2nd DAY OF RADIATION

Today is Friday, September 26, 2014.  I tried to get a lot of stuff packed today for the move.  It’s slow going but I think I will be able to pull it off in time.  But between work and all these appointments, there’s just not enough hours in a day to get everything I need accomplished.  I finally took a break to take a shower and then get ready for my radiation appointment.  I got there on time again and sat down to enjoy the puzzle but they called me back right away.  I met one of my other nurses today.  I think there are 4 in all.  As she walked me into the radiation room she said, "I'll be seeing more of you than you will of me, if you know what I mean."  Ha ha, very funny.  I'm glad everyone there is so warm and fun!

Today was a little more difficult than yesterday.  They had a little trouble getting me in the exact position.  After a few minutes they came back in to readjust me because I was off the tattoo marks a little.  I said that I was trying to be really still and they said I was, that it wasn’t me.  They just didn’t have me positioned precisely enough.  They left again and I heard the machine start doing its thing.  Then they came back in to reposition me again.  By now having laid on that hard table as still as possible for the past 10 minutes I was getting really, really uncomfortable.  I could feel my shoulder muscles starting to quiver and I was afraid I’d mess things up.  And the face holder thing (which is also very hard) was jabbing me in the throat.  My right ear was throbbing in pain.  But I was as still as I could be, just to get it over with.

I imagined the radiation zapping my cancer cells, killing them on contact.  Letting my mind drift like that helped take my mind off of trying to hold still.  Finally they were done.  The whole process today took about 20 minutes.  I let them know how uncomfortable I was and they said that on Monday they would work on making sure I was as comfortable as I could be before starting.  Maybe they could move the face rest a little differently they said.  They could see how red my throat was from it.

Before I left another nurse let me know that they had set up my ultrasound for Monday morning at 10:45.  One of the other nurses said maybe they could move my radiation dose that day so that I wouldn’t be making two trips in, and I let her know that I work in the building next door and that I just planned on going back to work in between appointments.

Now back to packing.  It’s been a lot of mental frustration and physical exhaustion but at least having something to do has taken my mind off of sitting around and worrying.  I’d rather be busy, especially now while I’m still feeling physically pretty well.  I had a couple days of feeling great, with my appetite finally coming back, so I made the mistake of eating more than usual.  I regretted it all last night and today, having more pain come back because of it.  I’ll have to go back to eating very lightly again.

FIRST RADIATION DOSE!

Today is Thursday September 25, 2014.  This morning I had an appointment with the surgeon who would be doing my surgery.  Mom wanted to go with me so I picked her up and then we headed to Golden.  He went over everything and it was all pretty much the same as what I’d already heard.  He explained that I’d need a temporary bag between anywhere from a few weeks to 6 months, but that he was certain he’d be able to reverse it and reattach my colon to my rectum when the time came.  He said, “I think your tumor is high enough that I can do that, but I just want to check and make sure that I know exactly where it is.”  I thought he would be looking at my previous scans or something but then he said, “So do you mind if I take a look with the sigmoidoscope?”

A surprise sigmoidoscopy is worse than a pop quiz.  But I’m always a good patient, so I didn’t mind.  I had to go into another room where they had a short table with a knee rest, and a large TV monitor next to it, with a long black tube hanging beside it.  The nurse showed me how to position myself on the table after I have my pants and undies off.  Then she got the doc.  While the two of them were getting ready to insert the camera I said, “Be careful of my hemorrhoids back there,” and the doctor said, “Oh don’t worry, I see them, I’ll be careful.”  It didn’t hurt but was just a little weird.  Then it got uncomfortable when he blew air into my colon.  I watched the monitor to see what my tumor looked like, but it wasn’t really easy to make heads or tails out of anything.  As long as the doctor knows what he’s seeing that’s all that matters.  He said he saw what he needed and that everything looked good for his plans for surgery. Before we left he gave me his cell phone number and told me to text him any time with any questions I might have.

After that I drove Mom home and then went home to wash up for my radiation appointment.  I wasn’t messy, and in fact I could tell on the monitor how clean my colon still was.  But they used gel to make insertion easier and even though I had wiped up in the office and even used the bathroom afterwards, I still felt like washing up.  Then I had to hurry to the hospital, Lutheran Medical Center, for my first radiation dose. I made it on time but they were running late, so I sat and did the jigsaw puzzle in the patient waiting room.  Someone had started the puzzle from the middle pieces, leaving big islands of puzzle done with hardly any of the edges started.  That drives me nuts.  So I got a good portion of the edge completed before it was my turn to be called in.

