A Post...can you believe it?

Ahhhhh, feeling much better. The "make ya feel better" meds have kicked in and I'm wearing a pain patch to help with the post surgery/detox headaches. And lastly, I have a wonderful RX that makes me sleep like a baby. It doesn't sound like it, but yes, I'm still doing my detox and taking some holistic supplements. Eventually, I will be off the "hard" stuff, but I had to pick my battles and not try to concur them all at once, because it was driving me and everyone around me crazy.

I know I'm feeling better when the retail therapy bug hits me. I've been shopping on-line for two days.......Halloween costumes, kids fall clothes, bedding etc.

I have a lot of hard speech therapy ahead of me, but my spirits are up and I'm functioning again....hallelujah!

Here are some Tropical Storm Fay pictures and a little visitor we had at the back steps for a few days.

A Litlte Progress

A week later and the depression, anxiety attacks and sleeplessness still linger. Jake took me to our family MD (who is very informed of my history and my desire to stay as natural as possible). The natural practitioner and the MD agreed it would be wise to put me back on a RX for depression and anxiety. I'm still waiting for it to kick in. I did sleep the entire night last night plus until 5pm today. He (the MD) also refilled my hyrocodone for pain. Jake has it hidden from me so I don't over do it. It's good stuff.

I'm pausing for a few days on some of the natural meds until I can get my emotional state in order. Three cancers has just kicked my ass. I'm not the strong, get up and go gal of the past. I'm tired and sad. There's no play book for this so I'm muddling through the best I can. I'm trying to ignite that fire in my belly to fight and get through this.

Keep up the positive thoughts they really help.

Pity Post

Every time cancer has slipped into my life I've battled a short period of depression then picked myself back up, done what I needed to do and moved on. This time I've sunk into a depression I can't seem to find my way out of. I can hardly care for the kids. My mom, Jake's mom and Jake have been so supportive and understanding I don't know what I would do without them. They let me cry, complain and stay awake with me at night when the demons come out and don't let me sleep.

The countless narcotics allowed me to escape for months, but now I'm on my own and I'm struggling. If you called, thank you. I'm sorry I haven't called back. When I'm like this the only way I can cope is to withdrawal. I'll surface with this is all behind me. I hope it's soon.

Decision, School and Looking Good

Decision made...no radiation. I guess I knew all along what my decision was I just had to go through the motions of letting the decision settle in. I'm very happy with this choice. I may add a link about some of the "stuff" I'm doing to maintain my health later.

We had "open house" at Nathan's school tonight. Since he is in a combined 1st and 2nd grade class (37 students) there are two teachers and they are so cool. He's going to love the next 2 years!

During registration this morning the guidance counselor came running over to me. I don't think I blogged about this back in May, but I had a routine followup meeting with the school's speech pathologist, occupational therapist and guidance counselor (whom I had never met before) to discuss Nathan's progress. To make a long story short, I basically broke down and cried my eyes out about the tongue thing because I felt so bad that Nathan has had to witness and deal with my health issues essentially since he was born and I knew it was affecting him. They must have spent 30 minutes talking to me and assuring me everything would be ok and they would keep an eye on Nathan. When Ms. D (guidance counselor) came running up to me she gave me a great big hug and asked how things went with the surgery. Then she winked and asked what class Nathan got into. When I said he got into the MAP class she said, "I know, there are just certain people we take special care of". It is suppose to be a lottery so it was so sweet of them to "break the rules" a bit for us.

I got a lot of compliments today from people I haven't seen all summer. I have to say, aside from some swelling under my chin I'm looking good. I've lost about 25 pounds with the surgery and diet change and now weigh what I weighed when I was 20! That's a size 6 folks! I do need to work out and tone up, but over all it feels good to be "thin". Now, if I can just physically start to feel better all will be good in the world.

Thursday

This week I met with another radiologist to discuss treatment options. He did present us with an alternative to traditional external radiation (like I've had before), Brachytherapy (Internal Radiation Therapy). It would require me spending at least 5 days in isolation in a NY hospital with "rods" inserted from under my chin into my tongue and looped back down to my chin. Radiation would be "implanted" directly into my tongue. The plus is that it limits the amount of radiation to external structures (salivary glands, thyroid etc.) that could be negatively affected by the radiation. As you can imagine, neither option sits well with me.

