Ok, now I'm caught up in time. A couple days ago it was 8 weeks out from my surgery. Two weeks ago I had my second IV chemo session.
When I met with Dr. Witta before this second round of chemo I told him about those nasty painful back spasms. I had even called him during that time and he said if it continues after a couple days he'd put me on steroids. I'm glad it went away. But I asked him about the dosage of that Neulasta, did I have to have a full dose considering my white blood cell counts are always normal? He said I didn't have to, and we both agreed that the dose should be lessened. He said a full dose is 6 mg and that he'd give me only 2 this time. He said most people can't handle a full dose but that he wanted to see how I tolerated it. Wow, he doesn't fool around.
So for the IV poke this second time around I asked the IV nurses if I could have it in my left antecubital but they said it's too dangerous there and the farthest up my arm they could go was only mid forearm. I think it went well this time. I had much less pain than the first time in the wrist. But I still got pretty painful back spasms, just not nearly as intense as the first time. Still bone and muscle pain.
But this round also made me pretty ill in other ways. Three days after the chemo I woke up feeling very weak and dizzy. I didn't think to check my blood pressure but I'm wondering if it was low. I just had an overall unwell feeling. I managed to get a shower and do my hair although I started feeling more weak and dizzy. I checked my blood sugar and it was good. And then it was time to change my stoma's barrier and bag.
After I got started with it is when I knew I was pretty sick. Not nauseated and vomiting but just not doing well at all. But I had to finish, couldn't just leave my stoma bare on my belly. Each time I stood up to go back to the bathroom to finish, I got lightheaded and had to go sit back down. I started get one hell of a hot flash and this went on for an hour. I'm not kidding you. I've never had a hot flash last that long, and I think that's what really made me sick. At one point I was standing in the bathroom determined to try and finish my pouching system when I looked in the mirror and my face was pale green. I could feel myself losing consciousness.
I walked quickly toward my bedroom but before I could get through the door my vision went black but I was still conscious and knew I was facing my bed. Just had to take a few more steps and I'd be at my bed. I remember lying down but am not sure if I stayed conscious or not. I felt like I passed out. Next thing I knew I was feeling perfectly normal again. I was afraid to get up, what if I had another bout again?
Then I shot out of bed from what I knew was going to be a mess in the bed if I didn't make it to the toilet. I got to the toilet, sat down, and water came rushing out of me. Again, there's not supposed to be anything coming out that end! (Dr. Strobos said that my large intestine was closed off).
What was coming out of me wasn't what you would call mucus. It was the same consistency, color, and amount that diarrhea would be. It did have some little bits of formed feces but the rest was water, quite a bit of it. This is why I don't agree that it could still be leftover prep from before my surgery.
An hour or so later I had to go sit on the toilet again, and this time what came out looked like a normal formed stool. But it actually wasn't. It was white and semi-solid. I guess it's just mucus. I honestly don't know what to think.
Because I was feeling perfectly normal again I didn't call anyone, but a friend suggested I do mention it to my doctors. So this past Thursday on my day off work I called my radiation doctor's office. I wanted to know if the radiation was still in me, still affecting me, and perhaps had something to do with this water that keeps coming out of me. Consequently I still have vaginal water "discharge" sometimes. It comes and goes. They checked with Dr. Kemmis, and then came back on the phone to let me know he said there was no more radiation in me and I wouldn't be having side effects from it anymore. The vaginal discharge was because of my hormones still adjusting due to the medically-induced menopause. However, they suggested I contact Dr. Strobos' office to let them know about the dizziness, fainting, and rectal watery output.
They called them for me, and when I got a return call from the surgeon's office I kinda got lectured by the medical assistant for not having called 5 days earlier when this event took place. I told her, "I have so many symptoms going on that I have no idea which doctor to call." I figured the chemo was the main culprit, coupled by that hour-long major hot flash. Those hot flashes are horrible especially when they don't stop. I think the rectal "diarrhea" was a separate thing that just happened to come at the same time as all the other symptoms.
The medical assistant said that it was too late for them to figure out what was going on now that I had waited so long to tell them about it, but that next time something like this happens I need to call them or go to the ER. My main concern at the time was not fainting. But afterwards I was perfectly fine. There was no reason really to call anyone nor go to the ER at that point.
