like a tampon they shove up your nose and leave there for 5 days. That didn’t sound pleasant at all so I asked if we could try clamping again before taking that step. The 2nd clamp slowed things down enough that we could set the rhino rocket aside. Phew!! 

I was able to go home with strict instructions not to blow my nose or put pressure on it in any way. Do you know how hard that is?? The good news is that it has been over 24 hours and the bleeding is more residual than anything else. I hope it stays that way. I also have 1 nostril clear for breathing.

I’m re-committed to using my oxygen with humidity, even if it drowns me (although I think Dan figured out how to get it away from the machine which heats up the water and gets condensation in the line so that issue may be resolved). I’m also continuing to use the moisture medicine the pulmonologist gave me plus using a humidifier in my bedroom. So much work just to keep a nose functioning as it should!

At least it was Christmas Eve and not Christmas Day!!

I wonder what is coming next…this is such a rollercoaster. I certainly can’t say this experience is boring.

Pulmonology

I have another doctor on my team and I like him. He’s focused on my lungs…the biggest issue right now!! And, I lucked out again as I really like him. He seems to know his stuff and can explain it in a way that I can follow. Plus he didn’t disagree that maybe I can hike next summer? I may be a bit of a bully patient. But he said that walking is really good for the lungs so I was encouraged to do it.

Essentially, he told me the following:

1. I may have developed asthma and/or seasonal allergies so he’s going to test for that. He’d also like all the rug removed from the house. Dan is pleased. Ha ha! I’ve been dragging my feet on the rug for 20 years trying to wear it out so maybe this is the final straw? Oh, and I have to check to be sure my coats don’t have real down. I know my pillows and comforters are alternative down so all good there.

2. He’s taking over my steroid regimen. We’re going to stay at 40mg for 4 weeks and then drop to 20, but he wants to see me during week 2 of the drop to assess my reaction. If all is well, I’ll drop to 10mg for 4 weeks after the 4 weeks on 20 so I have another 12 weeks of steroids and moon face ahead of me. Another scan and pulmonary function test in 3 months will also help assess my status.

3. He said it can take 6 months for improvement after stopping the treatment that was negatively impacting my lungs. And I was on treatments that impacted my lungs for 10 months so it will take time. But, my good/bad cycle indicates this is an acute issue and not permanent so lots of hope there.

4. He’s putting me on a proactive inhaler to get steroids directly into my lungs. I had to text myself directions on how to use it. 

It was a lot to take in, but all good stuff.

The bad news this week is that I’ve lost the covering of hair that had been growing while on Enhertu. It makes me sad, but I’ll take it if treatment is working.

And, Tyler comes home tomorrow. We’ll have him through 12/27 and then again briefly 1/7-1/9. Busy boy!!

Good News

Dan and I went to Roswell bright and early this morning. I was dreading the visit as I’m not feeling great and was afraid it was disease progression so I was prepared to hear the worst after my CT scan last night.

But, the scan looks good. Better than good…for the first time I was told lesions are shrinking!! Woot woot!! And my tumor markers dropped another 5 points to 63. This is a great feeling. Thank you Troveldy.

So why am I feeling so fatigued with my oxygen tanking with any activity? They’re not sure, but we’re going to figure it out. I’m going back on steroids as I started feeling this way when my wean was complete. And, I’m going to see the pulmonologist on Thursday. My onc told me that my lungs are rigid like a dried sponge instead of a new sponge. That’s making it hard for my lungs to hold on to oxygen. And, he still believes this is damage done by prior treatments and not disease. I see that as more good news. 

This means I need to be a good patient, take it easy and follow doctors instructions. Mid-day naps are the best!! And, I’ll look forward to a better 2024 with more shrinkage.

Side Effects

Did you know that constipation and diarrhea are related? They seem to play off each other in a weird dance that’s keeping me uncomfortable no matter which is on deck that day. So frustrating!! 

The second infusion of the first cycle went fine, but I really need to get the GI issues under control! This is no fun and I feel like I’ve tried everything. But, I may be throwing myself from one extreme to the other so I’m going to try one thing for multiple days this next round, and less each day to see if slow and steady wins this race.

I go for a CT scan Monday night and should get those results Tuesday morning before the first infusion of my second round. I’m hoping for some insight on what is going on with my lungs as I’m still very dependent on oxygen. I really want to ditch my leash! But, my numbers tank every time I try to take a break so I’m not ready yet. The wean off the steroids ended a week ago so shouldn’t I be in better shape by now? Grr!! But, it’s not stopping me. I don’t want to miss the treats of the season…maybe that’s part of the problem?  

Today I’m going to Forest Lawn Cemetery with a friend to see ‘It was a wonderful life’ where we’ll get to hear the stories of prominent Buffalonians who are buried there. A little weird, but I like weird. I’m drawn to that cemetery. It is beautiful. And alive. They have an option to be cremated and put into a rock. That sounds like a great option to me… you have a place so you don’t end up in a closet, but don’t take up a lot of room. And, you can be moved. I wonder if you are allowed to put the rock in your landscaping at your home. I know that’s weird, but once again, I like weird. Poor Dan. You should have seen his face when I broke out my new hat this week. He called it a bold choice! Ha ha! Double Pom Poms are the best. Go and be bold! If it makes you smile, it is good, right?

So, here we go… Tuesday is a big day!

Trodelvy - Round 1

On Wednesday I sat in the chemo chair for my first round of trodelvy. The formal name is sacituzumab so my nurse calls it sassy. I like it!

The first time they drip it really slow to make sure I don’t have an allergic reaction and they pumped me full of Benadryl. I had a conference call about 30 minutes after they pushed the Benadryl and that was tough. I felt like my tongue was too big in my mouth and couldn’t focus on anything. Luckily it didn’t last long and I think I got through my call without sounding drunk. Maybe. Ha ha!!

The good news is that I didn’t have a reaction and so far, I’m in good shape. Today is day 3 (day 1 of no post-chemo meds) and I’m feeling fairly normal. Maybe a little tired. I was able to make thanksgiving dinner with help from my parents and Dan plus we went shopping yesterday. Today I did the weekly grocery shopping, made cookies and 4 pizzas before the firetruck parade…which I watched from inside. Not bad for post chemo days.

I’ll go back for round 2 on Tuesday and then I’ll have a week off. The timing works out perfect as my next off week is Christmas.

Lucy was very interested in all the activity.

So loud, even inside!

Such a good girl.

Ryan was outside with friends, but Tyler did his usual hangout in his room. But, even he’s headed out to meet friends tonight. 

It’s been a nice long weekend and my heart is full. Tomorrow I will rest.

Change is Life

Dan and I met with the oncologist today and the recommendation has changed after consultation with the tumor board. While the treatments we discussed last week could be options for the future, they are recommending a more traditional breast cancer chemo called Trodelvy. There is more evidence of success with this medication so it makes sense to start there. 

I’m not sure why, but I’m a bit bummed. I think I wanted to try something different and I really wanted to avoid an infusion. Oh well. Suck it up buttercup.

It was explained that the tumor board doesn’t think my breathing issues are due to disease which is good news. We know that my first line of treatment impacted my lungs negatively, it sounds like the second line could have as well and we know this last treatment did. Pneumonitis has been with me for a while and it is time for it to vacate the building. This new chemo doesn’t have those side effects so the hope is that the steroids address my current issue and we won’t be doing anything to put me back there.

