PET Scan Results: Are we progressing???

It was Friday, April 13th, that I had my PET scan scheduled at 8am at Kaiser Santa Clara.  My sister and her boyfriend came over that morning to drive me down to my appointment.  I had to fast but that was ok because I was so anxious.  We had just gotten done with 3 chemo infusions and endless amounts of Xeloda (chemo pills).  This was the test that was going to tell us if we were killing the cancer.

We arrive in Santa Clara and check in.  I'm called to the back and taken in to a little room.  Jenny, my tech, checks my blood sugar level and it's normal.  She then proceeds to inject me with radio active solution.  She tells me to kick back for 55 minutes.  I lay on the gurney and she covers me in blankets.  I try to nap but I had one eye open the entire time.  When my time was up, she wakes me up and I make a quick stop to bathroom.  I'm then met by another tech who has me lay on the gurney attached to the PET scan machine.  She straps me in, puts a blanket over me, and instructs me to lay my arms over my head.  I know the drill.  I try to relax and close my eyes.  The bed moves in and out of the donut shaped whole.  The scan itself doesn't take too long.  My tech comes back in when it's over, unstraps me, and has me wait in the waiting room while she takes a look at the pictures.  She comes back to tell me she got all the pictures and lets me out to the front where my sister and her boyfriend are waiting for me.  I know the tech can't say anything about what they see and this scan has to be compared to my initial scan anyways.

We head on out to Starbucks and then back home.  I stop by the lab at the Kaiser in San Mateo since I have to get my INR test done.  This test will determine the clotting tendencies of the blood, in the measure of Coumadin dosage.  Ideally we want my level to be between 2-3.  Later on when my blood test results came back, I found out that it was at 8.2, meaning my blood was way too thin.  I'm instructed to stop the Lovenox shots (YAY!!!) and also to stop Coumadin for the next 3 days.  I need to go in for another INR test on Monday.

That Friday evening, two of my sisters from Seattle fly in.  We had planned a girls weekend.  There are 5 girls in my family and 4 boys.  Yes, 9 of us and I come in at number 8.  Then Saturday morning, another sister from Seattle flies in.  We are all together again.  We each pack a light overnight bag as we're headed out to the Carmel/Monterey area for the weekend.  We drive on over taking the scenic route.  We arrive and pick something up at a cafe and head on over to the beach where we explore and take pictures.

Beach at Carmel, CA.

The next day we head on over to Monterey and walk around the Wharf. We also stopped by at the Mission in Carmel which was really gorgeous.  In the afternoon we decide to head on back home.  Tomorrow is the day I get the results from my PET scan and I am still anxious.  I couldn't sleep that night.  I had a million things going through my head.  I had a fear that my doctor was going to tell me that my cancer was spreading.  I was afraid she was going to tell me that it was now in my lungs, too.  

My appointment wasn't until 2pm the next day.  My sistesr and I woke up and I had the awesome privilege of doing 3 of my sister's make up.  Make up is one of my passions and I learned it all on my own by watching plenty of YouTube tutorials.  One by one, I made over my sister's faces and I must say, I was really happy with the end result.  Eyeshadows are my favorite and it took me a while to learn how to blend like a pro.  

Waiting for the PET Scan results.

We head on up to South San Francisco and arrive 20 minutes early.  I check in and only after about 10 minutes, I get called back. They have a new medical assistant today who is taking my vitals.  He had problems getting my blood pressure, so after trying 3 times, he let the other girl do it and she was able to get it.  I had one of my sisters come back into the room with me and we waiting patiently for my doctor to come in.  There's a knock on the door and she enters, saying hi to my sister and then me.  She sits down and asks me how I'm doing.  I say I've been feeling better since I started the Coumadin.  She says she has my results from the PET scan which we will go over in a minute but first things first.  She asks me the basic questions she asks every time I see her.  Any nausea? Any vomiting?  Any mouth sores?  The list goes on.  Then we go over my medications and refill the ones I need.  Now it's time for the big reveal.  She hands some some papers, which is the radiologist report.  She tells me, "I have some good news." My heart melts...in a good way.  The cancer in my lymph nodes and omentum is gone.  The cancer in my bones is still there but has improved, same as my stomach.  Now the pelvic mass that originally measured at 22cm has now shrunk down to 14cm.  I start to cry.  Chemo is working.  Losing my hair, being constipated, being in pain, feeling nausea....it has all been worth it.  This is what we are trying to achieve.  I ask my oncologist what the next step is.  We do another 3 cycles of chemotherapy just like the first round.  An infusion for 6 hours, every 3 weeks, and 2 doses of Xeloda the entire time everyday.  After we get done, we'll do another PET scan to see the progress.  Hopefully we see more shrinking but there's always that risk that cancer outsmarts the chemo.  My doctor allows me to take a holiday from chemo for the week since I deserve it, and I also want to be completely drug free and not have any nasty side effects while my sisters are there.  I'll start chemo #4 on Tuesday, April 24th.  I ask my doctor the questions I've complied in my iPhone and then we say our goodbyes.  I see my sisters in the lobby waiting for us and I hand them the radiologist report, telling them I'm kicking ass.  I'm winning.  We head on over to the pharmacy to pick up my meds for next week.  I'm super excited and we decide to go celebrate by getting our nail done.  

