Wednesday, April 25, 2012

You'll Eat It and You'll Like It

Today I am going to write about something that has nothing to do with cancer (yay!), but has everything to do with my sanity (or lack thereof) as a human being. Today's topic: Meal Planning.

Up until the day I moved in with my husband, I only really ever had to worry about feeding one mouth. Mine. So, between...what say...1995 and 2010, I pretty much did whatever I wanted in regards to breakfast, lunch and dinner.

Thinking back...I went through many different phases. Healthy phases...where I ate spinach salads and whole grains mixed with more vegetables day in and day out. Unhealthy the time I ate Lucky Charms morning, noon and night for a couple of weeks. (I do not recommend this. It did some funny things to my umm...poo.) Sometimes, I would cook myself elaborate multi-course meals, usually with a glass of wine between each course (I always seemed to end up pretty sloshed by the end of those nights). Then, there was always the old standby of "breakfast for dinner". Bacon and eggs. Waffles. Pancakes. French Toast. Hash browns. All those glorious breakfast foods that a working girl never really gets to eat. Mmm.

Before I moved in with my husband, I was pretty much eating Lean Cuisines or spaghetti or stir-fry every night. Shopping was easy. Planning was easy. And, if I wanted to eat spaghetti for dinner 7 nights in a row...more power to me.

Then, I moved in with The Hubs. And life, as we know it, changed in ohsomany ways. I lived with my husband for about 6 months before we actually got married. And I have always been grateful that I did, because it was HARD and I think if I had just officially and legally tied the knot and THEN went through those first 6 months...I may be locked up in a mental institute somewhere today. Seriously. But, I digress.

I think that, at first, I was really excited about the prospect of this new "role" in my life. My new responsibilities as the "domestic goddess" of the household. It was a new opportunity for me to plan and organize and find new and added purpose in my life. An opportunity for people to count on me and appreciate me (hahahahahahahaha).  Sigh. I had so much to learn.

With my stepdaughter in the house for 50% of our dinners, meal planning took on an added challenge. I wanted to eat healthy (and lose weight for my wedding), but I wanted her to actually eat what I made without too much fuss (hahahahahahahahaha). Sigh. Again...I had ohso much to learn. (During that time, I also learned that my adult self-esteem wasn't all that solid because I did, indeed, feel hurt and sad when my meals were rejected by a then 6 year-old).

Eventually, I started to develop a system. We had a repertoire of dishes (that I TRIED to make healthy) I could count on each week. They all needed to be relatively easy, as I did work a full-time job and my stepdaughter's bedtime was fairly early...we didn't need her eating dinner in the bathtub.

During this time...we pretty much counted on a few things for nights we had my stepdaughter: mac and cheese; tacos; hot dogs; chicken with rice and broccoli. Every weekend, there was some sort of slow cooker meal. Every Tuesday was "Taco Tuesday". I loved this. I didn't have to think about it and I didn't have the usual "What are we eating for dinner?" interrogation <insert whiny tone here> the minute that my husband and stepdaughter walked in the door.

Then my husband, who had been fairly quiet and accommodating to my meals, decided to start having an opinion. The nerve. I can't remember if this happened before or after the official knot had been tied. My guess would be after...once he legally "had" me. LOL. So, one Tuesday while I was happily constructing a taco (and mind you...I changed it up a bit here and there...using turkey or chicken or fish, soft shells, crunchy shells, etc.) and he says, "I am sick of tacos. We need to stop the tacos for awhile." WHAT!? This was one of the few mindless things I had going on in my life and he wanted to take that from me? Sigh.
So over the past 2 years, I have experimented with the meals and with the "rotation". Sometimes successfully. Sometimes, notsomuch. But, we all eat every night and so far no one has died of starvation or food poisoning. Yet. (I also have learned to lower my domestic goddess expectations). But, in all honesty, I really feel no joy in this task. Some meals incur grumblings and complaints, while others bring quiet indifference. Very rarely is there an acknowledgement of how awesome a meal is. Ha. It happens. And its usually by me. But...really.

How did this become my responsibility? What would happen if the responsibilty was turned over to my husband or to my 8 year-old stepdaughter? Does anyone enjoy this task? Does anyone have a trick? Sigh. I hope I can find a way to enjoy the planning of the meals....

Until then, I will continue with my favorite new line: As my husband skeptically questions what he is about to put in his mouth...."It doesn't matter. You'll eat it and you'll like it."

So there.

What's for dinner? Vashni

Thursday, April 19, 2012

How Having Cancer is Like a Full-Time Job

Let me first start off by saying that many, many, many people diagnosed with cancer do continue to work full- and part-time jobs in addition to managing their cancer. This can be by choice, but in most cases I would guess, it is by necessity. I will be the first to tell you that I have no idea how they do it and I wish that everyone facing cancer treatment had the I have stop working and focus on getting well. Reality isn't that kind or generous sometimes though and my heart goes out to those individuals who have to juggle both work and a life-altering diagnosis. Especially those that juggle work, family (kids) and cancer. I just cannot even comprehend.

