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 liberty...as I have had...to 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 vitamins...my 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 well...my pain is not being "managed" (LOL)...so 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 receipts....it 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 you...my 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

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 records...it 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,

Vashni

The Latest Scoop

So...as 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 ways...like 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 God...one 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,

Vashni

Quick Lil Update

Quick little update: (Yeah right...I never seem to make my blogs quick).

Anyway! My liver pain has resolved. Yay! But, the lower back/pelvic pain remains the same (or maybe even a tad bit worse). Boo! It's been difficult to keep a positive mindset when I am in pain and I finally stopped fighting the narcotics and jumped in. I am now on a fentanyl patch with the vicodin or percoset for breakthrough pain. And plenty of laxatives to keep things moving. If ya know what I mean. Oh and prunes. Loving me some prunes right now. I've been feeling a lot more comfortable the last few days and even though my energy is still kinda low, my attitude is much much improved. And, we all know what a positive difference a good attitude makes in any kind of journey! Especially in this kind of journey.

To add to that...Monday, we received the results of the "targeted study". The results were...encouraging. It's all a little bit over my head, but in essence, there are about 10 drugs that showed "clinical benefit" for me. One of these is a medicine similar to the cocktail I am on now. I am unclear how similar they are, but am encouraged nonetheless. Especially because there are options! The report also indicated about 5 drugs that showed "no clinical benefit" for me. THREE of these I have already tried. 

Does this mean, as my mother asked me, that we have been "spinning our wheels for the past 6 months"? Eh. As I see it...yes and no. Apparently, there is something in the medical world known as "standard protocol". And that is what we followed here in my conventional treatment. For my type of cancer, first we try this, then we try this, and 3rd we try this. While the first 2 showed no real benefit to me, my cancer hasn't progressed significantly. That's a positive to me and I can't really sit and question the what-if's because that would just be a waste of my time and energy.

Instead of waiting the usual 3 cycles (21 days each) to re-scan my belly, we are doing it at the end of this 2nd cycle. So, I have a CT scan scheduled for the end of next week. This will hopefully indicate if the stuff I am taking now is really working and address the new/additional pain I am having (I can't rule out the fact that the pain may be caused because the chemo is working). This way...if it's not working, we can jump on one of these 10 other drugs sooner than later and crack down on these cancer bitches. Fwap! (Sound of whip. Ha.)

So...yeah...I got a nice dose of HOPE this week and I was really needing it. By the way, I love hearing that y'all are still praying for me. It means SOO much to me. Also...your emails, FB posts, cards and texts abolutely make a huge difference to me. I always seem to get one when I need a boost.  Y'all are the best! Thank you for reminding me that I am never alone.

Love to you, Vashni

Traumatized

When my husband asked me if I was going to blog about what I am about to blog about...I said "No way"! So, I can't believe I am about to blog about...uh...what I am about to blog about, but whatever. We're all friends here. Someone has got to talk about this stuff. Right? I already opened up about many intimate details of my life by the very act of keeping this blog, so what the heck...why not!? (She says with a little reservation...will I come to regret this later?)

Now that I have completely piqued your interest (I hope I don't disappoint you). Ha.

So...last I posted, I was going to be working to stay on a narcotic schedule. I did. For like 2 1/2 days. I was totally gung-ho about this too (despite some of your warnings to step away from the narcotics)...it's the way I like to get behind a new plan if I think it's going to make my life better. I started off right away with the highest dosage and the shortest increments of time. And, I did feel better. No pain. Strange happy loopy feeling. Good times.  Why did I wait so long?

Oh yeah. Cause...as I was taking these happy loopy pills...I could literally feel them sucking all the fluids out of my body. I was drinking tons of water. Taking laxatives. But, within 24 hours of starting the new "regimen" I was in the middle of an all out intestinal crisis. Blockage. Major bowel congestion. A traffic accident in my lower abdomen. 

I have always been one of those people who visits the loo multiple times a day. I like to keep things...um...moving. So, even one day of...err...blockage, is like having my foot stuck on the track when a train is coming. I was miserable. Desperate. In pain. MORE pain. Damn you, percoset. All I wanted to do was poo.

I continued the laxatives, but stopped the narcotics. On Saturday morning, my husband left the house for about an hour. I decide that during this time, I will "try" to go. (Nothing good ever happens when I am home alone on a weekend). So ANYWAY, while he is gone, I have what I am now referring to as the "Near-Death Straining Incident".

I tried. And, by tried, I mean I was in full-out labor trying to birth a 16-pound baby turd. I could feel it crowning, but it wasn't about to leave the confines of my warm cozy colon. Then. It started. I started to feel very nauseous. I started to sweat profusely. And, I started to feel faint. I, for sure, thought I was dying. And because I didn't want my husband to find me dead on the toilet with my pants around my ankles, I did what any young wife would do. I somehow managed to get up, flush, get my pants up, grab my glass of water and my iphone (priorities here, people), and stumble to my bed. Where I continued to lay in a state of near unconsciousness praying...literally BEGGING...to God "Please not now. Please, I am not ready to go." I legit thought I was a goner.

Obviously, I didn't die. I, in fact, lived to tell this gruesome story. 

*Side note: while I was still laying in bed recovering from my Near-Death Straining Incident, I could hear my husband come home. I could hear him go to the kitchen and get himself something to eat and drink. Then I could hear him sit down on the recliner and turn on the TV. All I could think was....how many hours would it take him to discover my body if I hadn't survived my Near-Death Straining Incident?? Sheesh. Men. 

Anyway...since The Incident, I have been in a fair amount of additional pain from the trauma I seemed to have caused my intestinal tract. Still pretty miserable. Difficulty getting comfortable enough to sleep. When my husband noticed me doing weird calisthenics in the bed (and momentarily on the floor) at 6 am this morning, he asked "How long have you been doing this?"...My response: "Oh...only a couple of hours. Why? Do you think this is weird?" Ha. 

