waiting is hell

this weekend was wonderful and hellish...


Katie's wrist has been hurting a lot more, especially at night. shooting pains up and down her arm all the way to the shoulder with any big muscle movement anywhere in her body. this is with vicoden and oxycontin. it is a lot worse than it has been. it makes me even madder, that we delayed the chemo a week because of the supposed appointment at Sloan, and if we had known it was going to be cancelled more than 2 days before, she could have started the chemo last week. the chemo is supposed to shrink this thing, quickly from what dr. damron seemed to imply. and now she has to go another night, not only worried about tomorrow, but in extreme pain. it is tolerable during the day, with lots of vicoden, but the oxy is not helping at night, not for very long. and we both know that more pain means its growing and pressing on nerves. at one point her whole arm went numb, felt like it wasn't there, though luckily switching positions got the feeling back. i hope that it begins the shrink with the first treatment, otherwise i don't think either of us can take another 3 weeks of this. and the doctors seem hesitant to prescribe anything stronger because it will knock her out...well, i think that is better than hurting so much she can't stay in one position for more than 30 seconds, sobbing because it hurts so bad, being unable to do anything other than sit on the couch and watch tv because of the pain...


but we were able to have a nice relaxing weekend. we were talking the other day and katie said that, although she is scared out of her mind, she has been happier the past few weeks than she has been in a long time, calmer...and i guess i have been too. i think its just knowing what we are going to do about this, knowing what this is and feeling confident in at least the medical oncologist.


we spent most of saturday shopping; farmer's market saturday morning, then tried to go to the library (closed), then hit the craft store and pet store. Katie got 3 new girl platys for her community tank, since the one girl in there is getting harrassed by the two boys. I needed red paint for the altar box i'm making her for the hospital, and ended up getting a bunch of other stuff, as tends to happen to me at craft stores. Then later we walked down to the shopping plaza down the road and bought fly strips, since our apartment is infested for whatever reason, and a window fan. then we rented Proof at blockbusters and watched it that night.


sunday and monday, we just vegged out, cleaned and cooked a little bit and lay around, playing with the bunny and cat. I spent a lot of the day sunday trying to get the computer to behave itself, and sort of succeeded. it was so beastly hot yesterday and the apartment gets almost no ventilation, being on the third floor, so not a huge amount got accomplished, though the livingroom/dining room/kitchen look moderatly clean. The bedroom, animal room and hallway are today's project. oh yes, and dishes. Katie's mother is driving up tomorrow and may stay overnight. and her father and possible sister(s) are coming up on thursday, maybe. so i'd like the place not to look quite as cluttered as usual, though that might be hard.


so today i clean, and work, and clean some more and maybe have dinner with katie's boss ( i have no clue how this happened, but she said she might invite him over) and prepare for this all to begin tomorrow, prepare to find out a little bit about what the next year will be like. i just hope that this first round will shrink the tumor at least back to the point it was a week ago. because i can't stand to see her hurting this much.

damn civic duty

so, no trip to sloan this week, since dr. athanasian has jury duty...what's with that? i'm all for everyone fulfilling their civic duties, but i think that some people should be exempt, such as doctors who have patients flying in from all over the world to be treated. damn lucky we were flying via the corporate angels thing, and didn't actually have a non-refundable flight booked.

but the theory is that the appointment will be rescheduled for june 16th. we'll find out in the next few days.

i really want to talk with athanasian, because dr. damron is not approaching the surgery nearly as aggressivly as i would like, nor with enough regard for later motor function. but whatever, we have 3 months to work that out.

"cream" of broccoli soup

"Cream" of Broccoli soup

1 tbsp extra virgin olive oil

1 large onion, diced

1 large garlic clove, minced

4 cups veggie stock
4 cups broccoli florets
2 tbsp braggs aminos or soy sauce

2 tbps nutritional yeast, or more to taste

dash of cinnamon

3/4 c silken tofu

dash of paprika

black pepper to taste

heat oil in the bottom of a large soup pot. add onion and garlic and saute until browned and translucent. add veggie stock, broccoli and braggs/soy sauce. cook, covered, over medium heat, until broccoli is soft.
Using an immersion blender: add the tofu and nutritional yeast and blend until smooth.
Using regular blender: add about half the soup to the blender, add half the tofu and half the nutritional yeast to that and blend until smooth. Set aside in a seperate bowl and then repeat for remaining soup. Transfer all blended soup back to the pot.

