Getting used to the O2 leash

I spent yesterday and today getting used to dealing with having a oxygen (O2) leash. We had Broadway series tickets for Chitty Chitty Bang Bang yesterday - fun show. Then, we went to PF Changs for lunch. It was nice to just get out.

Today, I had misc stuff to deal with - particularly, arrangements for O2 during travel. I think/hope I am set for Philly for the wedding and for May 30 for Avery's 1st birthday party. Looks like I will need to make special arrangements for the trip to Rome and the cruise since the company providing my O2 here can handle throughout the US but is not international.

Also, I had to order an extra portable tank. We figured out over the past couple days that my one portable holds between 4 and 5 hours total O2 - which means it would handle a significant time at work. So...they will deliver another portable on Wednesday. That way I can deal with a few hours at work as well as the drive there and back.

I feel quite a bit better with the O2. Clearly, the pulmonary embolism (blood clot in my lung) was/is significantly blocking the functioning of my left lung - that's the good one without the cancer!! After about 10 days without proper function and being short of breath if I did just about anything, it is nice to be able to function at least a little.

I am back on some steroids - which means I have some appetite back. Still not the kind of appetite I had when I was on the highest steroid dose. I am at about 1/2 dose compared to the highest when I was on radiation. But, at least I am back to being able to eat. I suspect I have at least gained some of the weight back from when I wasn't eating.

That's about it for now.

Getting out

Don't know if I'll have time later, so I better update now. The docs were in a few minutes ago. I am being released from the hospital today. Hooray!

I will be on oxygen at home at least for a while. And, I'm becoming an expert at giving myself the lovenox shots. I have an appt with Dr Einhorn around May 13 - so I'm assuming that will be the next follow up unless any significant issues come up before then.

My energy is back to a good level. Probably the steroids that have brought back my appetite. But, for now, I'll take what I can get.

Have been on the Tarceva for two weeks today. Haven't noticed any significant side effects yet. I probably shouldn't speak too soon.

Will update further later if there is anything new or important.


Take care and be well. - JimA

Jim - Friday

Today has been a much slower day. They put me back on tha lovenox - but a much lower dose. Now it is only one 60 mm shot vs to shots of 180 mm. And, yes, I gave myself the shot. They still have me on oxygen and it sounds like I will go home with both the shots and the oxygen. They are talking about maybe sending me home this weekend.

Apperently, the current plan seems to be to see if the lovenox will help to break up the clot. In the meantime, the oxygen will help me to feel better. Then, in a few weeks, they can make a judgement about whether the clot is breaking up. If it isn't, they can consider other options.

My appetite is back closer to normal - steroids. Since I am eating, my energy level is coming back and I feel pretty good.



Take care and be well. - JimA

Thursday April 30

Well, today turned out to be a very busy day. As usual, it started with the "Greys Anatomy" team of docs coming to see me. First, they took me off the lovonox - the shots I just learned to give myself in the belly. They said I would be getting an ultra sound of my legs to determine if that is where the clot in my lung came from.

They planned to insert an interior vena cava filter in the vein. The interior vena cava passes blood from the lower extremities into the atrium if the heart. If the clot comes from the leg, this filter would stop additional clots from reaching my lung or heart.

Also, an IV was inserted and I was put on a heparin drip (a different blood thinner).
Within an hour or so, the RN was instructed to stop the heparin IV drip. Since the IVC filter procedure would likely be soon depending upon the leg ultra sound.

Shortly after, I was picked up and taken for the ultra sound on my legs. The ultra sound apparently clearly showed plaque buildup behind my right knee - which most likely the source of the clot. I was informed that they would insert the IVC filter today.

Then, I was visited by a urologist to discuss blood that I have had in my urine. They scheduled me to go back to ultra sound - this time for an ultra sound of my kidneys and bladder. They apparently want to rule out issues in those organs.

