Tuesday, July 10, 2012

Not a Port, Not a PICC Line But a Midline

July is here and I can't believe that it has now been 6 months since I started my cancer journey.  Had I just let my cancer eat me alive and refuse chemotherapy, I would have been dead within 6-12 months.  My cancer is a sneaky little bastard but with the help of chemo, I'm showing it who is boss.  July is also a very special month because it is my 31st birthday on the 29th.  And I'm very pleased to announce that many of my siblings from Seattle (including my mom) will be traveling down for my birthday.  It really means a lot to me to have them here and help me celebrate since we don't know how many more birthdays I will get.

It's Monday, July 2nd, and I'm waiting for a call from radiology with a new appointment time to have my midline catheter placed.  I'm super anxious as my next chemo is set for July 11th and since we have a holiday this week, 4th of July, I'm not sure if I will get my midline done before my next treatment.  I guess I could keep getting needle pokes for a little while longer but my veins have really had it.  I call radiology all day but I keep getting voicemail.  I don't leave a message, hoping that if I call again in half an hour that I would get a real person.  Finally at about 3pm, I decide to leave a message.  I tell Jackie, the woman who's voicemail it is, that I'm wondering if I can get my midline placed before July 11th and ask her to call me back.  Luckily within 10 minutes, I get a call back.  Derek tells me Jackie is on vacation this week and that he'll look at the schedule for me.  There is an opening at 10:30am tomorrow if I'm available.  Of course I'm available, I tell him.  I ask him if I should stop Lovenox for the night and he tells him he'll call me back after he asks the radiologist.  I get off the phone and tell my sister about my new appointment and tell her that we need to be at the hospital at 9:30am.  I'm so happy.  Derek calls me back, confirming that I need to stop Lovenox just for tonight.  He says that no blood work is needed before hand and that they'll only be using local anesthesia.

I wake up on Tuesday and report to Kaiser in South San Francisco at 9:30am.  I didn't have anything to eat or drink since the night before and the only pill I took was my oral chemo pill.  My sister is with me and we valet the car.  We see that they are having a Farmer's Market today and take a look at the tables before heading towards admitting.  There is a lady selling beautiful orchids and I want to make sure I get one on the way out.  At admitting, I meet Virginia again.  I tell her about how I wasn't able to get my port last week because the doctor had found blood clots as I was on the table.  She told me she would cross her fingers for me, hoping that the midline placement would be a success.  She places a lovely wristband on me and sends me over to radiology with paperwork, where I turn it in to the receptionist.  We sit down in the chairs and wait to be called back.  Within a few minutes, a nurse calls me over and I tell me sister to come with me.  I'm insistent up this.  We head back to the room but my sister waits outside for a minute as the nurse, Donna, gets me into my bed and hands me a gown.  I see Igor and Yolanda from last week and Yolanda greets me.  I tell her how I'm back hoping that I can get a midline today.  Donna takes my vitals and places stickers on my body that are attached to some machine that will monitor my heart.  We go over my list of medications.  She goes and let's my sister into the room.  I ask Donna if she is going to start an IV on me but she tells me that it isn't necessary since they are only using local anesthesia.

Donna placing stickers on my body. 
Ready to get my midline!
I'm happy to see that Dr. Nelson is the radiologist who will be performing my procedure today.  She comes over to greet me and tells me more about what is going to happen today.  She tells me that they typically place the midline on the right arm but if I have a strong preference to place it on the left, they can.  I inform her about my blood clots that had presented themselves on my neck and right arm a couple of week ago and say that it's probably a good idea to use the left arm and she agrees.  It takes months for blood clots to dissolve so I didn't want to start the procedure on the right arm only to be stopped because she found blood clots.  Dr. Nelson tells me about the risks of the procedure and says that since I'm on blood thinners, the worst that will happen is that today the incision will seep blood.  She tells me how I will have the catheter hanging out of my arm and it will be covered by a dressing that will need to be changed once a week in addition to being flushed. They will give me a mesh sleeve to wear so that the catheter doesn't snag on anything.  I sign the consent form and tell her I'm all ready.  My sister leaves the room and waits outside as I'm wheeled into the procedure room.  The procedure will be done using sterile technique. I roll on over to the table and I lay there.  It is so cold.  I get one thin blanket to cover my body and I'm shivering. Yolanda places a big cap on my hair to cover it and they prep my left arm.  Yolanda holds my left arm up as Mayra uses a solution to sterilize my arm.  I look away so that the solution doesn't splash into my eyes.  They put a tent up around my head and I cannot see what they are doing.  I'm all ready to go and my left arm is extended out.  Dr. Nelson enters the room.  She announces what they are doing and it is all very organized.  There is a nurses assistant in the room and she stands behind a clear plastic partition that is specially put up to keep the procedure completely sterile.  Dr. Nelson injects my arm with Lidocaine to numb it up.  It doesn't hurt much but it does sting.  I always tell myself to suck it up and remind myself of all the tattoos on my body.  She uses an ultrasound to help identify where the catheter will go in and to help guide her.  She measures how long the catheter will be and I hear her saying that she's going to start inserting it.  I wasn't in any pain, it was just uncomfortable.  And then there was a part where she was placing a lot of pressure on my arm and it just felt weird.  I'm so glad I could not see what she was doing.  Within minutes, she was done.  My arm felt very strange and I think it was because of the Lidocaine.  I look at my arm and there is a plastic tube hanging out of it with a clear bandage on it.  She tells me that I can go ahead and move my arm around like normal.