Heat gently. Add paprika and cinnamon and stir well. Let simmer for a few minutes then taste and add pepper and any additional nutritional yeast.

I added some additional cooked broccoli florets, cut into tiny pieces, to add some different texture.

Last night was cheese pizza (a "yay no elbow lesions" treat) and green (red romaine/spinach) salads with dried cherries, pepitos, orange bell peppers and just balsamic vinegar and italian seasoning as a dressing. nothing too exciting or all that healthy, well, except for the salad part.

clear and chemo fun-ness

Katie had her MRI of her elbow yesterday and on initial examination, the orthopedic oncologist thought it was lesion-free, just had some possible joint damage. he is also ok, sort of, about us going to Sloan.

Quite frankly, I don't care one way or another how he feels...I wasn't nearly as impressed with him as I was with Dr. Wright, the medical oncologist. Dr. Damron seems...smirky, or something like that. But as long as he is competant. He hsa worked with Dr. Athanasian and likes him, so ok. We asked him about what exactly he would do with the ulna, how much he'd take out and all that...and I'm not sure he gave us the best answer...He said he was planning on removing the effected part of the bone plus a 2-3 cm margin, which doesn't seem like enough at all. He is also not planning on replacing any of the bone he removes and he said that she shouldn't notice much difference in flexibility/dexterity/strength, though there would be a little bit of loss in these areas. But a) this is her right arm and she is right handed and b) she does bookbinding, which requires very fine motor skills, mostly with her right hand.

So we'll talk with Dr. Athanasian about this and see what he says. Dr. Damron is an orthopedic surgeon, meaning he mostly works with legs. Dr. Athansian specializes in hand/wrist/arm surgery so I rather defer to him on this one. Plus the surgery would be covered 100% at Sloan, where we'd have to pay the deductable here. but whatever, we'll find out on Friday what our options are.

Katie also talked with Dr. Wright over the phone yesterday and he outlined the "road map" for her chemo: she'll be admitted next wednesday AM and they'll put in a double-lumen port-o-cath, then, assuming the port insertion goes fine, they'll start the adriamycin/cisplatin that night. She'll get the full dose but over a longer period of time, overnight I believe, along with lots of fluids, and then they'll monitor her reactions. She'll be out either Thursday night or Friday afternoon, depending on how she reacts. Then she'll have 3 weeks off, then on the fourth week be admitted for a day and get the methotrexate and fluids and rescue drug. She'll get the methotrexate once a week for 3 weeks, then, on the fourth week, get the adriamycin/cisplatin again, hopefully without hospitalization, then have another 3 weeks off. 3 months of this. then the surgery and then, well, whatever they decide to do for the next four or so months following that. I am so glad about the 3 weeks in between, as is Katie, since it will potentially make work easier for her. and really, it only works out to 12 neoadjuvant chemo treatments, even though they are high dose, nasty ones. but lots of down time in between and all that.

I have no idea how bad this will be, but we can only prepare for the worse but assume the best. This week's project is a living will, which names me as having medical control if she can't make decisions. This is mostly so that our rights as domestic partners are protected legally, but also, in a worst case scenario, so her wishes are laid out clearly, for everyone's sake. we've talked about doing out living wills for a while now, but only half heartedly, because, hell, why would we need them? but, yeah, here we are, with the big C breathing down our necks, so we have to be prepared for the worst. But, yeah, if she makes out a livng will, she won't need it, right? thats how these things work. its how these things have to work.