Right after those ultra sounds, they transported me to have the IVC filter insertion. This involved entering through a vein in my neck and going down through that vein to a point about belly button height in my back. When they reached the desired spot, the filter expanded like a butterfly bolt to provide a filter to prevent passing of future clots. Not painful, but kinda odd procedure.

Also, around lunch, I got a visit from Marla, Jeff, Cindy and Melissa (all work for me). We had a very nice visit and it was great to see someone other than docs and RNs.

Very shortly after, Jill came in. Unfortunately, I didn't get to see her for very long before they showed up to take me for the ultra sound and for the IVC filter procedure. Shortly after the procedures, my dad and his wife, Rheta, were here to visit. So...it was a very busy day.

Hopefully tomorrow, the docs will come closer to a solution for the pulmonary embolism. It is very good that I am feeling much better - I'm sure partly due to restarting the steroids. But, for now, I'll take what I can get.

I am sure I have left off something - but, covers everything in general. So...I'm going to try to get a good nights sleep and just see what tomorrow brings.


Take care and be well. - JimA

Longer in hospital

Well...I really feel like Gilligan. I came for a normal follow up doc appt, ended up being admitted for overnight observation and I am now told I will be here for "a few days".

When the "team" of docs came by yesterday morning, they informed me that I "will not be going home today". Isn't that special? Apparently, the pulmonary embolism in my left lung is pretty big and they need to firm up treatment. Some type of surgery might be needed.

I gave myself a shot in the belly - who woulda thought? I don't remember yet the name of the med (something like lovonox); but, it is a blood thinner. I will need to give myself 2 shots each morning - apparently the dose is too high for one shot.

They have also started me back on the steroids. While I didn't really want to be on the steroids again, I suppose it's best since I will probably feel much better.

Also, they have me on oxygen - apparently, my oxygen level is low. I assume this is due to my left lung not taking in enough oxygen due to the embolism.

I haven't had to take another of the huge horse-sized potassium pills.

So...we'll see what the team has to say this morning, Thursday.


Take care and be well. - JimA

April 28

Today Jill drove me to me follow up appointment with Dr Henderson - my radiation oncologist. We were to simply follow up on my status since radiation. Before long, after discussing my side effects, Dr Henderson called Dr Einhorn and they decided to get a CAT scan with a special contrast to enable them to see blood clots (embolisms).

So...it turns out that I have an embolism in my left lung. Apparently, this explains why I have had problems with shortness of breath.

Now...are you ready? So - went from going in for a normal follow up appointment to being told that I would spend tonight in the hospital. The docs want to get me started on blood thinners that will apparently work to break up the blood clot. By observing overnight, they can ensure that things get started properly. Then...now get this carefully...I will give myself daily shots of the blood thinning med.
In addition to the embolism, I have an elevated white blood count, very low potassium and high liver enzymes (whatever that means). So, they will work on those while I am in the hospital. I've already taken two potassium pills that are the largest pills I've ever taken - by 2 times.

So, even though it was a surprise to come in for a normal doc appointment only to end up spending the night in the hospital, it is nice to understand why I've had such shortness of breath. The embolism would not have gone away without treatment.

I saw Dr Einhorn this afternoon and he told me that the Tarceva appears to be making progress on my lung. Since the embolism is in my still clear left lung, he wants to clear it up asap. Even so, it will apparently still take as long as 6 months.

I will spend tonight being stuck a few times. I am wearing an oxygen tube and a designer hospital gown. It's a great look! I've already had my dinner of hospital food - I chose breakfast foods.


Take care and be well. - JimA

I am pitiful

I see it has been about 11 days since I posted. I have spent most of that time sleeping. I got to the point that I emailed both Dr Einhorn and Dr Henderson about my status. They both said my situation is normal and that I just need to be patient - not easy for me.

So...here is the situation...I am in the middle of what I would call extreme fatigue. Just about any time I sit or lay down, I just fall asleep. Most muscles have a low level ache. In general, I have no energy. I still have the scratchy soreness in my mouth and throat - though, not as bad as the thrush. Both doctors agree that the side effects I am feeling are from the radiation. I see Dr Henderson tomorrow. So, we'll talk about this some more when I see him.

