• sarah@healingeyes.org

Author Archives: Healing Eyes

Don’t feel what others say you should

The problem with public blogs is that once you share it you can’t unshare it. So that means you start to censor yourself to protect those reading. It’s hard when you want to be brutally honest and reach out to other cancer survivors that you know need that reassurance and feeling of not being alone. You aren’t alone!! What you feel is normal and far too raw to ever put into words for others to understand. Don’t feel bad when others just don’t get it or don’t know how to react to your anxiety, stress, silence, isolation, I could go on and on.

It’s interesting ..doctors don’t say “cured” anymore. Gives a false sense of comfort I guess.
No sign of disease, no detectable disease…what the hell does that do for our state of mind.

Wait another 4 months and do more scans ..

Ok…so that means we will try to enjoy summer and not think about that scan. Oh wait, no we also have to figure out how to fricken eat again. Since chemo andy is struggling to get his calories in. Figuring out the balance of portion and type of food. Oh and also let’s try and maintain that we are surviving and functioning in public while hoping this nightmare ends. Oh and the poor pups, they only feel the pain 24 hrs a day, they are gaining weight and becoming so depressed. My little yoshi is a pain sponge, he is taking it so hard.

Up side we are at home and not in the hospital yet…maybe this weekend we will sleep all day and night and forget for a moment the unspoken and unwanted guest that won’t ever leave.

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Healing Eyes

Mediocrity

Yay our first good news…our income taxes didn’t get denied, yay! I now am an expert at filing adoption expenses because this year they took my paperwork with no questions asked! Yay!!!

Other good news um…um…andy isn’t in the hospital at this moment in time! That’s something !
I think from now on we will base success on not going to the emergency room and not build up expectations too high. Low hopes equals less disappointment:) live in the mediocre haha.

Healing Eyes

Maybe.. Breathe held in

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Yummmmm… Thanks for dinner joni and Brian and Murray! Andy eats way better at home than in a hospital. We are home now and Andy is doing better. If all goes well we hope the blood thinners keep doing there job and get rid of the clots. If things get super better we really hope Andy can try going to work again. But first things first a couple more doctor visits, do the doctor shuffle, and get a letter saying Andy is healed. But we can’t think too far ahead since every day is a surprise now. Fingers crossed Andy can start using his non chemo brain and getting active again which should all help with the pain. Distractions are good… And working is even better.

Healing Eyes

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Snowing outside and palm trees inside

Healing Eyes

Big surprise

It feels like a broken record but we spent the night at saint Mary’s again.
We had some scans scheduled Friday night here and they ended up finding a pulmonary embolism in the lungs. Just shows that when you think it’s just a set of scans and you plan to go home afterwards that you may not. They say blood clots are common when you aren’t very active and chemotherapy didn’t help. So not life threatening…just means after this we really need to work up to more activities to keep the blood moving.

Luckily some great friends begged to drive us to this appointment, well maybe not begged but were very willing to:) it helped make the unexpected situation more bearable. Now I have their car so I’m thinking road trip to Marquette!

We were a couple hours back in ER and they decided to admit us overnight. Unclear as to how many nights but we are settled in again at lacks cancer center. Not the same room though, that would be way weird. So partaaay at the cancer center !

Healing Eyes

You can fix what?

A turn of events.
I am sitting in a quite uncomfortable chair in a very large waiting room. All I can imagine is the amount of germs swarming around me. At the cancer centers I felt safer… It was a crowd of people I knew were walking a similar journey. But here at a pain clinic I am out of sorts. The people in this waiting room don’t look sick… They hurt I’m sure but who knows for what reason.
It’s amazing how one gets used to a certain level of medical treatment and environment. I don’t like this place.
We came for a consult but it quickly changed to a ‘routine’ procedure as the doctor put it. Nothing has been routine for us, all the doctor visits have not been routine, the last months have been far from routine.
But I hope this will ease Andy’s pain. It’s a simple procedure I guess, a nerve block. Drawn out on the medical paper roll spread across those patient tables in any routine patient room… The doctor scribbled a crude drawing of a rib cage and the nerves that hide under them. Explained a walk the plank analogy of how he finds the nerve, stepping off a rib to find a nerve. Easily done, wham bam thank you sir procedure.