The other good news that came out of today is that my doctor believes my disease is under control. That is backed up by the fact that I haven’t had to take pain meds for disease in a really long time. Plus my tumor markers went down again. 

My new treatment will begin 11/22, the day before thanksgiving. Hopefully the side effects will take some time to kick in so I can enjoy my turkey. And maybe some shopping on Black Friday?

Marathon

I keep reminding myself that this is a marathon which is really hard for someone who likes to just get things done. I’m frustrated that we’re approaching the one year mark on this journey and I still haven’t had any ‘normal.’ That also means my family hasn’t had any normal either. So unfair. But, metastatic breast cancer is a different kind of beast.

I met with my oncologist today about getting off this merry-go-round. He was prepared and started by acknowledging the cycle, noting the only constant is steroids making improvement and then repeating the same hypoxemic problems once I’m weaned off. Phew, we’re focusing on the real issue!! Unfortunately he used a lot of big words so this is just my basic understanding of what we reviewed.

He had gone through my history and found that I have a mutation that is not commonly attributed to breast cancer. My previous oncologist has made me aware of this, but set it aside. He’s picking it back up and recommending we try an FDA approved treatment, although there were only a couple of breast cancer patients included in the clinical trial. He called it a braf+mek inhibitor. I am considered stable so he plans to watch carefully for 3 weeks. If my tumor markers start increasing, he has the next treatment plan in his back pocket. The good news is that both of these treatment are pills so no infusions in the chemo chair!

This recommendation will be presented to the tumor board for review and agreement. Plus he’s consulting with a pulmonologist. I love the extra review. We are not alone on this journey.

I only need one thing to work. Just one. Unfortunately we’re still throwing mud at the wall to see what sticks, but he doesn’t recommend a lung biopsy right now with the amount of oxygen that I’m on. What made me happy was his confirmation that we still have treatment options if neither of these work.

It’s a lot. So, for now I focus on Ryan’s 15th birthday and I allowed myself to put the Christmas music station on in the car. Simple pleasures.

I’m Home!!

3 days/2 nights in the hospital is a quick trip for me these days. I must say that I’m shocked they let me out this afternoon. But very pleased to be home already!! 

Dan came home a day early from Vegas and spent time with me at Roswell last night. He mentioned that is feels normal doing that and he’s right. It should not feel normal for him to visit me in the hospital. I certainly hope 2024 is not a year riddled with stays in the hospital. I’m ready to leave the challenges of 2023 behind.

My oxygen saturation is still not playing nice, but they tell me it will take time for the antibiotics to work so I’m glad they’ll let me wait where I’m comfortable and can sleep. And, eat well!! I had a horrendous coughing fit last night and hot tea would have helped. I know I can have that now when I need it.

This was a week where family and friends were essential. I’m sure Aunt Deb and Uncle Tom are looking forward to a break from us. We leaned on them 4 days this week. I cannot express my appreciation enough. 

I’ll follow up with my oncologist this week and hope to get a better understanding of what the scans and cultures are telling them. My lungs haven’t been right for a long time…let’s figure this out!

Not again!

Lots has been going on lately and it is a bit overwhelming. I landed back in the hospital yesterday and I am not pleased. But, at least it is Roswell where the food is better. I’m looking forward to French toast this morning.

I think I mentioned previously that I ended up with a nasty cold earlier in October and it seems it hasn’t fully released me from its grasp. I continue to cough junk up and ended up back on oxygen last week when my numbers were really low. Boo!! I hate it even more now after my month of freedom, but I acknowledge that I need it. And, hope it is a temporary situation.

Going back on oxygen earned me a CT scan on Monday. Unfortunately the scan showed a blood clot in my right lung so I get to add a blood thinner to my list of medications. The clot could be causing some of my breathing issues, but my oncologist didn’t think that is the full story which makes me happy because I didn’t either which we’re now seeing is true.

Fast forward to Wednesday evening when I was experiencing significantly worsening shortness of breath to the point where it was difficult to do anything. Coughing fits through the night made it clear that I needed to reach out to Roswell, knowing full well what was going to happen. While Dan is in Vegas. But, I also know that our network of helpers here is strong and that network came through. Thank you to Aunt Debbie for going to the oncologist with me on Tuesday and staying with Ryan & Lucy last night. I couldn’t be more grateful. The best part is that I know there are many others who were ready to step in. We have the best family and friends.

So here I am. The did another CT scan yesterday and I read the report, but haven’t reviewed it with a doctor yet. The opacities in my lungs are a lot worse now than they were on Monday. They did tell me yesterday that I have pneumonia. Again. There may also be a couple of other things going on. Hopefully I’m in the right place to figure it out.

Dan is flying home today. I’m hoping I can go home soon and have the energy to make my own French toast. And I may not leave my house again until June!!

Boring Update

I’ve seen significant improvement in my leg over the last 2 weeks so I’ve ditched the cane inside and outside the house!! That means no oxygen or cane! Plus I’ve been wearing my wig so hopefully random people don’t know there is anything wrong. I haven’t been stopped and prayed over recently in the grocery store so I’d say that’s progress!! 

I’ve noticed people stopping themselves mid-complaint to say they’re sorry to be complaining about something normal to me. Does that mean I’m not allowed to complain about normal stuff? Because I had a head cold last week that was no fun so I’d like to complain about it!! Seriously, though, life goes on and while this situation does bring some perspective, I still want to hear about normal stuff…the good and the bad. I hope most people aren’t filtering themselves as I’m certainly not. 

I successfully navigated my first work trip since this all began a couple weeks ago, but it was a car trip. Since that went well, I’m headed to Memphis tomorrow on an airplane. Hopefully I’m ready. It does feel normal to be going back to my 2nd home (and to my secret life, according to Tyler). I did decide I should check my bag…that may be my only concession. I may be confined to the couch for a bit when I get home to recover.

Side effects this cycle seemed even milder than the last 2 cycles, which were pretty mild. But, maybe the cold masked the symptoms? Not sure, but generally, I’m feeling good. Woot woot!

Enhertu & Scan Results

I met with my oncologist today to review the results from my CT scan last week. Overall, the results were positive as there was no change since my scan in August which means STABLE!!  This was the goal. My next scan is in 3 months and I’m told that no change on that scan would be good news too. I selfishly want to see shrinkage, but that might not be reality yet. Patience is hard. My oncologist is focused on my whole self and is pointing to the lack of oxygen usage as another sign that Enhertu is doing what we want. 

My 3rd infusion was also today and that went smoothly. Side effects continue to be limited to GI unrest.  Lovely, right?  Hopefully I can address that by being more proactive with meds. I have a tendency to take something when it is too late.

The hip is recovering well, but I’m having pain in my knee, ankle and toes that is being attributed to arthritis. Sara thinks the new hip leg might be slightly longer so I’ll need to try an insert in my other leg too. I’m trying out a cream that just moved from prescription to over the counter for the arthritis. If that doesn’t work, I have a script for a non-steroid anti-inflammatory. It can also upset the stomach so I’m trying to avoid that. Overall, I don’t like taking anything. But, I have options which is good. Keep trying until you find what works…I guess I need to be ok with that for chemo too.

