Cancer is not Glamorous

Cancer is not glamorous. As if I had to tell you. Just so you know this is going to be a whiny complainy post for the most part.

Part of my head is shaved. I haven't figured out how to style my hair so it always looks disheveled. I keep a scarf on my head to try to cover it up - mainly to make myself feel less self-conscious. My friends and family tell me that the scar is not that noticeable. Eric and a few others have told me my scar is huge and I should keep it covered.

I'm also on a steroid regiment to keep the swelling down in my brain. The steroids cause my face to swell. It also gives me a huge appetite. Any weight loss from the honeymoon cruise has been regained and then some. The face swelling and weight gain does not make one feel glamorous to say the least. Steroids also cause massive acne break outs. Cool. I needed that like I need another hole in my head. (Sorry. Couldn't resist)

I haven't done chemo in months now so the cancer is getting worse. I know this because the pain in my right hip is worse. I have a hard time walking. My right knee hurts. Left arm really hurts. I have throbbing pain in my right upper rib. Goes without saying, but my head and neck really hurt. I'm officially an old lady because getting myself dressed takes a lot of effort. My brother and sister have been known to help me at times. Sitting for too long (meaning more than 10 minutes) is difficult with my bad hip.

Sleeping is difficult. I can't lay on my left side because that's where my scar is. I have a limited range of motion in my neck and it's much much more comfy to lay on my right side. That irritates my hip and knee. My arm and side throbs regardless of what side I lay on. So my solution is: pain pills! Annoyingly, because of the brain surgery, the doctors took away most of my meds. I'm limited to really strong narcotics or nothing. No aspirin, tylenol etc. If you've been keeping up with my other blogs, you would know I hate feeling over medicated and that's exactly what happens with the meds I'm on now. It's a balance between pain and being zonked.

Also, the chronic pain kinda makes me a cranky b. I can't do a whole lot and I'm just a lump most of the time. I'm just cranky and rude sometimes. I'm not myself and I don't like it. I'm really worried about my momma. She's still obstructed. For those of you counting we're 2 months plus without eating. The IV feedings are getting old and she misses herself.

That's the worst part about cancer. You no longer feel like yourself. Like that got taken away from you. That your life is not your own an it's all going in a direction you don't want to go in, but you have little choice in the matter so you follow the only road in front of you slowly, deliberately and with much effort.

We have been very blessed to have lots of support along the road we travel. That we expected to dwindle, but it's grown and grown. It's a small miracle in itself. 
 
Ok so onto more positive news. I'm tired of complaining:

- Tuesday I go to Georgetown Hospital to start the radiation process. They're doing a CT Scan and a radiation simulation. Honestly,I don't know much about radiation- how or why it works. I have lots of questions for the doctors.
- Eric was able to come visit for the whole weekend. That made me happy. I can't go to NYC in my current state so him coming here was very nice.
-My sister is visiting for a whole 3 weeks! It's awesome and just nice to have her kids around. We celebrated my nephew's 3rd birthday today - complete with pool party and Spiderman cake. I think I ate more cake than he did. Actually, I'm pretty sure of that fact. It was a great day. I was in excruciating pain, but fought through it to hang out with the people I love and be part of the festivities. (One of the nice part about Lisa being here is that it takes some of the burden off of Jacob, who does so much for my mom and I that I'm not really sure how he hasn't popped yet.)

- I found an even better clinical trial at Georgetown so I'm happy about that. So the plan is radiation on my head for 2 weeks, palliative radiation on my hip maybe, then 6 more weeks of chemo.

Sporting a new fade (hair do)

Brain sugery went as well as can be expected I guess. The surgery was scheduled for 11am- meaning I had to be there at 9am. I've never been in pro-op that ran so smoothly. I was in a bed, in a hospital gown, with an IV by 9:45. Granted that I didn't get wheeled off to surgery until 11:45. All in all though, the pre-op went pretty well. They even gave me some minor drugs to a calm my nerves. I cried a little, wrote notes to my mom and husband, and cried some more. Poor Jacob got stuck lugging my stuff around.

Surgery, thankfully, was unrememberable. They give me enough drugs that I don't remember anything - not that I would want any of those memories. I always tell my surgeons and anesthetist that if they bring back any repressed surgery memories that I'm going to be a very unhappy camper. I woke up from surgery and three thing happened: I was very thirsty for ice chips, I was in a lot of pain and I was very happy to see Eric.