Okey dokey than let’s try it!

Now I wait.. Watching the tv of a documentary on wildlife in the ocean. My stomach is growling, am I allowed to complain? Can I grumble about my sore butt and back? They don’t compare to Andy’s pain so no I can’t. I will be silent and love unconditionally.. If we can just get past this physical pain.. This last step.. Then I think we will be ok.
If cancer comes back oh what pros we will be! What more can be said… One day, one grumble…. At a time ūüôā

Healing Eyes

another long day

Surviving Cancer after diagnosis. Begins at diagnosis…

http://www.gastriccancer.org/html/livingGC.html

Andy’s endoscopic procedure today went fine, The doctor said the connection looks great, no signs of concern. Waiting on some¬†biopsy¬†results but I’m concerned about it. The wait during the procedure was what I dreaded but thankfully a close¬†friend¬†came to the¬†rescue¬†and hung out with me during it. I decided to accept help because I knew today would be exceptionally hard being that this doctor was the one that found the large mass to begin with. We came full circle and I wasn’t going to sit alone waiting for the answer this time. So big thank you to that friend who took time to distract me from the seriousness of the situation. I know Andy appreciated his Sarah being taken care of.

Andy is recovering now from the anesthesia and side effects of not eating for over a day now. I feel bad he hurts and I can’t do anything to help.

I love my Andy even if I say it a billion times over. He is the strongest dude I know and tomorrow will be better…because it’s not today.

Healing Eyes

dusty

It’s so surreal looking back at the past 7 months of our life.

I get asked questions sometimes,
“What’s the game plan, Whats the next steps, What happens when its over and you can be happy again”?

I smile and my mind goes blank because there is no answer really. Cancer is something that can never be answered or fixed¬†ultimately.¬† Doctors can remove the tumor and prescribe medicine, they can’t erase the damage. I struggle with thinking of ways to explain that to others without sounding uncaring or utterly depressing. All I can say is it never will really ‘end’, this is the part in our several months of treatments and surgeries that I think will be the hardest and most¬†challenging. ¬†When the dust settles usually you just clean up and move on. When our dust settles we just look at that dust and try and think, ok now how can we live with this dust in our lives, the dust lingering in our lungs, and its presence hovering over us like a murky cloud of unknowns.

This week I think will be our last scans for awhile now. It already feels like the nurses and doctors are ready to push us aside for others in treatment. We are ‘without any detectable disease’.. that’s how one doctor put it when I asked, “so what do we tell people, does andy have cancer?” It’s a way to say we may have disease but its not visible to the human eye ‘yet’. So you just wait it out and see if any of that murky dust falls again and then we’ll sweep it up and live another day.

It’s hard writing this blog now.. I can’t write what I don’t know .. then again no one can really write there future down and expect it to come true. For all we know the dust could blow away and this will be are¬†only¬†brush with detectable disease. But how does one brush away the emotional damage caused, those memories of long nights in the hospital, of chemotherapy treatments, the fear that they could come back. I suppose we just try to not think of it, try live a new normal life, go easy on ourselves and breathe a sigh of relief that we made it this far together.

We do start some much needed physical therapy next week, getting a free membership to a health club where Andy get’s some cancer well fit classes free of charge. It will be good to get out of the house and doing something together that’s not hospital related. I love¬†exercising, I love my Andy, so that equals good times.

Healing Eyes

Silent wait

Back in the ER again. That’s a record for us. Twice within a week.
This time they are concerned about the numbness in his legs so they are doing a mri of the spine.
God I hope they find nothing! Please no more bad news!

I’ve noticed a trend. ER nurses usually aren’t as sympathetic as cancer nurses.
I think or wonder if nurses get training in empathy for all types of illness..
It would help make visits more bearable I think.
Of course I’m sure there job isn’t easy and they get alot of complainers and difficult patients so I can’t be too hard on them. It’s just so tiring going thru all the same questions and revisiting of past wounds that haven’t healed.

By far I would have to say the nicest are those at both cancer Centers. They see how awful cancer is for the patient and the caregiver. Gives them the advantage I guess.. I could never do their jobs, my heart is nearly fried from the past months of hell already.