I also met with the natural medicine clinic and was presented with another alternative, a combination of diet changes and supplements. It would be based on the Gerson Therapy. It would be a pretty dramatic diet commitment, but since I'm not in a terminal situation I should be able to incorporate the program in moderation. I just have to figure out what that moderation is. I'm strongly leaning in this direction, but still have more thinking and reading to do. I'm also going to add Reiki, acupuncture, meditation, and the teachings of Abraham/The Secret to the nutritional changes. It's all so overwhelming! So much to take in and consider.

On a completely different note, we found out Nathan got into the MAP (Multi Age Program) for 1st and 2nd grade. He'll be in this class for the next two years and we are so excited. We applied at the end of last year for the lottery and just got word this week. We have already found out that 4 of his closest friends will be in the class too. He should have no problem adjusting this year. I have heard nothing but wonderful things about this class and am looking forward to him being a part of it.

Off to get ready for my Reiki session. Think happy healing and decision making for me.

Therapy Session

A bomb was dropped on Jake and I last Friday when we went to the doctor for a simple check-up....the tissue removed when I had surgery indeed had cancer in it.......enough they are recommending I consider more chemo and radiation. They got clear margins, but just can't be sure I'm safe from it coming back. And why the hell they didn't mention this before now I have no idea.

My immediate response, "No, I won't do it". And I looked the doctor right in the eyes and said just that. The risks and side effects from radiation to the same area twice can be awful and long-term. A risk I don't think I'm willing to take. If it didn't work the first time who's to say it will work this time? Fortunately, he fully understood my point and understood if I chose not to do it.

Ironically, I had been to see a nutritionist/holistic practitioner the day before. Jake and I talked a lot about taking a "natural" approach instead of the toxic radiation and chemo. Thanks to my mom and his mom's love, knowledge and belief in the mind/body/spirit approach to healing, this was not a far fetch idea for us to consider. We talked to both of them as soon as we got home and they were very supportive.

I spoke to Jennifer P. and Stephanie yesterday, both have had radiation to the face/neck and chemo and both agreed they too would not do radiation again. It was like a breath of fresh air to talk to two people who knew exactly what I would be facing and to support my idea of a different way to health. Now, I just have to be 100% sure it's the right choice for me.

I'm tired, not just physically tired, but emotionally tired from this repeated "cancer theme" I've had in my life these last 6 years. I'm exhausted. I feel beaten and bloody yet determined to fight my way out of this.

Jake said he was going to blog about all of this and I said no. I didn't want anyone to know what was happening. I'm sick of blogging about being sick and putting all my dirty laundry out there for everyone to see. However, this morning, I decided it might be therapeutic.....so I'm here. Thanks for the therapy session.

Check Up

I'm feeling more human as I got my stomach feeding tube out this morning. It hurt like hell and really freaked me out. My neck and tongue are healing good and I have about one more week of the bandages. I asked for more of the wonderful pain meds, but they down graded me to something less addictive, so no more happy good night medicinal cocktails. Poo. The swelling is going down, but the doctor said it could take another month or two to completely go away. Another Poo. My body is thin, but my face is fat...not attractive.

Wednesday Catch Up

The recovery is coming along, a bit slower than I'd like. Unfortunately, since I had radiation 3 years ago the healing is slower than if I hadn't had radiation. I still have quite a bit of swelling that is bothering me. I'll be glad when I can see my jaw line again! I've been taking care of the house and kids without extra help this week and that feels good. I usually crash right after dinner and let Jake man the fort from there. Chewing is still a challenge and the blender has become my good friend. I look forward to biting into a nice hamburger soon!

Nathan update: Nathan lost tooth #3 while I was in the hospital. When Jake told me, I cried. I hated that I was missing it and the visit from the tooth fairy. He lost tooth #4 soon after I got home and it was nice to celebrate with him. The tooth fell out as he jump into the pool and Jake had to dive for it. Thank goodness we have a black bottom pool so it was easy to find.

He had his first ever sleepover last Friday night for a birthday party. We were shocked when we woke up Saturday morning and hadn't gotten a call in the night to pick him up. When we did go get him he didn't want to leave. Now he tells us he wants to have a sleepover birthday party too.