liar

i just talked to a friend of mine, someone from college who I have't spoken with in at least a year. this girl, she is one of the best, most supportive friends anyone could have, just a good person overall....and she's asking me what's been going on with me and Katie, how things are, and I had to say that everything is ok, talk about jobs and whatever, yeah, syracuse is nice, yeah yeah yeah. fuck, i hate this. especially since she is in NYC, where we will be this friday, and i would love to see her, love to see her and her roommate, another friend from school, but what do I say? no, everything isn't alright, and do you want to have coffee after we finish with our appointment at Sloan Kettering on Friday?

i don't know who i can tell, and who I can't, I don't know who Katie want to know about this. I asked her if she wanted me to post something to myspace about it, since everyone we know is on there, basically, but she wants to tell some people first, before we tell everyone. which is fine,it is her choice, she needs to have control over who knows...but all her friends are my friends too and vice versa. so if there are people I need to tell, I can't if she doesn't want them to know. sometimes it feels like I have no one to turn to other than family.

one more thing to talk about, one more thing to worry about. and the elbow MRI today and appointment with the orthopedic oncologist to talk surgery and the appointment at Sloan on Friday and then, next Tuesday, the chemo...

sesame miso string beans

ok, so I want to at least try to get some recipes in here, since we are trying the nutritional therapy thing, trying to get Katie's immune system in the best shape possible and keep it that way throughout the chemo, plus have some chemo sideeffect friendly recipes to try out, that are still as nutrient-packed as possible..well, we'll see how that goes, but anyway, here was tonight's dinner.

Sesame Miso String Beans

about 6 cups of fresh green or wax beans, trimmed and cut into 2 inches pieces
3 tbsp soy sauce or Bragg's aminos
1 tsp red or other dark miso

1/2 tsp honey

2 tbsp toasted sesame seeds

Steam the beans for 5-10 minutes or until bright in color but not too soft. Drain and set aside. Toast sesame seeds by heating gently in a dry, preferably cast iron, pan until golden brown and aromatic. Blend the soy sauce/Braggs Aminos, honey, miso and sesame seeds in a small dish. Pour over the beans and toss to coat.

Veggie "Fried" Rice

1 cup dry brown rice

2 cups or so of water

1 cup frozen mixed vegetables or other small veggie mix or greens

1 clove garlic, minced

1 tbsp olive oil

2 tbsp soy sauce or Braggs

a dash of chile powder

1/4 tsp crushed red pepper flakes

1 egg, optional

Bring water to a boil, add dry rice and cover. Simmer over medium heat for 30-45 minutes, adding more water if necessary, so do this whole step in a rice cooker.

After rice is cooked, heat olive oil in a large skillet, add garlic and saute until garlic begins to soften. Add frozen veggies and toss. Cook until they are mostly thawed. Add cooked rice, soy sauce or Braggs, and seasonings. Toss well and continue cooking for a few more minutes. If using, add the egg and quickly toss to spread evenly throughout the rice. Cook until egg is completely cooked and rice looks moist but not wet or sticky.

Serve with the sesame miso beans on top, with a drizzling of extra sauce.

I was really impressed by the sauce, a nice rich flavor but not too salty when cut with the rice. Always good to find a new use for miso. It is loosely based on a recipe I've had for awhile, but this is a lot simpler. I threw the egg into the rice for protein, since chemo can mess with protein levels...trying to find some easy to eat, quick recipes that pack a punch nutritionally. I would ordinarily use tofu but we've had it a lot this week.

jeez, these entries are bipolar...

preparing for disaster

We went shopping the other day, more shopping than we had done in a long time. We both pride ourselves at getting by on not too much, on filling the cabinets and pantry and fridge with whole foods and only what we need...but we spent hours this time, agonizing over what to put on the shopping list, what we will need and how much, what we need out of all the lists about what to eat to heal the body, what to eat to help counteract the chemo and to make her body as strong as possible. What the animals need, so we don't have to worry about them for at least a little bit.

then running from store to store, almost filling carts, something we never do, with dried beans and grains and canned goods, crackers, nuts, seeds, hard candies for dry mouth, gingerale and herbal teas for nausea, flours and yeast enough for bread for months...Our pantry is filled with extra bottles of olive oil and canned tomatoes and beans, the freezer with frozen fruits and veggies.

it feels like we are preparing for a impending natural disaster, like the rush of people at the stores before a nor'easter hits boston. I know its not helpful to think like this, but I can't help it. We kept playing the "if we buy this, we won't need it" game, as if somehow having enough supplies for a hundred smoothies will prevent mouthsores when the mucous membranes in her mouth are killed off by the chemo...and yet we keep playing this game. I'm so sick of it already and we're only a week into this.

sorry, yesterday and today have been bad.

