Sunday, October 23, 2011

Not Done Yet

 So this was one of the tough weeks. It started out well enough, Robin was still having pain, but it seemed to be under control. All in all, it hadn't been too bad.

 Then Thursday rolled around. I took the dog down to the vet to get her hip checked out, since it hadn't improved in a while, and it had gotten really swollen. We didn't get good news. It seems that it is pretty common with Rotties of her age to develop bone cancer, especially in light of the trauma from her hip displaysia. So, it is pretty much just keep her comfortable until the pain meds don't help anymore.

 So, I stayed home from the Dojo that night, since none of the family was really in the mood for much of anything. I put the kids to bed, and then Robin started having terrible pain in her leg. Her pain meds didn't touch the pain, and she was in too much pain to stand the car ride to Geisinger, so we called an ambulance for her.

 Sitting in the Emergency Room waiting for them to get her pain under control again was rough. How much healing can one do while in agony?

 She hadn't had any scans done in a while, so we didn't know if the last chemo she was on had done anything. We know the radiation on her head had done something, that much we could see, but as far as the rest of her, we were in the dark. That was the worst, since we were working with something, and for whatever reason, this far along, the best idea they had was just to throw things at it, and hope to find something that works.

 I'm not a doctor, but I am pretty vested in her recovery, so I think it's a little late in the game to try that. We already wasted a few months since her Breast Surgeon wanted to get good margins for her surgery, even though she kept pointing out that she wanted a double mastectomy, so the margins were basically pointless. Then, after two chemos and a few months, we found out her tumor had grown. And spread.
 I'm not trying to place blame, but this was the same doctor that told her, a year ago when she had the duct removed, the one that was causing her to get blood from her nipple, his advice was that it was probably nothing. And that she should stop playing with it.
 So, one of the main indicators for invasive ductal carcinoma was no big deal. It couldn't be that, because "we don't see that in young women." Once again, not trying to place blame, but if more attention had been paid a year ago, we might not be at this spot right now. I know I can't change the past, but the word needs to get out, you need to be in control of your treatment.
 Don't let the Doctor's ego get in the way of your treatment. Obviously, young women do get cancer, and this is one of the main reasons young women often die from it. Young women usually get the more aggressive forms of breast cancer, but the government and big medical tell us not to worry about it. Young women rarely get breast cancer. But how many young women in Hollywood have we seen just this year? How many young women do you know yourself?

 So now we are at the point we're at now. Robin is in the hospital with a blood clot in her leg, metastases in her lung, hip bones, arm, not to mention the ones that were in her head. They finally admitted that they had been doing a poor job of pain control. Not that she hadn't been telling them that for months now. Yes, a lot of chemotherapy drugs cause pain. Some of the pain is quite substantial. When you have cancer eating away at your hips in addition to it, there is probably pain.

 So we finally met with the NP from Palliative Care, who specialize in treating the pain, not the actual disease. They are a tremendously underutilized specialty, since most modern medicine is only concerned with wellness, and not the state of the  patient. It looks better on a resume to heal someone. The ends justify the means, so to speak.

 Also, to clarify, Palliative Care is not Hospice Care. Palliative Care does not mean you are just waiting to die now, though they do come in also when it comes to that point. They are the ones who specialize in making you feel better. So, the NP we talked to told us there was no reason for her to hurt this much. There was no reason for her to be constipated all the time. These things could be treated.
 She also pointed out that she would get them all together so they could really sit down and talk treatment.

 So, at this point, this late in the game, it seams that Geisinger's talk of her "team" was just that. It always felt like the discussion between specialists had been poor, with the most constantly up-to-date specialist had been her Radiation Oncologist. He made it a point to always be read up on her charts, and had always talked to the other Doctors in charge of her treatment.

 But where we are now, all the chemo seems to have been ineffective. Her cancer seems to be chemo resistant, something we were all starting to feel from the beginning, when her breast tumor grew to 8 cm while she was receiving the chemo. We could have monitored that better, but when we mentioned that to her Oncologists, that we felt it wad grown, he "hated to burst our bubble", but it hadn't. Even though, the surgery, when the tumor was on the table in it's disgusting, bulbous glory (Metaplastic Tumors are a horrible amalgam of different kinds of cells, like an insane stem cell), it had, in fact, grown significantly.

