The Story of My Life…

I will keep this short. Cancer was a deer in the headlight look. Remission is a head-on collision with a locomotive; Semi-conscious, I’m in the emergency room, waiting for my turn . Leyman terms: My latest biopsy showed up inconclusive. IN-CON-CLU-SIVE. It’s a big fat “I don’t know” in my face. Guess what our next step is? Another biopsy. Yes, I get to do it AGAIN because my bone/marrow won’t give the experts an inkling of data to reassure my unforgiving frame of mind.

I won’t lie. It is rough. I was never a fan of rocky road ice cream, I’m certainly not thrilled with the bumps and bruises we are going through. The biggest hurdle is finding the right help and support you need. I am not saying there is no offer of help and such; it’s been tremendous. However, when you–yourself–have never experienced this before, the offers of help laid before you become indecipherable and confusing.

So now, the next step in the game plan is to do another biopsy. Hopefully from there, we can finally move onto Plan B–what to do when this comes back. In the meantime, we’re still waiting on the current resident to move on out and let my body be.

Life Happens…

Then, you are told the magic word, ‘Remission.’

Ladies & Gents out there, I am still here.  As Ferris Bueller once said, ‘Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.’

Yep, I almost missed it. But Cancer came and paid me a visit. And now, the job’s done.

~ ~ ~   ~ ~ ~   ~ ~ ~

I have been spending a bit more time with the family and just remembering the day-to-day things I had missed while ill. It was also a chance for me to have some clarity. This will explain partially why I was MIA from blogging since June.

The other part came from what I now call as my botched procedure (TBL: to be linked). Additionally, the chemotherapy regiment was starting to take a physical toll on my body while maintaining whatever motherly duties I was afforded the pleasure of doing. By the time it was all said and done, another round of spinal chemo, the remainder of my treatment, and it became August.

While Cancer put me in a medical hiatus, Life never stopped. Our 1st grader is now in 2nd grade. Our younger one is over 1 and thinks everything is Mt. Everest to conquer. As I mentioned earlier, a bit more clarity came out of this little detour (quite the detour, I might say) and I am now more determine to see some of these ideas become reality.

I may be in remission but the real journey starts now.

Details: Neulasta shot aftermath or breakthrough pains

This is a belated entry, however, I feel it is important we all know what this is all about. There are folks out there that are wondering, “Am I the only one going through this?” We are talking about pain, specifically pain from the Nuelesta shot and breakthrough pains.

The Nuelesta shot insures your immune system can battle the onset of simple illnesses you may encounter. (Who wants to be bedridden or develop cabin fever?) With any medication, there are downsides to them and this was no exception. As previous posts revealed, it becomes a pain management regiment. You have to wait it out. You lay there helplessly at points; you just want it to end.

The first experience with this shot was more than unpleasant, it was downright freakishly scary. [Remember how I mentioned my fascination for the human mind, here goes…] You are told to have this shot pretty much 24 hours after your chemo to help ‘reboot’ your white blood cells to ensure they correctly combat the bad stuff. The shot itself is a sore arm for a day. Then, chemo fatigue kicks in and on day 3, your life (and those around you) is put on hold–literally. It reminds me of an episode from ‘Tales From The Crypt’; A woman wanted eternal beauty for the public to only be showcased in a macabre musical–with her immobile and guts exposed as she is tearfully wheeled on to center stage. No guts shown here, though I was tearful and immobile, feeling every bone being crushed like Lay’s potato chips. The worse place to feel this was the nasal passage. All the pain medication I had helped little. No one can do anything except sit and wait. This lasted for three days.

At the end, your body is physically worn out from the cancer, chemo in your system and feeling beaten up like the soldier from Full Metal Jacket.

The bright side is, with the support and guidance from our nurse advocate, I was able to avoid this with the following solution:

Claritin-D and Alleve (220 mg) [either 12 or 24 hrs should work.]

NOTE: Specific brand is mandatory. It is not guaranteed that everyone will benefit, but it is worth the try.

I took this the day I am getting the shot and continue on till day 3 of the pain (day 7 from chemo day). The difference is night and day. I function!

