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. 

This week will end

It has been a rough week. After confirmation that my first line of treatment failed, they placed a port on my chest on Thursday in preparation for chemo. I’m thankful that I no longer need to use my hand for IVs, but I’m not a huge fan of this bump on my chest. Not a huge deal. But another visible reminder.

I will lose all my hair with chemo so as soon as that happens, I plan on going wig shopping to find something that makes me feel good. My current wig is fine, but I don’t feel like myself in it. Maybe I won’t in any wig, but I might as well try again.

I’ve been struggling to breathe, experience ridiculous coughing fits and can’t find a comfortable way to lay down with the port. I can’t lay on my back as that is certainly going to cause a coughing fit. And I’ve been on my left side so much that it hurts. Somehow I managed to sleep through the night last night and I am thankful. The night before was awful.

And to add insult to injury, remember the benign tumor they found in my brain in January that they told me lots of people have so not to worry about it? Well, that tumor shrunk during treatment and benign tumors don’t shrink with treatment for cancer so on Tuesday, they’re going to use the gamma knife to blast that away. Fun times.

This week was enough. Next week, I’ll walk in with my head high for gamma knife and to start chemo on Wednesday. We’ll leave this week in the dust. 

Tough News

I’ve been feeling pretty awful lately and its been getting progressively worse which is hard to admit.  Not being able to breathe is suffocating. At night the coughing is horrendous, making me sore and the lack of sleep painful. I do what is necessary and sleep. That’s it. 

I also had COVID which went into pneumonia so I was hopeful that after I finished the antibiotics, I’d feel better. Unfortunately that was not the case. 

Today was my oncology follow up after my scans last week so I started tracking my blood oxygen levels and sent them a summary of my concerns on Thursday hoping to get attention on the issue as I had raised this as a concern before Covid without success. Turns out, that wasn’t needed as they could see my levels were low during my routine vitals. They ended up walking me down the hall to confirm I was dropping into the mid-80s just walking around. So what does all that mean?

Let me introduce Hank, the oxygen machine that I am now hooked up to as I navigate my home. See all that tubing? It follows me wherever I go and there is enough to get everywhere. So no hide and seek for me…just follow the green line. Ugh!! I also have a travel version, Henrietta, that I’m just as excited about.

The main reason for my oncology visit today was to review the results of my scans. While the treatment did impact my bones positively, there is disease progression in the soft tissue which means my first line of treatment has failed overall. More wonderful news.

What all this means is that I’m now transitioning to IV chemo. I’ll have a port placed on Thursday and have my first infusion on Tuesday. New treatment means new hope, right? And it had better work so I can kick Hank and Henrietta out of my life.  A friend sent me this quote today that resonates…

Sails are adjusting and we’re trudging forward.

I am grateful to Uncle Tom for taking me to my appointment today. Dan is in Colorado with Tyler, which is exactly where I want him to be, and I didn’t want to be alone. He got to experience the whirlwind that is Roswell…phlebotomy, vitals, PA, onc, respiratory therapist, pharmacist and someone who referred to herself as the junk drawer. Her actual title is ‘Oncology Nurse Coordinator’ and she does all sorts of random things…hence, the junk drawer. So, thank you Uncle Tom for getting me through a very hard day.

Onward.