 So now here we are, modern medicine has failed to this point. The run of the mill treatment has done very little. We had been praying that if it wasn't going to improve, that God would just take her home. He hasn't. For some reason, it is our lot to suffer. I just pray that something will come of it.

 I pray that through our suffering, someone else will avoid this. I am still praying that she will be healed, or at least we will find something that works. If we find something that works, trust that we will get the word out.

 I just started to contact some people who are working on some cutting edge things. I don't know what to expect; I know that actually getting to try things, things that might work, is like pulling teeth.
 Remember that corporations run things. Therefore the dollar ultimately makes things happen. We have scientists out there really making strides, but they are often held back by the community and the government.

 That's just the state of it. I for one, and not done yet. I am willing to make the calls and try. I am not ready to tell my children that mommy isn't coming home. I'm not ready to be a single parent.

 I'm not ready to spread the ashes of my best friend and the love of my life over her favorite spot and the pond, because she doesn't want her body alone and in the dirt, at a place she doesn't want to be.

 I can't blame her either. I would rather have my body someplace I love.

 But either way, I'm not ready to do that.

 Otherwise, if that is all we have to look forward to, God didn't do me any favors bringing me back from the War. So I trust there is more to hold out for. I trust that there is a reason we're still here pushing on.

There has to be a reason for the pain.

 We're not done yet.

 Fuck Cancer.

Sunday, October 16, 2011

Shameless 'Stache plug

 As most of you have probably noticed, I am competing in this year's Mustaches Vs. Cancer competition, which is an annual competition in October and November that raises money for the pediatric department of the Memorial Sloan-Kettering Cancer Center in NYC.

 Every year, brave men grow spectacular lip-sweaters, to not only make the world more beautiful, but also to do something great. Since 2008, they have raised over $75,000 to combat cancer in children.

 So, for another year, I am bravely stepping forward into the world of mustachioed gentlemen, doing my part to raise money for fighting children's cancer, and making the world a little bit more wonderful in the process.

 My profile is here, under the pseudonym Miyamoto Mustachi (pretty catchy!) I promise to keep growing if everyone keeps giving!

 Here are some amazing cookie dusters to look at while you ponder dontating. (borrowed from The Art of Manliness

                                                                           Sam Elliot

                                                                      Teddy Roosevelt

                                                                        Burt Reynolds

                                                          The incomparable Rollie Fingers

                                                                       Ron Burgundy

                                                                           Sean Connery

                                                                      Wilford Brimley

                                                                      Bill the Butcher

                                                              And of course, Tom Selleck

Friday, October 14, 2011

Small Miracles

Small Miracles are just as good as the big ones.

 On Wednesday, Robin woke up and told me that her legs didn't hurt as bad as they had been. We didn't talk much more about it, so as not to jinx it, but we were definitely excited at the prospect of an increase in her mobility.

 She said she had actually noticed it at first during the night, when she got up to go to the bathroom. I'd forgotten to bring the potty chair into the bedroom, so when she woke up, groggy, she just walked to the bathroom, and didn't think much more about it.

 She still needs the cane for short distances, and the scooter for any type of long mobility, but we will take less pain. It is definitely a start, and a small miracle in my eyes.

 Robin was just telling me the other day was that her mobility was what she missed the most. The pain, you can deal with. Eventually, I guess you just get used to it, and it becomes the new normal for you. The lost mobility, however, isn't as easy to deal with.

 I realize it is something that I take for granted. Even with back pain, and the occasional other aches, I have no real loss of mobility, so I can't even begin to comprehend not being able to chase the kids. When I want to get up, I get up. When I have to run, I run. My legs do what I tell them to.

 That's the thing she misses most. It is a loss of freedom when you really look at it. When your mobility suffers, you end up being a lot more dependent on others. And, as a very independent woman, that has been tough for Robin. We all take for granted being able to do for ourselves.

 So, while she didn't "take up her bedroll and walk", getting up with significantly less pain that she had been dealing with every day is definitely a start we're happy for. Add that to the fact that the tumor on her skull is barely noticeable, and God and the chemo are definitely making things happen.

 Here is to the beach next summer!

