Too sick to be poisoned

Sorry for my lengthy silence. And I warn you there will probably be more gaps through the year. I haven’t forgotten, I haven’t gone away. But life is rather unkind, and I will need times to step away and live through the storms.

Today the storm feels quieter. Why? My husband was too sick for this round of chemo. This seems like it would be bad news, but as I’ve been monitoring his symptoms the last few months I have found that chemo is taking waaaaayyy too much out of him. When the symptoms were so bad he became suicidal I broke. He needed to discuss options with his doctors. The treatment was doing more harm than good. I went with him to his appointment this time and watched as he nonchalantly described the basics of his symptoms.

“Tired”

“Cold”

“In pain”

Dr took note. Anything else?

“Yes!” I yelled. “So tired we’re lucky if he can stay awake long enough to watch a movie with his children. So cold our house is heated to an extreme and he still can’t leave his numerous blankets. So much pain he can’t do simple tasks. He is stumbling. He is struggling to breath. He is loosing his eye sight. He becomes so discouraged that he begins to feel suicidal. He has NO QUALITY OF LIFE. This is not okay!”

The Dr looked at me in shock for a moment then pushed hubby for more details. Apparently unaware that he can shrug off such severe symptoms so easily when discussing them in these appointments. Turns out the symptoms have become severe enough that they did not feel it medically safe to give him chemo this week. His body needs a break. He did his other cancer treatment and they adjusted some meds. Moving forward they will be on speaker phone with me for all appointment since apparently hubby doesn’t speak up, and they don’t push for enough details.

I should be mad, stressed, scared. And I am. But today I am mostly happy that I get to see my husband again. The med adjustment and quick chemo break did the trick. He is him today. I have not seen him like this in months. Enough energy to play a board game. A slightly higher appetite. Greater mental focus. And more laughter than I’ve heard in ages. He was too sick for chemo and so for this short moment I have my husband back. I’ve missed him so much.

Please always be honest with your doctors. Describe the severity of your symptoms. You are not complaining, you are giving the necessary information. The treatment could have killed him faster than the cancer because he didn’t want to complain. I complained for him and now his body gets to heal for a couple weeks and regain some strength. No matter how short this time between rounds, for today I will dwell in the joy of having my husband again.

A welcome turn

Stepped into the same ER as we did 5 months ago. Got brought back just as quickly as before when the triage nurse saw his level of pain. Had the same ER doctor come in to the room. And as she stepped in she stopped. I’ve treated you before, haven’t I? He looked and said yes, that she was the one who found his cancer. She asked prognosis, current symptoms, and immediately put in orders for pain meds and a CT. I saw the same concern on her face as the last time when she ordered pain meds and a CT. Last time for his colon where she found multiple large masses, this time for his head where he was having the severe pain. It was all so similar, and so frightening.

I vividly remember 5 months ago, sitting in the chair next to hubby’s ER bed while they hook up his IV. Waiting in that chair while they take him for scans. And finally seeing the doctor return with results, closing the door I didn’t know the room had before closing the curtain usually used as a door and turning to us to explain what she found. That time led to a week at the hospital, a cancer diagnosis, explanation of stage 4, massive surgery, and a rollercoaster of pain and emotion that we still face.

Today I sat in that chair next to hubby’s ER bed while they hooked up his IV. Waited in that chair while the took him for scans. And then sat there anxiously staring at the door you wouldn’t know is there unless you’ve seen them use it. Desperately wishing it to remain open. I couldn’t handle going down this road again so soon. Even if I could handle it, I don’t know if he can. His mind is breaking.

Last time we sat through unspoken fear of colon cancer, this time the unspoken fear of it spreading to the brain. The doctor came back but the door remained open. Scans are clean, labs look great (considering). But she still admitted him. She wants another doctor to take a look, and beyond that just to give his body a rest. She is promising pain meds, anti nausea meds, and anti anxiety meds. And as the first batch went in his IV I slowly saw him sink into a gentle sleep. He is calm and resting, his pain managed, and when last I left his room he was keeping down what he has decided is the most delicious cranberry juice. The first thing he’s kept down in days.

It’s likely that the symptoms are just from the chemo, but it hit so hard and wasn’t letting up that we needed to get him in. What has me most concerned is the occasional moments of confusion or lapses in memory. It’s not normal for him, and started before these other symptoms. So they’re looking into it. I’m relieved that the brain scans are clean, and that he will be able to rest pain free even if just for tonight. This trip to the hospital had a much better turn out then last time. But I feel it will continue to loom over us every time we have these ups and downs. But right now I will sleep easy knowing he is safe. And tomorrow I will hopefully be able to take him home.