I started Tarceva (a targeted chemotherapy drug) on April 18. So far, I haven't experienced any of the possible side effects of the drug other than very minor diarrhea that was quickly controlled by OTC Imodium.

I have not been to work in a couple weeks since I can't safely drive.

Since I haven't done much, I don't have much more to update for now.

fatigue

Well, I haven't posted in a couple days. No good reason other than not much has changed. I did actually have one day without foot pain. But, then, the neuropathy kicked in. But, since I had to just get used to the neuropathy, it shouldn't be too bad.

The thrush is gone and now I am still dealing with a little pain in my throat that is from the radiation. At first, the pain was pretty rough and they gave me a liquid med that I slowly dropped in the back of my throat. This gave really good relief before eating. I am now to the point where I don't use it much because the pain is significantly reduced.

My mouth dries out constantly. Sometimes tough to talk when my mouth is so dry. But, I try to remember to always have a bottle of water with me and that give temporary relief. Also, I am back with the cough. Luckily, cough meds can somewhat control it. During the day, I only use Robitussin - DM since it doesn't make me drowsy. At night I use the Rx cough med that has codeine since it doesn't matter if it puts me to sleep.

Other than those things, my biggest issue is fatigue. And, I am talking fatigue all the time. Last night while we were watching TV shows, I nodded off and ended up sleeping 2 1/2 hours. Hopefully, things will work out as the doc has said - he thinks that the various symptoms should begin to subside in a few weeks and that I should get back to how I was feeling before radiation.

Things are going well with plans for a business blog. Simon is supporting my plans and we are working on content so we have enough before going live with the blog. I am looking forward to getting it going and I think it will be a satisfying thing for me.

shopping and napping

What a day! Started out feeling kinda good. Swelling is down on my ankles. Now that I know that the throat is not thrush any longer, it is much better since I can just use the "secret" compound to numb my throat before I eat.

So...we decided to head down to the outlet mall. Of course, I didn't walk the whole place. But, did do quite a bit of walking and shopping. By the time we hit the last store, I was pretty pooped. We headed back to Indy, stopped for lunch and, then, back home. When we got home, I hit my LazyBoy for a nap. I guess most people would call 2:30 to 8:30 a bit more than a nap!

Tomorrow is Easter. We are going to Kelties with Connie and Jake - great holiday brunches.

saw the doc today

I emailed Dr Henderson because I thought the thrush was still in my mouth/throat and needed to discuss a few other side effects. Arranged to see him this afternoon.

First, he informed me that the thrush is gone. The pain is apparently a radiation side effect - no longer thrush. That means it could still take a few weeks to completely heal. He gave me a liquid compound that I can use before I eat to ease the pain as I swallow. Same thing goes for the tenderness I have felt at the outside edges of my eyes - where I have been tearing quite a bit. Apparently, in both cases, in order to include the entire brain in the radiation treatments, it is necessary for certain areas to be hit by the radiation.

Next, I have been feeling pretty considerable pain in my feet. It isn't the same as the neuropathy. Sharper pain when I walk and considerably more when I take off shoes. He thinks it is some kind of tendinitis and suggested that I try some stretching. But, he isn't an expert in that area and suggested that I see Dr Forkin if it continues.

Apparently, the sores I have been getting on my head are normal reactions to the radiation - like sores from a sunburn. Just keep putting on neosporin until they heal and realize that more could come over 3 to 4 weeks. That means another week or maybe two.

So...the good news is no more thrush. But...the throat pain continues from another source.

Full day at work

Got lots of sleep yesterday and last night. Woke up early enough to have pretty much a full day at work today. Had oatmeal with some blueberries for breakfast at my desk - along with a couple of Dunkin Munchkins. I have some cough - but, I think it is clearing out the gunk from the thrush in my throat. I think the swelling in my feet might be down a little. Might be able to wear regular shoes within a couple days. Good energy for most of the day - started to fade a little by the time I got home.

worse, nap, better

So...just a lazy Sunday. Didn't sleep very well last night. Cough has kicked up - probably because yesterday was a no-steroid day. I suspect that the steroid was helping to control the cough. When the cough kicked in, it totally kept me from sleeping. So...I finally took some of my Rx cough med and headed downstairs so I wouldn't keep Jill awake.

