Aredia Treatment #3

Today I had my 3rd Aredia treatment.  Aredia is a bisphosphonate for my bones.  Because the cancer has spread to my bones, they are more likely to be weak and Aredia will help strengthen them.  I go in every 4 weeks for about an hour or hour and a half and am hooked up to an IV.  My sister had sent me a text yesterday asking if I wanted her to take me but I didn't want to make a big deal out of it so I told her I would be fine driving myself.

Before heading to my appointment, I stopped by the lab at the Kaiser in San Mateo.  I had to have another INR done today to check my Coumadin level.  I later found out that I was at  1.6 (ideally we want to be between 2-3) which meant that my blood was too thick.  A pharmacist with the Coumadin Clinic called me later on and instructed me on how to take my pills.  2 mg tonight.  1 mg tomorrow and Friday.  2 mg on Saturday and 1 mg on Sunday.  I have to retest on Monday.  I had to write it all down.  Every day it's a different dosage of Coumadin.  I'm constantly getting my blood checked.  This is my life.  How long will it be like this?  Do I just have to get used to getting my blood drawn 1-3 times per week to check my Coumadin level?  I wish that I knew someone else who was on Coumadin so I could ask them about their experience.  I know I have to be on them for the rest of my life.  Later I went on eBay and ordered a medical alert bracelet that has "Taking Coumadin" engraved on it.  I figure that if anything happens to me and I can't communicate this, the bracelet will come in handy.

With my Starbucks in hand, I arrived at Kaiser in South San Francisco at 10:15am.  I let valet take my car and went in to the Orchid Center to register for my appointment. I got my computerized wristband and waited for my nurse to call me in.  Today I had Dawn as my nurse. I have seen her around but had never had her before.  She set me up in infusion chair #1 and asked me where I wanted the IV.  I decided to go with my right hand because my left had bruising from chemo a week ago.  She stuck the IV in and it stung.  I will never get used to needle pokes.  They make me cringe and I can never watch the needle go in, but after a couple of seconds I'm over it.  I asked Dawn about my ascites (fluid build up in the belly caused by the tumors "weeping").  I told her that yesterday I took my usual dose of 20 mg of Lasix (my diuretic) and that I thought my scale was broken because it told me that I had lost 5 lbs.  I assumed it was all fluid because I had noticed that I was peeing every 20 minutes.  She said it was normal and shared a story with me about how when she first started nursing, she bought a pair of size 5 jeans and took a Lasix pill to fit into them.  She lost the water weight but was so weak from it she couldn't function.

Waiting for my Aredia infusion after nurse Dawn hooked me up to my IV.

I waited in the chair with my personal tv by my side for the meds to come in.  I didn't bother turning the tv on, my iPhone is much more entertaining.  The Aredia arrives and Dawn hooks me up, letting it infuse for an hour.  I sit there texting and checking Facebook.  Suddenly I hear a newbie arrive in the chair next to me. Curtains separate us but I can hear everything she is saying.  She tells her nurse that she has questions about the anti-nausea medication.  She talks about how her doctor prescribed Zofran and Compazine but she was anti-drug and wasn't sure why she needed more than one med.  Zofran and Compazine are my good friends.  Newbie says that she is "anti-drug" and doesn't want to just take all these pills.  I so wanted to pipe in and guide her.  Her nurse was doing a great job at answering her questions but I find that talking with fellow warriors about their experiences also is a great source of knowledge and we go through it first hand.  She complains about the side effects from taking all these drugs, which in my experience have been non existent or manageable.  Oxycodone, for example, will constipate the hell out of you (like any good opiate will) but as long as you take a stool softener and Miralax, you're all good.  The problem she had was that she took Decadron right before she went to bed and couldn't fall asleep until 1am.  Decadron is an anti-imflammatory drug we take the day before chemo, of chemo, and after chemo.  My doctor (and also pharmacist) told me not to take it after 4pm as it can cause difficulty sleeping.  I guess she wasn't told this.  See, drugs aren't so bad. You just have to educate yourself about them.  Google the hell out of them, I say!  I really wanted to introduce myself on the way out and ofter her my number in case she wanted to connect but I was too shy to.  

My hour infusion was finished before I knew it and head nurse Cynthia set me up for another Aredia. I go back in on May 30th.  After my appointment, I stopped by the medical assistant's office and picked up the hard copy of my "Do Not Resuscitate" form. My doctor had to sign off on it.  They reminded me to keep it out in a visible place.  It felt weird holding that form.  Knowing that those were the instructions on how far I wanted someone to save my life.  I left Kaiser and went to run some errands before heading home.  I spent the rest of the afternoon watching tv with my cats. 