********** ********** ********** ********** **********

Breakthrough pains are so much fun. They are like a roller coaster ride. You don’t always know when it starts, but you know you’re on a ride. The easier ones are those you can actually feel coming. You are warned and you just brace yourself. There are some that just comes without the warning and again, you brace yourself (and hope you’re not driving or carrying fragile things). The worse ones, however, are the ‘phantom pains.’ These are the sneaky ones and literally brings you to your knees before you know it. There are no bracing for this one, you are physically lifeless at the end of it. People can see the change–zero energy. Rest is the only option.

The bright side is, it does subside and you notice very little, even none, as you continue your chemo treatments. Pain management becomes a routine. Your body tolerates and moves forward.

Superwoman

This is the first week where I have been feeling almost like myself before cancer. The medications, aches and exhaustion reminds me otherwise.

I will keep this short since I do have drafts of other blog entries to write: I am fine, for now. Trying to play catch up and organizing things before the next chemotherapy, as well, my kids’ birthdays are in the middle of all this. (Disneyland, you better make me happy.) There have been events in the past few weeks I will go into detail as soon as I can. A 1-year old loves to explore and I must tend to that first. As well, rest has become a mandatory requirement for me if I want to “get well.”

Thank you for your patience. I hope all had some wonderful holidays along the way. Who would have thought that summer is already here and how I wish for my 1st grader to have another 2 more weeks of school. Peace out.

Sorry…

Back logged on blog entries. Been busy in and out of hospitals, consciousness and pain. Three weeks of silence makes it only worrisome or dandy as daisies. It was both. Then sudden derailment, but we are going to get through this. As Gloria Gaynor belts out (as all karaokeans sings along), “I will survive!”  [Cue strings section]

Recap of May-Week #3

Mother’s Day was really nice. I was starting to feel good again and being less tired. It was a quiet day filled with the kids playing and my dear husband cooking us food throughout the day. Even had a nice breakfast in bed surprise and felt like Christmas when I got downstairs. This week gauged where I was in relations to pre-cancer. Rightfully, it reminded me when I had to rest.

I was able to enjoy the first part of the week relatively pain free. Then, the lovely phantom pains kicked in followed by more random pains. They are bearable, so, the week continued on relatively normal.

Fatigue was the biggest obstacle, which taken care by frequent naps, was no problem. Otherwise, I was pretty much incoherent by dinner time. (Yes, I did manage some late night communications; how I did it, I don’t recall…)

Blood is still holding steady; always a good sign. Chemo is scheduled for next week and am already feeling the anxiety and excitement. There is also talk of another chemotherapy that’s somewhat the same procedure as a spinal tap. [Future post will tell you all the gory details of my experience with the spinal tap.]

Speaking of incoherent mind, this brain is quickly fading and nervous system is misfiring. It is time for me to sleep the day away…

Prelude to the cancer…

By now, you are wondering “How? Why?”. Looking back, cancer’s been in me since September 2011. I was constantly tired and not feeling myself at times. I was also starting to ache with arthritis-like pains. We took it as part of recovering from pregnancy #2. Our boy was born in June and figured it wouldn’t last too long; I would get my strength back.

However, it aggressively attacked my bones in January. I finally went to the ER in March after spending the day before Costco shopping. (Yes, folks, I was shopping–full load.) I had spent the week prior doing my usual business, running errands, kids and et al. while taking longer and longer breaks in between them and eventually, gasping for every breath I took to get through the day. It was a Tuesday morning when I called my family and asked if they can come and help me. The hospital was close by, but my Self was done. I no longer wanted to deal with it alone; I could no longer help myself.

Hindsight, my family saw something was seriously wrong. No color to my face. I would stop every few steps to catch my breath and they patiently waited for me while I packed myself for ER. My loving husband had also returned home from work that day, even though I had told him things would be fine. (I’m a lousy liar.) At the hospital, things seemed to quickly spiral down to an even more urgent need to tend to me. One nurse who saw me dubbed me, “Hemoglobin 5.” What she and all of us didn’t know, I was really hemoglobin 3.7. (To give you a better sense of where I was at, normal, healthy people run around 11-14.) I had lost alot of blood. The medical staff had a million questions for me and eventually were baffled as to: 1) How I managed to live my life at 3.7, 2) Where/how was I losing the blood and 3) What was the cause of this???