I got a strong dose of steroids today with chemo, but want to avoid them as much as possible hoping my moon face will go away. I’ve been off daily steroids for a week now.  I can hide the cheeks if I take the pic from the right angle :) I’m getting used to the wig and feel less self conscious with it, but I’d love to find something short and funky. My eyebrows and eyelashes are back…and my mustache!! Ugh!  I also have fuzz on my head, but it is nowhere near covered. And the areas that were radiated are seriously lacking. Maybe I’ll have enough to ditch the wig and hats in the spring?

I’m getting around more…I’m slow and get tied fast, but I’m there! Akron,  Ithaca, Pittsburgh and I’m about to book my first work trip to Memphis which I think will be ok if I bring the bare minimum, keep the weight of my backpack/luggage light and put myself in a position not to need to run to catch a plane. I also stopped using the scooter at the grocery store a couple weeks ago so I’m back to shopping with a cart. Thank goodness as those scooters are annoying. In the couple of months I used them, I only hit one person :) Oops!

Overall, I’m improving and trying to be ok with slow progress as that’s better than no progress. Reconciling how normal I feel in my head with my physical limitations is hard. My body had better catch up soon because there are adventures to be had. And I plan on enjoying all my minutes.

Grocery Shopping

Slowly, but surely, life is returning to normal.  Over the last week, I’ve been walking without the cane more and I just returned from Wegmans where I grocery shopped with a cart for the first time in months!  This probably seems small, but after ordering groceries online for pickup or using a scooter, this is a huge deal for me. 

Last week we returned to working in the office 3 days each week and I’ll be headed to Pittsburgh for my first work trip in almost a year.

I have my eyes set on normal. Soon.

Enhertu- Round 2

My second round of Enhertu was Tuesday making today day 4. So far so good in terms of side effects. The fatigue seems to be better this time too so maybe what I experienced last time was more related to surgery and hospitalization than treatment? I’m not sure, but I keep waiting for the other shoe to drop. I’ve held true to my reputation as a non-puker too as the GI issues have been minimal.

I have scans at the end of this month to see if this treatment is holding me stable. No change is what we’re hoping for.

What I really want is the next 2 weeks of steroids to be over. I have the round steroid face and I hate it. Soon.

I’m the meantime, I’m enjoying my minutes. Today I got an unexpected visit with mom and my aunts in Rochester which included a tour of the neighborhood that my great grandparents lived in and lunch at an old firehouse on their street. Fun times.

Mom kept telling me there was a lighthouse. We found it inland.

I’m going to have to get her back there to tour it.

Big cheeks!!

Lunch was so good…I’m going to be full for days!

I forgot to take a picture of the house. Next time.

Ugh…so full!

I need to stop eating. I’m so full all the time so starting today, I’m going to start watching my volume. My goal so far has been to stay hydrated and keep a level of full, but I think I’ve found critical mass and my body can hold no more!!

I’ve been waking up uncomfortable. Maybe 4 pieces of cake for my birthday wasn’t such a great idea? But, it was so incredibly yummy. Mom made me my favorite applesauce cake and Dan got the ultimate chocolate from wegmans with black raspberry ice cream. How do you resist both of those?

Overall, my experience with Enhertu hasn’t been horrible. I’m hopeful I will continue to tolerate this well and maybe the week before the next infusion will be normal from a stomach perspective. Overall, I’d say the fatigue is the worse part with slight stomach unrest. I’m so tired after the slightest activity. So unfair!

Dan tells me I still need to cut myself slack after surgery and 11 days in the hospital. I’m not so sure. I think this is chemo related. Maybe the next week will give me more perspective on the situation.

So here I am. Up early and enjoying a cup of tea. We’re going on the boat today with friends. I’m excited. 

Enhertu - 1st Infusion

Today was a really long day!! I left home at 7am for a bone and CT scan which takes forever as the radioactive injection needs to sit for 3 hours. These were scans to establish a baseline to see how I look in 6 weeks.

Then it was off to the infusion center. Things went slowly, but smoothly so I can’t complain. Next time should be a lot faster.

And, now I wait… 

Sleep

I really can’t complain about a solid 6 hours of sleep, correct? But, I am. 

I lay down at 10pm and sleep right away which is great considering I’m still on steroids. I’m able to sleep in 2 positions: on my back with my knees propped it on my right side with a pillow between my knees. And, I’m good for 6 whole hours. And then it is 4am which is way too early to be awake for the day. I’m wide awake!!

What do I do? I lay here picturing the hikes of last fall and before hoping to drift back off, but no. I think about what I’d like my next hike to be… hopefully a short, flat one-miler in October. Leaves crunching under my feet with sun shinning through the trees…

This morning is worse as I’m in a hotel so I really don’t want to disturb Dan and Ryan who are not suffering this same fate. Then I think about Tyler, hopefully sleeping through the night in his dorm for the first time. I’m fairly confident he’s fine. I’ve even checked the camera on Lucy in her luxury kennel and she’s sleeping away. It’s just me here in the dark left to my own thoughts.

So, I remind myself that I’ve slept 6 solid hours. I can lay here a few more thinking about all the blessings in my life as I listen to those I love most slumber around me. 

Home

I’ve been home a full week and am improving daily. Basic things still take a lot out of me, but I love being able to do them. Making dinner on Tuesday felt good. Since then we’ve been making the rounds of Tyler’s favorite spots so no cooking, but I’ll be back at it next week. I actually went down into the basement yesterday to restart the dryer. Woot woot!

The new chemo is scheduled to start on Tuesday and I’m full of hope that this is my key. I only need one thing to work, right? We picked up the nausea meds last night so bring it on!

Ty should be ready to go by the end of the day today. It is going to be so weird. And good for him. I’m so happy he’s going somewhere that he already has a network of friends and support. He’s smiling and ready even if mom isn’t quite there yet. I’m looking forward to hearing about his adventures. Maybe he’ll throw us a pic once in a while…with teeth. I know he’s ready.

Ryan is our social butterfly. Cars are pulling in the driveway daily to take him somewhere fun. Today is golfing. I’m anticipating a more typical high school experience for him with lots of football game attendance, dances and general good times. I’m looking forward to those smiles too. He’ll miss Tyler and I hope we find ways to keep them connected. 

Change is life and we’re rolling with it. Enjoy all those minutes as they are short. 

The Plan

Things have been a bit crazy since I got home from the hospital. But, I’d say improving.

I saw the surgeon yesterday who confirmed that all looks good and he removed my staples. I had an X-ray of my hip down to my ankle and all is as expected. Yay!! I’m still in significant pain, but that should ease as time moves on and I have hopes of walking without a device in another 4 weeks. I have to remember that surgery was just 2 weeks ago tomorrow. Slow and steady wins the race.

Today Dan and I met with my oncologist and we’re moving on to my 3rd line of treatment which will be Enhertu. It is a chemo that is every 3 weeks, starting next week. It is known to cause nausea issues, but the team is taking steps to avoid that plus I’m not generally a ‘puker’ so let’s hope that holds true with this treatment. I need to have a baseline echo and CT scan before I can get started. It worries me that I haven’t had chemo in 4 weeks, but I have to trust the process.