Anyway...I was thinking the other day how much managing my cancer and all the other "stuff" that comes with it is kind of like having a full-time job. Here is what made me think that:
  1. Rolodex--I realized while filling out paperwork for yet another doctor (a pain management specialist), that I really needed a rolodex to keep all my doctor's business cards and contact information. I have a gadzillion cards floating around with hand-scribbled alternate phone numbers and email addresses and I haven't really figured out a method for storing these things.... other than letting them "float around". I do have an iPhone...I bet there is an app for that.
  2. Expense Reporting--My husband and I decided that it would be a good idea for 2012 to keep meticulous records of how much money we (and the insurance company) are spending toward my medical care. I am one of those people who gets a "stiffy" at the thought of creating a spreadsheet (ask any of my former coworkers), so this plan had me salivating at the laptop. Stick me in a room with some data, a computer, and the Microsoft Excel program and then just slap a happy face sticker on my forehead. I am on cloud 9. To up the enjoyment factor for me...ask me to give a power point presentation, with graphs, on my findings. To be sure...this spreadsheet is pretty elaborate and keeping it updated is quite tedious, but it is this kind of painstaking detailed work that I have always thrived on. For the record...some interesting facts from my spreadsheet...this year to date, we have logged over $100 in parking fees for doctor's visits, treatments and procedures.  I have visited my oncology office 27 times (racking up over $92,000 in charges (that's before insurance adjustments and payments...don't worry my portion is totally tiny compared to the total charge...but imagine if you had no insurance!!));  have had and/or tried 14 different types of prescription medications (no wonder they know me by name at the pharmacy); and have had 4 blood transfusions, 2 CT scans and 6 therapy sessions with a mental health counselor. All in the first quarter of 2012! I love my little spreadsheet of information.
  3. Time management--An obvious one...even though I am not in a real job right now, I still sometimes have a pretty full "meeting" schedule. In fact, I don't think I have ever consulted my calendar as much as I do now. It's like having a traveling job...OK, where do I need to be today? What time of day is it? What are the traffic and weather conditions? If I am having some sort of procedure, transfusion or treatment, I sometimes need to make sure I have someone to drive me. My husband can help with this sometimes, but other times, I need to rely on someone coming from out of town, so that means preparing the house for guests in advance of an appointment. You have to be organized, I tell you.
  4. The pills--Another realm of time management that I have recently discovered is managing all these pills. I have my regular pills, my chemo pill, my pain pills and my constipation pills. Oh and vitamin pills. I found out recently that when it comes to pain pills (which you really don't want to take too often), I am not so good at remembering when I took the last dose. So, I had to start a little notebook to keep track. I visited with a pain management specialist today, who basically said that if I am taking pills as often as I have been then pain is not being "managed" (LOL) hopefully on his plan, I can get back to leading a somewhat normal life where I am not popping a pill every few hours. Ha. When's my next hit, man...
  5. The Paperwork--I have so many papers, I really don't know what to do with it all. The bills, the EOBs, the Flexible Spending Account statements, the lab reports, the pathology reports, the goes on and on like the theme song from Titanic. I do have an accordion-type file thing for filing my papers, but even that doesn't seem to be able to contain and control the forest of trees I am collecting on the floor of the study. Then, there are the papers I have to fill out and submit to the insurance company or the Flexible Spending Account people or the doctors. The Boss (aka My Husband) has been getting on my case about these lately. He is not a fan of unfinished business and I have a lot of unfinished business piling up at the foot of his desk recently. :oD <--sheepish grin
  6. Networking--I am realizing that just as in my professional life, of which I currently have none, it's good to "know" people. My oncologist is friends with The Doctor at Hopkins. Without that relationship, I doubt that I would have gotten as thorough care as I have gotten and I doubt that I would have gotten in to meet with The Doctor so quickly. Likewise, I can thank my Primary Care Physician for getting me referred to my awesome oncologist. I know there have been other connections in this journey that have helped me and that there will likely be more. Anywhere in life, it's good to "know people".
  7. Coworkers--In pretty much all of the jobs I have had in the past, no matter how many spreadsheets I was able to joyfully create, it was my coworkers who really made the job worth it. It was my coworkers who made me want to get out of bed each day and come to work. I kind of feel like all of friends and family and medical team are my coworkers for this job. You send me notes and gifts to make me laugh and smile. You drive me to treatments. You research and google things for me so that I stay away from the bad stuff. In essence, you make me want to keep working and getting better. Not just for me. For all of you too. So, thank you! Thank you for giving me a reason to keep going to work everyday!
Love to you all, Vashni

Saturday, April 14, 2012

To the Hip to the Hop(kins)

Hello! I owe you all a follow-up post to fill you in on my Hopkins visit.