Introductions

I'm starting this blog because my partner of (almost) five years was just diagnosed with high-grade conventional osteosarcoma, osteoblastic form. She has a large tumor on her right ulna, just under her hand. The bone scan showed *something* going on in the ulna at the elbow end, but we aren't sure whether this is an injury to the joint because of the angle at which she has had to hold her arm for the past few months, or because it is a secondary lesion. We are, obviously, hoping for the former, but an MRI next monday will determine for sure.

Katie was diagnosed one week ago today...she had a surgery scheduled that day to remove what we, and the doctors, assumed was either an aneurysmal bone cyst or a giant cell tumor, both benign. We had to be at the hospital at 9, the orthopedic surgeon, a Dr. Damron, who she had seen previously, called at 7:30 to give her the results of the biopsy. I guess it is a good thing that the results came in when they did, as surgery at this point could have caused more tumor growth and a greater chance at metatases. But i will never, ever forget that moment when she hung up the phone and told me that she had cancer..she is only 23, 23 years olds don't get cancer, especially not healthy, vegetarian, non-smoking, active 23 year olds. It felt unreal...it still does.

So we spent the whole day running from one department to another at the hospital, getting all the follow-up tests; bone scan, more x-rays, more mris...and then went home, and sat, and waited...Katie talked to numerous receptionists, all, with the exception of one, were wonderful and helpful, but no doctors. We actually just saw the medical oncologist today, one week after her getting a five minute phone call that changed everything. But, luckily, during that waiting, we had time to find some amazing groups online, people who are already going through this or have survived this and other cancers. I'm sure I'll post more about them later, but everyone we've talked with has been an amazing resource. I'm almost glad we had the time to do the research, because, although neither of us know nearly enough about this thing, we know more, we knew what to expect from the doctors, we know a little bit more about what to expect from treatment...

Treatment: Dr. Wright, the oncologist we saw today said that he is estimating about 4 months of neoadjuvant (pre-surgical) chemo, followed by the surgery and recovery time, followed by 4 more months of chemo, or more, depending. This is a slightly lower estimate than we were expecting, but we are going to Sloan-Kettering, in NYC, next week for a second opinion, which Dr. Wright is encouraging and completely comfortable with. I really like him, not only because he looks like Dr. Kevin Fitzgerald from emergency vets, but because he has an amazing bedside manner and is soft spoken and doesn't seem to have a god complex and dealt just fine with me, which I was worried about. But he suggested she start the chemo on the 31 of may, as to not interfere with the S-K trip next Friday.

She will be treated with adriamycin, cisplatin and methotrexate. The first round of chemo will be just the adriamycin and cisplatin and it will require her to be admitted for at least 2, probably 3 days, as a precaution to a negative reaction...assuming she reacts ok, hospitalization shouldn't be required for later adria/cisplatin treatments, they can be done out-patient. The methotrexate, however, requires a hospital stay every time, because they are using a very high dose, which we were expecting, and it requires a large amount of fluids to be given in conjuction with the drugs and also they need to monitor the levels of the drug in her system and administer an appropriate amount of another drug to counteract the tissue damage the methotrexate can cause (i have the name of this drug written down somewhere, but i don't remember it).

so thats all i can write right now. i am so exhausted already, and scared out of my mind. I hate waiting on treatment, but we need to talk to the people at Sloan first, so that they can work witht her team up here. i hate waiting period. but i know that is what most of this year will be, most of the next several years, waiting.