In the meantime, we’re dropping Tyler at school this weekend so I’m hoping to enjoy some time where I’m not sick from chemo. Maybe a nice pizza or other treat aimed at gaining some of my weight back. My left leg is really skinny!! I guess that’s what happens when you don’t use it for a significant period of time, but it better get with the program as I have things I want to do and see before the snow flies!! Time to squeeze in a little summer fun.

Keep the prayers and positive vibes coming. I can feel it and appreciate all the support.

Home

I arrived at home yesterday at 3pm after 10 nights/11 days. I  incredibly happy to be home and can already feel myself improving although the level of exhaustion is huge. I’ve never been this tired. Everything is such an effort, but it is an effort worth taking as it is another step towards independence.

The physical therapist came to the house today and said I’m doing well. I can now handle the stairs so I could move back to our bedroom, but I have to balance my want of my own bed with the effort it would take to get up the full flight of stairs. So I think I’m going to sleep downstairs at least a couple more nights to assess the situation. Maybe it won’t be such an effort in a few days.

I have an MRI tonight so I decided to walk to the car with a cane instead of a walker and I did it, but gratefully accepted the ride in the wheelchair into Roswell that Dan offered. Can and should are two different things. I’m going to focus on should and not do all I can. 

So tired. And so happy to be back where I belong. We’ll meet with the oncologist on Tuesday to discuss a new treatment plan to keep me home.

Day 10

Yep, you read that right. Today is my 10th day in the hospital and it is getting tough to keep my chin up so you haven’t heard from me in a while.

But, I got good news today. My numbers look good so there is a glimmer of hope for release tomorrow and I’m holding on to that glimmer as hard as I can. 

My roommate left yesterday so I snagged the window bed and have slightly more room. And she wasn’t replaced so that’s nice. The floor is on a hold for new patients due to staffing so maybe I’ll get lucky a little while longer. The roommate lottery here is rough. Did I tell you about the woman listening to her voice mail on speaker at 4:20am? Oye!! Some people really are clueless.

The boys are doing well thanks to Dan. Tyler’s been out enjoying his last few days at home plus packing. Ryan was shuffled around to lots of baseball tryouts. Sounds like he’ll be on the Academy Stars 15u team in the spring. They’re based out of the McKinley mall and he’ll have open  access to a gym as often as I’m willing to drive out there. He’s so excited.

Pictures don’t do the view from my room justice. I can see where the river opens into Lake Erie. I like being near the water since I can’t be on the water.

Frustrated and TMI

Since Friday, when things took a turn, I’ve been saying that I don’t believe I have pneumonia or anything else not related to my disease. I believe we need to treat the disease. Let me go home and I’ll work with the Roswell team. The answer from multiple people is that they won’t send me home until they figure it out as I’d end up back here. I even messaged my oncology team asking questions about the new chemo so I could be prepared. I was told we would discuss it Tuesday morning. 

My words have been ignored by this hospital until tonight when the infectious disease doctor came in. He listened to me and my history of being treated for pneumonia over the last few months. Then he said it is not his area of expertise, but he trusts the patient especially when what the patient is saying aligns with what the scans are showing. Therefore, he’s coordinating a meeting between this hospital and Roswell tomorrow. Thank you!! I finally feel like I can get off this merry-go-round. I fully expect to start a new chemo on Tuesday. This really isn’t great news, but there is no looking back. Make necessary adjustments and move on please. We need to find a solution that works. Fast.

Here’s where you may want to stop reading. 

Earlier in the day, I experienced a horrendous bathroom fail. Decide now if you really want to know more…

So when you lose your hair, you lose it everywhere, which is relevant. Everywhere. I’m not going to explain why, but let’s just say with my nose, I need to have tissues readily available as there isn’t any warning when I need to blow my nose or where it is going to go… left, right, both, fast, slow. Surprise!! I need to be on alert.

Back to the bathroom. I made a mess last week because the commode sat about 4 inches over the top of the toilet seat allowing liquid that was going sideways to escape. I need the commode because I can’t have less than a 90 degree angle between my torso and legs.  I asked for a funnel for next time and they didn’t have one so a nurse suggested using the commode with the bucket attached. Ok, it will require extra cleaning, but it fixed the problem…until today when the bucket fell off!! Seriously. The bucket and contents dropped to the floor. Mid-use! I was mortified.

The male nurse came in and put the bucket back on (while I was still sitting there) so I could finish my business. He left  and it fell off again!! How awful! There really isn’t any dignity in this disease.

But then it gets worse. The nurse didn’t think I needed to wash up. I disagreed so he got me a fresh gown and socks, but he was going to put them on without a visit with soap and water!! And, when he cleaned out the commode, he threw the waste in the room garbage can. Seriously? Did that sound like a good idea? Sigh. I tried to be respectful, but after multiple attempts, I did succeed in getting the garbage changed.

I worry I’m off base when something seems obvious to me.

I’m getting punchy. I really need to go home.

Still Here

I’m not sure I’m ever leaving this hospital as I enter day 7 of a 2 day stay. They just took my morning bloodwork so I’m hoping all looks good. It should after all they did yesterday. There were so many bags of fluid that I’m not even sure what it all was. I know there were 2 different antibiotics, 3 bags of potassium and a bag of magnesium. There was more, but I didn’t pay enough attention.

I’m getting around on my own ok. It is still hard to get back into bed, but I’m ok once I’m up. Getting out isn’t too bad either. I really think I need to move more. I was up walking yesterday morning and spent quite a bit of time in the chair yesterday, but the IV pole limited what I could do.

The room I’m in is small, but my roommate is respectful so I can handle that. She asked me if I go to college!! I guess the lack of hair makes you look younger. Ha ha!! 

Please, please, please let me go home today.

1 Step Forward & 2 Steps Back

Ok, so maybe it was only one step back and I’m treading water, but yesterday was frustrating. I had my discharge orders and things were looking good for going home, but then I popped a fever of 102.5, my heart rate was really high (as in 135 resting and 150s when moving) and my oxygen tanked to the high 70s. Ugh!! 

That all lead to bloodwork and tests (2 EKGs, chest X-ray, CT scan.) So far I know I’m not septic. And hopefully they didn’t find any clots in the CT scan.  As soon as I hear that news, I’ll be demanding to go home as I’m feeling better. It was the strangest thing!

Unfortunately they needed to move me to a different floor so I lost my private room and the ability to sleep for long stretches. Hospitals are no fun and I’ve reached my limit.

My hip still hurts a lot, but I am walking and am able to use the bathroom on my own. I need to drink and eat more.

Home is where I think I’m going to make bigger strides in recovery. We’ll see if I can get the doctors to agree :) We’ll be moving Tyler into the dorm two weeks from today.  That clock is ticking…

Surgery and Recovery

Wednesday was a rough day and Thursday was even worse. I don’t remember a lot of Wednesday once they wheeled me out of my room. I woke up after surgery in a private room which was a nice surprise so that means I’ve been sleeping really well…and a lot! I guess that is the reward for having a horrendous roommate who couldn’t be any louder…she was listening to her voice mail on speaker at 4:20am. Seriously.

Supposedly surgery went as planned. I don’t remember the doctor talking to us.