I spend the week with my sisters enjoying out time together.  We eat lots of food and go shopping.  I can't begin to explain the dynamics between my sisters and I.  We each have very different personalities and when you put us together, there are tons of laughs.  It's alway hard to say goodbye at the airport when they have to leave.  There are always tight hugs and tears in my eyes.  I wish they lived down the street from me.  At this point, I wouldn't relocate back to Seattle.  I've been in the Bay Area for 11 years now and have created a little home for me here.  And I'm extremely pleased with the care I've been getting at Kaiser.  For now, we'll just have to fly back and forth and visit.  

Tomorrow is Tuesday, April 24th, and I'm going in for my chemo infusion.  I had my blood work done this morning and my doctor said she reduced the Epirubicin dosing by 15% since my liver was a little toxic, probably caused by the chemo.  I also had another INR test done this morning and my blood was too thin again so I'm off of Coumadin and will retest on Wednesday.  Today when I had my blood draw, I cried.  I didn't cry because the needle hurt.  I cried because I was tired.  I had developed a cough over the weekend (which my doctor said sounds like the virus that has been going round).  Codeine has not been helping suppress my cough and I've been vomiting when I wake up.  I get nauseous a lot and my body feels week.  I just feel crummy.  So as the tech was drawing my blood, tears rolled down my face.  He asked me if I was ok, and I told him yes, I was just tired of this...tired of being sick. I can't be expected to have a smile on my face and to be strong at all times.  I'm human.  And I'm emotional.  And when you feel sick, you get irritated.  I'm just hoping that I wake up in better spirits.  I've got my soldiers ready and we're going to kill some cancer tomorrow.  I plan on taking Ativan and just sleeping the entire time.  Cross your finger for me, everyone!  I need all the physical strength I can get. 

I love my sisters so much.  

They have been there every step of the way for me.

Walking Bomb: Blood Clots

It was last Friday night, April 6th, that I started feeling a little funny.  I had gone out to dinner with my friend Alicia and then followed that by hanging out with my friend Anthony at his spot watching movies. I felt a little funny in my chest but I figured it would go away.  Then Saturday rolled around and I had a wedding to attend for my coworker.  The ceremony was at 2pm but my breathing was feeling weird and I had a cough.  I had a body ache too and I chopped it up to the Aredia treatment so I just decided to take some oxycodone.  I went to the wedding and I felt ok.  I took a lot of pictures but I found myself holding my chest every time I coughed.

My sister and I at the wedding.