If I have another bout of this rectal diarrhea, I will definitely call the surgeon's office back. She said they might want to do a flexible sigmoidoscopy to have a look and maybe a sample. I don't think anything is necessarily wrong, I just think it's strange that I'm still having this much stuff come out that end. Last month when I called about the rectal output they told me it was possible and normal for some poeple and that it should stop soon. So according to that there's nothing to worry about. Honestly, I think the chemo made me feel weak and dizzy, and maybe I was a little dehydrated . Then with that horrible hot flash that wouldn't quite, that's what caused me to faint. I doubt anything is really wrong.
Wednesday, February 11, 2015
My stoma makes little noises sometimes. Gas. But the bags come with filters to release the gas but not the odor so the bag doesn't fill up with air all the time. The bags are odor proof and leak proof, and so far I have not had an explosion of contents. But I do, however, empty my bag many, many times a day. With an ileostomy you're putting out waste pretty regularly. Every time you eat, it's not long before something's coming out.
The only time I've had a mishap was once when I was wearing tight sweatpants and went to pull them down to go pee. The elastic waistband caught on the coupling holding the bag onto the skin barrier and pulled them apart the bag ripped off and I had little splatters of poo on my clothes, the bag, the floor.
Usually when I'm emptying the bag or changing the barrier there's no odor of the contents but it really depends on what I've been eating. I've been keeping a log of what I eat and what kind of output it produces.
Here are some details you might not want to know about: Egg salad comes out smelling like really smelly egg salad and you can see bits of eggs in your pouch. Sesame seeds come out whole, and so do the soft seeds inside cucumbers and grapefruit, and the beans inside green beans. Greasy food produces really greasy output. The fat from meat smells the worst and makes output yellow. Tomato sauce makes output black. Antibiotics make it green. Usually it's a normal brown color. Mine is normally a good thicker consistency, but if I eat too much then digestion is slower and my output is really watery for a while. "Boost" drinks come out nearly as fast as you can drink one and is very runny, but if you eat some cornflakes beforehand it will come out thicker. Spinach comes out as spinach and so do the green beans. I think these two things don't get digested at all. Same for pickles, onions, and green chilies. I've seen them all in my bag. I can't have popcorn I've avoided corn completely because it's a huge blockage risk. So are gummy bears apparently. I can't have salads. I'm not supposed to have raw fruits and vegetables or anything with a peel. Cabbage, even cooked, is bad and that means Brussels sprouts too. No grapes or raisins. Oh, and fish comes out smelling like fish. But boy those fish tacos we had at the mall one night sure were worth it.
And that reminds me. That was the night someone hit my car. We were sitting at a red light and Abby noticed the car in front of us was rolling backward. I hit the horn but he just rolled back into me. Didn't hit me incredibly hard of course but I was so pissed off. I'm glad he pulled his car over instead of leaving once the light changed, but my kids were already taking pictures of his car and plates with their cell phones. First I wished I had had the presence of mind to try and turn the car to the side but I didn't have time, and then Abby pointed out the obvious…that he just would have ended up hitting the side of the car instead and that would be worse. "That's what the bumper is for, Mom, to take the impact." She's so smart.
That's exactly what the appraiser said when I took my car in the other day. Very minor damage, only cosmetic, and she suggested I just take the check. $405! Not bad. I figured it didn't make sense to use the money for cosmetic repair of my bumper when I know my car has one stuck window, one stuck sliding door, and I need something called a brake fluid exchange or something like that. My car is like my teeth, only little fixes here and there. Can't afford to do everything at once, but by the time you get one thing fixed then something is in need of repair. Oh well.
The only time I've had a mishap was once when I was wearing tight sweatpants and went to pull them down to go pee. The elastic waistband caught on the coupling holding the bag onto the skin barrier and pulled them apart the bag ripped off and I had little splatters of poo on my clothes, the bag, the floor.
Usually when I'm emptying the bag or changing the barrier there's no odor of the contents but it really depends on what I've been eating. I've been keeping a log of what I eat and what kind of output it produces.
Here are some details you might not want to know about: Egg salad comes out smelling like really smelly egg salad and you can see bits of eggs in your pouch. Sesame seeds come out whole, and so do the soft seeds inside cucumbers and grapefruit, and the beans inside green beans. Greasy food produces really greasy output. The fat from meat smells the worst and makes output yellow. Tomato sauce makes output black. Antibiotics make it green. Usually it's a normal brown color. Mine is normally a good thicker consistency, but if I eat too much then digestion is slower and my output is really watery for a while. "Boost" drinks come out nearly as fast as you can drink one and is very runny, but if you eat some cornflakes beforehand it will come out thicker. Spinach comes out as spinach and so do the green beans. I think these two things don't get digested at all. Same for pickles, onions, and green chilies. I've seen them all in my bag. I can't have popcorn I've avoided corn completely because it's a huge blockage risk. So are gummy bears apparently. I can't have salads. I'm not supposed to have raw fruits and vegetables or anything with a peel. Cabbage, even cooked, is bad and that means Brussels sprouts too. No grapes or raisins. Oh, and fish comes out smelling like fish. But boy those fish tacos we had at the mall one night sure were worth it.