My head was all bandaged up so I couldn't hear; I couldn't even put on my glasses or contacts. Ice chips were a God send. Eric was really helpful and I was really happy he was there. He stayed the whole first night with me. I had to go take an MRI that night. You have to lay still on your back. It hurt lots, but they gave me lots of drugs to help me sleep. It was ok at best: loud machine, excruciating back pain from bone lesions in my shoulders, but I survived that with some minor tears.

 My roommate in the ICU was awful. She refused to keep her clothes on, screamed all the time and couldn't remember anything (like her name, the year, or who was president.) The nurses wake you up every hour for neurological checks. So every time they woke her up, she pooped the bed and screamed bloody murder. It made sleeping really difficult.

Ok so as for the results!! my neurosurgeon felt like he was able to get the majority of the tumor (he didn't want to take out healthy cells) so radiation should clean up the rest of the tumor. I also have 3 other smaller masses that they will obliterate with gamma knife radiation (gamma knife radiation is just a fancy way to say targeted radiation). That radiation starts in a few weeks when my wound heals. So all in all it should be about 2 to 3 weeks following surgery for radiation.

 My goal for the next few weeks is to get all the blood that's been matted into my hair out. Half of my head is shaved. New do for me! I should be able to cover everything up with good hair styling. It's not pretty but it's not as bad as it could be. I have a new bad hair cut, but this is not my biggest problem. I've got the biggest appetite lately because of the meds - also not my biggest problem. Very minor balance and typing is problematic so I'm going to sign off now.

Hugs and love,
Patti

Operation: I love you man

I've got a new plan that I just wanted to warn you all about.

Life's too short not to say I love you when you mean it - be it to friends, family, pets, and even that dessert from Houlihan's and that was really good today. So if it's awkward when I say I love you to you, just suck it up and deal, but you need to know.

I love you and I'm not afraid to say it more often and more frequently.

You've also been warned for upcoming Operation: Hug a little longer

(Scary Title Warning): I have Brain Cancer

Apparently I'm a bad blogger? Anyone surprised? No. Good. Moving on. Lots to catch up on:

Weekend of April 7th: best weekend of my life. I got married to a great guy. The day was, in a word, perfect. Family, friends, weather, hair, dress, health, flowers, food, dessert, everything: perfect. I couldn't have been happier if I had planned it. Oh wait I did plan it.  Scratch that.

My mom even made it to the wedding. It was a big effort on her part and I'm so happy she pushed through the pain to be there with me. It just wouldn't have been the same without her we all knew that.

Ok Monday April 9th: honeymoon in the galapagos. Pretty close to perfect. I had some pain here and there and some problems snorkeling later in the week. Truth be told, Eric had some problems snorkeling too so I'm not ready to blame cancer just yet. We made some new friends and I'm proud to say I only cried a little bit when we said good bye at the ghetto Galapagos airport.

Photos:
Wedding photos from the professional here:

Professional Photos from wedding by David Jones

Jessica Banov took one of my favorite photo collections of the day, which can be found here:
Kodak gallery of wedding photos
And Eric and I will spare you the 3000 photos we took on the honeymoon and just give you the highlights from our 3 hour cruise (just kidding it was 10 days):
Eric & Patti's photos from the Galapagos


Ok now to the not so great news:
April 30th: NIH trial. My sister came back for it. Awesome help. Day one was a lot of information about the trial, which turns out felt like it was going to be an ordeal and have minimal success rate. There was more cancer than before in my lungs - not a huge shock because I hadn't been on treatment for a month, but still not great news.

Day two, I woke up with a massive headache and even more anxiety. With much tears and prodding from my family, I got my first dose of new chemo and the trial chemo which came in pill form. Tuesday night: Lisa left (boo) and my headache got worse. High fever and nausea. After more prodding from the family, it was back up to NIH. This time two days of testing resulted in even less good news:

I have brain cancer, or brain metastasis or whatever they're calling it. 4 lesions. 3 small and treatable with radiation. One larger (3.2 by 2.9 cm - think ping pong ball size) that will have to be treated by surgery. NIH doesn't do radiation. So they kicked me out of the study. Will now be pursuing treatment at Georgetown Hospital. I've gotten a pretty good vibe from my doctors there - one oncologist, one radiologist, and one neurologist. Two of which are a little Doogie Howser, but have been very knowledgeable and have been  reassuring. I trust them.

Without going into much detail here, because I don't have the time or brain capacity apparently, I should be ok. Side effects should be minimal - to quote the doctor less than 7% chance. Surgery is scheduled for Monday the 14th at 11am. All goes well I'll be out of the hospital by Friday. Radiation following healing about 2 to 3 weeks after that. 3 to 8 doses of radiation for a few weeks then back on chemo. I'll be in NY this upcoming weekend so all your New Yorkers get your visits in early.

