7/10/12 Follow Up Appointment With My Oncologist

It's Sunday, July 8th and I actually had a good day and spent the day at the pool with my sister and some friends.  I was so happy to be able to wrap my arm in some Glad Press 'n Seal and sit in the hot tub.  The pool area at my apartment has been under renovation for months and while I was bummed to not be able to go in the pool, I was happy to at least enjoy bbqing on the grill and soak in the hot tub.  I did get some stares when I was in there. I think most people had assumed that I had gotten a tattoo and was just protecting it but there was one couple who spoke amongst themselves in Spanish about why my arm was wrapped.  "Well she has all her hair but she doesn't have the face of a sick person." I heard them say.  I was caught off guard by their comments as I know Spanish and didn't understand how they could just talk about me in front of me like that.  I guess it doesn't look like I understand Spanish.  I wish people would just ask me questions instead of stare or whisper.  I'm completely open about my cancer and am happy to answer any questions people have.  There was another couple I met in the hot tub that asked me if I had just gotten a tattoo and I told them no, it was a midline catheter because I have cancer.  I ended up striking up a conversation with the female and she seemed very nice.  Meanwhile, my sister's boyfriend grilled some hot dogs and I was able to eat just one.  I didn't want to press my luck and overdo it.

Relaxing in the hot tub. 

The next day, I had my last session with my therapist. Waking up is always a daily battle with nausea.  And today was no different.  I wasn't feeling great so I called and cancelled my appointment.  I really could not get out of bed and I was hoping to get my chest x-ray done today also but I just didn't see myself leaving the apartment.  I'm anxious to get my chest x-ray done because this will only confirm that I have a large pleural effusion in my left lung and I'll be needing another thoracentesis.  But I didn't need an x-ray t tell me that.  I could feel it when I lay down.  There is a lot of pressure on my chest and I can hear myself wheezing.

How my mood has been lately.

Tuesday I have my follow up appointment with my oncologist.  We always do pre chemo blood work and meet the day before I'm scheduled to do chemo.  It's weird not waking up at 8am and heading to the lab.  I have a midline now and all my blood draws will be taken through here.  My sister and I head out to Kaiser but I wasn't feeling good.  I remember frowning the entire time I drove to the appointment.  My sister attempted to make small talk but I just wasn't in the mood.  And again, I blame it on my daily battle of waking up with nausea.  Today I decide to wear a wig just because I want to blend in and don't want to show that I'm sick and not feeling well.  After valeting the car, we check in and the medical assistant, Latishma, takes me back.  There is a student working with her today.  I'm very patient as she takes my temperature and blood pressure.  I can tell she is nervous.   Next I hop on to the scale and I cringe at the number.  I've gained 8 lbs.  Part of me still has that mentality of a woman watching her figure and I'm hard on myself.  But I look down at my belly and I can tell that my ascites is building up.  Besides,  I had weighed myself a week earlier at Kaiser and with there being an 8 lbs difference, I knew it had to be the belly fluid.  I'm taken back to the exam room and I tell Latishma about how I'm having problems breathing.  She checks my oxygen level and I'm at a 96, which is normal.  I know that I'm getting enough oxygen, it just gets very uncomfortable to breathe sometimes.  She leaves the room and almost immediately, my oncologist comes in.  We shake hands and go over the standard questions she asks me every week.  She is happy to see that I have my midline catheter in place.  I tell her how I haven't been doing well lately.  I feel as if everyday it's a struggle to get my nausea and pain under control.  I just always thought for some reason that my first year of treatment would be a breeze.  Since the first 4 months of chemo were pretty much side effect free, I just thought that I would continue to feel that way.  I never imagined that I would take a sharp turn for the worse and just start feeling crappy out of the blue.  It makes me feel like the time I have remaining has been cut in half.  But my doctor reminds me how this cancer journey is a roller coaster ride.  She offers me hope and tells me that while I may not feel good right now, I can still feel better in the future.    

I always have a list of questions that I write out in the note pad feature on my iPhone.  We go over these and there are a couple of things I learned today. 

*I'm currently on 80 mg of Lasix but we decide to bump it up to 100 mg to get this 8 lbs of fluid out of me.  I had noticed that on the lower dose, it wasn't increasing my need to urinate so we had to go up a little.  Ridding my body of this excess fluid will allow me to breathe easier as it is squishing my organs.  

*Chemotherapy doesn't necessarily make me infertile.  I still get erratic periods and at one point went months without them while on treatment but chemo may not always suppress the ovaries. 

*We can keep my midline catheter in for months until it will need to be replaced.  If I get an infection, then it will need to be removed. 

*I was curious as to why I always had to have weekly blood tests while on Coumadin but not on Lovenox.  Apparently, Coumadin is greatly affected by diet while Lovenox isn't.  My doctor prescribes the dosage of Lovenox based on my weight and it will consistently be at the same "thinness" level.  No need for blood test because food doesn't affect my blood level. 