Sometimes you’re paranoid for a reason

Just over a year ago I posted this. A description of my fears into the void in hopes of easing my own mind. My husbands blood work came back with some abnormalities. He was doing monthly blood work at the time to keep an eye on his response to a new diabetic medication, so to have abnormalities show up suddenly within a month was concerning to say the least. His GP referred him to a hematologist, whom we quickly discovered was actually an Oncologist. Fears grew. He was also scheduled for some additional tests and scans. I continued to “accidentally” find my way to WebMD through google searches, and continued to find he had symptoms of a few serious illnesses including colon cancer. I kept reminding myself that if we diagnosed purely through WebMD we’d all be diagnosed with cancer. So I pushed back my fear.

Day of the appointment came, tests results from the few they did were available, and the Hematologist/Oncologist showed no concern. “It’s just Anemia, the other abnormalities are from the lack of iron. Sometimes this pops up suddenly, don’t be worried we just need to get you on iron supplements.” He went on iron and followed up exactly on schedule. No change. “Your body just doesn’t absorb it well. We’ll put you on a higher dosage.” The next follow up appointment showed the iron in his blood went down. “Don’t worry, we’ll get you in for an iron infusion. It’ll take care of it and you’ll feel much better.”

So hubby walks into the office the day of the infusion and they explain that it’ll cost $5000. He asks what kind of payment plans we can do and they say none. The amount must be paid in full before any treatment is done. He continues to try to work with them as we don’t have the money and the doctor had said he needed this. “Sorry, but we don’t do these infusions until paid in full. We’ll go ahead and cancel the appointment and reschedule for when you are ready.” The doctors office continued to call for a while to explain he needed to go in for the infusion. Once he did they would schedule his follow up with the Hematologist. He stopped responding to the calls after a while as they still wouldn’t do a payment plan. He continued to work with his GP, continued to do blood work, always was honest when describing health and symptoms. The GP never seemed any more concerned than the Hematologist/Oncologist, so we trusted them.

April of this year his GP bumped up his iron supplements again as he still wasn’t absorbing it and a week later the occasional stomach pains he’d had for so long grew more severe. After a year of unspoken fear and trusting the doctors instead of my instincts I finally got him to agree to go to the ER. He had been unable to move for 3 days because of the pain of what he assumed was iron poisoning from the increase. The admitting nurse said “well, that could be it, but they’ll run some tests I’m sure to determine the cause.” She looked concerned. The ER doctor listened to his symptoms and asked questions finally asking “And your doctor hasn’t looked into this further?” She got him in for a CT scan. The scans showed dark spots on his colon. She said he would be admitted for further testing, but until they get the results from a biopsy there is still room to think positive. She too looked concerned.

Within 5 minutes of getting to his hospital room he had a gastroenterologist, hospital GP, and his previously seen hematologist/Oncologist standing in the room. They all looked concerned. As the first two spoke on what tests they would do and then left to go schedule them the Oncologist stayed and said “this is why you were supposed to do the iron infusion. So you wouldn’t end up in the hospital.”

Five days, two biopsies, three iron infusions, two blood infusions, and one major surgery later we had answers. Colon cancer, stage 4. A year ago I feared his symptoms were colon cancer or similar, but I choose to trust the doctors instead of speaking my fears. He now has no chance of remission from one of the most treatable cancers because it took too long to diagnose. It is so easy to beat myself up for not pushing for more tests, but that takes energy away from a family that needs me. It is even easier to be furious with the doctor, but he doesn’t care so why bother. Instead I focus on treatment, on hope that doesn’t exist, on taking care of my two young children while my husband lies in bed suffering the symptoms of cancer, surgery, and chemo.

But I learned from my paranoia mistake. The Oncologist wasn’t answering our questions, and was ignoring other symptoms. I didn’t ignore my instincts this time, I changed doctors. The new oncologist had the same reaction as the ER doctor. “He didn’t look into these new symptoms? He didn’t run more tests after your diagnosis? He started chemo that soon?” Turns out the original Oncologist did not preform standard scans to find a baseline which would show the effectiveness of chemo, he started chemo two weeks sooner than he should have after surgery, and he ignored pain that showed possible signs of spread to the bones and spots showing possible signs of spread to the lungs. He also omitted information on a more cost effective way to do chemo that has the same results.

Hubby got all the scans done with the new Oncologist and he has tumors covering his liver and lungs, but fortunately none in his bones. He now has a baseline and while they can’t switch chemo types yet they will with his next round to save him both time and money. He now has a pain specialist, a new GP, and a psychologist who all partner with his new oncologist. He now has the treatment he needs. Too late because of my ignoring my instincts, but hopefully soon enough to elongate his life.

WebMD won’t always be right. It’s usually not cancer. But it is better to ask and push for tests. Be sure to rule it out before assuming the doctor is always right. Trust your instincts even if they turn out wrong. I learned a hard lesson and my husband will now pay the price for that. Beating myself up steals energy from my family but secretly I may never forgive myself. Don’t make the same mistake I did.