Weeks one through three of being home were spent just trying to remain comfortable at all times. I was on Vicodin around the clock. The instructions were to take 1 pill every 4-6 hours; I was taking 2 pills every 3-4 hours and it didn't even take away all the pain. This surgery was really rough on me. I've never had so much pain in my life. Several of my nurses in the hospital commented on my being a redhead means I need more for pain relief.
What I found most difficult and mentally and emotionally challenging during this time was dealing with so many new things at once. Recovering from surgery. Dealing with pain and having no energy. Having an ileostomy and learning how to care for it. And then the 2nd week home I got a yeast infection…in my mouth! Oral Candidiasis, from all the antibiotics I was on in the hospital. I got a prescription mouth rinse for that. And I knew that IV chemotherapy would be starting soon. I was in so much pain and having difficulty getting around the house that I had no idea what it would be like going in for chemo.
Within one month of my surgery there also were so many appointments! I had a followup with my oncologist, a checkup with a colleague of my surgeon who was on vacation right after my surgery, the home care nurse coming to the house every three days, a CAT scan of the chest, abdomen, and pelvis, an appointment for IV chemo teaching, then my first IV chemo appointment, a followup for my son with the GI doc, an appointment following my chemo for a Neulasta shot, and the followup with my surgeon. Not to mention picking up many prescriptions, being on the phone with my insurance company a lot to get claims adjusted or resubmitted, paying bills, calling the pharmacy, making all these appointments, etc. I wouldn't have even had time to go back to work if I wanted to! It was so frustrating dealing with all these things when I really only wanted to be at home, in my pajamas snuggled under a blanket and watching TV. Plus it's winter time so dealing with the cold and snow, having to wear boots and bundle up. Not fun for me. Of course my mom and my kids were a big help, and I loved it that my kids were on winter break from school during this time. I can't tell you how many times I wished I had a husband right now!
I had five minor incisions around my abdomen and one huge one along the same place where my C-section had been. Those places were painful, like very sore, bruised muscles. My entire right side was excruciating whenever I moved. My pelvic bones were very painful. My rectum hurt the worst, usually a dull pain but sometimes sharp too, and I couldn't sit normally. It was better to be leaning back on pillows. My bladder had a constant burning pain but several UAs always turned up negative.
I napped frequently. I was able to walk and do normal things around the house, save for bending, stretching, reaching, lifting, carrying, etc. I was able to make a trip out to the store once every other day or so, but I walked so very slowly due to pain, and I'd come home so exhausted and in so much extra pain than before, but I figured some exercise had to be a good thing.
At my two-week followup Dr. Witta prescribed me Oxycontin to help with the pain. I remember that day. I had to drive myself to see him for a followup, then to the pharmacy. I was in so much pain I was crying while waiting at the pharmacy. My entire body was so exhausted. I was weak from not having an appetite and continuing to lose weight, plus all the pain I was in. It was snowing and cold out. I just felt miserable, sad, depressed, and sorry for myself. The pharmacy said I could go home and they'd call me but I didn't want to have to come back out again, so I waited. But then there was a problem with my insurance. Long story short, I wasn't able to get the Oxycontin since I'd never had it before. The insurance company said I needed to take the next step up which was morphine. It took a couple days for it to get straightened out and I finally got the morphine pills. I found that I could only handle the morphine before bed because I wasn't able to stay awake on it so there was no point in taking it during the day. During the day I'd get by on my Vicodin, then at night I could take the morphine.
Dr. Witta ordered a CAT scan of my chest, abdomen, and pelvis in lieu of a PET CT which my insurance denied me again. I had a follow up with him and he gave me the good news that the CAT scan was all clear. He was standing there in front of me, so happy. I said, "But, just because you can't see anything…I mean, there could be tiny cancer cells somewhere and you just can't see them on the scan." And he said, "Well that's why you're doing the IV chemo. That will take care of any cancer cells leftover."
For some reason that hadn't registered in me yet. When he said that, the way he said it, the smile on his face, I just got tears in my eyes. I was so happy. I said, "So this is a good thing." He said, "Yes! This is a very good thing," and he gave me a big hug.
I was having a really good day that day. It was the day before what would be my first IV chemo session. Dr. Witta had just given me that great news and a hug. My son was right there with me and he was so happy for me. He'd gone with me to drive me to that appointment, at which I also learned that all my chemotherapy would be covered 100% by my insurance. This was something I was not expecting, but I was told it was verified twice on two separate days, with a printout outlining the details. Wow. Before my surgery I had made the difficult decision to change oncologists because I thought that Dr. Witta was out of my Tier 1 network, and I didn't think I could afford to have all my treatment be through him and his clinic.
I can look back now and see that things fell into place for a reason. Leading up to my surgery I couldn't get anyone in my benefits department to help me verify how my insurance was going to work, what I'd be paying for treatment, and so on. The person who said they'd answer my questions left the company and supposedly passed on my information to someone else, but no one else ever contacted me. All my phone calls and emails went ignored. I couldn't understand why I was having such bad luck.