Anyway...at the doc today they prescribed to me, what my nurse practitioner referred to as a "super laxative". I took it at noon and now I wait. I am hoping for a religious experience (though not a near-death one). As I was leaving the office, after my treatment today, my nurse practitioner said..."hopefully, that'll get you moving". Oh please. I hope so!

Ah...the trials and tribulations. Sigh.

Thanks for letting me share. May you all have a beautiful bowel movement in my honor today.

Hugs, Hair, and Hurts

I got a hug from one of the nurses today in celebration of The Return of My Hair. People who have seen me bald tend to get very excited when they see me now. To me, who sees myself in the mirror everyday, it's not changing or growing fast enough. But, it IS growing and that is pretty rad. 

I could tell based on our conversation (this nurse just takes my blood and checks my vitals, but doesn't really know anything about my "case"), that she thought that The Return of My Hair meant that I was done with treatment and all better and healthy. Oh how I wish that were the case. 

Anyway...I have learned over the past few months, that most people, who haven't seen me in awhile but know I am battling cancer, don't know what to expect when they do see me. From these encounters I have learned that many expect that I will "look the part" of a cancer patient. That I will be sickly pale and sickly skinny. Some even picture me in a hospital bed, hooked up to tubes and beeping machines. This is far from the truth. With the exception of being bald (well, now just butch lesbian buzzcut (not that there is anything wrong with that)), I still look pretty much like...uh....Vashni. Post-prednisone fluffy Vashni. I am actually quite plump (much to my dismay) and my cheeks are round and rosy as ever. 

I am told that oncologists are the one type of doctor that are happy when their patients don't lose weight and that a well-nourished cancer patient has better odds of surviving...so even though I cringe each time I step on the scale at the doctor's office, I suppose that I should also be silently celebrating that my weight remains at a steady and hefty number. Likewise, I have been told by friends and family members that they secretly celebrate that my weight isn't decreasing at all. :o)

One thing that you can't really see when you look at me is that I am in pain. A lot. Like all the time right now. It is frustrating and defeating and all around a big stinkin' suckfest. And when I am in pain...my positive hopeful mindset spirals pretty low. Swings hella far in the other direction, in fact. Like, morbid self-deafeating thoughts at 3am and intermittent cry fests and old people noises coming fromst my lips. Not pretty. 

Some of my pain is residual from the liver biopsy. I have thought bad evil thoughts about this doctor for the past week. I realized, in addition to causing me all this pain and trauma, his bedside manner and general demeanor started my negative spiral of this past seven days. His attitude seemed to be "you have stage IV cancer...what hope do you have of making it" and "just be quiet and let me carelessly stab your liver cause you're gonna die anyway." Obviously, he wasn't saying these things...but this is the mindset that I left that hospital with and I have been shaking it ever since.

I have drugs. Cause one thing I have also learned in the past few months is that when you are a cancer patient, you can pretty much get your pale skinny hands on any kind of pill you want (I even had an offer from a fellow cancer patient who wanted to hook me up with some weed). But, I am reluctant to take all these drugs. Narcotics especially. The last thing I need on top of cancer is an even more toxic liver and a drug addiction. And, I was also thinking (in my altered pain-induced mindset introduced during the above-mentioned liver biopsy) that they think I won't make it either and they just want me to take these drugs so I can be comfortable until I die. Sigh. Yeah...I am revealing some pretty dark and disturbing notions that have been circulating my brain.

Anyway...it turns out that in my reluctance to suppress my pain with pretty white narcotic pills, I was doing the narcotic thing all wrong. I would take one here or there, but it never really touched the pain. I am now on a "schedule". It has to build up in my system and then I need to stay on top of it before it comes back. Already, its working. Who knew?! 

I also saw my therapist today. She made me realize that instead of focusing on and repeating the phrase "I don't want to die", I should really be trying to focus on and repeat the phrase "I want to live". Which is true, peeps! I WANT TO LIVE. I SHALL live. My time is so not up yet and I will not let some stupid liver-poking surgeon make me think or feel otherwise. So, yeah...it's a simple shift but a big one and I am gonna go lay down in my narcotic coma and repeat to myself....I want to live.....I shall live....

Peace. Love, Vashni

Second Verse...Same as the First

So...as many of you gathered from The Facebook, I had my second liver biopsy yesterday. This was technically something that I elected to do in order to find better treatments for my cancer. (Quick recap: they will send my gooshy liver tissue (I got to look at it...yum) off to a company who does targeted treatment studies of my tumors and my blood (I think) to find a customized treatment plan for moi). 

Beforehand, I was "pretty" gungho about doing this. My usual..."I'll try anything that could help" approach. However, as the procedure time got closer and closer, my apprehension and anxiety increased. My first liver biopsy was no walk in the park and I really couldn't believe I was going to put my poor little liver through this again.

Originally scheduled for 1pm, they had my parents and I arrive at the hospital at noon. I already knew prior to arrival that the procedure time had been moved back by one hour to 2pm. But, they like you there 2 hours prior to the procedure so that they can torture you and make you miserable. Seriously, I don't know what they need 2 hours for.

Well, it turns out that they needed more than 2 hours for me. We spent the first 45 minutes in the regular waiting room. When I asked how far behind they were, they didn't have an answer, but they moved my parents and I to another empty waiting area. Ha ha. Our own little space. After about another hour, I asked "My procedure isn't going to be at 2pm, is it?"...to which they had no answer, but they brought me a bed, a gown and a blanket and set me up in that within our "private waiting area". Interesting customer service policy, no?

Not long after that, they moved me to my official pre/post-surgery "bay". This was more exciting for me because there were nurses and doctors and other patients, etc. to keep me entertained. I was here for another THREE hours before they started my procedure.