A blood transfusion got me back to my anemic level and by week’s end, a bone marrow biopsy had revealed the true cause of my illness. Stage IV, aggressive B-cell lymphoma. The suspense was over.

April existed for cancer. It became an almost daily visit to some doctor or perform some procedure prior to my chemotherapy regiment. I wanted April to go away. We hit a snag with one of the procedures, the Spinal tap. Migraine headaches are minor compared to spinal headaches. This also bumped up the chemo treatment early and before I knew it, I was headache-free, start of chemotherapy #1 and delayed port insert. I think I had an out-of-body experience by this point. It was fast lane all over again, but with cancer.

Details: Spinal tap hell

This week was a week never to be forgotten. It’s not 9/11 memorial type, but it’s worth noting that no one should endure this pain.

Personally, I enjoy psychology. Human mind intrigues me. The spinal tap headache, did not. It was a procedure to test for possible brain tumor. I really did not care, only the fact I will have a needle in my spine.

Needle + Spine = Epidural + Baby

The reward here was not as tangible as a baby and I did not feel very compelled to do it. We did it for precautionary steps. Prepare for the worst. The side effects of this procedure was “rare” and headaches would be a minor inconvenience. Unfortunately, my recovery time was too short, which led to this nasty obstacle. It turned out to be a major inconvenience, leaving me bedridden for a few days, hidden away in our darken bedroom. My head hurt a lot. My brain itself felt like a deflated ball, at worst, a swooshing goop of jello slowly draining out of my head. Everything bothered me and, like a migraine, I couldn’t stand the light nor any noise the most. Driving around town was utterly miserable.

My rule of thumb with any sickness befallen to me was to wait 3 days. It should go away in 3 days. I was sadly mistaken. It was 4 days of constant, unimaginable pain. I thought I was going insane. I was told that the brain can only handle one pain at a time with the body. There were more than one pain going on neck up; The skin became uncomfortable, the skull was hurting, brain like jello, the eyes burned to see any light and ears were pounding with pressure.

In the end, I was admitted to the hospital to remedy it. It was a quick procedure. Another needle in the spine, draw blood from a vein, put some blood back into the spine and viola! Headache be gone! The doctor kept asking if I was feeling alright and all I could do was whiplash my head in excitement. Amazing! A drop of my blood fixes psychosis.

Duly noted.

Funny things on the way to hair loss

Like David Letterman has his Top 10 list of whatever, this is my list of funny things that happen on the way to hair loss:

  • I grab for my hairband whenever I see it or think I should put my hair up.
  • I wash my face carefully so I don’t wet my hair/line.
  • Since there’s less competition up there, some of the stubs have grown 1/2″ tall!
  • I was told I have the classic man’s hair loss pattern. [Perhaps it’s universal?]
  • I was asked if I had dyed my hair recently. [The stubs look lighter.]

So there you have it. It’s not much. But I’m sure more will come as I travel through this adventurous journey. 😛

Almost Normal Today

I have to say, today was the first I have ever felt like a normal person. I was able to have a day where I almost did everything I would have done before cancer.  I was pretty darn excited. There were a couple of times I had to catch my breath, but it was okay. I was able to rest as well which was very nice, thanks to my dear husband. My blood draw got moved to today in case I ever need a transfusion, it’s all done within the work week. Random note: This medical facility reminds me of college. It’s busy as a beehive Monday through Thursday. Friday? Ghost town. How silly is that. 😛

I also got good news of my blood still being stable: Hemoglobin 9 and my platelets still look lovely! Can’t ask for more. 🙂 If my energy is like it is today, this week will be a good week for me to catch up on the things I had missed the last couple of months. Yikes! If I’m really daring, I may try to plan our meals again… O.0

Today. Was a good day. 😀