And that reminds me. That was the night someone hit my car. We were sitting at a red light and Abby noticed the car in front of us was rolling backward. I hit the horn but he just rolled back into me. Didn't hit me incredibly hard of course but I was so pissed off. I'm glad he pulled his car over instead of leaving once the light changed, but my kids were already taking pictures of his car and plates with their cell phones. First I wished I had had the presence of mind to try and turn the car to the side but I didn't have time, and then Abby pointed out the obvious…that he just would have ended up hitting the side of the car instead and that would be worse. "That's what the bumper is for, Mom, to take the impact." She's so smart.
That's exactly what the appraiser said when I took my car in the other day. Very minor damage, only cosmetic, and she suggested I just take the check. $405! Not bad. I figured it didn't make sense to use the money for cosmetic repair of my bumper when I know my car has one stuck window, one stuck sliding door, and I need something called a brake fluid exchange or something like that. My car is like my teeth, only little fixes here and there. Can't afford to do everything at once, but by the time you get one thing fixed then something is in need of repair. Oh well.
MY FIRST MONTH HOME FROM SURGERY
It was nice to be home for Christmas. I didn't even mind that I couldn't eat much because I just wasn't hungry. I only showered every other day for a few weeks because I was just too exhausted to do all that work. Besides, all I did was sit in my PJs all day and either sleep or watch television.
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.
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.
Sunday, February 8, 2015
8 WEEKS POST OP!
Today is Sunday, February 8, 2015. Tonight actually. It's late and I need to get to bed, but I've been putting off catching up on my blog long enough. I need to get this very long and very overdue entry added.
Tomorrow makes it 8 weeks since my surgery on December 15, 2014 for removal of my colon cancer and giving me a temporary ileostomy. I started back to work last week and it feels good to be back normal. My thoughts are still sluggish sometimes but that may be partially due to the heavy chemo too. My body still aches and I still have a lot of fatigue every day. But mentally and spiritually I'm feeling clearer, happier, and stronger every day. This journey so far has taken a lot out of me but I'm excited to be this far and feeling this great.
The only way to catch up on this blog is to just give a stream of consciousness telling of what I remember rather than trying to do a tidy day-by-day replay. I feel bad that I haven't felt like writing in so long but I was so weak, can't really blame myself. Here you go:
Monday, December 15, 2014
Went into the hospital at 5:30 am, surgery was at 7:30. About a six-hour surgery, successful according to the surgeon. I remember waking up briefly and being in and out of consciousness while being wheeled upstairs to a recovery room. The first thing I remember when fully waking is saying over and over, “It hurts so much, it hurts so much.” The pain was incredible, especially in my low back. My family has said I continued to say this over and over.
They also told me that the surgeon warned them prior to seeing me that my face was extremely swollen due to the position I was in during surgery and the fluid running to my head. My mom and my kids told me that when they first saw me I was unrecognizable. My daughter cried so much when she saw me. I remember that. I felt so bad for her at the time although I had no idea why she was crying. No one gave me a mirror or took my picture. I kind of wish they had.
Jumping ahead to the next night…the incredible pain in my low back, as I figured out on my own, was a blockage in my bladder catheter. I remember calling the nurse in to check the catheter. At first she said it was fine, then she discovered it was clogged and that urine had been backing up for a day and a half. She immediately fixed it and I had instant relief of the most intense pain I’d ever had in my life. Honestly I think my bladder could have burst if I hadn’t figured out that was the problem. That was Tuesday evening.
One of the first things I got to eat was a grape Popsicle. God it was good! Popsicles are my favorite.
This was the first time I was up from the bed and sitting in a chair. The pain was so great, and it was so much work to first sit on the edge of the bed, then to stand, then to sit in the chair. I got a major hot flash doing all that. In the middle of eating my Popsicle I got nauseated, tried to not to be sick, but threw up a little. Ick. There was a bucket. I still finished my Popsicle.