There is no finish line in all of this. Just endless scans and revisits and hopes that nothing comes back.
The silent wait… Lack of closure… And prolonged What ifs.

Embrace the moment.. Every day can throw the unexpected.. Good or bad.

Healing Eyes

series of events

Recap on the weekends series of unfornuate events are as follows (via the perspective of Sarah the caregiver)..

Saturday evening noticed a change in andy’s behavior and pain level. He had a small fever, more confused than usual, and the new pain meds weren’t cutting it. So as a frantic wife does I called up the emergency doctor on call that evening. An hour later we were back to nothing.. the fever was gone and the doctor saw no cause for us to fret.

Night progressed.. I took my sleeping pill and dozed off.. I then remember andy standing over me saying ‘wake up..mumble mumble..something about egyptians’. Ok that made no sense. I stumble up and see what is going on. Andy is standing in the kitchen and he looks feverish and in pain. I grab the good ole thermometer and yup 101 degrees. Ok not panicking yet since thats not the magic number.

To anyone who doesn’t know the magic number you are told when you are on¬†Chemotherapy¬†it is 100.5.

Few minutes later I check again.. 101 .. then 101.99 .. then 103 .. then 103.99. Ok now something is¬†definitely¬†wrong. Start calling the doctors and then wait for one of them to call back. Meanwhile I check again and his fever is dropping.. GREAT .. now when a doctor calls me back I’ll look like a fool¬†because¬†he has no fever.

Eventually someone calls me back. Not the doctor I was hoping for but good enough..we get the cue to go to the ER. I start pacing back and forth, which hospital (because¬†we have 2 different doctors at different hospitals). My gut says go to St Mary’s ER¬†because¬†that’s where the surgery was and that’s where the most number of doctors are that know us. Plus if we get admitted than I already know the place like the back of my hand.

I drag Andy to the car, he isn’t very coherent which makes it actually easy to persuade him to come with me. We pull into the ER drop off zone and Andy steps out of the car where a security officer grabs him a wheelchair..I leave him behind and find a parking spot. We’ve doen this before so I have my emergency bag of knitting to keep me busy that I run to the main door with. I find him at the front desk talking to the receptionist. The lady asks our name and asks our problem. I say ‘CANCER’ long pause ¬†‘FEVER’ ¬†long pause ‘Insurance card please’. The receptionist asks what type of cancer, I guess she had cancer and wanted to tell us to stay positive. Yea ok, thanks.. we’ll do that right after we get thru this lady.

It must have been a slow morning because no one else was there.. we were brought right back to a private room and the questions began, the several nurses and various doctors of different specialities started there list of questions. Bla Bla Bla.. yes.. cancer.. yes.. no stomach.. yes fever.. yes I brought all his medications let me just spill them all out on the counter for you.

I learned there is such a thing as a portable X-ray machine! and I can’t be in the room when they do it, it’s quite interesting they wheel this large thing in and then turn the lights off and everyone steps out (except the patient ha) and then the push the bottom from this long extension cord that looked like an old rotary phone cord.

Next thing I learned was what ‘Full Code’ means. It means yes please save his life at all costs, electric paddles and all. I guess we signed something saying that last time we were there and they wanted to confirm because Andy’s heart rate was ‘Full Flow’ (another new term meaning his heart was beating very very fast). His oxygen levels were dangerously low too, this was all very fascinating as they rattled on about heart rates and no oxygen and full code and save his life.. I of course said Yes please keep him alive:)

We had hoped we wouldn’t stay long but when you come in with these symptoms and you are still recovering from chemo they don’t let you walk out. We were admitted back to the ICU room. Down the hall from where we were during the surgery months before. We even had the same nurse as last time during the day shift…funny…full circle.

The official diagnosis reads : Fever, unknown cause. Some doctors said Pneumonia and some said nah it was just a little fluid in the lung. Either way it was something and some sort of infection but a butt load of antibiotics were prescribed… and then halted .. and then I’m not sure but the IV bags did lessen. Two days later we are free. Back to nurse Sarah and assistant Miko… and mopey Yoshi.

Healing Eyes