First off, let me tell you...this Hopkins cancer experience was so much better than my last experience there and it turns out that it is because I was in two completely different parts of the hospital system. This time, I was seen at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital. Before, I was seen in the regular Outpatient Hospital Building, where I waited over 2 hours to actually see the doctor, whose bedside manner was "eh"; they expected me to do all the legwork to collect my previous medical records; and I got the feeling that they felt they could do these things just because they were Hopkins and they could.

This time around, Hopkins managed to collect (or at least start the process of collecting) all my previous medical records, including actual pathology slides of my cancer cells, during the 2 days they had to prepare for my visit. They pretty much knew everything about me before I even walked in the door. (When I go to the Wilmer Eye Institute at Hopkins, I always have to explain my entire medical history to whatever fellow or resident I meet with first and then sit and watch them read my medical irks me to no end). My wait time was about...5-10 minutes max. I didn't see The Doctor right away, but I had a scheduled appointment with her fellow for a half hour prior to my scheduled appointment with The Doctor. Even her fellow was amazing.

Anyway...for the most part, my visit was a bit anti-climatic. I guess I expected to walk in the door and have the answer to my prayers presented to me on a silver platter. Ha. If only it worked that way. It turns out that they DID have a clinical trial in mind for me, but after reviewing my history, I don't qualify for it because of my need to take the awful prednisone for my eyes. This prednisone crap is, unfortunately, going to keep me from being eligible for a lot of studies. I am, however, to receive a call next week from the study coordinator at Hopkins with a list of possible studies for me to consider.

In addition to these studies, I can also consider another standard treatment option that I haven't tried yet, as well as, waiting it out awhile to see if the drug I am currently taking is doing anything to improve my condition. We are also working on getting a similar consultation with someone at NIH and NCI. The choice is mine what to do next and there doesn't seem to be a clear-cut correct path to choose, so I have a lot to think about.

Regardless of the anti-climatic outcome of my Hopkins visit, I do feel like I accomplished a few things during my time there:
  1. I learned a little more about cancer and cervical cancer. I knew this on some level before, but I now have been reassured that the reason I can't find more information about stage IV cervical cancer anywhere is because it's just not that common. Most people are free and clear after treatment during an earlier stage and very rarely does it recur. I am just one of those "special" people, I guess. Because of this, there also aren't a lot of studies specific to late-stage cervical cancer and/or a lot of clinical information about what does and doesn't work for late-stage cervical cancer patients. That being said, even with cancers that do have a lot of clinical data to support specific treatments, patients are all still different and unique and what works for one person may not work for the next. There is no one right answer for anyone. Bummer.
  2. I am not necessarily as close to death as I sometimes think I am. After my last scan, I have had some pretty low moments...thinking about if I will be here for my birthday, for my next new car purchase (I had a small breakdown at the Mazda dealership during the purchase of my husband's new car), to work outside the home again, etc. During my visit, they asked me how "active" I am and I was like...oh, not very. I sleep a lot and if I walk it is with the dog to the end of the block and back, etc. And then they said, "but are you able to do things around the house for yourself, like cook and clean?" Oh yes!! Though my husband may argue with the second point. LOL. I still lead a "pretty normal" life. I do sleep a lot more. And you won't find me training for a marathon or even a 5K anytime soon. I can't stand in one place for very long or do heavy duty yard work. But, I am certainly doing a lot better than I could be. Not to mention...I am showing no signs of my liver falling apart anytime soon. The Doctor and her fellow gave me the impression that I am doing pretty well. I am not a lost cause. It's not time to dial up hospice. I think I sometimes compare myself to my pre-cancer, pre-prednisone self and I am nowhere near that girl right now. I don't know if this is the pressure that I am placing on myself or the fact that I know there are folks (friends and otherwise) out there that just don't get it. That don't get why I can't just up and eat right and exercise hard and get better. I don't get it either. It just doesn't work that way with cancer, I guess.
  3. I think when I started writing this, I had a third thing to say, but I've forgotten it already. LOL. This happens a lot. But, I know it also happens to my other same-age friends too, cancer or no cancer...we are aging folks! Ha ha. OH!! I remember!! My liver! I got to see the images of my liver. I never got to see this before. They showed me the liver mass and my entire liver. The mass is not "small" anymore, but The Doctor said it is in a "good location" and well...we all could see that there is still a lot more healthy liver tissue than sick liver tissue and this made me very pleased.
So....there is more that I want to say, but I think this is enough for now. I will save it up for another post. For now, thank you all so so so much for your thoughts and prayers and encouragement. Please know that I consider you all my companions and co-survivors on this journey and this journey ain't over yet! Let's wash our clothes, reorganize and repack our luggage and keep truckin' on.