Looking at this picture, I now remember that my ostomy nurse had just walked in, my kids had just shown up, and one of the physical therapy folks came by. My mom was there and my nurse was there. This is what it was like a lot that week, everyone showing up at once. It was overwhelming for me.
NOTE: At this writing, weeks later, I now realize that the biggest change affecting me was my energy body being all out of whack. You know how intrusive and disruptive a major surgery is to your physical body and your emotions? Well imagine what your energy body goes through at a time like this. That's why now, 8 weeks post op I'm feeling pretty great. It's not just about the physical, it's about my energy, my spirit. The more I get back to my normal routine and normal self, the better I feel because I'm getting my spirit back.
By Wednesday morning my surgeon popped in to check on me. Said he had some good news and bad news. I wanted the bad news first. Out of the 16 lymph nodes he removed, 3 were positive for cancer. I felt devastated. I wanted there to be no lymph no involvement. That would have made me feel like I had a fighting chance at beating the cancer. Now with already lymph node involvement I felt like my safety net from stage 4 cancer was gone and I could have metastasis at any moment. I was very, very sad that day. I cried.
Dr. Strobos, my surgeon, said it definitely wasn’t the news he wanted but that he still felt confident he’d gotten all the cancer. He explained the dimensions and margins and that it looked so good, but it didn’t make much sense to me. I took comfort in his confidence though.
“I gotta ask you something. What happened to my vagina? It's so, big!" An odd question, I know, but it was like my vagina was inside out and dangling between my legs. "What the hell happened to me? I'm so swollen!" I was downright scared. "This isn't the narcotics talking, I'm being serious." He just looked at me for a moment, straight-faced. That scared me even more. This is a man I hardly know at all, so I couldn’t read him. And he wasn't saying anything.
Finally he said, “Wow, really? Your vagina? Gosh, usually it’s the guys who complain about being swollen after surgery. You should see it. I mean, their cojones are this big.” And he used his hands to demonstrate. “I’m gonna have to tell them, you think you’re swollen, you should see what happens to the women!”
Ok, so he had me. I finally got that he was pulling my leg. Oh God, it hurt to laugh and I was trying not to. I said, “Stop it, stop making me laugh, it hurts!” He cracked up and I said “Get out of here if you’re gonna make me laugh.” That was great. I’ll never forget his face. He acted so clueless!
Ok, back to seriousness…what happened was that during surgery they had me on a tilted table so that’s why my face was so swollen and unrecognizable because of all the fluid from the surgery. Then when they had me sitting in bed, guess what? All that fluid went south. My abdomen was enormously swollen, and I naturally expected that. But dang. My vulva was literally slapping me between my thighs when I walked. Not a pretty sight to see. And no I did not take a picture of that. I’m not exaggerating either. It was freakish and gross. NOTE: It took a good week and a half or so for all that fluid to get flushed out or absorbed. Remember, I like body parts to be in their rightful places, so it was no fun seeing myself naked. Glad too when my abdomen shrunk back to normal.
The days that week seemed like forever to me although they all rolled together. My consciousness during that week was moments being awake followed by short sleeping stints. The pain button releases your narcotics every 6 minutes. The problem is that you have to be awake to push it. It’s a quick relief and good sleepiness taking over, but it’s short. Then you wake up in pain again. It was impossible to get real sleep because the nurse is coming in to check vitals again. Or coming in to check my blood sugar. Or to give me insulin. Or to take me to the toilet. Or to help me get repositioned in the bed. Or it’s the surgeon. Or family members. Or the ostomy nurses. Or the respiratory therapy folks. Or the physical therapy folks. Or the dietitian. Or room service bringing me the meals that I still can’t eat yet. Or housekeeping asking if they can clean my room.
Long story short, hospitals are no place for rest. There were times when I had to literally request that no one enter my room for at least an hour or so just so that I could sleep. I had them stick a note on my door!
The pain was incredible that first week. I wasn’t able to move myself, so had to have two nurses at a time to move me. That’s why there’s an extra sheet under you, so they can each grab a side, and 1, 2, 3, they pull you up the bed. I had to tell them, teach them, “do it slowly”. I know it was a lot of work for them but the pain was indescribable. I must have apologized a million times that week for all my requests. But I’m a person who speaks up, speaks my mind. In return I was told many times that they appreciated my independence, because I was mentally alert enough to communicate clearly and do a lot for myself as I began feeling better.