During this time, my parents left to have lunch and I got hooked up to an IV of....nothing. My vitals were checked. My urine tested. My blood sent for counting. I met with the doctor. I met my nurses. I met the orderlies. I stared into space. I eavesdropped on other patients. I whined and  complained to anyone who would listen about how hungry and thirsty I was. I sat and I waited. I answered my medical history questions. I played with my iPhone. Dear Lord!

It turns out that I needed platelets. They weren't transfusion low, but they were liver biopsy (aka we don't want you to bleed to death while we stab your vital organs) low. We waited some more. At some point during this wait, my parents came back one at a time. When my dad came back he said "Well, you look no worse for the wear." How shocked was he when I explained that I still hadn't gone anywhere! Ha ha.

The doctor came back...there was an issue. The platelets they had were RH positive and I am RH negative. This was not a big deal if I was 100% sure that I never want to have babies. But, let's face it...I am a woman. I change my mind 2-3 times a day. I could try the biopsy without platelets...risky but doable. I could get the RH positive platelets and possibly have a reaction that would possibly cause me to miscarry an RH negative baby down the road. I could wait for an order of RH negative platelets to arrive from another facility which would be several hours. Umm no.

Who knew getting a liver biopsy had to be so complicated? Anyway...after some thought, I decided to do what was best for me in the moment and let the rest of the cards fall where they may. I got the platelets. Of course...then we had to wait for the platelets to be delivered from across the hall...and you know how quickly things like this happen in a hospital. Sigh. Did I mention that I was anxious and hungry?

Finally, they carted me off to the CT room (they use current CT scans of my liver to make sure they are sticking the needle in the right spot). I start to feel the sedation (meant to put me in a twilight zone). The room is spinning. The doctor preps my side and I jokingly ask if he is done yet. He does not laugh. He tells me to go to sleep and let him do his job. Then the needle goes in. And the tears, panic, and labored breathing come. It reminds me of college days when I would be drinking and clearly inebriated only to snap instantly out of it to deal with some crisis or drama demanding attention and focus. The doctor requests more sedation. It doesn't work. I am immune to it now. I am told afterward that I have an extremely high tolerance to the sedation and that next time I have a procedure, I should be given Valium. Damn. NOW you tell me? Sigh. The doctor stabs my liver 6 or 7 times. He proudly shows me the teeny tiny worm-like pieces he has collected in a vial. I continue crying...stopping only once to say "cool". I cry for like 30 more minutes (I blame this on the sedation...it has happened every time). The nurses laugh and tease because I tell them that the sedation makes me sad. LOL.

I spend another hour and a half in recovery, eating saltines and drinking ginger ale. My husband comes and the 4 of us sit and stare at one another. My diaphragm keeps cramping and spasming painfully. It sucks as much as the last time except I am not nauseous. Yay!

I am still recovering today, though I think it is starting to ease. Days like this...full of pain and frustration make it difficult to stay positive, but I know that I will come out of it and back into the sunshine of hope. 

Anyway...thanks for listening and thanks for letting me share the trauma of the 2nd stabbing of my liver. Only better days ahead, I know! Hopefully, this will all be worth it. If not...like my dad always likes to say "It builds character". That being said...my parents are  the real heroes here...they built a lot of character yesterday sitting and waiting and waiting and sitting. At least I had some drugs and excitement to break up my day! Thanks Mom and Dad!!

Love, Vashni

Time

March already!? It's unbelievable how quickly time is flying by...especially now that I am starting to realize that there just isn't enough of it! 

My therapist and I talked recently about my lack of motivation lately...otherwise known as "inertia". I have had this issue my entire life. This is not a new problem at all. I am more motivated and active when I have more to do. And, right now, while I am unemployed and focusing on rest and health...I find myself...uhh...inert. I just can't get myself going. It's so frustrating because while I see there is benefit to resting and being still and just sitting with myself, I feel like I am wasting time. Time that is precious. Time that I won't get back. This delicate balance is a struggle for me. I suppose it is just a fact of life and the human condition. I shall not beat myself up about it.

And then there is "Words with Friends". Dammit. I need an intervention. Because while I am sitting still and being with myself, I should at least be contemplating the deeper meaning of life and all the treasures it holds...not trying to figure out how to use my letter "Z" to my best advantage. Sigh. At least I am exercising my brain cells. Or something like that.

Anyway...I am almost done with week #1 of the Topotecan cocktail. Doesn't it sound like a drug that I should be taking while banging on a drum and chanting? Maybe puffing on a peace pipe or cleansing with some sage? The side effects so far have been almost non-existent. I will get my blood counts done tomorrow to see how those red and white blood cells and platelets are faring, but based on how I feel...I think they will be in the "good" or "ok" range. Perhaps my vampiress days are over. Still having some back and pelvic pain, but I have some good drugs for when I need them, which is mostly at bedtime. You know..."sorry honey, I just took some narcotics...I am too tired to scratch your back." LOL. I kid. I kid. 

Next week...I am having another liver biopsy. If you read my blog post about the first one...you know how traumatized I was by this experience, so I am a little reluctant and anxious. I am told that since the masses are a little larger, it will be a much easier procedure...but, I am not totally convinced. The reason for this "redo" is worth it to me though as my doctor is going to send this tissue off to a company: Caris Life Sciences. Here, they will do a targeted profiling of my cells and hopefully find the best treatment options specific to my body. It's new-ish. It's a long-shot. But, it's worth the liver jabbing if it can save and/or prolong my life. And if it can help science...I am kinda all about that too. 

That's my update for now. Take care. Live long and prosper! 

Love, Vashni

An Update Fo Shizz

So...it's been awhile since I shared a health update on this forum (though some of you are pretty caught up via The Facebook).  Thought I'd share what's been going on, medically-speaking.