In the end, I did get some sleep - as did Jill. When I finally got up around 10:45, I kinda felt like crap. Foot swelling was back up. Throat and mouth were gummy, dry, scratchy and generally yucky. Luckily, we didn't have anything planned and Jill said she was OK with a do-nothing day. That is usually difficult for her - she is not a person to sit around.

After doing nothing for quite a while, we decided to do even less - we laid down to take a nap. I took some cough med and we laid down. Turned on the overhead fan for a little breeze and I was out. When I woke up about 5:45 I felt so much better. Still have the problem with the cough - but, I took 1/2 steroid this morning and I think that helped. I guess I can expect that kind of up and down when I go from 1/2 steroid to no steroid days. The weaning schedule has me finally finishing the steroid this coming Thursday.

Jill made tortellinis in broth again tonight. Love it!! My appetite is closer to normal now that I am well into the steroid weaning schedule. But...the leftovers will make great lunch at work and will be really easy to heat up.

happy to be a bit better

Well...I felt kinda crappy when I woke up today. But...later this afternoon, things are looking up. It seems that the swelling in my feet is a little better. Today is a no-steroid day in the weaning process - so, I imagine that has helped. The thrush is still in my throat; but, it seems to be a little better. I can swallow without it hurting like all get out.

My brother, Tony, and his wife, Dana, stopped by yesterday on their way to see Dad and Rheta. We went to dinner and had a nice visit last night and this morning. Plus, it's always nice to share Dunkin Donuts!! It was nice to get caught up on some family news since I am generally not really in the loop on that stuff. We just get wrapped up in our day-to-day stuff and keeping up on my family just doesn't happen. Jill talks to her mom literally everyday; so, she keeps up on her family. But, that just doesn't happen on my side.

After they left, we had a good day of errands. Headed to the east side to Gordon Food Service where I was able to really load up on fruits - particularly frozen whole and sliced strawberries, blueberries, blackberries. They were sampling preboiled/peeled eggs - and I love hard boiled eggs. They have a May expiration date and I think I can get through them before then - so, I got a box. Jill got some cookie dough and we picked up some meat ravioli to try. It was a good food day.

I learned from Dana about how libraries now apparently offer downloads of books that I can put on my new netbook and listen to the book with headphones. I have been having difficulty focusing on reading and haven't read a fiction book since chemo. I think listening to the book might be a good option. But, I found out that my library card wasn't good any longer - been a while. So, we also went to the library today and got me a new card. Then, this afternoon, I went to the library website and started the process to be able to download a couple books. We'll see how it works out - I am hopeful.

Jill

I decided that today's post should be about Jill's status since mine is pretty much same old same old.

Jill visited her amyloidosis doc today after having given the usual blood and body fluids for tests. This was her first update since mid-December. And, thank goodness, the news is that she continues to be stable. Happily, on a day to day basis, she is doing well and that sure is nice since she sometimes needs to help me with stuff.

Re: her kidneys, obviously she continues to be in stage IV kidney failure; but, that has now been the case for around 3 years. Every time she sees her kidney doc, they seem to think it might be time to prepare her to start dialysis. And, every time it turns out that she doesn't need dialysis yet. Apparently, at her last visit, the various blood measurements that they use to determine kidney function are still about the same as they were 3 years ago.

I firmly believe that her strict monitoring of sodium, phosphorus and potassium have kept her hanging on at her current kidney status. She doesn't even pay attention to what her daily allowances are for this things - she focusses on simply taking in none.

So...in my daily routine of dealing with elephant ankles, thrush in my mouth and throat, and other minor irratants, Jill keeps hanging in there and doing well. What luck and what a break for me!!