Like manage my own insulin. That was frustrating, being told how much insulin they were going to give me, telling me I wasn’t allowed to be on my long-acting insulin yet because I wasn’t eating yet. I tell ya, that got me to eat. There’s nothing worse than not being able to do your own care. So I tried to eat. It wasn’t much but at least it got me back in control of my own insulin doses. Most of the time that week my blood sugars were in the high 200s and that felt like crap. Gave me headaches too. I was already suffering caffeine withdrawal. (But the good news is I kicked my caffeine addiction. Here I am typing this 6 weeks out, and it’s wonderful to not be addicted to caffeine anymore).
I had brought a back scratcher from home. One of those long wooden sticks with a curl of “fingers” on the end. I know how itchy I get from my body swelling from fluid and from narcotics, and I itched from head to toe nonstop that entire week. That back scratcher came in so handy for that. It also was good for helping pull things to me, like the box of Kleenex or whatever.
I remember they had a little personal fan on a side table near the bed. That came in handy every time one of my hot flashes hit me. I woke up several times a night with horrible hot flashes, me sweating so bad that the bed sheets had to be changed.
I remember having nosebleeds because of the heparin. Had to have that to prevent blood clots. But the nosebleeds resulted in clotted blood in my nose that would cause post-nasal drip during the night while I slept. I remember waking up in a coughing/choking fit a few times. And the kind of pain I was in, it was impossible to actually cough for real. The best I could do was try to roughly clear my throat. At one point I literally thought I might die from not being able to cough. Thought I’d just choke to death on my own bloody snot.
I finally figured out that if I hold my right side as hard as I could, I could then manage a weak cough, enough to clear my throat. My side hurt constantly. By Friday my surgeon came to take out the tube that drained bloody fluid from the surgery site. He yanked it out when I wasn’t ready. I hadn’t been holding my side, and it hurt like hell. I told him I needed to hold in my side, and when he realized what I meant he thought I might have a hernia. So he ordered a CAT scan for me. Not fun. It meant I had to drink all that fluid again. But the CT showed no hernia, so that was good.
Here's what family visiting you in the hospital looks like. (Geez, did they think I was sleeping?) I love this photo! I know a lot of the time I must have been pretty dopey so I don't blame them.
The right-side pain continued for weeks after I was released and as best as I or anyone can figure, it was just extremely swollen muscles. But to do anything, anything at all, I had to hold my hand tight over my right side just to move.
In the hospital my nurse had to help me to sit up, then to stand. It hurt like hell to sit up. The pain went across my abdomen like a sharp knife, but once I was standing it was ok. I had to use a walker while in the hospital. It took my breath away just to sit, stand, and walk.
Using the toilet was interesting. Once they got the bladder catheter out of me I had to ask for help each time I needed to go pee. Then I had to sit there on the toilet and try to remember how to pee! It was like, everything inside me was so swollen, so painful, and so numb all at the same time, and I couldn’t find the right muscles to squeeze to get my urine stream going. Then when I finally figured out what to squeeze, only a few drops came out. And I’d have to sit there and try again, and again.
My urethra continued to hurt constantly but I never had an infection. It was just extreme irritation from the bladder catheter, and bladder irritation from the surgery. They said the bladder, being so close to the surgery site, got very irritated and was a big source of my pain. (Not to mention it nearly bursting!)
Then Friday I had to have a bowel movement. And I mean an actual one, from my anus. That really had me confused. I thought my surgery meant I was closed up down there??? But I felt it, and it was gonna come out! I didn’t even bother buzzing in a nurse to help get me to the toilet. I got myself there!
I figured out how to find those muscles too. If I held my right hand tightly on my right side, and used the fingers of my left hand to push inward just below my belly button…and if I pushed and squeezed my abdominal muscles until I felt them pushing against my fingers, I realized I was squeezing my rectal muscles. And finally some stool came out. I told my surgeon exactly what was going on…in fact I said “how come I’m still able to poop? I have to have a bag on my stomach AND I have to still poop like normal?” He said it was probably just residual from my prep, like when I was getting cleaned out before the surgery, not all the prep had come out so this was leftover. I didn’t really buy that explanation, and since then I've had it several more times.
Saturday, December 20, 2015, I was discharged by surprise, five and a half days after my surgery Monday morning. By surprise I mean that my surgeon had mentioned me going home probably Sunday, and then without me knowing, my nurse had called him and said I was ready to be discharged now. I later found out she did that because I was "so independent".
I remember that for the last two days I didn't want to lie in bed anymore but just sit up in the big comfy chair. I was right next to the bathroom that way and I could just get myself up and go without waiting for help. I wasn't trying to be stubborn, it's just that's how suddenly there were times I needed to be on the toilet. Still prep water coming out? I still don't believe so.