Then after my surgery I was too weak and in too much pain to care. I was mentally, emotionally, physically, and spiritually drained and exhausted. I felt beat down, depleted, and just not myself anymore. So I didn't care. I figured I'd just stay with Dr. Witta and pay the extra cost, maybe have a payment plan worked out or something. Besides, in my heart I didn't want to leave him, I liked him very much, had already started treatment with him this far, and I was aware of and on board with his plan of care. I thought that changing oncologists midstream might just be too upsetting for me considering how vulnerable I was already feeling.
So I'm glad I stayed with him, especially since my only reason to change was what I believed would be exorbitant financial costs.
So that day, the day of the good news of a clear CT scan, David then drove us to his own followup appointment. A couple weeks before my surgery, David had to go to the emergency room. During dinner he got a piece of pork stuck in his esophagus. I assumed it was due to his tracheoesophageal birth defect since he'd often gotten food stuck over the years. Turns out he had the same GI doc, Dr. Morales, that night who did my colonoscopy back in September and who told me I had "a massive malignant tumor". He remembered me that night in the ER and by now I had a much better spirit about everything. I'd done my 6 weeks of chemo and radiation and now was 2 weeks away from surgery. He was genuinely happy for me, and that made me feel good because I had come such a long way in such a short time. Back in September at my cancer diagnosis I was so afraid of dying, and now I'm looking forward to being finished with treatment and cancer-free!
So on this day I was going with David to his followup. Dr. Morales discovered that David's food impaction wasn't caused by his birth defect but by Eosinophilic Esophagitis, or EOE. He explained to David that he'd have to avoid over-the-counter pain meds except Tylenol, and the 6 major triggers of EOE: Eggs, wheat, soy, fish, nuts, and milk, with milk being the biggest one. He also told David to take small bites and chew very, very well from now on and for the rest of his life.
I said, "That's what I always tell him but he doesn't listen. He just shovels food into his mouth! Can I have your cell phone number so that when David doesn't listen to me, I can hand him the phone and you can yell at him for me?" And he said an emphatic "Yes!" with a nod, and then said to David, "I will gladly yell at you if you don't listen to your mother!" We were joking of course, but David got the point.
After that it was getting late in the day but I'd promised David I'd take him for a treat, kind of a little date for the two of us. He wanted Griff's Burgers and he really enjoyed it. I wasn't hungry. Then Abby and my mom were calling us asking where we were since it was nearly dinner time. Later we went out for ice cream. It was a very good day and I was happy to be starting to feel like my old self again.
The next day I drove myself to my first IV chemo appointment. It lasted 4 hours. First I saw a nurse who took my vitals, then saw my oncologist who asked me questions and told me what to expect. Then I got the IV put in, some saline, some anti-nausea meds, and finally the IV chemo…Oxaliplatin. I'm also taking the Xeloda pills again, but this time it's 3 pills twice a day for 14 days, with 7 days off, then start them again. The pills will continue like this for the entire course. Dr. Witta said that I need to at least make it through 4 months of IV chemo and if by then my side effects do not stop after a few days each chemo week then we'd have to stop treatment but the pills could continue. I get the chemo every 3 weeks, followed by a Neulasta shot the following day. The shot is to help keep my white blood cell count up.
The IV nurses were a little concerned about me not having a port because they said the IV chemo is very harsh on the veins. For the first session the IV was placed in my right wrist. That's probably one of the worst places to have it, I learned. By the time I was finished my hand was completely numb and my wrist was very painful. My hand, wrist, and forearm were tingling like pins and needles. Hours later my right hand was still locked up.
They warned me about being very sensitive to the cold, like the outside air, water, anything I drank, and anything I touched. They said I would have minimal nausea if any, but I never had any. But that cold sensitivity? Oh boy. At home a couple days later I accidentally forgot about the warning and grabbed a can of soda from the fridge. I was holding it for about 4 seconds when it felt like my fingers were slowly exploding from the inside out. It was a pain like you can't even imagine. There is nothing else that feels like this except for maybe an actual explosion. From then on I remembered, and I use a towel or gloves when getting things from the refrigerator.
Washing my hands in warm water helps avoid the pain from cold water but then there's the problem of the room air temperature being colder than my hands, so after washing my hands I have to stuff them in my armpits or breathe on my hands or put gloves back on. If I'm going to sit and watch TV I'll keep a heating pad on my lap for my fingers. Thinking about this, I just realized I'm glad this only affects my fingers and not my entire body!
The day after my first IV chemo was the day of my first Neulasta shot. That is a whole other kind of weird pain. The shot itself was fine. I got a little lump on my arm but it didn't last long. That day was fine. By the following night I started getting a cramp in the back of my neck. By the third day I couldn't walk. The Neulasta is to boost my white blood cells but my counts have always been normal, so I wasn't sure why I needed the shot now. I've heard that if your counts do get low then you can't get your IV chemo until they come back up. I do NOT want that to happen, so I'm fine with the shot.
