October Appointment

This week's appointment was chocked full of information!

1.) No scans at this time. It is too soon after radiation and this can cause false positives on a PET or CT scans. I'm still radioactive! Next appointment with my oncologist will be in January- every 3 months. We will scan then. Blood levels looked fine for my length out of chemo although I'm currently anemic.

2.) While I was hoping it was in my head, the left side of my neck is puffy. Hodgkin's usually follows a very predictable path so if relapse were to occur it would likely appear in the original spot- on me, the left side of my neck. The oncologist examined me from head to toe and rummaged through every lymph node possible down to my ankles. It was practically more invasive than a pap smear.

3.) I have not allowed the left side swelling to completely WIG me out. My oncologist does not feel lymph node activity and remains (partly) convinced that the swelling is residual from my port removal 1.5 weeks ago. It could also be built up scar tissue from treatment and radiation. We are keeping our eye on it, but again I can't be scanned for a while so there is no sense in freaking out for the next few months. This is going on the back burner and I am to call my doctor if the swelling doesn't go down in a few weeks. If it gets any bigger, yes, I may have to dangle a toe in freak out mode.

4.) I said to my doctor "Dr. Fu, the radiation oncologist, mentioned that she does not completely agree with your assessment of my last PET. She claims she still sees a bit of activity and recommended I get another PET after the radiation leaves my body." He seemed perplexed by this and got out my file. We went over my last PET, and read the lengthy report together. He stared and stared at it. He then said "I don't see anything significant, but Dr. Fu is better trained to read these type of scans. If you're open to another test give her a call and get it scheduled."

That wasn't very reassuring. But, as we left the office together he did quietly murmur, "Cathy, sometimes doctors just read into these things." That was a bit more promising.

5.) I got a flu shot! I've learned over these 10 months that a cancer center is very HANDS OFF when it comes to 'regular' medical procedures. They specialize in...cancer! I can't count the times I've been referred to my GP for various side effects and problems. So, I was surprised they offered me a flu shot but was happy to get a little more use out of my $50 copay. Yay! Shoot me up!!

So, once I stop glowing in the dark I will call Dr. Fu in November and ask if she still thinks I need another PET. If she does, which I anticipate will happen, I will schedule the scan at that time. Then January's scan should not be needed. This is fine with Daniel and I because we topped out our insurance quota back in MARCH so as much as we can get in for 2010, the better. We start a whoooolllleeee new bill in January.

Everyone ran their hands through my lustrous hair and told me I was cute as a button. The front desk girls, chemo nurses, financial lady and one radiologist. I told them "I got my eyebrows waxed last week!!" One of the chemo nurses cried when she hugged me. They are such wonderful people and they really make you feel part of a family. I had to get the flu shot in the chemo room (BIG YUCK) and as they were getting it together I suddenly realized- Hey, I don't feel sick!! The sites and smells of that room used to make me hurl, remember? So, at least I'm getting past that.

It was surreal walking in that place after not being there a couple months. My hand was shaking the whole time, oddly. I didn't shake once during treatment! But everyone there made it a great appointment and aside from the phone call to Dr. Fu soon, they hope not to hear or see me until next year. :)

Scanxiety

Full blown scanxiety has set in this weekend. I don't mind being poked, prodded, pinched and put through all the testing again- but having to wait for the results is going to be excruciating.

I know the odds are on my side that it is still gone. 3 out of 4 people stay in remission for 5+ years (That's the definition of a 'survivor' by the way- the 5 year mark. Meaning, a person can stay clean for 5 years, relapse in the 6th year but still be considered a survivor in the statistics. Not good.)

3 out of 4 people. So I'm staying as positive as possible and then I picture 3 people standing in a row with me- and one of is uh.... doesn't make it??

A friend recently directed my attention to an 'inspirational' blog of a man that battled Hodgkin's 4 times in a 10 year time frame. He's written a book on his experience. Glancing through the blog I suddenly realized his wife had JUST updated it to reflect this man's passing and memorial dates/times. The blog is still titled 'this time's the charm.' Ugghhh.

My friend did not realize his wife had updated the site with this information, and she apologized profusely when I asked her how this was inspirational???? It was a rough couple of days.

The odds are on my side. Odds are on my side. God is on my side. God is on my side.

Prayers welcome this week!

Deported

The port removal surgery was this week. I rolled into the surgical unit at 6am (after spending a half hour the previous evening on the phone preregistering) to register AGAIN. They gave me my medical bracelet and allergy bracelet and I put on the fashion forward hospital gown.

I'm allergic to cats. I'm not sure what that had to do with my surgery but they tagged me anyway. I'm told surgical stitches used to be made of CAT GUTS so they just wanted the surgeon alerted.

IV's hooked up, CBC and various blood tests taken. I stopped taking Coumadin three days before this so I wouldn't bleed to death on the table. Eventually I got the sedative and they rolled me down to the dark, gloomy basement. Then they gave me more sedative. I stated my name and birthday 152 times to various staff and told them what I was having done. I didn't want to wake up without a right leg or something worse.

Finally I was taken into the operating room with all the bright lights. It always looks like it's right out of a medical tv show. The room was spinning and they wrapped/tucked my arms underneath me with foam things and I thought I'd fall off the skinny table on which I had just scooched from the rolling medical bed. I told them I was pretty dizzy and one of the six nurses and anesthesiologists said "Haven't you been given sedative yet?" just before I felt a huge RUSH of medication. Apparently they don't like chit chat in the OR.

They put tubes up my nose, rubbed various ointments or disinfectants all over my chest and covered my face with lightweight paper/tissue. I thought- ummm, they didn't do this last time- do they know I'm awake? Every Dateline and 20/20 I've ever seen about people that FELT their entire surgery because they weren't unconscious flashed through my mind. These people were about to slice me open and untwist wires from my vena cava. I certainly didn't want to feel it.

So I talked some more. I thanked everyone for their help with my port and asked if I could keep it. I was told hospitals no longer allow people to keep body parts or implantable devices because they are abused (someone put a gall bladder stone in a soda and made a person sick) so I couldn't take my port. Then they must have administered the Twilight medication; I remember faint voices but woke still on the operating table when they were finished.

No bandages, no mess. Just a glued up chest that feels tight, itchy and uncomfortable. I took the pain medication they gave me for the next day but it makes me sick so I'd rather go through the pain. No showers or baths allowed for a few days but then I'll be back to normal!

Bye bye port. Thanks for everything.

Meeting with my oncologist on October 18th and scans to follow. Love to all- :)

Thought

I've never met another Hodgkin's Lymphoma patient or survivor in person. I want to change that.

You can walk down the street and BUMP into breast cancer survivors. It's breast cancer awareness month now. I see pink everywhere.

I'm ecstatic for that support and that attention to breast cancer.

I'm just saying I would thoroughly enjoy spending time with another Hodgkin's diagnosee/endur-er/hair losing/port wearing/chemo puking/radiation ultra violet glowing/CT, PET, MRI scan vet/nose hair gone so I buy Kleenex in bulk/You're 1 in 25,000 that get this disease and I'm miffed off..... Hodgkin's Lymphoma friend. :)

RSVP's welcome.

That's all.