There wasn’t anything special about the radiation dose.  I can’t really see much except out of the corner of my eyes.  The machine has arms on the side that come out around me, and as I lay there I can hear it reposition itself around me, turning and whirring.  My tush again was exposed and I could feel a breeze in the room.  I think the only thing I felt from the radiation dose was a light warmth on my tush.  During one of the machine’s repositioning it bumped into my left elbow, and afterwards I let the nurse know.  She said they could move it a little for me next time.  Weight 137.9. 

IT'S MY BIRTHDAY!

Today is September 24, 2014, my 44th birthday.  I called the Radiation Oncology department yesterday an hour before closing since they hadn’t called me.  One of my nurses/techs said she was very busy but was going to call me, and that she wanted me to come in tomorrow (today) to finish up the treatment planning with x-rays and tattoos.  I had no idea there was still more to be done, but she said I would have my first radiation dose on Thursday, so I was happy to hear that.

At work today for my birthday Judy, my supervisor, had brought a snack tray for the office and a gift for me.  That was sweet.  It wasn’t just because I have cancer.  I always get that kind of treatment on my birthday at work.  I called Mom to check in with her and after we chatted a few minutes and she still hadn’t told me “happy birthday” I mentioned that my supervisor had given me some pretty body butter and shower gel for my birthday.  While Mom was silent on the other end for a few moments, I heard Judy saying, “Well that wasn’t subtle or anything.”  Then Mom said, “Oh my God I forgot it’s your birthday!”

Things have been very crazy for all of us the past few weeks, with my brother and sister-in-law visiting from Virginia, and then us finding out I have cancer, and then last week deciding to move me and the kids into Mom’s house….so I don’t blame her for forgetting to tell me happy birthday.  I just wanted to tease her.

After that I called my son David who had the day off school and work.  We chatted a few minutes and when he didn’t say “happy birthday” either I said, “You know it’s my birthday.  I can’t believe you didn’t say anything yet.  I think you should have to sing to me now.”  And then I put him on speaker!  David obediently started singing, then said he couldn’t remember the words, and then started making stuff up, and ended with “You don’t smell like a monkey!” to the tune of happy birthday.  Judy was cracking up.

I left work early for my appointment.  The radiation oncology department happens to be behind the building I work in, so that’s nice.  When they walked me into the radiation room I was told that each day I need to look at the monitor hanging from the ceiling and make sure that it’s my name that’s up there.  Since it’s my birthday I teased the nurses by asking if they noticed anything up there.  One of them looked puzzled as if something was wrong, and then she said, “It’s your birthday!”  I told them that I’m not shy about letting people know it’s my birthday!  They were sweet and told me happy birthday.  I love how kind and friendly everybody is there.  And they don’t mind me asking questions about everything either.  

The room with the radiation machine is a very large room, dimly lit, with a huge contraption in the middle.  It would kind of look like an MRI machine except it doesn’t have the tunnel.  I had to lie on a really hard table face down while two nurses positioned me into place with my pants and undies pulled down so that my whole tush is exposed.  First they took some x-rays, then came back in to give me the tattoos.  I didn’t realize they meant a real tattoo with a real needle.  It really hurt but only for a second.  I got three of those.  One on each hip and one over my natal cleft.  They tried to clean off the blue Xs from before, and told me they would eventually wash off.

Then one of the nurses said she was going to take pictures now, and I thought, didn’t they already take the x-rays?  Then I saw flashes and realized she meant actual pictures!  I guess those are photos for my file.  Photos of my rump!  And that was it.  It wasn’t an actual radiation treatment but the real treatments would be pretty much the same, without the photos.  They use the tattoos to make sure I’m in the proper location each time I come in, and they just look like a tiny freckle.

I got to visit with the radiation oncologist after my appointment and he said he’d be meeting with me each Wednesday.  He explained that I’d be getting 28 doses of radiation in total.