I am a Vampire:

I finished 3 rounds of my latest cocktail (Cisplatin and Gemzar) on February 9th. I had my final blood counts done that morning and by that evening I was checking in at la casa de Suburban Hospital for some overnight blood-transfusing. Seems that this cocktail really did a number on my blood. And by "did a number", I mean...I had like no blood. This last round, my hemoglobin was at 7 gm/dl and my platelets were at an all time low of 3. To give you an idea of what this means...normal hemoglobin levels should be between 12-16 gm/dl and normal platelets should be 150-400. So 3 was pretty much...well almost 0. Eeks. 

It was a long night, but by Saturday morning I was all full of The Blood-Infused Energy. It was awesome. In fact, the other day, when I was feeling a bit rundown (even though I know my blood counts are great now), my first thought was..."I wish I could get some blood". I am officially a vampire.

The Scan and the Results:

After an energetic weekend, I had my follow-up CT scan on Tuesday morning. The scan was uneventful and I braced myself for the results, which were scheduled to be revealed on Wednesday at 3pm. It was a long 30 hours or so of trying to quiet my mind.

The results came back...eh...notsogood. The liver masses (there are 3 total) are a teensy bit bigger. Nothing notable in my pelvis (though my pain is back, so I am cornfused about this result). Time to put the kibosh on the Cisplatin and Gemzar and try something completely different. Sigh. I, again, have mixed emotions. Disappointed, yet ever hopeful. 

Adios to Cisplatin and Gemzar:

I am actually kind of glad to be moving on from this cocktail...as it knocked me on my tail for reals. The Cisplatin made me nauseous, non-hungry and left an awful metallic taste in my mouth. The Gemzar is what destroyed my healthy blood cells. I am glad to say adios to them. I am 3 weeks post chemo and I feel so much better, physically...minus that nagging pain in my back and pelvis...little bastard.

The New Plan:

Monday, I start topotecan (brand name: Hycamtin). I get this infused everyday for 5 days straight and then get 2 weeks to recover from it. I have no idea what to expect, but I feel hopeful and optimistic that a) it won't destroy my blood in such an aggressive way as the last stuff and b) the 3rd time's the charm. Topotecan is gonna work.

My Eyes:

I tried tapering down to 5mg of prednisone, which I take to keep my optic nerves from blowing up. It didn't work. 5 mg was too low, I guess, and my right eye clouded over and started hurting. I am now back up to 20 mg for a bit and instead of my optic nerves blowing up, now my cheeks are about to explode. Hmph. 

My Hair:

My hair is growing back!! I have dark brown/maybe blonde, maybe gray hairs coming in all over my scalp. I am thrilled. I feel beyond excited and seeing fuzzies on my head gives me hope that there is life after treatment. Normal life. Without hats or scarves or wigs. Of course, I have no idea what the topotecan will do to my hair follicles. But, for today, I celebrate my fuzzy wuzzy hair!!

Alright...I wanted to write more more more...but I am going to a support group tonight (which will undoubtedly give me some blog material) and I don't want to be late!

Ciao y'all!

My Medical Story

It occurred to me...from questions asked...that many don't really know the actual history and back story of my current medical conundrum. You may not actually be interested, but you know what...I am gonna share anyway. Touche'.

2008

Around about March of 2008, after YEARS of abnormal pap smears, colposcopies*, LEEPS*, biopsies and dysplasia* diagnoses, I was officially diagnosed with Stage Ib cervical cancer. The diagnosis came after a LEEP procedure, which included a cone biopsy* (see my definitions of all this crap below) of my cervix. What my OB/GYN at the time found was a 1.3 mm (yes...teeny) lesion on my cervix that tested positive for squamous cell carcinoma. The lesion removed did not have clear margins...meaning there was no clear distinction between the cancerous cells and the healthy cells, so a repeat conization* was recommended to get it all out. In addition, the normal procedure for this stage of cervical cancer was to do a radical hysterectomy and take out my baby-holder. As a mostly single (I had JUST started dating my husband) 34-year old female, I wasn't sure about losing my uterus yet, so I was referred to a fertility-sparing gynecological oncologist at UNC Hospitals.

This doctor met with a team of peeps at the hospital and further recommended the repeat conization and a pelvic lymphandectomy to verify if the cancer had spread to my lymph nodes.

So, on May 24th, 2008, I underwent this surgery. Laid out nekked and unconscious in front of a dozen or so medical students. At the time, I was more terrified of being unconscious than I was of having cancer. I have never been a huge fan of the whole anesthesia thing and I am, to this day, still traumatized by the falling asleep and the waking up parts of that surgery. They took about 14 lymph nodes and all 14 of them came back negative for cancer. The cancer on my cervix was completely removed. All that was left to do, was heal and recover from the surgery and I was good to go, baby holder and all. 

(Side note: the first time my parents and my husband met was at my bedside in the hospital with me all drugged up. AWKWARD.)

One of my absolute proudest lifetime achievements followed 3 months to the day after this surgery. Despite the fact that I wasn't able to exercise for the first 6 weeks after the surgery AND I suffered nerve damage in one of my legs during the surgery (it's all better now), I had committed to participating in the 2008 Accenture Chicago Triathlon shortly before my diagnosis. I could have deferred til the next year, but my plane ticket was bought, hotel reservations made, registration fees deducted from my bank account, and my buddy in CA had also committed and paid his cash...so I decided to just go for it.

The Chicago Triathlon consisted of a 1.5k swim in Lake Michigan (I added a few tenths of a k to this by swimming in zigzags with my messed up leg (doh)), a 40k (25.6 mile) bike ride around the city and a 10k (6.2 mile) run to the finish. It sucked for me. Sucked. But, you know what. I did it. Out of 8000-plus participants, I finished at about 8000. Close to last. Seriously. I am not just saying that to be dramatic. I was almost last. But, I finished. My body proved to carry me long after I thought it could. And I learned the power of mind over matter for sure that day. I thank the friends that supported me and until about a month ago...I still had all the voice mails from friends and family who called to wish me well and tell me how proud they were of me that day saved in my phone.