The pain once the anesthesia wore off around 2am Thursday morning was incredible. Intense! And PT thought I was going to get up and walk?? I did try and despite my best efforts not to, I screamed with any sort of movement. I did get to a standing position, but needed to lay back down. It was awful. That poor guy…we’ll see if he comes back today or sends a colleague.

Luckily they found a medicine that takes the edge off so I can now lay down and not be in pain so hopefully I can get moving today. The pain is more sore than intense now.

I’m ready to go home mentally, but not sure I am physically yet. We’ll see what the doctor says today. They’re moving me to a pill form of pain meds to find something that can go home with me.

No Surgery Today

So here I am, laying in a pre-op bed at Roswell all ready for the rod surgery to stabilize my hip…and it turns out that my femur is broken. I knew that the pain had gotten progressively worse, but there was no incident or sudden change so I did not anticipate hearing it was broken.  The X-ray tech probably knew as getting me into position for the scan was not pleasant for anyone.

Now they want to transfer me to another hospital to manage my pain until Wednesday when they will do a full hip replacement. Roswell isn’t set up for that surgery. Nothing is easy, is it?

I think I deserve something to go my way. And maybe it is? Maybe the other surgery wasn’t going to cut it so this is the right way to go?  In the meantime, the saga continues!!

One More Day

We’re almost there. In 24 hours, I’ll go to sleep knowing surgery is scheduled for the next day. Hopefully that will be the start of regaining my independence. 

I’m going in strong with the support of my family and friends. We’re 7 months into this thing and I continue to be amazed at those who reach out, offer help and generally lift my spirits. Thank you.

I hope this surgery will put me on the path to return the favor. I want to have people over and be able to make dinner. Or cookies. Or anything that doesn’t completely wipe me out. I need a nap after getting myself ready in the morning. Seriously.

One more day.

One More Week

I should be in surgery prep in 1 week. 7 more days to keep my hip/femur from breaking and 7 more days of pointless pain. I know I’ll be in pain after surgery, but that will be healing pain!

We just returned from a baseball tournament in Delaware. What a challenge that was to travel like this!! Dan thought ahead and bought be a transfer chair. I’m not sure what we would have done without it. He literally did everything I needed or wanted all weekend.

Sara, Mom and Ava came out too. They grabbed me early yesterday and I got to go on a wheelchair ‘hike.’ It was really nice to be outside. Sara got a good workout pushing me around!

Unfortunately we discovered that beach wheelchairs are nice in concept, but don’t work in reality. I did get to see the ocean, my toes were in the sand and I didn’t get dumped head first into the sand, so I was happy.

7 more days until I can hope to start my path to pain-free independence. I think spending 3 days in a wheelchair may have made my leg worse. The wheelchair was necessary and eased my pain while using it, but now that I’m home, I’m finding using the walker more difficult. Maybe I just need to more more? 7 more days.

I won’t be going to chemo tomorrow or next week due to surgery. That’ll be a nice break as long as it doesn’t last long. We need to keep attacking this thing. I want my life back.

A Week Alone

This week has been humbling. Dan and the boys left at 5am Monday morning and today is Sunday so they’ll be home this evening. 7 full days home alone.

Dan set me up so that I wouldn’t have to leave the first floor of the house. He filled the fridge/freezer with food, staged supplies from the basement in the hallway, moved my ‘office’ downstairs, etc. I’ve been bunking in Ryan’s room. It is rather comfortable!!

Work is the 1 thing I can do like a normal person so that kept me occupied during the day midweek and so far today. Friends stopped by with dinner or took me out 4 out of 5 weeknights with an offer for the 5th plus I canceled on plans last night as it was a chemo recovery day (Blech) and had more offers of help over the weekend. I have such a great group of people surrounding me. So blessed.

But, despite all that, my world feels so small. I can’t do all that I wish… All that I feel good enough to do besides this stupid hip issue. Mentally, I feel good and am clearheaded. I watched TV most of the day yesterday and am so done with that. The sun is shining, but the pool is out of reach. My usual escape is shopping and that’s too much. Boo! Dan probably won’t be happy with the online shopping I did this week for Ty’s dorm!!

And then I think of those who don’t have a Dan. How do they survive alone when it hurts to do the basics? I’ve fought the urge to leave my garbage and other discards around the house, but it would be so easy just to leave it there. I understand how that happens now. Do I clean it up and hurt while I do it or just leave it there? What if the boys weren’t coming home to unload the dishwasher, empty the garbage and do the laundry? Humbling.

All these musing… it leaves me appreciative. And determined to get my life back. I want to be a friend, mom, wife, daughter, sister…and not a drain on those around me. Thankfully nobody except me makes me feel that way.

Our Lucy is missing Dan too. I won’t let her lick me. She actually tried! I’m sure tonight will be quite the lick-fest!

A New Doctor

Recently, I received notification that my oncologist is moving to Florida. Just my luck!! But, yesterday I met my new oncologist and so far, I like him.

I’ve been in an incredible amount of pain and my old oncologist essentially told me there is nothing she can do except recommend surgery. No more radiation, no steroids, no different medicine. The new doctor gave me an injection of pain meds in the office and said he would consult with my surgeon about steroids for pain. He did agree that steroids wouldn’t fix the problem, but steroids could reduce the inflammation temporarily to get me through until surgery. So there’s hope!

He also explained two potential causes for the pain. First, it could be that treatment isn’t working and the cancer is growing. If that is the case, we’ll change treatment and he said there are lots of options. Second, treatment could be working and as the cancer cells die, there isn’t enough bone left to carry my weight. That makes sense especially since I started hurting after 2.5 rounds of chemo. So, I hope for the 2nd cause, but know there are options if it is the 1st.

Dan and the boys are in Ohio this week so I’m alone at home and getting through it. I’ve got friends stopping in to check on me and I’ve moved to the first floor. It does feel good to be somewhat independent.

Lots of hope!

Plugging Along

July is crazy busy. 2 baseball tournaments, the rifle national championship, college orientation…yikes!!

That makes July 31st the best day for surgery as there is nothing on the calendar for the first 3 weeks of August…if I can survive that long with this pain. It isn’t fair that I’m feeling really good except for my hip and that the hip is so bad that any sort of movement is exhausting. 3 more weeks. 

The plan is to put a rod in my femur and nails to hold it in place. I’m told it is minimally invasive and this will take the pressure off the bone, relieving me from this pain. It should also reduce my risk of fracture which is really high right now. So in the meantime, I’ve moved to the 1st floor of the house and am trying to stay sedentary. Unfortunately staying still isn’t one of my strengths!

Pizza!!

I’ve reached a critical milestone. Pizza tastes good again!! Woot woot!! I am so thankful to be able to enjoy that cheesy goodness. Simple pleasures.

Today was also chemo day which went well. I really like boring.

Yesterday Dan and I met with an orthopedic oncologist to get a recommendation regarding my left hip which has been causing me significant pain. I can’t just be good, right? The rest of me has been feeling fairly normal if you can ignore the oxygen lines and my lack of hair. But, the hip is making it difficult to move. The doctor recommended giving my hip another couple of weeks to see if the pain improves with more chemo. If not, I’m looking at a significant surgery. No fun. So my plan is to limit my walking as much as possible to give my hip the best chance of improving. 

So, there’s my weekly update. Onward!