I asked him about something I saw on one of my CT scans where it was mentioned I might have a possible filling defect in my left common femoral vein, but he said he wasn’t too concerned about it.  He said, “I mean, you’re not having pain or coldness are you?”  And I said, “Well yeah, as a matter of fact I am.  That’s why I’m concerned.  For the past few months I’ve noticed a lot of pain in my left leg, and while sitting at work my left foot gets extremely cold.  I have to put a heating pad on it to warm it up.  And there’s a place on my leg just above my ankle where it hurts in the same place, like my skin is being irritated from the inside.”  I told him it was on my list of weird pains and issues I’ve noticed lately, but that after the diagnosis of cancer it all went out the window and I didn’t think more about it.  He said it was up to me if I wanted an ultrasound for it, and I said that I did.  I don’t want to ignore anything else that might be wrong with me!  I told him, if it’s nothing then good.  And he agreed.  He did say that the cancer and treatment do pose a risk for blood clots, so he said he would set me up for an ultrasound.

Monday September 22, 2014

So today is officially 12 days since my diagnosis of cancer.  Stage IIB colorectal cancer, T3, N0, M0.  I'm excited to start the chemo and radiation.  I'm a little nervous about side effects.  My oncologist said I shouldn't lose my hair.  That's good.  But I'm nervous of getting nausea or headaches.

The kids and I started packing the house.  A lot of friends, and friends of friends, have volunteered to help us move.  We've planned it for the weekend of Oct 11th.  I have no idea how I will be feeling, so I'm just trying to get everything packed and planned out as quickly as possible.

The pain still comes each day, heaviest in the evening or if I sit too long.  Since I'm guilty of over-sharing anyway, let me describe it.  The kidney-area pain hasn't been as bad.  I'm wondering if I had a little infection or stone that passed on its own or if the pain is from the hydronephrosis.  I still get sharp pain in the area of the top of my butt crack (the medical word is "natal cleft" by the way) going into my body.  And I'd say the most pain is a sharp pain right at my anus going up into me.  It really hurts to sit normally, so usually I have to lean to the side when I sit.  It also hurts to lay down on my sides for too long so I sleep a lot on my back, but that hurts too.  I kind of raise one leg up and lean a little to one side when I lay on my back.  That helps a little.  I have cramps all the time.

I still have thick bloody pus come out once in a while--not that it leaks out or anything.  Just when I use the toilet and feel like I need to have a bowel movement.  I've been feeling constipated too, and although I get urges to have a bowel movement it's usually only blood that comes out.  I really think I'm a little dehydrated so I'm trying to drink a lot of water.  I am dizzy a lot.  I don't really have an appetite and haven't been eating as much as I'm used to.  I get nauseated if I eat much.  Back before the appendectomy I weighed at most 154 I think. (My weight goes up and down a few pounds easily).  I loved to eat, would over eat, snacked a lot. But I just can't do that anymore.  Nowadays I have to make myself eat a little something at least just to keep my blood sugar from getting low.

My mom has been with me to all of my appointments.  I'm so grateful to have that kind of support.  It also helps to have someone there to ask questions or to help listen so I can remember everything that was discussed.  All the docs on my team have been great, going out of their way to see me quickly and that's been a load off my mind.  I can't stand to sit around not knowing or not doing something about this cancer.  Here's what I've been through so far.

Wednesday September 10--Had the colonoscopy which found the malignant tumor.

Thursday September 11--Had the endoscopic ultrasound for another biopsy and to stage the cancer.  T3, N0, M0.  I thanked the specialist who had been called to do this procedure, who had volunteered to go out of his way to see me this quickly.  And he said, "Hey, you're family.  You come first.  We take care of each other here."  I guess word got around that I work in the hospital.  He was really confident of his diagnosis and I felt a lot of relief listening to him explain his positive expectations for my treatment.