My new midline!
They wheel me out of the procedure room and back to my bed.  My sister is allowed back in and she helps me get dressed.  I notice that there is bleeding just as Dr. Nelson said would happen and I tell Donna about this.  Igor comes over and cleans it up, putting a new dressing on.  Donna gives me a couple of bandages and other supplies just in case I have more problems with blood seeping out tonight. I'm handed a mesh sleeve to put over my midline to cover it up a little.  It reminds me of a hooker because it looks like a piece of white fishnet stockings.

What the mesh sleeve looks like.
They allow me to leave and we head on over to the cafe where I grab a smoothie.  We browse the tables at the Farmer's Market before retrieving my car from valet.  I'm able to buy my purple and white orchid and some kettle corn.  I make my sister drive home since my arm is still numb from the Lidocaine.  We arrive at home and I change into my pajamas.  I plan on resting up and sleeping.  I announce on my Facebook that my midline was a success.  I got a tip from another cancer warrior about taking tube socks and cutting them up to make sleeves for my midline.  I check my sock drawer and find a pair of fancy knee length socks.  I cut them up and it made a very nice sleeve.  Much more stylish than the one I got from the hospital.  

My homemade sleeve. 
It's now the 4th of July and I decide to stay home and rest.  The property management at my apartment informs us that the pool that has been under renovations for months is now open.  I am super bummed out because I was looking forward to using it and now that I have my midline, I can't submerge my arm under water.  When I take a shower, I now have to wrap my arm in Glad Press'n Seal so that it does not get wet.

What shower time will look like from now on.
I'll admit.  Sometimes I take a shower every other day because it's such a hassle wrapping my arm up.  And I've noticed a huge decrease in my energy level, too.  I'm always fatigued.  My appetite has been slowly disappearing and at one point, I just could not bring myself to eat anything.  It was towards the end of the night on the 4th when I noticed that I had hardly eaten anything. I felt like there was something stuck in my throat and my stomach felt full.  The next day, I emailed my doctor about my concerns with my loss of appetite.  I told her that I felt full when I woke up that morning and I had an empty stomach.  She told me that if the cancer in my stomach was growing, it could cause me to feel full.  I felt so discouraged.  Since we had done a CT scan on June 4th, my doctor wanted to wait two my chemo cycles before we did a PET scan to see what was going on.  I would do the scan in August and then we'll know if my cancer is growing or not.  But we were going to give chemo a chance to slow it down and perhaps even to shrink it.  She also asked me to feel my pelvic mass to see if it felt bigger.  Almost nightly, when I lay down to sleep, I always feel my pelvic mass. I knew that it felt bigger.  I was just in denial and had high hopes that my cancer is shrinking and I didn't want to admit that it felt bigger.  I told my oncologist about this.  For now, I was increasing my dosage of morphine to help with the pain.  When I wake up, I have a strange feeling in my stomach. It is a weird pain.  It makes me feel gross.  I take my liquid morphine and it kicks in fast.  It takes all this pain away and I feel completely normal.  I don't feel high or loopy.  Morphine doesn't make me sleepy anymore.  It has really been a miracle drug for me.  I also ask my oncologist if she can order a chest x-ray to see how much fluid is in my lungs.  I know that it's time for me to have another thoracentesis.  When I lay on my back, I feel as if there is something on my chest weighing it down.  And when I cough or sneeze, it feels weird.  I also caught myself wheezing one night.  At least now that I've had the procedure done before, I know what to expect and I'm not scared.  I'm just saddened that the fluid had returned.  The fluid in my belly, the ascites, has also returned.  I look in the mirror and I can see that my belly is sticking out.  I'm now on 80 mg of Lasix but I see that it is not increasing my need to urinate after a few days of taking it.  I decided to take one of my old 20 mg pills in addition to the 80 mg and I see a difference.  100 mg is what works to help me rid the ascites.  

 I attempt to eat every couple of hours, even if it's just a few bites. On Friday, I wake up craving Thai food.   It's noon already so I call in an order to my favorite Thai restaurant and go pick up the food.  I am happy that I eat a very good portion.  This eases my fear that the cancer in my stomach is growing.  If it was, how could I possibly fit that much food in it?  I'm now noticing that it's a daily struggle to wake up and manage my pain.  I cannot function without the liquid morphine. I am in bed hating life if I don't have it.  Once it kicks in, I'm more likely to want to get out of the apartment.  I'm not quite ready to get back into traveling since my lungs are not at their best right now.  And I'm still struggling to find my energy.  One night, I was having a lot of pain and the thoughts in my head just came crashing down on me.  I started to question why I was doing this.  I asked myself if this was it, was I coming to the end of my journey.  I'm always afraid that cancer is winning and that I'm lucky if I have a few more months to live.  But I have to trust that my doctor is treating me in the best way possible and that I can fight this. It's such a scary journey, but I'm happy to have connected with other friends in the cancer community that have helped me during the rough moments.  They help get me through them and encourage me to stand up to cancer and keep fighting.  I'm also grateful to have a lot of people cheering me on through Facebook.  Their words of encouragement mean the world to me.  I couldn't imagine fighting this cancer without anyone there to offer their support.  They help keep my spirit up.  It's true what they say, no one fights cancer alone.  

Pet therapy:  resting with Molly at my side.