A Good Day

I’ve had a lot of scans over the last week…echocardiogram, bone scan and a CT. The good news and the bad news is that results are usually posted within a couple of hours of the scan to the patient portal. And, of course I read them but have no idea what I’m looking at. Plus, I don’t want to be that patient so I don’t call and freak out. I wait patiently until my next appointment. Ha! Patiently… that’s funny.

The PA came in all smiles today saying my scans look great. But, how could that be? My feet show deterioration. Except that’s not cancer, that’s arthritis. Oh. But my bladder and kidneys lite up. Yes, she said, because that is where the dye settles. Oh. But my bones increased in density. Yes, because that’s what happens when the chemo is working. And the tumor shrinkage didn’t seem that significant. She said she considers it very significant especially considering they scanned at 6 weeks when they’d normally wait until 12.

Even the oncologist smiled and that’s not normal for her. She smiled, said everything looks good and sent me off to chemo early.

So, I don’t have cancer in my feet, my bladder or my kidneys and my bones are improving. And my heart looks good. I guess it is a good thing that I’m a patient because I really stink at reading results.

Today was a good day.

Chemo Break

Dan and I headed to Roswell early this morning to meet with my oncology team. I had lots of questions that I’m afraid resulted in more appointments!! I’m now going for an echocardiogram after asking about my high heart rate.  I will be seeing a PT to understand how to use a walker properly as I’m stumbling all over myself. I’m concerned about progression so now I’m waiting on CT and bone scans. And, they’re testing my thyroid too. Be careful what you ask for!!

My team states that my most recent chest X-ray shows improvement over the last one and my tumor markers continue to go down which is fantastic, but when will I start to feel that improvement? Unfortunately I feel like I’m more dependent on oxygen that I was just a few weeks ago. Frustrating. I do have moments where I feel mostly normal and then I see myself in the mirror. Yikes!

And, the cherry on top is no chemo today as they want me to finish the antibiotics I started last week. Boo. But, this time I accepted it as last week I fought it and ended up back in the hospital. Lesson learned.

They now think the fever I ended up with each of the last two weeks is chemo related. As are my swollen feet. 

So now I’m on oxygen, bald (finally shaved it last night), using a walker and I should be wearing compression socks. I am really rocking my 40s!! I can’t wait to see what comes next. Hopefully only improvement from here.

Defeat

Unfortunately I ended up with another fever which landed me in the Roswell day hospital Wednesday afternoon. There was talk of admitting me, but today was prom so I fought back. They agreed to give me a dose of IV antibiotics as it seems I was under treated last week for pneumonia and a blood transfusion plus a promise that I would call if I had any new or worsening symptoms.

When I went to bed last night, I thought I’d be calling after taking prom pics tonight, but now I think I’ve turned a corner. If I wake up good tomorrow, I’m hoping that means I’m out of the woods.

So, why defeat? Well…I applied for a handicap parking pass today because there are times I could use it, but I’ve committed to myself that I will only use it when truly needed. Boo.

For now, I’ll focus on being present tonight.

A Storm is Brewing

Last week I was upset about a potential 2-week chemo break and it hit the fan yesterday. Here’s the deal…my left hip is where all this nonsense started. It was quite painful until radiation a couple of months ago. I stopped taking pain meds until 2 weeks ago when it started bothering me again. An X-ray last week didn’t show much so I went for an MRI on Saturday which showed disease, but no fracture. Unfortunately they still are very concerned about my risk of fracture so I was told no significant walking and when I do walk, I need to use a walker or crutches. Seriously. I asked for how long and was told until chemo has time to work. They also said I could have surgery to stabilize the hip, but that would mean a chemo break and chemo is the priority. But, no chemo for 2 weeks because of pneumonia when I’m back to feeling good? Um, no. So here I sit in the chemo chair after lab work which looks good. Boom!! I AM THE STORM. 

The other problem with using a walker or crutches is that I also have an oxygen tank when I leave the house which means now I can’t leave the house alone. That is really frustrating. I love my people, but I also value my alone time. A lot. Me without sufficient alone time isn’t good for anyone. So we need to keep treatment moving so that I can have my freedom back. I’m also considering asking for more smaller tanks so that I can put them in a backpack. I won’t be asking for permission.

Saga

I really need a break. Every time I turn around, something isn’t going as expected.  I want to get back to boring.

Yesterday I spiked a high fever and landed in the ER thanks to Aunt Debbie for getting me there so Dan could attend Tyler’s academy graduation and to Uncle Tom for feeding the boys. It was an unexpected night and they jumped to our rescue. After a bunch of tests, I was diagnosed with pneumonia (again!) and was released in the wee hours of the morning. I woke up fever free so hopefully the antibiotics are working. Unfortunately this is going to mean a 2 week treatment break. I am not pleased.

Prior to yesterday, things were good. Chemo went well on Tuesday, although really long due to confusion with my orders. I continue to be reminded that I have awesome family and friends who are family. We’re five months into this journey and the love keeps coming. It is wonderful hearing from everyone. 

Over the weekend we spent time with ‘old’ friends and they’ve given me a new mantra:

I think it fits. I am the storm!! I have to remember that on days like today where it is easy to get stuck in my own head.

My hair is very sparse and I should shave what remains, but I have a little left in front that I pull down under my caps to show so I’ve waited. It is hard knowing that I won’t have hair indefinitely.

Time to pull myself back up and trudge forward. This is a bump in the road, but the road continues on so I am grateful.

Chemo Day

I meet with my oncologist every 3rd week and today was the day. Unfortunately I’m not ready to wean off the oxygen yet and need to stop taking oxygen breaks to give chemo more time to work as she says I’m causing stress on my heart. Darn. I guess I need to be scolded if I’m seen without my tank over the next 3 weeks. The good news is that she had an EKG done today and my heart rhythm is normal. The rate is just fast. Hopefully that will resolve as chemo has time to work and I get off the steroids which happens next week.

The best news is that my bloodwork looks good and tumor markers have decreased. Woot woot!!

Then it was off the the infusion center which was good and boring. I really am tolerating chemo well. I had some wonky stomach issues last week and am generally more tired, but nothing extreme.

I’m still hanging on to my hair, but there was more shedding this morning than usual so I don’t think I’ll have it much longer. And, that’s ok, as long as I’m here.

Chemo snacks have become very important. Yum yum!! Thanks to my Buffalo Mommies for taking good care of me.

Gamma Knife & Chemo

I am very glad that all I needed was one round of gamma knife as that was no fun!! Today was my rescheduled session after landing in the hospital when I was originally scheduled.  I was at Roswell at 7am to start with an MRI. I learned that hospital time starts early as I sat there for an hour before getting called back. Patience is not a virtue that I possess.

I finally got on the table for gamma knife around 11:30am. They started by placing a hot mask on my face that hardened to the point where I couldn’t move. This mask was more restrictive than the skull radiation mask.  Only my nose was sticking out through a hole. I couldn’t open my eyes or my mouth. It was a challenge to swallow, my mouth was watering and I really needed to clear my throat…yuck! At one point, I must have fallen asleep and I woke up in a complete panic that I was suffocating. From that point forward, I concentrated on breathing deeply through my nose to stay awake. That worked and I made it through the session, although I felt very squirmy and wanted to crawl out of my skin. I couldn’t see anything, but I could hear what sounded like a combination of a violin and the underbelly of an amusement park ride. Let’s not do that again.