I went online to the Alaska Airlines website and poked around at flights to go home.  Well not home home but home as in where the majority of my siblings live, Seattle.  I had saved up 74K miles and it would only cost me 25k and $7.50 to fly home.  I was ecstatic!  I checked the calendar in my iPhone to see what dates I had available.  I meet with my oncologist on the 14th, have chemo on the 15th and Aredia on the 30th.  I'm usually knocked out for a good week after chemo infusion so I figured the 22nd would be a good time for me to go and the 29th to return.  I'll be taking my Xeloda (chemotherapy) pills during that time but I haven't had any side effects from them so I'm pretty comfortable traveling on them. My doctor said I was ok to travel as long as I take my list of medications and the notes from our last visit just in case I have to visit an ER and need to get that doctor up to speed on my case.  Even if something pops up or goes wrong between now and May 22nd, I will only lose $7.50.  The only thing that I am concerned about is my Coumadin level while out in Seattle.  I plan on calling the Coumadin Clinic to let them know about my trip and asking them for their advice on dosing during that time.  I know that Kaiser is affiliated with Group Health in Seattle so I'm covered there in case I need to see a doctor or go to the lab.  I'll figure it out.

It's 1am now and I'm anxious for what the morning brings.  Aredia always causes me excruciating bone pain the following day.  In the past I was told to take Tylenol for the pain but it does not work for me!  My doctor suggested I take oxycodone and I have the bottle sitting right next to me.  Last time I woke up at 7am with the feeling that an elephant had sat on me and I just cried while waiting for the Tylenol to kick in.  This time I'm ready for it.  Bring on the bone pain!  2 oxycodone and I'll be knocked out!

Therapy Sessions

Part of my cancer journey involves seeing a LCSW who specializes in talking with cancer patients.  I feel very lucky that Kaiser offers this at no extra co-pay.  I see my therapist about every 3-4 weeks.  He is a very nice man who is compassionate and easy to talk to.  While I have my blog, my Facebook wall, and numerous friends and family to vent to, I really like being able to talk to my therapist about the scary stuff.  I won't go into detail about what I discuss with him but I do talk to him about things that are bothering me or things that I don't want to deal with.  I'm the type of person who finds myself ignoring a problem in hopes it just goes away.  And you know that never works.  I hate confrontation and I hate hurting people.  I'm not a mean and nasty person so I would never come across as rude but I don't like disappointing people.

Today during session I had finally brought in my DNR (do not resuscitate) form to fill out.  I also had my Advanced Healthcare Directive but I need to have a notary sign off on it.  In the beginning of my journey, I was given these forms.  It doesn't mean that I'm giving up or that I'm going to die. It's just something that I have to have in place.  Everyone should really have them set up.  We never know what's going to happen to us and how many of us can say that our loved ones would know exactly what we would want if we were to end up in the hospital unresponsive?  I often think about the late Terri Schiavo and the ordeal her family had to go through.  I would not want that to happen to me.  If I was in a persistent vegetative state, let me go!  So it's important for me to have a legal document in place that speaks for me when I don't have a voice.  It's also important for me to discuss this with my family as to what I want.  It's not the easiest conversation to have, but I think that I'm just going to write an open ended letter with my wishes.  That way there's no question as to what I would want.  It was very strange checking the boxes on the form and listening to my therapist as he explained what each one meant.  I turned in my form and my therapist delivered it to my doctor who had to sign off on it and then it would be scanned into the Kaiser system.  I have to keep a copy of it visible in my apartment just in case something happens and paramedics are called if I'm unresponsive.  I know, not a fun topic of conversation but this is what I have to deal with.  It's crazy.

Therapy is also a place for me to heal from my past.  I have a lot of built up anger from this past year.  I'm not happy with the choices that I made in dating and in "adopting grown men as my children."  I will never understand how a grown ass man can just take money from a girl but I guess that's my fault.  My mom always taught me that a man wasn't worth my time if I had to financially support him.  And look.  When the money ran out and I got sick, who got left holding the bag?  It's funny how they walked out on me.  I can only take it as a lesson and pray to God to find it in my heart to forgive.  Mostly forgive myself.  To not be so hard on myself.  So in therapy I learn how to heal from my past.  I can't change the things that I have done, I can only change now and going forward.

