2011

I know it's been months since I posted. Frankly I'm kind of sick of talking about myself!

Treatment has been done for a few months, so I try to keep my mind of cancer, relapse and statistics on the whole matter.

I'm thankful for each dear friend and family member, and pray everyone had a wonderful Christmas and New Year!

Noah has transitioned from a toddler into a little boy. It is heart warming but sad at the same time! Kenzie is a teenager, and Kayla starts middle school next year!

Appointments and scans next week. I'll keep you posted. :)

Prayers welcome!



Cathy

Cake and more cake

Daniel turned the big 3-9, then one week later Kenzie turns 13. We'll officially have a teenager in the house!

Stuffing our faces with Daniel's Cherry Chip cake. How many of my blog posts have revolved around cake?

Scan update

I finally worked up the nerve to call the cancer center and speak to the radiation team. I let them know that Dr. Fu, my radiation oncoclogist, wasn't convinced my PET was clear and had recommended another scan once the radiation left my body.

She was out of the office and my call was returned the next day. The nurse advised that Dr. Fu spoke to my main oncologist (that oversees all my care) and he stated I was under his care and he did not want me scanned until January. So there we have it!

I'm not thrilled that a qualified physician sees something on my scan, and I have to live with the 'what if's' through the holidays. But I have faith in my main oncologist and my husband and I basically think he just wants to give me a break!

So, unless I feel nodes popping up I won't be in contact with my medical team until my January appointment. :)

Delay

We've been passing around the same cold for a while now. I'm sorry I haven't been online for a while.

We're doing well and enjoying fall. Kenzie turns THIRTEEN this month and we just can't believe it. I met her when she was six and Kayla was four. Daniel turns the big 39 this month as well.

We invested in a few new Wii games and have been having a blast. Guilty Party is our favorite...it's kind of the Wii version of Clue.

Soon we are having professional pictures taken outdoors in St. Charles. I'm so excited about it--- the textures and colors of the outdoors, the wardrobe change we're allowed, coordinating the five of us but not being too 'matchy' ... trying to manage my short, unruly hair.... I'm ecstatic, honestly!

I've seen the photographer's work and am so excited to have ours done! I'd like to have a marker that at the end of this crappy year, WE MADE IT and this is what we look like!! :)

I'm a total dork. You can be sure I'll post them when we get them. I'm buying some sequin-ey sparkly headbands for the occasion!

Humbled by those with Hodgkin's and refractory Hodgkin's that have come before me and I've had the honor of getting to know. Extreme sadness this week in friend's I've become close with and lost to this stupid cancer in recent weeks. The word REMISSION is worth more than gold and I'm thankful I've heard it. Continued prayers it stays that way.

Love to all--

Cathy

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.

Port Removal Didn't Happen

Well, the surgery got postponed. The only opening was late Thursday afternoon and we gave it a shot, but with two children getting out of school and needing pick ups at that hour it just didn't work out. I am rescheduled for this week and will keep you posted!

Enjoying the fall weather. Yesterday we had on air conditioning. Today I'm in a sweatshirt and jeans. That's Missouri!

More soon!

Port Removal

I FINALLY scheduled the port removal. I've been wanting to get it out but things have gotten hectic and I just didn't take the time to schedule the surgery.

I go in Thursday afternoon! I will not be sad parting with this thing. From what I hear they give you the port if you want it. Maybe I can decorate mine and turn it into a Christmas ornament or something. Nah, I don't think so.

Adjusting to life as a cancer survivor. The whole experience is pretty surreal some days. We are all doing great and thank everyone for their prayers. :)

I can wear a headband!!!!

Ok, I'm reaching here.

But I can finally (somewhat) put my hair back (because it's so long and lustrous) with a headband!



And my eyebrows have needed a good waxing for months now. I just haven't done it yet because I'm so thrilled to have hair back on my face. Odd, I know. Who wants a hairy face??

Love to all!

Cathy

Stand Up To Cancer

Stand Up To Cancer is tonight on every major network!

My friend Alyson participated in "46 Mommas Shave for the Brave" this week in Los Angeles. Her son was diagnosed with Hodgkin's Lymphoma and these moms shaved their heads in support of their children.

Before



After



They will be at Stand Up to Cancer tonight- I believe at the very beginning of the show!

Have a great weekend everyone. :)

Put a Ring on it

This weekend Daniel's sister Sara was married! We took a whirlwind trip out of town. The ceremony was on a beautiful golf course and the weather could not have been more perfect.

Noah kissing the beautiful bride



Grandma Holly



Our girls- so grown up doing guest book and favors!



Mother of the bride, and Daniel! Resemblance... nah!! :)



Sara



The kids had SO much fun. We had to leave (3 hour drive) shortly after the music started but Noah got to boogie down for a bit. Apparently he was the life of the party..dancing around, raising his hands to the roof and screaming "Shake your booty" over and over.