Reese update: Reese is off to summer camp each morning this week. He is having a blast and looks forward to it each day. I think he was having some cabin fever because he's been so much more pleasant since starting camp. We are still struggling a bit with getting him to wear a shirt at home and when he does he insists it be tucked in. I'm picking my battles and have let him tuck it in although I really don't like the way it looks....he even has to tuck in his pajama top! I look forward to when this picky wardrobe phase ends.

Both boys are suddenly into Star Wars. Jake rented 1 and 2 and they watched them both over our rainy weekend. We pulled out some of Jake's old toys and there were quite a few Star Wars toys that they have been enjoying. The great thing is that they have spent hour upon hour playing "Star Wars" together. It is so cute to watch them.

A Short Post

Hi All, it's me, Hope. I'm sure Jake will continue to post for awhile, but I just wanted to pop in and say Hi and thanks for all the well wishes. I'm so HAPPY to be home. I'd be even happier if I NEVER saw the inside of a hospital again! It was truly a nightmare. I'm feeling much better today, even washed the dog and did a load of laundry! Oh, the wonderful feeling of doing normal stuff. My neck is still a bit swollen and stiff and I'm not eating yet, but hopefully in a couple of weeks that will change back to normal too. Strangely, I haven't missed food, but I'm sure when I can eat I'm going to dig into some guilt free chips, chocolate and pasta!

Mere, had a dream you owned a really cool stationary store.......oh the dreams I had while medicated! At least that one made sense! Sorry for the choppy post, still feeling a little out of it. More later.

Hi YA'LL

It's me, the real Hope back at blogging and connected to the world. Jake just sat down and read me all his post and comments. From what I can remember he was right. I'm in dire need of a shower, hopefully that will come in a day or so, better head movement, some teeth brushing and some food! I did sneak off and shave my legs this morning. It wasn't really the potty break I needed. I need a major hair removal job and I was determined to get it done! A moment of vanity.

The doctor just came in and I'm talking! He asked me to cover my trachea and it worked! He switched it out again and now it's just cap and that will likely come out before I leave. I can manage a feeding tube in my nose, but the trachea thing is freaky!

I have some weird dreams I'll have to share, but have to save up some energy! Kisses and love to everyone including my two sweet boys.

Signing Off For A Bit

Tomorrow's the big day. I'm nervous, but looking forward to getting it over with. We have to be at the hospital at 5:15am, off to the OR by 7:15, surgery should start by 8:30 and I should be done by 5pm. From there, I sleep and sleep and sleep.

I spoke to Stephanie again last night. She's right in the middle of radiation and chemo and feeling like crap. She said the surgery was very easy compared to how she feels now. That's exactly what I thought last time so I'm hoping I agree with her this go round. She said they had her on so many meds that when she did wake up (they kept her in a coma for a week) she felt great. Her speech is perfect and she gives me hope.

Jake may keep my blog up while I'm out so be looking for him. He's a much better writer than I am so I hope you're not too sad when I'm back on-line. I'm sure he'll be entertaining!

Off to eat lots of fattening foods before my medically induced fast.

Today and Tomorrow

Today, Jake and I were back over in Tampa for some more pre-op work. After my appointment we decided to walk over to Dr. A's office (about a block away from where we were) and see if we could meet with a nurse or P.A. to answer some additional questions we had. As we approached the back door of the building and entered, guess who was coming right at us? Dr. A. I have to say this must have been Devinne intervention because this is a HUGE medical complex with thousands of employees. What are the odds? We stopped to talk with him and he said he would be happy to speak with us and to meet him down in his office. Five minutes later we were in a conference room and he spent at least 20 minutes going over things with us. At my original appointment he had mentioned a 20 year old girl who had recently had the same surgery I'm about to have and had recovered beautifully. I asked if he would pass on my number to her because I thought it would be helpful to speak to someone who had gone through the surgery. By the time we arrived back home, Dr. A and Stephanie (the 20 year old) had both left messages.

I called Stephanie back and we had a nice conversation. She speaks beautifully. She has just started the same chemo and radiation I did three years ago so I answered her questions about that and she answered mine about he surgery. It's all still scary, but I feel so much better now.

******

Tomorrow my little Kindergartner turns into a 1st grader!