After therapy I stopped by Thaiger Kitchen in Burlingame and had my favorite dish, the pumpkin curry. Some people get weirded out by eating alone at restaurants but not me.  I'm used to it.  I just sat there and took my time eating my food.  My stomach doesn't hold much food like it used to so I went extra slow to try to fit as much as I could.  I also just wanted to savor the moment.  To eat good food in peace.

Afterwards I decided to treat myself to a Pecanbon from Cinnabon.  My eyes almost fell out of my head when I read it was 1,000 calories but I deserved to treat myself after last weeks chemo session.  Took me all afternoon but I finished it proudly.  I stopped by Sears on my way out of the mall and was poking around looking at dresses.  I haven't worn a pair of shorts in public in years and I wasn't in the mood to try on capris.  I figure I could wear dresses this summer to stay cool.  I have a feeling that my wigs and I are going to have issues.  My head gets so hot underneath them!  I was able to find 4 dresses for about $15 each so I was pretty happy.  I hope that one day I'm comfortable to go commando with my bald head.  Right now I don't see that happening.  I'm just too self conscious.  All I want is to blend in with everyone else.  That's why I wear wigs.  You look at me and you can't even tell I have stage IV cancer.  I don't look sick.  And I love it.  I fly under the radar.

Overall, I had a pretty good day.  My cough is getting better and I wasn't in any pain today.  I was so happy to see everyone posting pics of their Team Marta wristbands on my Facebook page.  If I missed anyone, please add me on FB and message me your address and I will send you one out.  I still do have a few left.  It may seem silly but the way that I see it is that I have this army of people behind me cheering me on and that positive energy just burns so boldly.  Cancer really doesn't know who they picked a fight with.

Chemo Infusion #4, April 24th, 2012

Since my PET scan over a little week earlier, I had enjoyed being off of chemo.  I wasn't even taking any pain medication or anti-nausea.  I noticed that Sunday before my next chemo infusion, I started developing a cough that wouldn't go away with my Tylenol 3.  So Monday I decided to email my doctor and tell her that I was having a cough that wouldn't go away and she told me that she suspected I had a virus that couldn't be treated with antibiotics.  She suggested I take Zofran for the nausea and Sudafed or Claritin for the other symptoms.  I could also try Mucinex to break up the phlegm in my throat.  I had a therapy appointment that day but I decided to cancel because I really was not feeling well.  The only thing I had to really get done on Monday was to stop by the lab and get my INR and pre chemo blood work done before noon.  Janet took me to the lab and I sat in the chair.  I know the two ladies that work the lab but today I had a new guy.  I showed him my bruised arms and let him pick where he wanted to poke me.  He chose my right hand.  He inserted the needle and I didn't even feel it.  He did a good job.  But I was feeling so under the weather and discouraged that I started to cry.  He asked me if I was ok and I said I was, that I was just tired of going through this.  We next went the pharmacy where I picked up some Sudafed.

I spent the remainder of the day in bed. I got my results back from my blood draws.  My INR was at 8.1, which meant my blood was too thin.  The Coumadin Clinic called me and instructed me on how to take my pills and to report back to the lab on Wednesday.  I asked my doctor if we were set to do chemo the next day and she said while my liver was just a tiny bit irritated, she felt we could proceed with chemo and she would reduce my Epirubicin dosage by 15%.

Tuesday comes and my sister and her boyfriend come to pick me up to take me to chemo.  I pack my lunch box and bag of goodies.  I almost feel like I'm packing for day camp.  Marita is my nurse today.  She asks me where I want my IV and I show her my bruised arms.  We decide to go with my left hand.  I've learned that the hand take less of a beating than my arms, well in my case anyways.

I spend the next 6 hours in the chair dozing off and playing on my iPhone.  It was pretty boring.  It was finally about 3pm when I had my sister come pick me up.  We headed home and I spent the rest of the evening just relaxing.  I gained 8 lbs worth of fluid from chemo.  The next day I had to report back to the lab and I had a friend take me.  This time, my INR came back at 4.3.  Just a tad bit high (we want it to be between 2-3).  The Coumadin Clinic called and instructed me on how to take my pills and told me to retest on Friday.  Thursday I was still feeling lousy from the cough and the side effects of chemo were finally kicking in.  I felt really nauseous.  I had to double up on the Zofran and sit up on couch so I could breathe comfortably.  

