Re: On the whole, I've had better weeks

No, I hadn't, but I think it's still smart to get up out of my desk chair and move around during the day. Thanks for the reminder to do that. I tend to sit in front of my computer for far too long.

Impatient patient.

Re: On the whole, I've had better weeks

Duke and Lisa -
Yes you should get up and move around. Cancer has a tendency to make the blood clot differently, making you at higher risk for blood clots. I usually tell my patients, at least hourly when they are awake. At least stand up and march in place to get the blood moving. And then if you are traveling - especially by plane or car - to move around every couple of hours. In a car take break and get out and walk around, check out the sites, have a bite to eat. In a plane you can walk up and down the aisle. There are studies that show increased clots in people after flying or driving long distance even if perfectly healthy.

I do it too....sit in one spot, especially at the computer for too long. Usually the cat reminds me that she needs attention by getting in front of the screen.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: On the whole, I've had better weeks

Quick update:  had first post-radiation oncology visit yesterday.  My doctor said he forgot I was only a week out from finishing radiation because I looked so good (okay, so maybe I used a smidge of blush and some mascara).  But, I really think he was talking about my numbers. 

We're working on scheduling my post-radiation scans.  He wants a minimum of a month from finishing radiation to let inflammation go down.  True to my signature block, I'm an impatient patient - I think the waiting is torture.

My husband and I got away for a long weekend - both to celebrate finishing chemo/radiation and our 23rd anniversary.  Thursday, before we left, I spiked a fever, which is usually a sign my biliary tubes are clogged and going to start leaking.  They put me on 2 antibiotics and I held my breath and made it through the weekend (we debated not going and decided worst case scenario, I'd just have to get them replaced at an unfamiliar hospital, but, fortunately, that didn't happen).

On the flight out of town, my husband asked me a question about flushing my tubes (I flush them with a saline solution 2x/day).  Oh.My.God.  I totally forgot the bag of saline flush syringes!  And we were going to be gone 4 days.  Not good.

We landed and got my iPad out and started calling pharmacies.  Not something the chains carry.  Fortunately, one pharmacist mentioned there was a Walgreen's pharmacy within a cancer center hospital we were driving by.  Called it - yes - they had them, but they are prescription only.  Fortunately, they could call my pharmacy at home and get authorization to give me enough to get through the trip.  Note to self:  never leave home without them again!  Although, my oncologist is hopeful that we've killed off this bad boy enough that I can get the tubes out.  That would be so incredible - I don't know how to get through a hot Dallas summer without getting in the pool!

Anyway, that's the scoop from here.  Next up is scanning - in a few weeks.

Impatient patient.

Re: On the whole, I've had better weeks

OMG, Lisa, sound like you went through a revolving door. Glad you had a good weekend, Happy Anniversary and Happy done with RAD and by the way you do look good!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

Lisa....congratulations on your anniversary.  So glad you are able to celebrate it in style.  Seems that when we leave our homes for any amount of time, a checklist is in order.  I can't tell you how often my husband and I forget this or that or had to return home.  Glad you conquered everything - what would life be minus all the excitement? 
Awaiting test results as well as preparing for tests easily sets us in a spin.  We call it scananxiety and truly it lives up to its name.

Have fun, try to not think of anything but just that.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: On the whole, I've had better weeks

Well, scans set for May 9, which is also my parent's 61st anniversary. Figure that's a lucky day. They are set earlier than I expected. That won't quite be a month post radiation, but the scheduler insisted my oncologist wanted it done before my office visit in 3 weeks.

Impatient patient.

Re: On the whole, I've had better weeks

Lisa -
Sounds so good. Glad to here you got away for awhile. And don't feel bad about forgetting stuff. We went off one day and forgot all of Mark's meds but thankfully the infusion center was able to give him some to keep him comfortable.
So glad you are doing well post radiation. Mark is struggling so much and not feeling very well. I was thinking of trying a long weekend for my birthday (first weekend in May) but I am glad I didn't. He's certainly not ready for that yet.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: On the whole, I've had better weeks

I'm so sorry Mark is still struggling. I think our journeys are so closely linked in terms of schedule. I still don't have a lot of appetite and things still taste off, but that's the worst of it. My husband is making me do the evening 1.5-2 mile dog walking loop with him. I can't avoid it because "it's too cold outside" anymore. 

Hope Mark feels better soon!!!!!

Impatient patient.

Re: On the whole, I've had better weeks

And, PS, if anyone deserves a weekend away after the year you've had, it's you. Maybe you can swing a fun day doing something you haven't done before if a whole weekend isn't feasible.

Impatient patient.