2009

2009 was a boring drama-free year for me health-wise. I continued to do triathlons and date my now hubby. We got engaged in September of 2009 and I also got to participate in the Nations Triathlon in Washington DC (same distances) in "pretty good" shape with a decent and respectable time for me. I was very happy.

In preparation for moving in with my fiance in 2010, I started purging my "stuff"...including my medical records. After a full year-plus of clear pap smears, I figured that chapter was closed. Into the trash it went. Doh.

2010

I continued to see my gynecological oncologist for pap smears every 6 months and continued to receive a clean bill of health in this arena. 

In April of 2010, while working many hours in a new position at work, adjusting to life with my fiance, planning my wedding and training for a sprint triathlon, I started having eye pain and headaches. I thought it was a sinus infection or stress, but when I woke up blind in one eye one morning, I knew I was dealing with something different. You can imagine how freaked out I was, but thankfully I have awesome friends who were with me through it all. I was admitted to Duke Hospital for 4 days on IV steroids and released into the world vision intact with a prescription for high-dose prednisone. 

During my stay, I was tested for EVERYTHING under the sun...from MS to NMO to Lyme disease to Bartinello...fungal infections, bacterial infections, viral infections, cancer....everything came back negative.

Thus began my battle with prednisone and all the crap it has done to my body. I won't go into the details about the emotional ups and downs and the getting fatter and fatter and the sweating. You can read about that here: This is Not a Pretty Post.

On August 21, 2010, I got married. Easily the BEST day of my life. Surrounded by everyone (save a few missing folks) who is important to myself and my husband in a beautiful location, with great food and music. Happiness abound. At the time, I was not thrilled with my growing body and chipmunk cheeks, but these things fell by the wayside as I celebrated the very best of life.

2011

As you all know, in 2011, my husband accepted a job in the Washington DC area. This was a big change for all of us (still is), but there are many great things about it. My husband moved in April of 2011 and I followed in June. In July, we moved into our current house. Around that time, I was having lower back pain and abdominal pain. I remember consulting girlfriends about the symptoms of UTIs. I was sure that is what I had. I saw a doctor. He prescribed meds to treat my UTI. They didn't work. The pain got worse. I had a CT scan. There were things there. A pelvic mass, inflamed lymph nodes, and a spot (or 2 or 3) on my liver. I had biopsies. I had a PET scan. I had another clean pap smear. I was sure all of this was related to my eye issue. Some mystery autoimmune disease plaguing the rest of my body. I never in a million quadrillion years expected to hear the words "It's cancer". I was blindsided. Shocked. 

So, here we are today. I still have a pretty pink and healthy cervix. But, inside I have little splotches of squamous cell carcinoma all over. The pain is gone and if it weren't for the chemotherapy, I don't think I would have any clear symptoms of illness (meaning...the chemo makes me feel like crap...but I don't have symptoms of liver malfunction or pain in my abdomen or back anymore). Cancer is a sneaky sonofabitch. Because the cancer has recurred and spread to an organ not adjacent to my cervix, it is considered Stage IVb cervical cancer. It's scary. Statistics are brutal, but MOST of the time I am sure that I will beat any negative statistics. I just don't think it's my time yet. 

There is a possibility that my eye issues are related to the cancer. There is something called paraneoplastic syndrome where certain cancers release certain proteins in the body that affect other systems, such as the neurological system. While I did not test positive for any KNOWN paraneoplastic responses, I may be affected my an unknown response and treatment of my cancer may in fact improve my eye issues! Yay!

ANYWAY...I have a scan coming up next week. I am anxious to the Nth degree. But, I suppose I should remind myself that worrying will not change a thing. It's either getting better or it's not. I would settle for stable. And there are still plenty of treatment options left. I just hope to not ravage my body too much in the process of trying to heal it! 

What I think you all should know about cervical cancer: 

1: It's sneaky, but early screening is still the best.

2: Not all HPV strains cause cervical cancer and not all cervical dysplasia becomes cancer. I think it is actually very common to have these, so don't freak out and jump to conclusions if you get an abnormal pap...I know it is hard, but chances are you won't end up like me. Still...get your annual exams!!

3: There doesn't seem to be a lot of awareness or research in treating advanced stages of cervical cancer...so join the cause and push for this. I think Annie is on top of this, so email her if you want info.

*My little medical glossary:

colposcopy: a medical diagnostic procedure to examine an illuminated, magnified view of the cervix and the tissues of the vagina and vulva.

LEEP: Loop Electrosurgical Excision Procedure (LEEP) uses a thin, low-voltage electrified wire loop to cut out abnormal tissue.

cone biopsy or conization:  an extensive form of a cervical biopsy is called a cone biopsy because a cone-shaped wedge of tissue is removed from the cervix and examined under a microscope. A cone biopsy removes abnormal tissue that is high in the cervical canal. A small amount of normal tissue around the cone-shaped wedge of abnormal tissue is also removed so that a margin free of abnormal cells is left in the cervix.

dysplasia:  the earliest form of pre-cancerous lesion.

 

As the Universe Unfolds...

I have been trying to open my eyes to the messages of the universe more lately. The things that cross my path that don't seem to just be "coincidence". Like how right before this cancer diagnosis, my husband and I moved to an area much closer to my family and childhood friends. An area where there is great medical care. Like how we found a house within 2 miles of an old college friend. And how my husband landed a job that pays enough that I can remain unemployed and focus on my health without worrying too much about finances. A job with good health insurance. Like how one of my childhood friends married into a family and circle of friends who has become pivotal in my emotional support. These things can't be just coincidence. I guess they could be...but I choose not to see it that way. I wonder how far back it goes...this way the universe has unfolded to meet so many of my basic needs as I face this battle. Without my husband, without my family nearby, without financial stability...this would be a whole different struggle.