When it started being Saturday afternoon around 2 pm or so and no one had come around to take me out into the hallway for a walk I was going to just get my walker and go out there. And then a cute man walked into my room (this is why I always kept the curtain pulled, no one knocks!) and he said he was from physical therapy. I asked if he would take me out walking, and he said that's exactly what he was there for. He wanted to make sure I could handle walking up and down stairs by myself, and I was able to just fine. We then walked around the hall a couple times, talking, and then back to my room.
Sitting in that big chair was a sundae and a note! I said, "What's this? Who did this?" I was so surprised. And he said, "This is our way of letting you know you're going home." That was pretty sweet. Everyone had planned all this behind my back, getting me out of the room and all. He left so I could get dressed and pack my things. I called my family to let them know to come pick me up! I had a few bites of the sundae but couldn't finish it so I let Abby have it when she got to the hospital. I was really excited to be going home. I think once I started becoming more independent and actually wanting to be up and moving around, it made all the difference.
Tomorrow makes it 8 weeks since my surgery on December 15, 2014 for removal of my colon cancer and giving me a temporary ileostomy. I started back to work last week and it feels good to be back normal. My thoughts are still sluggish sometimes but that may be partially due to the heavy chemo too. My body still aches and I still have a lot of fatigue every day. But mentally and spiritually I'm feeling clearer, happier, and stronger every day. This journey so far has taken a lot out of me but I'm excited to be this far and feeling this great.
The only way to catch up on this blog is to just give a stream of consciousness telling of what I remember rather than trying to do a tidy day-by-day replay. I feel bad that I haven't felt like writing in so long but I was so weak, can't really blame myself. Here you go:
Monday, December 15, 2014
Went into the hospital at 5:30 am, surgery was at 7:30. About a six-hour surgery, successful according to the surgeon. I remember waking up briefly and being in and out of consciousness while being wheeled upstairs to a recovery room. The first thing I remember when fully waking is saying over and over, “It hurts so much, it hurts so much.” The pain was incredible, especially in my low back. My family has said I continued to say this over and over.
They also told me that the surgeon warned them prior to seeing me that my face was extremely swollen due to the position I was in during surgery and the fluid running to my head. My mom and my kids told me that when they first saw me I was unrecognizable. My daughter cried so much when she saw me. I remember that. I felt so bad for her at the time although I had no idea why she was crying. No one gave me a mirror or took my picture. I kind of wish they had.
Jumping ahead to the next night…the incredible pain in my low back, as I figured out on my own, was a blockage in my bladder catheter. I remember calling the nurse in to check the catheter. At first she said it was fine, then she discovered it was clogged and that urine had been backing up for a day and a half. She immediately fixed it and I had instant relief of the most intense pain I’d ever had in my life. Honestly I think my bladder could have burst if I hadn’t figured out that was the problem. That was Tuesday evening.
One of the first things I got to eat was a grape Popsicle. God it was good! Popsicles are my favorite.
This was the first time I was up from the bed and sitting in a chair. The pain was so great, and it was so much work to first sit on the edge of the bed, then to stand, then to sit in the chair. I got a major hot flash doing all that. In the middle of eating my Popsicle I got nauseated, tried to not to be sick, but threw up a little. Ick. There was a bucket. I still finished my Popsicle.
Looking at this picture, I now remember that my ostomy nurse had just walked in, my kids had just shown up, and one of the physical therapy folks came by. My mom was there and my nurse was there. This is what it was like a lot that week, everyone showing up at once. It was overwhelming for me.
NOTE: At this writing, weeks later, I now realize that the biggest change affecting me was my energy body being all out of whack. You know how intrusive and disruptive a major surgery is to your physical body and your emotions? Well imagine what your energy body goes through at a time like this. That's why now, 8 weeks post op I'm feeling pretty great. It's not just about the physical, it's about my energy, my spirit. The more I get back to my normal routine and normal self, the better I feel because I'm getting my spirit back.
By Wednesday morning my surgeon popped in to check on me. Said he had some good news and bad news. I wanted the bad news first. Out of the 16 lymph nodes he removed, 3 were positive for cancer. I felt devastated. I wanted there to be no lymph no involvement. That would have made me feel like I had a fighting chance at beating the cancer. Now with already lymph node involvement I felt like my safety net from stage 4 cancer was gone and I could have metastasis at any moment. I was very, very sad that day. I cried.