We got home from the wedding and I got into my pajamas.  We soon went to sleep and then I woke up at around 1:45am.  My head was sweating and I felt like I was burning up.  I started having pain in my lungs.  It was hurting when I would breathe in deep, cough, burp, or hiccup.  I was also feeling stiff as I got up and attempted to lay back down.  I took my thermometer to the bathroom to check my temperature.  I was at 100.9.  Crap.  I took 2 Tylenol and went to go sit in bed.  It was hard for me to lay down and so I decided to go into the living room with my phone.  Anytime I have a temperature above 100.8, I'm supposed to call my oncologist or the advice nurse.  The last time I had a fever, they advised me to go to the ER since it was after hours.  I wanted to wait for the Tylenol to kick in and lower my fever but I just had a feeling.  I was also worried about blood clots and sepsis.  I dialed up the advice nurse and the wait time to speak with one was 30 minutes.  I felt so discouraged.  But Dash came over and sat on my lap.  Dash (my male cat) is very independent.  He is not a lap cat.  He does not cuddle.  He likes to greet people, be petted, and play with those wands with the feather attached.  So by Dash sitting on me, I knew he was trying to tell me something.  I think he was trying to tell me that something was wrong and to be patient, to just stay on hold.  My sister came out of the room and asked me if I was ok.  I told her that I had a fever and my breathing felt funny so I was calling the advice nurse.   She went back to lay in bed and waited for me.  Finally after 23 minutes, I was able to talk to an advice nurse.  I identified myself as a chemotherapy patient, told her I was having a fever and had some pain with my breathing.  I told her I was also worried about blood clots.  I had researched blood clots and it sounded like me, except for the part about coughing up blood.  The nurse advised me to go to the ER so I rounded up my sister and we headed out.

We made made it to the ER at Kaiser South San Francisco at about 2:40am.  They gave me a mask to wear since hospitals are filled with germs and then I sat down with the triage nurse.  I told him my symptoms again, told him I was concerned with blood clots, and he took my temperature.  I was at 99.7.  Looks like the Tylenol was kicking in but I was burning up still.  They secluded me to a room and I waited for the doctor.  My doctor finally comes in and I again tell her my symptoms, telling her about my fever and pain with breathing.  I also mentioned to her that I was always on the lookout for blood clots since I was undergoing chemotherapy.  She told me she would run some tests.  She said something about running a test but negative results didn't necessarily mean I didn't have blood clots so she said she would run an angio CT.  My nurse came in and she poked me in the arm to retrieve my blood.  She took about 6 vials of blood.  I tried to lay as comfortably as I could in my hospital bed but it hurt to breathe and I felt so much pressure on my left lung.  Finally after about 2 hours, my nurse asked me if I wanted something for the pain.  I should have said something earlier, but I am one of those people who will push through and suck it up.  She gave me a shot of morphine through my IV and I waited for it to kick in but nothing.  I asked for another shot and she gave it to me.  I was then wheeled away to the radiology department where I had a chest x-ray done.  

Back in my secluded room, I was still feeling pain so I asked for an additional shot.  The doctor came in and told me that I had pleural effusion.  According to Wikipedia, pleural effusion is "excess fluid that accumulates between the two pleural layer, the fluid-filled space that surrounds the lungs.  Excessive amounts of such fluid can impair breathing by limiting the expansion of the lungs during ventilation."  I am not new to this since when I started having symptoms back in December, my primary care doctor had ordered a chest x-ray and found this. I asked the doctor why I was having pain and she said it was pleurisy.  Pleurisy is inflammation of the pleura.  She said typical protocol would be to admit me but she would double check to see if that was necessary.  I really didn't want to be admitted since hospitals are not a happy place to be.  She came back and told me that I could be discharged but that she was going to give me a round of antibiotics.  She told me to take oxycodone for pain.  I asked for one more shot of morphine before I left and it kicked my butt.  I remember feeling loopy but it definitely took the pain away.  It was at around 8am when I was finally released.  No angio CT was every performed and I don't know why.  I went home straight to bed.

I woke up at around 12:30pm and since it was Easter Sunday, my sister, her boyfriend, and I decided to head down south to go see Hearst Castle.  I packed some belongings and we got into the car.  I took 2 oxycodone for the pain and it kicked my butt.  We headed south on hwy 1 and stopped along the way to take pictures of the coast.  I slept most of the time but we finally made it down to Cayucos where we were going to stay for the night.  As the evening drew, my lung pain started to come back.  It was cold and windy and breathing in that cold air hurt so bad.  But I put my big girl panties on and I pushed through the pain.

Gorgeous sunset in Cayucos, CA.