Why the universe handed me cancer...that is still a mystery to me. Some people say that cancer is a gift (not that you would want to give it to anyone else). That it opens you up to life and fully living. That it gives you a wake up call to get it together before it's too late. I'm not there yet. I still have days when I say "why me". I still wonder what I have done wrong to be given this illness. What kind of karmic joke is this? Did I not get the message in 2008 with my first diagnosis, so now the universe needs to kick me harder? (Actually, that's possible...I really didn't get the message back then. I never questioned my chance of survival back then. I never wondered about the deeper meaning of my life. I just dealt with it and continued on my merry way.) Now...it's hard to escape it. I have to face whatever it is that the universe is trying to tell me.

I don't know why I have been dealt this card, but when it comes down to it, I am grateful that I drew this card and not my loved ones...though I don't know which would be harder...being the one fighting the battle or being the one watching someone I love fight the battle. Either way it's a crap-shoot.

There are things I struggle with daily now that I never did before. For one, I fear that if I accept that I could die from this...that I am inviting it to happen. I worry that if I try to deal with the fact that the cancer could spread more, I am somehow visualizing it into being. Every ache and pain is an invitation to question how many days I have left. It's impossible not to have doubts. It's impossible to stay positive and upbeat all the time. Impossible. Yet, when I let the doubt creep in, I tend to beat myself up about it. Where's my faith? Where's my optimism? How do I accept all outcomes without giving up the one I hope for? This sucks!

Anyway...I digress. Two weekends ago when we were visiting my brother-in-law and his family, we went to church. And a book was passed around for a women's book club/study group. And, I held it and read it's cover...One Thousand Gifts ~ A Dare to Live Fully Right Where You Are by Ann Voskamp. I decided that the book didn't cross my path by chance, but rather for a reason. I bought it. So did my lovely sister-in-law. And we both have been reading it and studying it and enjoying it. Of course, she read it in like one evening and I am still making my way through. But, I am enjoying "reading it together". Ann Voscamp, on a dare, starts a list of 1,000 things that make her happy. One thousand! One thousand things that bring her joy. Simple things. And in writing this list, she realizes how happy this list makes her. How counting her daily blessings makes her daily annoyances diminish and her blessing multiple. How naming these gifts in her life gives them more power to help her live more fully and pay attention to all the good things we often miss. God is in the details.

I wrote this whole post and babbled on and on just to get to this one point: I want to make my own list.

Where's My Manual?

I have been feeling rather uninspired...blog-wise...lately. I guess I don't have a lot to say, which isn't necessarily a bad thing. Things this month, or shall we say in 2012, have been a little out of routine thus far, and while I am  grateful, happy and appreciative of all the visitors and help I have had these past 3 weeks in my life, I am glad to be back in a little bit more of my own routine (IF you can even call what I do on a daily basis a "routine"...ha ha, but I am working on this). 

One thing that I have been trying to do this month, even in the midst of minor surgery, chemo, transfusions, travel, guests, etc. is to do some sort of daily devotional. A moment each day (usually in bed at night) where I read a devotional and think about what it means in my life. Journal about it. Or just meditate on it. I chose (at first) for some reason Rick Warren's daily devotionals for a Purpose-Driven Life. For those of you who don't know...Rick Warren is the leader of an evangelical megachurch and in all honesty, is probably a little over-the-top religious for my taste, but I had read portions of his book in the early 2000's and thought I would give his devotionals a shot.

Here is where the "at first" remark comes in. Turns out that I can't relate right now. Or my goals are a little different. His devotionals were all about acknowledging where you are, where you want to be, what you want to have in 10 years and the step-by-step plan you need to develop to get there....and all I could think was..."in 10 years, I want to be ALIVE". I can't think about career goals or certain life goals right now. All I want right now is to survive this. To be healthy and cancer-free. I want to make it to 2013 and beyond, much less 2022. There is no step-by-step plan for overcoming cancer. I can think about what I can do right now to make my life full and to make my chances better, but 10 years from now? I don't know if I have that much time...(and that took A LOT for me to say out loud...ugh). But, really, when I think about it...none of us do. None of us know when our number will be up. (Ugh...I still hate to think about any of this at all)!

So, anyway...the conundrum I came upon while trying to do these daily devotionals is not something new for me. I have always struggled with the "how do I live in the present, enjoy it, AND plan for the future"? How does one find the balance? Now, this age-old quandary feels even more significant to me.

My goal for tomorrow and for 10 years from now is to be a healthy, vibrant, active, fit, productive, successful and CANCER-FREE babe who is an inspiring and FUNNY writer, who manages life from a place of inner peace and who maintains a happy healthy marriage and lots of supportive and positive friendships. Some of these I do have now, some I can work towards. But, cancer-free...that I have no control over. And that is what is really hard for me. All I can do is do my best and have faith. (But, I sure do wish there was a step-by-step and proven-effective instructional manual for surviving cancer)!!

Anyway, for those wondering, my blood transfusion last Friday put me over the moon! I didn't feel it til Saturday. I even cried Friday night cause I was so upset that I still felt so bad. And even though I felt better Saturday, I think it took me til Monday to realize how good I actually felt.  I can take the stairs over and over. I can go for walks. I can clean and cook and just be a human being. It's awesome. Juicy blood and platelets are my friend. 

A Love Infusion

I just had a dream that I was carrying around two donor kidneys in a cooler...just in case...I needed them at some point. Yes, these are the kinds of dreams I have on a regular basis and this one isn't even THAT weird. In my dream, I started to wax philosophic about how these kidneys belonged to someone else and that someone else's juicy kidneys could save my life. Mind you...as far as I know, I don't need new kidneys, but hey...it was just a dream.