*****

After celebrating Kindergarten graduation I'll be glued to the TV, watching the final Democratic Primary results. GO OBAMA!

Helluv A Surgery

Before the Dr. scared the sh** out of us.

I have tongue envy!

Thank you, thank you to Ann-Marie for going to my pre-op appointment with me! I couldn't have survived it without you!

I thought I was meeting with Dr. M to go over my surgery scheduled for June 12th, but when Dr. A appeared I was confused. I soon learned that Dr. A was the main surgeon who will do the vascular and reconstructive portion of my surgery (basically all the work). I liked him from the start, confident, honest, forthcoming, compassionate and patient. He spent at least 30 minutes telling Ann-Marie and I all the nitty-gritty involved with this surgery...

Here is what will happen in a nutshell. I'll go in June 12th, surgery will take 6-7 hours. Dr. M will remove about half of my remaining tongue, Dr. A will take skin from the underside of my wrist (to become my new tongue surface), make an incision from my wrist to my elbow and remove tissue and vessels that will make up the rest of my tongue, open my neck, attach one end of the vessel in my neck and the other(s) to my tongue, take a skin graft from my upper/outer hip to replace the skin taken from my wrist. I'll spend the next 24 hours unconscious and if I wake up combative (fight or flight) they will knock me out for another 24 hours. It will take 3 days before the vessels have healed enough for me to move my neck. The first 48-72 hours will be spent in ICU. I will have a feeding tube in my nose for around 15 days. I may have a trach (to breath) for 5 days. I won't be able to talk for awhile (not sure how long). My arm will be in a cast and I'll receive physical therapy and speech therapy to help me get back full function of my arm and speech. (Ann-Marie, did I get it right?)

As you can guess, I got a little teary and overwhelmed to hear all of this. I just told myself, "I can do this". Oh God, let me be able to do this.

After all of this, Ann-Marie and I were able to laugh at the fact that one of the physician assistants thought she was my mom (she really didn't look at Ann-Marie and when she did, corrected herself with "sister?" and Dr. A (according to Ann-Marie, it wasn't in my view) had a booger hanging out his nose!

Together

(And yes, that's Jake on the far left....hee hee!)

Oddly enough, my dear friend, Jen P., and I are conquering together this go round. I hope she finds as much strength in me as I find in her. In honor of skin cancer awareness month and start of summer season she sent out this email:

Dear colleagues and friends,

As some of you are aware, I have been battling cancer for almost five years. I was officially diagnosed with melanoma (the deadliest form of skin cancer) in September of 2003… more than two years after the first signs of the brown patch on my cheek. As a result, I had a significant amount of tissue removed from my face and neck and endured 12 months of interferon chemotherapy. In December of 2007, the doctors found a tumor in my neck… the melanoma had metastasized to my lymph node. After another invasive surgery to remove the tumor and other lymph nodes in January, I had 4 weeks of radiation treatments. Three days after my last treatment in March, scans showed the disease had spread to my lung. On May 2nd, I had a section of my lung removed. I am 35 years old and now have stage IV metastatic melanoma (there is no stage V). And unfortunately, there is no cure and no approved treatment plan for the disease at this stage. I am now trying to stay healthy enough to be accepted into a clinical trial to try to prevent the future spread of the disease to my other organs… my liver, bones, and brain. I tell you all of this in hopes you will become more aware of the dangers of skin cancer and to stress the importance of PREVENTION and EARLY DETECTION.

According to the Centers for Disease Control and Prevention (CDC), skin cancer is the most common form of cancer in the United States. The two most common types of skin cancer – basal cell and squamous cell carcinomas – are highly curable. However, melanoma, the third most common skin cancer, is more dangerous, especially among young people. Approximately, 65% - 90% of melanomas are caused by exposure to ultraviolet (UV) light or sunlight. For more information, please read the attached or go to the CDC website: http://www.cdc.gov/cancer/skin/.

Because May is Skin Cancer Awareness Month, the American Academy of Dermatology is partnering with dermatologists across the United States to offer free skin cancer screenings. If you are interested in finding out where you can go for such screenings, please click: http://www.aad.org/public/exams/screenings/index.html. The uses of preventative measures (hats, sun screens, etc.) as well as early detection (regular skin checks) are essential to your survival.