*All stage IV stomach cancers were not created equal.  There is no denying that had I been a surgery candidate that my survival rate would have gone up, but that's just not the case here.  I asked my oncologist just how bad my cancer is.  I figured that since it had spread to my bones, that must mean I'm in bad shape.  But she said I'm somewhere in the middle of the totem pole.  Had my cancer spread to my liver, then that would be at the bottom of the totem pole because chemo affects the liver. She then tells me that the fluid from my thoracentesis had revealed that the cancer has spread to my lungs. My heart sank when I heard this.  I wanted her to double check to make sure she had the right person but at this point, it doesn't matter.  I'm fighting the same battle and I'm fighting it as hard as I can regardless of where it has spread to.  

*Apparently I haven't been taking my morphine correctly.  I am on two different types of morphine.  One is a tablet form that I take every 12 hours and the other is a liquid solution that I can take every 2-4 hours for breakthrough pain. When I wake up in the morning, I take 30 mg of morphine and throughout the day, I'll take 2 ml of liquid.  At night, I had been skipping my dose.  I don't know why it never occurred to me that I was struggling to manage my pain because there wasn't a consistent flow of morphine in my body.  Now that I take the tablets every 12 hours, I noticed that I don't wake up in pain and I use less liquid morphine. It was just one of those duh moments and I wish I had thought it through before instead of trying to come up with my own routine that wasn't working.  

She next did a physical exam on me.  She had me take deep breaths in and out and she told me she could hear the fluid in the left side.  She pressed on my belly and felt that my ascites was acting up and next she prodded on my pelvic region where my cantaloupe sized mass is.  I asked her if it felt bigger to her.  To me, it feels bigger.  But that's just the scared person inside of me thinking that my cancer is growing out of control and that chemo is not working.  She told me should couldn't tell if it was much larger, but we'd have to wait until my next Pet scan in August to know for sure.  I still hadn't done my blood work yet to see how my immune system was doing but she told me that we would proceed with chemo and I would get a Neulasta shot the day after chemo to boost my neutrophils.  

After my appointment, I head on over to the infusion center where Nurse Cynthia will do my blood draw and also change the dressing on my midline.  Cynthia asked me if Radiology had told me to get the dressing changed the next day and I told her no.  Apparently I was supposed to get the dressing changed 24 hours after placement because it is expected that it would bleed and would need to be cleaned up.  While it did bleed the evening after placement, my sister and I just cleaned it up ourselves with alcohol pads.  Cynthia removed my dressing and began the clean up process.  It stung but she did a fantastic job. 

Cleaning my midline.

New dressing!

Cynthia flushed my catheter out and tried getting a blood return but it wasn't happening. No blood was coming through.  I think this is because the midline does not go near the superior vena cava where it gets the blood.  This now means that I'll have to go down to the lab for my pre chemo blood work.  Darn it.  And here I was thinking that the rest of my days would be needle free.

Flushing and looking for blood return.

I get sent down to the lab and while I'm there I also check into Radiology for my chest x-ray. I get called into the lab and I get a tech who is having a hard time finding a vein.  After two failed attempts, she finally draws blood on the 3rd try.  I suddenly see my oncologist walking by and she comes over to apologize for the needle sticks.  Her hopes were that the midline would be able to give me a blood return but since it won't, I can hopefully withstand the poking every 3 weeks.  

I'll be getting needle sticks every 3 weeks. 

Next I head on over and wait in Radiology. I get called back and the process is fairy quick.  Later my doctor confirms that I do need another thoracentesis. Surprisingly I'm not scared. I just want the relief badly.  Our final stop is the pharmacy where I am refilling 9 prescriptions today.  I am forever grateful that I have insurance to cover my medications.  I spent $120 on copays for meds worth $3,000. 

Pharmacy receipt. 

I may not be feeling all that great but I'm looking forward to chemo.  I know that I have to push through and stay on schedule. I'm hoping that chemo #7 is easy on my body.  I always feel better after meeting with my oncologist.  She always answers my questions and helps me with any concerns that I have.  The physical aspect of my cancer journey is one thing.  I can take it.  I can feel pain and nausea with no problems because I know that there are pills to help me manage those side effects.  It's the emotional aspect that sometimes just tears me up so bad inside.  I question myself.  Asking if I'm strong enough to do this.  I'm putting my body through this roughness with no guarantee that chemo will work.  It's a gamble that I have to take and hope is the only thing that I have pulling me through.  I'm not going to sit here with a happy face talking about how I'm kicking cancer's butt because I truly don't know my progress.  And I want to be honest that I have had more bad days than good this time around.  It doesn't make me a weak person.  I see myself as a survivor.  I see myself as a strong person.  Not everyone can go through this battle and still have a smile on their face.  So yes, I'm going to complain when I'm feeling lousy and I'm also going to boast when I'm having a good day.  This is the fight of my life.  I didn't ask for it.  It was just unfairly given to me.  The only choice I had was to be strong.  There were no other options.  I could have quit.  I could have said that I didn't even want to put up a fight, but for me, that was just out of the question.  Because what's important to me is that I cash in on all the time that I have left.  And I want to do it with dignity.  Never would I have imagined that my life would have turned out this way.  I can't change it.  I can only fight and fight hard and hope that a real cure comes along.