Dr. Strobos, my surgeon, said it definitely wasn’t the news he wanted but that he still felt confident he’d gotten all the cancer. He explained the dimensions and margins and that it looked so good, but it didn’t make much sense to me. I took comfort in his confidence though.
“I gotta ask you something. What happened to my vagina? It's so, big!" An odd question, I know, but it was like my vagina was inside out and dangling between my legs. "What the hell happened to me? I'm so swollen!" I was downright scared. "This isn't the narcotics talking, I'm being serious." He just looked at me for a moment, straight-faced. That scared me even more. This is a man I hardly know at all, so I couldn’t read him. And he wasn't saying anything.
Finally he said, “Wow, really? Your vagina? Gosh, usually it’s the guys who complain about being swollen after surgery. You should see it. I mean, their cojones are this big.” And he used his hands to demonstrate. “I’m gonna have to tell them, you think you’re swollen, you should see what happens to the women!”
Ok, so he had me. I finally got that he was pulling my leg. Oh God, it hurt to laugh and I was trying not to. I said, “Stop it, stop making me laugh, it hurts!” He cracked up and I said “Get out of here if you’re gonna make me laugh.” That was great. I’ll never forget his face. He acted so clueless!
Ok, back to seriousness…what happened was that during surgery they had me on a tilted table so that’s why my face was so swollen and unrecognizable because of all the fluid from the surgery. Then when they had me sitting in bed, guess what? All that fluid went south. My abdomen was enormously swollen, and I naturally expected that. But dang. My vulva was literally slapping me between my thighs when I walked. Not a pretty sight to see. And no I did not take a picture of that. I’m not exaggerating either. It was freakish and gross. NOTE: It took a good week and a half or so for all that fluid to get flushed out or absorbed. Remember, I like body parts to be in their rightful places, so it was no fun seeing myself naked. Glad too when my abdomen shrunk back to normal.
The days that week seemed like forever to me although they all rolled together. My consciousness during that week was moments being awake followed by short sleeping stints. The pain button releases your narcotics every 6 minutes. The problem is that you have to be awake to push it. It’s a quick relief and good sleepiness taking over, but it’s short. Then you wake up in pain again. It was impossible to get real sleep because the nurse is coming in to check vitals again. Or coming in to check my blood sugar. Or to give me insulin. Or to take me to the toilet. Or to help me get repositioned in the bed. Or it’s the surgeon. Or family members. Or the ostomy nurses. Or the respiratory therapy folks. Or the physical therapy folks. Or the dietitian. Or room service bringing me the meals that I still can’t eat yet. Or housekeeping asking if they can clean my room.
Long story short, hospitals are no place for rest. There were times when I had to literally request that no one enter my room for at least an hour or so just so that I could sleep. I had them stick a note on my door!
The pain was incredible that first week. I wasn’t able to move myself, so had to have two nurses at a time to move me. That’s why there’s an extra sheet under you, so they can each grab a side, and 1, 2, 3, they pull you up the bed. I had to tell them, teach them, “do it slowly”. I know it was a lot of work for them but the pain was indescribable. I must have apologized a million times that week for all my requests. But I’m a person who speaks up, speaks my mind. In return I was told many times that they appreciated my independence, because I was mentally alert enough to communicate clearly and do a lot for myself as I began feeling better.
Like manage my own insulin. That was frustrating, being told how much insulin they were going to give me, telling me I wasn’t allowed to be on my long-acting insulin yet because I wasn’t eating yet. I tell ya, that got me to eat. There’s nothing worse than not being able to do your own care. So I tried to eat. It wasn’t much but at least it got me back in control of my own insulin doses. Most of the time that week my blood sugars were in the high 200s and that felt like crap. Gave me headaches too. I was already suffering caffeine withdrawal. (But the good news is I kicked my caffeine addiction. Here I am typing this 6 weeks out, and it’s wonderful to not be addicted to caffeine anymore).
I had brought a back scratcher from home. One of those long wooden sticks with a curl of “fingers” on the end. I know how itchy I get from my body swelling from fluid and from narcotics, and I itched from head to toe nonstop that entire week. That back scratcher came in so handy for that. It also was good for helping pull things to me, like the box of Kleenex or whatever.
I remember they had a little personal fan on a side table near the bed. That came in handy every time one of my hot flashes hit me. I woke up several times a night with horrible hot flashes, me sweating so bad that the bed sheets had to be changed.