Time to get the garter, but Noah refuses to stop partying.



Getting his groove on before the music even started



A beautiful ceremony, reception and day! Congratulations Sara and Travis.

Firetruck Big Boy Bed

While out to get something completely different I stumbled upon an awesome big boy bed for only $30. We moved my Jeep's seats as far forward as they would go, loaded the bed within an inch of it's life and I drove home with my knees shoved up into my chin.







No worries about him falling out, like with some toddler beds. His crib mattress fits right in it, and he should get at least a few years of use out of it!

The bed is hiding in the garage. We're not showing it to Noah until we have everything put together. We've ordered this bedding and wall decals.



I can't believe he's about to get a big boy room! I'm enjoying the last week or so of him in the crib before he's free to get up and down and wander all around on his own. Yikes.

Feeling good and keeping busy! Love to all-

Weekend

Noah is finally big enough to join our 'homemade pizza Friday nights!'



All three kids smiling at once. This picture is a keeper!



Hope everyone is doing well. We had a great anniversary weekend!

August 13, 2010

From January to August and I've finally arrived. I thought I'd get out of today's treatment and sneak to my car. The radiation team pulled me into their little 'behind the curtain/Wizard of Oz' area, lined up to hug me and gave me this.



Sorry for the picture quality, I had to rig the flash so the words are readable. Signed by the radiation oncologist and all the technicians.

I drove off that parking lot for the last time until October. Well, I'm supposed to see the pesky radiation oncologist in a few weeks for follow up, but let's just say October.

Friday the 13th and our anniversary weekend. Bring on the party! Well, Totino's pizzas, M&M's and Diet Coke. That's a party in our house!

Love to all-

The pesky radiation oncologist

I see her every Monday. She yells at me for my tan. Literally. Yells. She tells me to put on 50 SPF just to get in my car and drive to the grocery store. FINE.... I know she's right.

I had a cancerous basal cell removed from my FACE a couple years ago with an inch long scar on my cheek to prove it. So, I should know by now how scary skin cancer can be. Goodbye forever, tan lines. (P.S. Get those moles checked people!)

But this week she said...an exact quote..."I don't agree with your oncologist's opinion of your scan. I think radiation will 'get it' but we'll need to do another PET in about 3 months when the treatment finally starts leaving your body."

UMMMMM WHAT? Did you just tell me you still see cancer? I was too shocked to ask many questions, but that is what she was saying.

I don't know if she's just pickier than my other medical staff, or if she's right. In the last 8 months I've learned to tolerate and expect varying opinions. But, I don't know who to believe. My oncologist and the people that read PET scans listed me with the 'remarkable regression' I was so proud of. Then this chic comes along and tells me she doesn't agree and we need to check it again.

Uggghh. It's a bit of a roller coaster. So, this week has been kind of a downer. Daniel and I are walking around in a daze not knowing what to think.

IS IT GONE OR NOT PEOPLE????

I was sooo looking forward to having my port removed. I knew I'd have CT scans every three months but figured I'd just tolerate all the contrast dye and needles in my arm. If they're talking about even more testing I might as well keep it in. Which means.... continued Coumadin/Warfarin to thin my blood since my body is lashing out at the foreign object. Puke.

I have plenty of time to ask questions and right now I just want to finish radiation. My last treatment is Friday on our anniversary is this weekend. You can bet we'll go out this weekend to celebrate. It would be nice to know for sure that I'm clean so I'll try to beat an explanation out of her before Friday.....with SPF 100 in my hand to get on her good side.

Thanks for all the wonderful comments and support! :)

Sunday

Sunday afternoon at our house



Hope everyone's weekend has been great. One more week... 5 more rads!

Applesauce... my BFF

Breakfast




Lunch



Dinner. Notice the festive flair of fruit that I allow myself (choke down) in the evening.


Radiation throat pain really stinks. But, it's still better than all the side effects from chemo!

7 more to go! Have a good night everyone! :)


He regularly grabs his sisters..plants them on either cheek and screams MWAAAHH!!!

Rads

Radiation is going well- 8 down so 9 more to go! This weekend my throat really started hurting and unfortunately it is difficult to eat.

Apparently after radiation on Mondays I'll be meeting with the radiation oncologist. We hit the pool this weekend, I got some sun and the woman totally flipped out on me today. She confirmed that I shouldn't be more susceptible to skin cancer now but kept screaming "Why would you want to risk melanoma???" over and over. I told a friend...it felt like I'd been sent to the principals office!

So, from now on I guess I'll up my sunscreen applications. I see her point...but goodness. She gave me a prescription for a benadryl/nystatin/acid remover concoction that I syringe down my throat every two hours. It's similar to the nasty stuff I had to take for all the mouth sores- but at least I'm bypassing my tongue. The throat pain will last through radiation and probably just a few weeks after.

I hope everyone had a great weekend!