But anyway, Dr. Witta had told me the shot would cause bone and muscle pain, and I asked where. And he said primarily in the hips and low back. Well. Let me tell you. Bone and muscle pain are one thing, but certainly not the worst pain ever. Then there's nerve pain. I figured out real quick what was going on. The Neulasta working on my bone marrow was causing me so much inflammation and all that inflammation was putting the squeeze on my nerves. All of them. By the third day, any little movement had me writhing in a jolt of an electric shock that shot up my back from my hips to the top of my cranium. With each shock I was frozen in pain, afraid to move.
I found that I could not squat and could not bend at all. I had to move my head very slowly, and try not to reach or stretch for anything. That morphine pill came in handy at this time.
This shocking back spasm and nerve pains lasted until the 5th day and then I was back to normal.
I'd say about the 5th and 6th weeks post surgery I was back to normal and able to not mind doing more things for myself. I could do my normal routine in the bathroom, doing my hair, getting dressed, and starting to wear regular clothes. I could drive but it was really painful to sit in that position for long, or maybe it was just too painful being in the car at all. I decided to go back to work by the 7th week out from surgery.
About my ileostomy…I don't think I mentioned it much yet have I? Well, I'm so happy I had a home care nurse coming to the house every 3 days for a month. I was so frustrated the first 3 weeks trying to get a handle on how to change the pouching system.
While in the hospital my first lesson by the ostomy nurses was a blur. I was too drugged up and sleep to pay attention or even care. I figured it was pretty much a no brainer. But the problem came when they sent me home with "all the supplies you will need" which wasn’t the case.
There are two kinds of people in the world, those with pretty flat tummies and the rest of us. After having had two babies, one of which was a polyhydramnios pregnancy, a C-section, an appendectomy, and now colon cancer surgery and an ileostomy, my flat tummy days have been long gone for quite some time. Now I'm no physics engineer or anything, but why it never occurred to the ostomy nurses that once all the fluid that was swelling up my big huge belly went away, that I'd be left with my normal "baby belly flab". That flat skin barrier wasn't working for me anymore. My stoma would simply sink down below the barrier and my contents would leak under it onto my skin. I had no idea this was happening, not until three days later when it was time to change the whole system. I ended up with a bad rash around my stoma.
I didn't know there was anything but a flat skin barrier, but no matter how carefully I or my home care nurse put my pouching system on my belly, it leaked. For three weeks we tried, and then I finally got smart and found an ileostomy group on Facebook and asked them what the heck I was doing wrong. They all said "get a convex barrier, it conforms to the shape of your belly." Ok, that made sense. I asked my home care nurse if she could bring me some convex barrier samples, she did, and they worked. Whew!
The ostomy supplier already had an order for flat barriers and matching bags, so by the time I figured out which system I needed to change to, it couldn't be changed. Plus it was the holidays so that made it take longer. I ended up waiting a couple more weeks to get the right supplies. I was getting by on the various different types of samples sent to me by various suppliers, none of which had convex barriers until I did my own online searching and requesting of more samples. I even had a company in England send me a box of free samples! I felt bad asking for free samples from places I knew my insurance wouldn't cover, but I was pretty desperate for supplies.
By the 4th week out from my surgery when I had the followup with Dr. Strobos, he asked if I still wanted him to reverse my ileostomy soon or if I could wait until my IV chemo treatment was complete. It was his advice for me to wait the six months or so but it was very kind of him to give me the option. He genuinely was giving me the option, but after all the pain I was going through I was completely on board with waiting until my chemo was complete. There was just no way I could go through another surgery right now! He felt that it would be too much for me to go through while receiving heavy chemo, and I appreciated that. And now that I finally got my ileostomy care figured out, I was very comfortable with keeping it for a while.
What the ileostomy is is your small intestine coming out through your right-side abdomen. It looks so weird, like a little creature living on your skin. It moves on its own and has no feeling. Sometimes it sticks out real nice, but then it really just looks like a little penis or a tongue. And sometimes it retracts and lays more flat and looks like a slug. It's just like having a newborn baby. It wakes you up every couple of hours each night and it poops all the time. Ha ha.
How I empty it is what I saw the nurses doing for me while I was still in the hospital. They'd come to the bedside with a little plastic bucket and empty the contents into it, then pour it into the toilet, and rinse the bucket from the bidet. That seemed like a much more easy and logical way to do it than to sit on the toilet and empty it between my legs. Or squatting while standing and leaning over the toilet. Or on my knees on the floor in front of the toilet. Gross.
I'm not a crazy OCD clean freak but I am an OCD clean freak. Any of those other ways of dumping your ostomy contents into the toilet only results in splatter, not to mention it's not easy to do cleanup of the bag in that position.
Anyway, when I left the hospital I took that little plastic bucket with me. To empty my bag, I set the bucket in the sink and empty my bag into it, then wipe the inside of the end of the bag with squares of tissue until it's good and clean, then fill the bucket with a little water from the faucet, then dump it into the toilet. I can hold it in there far enough that it doesn't splatter. Then rinse the bucket with more water of course. I also sometimes rinse out the bag with water, which leaves the bag looking much cleaner. (I prefer having the ostomy bags that you can see through).
A trick I came up with for using the plastic cup system is putting a little bit of baby oil in the bottom of the bucket first, if the contents are especially thick. After you dump your contents, it won't stick to the bucket so when you dump it it just slides right out.
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