My thank you cards aren't done from the wedding yet. (Actually, they're barely started. This isn't how I planned to start my new married life. FYI) I just wanted to say thank you to everyone who's made me as strong as I am today. Thank you to everyone who celebrated near and far with us. Thank you to my family for carrying me through when I'm not strong enough. Thank you to my wonderful husband who didn't even flinch when I said I'd have a 4 to 6 inch scar on my head. Thank you for reading and listening. Thank you for being a part of my journey. The journey's not done yet, so don't stop reading, but just wanted to get that out of the way.

Hugs & Love,
Patti

P.S Rachel, I still miss you.

Seriously a Strong Woman

You may not know it, but the community has suffered a big loss. I had to say good-bye to a friend today. I met Rachel as hospital roommates at Fairfax Hospital. I'm not one to make life time friends overnight, but I think that's pretty much what happened with Rachel and I. Rachel had cervical cancer, very aggressive cervical cancer. I heard as the doctors told her it spread to her lungs while she was on treatment. Difficult news, and difficult to know what to say to a stranger. We traded emails and phone numbers, and I think my mom may have scared them when she actually did stay in touch and join them in a women's cancer walk. Not knowing anyone at the walk, my mother was worried she wouldn't have anyone to talk to, but Rachel's family was so welcoming that my mom had a great day

From there, Rachel and I formed a strong cancer bond. We talked often about what was going on with each other's cancers. I would ask Rachel what was going on with her and after a few minutes of cancer complaining she would always say "ok enough about me! How are you feeling?" (sometimes the conversations worked in reverse. I would complain, then ask how she was). It was an odd friendship because we knew intimate medical details about each other's life - I'd ask how her white count was doing - but I didn't know much about her personal life. So we worked backwards to learn about each other outside of cancer. 

I watched as Rachel's husband and sister took amazing care of her. Anything to make Rachel happy or to make her life easier. It made me realize that my siblings and parents do that for me. I just couldn't see it or appreciate my family until I watched Rachel's family magnanimously take care of her. Rachel wouldn't have survived as long as she did without their loving support. I wouldn't survive without my friends and family. I know that now. We would often sit and marvel at how being sick can bring out the best in people, how we both felt so loved. Her family (and my family) should have no regrets, no doubts and no reservations about the care they provided. They did everything they possibly could for Rachel. She and I both agreed that we fight cancer because we love our families so much. We battle and take the chemo, radiation, medication, humiliation because we have to fight for our family and loved ones.  

Rachel wanted to write notes to her family to tell them how much they all mean to her. I don't know if she ever finished them, but I do know this: A. She was a perfectionist so the letters had to be just right. and B. There's no way to make them perfect or to say everything. How could one letter express a lifetime of love and joy that you share with your sister? It couldn't. (Just like one blog post isn't enough to explain how much Rachel helped me become a better person in the short time we knew each other). I told Rachel that at the end of the day, there was nothing she could write in a letter that her family didn't already know about how she felt. I think that helped because she was able to take a nap. :)

Rachel was truly loved by so many people. Her get well and sympathy card collection rivaled my own (and I had a 2 year head start). She proudly displayed all her cards in her kitchen - leaving little counter space. When you're sick you get so many cards, gifts packages, emails, facebook messages, texts, and phone calls that it's near impossible to respond to them all. But trust me when I say, from personal experience, that she read everything and all of the notes and messages combined into a big hug - a feeling of support and love - so even if you didn't get a response from her (or a response from me for my friends and family) know that the messages are still very important. 

I often joked that Rachel was my zen master. When I was confused/scared/upset, she could provide prospective in a single sentence that would make me feel better and more balanced. She taught me to stop second guessing myself (I'm still working on that one, Rachel). She told me it's ok to have an "OPP", an occasional pity party. We laughed often about "living life to the fullest" as doctors would recommend - we really tried to get out there and have adventures on good days. (adventures in this case means a visiting a pig farm or getting much needed pedicures). On bad days though, we redefined living life the fullest as fuzzy socks and long naps.

Rachel was one of my examples of handling adversity with dignity and class. (see previous blog on the subject). It's really hard to smile when you want to break down and cry, take deep breathes instead of throwing things in a hospital room, and hold your head up high when the doctor is giving you bad news over and over again. But Rachel did that and it took real courage. 