Friday September 12--Had the consultation with an oncologist who explained that my cancer is technically Stage IIB because it's growing through the layers of the colon wall but has not reached any lymph nodes or outer layers or structures yet.  He was confident that this was not only completely treatable but also curable.  He said that I'd be taking a chemo pill called Xeloda seven days a week while receiving radiation five days a week, for nearly two months, then have about 6 weeks off, then have surgery.  We discussed insurance and where I'd have my treatment.  This doc was great...he made all the phone calls and arrangements for me.  And he gave me a sample bottle of Xeloda.  In the meantime, he said, he would be working with my insurance to figure out where to call in the rest of the prescription I'd need.  He also gave me a prescription for Vicodin for pain.  Weight 144

Sunday September 14 -- I worried all weekend because of the pain.  The Vicodin helped the pain but I didn't want to just mask it and not think about it.  The pain made me worry it meant the cancer was spreading.  I was so upset that my son suggested I call the oncologist.  It was 7:43 pm on Sunday night.  I had to leave a message.  At 8:03 he called me back.  I told him about the pain, which he said sounded like it was my left kidney and said he didn't think I needed to go to the ER.  He said he'd look at it tomorrow.

Monday September 15--I had to go to the hospital to get a CT with contrast of the chest, abdomen, and pelvis to see if there was any detection of cancer anywhere else.  (My oncologist tried to get my insurance to approve a PET CT scan but it was denied, so for now this one would have to do).  I had to drink barium which I just assumed was something thick and gross, but instead was like super-sweetened fruit-flavored water.  I was handed two 16-oz bottles of it and told to try and drink as much of it as I possibly could.  It wasn't bad, just isn't the kind of thing you would choose to drink.  After I downed the first bottle I said to Mom, "Now, in a perfect world they would have handed me a platter of bacon and asked me to try and eat as much of it as I possibly could."  She laughed.  I managed to finish off the second bottle.

After the scan Mom and I visited the office I work in to see my co-workers.  I knew everyone was concerned for me.  I'm happy that all these procedures and my treatment will be done at the hospital where I work.

After that I went back to see my oncologist for the results, and he said everything looked good.  He said there were no kidney stones.  That was a relief.  But he said I had some mild nephrosis in both kidneys, which is urine collecting in the middle of the kidney.  He had me give a blood and urine sample to check my CBC and see if I had a kidney infection.  I asked why I'm still having so much pain and why it suddenly started toward the end of August.  He said that it was probably the pain of the tumor growing through the colon wall.  And that it would likely get worse.

After that appointment Mom and I went to lunch, then later to a consultation with a surgeon.  She was the same doc who said I needed the colonoscopy.  She was honest and said that she would have her colleague do the surgery because he specializes in this type of cancer surgery.  Whereas she could certainly do the surgery but she would have to leave me with a permanent colostomy bag, he was skilled enough to do this tricky surgery being able to reattach my colon.  My tumor was in a good location for that, only leaving me with a temporary bag until the colon could heal and be reattached later.  Whew.  Another load off my mind.  She also explained my option of having a chemo port placement or not and I opted not to.

Tuesday September 16 -- Finally have an appointment with the radiation oncologist.  I say finally, but I understand this is all moving very quickly.  Like I said, I am immensely grateful for that, although psychologically none of this is moving fast enough to satisfy my mind.  This doc went over everything again and explained about the radiation treatments, how and why it would take a few days for him to get everything in order before I could actually begin radiation.  First he'd need a treatment-planning CT so they could pinpoint the exact areas I'd need the radiation, and then figure out the dosage.  He had a team including a physicist, and he'd also have to confer with the oncologist and surgeon--everyone being on the same page--before I could begin.  He wanted a PET CT too, but since I'd already been turned down he said it could be done a little bit later and that would be fine. Weight 140.8

Wednesday September 17 -- The hospital called to schedule me for my treatment-planning CT for Friday!  Today makes one week since my diagnosis.

Thursday September 18-- I called my landlord.  A few days ago I told him about my diagnosis of cancer.  Now I was calling him to see if I could get out of my lease.  I love the little house I'd been renting for the past 6 years, but the medical bills are already piling up and will be much worse and financially I knew I won't be able to make it.  I also knew that since surgery was coming up in a few months that I needed to have my mom's help.  My landlord was great about it, completely understood and thought it was what's best for me.  So, the kids and I will be moving out in October and moving in with my mom.