What I do need is more blood. Tomorrow, I get another blood transfusion. This time, 2 units of red blood cells and 2 units of platelets. This will take pretty much my whole day, which initally (ok currently) has me bummed out because...it's just so incovenient to be tied to a pole all day (ha) when there is so much living to be done. Alas, my energy is so low, I would probably be laying in bed at home anyway...but at least it would be MY bed. Sigh. At any rate, I AM glad to have this option. To be infused with juicy healthy life-enhancing blood. And I am super thankful to all the people who are able to and who take the time to donate their juicy blood for people like me. It does make a difference! If you donate, keep donating!! If you are one of those people who passes out or gets ill when donating...for God's sake...don't put yourself through that...but if you do...wow...I am SUPER EXTRA UBER grateful to you. But, don't feel guilty if you can't donate (I don't think I can), just find another way to be awesome.

The parallel of "Take. Drink. For this is the blood of Christ, taken for you" (I hope I got those words right. LOL) has not been lost on me. The idea that someone else's blood is entering my veins and giving me a renewed level of energy and fight and vitality is really pretty amazing. A gift really. A selfless gift from someone I don't even know. Thank you stranger...for your blood giveth me strength.

I got a gift in the mail today. One of many I have received over the past several months. (I would try to list the awesome gifts I have received here, but I am terrified that I would overlook someone and that would be awful because I am grateful for every gift I have received. You are all so amazing...or should I say a-mah-zing balls)! Anyway...it occurred to me that my friends and family are my lifeblood. Each time I am feeling down and out, someone shows up in one way or another and infuses me with love and support  and encouragement. A friend infusion. A love infusion. It renews my fight and my vitality and reminds me that...with friends, I am never ever alone. I am so beyond grateful for these gifts and gestures that keep coming my way. They are, in a way, the push I need some days to keep on believing (key the Journey music) and I honestly do not know how I would get by without them.

I have been pretty terrible about getting thank you cards out (I am working on that...New Year's resolution-wise), but please know that every kind word, text, email, phone call, visit, FB post, delivered package is appreciated and brings a smile to my face and an even bigger smile to my heart. It infuses me with a warm happy glow knowing that I have such awesome friends and family members. I can only hope to be half as awesome as all of you when someone I love is in need. Which reminds me...I think...in my little world of Vashni: cancer patient...I can sometimes forget that y'all have your own problems and obstacles (and sometimes certain people..eh hmm..will hide their troubles from me) so please forgive me if I have not been there to give you a love infusion when you needed it...and please give me a swift kick in the bum the next time it happens. I have so much love coming my way that I have plenty to pass on when needed. Unlike my not-so-appealing blood...my cup runneth over with love...let me pass it on to you if you need some.
 

That's my Jugular

Is it really halfway through the month of January already? Where does the time go? One of my "resolutions" was to blog more. We can see how well I have been keeping with my resolutions!

2012 has certainly been interesting so far. I started off with a blood transfusion on the 4th. This, in itself, was pretty unexciting. It is just like having chemotherapy except that instead of drugs, I was getting pure juicy red blood cells. Two pints to be exact. I had this done at Holy Cross Hospital in Silver Spring, MD and Holy Cross Moly did I get spoiled there. (Thank goodness because this endeavor took 5 hours). Really comfy chairs, my own TV (with like 30 stations), a personal heating/cooling system AND they brought us all free lunches! Suh-weet!!

In my naivity (and hopefulness), I had expected the blood transfusion to turn me into Wonder Woman. I had gotten it into my head that the addition of packed red blood cells would thrust me into a whole new level of energy and vitality. With my mother-in-law arriving 3 days post-transfusion, I hoped to clean the entire house, fix all the broken window treatments and towel racks (we seem to have a "wall" problem in our house), organize the garage, build bookshelves for our still-unpacked books, plant a garden, run a marathon, complete the Tour de France, deliver food to the hungry, and leap tall buildings in a single bound. Yeah. Notsomuch. I felt better. I think. But, mostly just normal.

The next day, I had my port "installation". This was fun. Not. I had thought my procedure was at 10am, so we arrived at 8:30am (standard arrival time for a 10am procedure). Turns out that the procedure was actually scheduled for 11am. And then, at 11am, there was a trauma emergency that took my place and ended up pushing my "installation" back until 2pm. Mind you, saving someone's life is more important than installing my port, but this was a fasting surgery, which means I hadn't eaten since dinner the night before. I was bored, uncomfortable, whiney and we all know how cranky this girl gets when she is hungry. It wasn't pretty, people. It wasn't pretty. Anyway...the installation went well, if you are into having your jugular pierced and a having a piece of plastic shoved under your skin while your face is covered in napkins and you are salivating over the thought of eating just about anything presented to you. But, it was over lickety split and I was soon back in recovery having my sandwich and soda and ready to move on. 

The next day was chemotherapy. While it was really not fun having the port accessed a day after the install, chemotherapy was definitely more tolerable with the port (as compared to having to sit with my arm completely still for hours at a time). I think I was still there for the same amount of time (people keep asking me if it went faster), but I was able to more freely move about and that totally rocked.

Ten days later, my port still hurts. Not a lot, but enough to annoy the heck out of me. Hopefully, with a break in chemo this week, it will get a chance to finish healing and I won't feel like such an alien. 


Anywho...that's all I've got for now. Time to go enjoy my family. Happy MLK Jr. Day, folks! 


Faith is taking the first step even when you don't see the whole staircase.~Martin Luther King, Jr. 

To Jamaica and Beyond...

Phew...there is a lot that has happened since my last blog post. I hope I can manage to keep this a "post" and not a novel!

~~JAMAICA~~

So...I am not gonna lie. Jamaica was warm and sunny and beautiful and easy and fun. The resort was wonderful. My family was awesome. Everyone had a fabulous time. Except there were times that I didn't. 