Friday, October 7, 2011

Small Breaks

 This week, we had a few small breaks. Robin got her scooter, which is pretty much a Godsend. As much as it sucks to see Robin having to use a scooter to get around for any long distances, it gives us back the mobility she had been missing.

 It was a little bit of a fight to get it. I think there is a certain stigma when it comes to mobility devices, since she isn't old. People expect that if you need one, it comes down to being lazy or fat. One of the things people don't consider about wheelchairs is that when you have a young family, simple things like going to the grocery store is a huge hassle.

 Our oldest is ten. The middlest is four and our youngest is 20 months. I'm pushing the cart with Morgan (the youngest) in the seat, and Logan (the middlest) in the cart itself. Robin doesn't have arm the strength to push herself in a wheelchair, due to the muscle breakdown from all the chemo. Not that her chair was one she could really push anyway.

 So, we were left with trying to get one of the chairs with a basket from the store, or she tried to fight through the pain and use the cart as a walker. I hated seeing her do that.

 Or, I suppose we could have tried to make a train and push everyone through. Or, I suppose Meg could push the cart or the chair, but we did most of our shopping while she was at school, since my weekends are usually in the middle of the week.

 Yesterday, though, we had our first outing with her scooter, and it performed really well. I can lift it into the back of the van fairly easily. It breaks down for easier lifting and storage, and it fits almost perfectly in the back of the van. To fit the scooter and groceries requires a little bit more maneuvering, but it is a small price for the benefits it gives us.

 The best thing, though, is that it saves Robin from a terrific amount of pain. It seems the majority of the pain is actually a side effect from the chemo, which not everyone gets. So far Robin seems to be hitting all the 'low occourence' pain side effects. When you add that to the pain that comes from the state of her hip, it makes her pretty much housebound.

 So, once again, the scooter is a Godsend. We are years away from the things we used to do, like hiking, long walks, but I have a lot of hope we will get back to that someday. For now, I'm happy with being able to get back to the little things.

 I know it's a huge step for Robin. When you are used to being active, and being out and about, being housebound is torture. For a while now, just coming along on errands made her feel better, even if she often stayed in the van. Sometimes a change of scenery is enough to keep you going.

 The thing that is most poignant to me is all those little things we used to take for granted. Getting groceries, going out for lunch. Going for walks together. You have no idea how much those little things mean, how much of a blessing those little things are until they are gone.

 Treasure them. I regret all those times I got frustrated on simple trips like that, be it the kids, or the checkout lines, or whatever, and I let my temper get loose and ruin it. Those simple little things are the bigger part of life, and I am going to try to make them special.

 Make every day special.

Sunday, October 2, 2011


I also just noticed that the last post was the 50th!
I think that qualifies as a Milestone.

One Foot, then the Next.

"A journey of One Thousand Miles begins with a single step."
                                                                                            -Lao Tzu

 When this all started, it was one of those things we couldn't see past. For all intents and purposes, I couldn't see anything past Thanksgiving of last year, the future just wasn't registering, but yet, here we are.

 In another month and change, it will be a year since Robin was diagnosed. What a year it has been. I had times in my life when I thought life was hard. Parris Island, being a freshly married PFC with no money and a kid on the way, Afghanistan, transitioning out of the Marine Corps. So much in our day to day lives is a struggle, but nothing prepared us for this one. You just expect life to end, in a way, shortly afterwards.

Except it doesn't.

Kids still have needs, bills need to be paid, work needs to be done. Then you have all of the things that you couldn't have thought of having to do: Dispensing meds, dealing with Chemo sickness, trying to help your loved one through the pain. For me, the last one is the worst. It's not something you can actually do anything for. You can only give someone so many narcotics. All you can do is hold them until they fall asleep again.

 It's like trying to fight an enemy made of fog. When it comes down to it, there is no fight. There is nothing you can do to make it better sometimes. Sometimes all you can do is wait for it to blow over, then help them up again.

Like I've said so many times before during this, all you can do is put one foot in front of the other and keep going. You have to be strong and push them, pull them, carry them through it.

It is a long road, but they are all single steps.

P.S. I just looked at the stats, and I think the blog has gone completely international. At least to one or two people on each continent. That makes me happy. Cancer doesn't care about color, religion, age, sex or any of that. If someone gets hope, or at least some understanding from reading my words, knowing they aren't alone, then I have done something.