Category Archives: recap

Connect the Dots.

I’m very late in updating. However, the following words should give you an idea of what’s been happening the past 1 1/2 years:

shock
despair
frustration
more chemo
hospital stays
Skype’s with family
dazed and confuse
reclusive
living on medicines
steady
Monk, I was
City of Hope
more chemo & radiation
stem cell transplant
New Normal
recovery
relocate
lost
double life
frustration
old
pain
despair
at peace
at war
constant
grounded
here
Be

Cryptic, as always. Unabridged in time. Thanks for listening.

[Happy] One Year Anniversary

You can pretty much put whatever word or emotion you’d like in the bracket. For me, it is the day–one year ago–I had succumb to non-Hodgkin’s Lymphoma. I plugged away as far as my body could take and finally, it had enough. “Running on fumes,” was one of the things I use to say. I didn’t think literally.

However, today is Easter, 2013. No longer in the hospital or gasping for each breath, it feels good. I still push myself; having just finished round #3 (yes, I haven’t even had a chance to talk about the first two), this time around, I won’t let the nausea nor pain put me in a Cullen state–yes, Twilight Cullen.

This is my mini-marathon. The last leg is the hardest. Fortunately, as a former sprinter, I’m still a quick study. More specifically, my finish line is an autologous stem cell transplant. Let me tell you, I am frighten. I get cabin fever, quick. Fear of the transplant itself? The needles, the never ending bags of chemo, hydration. But really, I’ll get over it. 🙂 I know I’ll manage.

Lastly, my heart and soul goes out to those who are desperately seeking a donor–a Match. If all who read this can do one thing for me, please share this. A Match is what I seek for Emily Sun, for Kevin Weston and the many others. Thank you.

Cancer, Depression & Faith. Oh My!

What can I say? Head on collision with a train at full speed does not look pretty, but the results are in. Almost. Cancer brought forth amazing opportunities laid before me as well as some not so nice ones too. Simply put, Pandora’s Box was opened. We did not know it even existed. Yet, it wreck havoc and along the way, I found puzzle pieces of Me.

Depression is a funny thing. It hides behind many faces and seem to blend in nicely with the normal–sometimes. Then, a sudden trigger of memory–whether you see it, been there, smell it or just sense it–floods your every being, possibly crippling you to submit to its darkest caverns. You replay your whole entire life, thinking somewhere, I made a really big mistake and this is payback. Or simply, I just deserve it. [Karma can be a b!tch sometimes.] Yes, folks, I have had this battle for quite some time (or some form of it). Cancer brought it center stage for me to face one last time. I say it is my ‘last time’ because this time, it is different. No more living in fear of how people will see me. No more living in fear of when this will cripple me again. No more “losing it.” No more. Don’t get me wrong. This is not necessarily an eradication of depression, but management. Like cancer, it is part of me. I am chalking this up as another life skill acquired along the way. As a familiar cliche goes, “If you can’t beat them, join ’em.”

This is where Faith steps in to help Cancer shed light on Depression. I am not a Believer (aka God) nor am I an atheist. I cannot support nor condone any one particular religion, faith, belief, etc. Why? I am a believer of Fair & Just. They hold no religious bounds for me. As we all continuously sing of individual uniqueness, each one of us has to be content and at peace with where we are–even at our lowest points. It was very hard for me during this time ( I can only imagine the strain put on my family & friends). I struggled daily, wondering how can I still endure any more pain from my depression, let alone the [slow] recovery of gaining strength to tackle daily obligations. Even worse, how can it come back with a vengeance like this? With everything that I have, I was in the ‘perfect place’–my knight in shining armor, my little princess and prince. Heck, I even had that dog, cat and mini-van scenario covered. The white picket fence ranch was coming. Yet, I was miserable, angry and still, sad. Crappingly sad.

But, this derailment was long enough for me to say, “No more. It’s time to move forward.” My faith lies within me. My faith lies within those who love and support me. Above all, my faith is still with Humanity. I believe we are all here to be better–for good or for bad. Some of us will live a life of suffering, while others will live like kings. At the end of the day, we grow a little. I say, I have grown quite a bit the last year. All I wish for everyone in this world is to grow a little.

I still look at my NHL as the greatest opportunity given to me (Heh, unlike the other NHL going on this season…we won’t talk about it because they are still talking about it–instead of playing. >,< Shhh). As a little girl, I held on to a few beliefs that, frankly, I do not know why I had forgotten or let go of. Some may find it silly and downright weird superstition. Whatever you call it, discovering them this past year have been the most delight. The best part, I was able to reconnect and reaffirm with them. Even grander, I was given a chance to create a stronger belief foundation that I have longed for. Like I said before, I have the perfect family any woman can ask for. I know where I want to be; it is time to get there.

In light of all that is, remission (as said before) is not what you think. Currently, we are waiting on second opinion of our options battling my cancer. Yes, I still have cancer. Long story short, the theory is I had indolent Lymphoma which flared up to aggressive and was fought over the summer. Now, we’re back to the indolent. Options laid out were to continue Rituxan once every 3 months for a couple of years and do a biopsy then for a better idea. Or do what I call, “the hurry up and wait” game; I choose not of this because it makes no sense. Lastly, bone marrow transplant would give me a few years as a renewed person; I choose not of this as well because frankly, I’m tired of being in the hospital/under the knife/drugged/etc. I have 2 kids. I know where I want to be. (Hmm, sounds familiar, eh?) I have not looked into any clinical trials because writing this blog took me a span of a few days. So Googling will only make me less of a dutiful housewife and crazy mom than I already am. [It still beats 9-5, folks.]

So, as I just griped. I shall end it here. The kitchen is beckoning me to destroy–ahem, cook in it. 🙂 Dinner is calling…

Adieu and to you, a wonderful week.

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.

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.