Friday rolls around and I'm back in the lab.  I fight back the tears.  This is my third blood draw this week.  I am feeling lousy and I'm just tired.  Luckily this time, my INR is at 2.7.  Success!  I get another call from the Coumadin Clinic instructing me on how to take my pills and they tell me to retest on Wednesday.  I didn't realize the difficulty it would take to get my blood just right.  And it's not like I can just quit and say that I don't want to do this anymore.  It's my blood.  It runs all over my body.  If I decide to stop taking Coumadin just because I'm tired, I'll run the risk of developing blood clots and then that could kill me.  I have to tell myself that I have to be strong and just suck it up.  It's not a big deal unless I make it one.  After labs, I decided to go to Ross and TJ Maxx to return some stuff.  I have a tendency to buy stuff and then it just sits in the shopping bag so then I have to return it.  While at Ross I did pick up 2 dresses and I felt fine.  I felt I had my nausea under control.  My next stop was the post office.  I waited patiently in line with my shoe box full of cards I was mailing out for Team Marta.  I was called up by the next clerk who helped me figure out how much more postage I needed on my envelopes.  I had 51 cards to mail out.  All of a sudden I started to get hot and I felt really sick.  I asked the clerk if they had a bathroom I could use and she said no, that it wasn't for public use.  I told her I was a chemotherapy patient and i was getting sick.  She walked to the back to get her supervisors permission and all of a sudden my vision went gray.  I was so dizzy.  I could hear the supervisor calling me from across the room and I struggled to find my way over to her.  I could hear customers asking me if I was ok and I shook my head no.  The supervisor grabs me by the arm and asks me if I could see and I told her barely.  She took me into the back to what looked like a locker room.  I headed into one of the stalls and I try to vomit.  My wig is making my head burn up and I take it off.  I just need to sit down and relax.  I come out of the stall, with my bald head and wig in hand.  I wash my hands and splash cold water on my face.  I fan myself to try and cool down.  I tell the supervisor that I just had chemo on Tuesday and while I had been feeling fine earlier, I just got dizzy all of a sudden.  I take a few deep breaths and we head back out to finish the transaction.  I buy my postage and the supervisor kindly offered to put the stamps on my envelopes for me.  I thanked her and walked out to my car.  I just sat there and cried.  It scared me that I had lost my vision for a few minutes.  And I was angry that I was not normal.  I hated that I was going through this.  Why couldn't I just be a normal girl at the post office buying stamps?  Why did I have to be a chemotherapy patient that had to take it easy?

Sleeping at night has been difficult for me. If I lay down, the phlegm in my throat gets so bad that I start having a coughing attack and I can't catch my breath.  And it's uncomfortable to sit up and sleep.  Any position I tried, I could not get comfortable.  Finally on Saturday morning, I had my sister bring me some Mucinex and Benadryl.  At this point, my body ached and my throat just felt like it was closing up on me.  I tried taking pain meds but they weren't helping.  I finally broke down and cried.  I hated my life.  I was tired.  I just wanted to go to the hospital and be placed on a ventilator.  I didn't want to do this anymore.  I wasn't enjoying life and I thought about the last time that I was normal and happy.  I thought about what it was like to go to work and live a normal life.  The physical pain was just excruciating and I doubled up on oxycodone, praying that it would help.  I can't even bend over without getting dizzy or getting into a cough attack.  All my hard work just flew out the window.  I wasn't thinking about the progress I had made.  How my cancer was gone from my lymph nodes or how my pelvic mass had shrunk.  All I could focus on in that moment was the pain that I was in and it just felt like the end of the world.  I kept thinking about how my health must be deteriorating and that it must mean that I was losing the battle.  I asked my team for help and they came through.  The pain slowly went away.  I distracted myself by watching a Nexflix movie and took some more Benadryl, hoping to get a decent nights sleep.  And I did.  I woke up today, Sunday, feeling a bit better.  I immediately took my pain meds.  My spirit is coming back and I don't feel so defeated.  

This journey has been one hell of an emotional roller coaster.  I can try and beat the pain before it sets in, but I can't control the emotional part.  I have to remind myself that I am human and that it's ok to lose it sometimes.  I know that I'm not going through this alone, that I have a lot of people who love me and who are rooting for me, but sometimes it feels like I'm the only one who could possibly understand what I'm going through.  I hate that it's a gorgeous, hot day outside and I'm stuck indoors because I don't feel good and I fear of getting sick out there.  But tomorrow is another day and all I can do is dust myself off and try again.