Which Way

So the update is my digestive system is still not working properly and I continue to be on IV nutrition. They have bumped up my tube feeding to 20ml’s per hour (15ml = 1Tbs) and I have had low residuals. This is good news! My digestive system is showing signs of wanting to work… I’m even beginning to have hunger pangs. I’ve been hungry for what feels like forever but it was more the sensation of chewing and tasting along with the entertainment value it provides.

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What I don’t understand is what sense does it make that I would start another round of chemo if my gut isn’t fully working? I realize I am getting adequate nutrition from an IV but I can’t even process my tube feedings. Why the hell did I get a gastric peg if I can’t even use it for what it was intended? To me there are so many Red Flags… Call me crazy but if my entire digestive system isn’t working, that’s an issue. There are so many side effects to chemo and this could very well be one of them. I’ve been told my intestines not working is most likely due to being malnourished for such a long time. That pushes the question even more, why would I put my already dysfunction-ing body through such a toxic experiment? Last round was successful in the eye’s of the doctor. The tumor in my neck has decreased by about 25-30% and the tumor in my tongue is literally half its size! That’s great news, but I have a rash on my chest and neck that won’t seem to go away, constant diarrhea, a stomach that won’t processes food of any kind, a constant level of fatigue and sleepiness I can’t seem to conquer, frequent if not consistent nausea that I’m sure all has some to do with different the medication I’m on, and the list goes on and on. In spite of all this, the doctor is hopeful the chemo plan will be very successful. Is she as hopeful as she was about me getting out of the hospital a week ago, or this weekend? It’s hard to put trust in a physician that seems to build hope just to keep me in her idea of the correct program. Promising hope every couple days that I will be able to go home only to hear that I will be kept in the hospital through my next round of chemo doesn’t exactly help build my confidence in her or the system.

I am looking for and fervently seeking out what is in my highest Good. Not just what will keep me alive or what treatment option will make everyone happy, but the highest good for the existence of my soul. Have I learned my lesson? Do I get to enjoy this life now that I’ve learned how to live? Surely there is an answer… One more right than the other. I wish there was a clear cut road ahead of me… I want so much for the pathway to my healing to be living an organic lifestyle with only natural healing energy as the source of my health, but I am seeing the results with chemotherapy. The now results will cost me much down the road. Nobody seems to want to confront those issues. Just like I didn’t want to see or admit that the cancer in my body has been the pathway to my healing… bringing me closer to my whole health. One day I will be thankful to have had this experience. Right now, I just want an answer.

Hospital Visits - yay!!!

I do so LOVE your visits to the hospital! Thank you to all who have been able to make a trip to see me! This whole cancer-chemo thing is a whole new experience for me so I am learning as I go. Here are a few tips when coming to see me…

1. Be sure to text ahead if you are planning to bring flowers. If I am neutropenic I’m not allowed to have them in my room. Boo hiss!!
2. If you have the sniffles & think it’s just allergies, please don’t risk it. We can always take a raincheck.
3. Please do not bring food to my room. I’m still very hungry and unable to eat… I may say some very rude things followed by some shocking gestures.
4. Keep the visit short (20+ minutes) if in a group setting. One-on-ones are easier for some reason.
5. Please keep in mind talking is difficult for me even with a pain pump.
6. Be prepared to take me on a walk!! I need to keep up my strength and busting outta this room is the highlight of my day!

Needing Help

Asking for help isn’t always easy. It’s having to admit I can’t handle everything on my plate and that I am in fact human. Shocking news, I know! So here goes… I need help eliminating stress in my life. Some if not most of my stress right now is making sure Chris and Max are taken care of. Chris is a wonderful father and doing a good job with all that he is faced with these days. It is extremely difficult to be both Daddy and Mama. This is something Chris and I are finding out rather quickly… Below is a list of things that would help out greatly and we would be MUCH appreciative of any one thing handled!