Turns out, I am not as secure and mature and stable and "together" as I had hoped to be. Turns out, that in a tropical paradise full of normal-looking people on a vacation, I looked and felt like a fat, bald cancer patient on vacation. I tried. I tried really hard to not care and to not be self-conscious. And it is perfectly possible that no one gave a flying whoop tee doo how big and fat and bald I was. But, there were times I just felt better hiding out in the room. Just being alone. For maybe the first time since this journey began, I felt very very different. And I was PISSED. Pissed at myself for allowing my insecurities to steal even a moment of my happiness while vacating. And pissed at the world for the simple fact that I have to go through any of this. I shake my chubby little fists at the world..."Why me"?!

Look out Jamaica...here we come! (FYI...most people on the plane looked at me with fear. They clearly seemed to think that I had something that was contagious and I was trying to protect THEM from me. One guy asked me a lot of questions about my health...I find I actually prefer this over the stares and fearful looks. God bless him.)

On Day 2 of Jamaica Vacation, we went river tubing and zip-lining. This was pretty much full of the awesome. It was a bit disorganized and maybe too laid back at times for us type-A Americans (I am referring to my husband here), but in the end, it was a really great experience and I would recommend it. It started out with a 45-minute drive through some scary-arse (OMG is there a gun on this van?) parts of Jamaica and then up a rugged, bumpy, gravelly and very narrow mountain road. I was impressed that we survived this part. I think this was all part of the "adventure" and thankfully I didn't poop my pants (it was touch and go there and I said a lot of "oh dear"s) because that would have made for a very unpleasant rest of the day.

 

River-tubing was relaxing and refreshing, with a few moments of excitement (as you can see from my expression above). Zip-lining on the other hand, for me, was exhausting with a few moments of sheer terror tossed in between. I WOULD (yes, would) recommend it to anyone. It's safe. It's cool. I am glad I tried it. But, seriously, I can live the rest of my life never doing it again. We hiked up a pretty significant trail to our first and highest platform. To most people, this hike was a breeze. To cancer patient, Vashni, with what turned out to be a seriously low level of red blood cells, this climb nearly destroyed me. I collapsed...somewhat dramatically... in a heap of heaving sweat at the top and missed most of the instruction and order that was being disseminated to us zippers. Perhaps...this is why I found less enjoyment in the flying through the air and running full-force into a tree 100 feet off the ground than the other zippers.  Regardless, I flew through the trees 3 times, cursed at my husband on each platform between each "flight" and eventually made it safely to the ground. One of the other zippers asked me if I liked it...my response "Meh".

Doesn't my husband look like the biggest most lovable dork? I love him.

The evenings on the trip are starting to blend together in my memory, but for the sake of this blog, let's just say...we got back from our adventure, showered, fell down the steps (yuppers...that's me...graceful as ever!), had dinner and then went to walk the beach. Only, on our way to the beach...the Sesame Street characters started performing on the main stage. I had some sort of very bizarre moment here. Watching Grover and Bert and Ernie and Elmo singing and dancing to Cotton Eye Joe...I became OVERCOME with emotion. I have NO IDEA what this was about, but something about Grover and Cotten Eye Joe broke me open in a way I haven't been in awhile. Within 5 minutes I found myself in a bathroom stall crying and begging and pleading to God to let me live. To let me understand why this is happening to me. To give me the strength to beat this. To let me be open to whatever the universe is trying to say to me while in Jamaica and to see and hear the "angels" that are among us and among the vacationers in Jamaica. I begged God to allow this trip to restore me and replenish my "fight". I came home needing a blood transfusion and I am pretty sure I didn't have any major spiritual epiphanies while in Jamaica, but that conversation I had with God in the bathroom stall was one of the most real raw moments I have had in a long time. I hope it doesn't just mean that I am crazy in the head. I hope he heard me and I hope none of the other restroom-goers did. 

The rest of the trip really is a blur. I had my emotional ups and downs. But, I also had fun. I watched my husband sing for the first time ever (I laughed so hard I nearly peed my pants), watched my step-daughter and husband particpate in some sort of dance-off, drank boat drinks, ate ice cream, got my chubby-arse stuck on the water slides, met Mama Claire's twin sister (perhaps my Jamaican angel encounter) during the martini and chocolate party, watched my husband traverse 4 floors, a hallway and half a walkway with his fly down and shirt tail hanging out...hee hee hee. It was a blast. 

~~AND BEYOND~~

By the time we arrived back in Baltimore, I was literally a walking zombie. I hurt everywhere. My entire spine throbbed and I felt like walking was nearly impossible. My heartrate soared at the slightest activity and I was gasping for breath just walking 5 feet. I was very scared and so I pretty much stayed in bed for 2 days and monitored my own vital signs to make sure I was still alive. Ha ha. 

Guess what...I am still alive!! Turns out my red blood cell and platelet counts are quite low. Blood transfusion low. This is all part of chemo...but new to me. Seems that I was pretty spoiled during my first rounds of chemo. I tolerated it well. I felt good. I could still go about my business like it was no one's business. I thought I was fatigued, but now I know...I was so NOT fatigued. Since starting my new cocktail...all those things they tell you about in cancer books about dealing with chemo and the side effects...all those things my fellow cancer surviviors warned me about...NOW I get it. I FEEL like a cancer patient now and it pretty much sucks. But, I know that this destruction of my red blood cells must mean that those bad cancer cells are getting destroyed too. Knowing why I was feeling so bad and that there is a "solution" and it doesn't mean I am at an immediate risk of keeling over has definitely renewed my "fight". It's gonna be a-ok. My primary care doctor today kept talking about when I am "in remission". I like that he talks this way. Like it's a FACT, not just a possibility. A FACT. 

So...tomorrow I get a blood transfusion. A boost of someone else's juicy oxygen-filled red blood cells and will hopefully feel a lot better (I already feel a bit better). Thursday, comes the port. I keep referring to this as my "port intsallation" as if I am a machine or something. Maybe I am. Hmm. Friday is chemo. My body will go through the wringer this week. But, I will come out the other side. I will. Big, fat and bald....but ALIVE. 

My #1 resolution for 2012: To SURVIVE and to THRIVE!!