This doesn’t look like the medieval torture device that is really is:

It was then on to chemo and that went smoothly. I am breathing better so I think this chemo is working on my lungs. When I see my oncologist next week, my number one question is how to wean off the oxygen. I think it is time which is exciting. In the meantime, I’m breaking the rules and allowing myself hour-long breaks during the day while I monitor my pulse ox. So far, so good!

Here I am today in my new sweatshirt from my Buffalo Mommy friends with zippers and snaps for my port. It is nice to be accessible and covered at the same time! Love it!

My hair is still sticking around. The next week should be interesting! 

Grateful

The amount of support I’m receiving is absolutely incredible. I wish there was a way for everyone to experience this amount of love without going through a serious health condition. It is good for the soul.

Family, friends, coworkers…the list goes on and on. I love all the messages, cards, words of encouragement, surprise visits, food deliveries, prayers… it is truly incredible and gets me all emotional thinking about the network of support we have. Every single effort is appreciated and is making this family stronger.

Today was Mothers Day and it was exactly what I needed. A day of nothing with Dan and the boys full of excellent food. I discovered that pizza tastes good loaded with sausage and mushrooms. And, a peanut butter parfait for dinner is a good choice with s’mores for dessert. Perfect!

Check out what Dan built after he removed the swing set .

This is going to be a great summer. With fire!!

Happy, happy.

Genetics & Chemo

It has been less than a week since I came home from the hospital and I’m slowly gaining my strength back. It is incredible how weak you become in a short period of time. My appetite is very strong and I’m back to be pre-hospital weight!! Unfortunately the dairy aversion is sticking around…but, I keep testing pizza just in case :)

Yesterday I heard back from the genetics department who confirmed that they tested 50 genes connected with breast cancer and I was negative on every one. What that means is that there is no genetic component, at least among the genes know today. Yay for my family!! Unfortunately that leaves me with questions about why. But, we won’t dwell on that. It is what it is and I’m going to focus on hitting it hard.

Dan and I headed down to Roswell this morning to meet with my oncologist. I was crabby because I knew they wanted to change me to a different type of chemo after my reaction last week. I want her first choice so I didn’t want to change. But, before I could express my concern, they explained that the other chemo is a cousin to what I had last week, is just as effective, doesn’t require pre-medication and takes less time to drop.  So why don’t they start with this chemo? It is more expensive so insurance won’t approve it without reason. I now have reason. Woot woot!

This afternoon I went to the infusion center and successfully received two kinds of chemo: Abraxane and Gemzar. The infusion itself was smooth. Thank goodness! The hair countdown is now on…two weeks until bald! And, a new wig :)

We received more pictures from Tyler’s Court of Honor that I cannot help but share. Treasures.

Home

After 9 days and 8 nights in the hospital, including 3 nights in the ICU, I am grateful to be home. There’s nothing quite like your own couch, blanket, bathroom…and being surrounded by your favorite people.

I’m amazed at how incredibly weak I am. Sara says it takes 3 days to recover for each day hospitalized and I believe her so I will take it seriously and stay slow. 

But, I’m also enjoying my minutes. I am here and part of this life. There is so much to be thankful for including all the family and friends who have offered support. It is humbling. And hard to say yes to help, but I’m working on it.

Mom made sauce this afternoon and is making my favorite cake tomorrow which will carry us through food wise for a while. I’m glad they are here.

The boys are good. Tyler still hides in his room and Ryan is obsessed with his activities which I enjoy seeing. He’s got another track meet tomorrow…maybe I can find a way to watch.

Dan came to see me daily. I’m so happy all he has to do now is walk into the living room. Home is a beautiful place to be.

Let’s not go back to the hospital. It is a very scary place. 

Partial Chemo

It is 2:30am and I’m restless. 

Unfortunately within 10 minutes of starting my first 60 minute chemo drip, I suffered a reaction and they had to abort. All of a sudden it was like I had 2 hot blankets thrown over me…one across my chest and the other across my face. It was rather scary, but they got it under control quickly.  This is the chemo I’ve had before and tolerated so I suspect there was something wrong with the accompanying saline solution or the rate of the drip. Whatever the cause, I did not receive that infusion.

The good news is that I did successfully receive the other infusion so I did receive treatment. I’ll focus on that.

Now I want to sleep, but can’t. I think I’ll dig into that blueberry muffin Dan brought me and find something dumb to watch.

Hospital Time

I feel like I’m in an alternate universe. It is now 8:15pm. I’ve been in the hospital for 7 nights and 8 days. And, they’re about to start pre-meds for my first round of chemo. Now. At night. I’ve been waiting for over 12 hours today. 

But, as long as it gets done, I’ll smile. 

Hopefully I’ll sleep through most of this with a heavy dose of Benadryl and anti nausea medication.

Time really doesn’t matter. As long as I get out tomorrow…

Shower 2!!

I must have been pretty pathetic yesterday when I was told I was staying because I got a 4:30am wake-up call this morning from my night nurse offering a shower before she goes off duty!

So I sit here, clean, in my own pajamas and am incredibly pleased. She even changed my sheets so I’m touching nothing dirty. It really is the simple things.

I hope these nurses know how much stuff like this matters. 

One more sleep. I hope.

Prisoner

I’m supposed to be home, but I’m not. I passed the walking/stair test. I passed the respiratory test. I was told I was on the ‘go home’ list. But, no, I’m still here.

It seems the step between IV steroids and pill form is too great so they’re afraid I would be struggling to breathe again as inflammation builds back up and end up right back here. That wouldn’t be good, but I wish they had figured that out earlier as this news was completely devastating to hear. Thank goodness Dan was here to catch me.

Now, they’re jumping through hoops to get my chemo started inpatient tomorrow as this treatment void is stressful and then another night in this room to continue to step down the steroids. 

My new hope is Wednesday and I’m trying not to let this hospital suck the life out of me before then. I need to find a good movie to stream tonight.

Dan was here for 4 hours this afternoon and my parents made it in so they all helped me get through today. 

Now I look forward to the hospital dinner special…Chicken Parmesan. I might be scared. Maybe tomorrow is the day I break down and ask for outside food to be snuck in!

We’re back to 2 more sleeps.

Shower!!

The huge news today is that I was successful in securing a shower. It seemed to be quite the ordeal with getting permission and setting everything up. The nursing assistant said I’m only the 3rd shower she’s seen in 2 years! How dehumanizing.

The boys made it to visit today as this is the first I would allow. It was so nice to have them here and I can’t wait to be back home nagging them from my place on the couch. 

I’m sure this is not shocking to anyone, but hospital pizza is no bueno. But, hospital French toast is decent so that might be breakfast tomorrow too. Dinner was lasagna and that was somewhat edible. I’m looking forward to normal food at home.

My oxygen is down to a level that my machine at home can handle so my job is to keep it there. No sudden movements!!

I guess I can call today a success. One more sleep.

Neutral Day

Not much exciting today. I’m still here and it sounds like my hope to go home is Monday as they wean me down from IV steroids so I can take pills at home. I’m getting restless, but I keep telling myself it is one more day. Two sleeps. The good news is that it is easier to sleep on this floor.