Back at our hotel, we settled in for the night and I took 1 more oxycodone for the pain.  I had to sleep with about 4 pillows in a reclined position as my breathing was unbearable when I laid down.  In the morning we woke up and headed to Hearst Castle in San Simeon.  I took 1 Tylenol 3 and 1 oxycodone for the pain.  I knew the codeine in the Tylenol 3 could help my cough.  I called my oncologist at 9am.  I spoke with the medical assistant and told her about how I was in the ER the previous day and she patched me through to my doctor.  My oncologist told me to hold on a second while she looked over the ER notes.  I told her how my breathing was still painful.  She told me that in comparing my chest x-ray to the previous one, the amount of fluid looked the same.  My pleural effusion didn't cause me any pain in the past, just an annoying cough.  I told her I was concerned about blood clots but that there was no angio CT done in the ER when the doctor said she would order one.  My doctor agreed that we needed to rule blood clots out.  I told her I was down south but could come in tomorrow for the CT scan.  We scheduled an appointment for 10am Tuesday and she told me to stop by her office after my appointment for the results. She also advised me to take 2 Tylenol 3 and 1 oxycodone for the pain.  I took an additional Tylenol 3 and by the time we hit the castle, I felt better.  The pain seemed controlled at this point and the only problem I had was walking up 100 stairs to get to the tour of Hearst Castle.  I was huffing and puffing by the time I reached the top.  

Hearst Castle. 

It's Tuesday, April 10th and I'm headed to my angio CT appointment.  I check in and get called fairly quickly.  I'm greeted by a tech who will start my IV.  He pokes my right arm but nothing.  He pokes my left arm but nothing.  He asks if he can try one more time on my right arm at a different location.  I say go ahead.  As much as I dread being poked, it has to get done.  I'm sure he's been doing this for a long time and my veins are just hiding.  3rd times a charm and we get the IV started.  I head over the the CT scan room and lay in the little bed.  They tell me that I'll get a shot of iodine that will show blood clots in the scan.  There's also a part where you get some solution in the IV and it makes your body warm and it feels like you're going to pee.  Very weird feeling.  So I get slid into the donut shaped device and it tells me to breath in.  It's over in a matter of minutes.  The tech tells me to sit outside the room in the chairs.  Ok.  Normally they tell me I can go and that my doctor will call me with the results.    The tech says he needs to talk to my doctor as he's not sure if he needs to leave my IV in or not.  Now I know something is wrong.  Tears escape my eyes and my mind starts racing.  The first thing that pops into my head is that my cancer has spread to my lungs.  It's my worst fear.  I wipe my tears and collect myself.  I wait patiently and then the radiologist appears.  She tells me that she needs to go talk to my oncologist and she'll be right back.  I wait.  She finally comes back and says that my IV can be removed and that I need to go see my oncologist right away.  

I head on over to the Orchid Center (it's within the Kaiser Hospital, just the name of the oncology wing) and ask for my doctor's nurse.  She comes out to get me, takes me vitals and sits me in a room.  I wait about 15 minutes and she comes in.  You have blood clots in both your lungs she tells me.  I start to cry.  I knew it.  Dash knew it.  Something was very wrong with me.  Blood clots can kill if left untreated.  I started to get mad.  What would have happened had I not spoken up and called my oncologist?  Were the blood clots going to catch up with me?  Would it be too late then?  I was released from the ER without being checked for blood clots.  They could have caught them on Sunday.  My doctor tells me that I have to start Lovenox shots and Coumadin (these are anticoagulants) immediately.  She also says I will be on Coumadin for the rest of my life.  I have a choice of either being admitted into the hospital and being treated or I can get my meds and give myself the shots at home.  Of course I choose the latter.  Kaiser has an Anticoagulation Clinic that will monitor me and a pharmacist will call me to instruct me on how to take my new meds.  I pick them up and the head nurse at the Orchid Center teaches me how to give myself the shots.  It was nauseating!  Luckily, the pain will disappear within in a few days but the blood clots themselves will take months. 

The lovely Lovenox shots I have to give myself twice daily.  

I'm instructed to take 5mg of Coumadin at night and to do the shots every 12 hours.  It's such a chore giving myself shots and I cringe every time I do them.  I'm to get a blood test done on Friday, it's called an INR test, that will check to see how thick or thin my blood is.  Ideally we want to be between 2-3.  Below is too thick, above is too thin.  On Friday I go in for my blood test and within a few hours, the results are ready.  I'm at an 8.2.  Too thin.  The pharmacist calls and instructs me to stop shots and pills for the next 3 days, that I'll need another test on Monday morning.  I know it's going to take some patience and time to get my levels just right but for now I'm happy that I don't have to give myself shots.  I also get to invest in one of those fancy medical alert bracelets that says I'm on Coumadin.  Should anything ever happen to me in an emergency and I can't tell doctors that I'm on Coumadin, this bracelet will come in handy and notify them.  There is so much to learn about Coumadin.  How I might bleed more easily now, bruise easily, no more contact sports for me, I have to notify the pharmacist if I want to take anything over the counter....the list is endless.  But this is my life now.  