Friday September 19 -- This afternoon I went in for the treatment-planning CT.  Mom again was with me.  We got to talk with the radiation oncologist again who was very reassuring that they were not unnecessarily making me wait, that all this treatment planning was very important.  The doc said I'd have to give a urine sample to make sure I wasn't pregnant.  I assured him there was no way I could be but he said he had to do one anyway.  So I joked, "If you find out that I am pregnant, that'll be more of a shock than finding out I have cancer!"  Before the nurse came in to start my IV insertion I asked the doctor when he thought I could start the radiation and he said it looks like it'll be next Wednesday.  "That's my birthday," I said.  "I hope you will at least sing to me that day."  He laughed and said he would and that he'd tell everybody and they'd all sing."

The nurse had trouble getting the needle in me, so I think I'm really dehydrated because I never have trouble with my veins.  I've always been told I have great veins!  She tried my left wrist, then my right.  She finally just sent me to CT to let them do it.

In the CT room one of the techs got the IV into my left arm.  They had me lay face down on a table which had a board across my shoulders and collar bone, and one across my pelvic area.  I had to lay like that about 20 minutes or so.  Had to have my pants and undies pulled down so they could mark X's on me.  One on either hip and one at the top of my butt crack.  (My kids say that I over-share.  I just like details).  They got me in the CT scanner and then started the IV contrast which makes you feel hot all over and feels like you're peeing yourself.  And that was that.  Now I can't wait to actually get started!

When I got home I called the oncologist's office since I hadn't heard from them about my labs.  I said to the receptionist, "Since I haven't heard from you is no news good news?"  She said "Yes, usually."  She looked it up and told me that my UA was negative, no infection.  I was supposed to see the oncologist again on Monday so I asked if that was necessary, so she put him on the phone.  (Wow, I can't believe how easily I'm getting this kind of fast service!)  He said that since I got the treatment-planning CT done and they are working on the rest of it and thinking of starting on Wednesday that I didn't have to come see him on Monday.  I could make an appointment for 10 days after treatment to see how I'm doing.  And he explained that I'd be taking 4 of the Xeloda a day.  Two pills twice a day.  I repeated what he said just to make sure.  "So like two pills in the morning and two in the afternoon?"  And he said yes.  I didn't realize I'd be taking that much.  That's ok with me, I just hope I don't have any nasty side effects.  Weight 138.6

STAGING

Coming home from the hospital after finding out I have cancer was devastating.  I felt so sorry to myself because I hadn't gotten myself looked at months ago.  And sorry to my kids and my family because I felt like I had let everybody down.  But I had to keep my head on straight.  Had to start making phone calls, to an oncologist, to a surgeon, to my insurance company, to my supervisor, to family and friends.  I had to get things moving, had to take charge of this thing.  I had no idea my son was sitting at his desk crying while listening to me on the phone.  I thought he was just focused on his homework  My daughter cried openly the rest of that first day right up until bedtime.

I hadn't eaten much in the days leading up to the colonoscopy because of the amount of pain I was in.  Eating just made it worse.  By now I was so hungry I didn't care about pain, I just wanted to eat.  I decided to make a big pot of my chicken noodle soup because I thought it would be easy on my system and it just sounded good because some cooler weather was coming.  Later that afternoon I got a call from the office of the gastroenterologist who did my colonoscopy.  The woman said, "Have you eaten anything yet?"  I said, "No but I'm getting ready to."  And she said, "Don't eat.  We can get you in for an ultrasound tomorrow but you can't eat.  And you'll have to do one Fleet enema before you come in."

I remember the tears coming again at the thought of being told I couldn't eat still, the one little comfort I was so looking forward to.  This was my 2nd full day of nothing but fluids and I felt miserable.  If you know me at all you know I love to eat.  I was so hungry and weak.  I think my electrolytes were off balance or something because my muscles and joints were in pain and I was shaky.  But I stayed on the liquid diet and I did the Fleet enema, and let me just say that it's really not easy to do one of those yourself.  Fortunately I was already completely empty with a squeaky clean colon to begin with...but if I hadn't been it would have been messy.

So now it's 1:30 on my third day of a liquid diet and I was going in for this ultrasound.  I was surprised when I got there to find out it wasn't just a regular ultrasound, it was an endoscopic ultrasound and they would be giving me propofol again.  One moment I felt myself falling asleep and the next I was waking up.

They staged it as T3, N0, M0 which meant the tumor size was a 3, but no nodes were involved and no metastasis.  I remember feeling relief just knowing there were no nodes involved yet which in my mind meant I had a good chance of fighting it.