Thank you for reading my story. Please share it with anyone who will listen. I hope it will save you and those you care about from going through the same experience.

Sincerely,
Jennifer

Wednesday

Dr. M from Tampa called just minutes after I walked in from dropping off the kids at school. I'm so grateful I didn't have to sit around a wait for the phone to ring. Jake just happened to be home (he is usually out the door by 5am), but had slept in a little bit due to a sore throat and hadn't left yet, so we spoke to the doctor together.

The plan, surgery mid June to take more tongue tissue and replace it with soft tissue from my arm. Even though the recent pathology and scans look reassuringly good they want to be as safe as possible and make sure ALL the "bad cells" (I hate the c word) are gone. And although I really don't want more surgery I know this is the best route and will give me the peace of mind I need to move past this. It's a big surgery, a week in the hospital, but Dr. M says I should have a good recover and full function/speech after healing. No chemo, no radiation! Just surgery, recovery and an awesome summer of fun with my boys! Yippee!

I'm planning on having a lap top with me during my mute days in the hospital so I can email, blog etc. I'm counting on all of you to entertain me!

******
The crossing guard at Nathan's school got hit by a car this morning. She was taken away by ambulance as I left the school. I hope she is OK.

******
I saw the baby deer this morning. Alone, without it's mommy....for the second time. I watch too much Animal Planet because I called the wildlife hospital for them to check on it.

Update and on to other things

Preliminary results of the PET and CT scans look clear! Now I wait until Wednesday to find out what the plan of action is. Nervous, but enjoying the glimmer of hope Friday brought. Thank you Dr. C for giving me my results right away! Waiting is agony. Keep thinking good thoughts for me!



Good things happening that are keeping me UP.....

1. Reese didn't pick his nose at school Friday.
2. We had the house pressure cleaned and it looks so sparkly white and clean!
3. Nathan finished up soccer and t-ball this weekend. He's awesome at both and it was such a joy to watch him play. He is very proud of his cool trophies.
4. We spent the better part of the day Saturday in the pool, doing yard work and an impromptu splash in our neighbors pool. It felt soooooooo good to hang out without anxiety tugging at me.
5. There has been a baby deer sighting in the neighborhood (we have lots of wooded areas). We went looking for it last night....we just saw 4 adults, but can't wait to see it.
6. Yesterday when we were getting our suits on to swim, Reese was holding my bathing suit top and when I told him I needed it, he looked at me, pointed to my (rock star, $42,000, reconstructed...there are some perks to illness) breasts and said, "To cover those up?"

Ignore it and maybe it will go away

I haven't blogged about my cancer recurrence since my initial post. My hope was that if I didn't make a big deal out of it, it wouldn't BE a big deal. Plus, I feel cancer has taken up too much of my time already, why would I give it a platform once again?

The truth, I'm consumed in this nightmare of a moment and just want to find my way out. I feel like I'm being stalked. How can it be that for the last three years I thought I was cancer free, but I wasn't? How can it be that a little known cancer of the tongue could find it's way to my non-smoking, non drinking, non tobacco chewing tongue? How is it that I could live 29 healthy, uneventful years only to be plague by cells that kill people for the last 6 years? I know it doesn't make any sense to ask these questions because frankly it's likely I'll never get the answers, but I'm consumed in them.

I want to be boring again, blog about the fact that my three year old got in trouble for picking his nose in school after being asked to stop, or the fact that Obama is coming to FL in one week and I want to be there. Instead, I'm wondering through the day chasing the depression, fear and grief away with drugs and yet they still stalk me.

I had an appointment with a head and neck cancer specialist yesterday in Tampa. I hoped for the best, feared the worse and walked away with the unknown still lingering. The plan, I have a PET (whole body) scan and CT of the head and neck scheduled for tomorrow. They will review the pathology of my recent surgery to see if the margins were VERY clear. Apparently with tongue tumors clear margins have to be larger than most other tumors. The likelihood is that I'll need more surgery to remove more tongue and replace what is removed with skin from my arm to restore function. Then I guess based on how that goes I may have to have more radiation and more chemo. I think I can handle more surgery it's the radiation and chemo that scare the shit out of me. Please God, let surgery make me better so I don't have to endure more life saving poison.