Aredia Treatment #2

Last Wednesday on April 4th, I had my 2nd Aredia treatment. (Aredia is a bone treatment that I do monthly since my cancer has spread to my bones and it will help strengthen them).  I got to Kaiser for my 10am appointment and was feeling great.  Because Aredia causes bone pain, I thought I would get a head start and go ahead and start taking Tylenol.  I walked into the infusion center and they were pretty busy.  Most of the chairs were filled and I took my spot in the corner.  My nurse came over and we took a look at my arms.  I still had my bruising from my last blood draw and from my genetics testing blood draw.  I told her I wanted to get the IV in my hand since the last time I had Aredia, I developed a reaction at the injection site.  The infusion this time around took a little over an hour.  I mostly just rested and played Draw Something on my phone.

Waiting for my nurse to start my IV.

The next morning, I woke up at 6:30am with intense bone pain.  It felt like an elephant had sat on me and broke every bone in my body.  I got up immediately and took some Tylenol.  I'm taking Tylenol for the pain as this is what the nurses suggested.  I laid back in bed and just cried.  It hurt so bad and I started questioning myself.  Why was I putting my body through this?  This pain was worse than the pain that chemo made me feel.  I finally went back to sleep an hour and a half later.  I woke up again at noon time and the pain was still there.  I took another dose of Tylenol but this time I decided to take some Ativan as well.  I just wanted to stay asleep so I didn't have to feel anything.  It was finally around 7pm when I decided to come out to the living room and watch TV.  I bundled up with a blanket on the couch.  My body was stiff as a board and I was so cold.  It was very hard for me to get up and turn the heater on.  Then this idea popped into my head.  I decided I was going to give medical marijuana a try.  Back in February, I had gotten my medical card and supplies.  I had tried it once since diagnosis but I wasn't really comfortable doing it since my old school Mexican mom is living with me as my care taker. But now that she is on break and back in WA, I was definitely ready to try it again.  And I was in so much pain that I was willing to try anything.  I went into the bathroom with my vaporizer and loaded it up.  I wasn't sure how many hits I was supposed to take.  I went slow.  It did make me cough a couple times.  I went back to the living room and sat on the couch again.  I was amazed at how I was feeling. I was sitting up at this point with the tv on and my Mac in my lap.  I felt more relaxed and the pain felt lighter.  I think I found my answer to bone pain.

Let me take a minute to explain my views on marijuana.  I was never a recreational user.  In my 20's, I did experiment socially and had tried it with friends but it never did anything for me.  I didn't really care if anyone around me did it but deep down I thought people who smoke marijuana were pothead losers.  But then I got sick and I read a lot about the use of medical marijuana by cancer patients in many forums.  I was open to the idea but I continued to use codeine and oxycodone for my pain if I ever had it.  Just in case, I had my supplies and marijuana stash ready.  Then I came to this conclusion.  Marijuana is a plant.  It is not addictive.  You can't overdose on it and it won't kill you.  Yes, people smoke it socially to get high.  No, it's not a gateway drug to other more dangerous illegal drugs.  Does it make me want to take heroin? No.  Drinking on the other hand is legal.  People do it socially, to relax, to enjoy it, to get drunk...the reasons are endless (as with marijuana).  You can overdose on alcohol.  It can poison you and can kill you.  Worse, you can kill someone else when you drink and drive.  I actually gave up drinking a few months ago around the time I started getting symptoms.  And believe me, when I was in my early 20's, alcohol made me feel so uninhibited I did things am not proud of.  So I'm not sure why marijuana is illegal yet there are worse things out there that are legal.  Take my oxycodone for example.  It's legal while I have a prescription for it.  It's basically synthetic heroin.  It is highly addicted and comes with horrible side effects like my favorite, constipation (insert eye roll here).  And if I take the whole bottle, it will most likely kill me.  Until you have cancer pain, do not judge me on how I choose to alleviate my pain.