Waking up this 2nd day from the propofol left me so groggy, wobbly, and slurring my speech.  I wasn't able to come out of it fully until later that evening.  (I was so weak my brother had to help me walk to the car, and later at home my son told me not to take the stairs by myself).  My mom, my brother, and me went to pick up my son from college, then they took me home.  I remember getting into my pajamas, heating up a bowl of my homemade chicken noodle soup, and sitting down for that first bite of food in three days.  It was Heaven.

FINDING OUT I HAVE COLORECTAL CANCER

On September 10, 2014 I was diagnosed with colorectal cancer.  I'm coping surprisingly well but I'm still in shock.  It's not that I now identify myself as a cancer patient as if my whole identity has become that, but let's face it, I'm a cancer patient.  Just to think it is shocking enough, but when I hear myself saying it out loud I feel like I'm lying or playing a joke because it just doesn't seem real.  I have always had to balance being too optimistic or too pessimistic when it comes to serious matters.  Neither is good.  So now that I'm dealing with one of my most dreaded fears having come into being, my mindset right now is keeping that balance in check by being realistic and focusing on what needs to be done.  So if you see me burst into tears while doing everyday normal things, it's the shock and disbelief hitting me again.

Looking back I can now see all the symptoms I've been experiencing the past year as being due to the cancer.  I started having rectal bleeding around the spring of 2013, just a few drops on the toilet paper, bright red blood.  I assumed it was hemorrhoids, which I knew that I had, so I wasn't worried. After having an appendectomy in July 2013, I attributed all my new symptoms to recovering from that surgery since I'm a type 1 diabetic and it takes me a lot longer than normal to heal.  Even a mosquito bite takes months to heal, so I wasn't too surprised that my digestive and bowel habits had changed, seemed to slow down.  About 5 or 6 months after the appendectomy I noticed that the rectal bleeding had changed now to being a few drops of blood inside what I call pus balls.  I was concerned about it, but then in the beginning of 2014 it stopped for a couple months, so I stopped worrying about it.  By the spring it started again.  But my ex was taking me back to court to lower child support, my son was graduating from high school, and my mom was about to have a hip replacement. With all the stress going on in my life I decided to wait until my next doctor appointment in July. I told her I'd like to be looked at in there to see if this was hemorrhoids or something else, so she referred me to a specialist.  The specialist had me take suppositories which didn't clear up the blood-filled pus balls, so she suggested I get a colonoscopy.  At this point I was definitely worried.

By this time it was now mid August, 2014, and after spending 5 days dealing with insurance and trying to figure out where I could get a colonoscopy within my coverage, I was so worried I didn't know what to do with myself.  But I finally got an appointment for two weeks later.  In those two weeks everything started to change.  I began having sharp pains in various places in my low abdominal area.  I sometimes felt a tight squeezing and dull pain in the area of my kidneys and ureters and perineum.  I lost my appetite.  Sometimes I was nauseated, and that's rare for me.  None of these symptoms made sense and I couldn't figure out what could be wrong with me.  I knew it had to be something with my colon, but I figured I was having some kind of inflammatory bowel disease or something like that.  When the pain was most pronounced I could pass a rather large amount of this bloody pus, which was now no longer little balls but nearly a handful.  Yes, I was extremely worried now.

Finally time for my colonoscopy prep.  It was hard for me, being a diabetic, but I followed the prep to a tee and was more than happy to get this colonoscopy out of the way.  I chose to have the propofol so that I wouldn't be awake and worry through the whole thing, and I expected to wake up and be told I had a blockage, or abscess, or fistula or something.  But when they woke me up and the doc came in he said he found a very large tumor in my sigmoid colon starting to go into my rectum and that it looks malignant.  "You have colon cancer," he said.  I was in so much shock hearing that.  I never in a million years expected it to be cancer.  I cried.  I was so scared just at the thought of not knowing how bad or how far it had spread.  My mom had taken me to the hospital for the colonoscopy since I had the propofol and wasn't supposed to drive.  On the ride home all I could think about was telling this awful news to my kids and knowing how sad and upset they would be.  My daughter turned 17 in August and my son will be 19 in November.  All I could think about was that I don't want to die, I don't want to leave my kids this soon, and that I have too many things to do in my life.  I was just so afraid that this was the end for me.