I remember having nosebleeds because of the heparin. Had to have that to prevent blood clots. But the nosebleeds resulted in clotted blood in my nose that would cause post-nasal drip during the night while I slept. I remember waking up in a coughing/choking fit a few times. And the kind of pain I was in, it was impossible to actually cough for real. The best I could do was try to roughly clear my throat. At one point I literally thought I might die from not being able to cough. Thought I’d just choke to death on my own bloody snot.
I finally figured out that if I hold my right side as hard as I could, I could then manage a weak cough, enough to clear my throat. My side hurt constantly. By Friday my surgeon came to take out the tube that drained bloody fluid from the surgery site. He yanked it out when I wasn’t ready. I hadn’t been holding my side, and it hurt like hell. I told him I needed to hold in my side, and when he realized what I meant he thought I might have a hernia. So he ordered a CAT scan for me. Not fun. It meant I had to drink all that fluid again. But the CT showed no hernia, so that was good.
Here's what family visiting you in the hospital looks like. (Geez, did they think I was sleeping?) I love this photo! I know a lot of the time I must have been pretty dopey so I don't blame them.
The right-side pain continued for weeks after I was released and as best as I or anyone can figure, it was just extremely swollen muscles. But to do anything, anything at all, I had to hold my hand tight over my right side just to move.
In the hospital my nurse had to help me to sit up, then to stand. It hurt like hell to sit up. The pain went across my abdomen like a sharp knife, but once I was standing it was ok. I had to use a walker while in the hospital. It took my breath away just to sit, stand, and walk.
Using the toilet was interesting. Once they got the bladder catheter out of me I had to ask for help each time I needed to go pee. Then I had to sit there on the toilet and try to remember how to pee! It was like, everything inside me was so swollen, so painful, and so numb all at the same time, and I couldn’t find the right muscles to squeeze to get my urine stream going. Then when I finally figured out what to squeeze, only a few drops came out. And I’d have to sit there and try again, and again.
My urethra continued to hurt constantly but I never had an infection. It was just extreme irritation from the bladder catheter, and bladder irritation from the surgery. They said the bladder, being so close to the surgery site, got very irritated and was a big source of my pain. (Not to mention it nearly bursting!)
Then Friday I had to have a bowel movement. And I mean an actual one, from my anus. That really had me confused. I thought my surgery meant I was closed up down there??? But I felt it, and it was gonna come out! I didn’t even bother buzzing in a nurse to help get me to the toilet. I got myself there!
I figured out how to find those muscles too. If I held my right hand tightly on my right side, and used the fingers of my left hand to push inward just below my belly button…and if I pushed and squeezed my abdominal muscles until I felt them pushing against my fingers, I realized I was squeezing my rectal muscles. And finally some stool came out. I told my surgeon exactly what was going on…in fact I said “how come I’m still able to poop? I have to have a bag on my stomach AND I have to still poop like normal?” He said it was probably just residual from my prep, like when I was getting cleaned out before the surgery, not all the prep had come out so this was leftover. I didn’t really buy that explanation, and since then I've had it several more times.
Saturday, December 20, 2015, I was discharged by surprise, five and a half days after my surgery Monday morning. By surprise I mean that my surgeon had mentioned me going home probably Sunday, and then without me knowing, my nurse had called him and said I was ready to be discharged now. I later found out she did that because I was "so independent".
I remember that for the last two days I didn't want to lie in bed anymore but just sit up in the big comfy chair. I was right next to the bathroom that way and I could just get myself up and go without waiting for help. I wasn't trying to be stubborn, it's just that's how suddenly there were times I needed to be on the toilet. Still prep water coming out? I still don't believe so.
When it started being Saturday afternoon around 2 pm or so and no one had come around to take me out into the hallway for a walk I was going to just get my walker and go out there. And then a cute man walked into my room (this is why I always kept the curtain pulled, no one knocks!) and he said he was from physical therapy. I asked if he would take me out walking, and he said that's exactly what he was there for. He wanted to make sure I could handle walking up and down stairs by myself, and I was able to just fine. We then walked around the hall a couple times, talking, and then back to my room.
Sitting in that big chair was a sundae and a note! I said, "What's this? Who did this?" I was so surprised. And he said, "This is our way of letting you know you're going home." That was pretty sweet. Everyone had planned all this behind my back, getting me out of the room and all. He left so I could get dressed and pack my things. I called my family to let them know to come pick me up! I had a few bites of the sundae but couldn't finish it so I let Abby have it when she got to the hospital. I was really excited to be going home. I think once I started becoming more independent and actually wanting to be up and moving around, it made all the difference.
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