I'm scared and sad. I know I'll find the funny and positive somewhere in all of this eventually, but I'm just not there yet. I just want to shake the "cancer girl" reputation I feel I have and be well so I can take care of Nathan and Reese and watch them grow into handsome, loving men. Is that to much to ask? Don't I deserve that?

Fuck you cancer!

Foot Therapy And Our Garden

After a little retail therapy, I headed to real therapy. As I'm waiting for my appointment I notice the guy next to me has the smallest male foot I have ever seen. I wonder if that's why he's in therapy? And yes, I actually took out my camera and pretended to mess around with it so I could get a picture of his foot....... that's my huge flip-flop foot next to his!

Our garden! It's really coming along.

For Jen

For Jen P., love ya girl and thinking about you today...thinking about us.

There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.-- Harry Crews

I have a couple of girlfriends who are like, healing. We take care of each other. They know when I need to be taken care of.-- Maggie Gyllenhaal

Walking, Listening and Taking a Break

I've been downloading the A New Earth on-line class to my iPod and have been walking my buns off while I listen to it. The weather has been so beautiful I want to soak it up before the heat sets in and I retreat to the air conditioning.

Today, I made the very hard decision to take a break from my volunteer work for the ACS. It's just something I need to do right now and I think this letter pretty much sums up why...

Dear ****,
It has been a great privilege to be a part of the Reach to Recovery program. I feel by sharing my story I give other young woman hope to push through treatment so they can begin to put their cancer experience behind them. It’s been 5 years since I battled breast cancer and 3 since tongue cancer. I always thought once you finished treatment cancer left you alone, but it doesn’t. With each check-up or ache and pain thoughts of cancer flood my mind.

As I try to heal my mind and spirit I decided to stop talking about “my story” except in my Reach to Recovery work. Cancer has taken so much of my time and energy already I just can not give it any more. It is for this reason, I have decided to take a pause from my Reach work for the next year. I don’t take this decision lightly as I know the ***** Reach Program needs young volunteers. I have always felt so appreciated by the ACS. I know ***** is now involved and I’m hoping she can provide the support while I take this break. I’m taking the next step in my recovery. I’ll be sure to check back with you next spring and if time gets the best of me and I forget please don’t hesitate to call.

I spoke to (anonymous patient) last night. From our conversation I gather she’ll need additional support. She’s having a rough time of it. I did not mention my break in volunteer work. I’d like to request that at some point another Reach volunteer contact her as I think she would benefit from follow-up.

Thank you and the ACS for all you do and for letting me be a part of it.

Sincerely,

I figured out the only reason I had continued my Reach work well after realizing it was time to take a break was my ego. If you are reading/studying A New Earth you will understand what I mean by that.

On an up note, WE BOOKED OUR SUMMER VACATION TO NEW YORK CITY TODAY! I'm so excited. We've been holding out on the Big Apple until we felt like the kids were old enough to manage it. The kids have talked about going to NYC since they saw a Little Einstein episode about it. Every time we drive through Jacksonville Nathan asks if we are in NYC! Will he be surprised to see the real thing!

A shout out goes to my mom today. She's been helping with the kids a lot this week and even came to the rescue this morning when I had car trouble. Shortly after picking up our car pool buddy, Samantha, I noticed my check engine light was on. I didn't think too much of it since I knew I was overdue for an oil change. A few minutes later I noticed a rubbery smell and hear Nathan say, "It smells like a bouncy ball in here". By the time I get in the car loop at Nathan's school I see some smoke coming from under the hood, but the temperature gage is fine. Could it be a fire? I'm sandwiched in between cars and figure if I can keep the car moving hopefully I can get to the auto shop down the road. Nathan and Samantha are being silly and not paying attention to the fact that we are now at the front of the school and I'm starting to panic a little about the smoke. I yell at them to "GET OUT OF THE CAR!" Oh, and my windows are down so we don't have to suck in the melting rubber ball smell so no doubt the teacher out front must have thought I was one bitchy mom! No, "Have a great day, I love you" from this mom! Thankfully my mom met Reese and I at the auto shop and after leaving the car for repair took Reese to school and me home. A half a million dollars later the car is fixed.

Thanks Mom!