Love you,

    Tuesday, April 10, 2012

    The Latest Scoop some of you may have gathered from my posts on The Facebook...the roller coaster ride continues. As I mentioned in my last Quick Lil Update, I had a CT scan last week. Thursday, to be exact. And I also met with my oncologist Thursday afternoon to get the results. Quick turnaround was nice. Not having much time to think and stress about it was nice. I was feeling pretty confident (possibly because I didn't have much time to think and stress about it. Ha). But, that jolly confident mood was quickly replaced by shock and denial once I saw the face of my oncologist as he walked in the door.

    "It's not working," he said, shaking his head with his lips tightly pursed in the way he always does when he delivers bad news. The tumors and affected lymph nodes all increased in size this time. In fact, the liver masses doubled in size. In one month. Yeeks! This is not the news that I wanted or expected to hear...though it does make sense as to why my pain has increased so much in the last month.

    My oncologist doubled my pain medicine, prescribed me tamoxifen tablets (one of the drugs shown to work for me on my targeted study), and fired off an email to his colleague at Johns Hopkins. He has been consulting with her about my case for the past few months. She is in the loop. She is an expert in gynecological cancers. I have heard her name and her expertise and her loveliness mentioned in my support group meetings. I am psyched that she has been/will be involved in my care.

    By Friday afternoon, I got a call from my oncologist's office asking for my permission to be contacted by Johns Hopkins as there were several treatment options that they felt would be a good match for me. By Monday afternoon, I had a consultation scheduled with The Doctor and from the sounds of it an idea of a clinical trial for me. PSYCHED. Doin' a little dance.

    I was/am, admittedly anxious about it in some the fact that my cancer has progressed far enough to be considered for a clinical trial and the fact that so many things so far have not worked and the fact that...those liver masses...1 month! Ack. But, the more I read about clinical trials and this doctor, the more confident and excited I get. This is definitely a good thing.

    So, that is where I am at now. I meet with The Doctor at Hopkins tomorrow afternoon. My pain meds were doubled and I am almost feeling fine. I had a blood transfusion yesterday and all that juicy blood is really giving me a boost. Time to sit back, relax, let go and let God...

    OH...speaking of more little thing that has me totally jazzed right now...a close family friend approached me on Sunday and said that his pastor, who apparently follows my blog (or was at least introduced to the mega millions entry I posted last Monday), would like to use that blog entry as part of his sermon. He was requesting my permission. Holy cow!! I am like...beyond honored to have someone want to share my writing with others. Jazz hands! Happy dance. So cool!

    That is all for now. I shall report back after I meet with The Doctor at Johns Hopkins tomorrow.

    Peace and love and all that jazz to you,


    Tuesday, April 3, 2012

    What Money Can't Buy

    This past weekend, many of my friends and the entire world of The Facebook and The Twitter were a-buzz with comments about what they would do if they won the $640 million Mega Millions jackpot. From lavish vacations to larger homes to charities, etc. And so, I started thinking about what I would do with such a windfall...and it struck me kind of hard, like a slap in the face kind of hard, that instead of feeling gleeful excitement over the extravagant possibilities, I found myself overcome with a deep sadness.

    The thing matter how much money I would never be enough to buy me (or anyone else for that matter) pure natural juicy health. No amount of money in the world would render me cancer-free. No millions upon millions of dollar bills would bring back those we have lost to cancer and other diseases. I think it was the first time in my life that I realized that money can only do so much.

    Don't get me wrong. Financially, my husband and I are comfortable. We don't live extravagantly. We don't own fancy things. We don't own a big mansion (especially in the DC suburbs). But, we have good health insurance. We can pay our bills. And we can splurge from time to time when we need/want to. But, I DO realize that there are many many people out there that are battling cancer that do not have the same financial resources to get the quality health care that they need and a lottery win WOULD prove beneficial in their fight for health and wellness. But, even in that can only do so much.

    Thankfully, in addition to modest financial security, I have immeasurable (BEYOND IMMEASURABLE) emotional support. THAT cannot be bought or lotter-ied off. THAT is priceless as well. I thank God everyday for the things that are priceless in life that I can say I, hope, faith, friendship, family, hugs, smiles, cherry blossoms, dog kisses. I could go on and on. I don't need $640 million to access these things. They are here for me anytime I need them. Well, maybe not cherry blossoms, but you get the point.

    Anyway...for perhaps the first time in my life...I had a dramatic shift in my perspective on money. For most of my life...I was of the mindset that there was never enough money and I wanted more, more, more. Now, I realize that more money doesn't equate to perfection and sheer happiness. I mean...there are a lot of material things I wouldn't mind having...and I think that a lavish vacation of any kind would do wonders to restore my sense of well-being...but in the end, money can't buy the things that really matter most. And I am grateful that I truly, deep down, "get that" now. 

    Faith, Hope and Love to you,