1. Drop off or help with a home-cooked meal
2. A week night babysitter for an hour or two...
   There’s a great neighborhood park by Chris’s duplex which Max adores, strolling through the neighborhood is another good brief outing for lil’ misters
3. A weekend babysitter for at least two hours
4. HEB runner...
   Max is a good shopper as long as there is a snack in hand so feel free to bring him with you!
5. Help pickin’ up or cleaning the duplex
6. Hang out and help with the little things…
   Set aside Max’s clothes for the next day, make sure a diaper bag is packed by the front door, give Max a bath, help Chris brainstorm a grocery list. Any one little thing helps! You presence alone is worth the distraction, you know?

One of Max’s aunts made a fabulous suggestion of offering to be available one day a week. If there is any way for your schedule to allow for something like this, the structure of having one day to not worry about lining up help (even if only a couple of hours) helps out more than you could imagine!

There are so many little things you can do to help. Call Chris, I’m sure he will not turn down the help. If he does, just show up. He will appreciate it!

Thank you all for your love and support. We really wouldn’t be able to make it through all of this without you!

Round One

After receiving treatment for 9 hours Monday 4/13/09, I felt somewhat icky for the remainder of the evening and ended up in the ER at 2am because my digestive system was not working. After slow improvement, I was put on a feeding pump and sent home Wednesday morning. Unfortunately, I did not process the feedings and ended up collapsing in the elevator at my parents’ hotel while still on the chemo drip. I was rushed to the hospital and treated immediately due to dangerously low blood pressure. Unfortunately I have been at Seton ever since. Becoming neutropenic (white blood cells extremely low) did not help matters but I am slowly recovering. The blood transfusion helped tremendously!! Now if my digestive system would kick into gear I’d be in business. Dr. Patt (Chemo Oncologist) is keeping me in the hospital until I can tolerate the tube feedings and gain a respectable amount of weight. Her theory is I have had an extremely hard time with chemo because I am so malnourished. Once I get to a healthy weight and am able to eat both orally and through tube feeds, I will be much stronger and much more prepared for the next round of treatment. My impression is I will be in the hospital for at least another 4-5 days as she does not want me to deviate from the program.

I am staying positive… Positive I will overcome. I will be here in whole health for a very long time. “My soul – it is there I find Peace, and when I’m at peace, I can handle anything. Each and every day is precious, each moment a gift.” This quote is on a plaque just as you enter the Oncology wing of Seton Hospital. A good friend of mine did a crayon rubbing of the quote and it hangs in my hospital room. It reminds me of my strength and the childlike wonder and unshakable faith in things seen, unseen and felt. May we all have the courage to hang on to our child perspective as the world and its doctors/professionals try to bend and mold us to their will; their want.

I will make it through to the other side a much stronger, much healthier woman and mother. I will be and have more of myself than I ever have in this lifetime. Thank you to all for your prayers, healing energy, positive thought, affirmations and overall support. It’s because of them I will see greener pastures.

Black & White: Diagnosis and Treatment

I am currently diagnosed with squamous cell carcinoma of the tongue (tongue cancer) which has metastasized to my lymph nodes on the right side of my neck. This is considered to be stage IV due to tumor size and location. The cancer is currently considered to have derived from a strain of the Human Papillomavirus (specifically HPV16). I have sought out alternative treatment which has made me strong enough to face the Western Medicine treatment plan.

The current Western treatment involves three rounds of induction chemotherapy (TFP-Taxotere, Fluorouracil, Platinol). So it is three 3 week cycles (3x 3week)… The first day of each cycle I have a full day of infusion of the Taxotere and the Platinol. I am then given a pump to drip the Fluorouracil (commonly known as 5-FU) for 4 days. After the pump is disconnected I have two weeks off to recover before starting the next round. The hope is to shrink the tumors to the point of easy removal without reconstruction of my jaw.

I am combining the Western Medical treatment with the Alternative Treatment to treat the mind, body & spirit as one. This will speed recovery and do a more complete healing resulting in whole health. With the healing team visiting me twice daily at the hospital and 10 times a week when I am strong enough to be at home, my path of recovery is guarded, and in my heart and mind, assured.