Rachel and I had many deep conversations about relationships. She pointed out that no matter how long or short your life is, you only have time for value-added friends. People who will enrich your life should be treasured and those friendships nurtured. Her and her family has certainly been value-add to my life. Even in death, Rachel was still a planner. She knew I didn't have anything blue for my wedding. So at her request, her family is letting me borrow a gorgeous blue sapphire ring to wear on the wedding day -  to be returned a later cancer free date. So you can see it at my wedding! I'll proudly be wearing it as my something borrowed and something blue. It's so perfect and thoughtful,  it makes me tear up when I think about it. That's what kind of person Rachel was.

So thank you Rachel, for being my zen master and making me a fighter. This isn't fair and you didn't deserve any of this. I'm really going to miss you. 

Rachel's blog: http://rachelbg99.wordpress.com/ (I've said it before and I'll say it again: she's a way better writer than I am)

Dignity Is Always En Vogue

Sometimes life isn't about the things that happen to you; it's about how you handle them.

There's something to be said for handling bad news and tragedy with dignity and strength. That message has been repeatedly shown to me over the last few days - through both friends and strangers. If you need examples of strength in adversity, let me know. I have some very amazing and inspiring people to point you to who smile in the face of tragedy and celebrate life despite loss and grieving.

It's not easy fighting every day. Some people, though, don't get the chance to fight. They're gone in an instant. I'm blessed that both my mom and I have had the opportunity, strength, and support needed to fight. I try (emphasis on try) to live life each day to the best of my ability - rest when needed (often), eat horribly bad food for me, laugh, love, cry, and take every hug I can get. It takes a lot of energy to stay motivated and positive; it's an effort worth making though. Don't think I don't have depressed moments - given my last post I obviously do - but with the love and support of Eric, my parents, my siblings, my family, my friends, I continue.

We don't get to choose the bad cards we are dealt, but we do get to pick how to play them. Dignity is one of the many things that no one (or no disease) can ever take from you. Classiness never goes out of style.

Nobody Fights Alone

Cancer makes you feel very alone sometimes. I'm disconnected from my friends and coworkers. I have this new weird schedule that revolves around doctor's appointments, chemo, and picking up prescriptions. When I get depressed I feel pretty alone. It's the worst at night. Both my mom and I have experienced pretty bad insomnia. Awake, alone, with our pain and all our thoughts about cancer, life, death, and weddings. It's alarming to say the least.

While my family and friends are amazing and amazingly supportive, in my bad moments I feel alone. It feels like no one understands what it's like to be almost 30 years young, fighting for my life, putting some dreams on hold, and living with chronic pain.*

So here's what I've found helps, in no particular order:

• Take medication
• Call my sister
• Plan my wedding
• Take more medication
• Commiserate with my mom
• Play buck hunter with Jacob.
• Re-read the 100s of fb messages and cards I've gotten from my wonderful friends
• Text Rachel
• Take medication
• Listen to rap music on youtube

For Christmas, my brother got me and my mother cancer bracelets - the rubber ones that are colored for each cancer. Teal is the ovarian cancer color; royal blue is the colon cancer color. They say "no one fights alone!" on them. He gave us 50 each for us to give out to our supporters. We gave out all 100 in less than a week and had to order more! I don't expect people to wear them all the time (especially my more fashionable friends as blue/teal doesn't go with every outfit). It's just nice to know how many people are out the rooting for us. It's our own little tracking device. Our diehard supporters wear their bracelets everyday and I appreciate that.

I'll put my cancer fighting bracelets on when I feel alone. That way when I feel lonely I can remind myself that I'm connected to our family and friends who love and support me. It reminds me that no one fights alone. No one is alone, even if it feels that way sometime. We're all in this struggle called life together.



In unrelated news, this week was my mom's birthday! It also marks the one year anniversary of her being diagnosed with ovarian cancer. Sufficient to say last year's birthday sucked and this hasn't been the most fun year. However, we're thankful to still have her with us and we're all hopefully about the vaccine she's receiving from the Cancer Treatment Centers of America.

One thing I've been struck by lately is that there is a lot of suffering and tragedy in the world. Things can change in an instant. Not to be too much of a downer, (you are reading a cancer blog though), but people can die suddenly from heart attacks, car crashes, bear attacks, you name it. I guess what I'm trying to say, very uneloquently, is that I'm thankful for the time that I've had over the last year with my family - even if it hasn't been the greatest at times. I'm still thankful that we still have each other. Yeah we've had bad days, but we've also laughed a lot, mostly at each other. It's humbling to think that even through this cancer treatment, we still are very blessed to be together. There are greater tragedies in the world than ours, for sure.

In the end, no one fights alone. Some just have bracelets to prove it.


*As I write this,  I know one person reading knows exactly what this feels like - and I hope she had a good week visiting with her sister :)