Re: On the whole, I've had better weeks

First off,  happy anniversary Lisa.  So glad you two were able to get away to celebrate.  Even with all the set backs.  Sounds like all is well and I am sure the scans will go well too.   Next, I totally agree that Kris & Mark deserve a little time off too when he is feeling up to it and they can manage it.  I too am sorry to hear he is having a hard time of it.   Hopefully things will slowly start to improve.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: On the whole, I've had better weeks

Thank you, Lisa and Darla.
We go up tomorrow for labs and fluids. Also going to discuss alternate methods for feeding such as through his port. He doesn't want that so he is trying a little harder. I wish I could get him to walk even a 1/2 mile...right now I can't get him out of his chair.
We will get to do something soon, I know.
I am so glad though Lisa that you are doing so well and feeling pretty good. That's such a great thing.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: On the whole, I've had better weeks

Kris, when T started walking the ONC told him to start with just down the drive way and back and every other day increase the walk a house remembering that he had to walk back. Just a suggestion as sometimes even further than 3 blocks can seem like a mile to them.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

Kris....although rarely used for our cancer, we used TPN for my husband.  I realize it is not the best of options however; it allowed him to stay viable.  Just a thought.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

89 (edited by LisaS Tue, 29 Apr 2014 09:45:15)

Re: On the whole, I've had better weeks

So much for the few weeks off from being poked and prodded. Finished a 7-day Rx of levoquen prescribed after I spiked a high fever the day before we left on our anniversary trip (also on augmentin on a more long term basis to prevent infection in these bile drain tubes that I have a love/hate relationship with). The day after finishing the levoquen, temp spikes to nearly 102 and nausea. Back on stronger dose of levoquen. Despite that Sunday night, fever spikes again over 101.7.  And more random nausea.

My oncologist was so hoping to get through till my scans without having to exchange the tubes (8th or 9th set since October). He thinks they may be able to come out.  I was just hoping to go a few weeks without needles. 

But, with these fevers every few days, I'm checking in tomorrow at 7 to get new tubes. Good timing. My left  one (it's always the left one) just sprung a leak. So, definitely what's causing the fevers. Crud.

I feel okay other than when running 101+.

Impatient patient.

Re: On the whole, I've had better weeks

Sorry about the chronic infection from tube blockages! Best as you get them replaced. I've hear others on this board who had repeated problems had them regularly replaced rather than wait for infection. Can't recall interval.  Take care, Lisa!
Willow

Willow

Re: On the whole, I've had better weeks

Hi LisaS, wow some people will do anything for attention! JK
Sorry to hear you sprung a leak but best to get everything taken care of and perhaps it won't be long until the tubes can come out. Keep up with your wonderful attitude and humor! Good luck tomorrow.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

Mine have lasted anywhere from 3 days to eight weeks. My oncologist was hoping with the antibiotics and blood numbers looking good, I could stretch the average 4-5 weeks between exchanges a bit longer and get through my scans.

I just hate the fact I'll be awake during the procedure. I had a reaction to the anesthesia once and now I get about as much sedation as being at the dentist. Wait, I actually recall sedation at the dentist as even better (deeper) than this!

Impatient patient.

Re: On the whole, I've had better weeks

My husband had cataract surgery yesterday. He was such a happy camper afterwards. I don't know what they gave him, but I'd like some if that!

Impatient patient.

Re: On the whole, I've had better weeks

Just had my port installed last Friday and even with a bolus of the conscious sedation "juice" in the IV was was wide awake for the entire procedure....not my idea of a good time at all for that hour. I don't think he thought I was truly awake and would remember, because he said some things I don't think he'd have wanted me to hear in context to the procedure.  I've had conscious sedation work just fine before, so I have no idea why it didn't work this time, but it also didn't work when I had the liver biopsy either. 

Hope like anything that the procedure goes quickly and that they can give you something, anything to lessen the sensations.  Will be thinking of you and looking to see your post after you get it done and feel up to it.

Hugs from Iowa Girl,
Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: On the whole, I've had better weeks

Oh, Lisa.....think of us when going through this procedure; you have a tidal wave of love heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: On the whole, I've had better weeks

Lisa -
So sorry you had to go through it again. But you will probably feel better once it's done and the temp is down. Sending positive thoughts your way.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: On the whole, I've had better weeks

Tube exchange today went well. The "team" knows me and I know them too. By name. I even recognized nancy, the charge nurse, by her haircut when she was standing with her back to the desk when I checked in.

I was handled very gently. I told them I felt every tug and pull last time, so this guy took his time and did it slowly. Yay. Had to stay 2 hours on bed rest before being sent home. Got home about 1:30. My husband had to go to the office, so my 84 year old mom and 89 year old dad came over to babysit me. I napped all afternoon and I am going to eat a bit of dinner and fall asleep in front of the Mavs/Spurs playoff game. I feel very sore. Just took two Tylenol, so hope that helps. If not, I've got something stronger I can take later.

I weighed in the morning at 111.3, fully dressed. I wish they had weighed me when they did the labs instead of bringing a scale to my room and doing it in front of my husband. Boy, did I get fussed at.

It does seem my taste buds are a little bit more normal today. Hope that means food will start tasting normal, because I really don't have any more to lose.

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

LisaS I am glad it over but one thing I don't understand. Teddy had his tubes exchanged like every 2 - 3 months and they ALWAYS gave him a light sedation and he never felt a thing. Doesn't everyone do that? I am glad its over for now! Now go and get your fat on!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

A few exchanges ago, I had a moment when I stopped breathing with the anesthesia. That freaked them out. It freaked me out too, although I didn't know about it till later. So, now, they don't want to put me so far under.

Impatient patient.

Re: On the whole, I've had better weeks

A, HA! Wow, would they let you have a few Martini's? smile

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.