I’ve been up walking the last couple of days. I’m really looking forward to being able to get up whenever I want to. Soon. 

The food is better. I’m thinking French toast for breakfast tomorrow.

Sara left this morning which made me sad, but I am grateful for all she did for us while she was here. If I get a shower tomorrow, maybe the boys can visit and make the day go faster. A shower would feel so heavenly right now. I can only have one with doctors orders so I plan to take tomorrow morning really slow and keep my oxygen levels up.

Mom & Dad will be here Monday to help me transition home and keep Dan with some level of normalcy like Sara did.

Chemo is still scheduled for Tuesday so I hope that schedule sticks. I want to attack the root cause of this nonsense as I believe we’ve addressed the inflammation the best we can on steroids. 

One step at a time. The next milestone is near.

Pancakes!!

I’m finally off a restricted diet so I placed my breakfast order right away!

They must think I’m nuts. And they’d be right.

Milestones

I was disappointed last night that they had to increase my oxygen up to 70 while I was sleeping. It felt like a major step backwards, but I tried really hard not to let his tank my mood or hopes for today. 

Instead, today has been a day of milestones. The hospital staff is now calling me a drill sergeant so that is success in my book. Get it done! I got my oxygen lowered to 45 early and am now on regular oxygen!! I also had semi-solid food for lunch/dinner and they’ve moved me to a regular hospital floor, off the ICU. Still a private room.

Sara has been with me most of the day and authorized all demands so if this fails, we can blame her :) But, I think we’re headed in the right direction.

I felt bad Sara came all the way here, but I really needed her. And now she’s taking care of some of the things at my house that will make my heart happy. Like making sure the boys have what they need. Aunt Sara to the rescue!! Ryan will be running his first meet on Monday in spikes!

Dan’s here getting me all settled in my new room. He’s the best. And mine. There is lots to be hopeful for after a very scary week.

My next goal is getting released. Maybe tomorrow? Then, get chemo started. I miss my boys. And I’m still looking for that pancake.

Progress

I woke up a weepy mess today.  I didn’t like my numbers when I woke up and was struggling to see my path out of here, resulting in a bit of a pity party. But, cousin Holli gave me a kick in the pants via text. Then the doctor gave me hope that he’s seeing improvement and doubled my steroids to continue to bring down the inflammation. I heard from a few other favorite people sending support. Sara showed up and questioned why I wasn’t in a chair..that really was key. And now, I’m at 50 from 65. The goal tomorrow is 45. If I can walk on high flow on 45 without tanking, I can transition to regular oxygen. 

I’m approved for a full liquid diet so I had some decent tasting food today. But real food isn’t far off and I can’t wait for that pancake.

Steroids are pushing my sugar up so now I’m getting regular finger pricks with insulin. A minor annoyance.

I will be here through Monday unfortunately. And it seems there are a lot of hoops to get chemo as an inpatient so that is unlikely. Hopefully I can get released Monday with a chemo infusion on the way home. That’s probably ideal state right now to attack the other part of the problem.

So, progress. I’ll take it. 

Update

It has been a long day. I haven’t eaten since lunch yesterday and I have no idea when that is going to change. 

The doctors no longer think I have an infection in my lungs partly because they tested the pink goo I coughed up yesterday and it tested negative for bacteria other than what is normally found in the mouth.  This situation is probably inflammation from treatment or disease progression or more likely, a combination of both. The steroids that I’m on will treat the inflammation and the antibiotics will address any infection that might arise. 

Once I can reduce my reliance on oxygen, they’ll consider starting chemo while I’m here to address the disease. I’m thankful for that as the treatment void worries me. But, I’m still on high flow oxygen and nothing good will happen, including eating solid foods, until I’m off. I was at 80 when the doctor came in this afternoon. He said they’d consider transitioning me to regular oxygen at 45. Since I hadn’t set the alarm off in a while, they moved me to 70. A couple hours later they moved me to 65, but I set the alarm off and am hovering a couple points lower than where my ideal state is so we’ll stick here a bit. I’m hoping my body will adjust as I sleep. 

What we have learned today is that I startle easily. I was sleeping with my back to the door this afternoon. I felt something so I turned to look behind me and there was a Deacon standing there. I may have accidentally sworn…hopefully not… but he scared me!! Big man, dressed in black hovering right over me! Later, I was resting again, knowing that Dan would be there soon. I went to grab my phone to track him and he rose from the chair next to my bed. Aaahhhh!!! 

Overall, I’d say the situation has improved. I’ll probably be here at least through the weekend, but I do plan to leave this place and take a really long shower. And then eat something amazing.

ICU

It is 3:00am and I’m sitting here in the Roswell ICU. The good news is that I’m up blogging, right? 

Monday into Tuesday got intense. My struggles to breathe through coughing fits continued to worsen. We watched the pulse ox meter at home throw some really scary numbers, especially for us non-medical people. Dan actually brought home a chair for the shower to lessen the stress on my body. Yikes… we’ve reached that point.

Tuesday morning I was to report to Roswell at 7am for a round of Gamma Knife, which I did with a ton of help from Dan, but I let them know I didn’t think I could lay flat for an MRI, then the making of a mask so I could be locked down by my head for the session itself without having a coughing fit. Doesn’t that sound pleasant?

So they shuttled me around for a bit before sending me to the ATC. I heard it was called the Around The Clock care center, but it also said Assessment and Treatment Center. At first I felt like a big baby because they increased my oxygen from 2 liters to 4 liters and I seemed ok. But, as the day progressed, they saw the need to increase me to 6 liters and my levels weren’t coming out of the 80s. So a couple of scans later, they started me on IV antibiotics and steroids suspecting an infection.

Then I was advised I’d be transferred to the ICU and put on high flow oxygen…let me tell you, that is no joke!! They are shoving air up my nose with such force and they add moisture which makes me feel wet and like I’m drowning by air and sea at the same time! I’m not talking to anyone as this is enough of a challenge without using my voice too.

Unfortunately when I arrived in the ICU, I was told I was at high risk for being intubated for a ventilator which is really scary. They make you sign off on it and go through all sorts of risks. Oh, and because of that risk, I can’t eat or drink because they don’t want food to aspirate into my lungs in case they do need to intubate me. I’d really like to eat. 

They took the ventilator machine out of my room last night and my current nurse said it looked like I was moving away from that happening…thank you for those prayers!! So now the question is when can I get a scan so I can have a pancake??

There has been no miraculous recovery overnight. My oxygen still tanks when I move and subsequently cough. But, I do think I’m feeling better when I’m not moving. I’m no longer incredibly hot and am suffering from asking them to lower the temperature when I was! Oops!

The boys are on their regular routine and we hope to keep it that way. I want to see them, but I’m not sure I want them to see me. They can stay in their cocoon a little bit longer. This got very real for me and it doesn’t have to for them yet. If you are local and want to give Ryan a ride, it sounds like he’s willing to get in the car. Somehow he got himself to scouts last night. Ha ha! That kid is resourceful.

I get a lot of questions about what people can do for us. I really appreciate the contact. Just a quick message to say prayers are being said and you are thinking of us. Reach out to Dan too. He’s been a rockstar for me and he needs some love. There’s nobody better in the world for me than that man.