Hello September… please be better than August!

Hi Everyone! Happy September!

Thank you for your concern when I only update once a month. I don’t want this blog to bore you with too many insignificant updates, so I’ve focused on “less is more”, posting my relevant monthly cancer stats along with some interesting personal life tidbits. Trust me :) I could post daily, weekly for sure, as so much happens in my life!

My sweet hubby Jim brought these to help me feel better!

Unfortunately and mysteriously to me, August was a month of merciless “chew and poo”! Ugh, “John” became my premier destination (sorry to those that the flinch at my too much body-biological detail reporting). I appreciate the personal details my Myeloma “blog-o-sphere” pals write in their blogs, as it is very helpful to read about other’s diagnoses, treatments, medications, blood work statistics, reactions and side effects, life’s challenges, etc, related to Myeloma.

Not sure why August was worse than some other months? I keep thinking about how I tolerated huge doses of Dexamethasone steroids during my initial treatment in early 2010. For 6 months I took 40mg Dex DAILY, 4 days on, 4 days off continuously!!! My dosage of Revlimid was the same too, 10mg daily, 21 days on, 7 days off. For sure I had all kinds of crazy side effects back then, but not the extreme “volcanic (lower) GI eruptions” I have now! My oncologists have confirmed that my entire physiology is changed, and my GI system is definitely different since my stem cell transplant.
As I reflect back and connect the dots, I realize how differently my treatment affects me now, since Myeloma came roaring back last year.

So with my new “chew and poo” lifestyle, I have become rather “home bound”. Haven’t been to my college office in weeks. I was very sad to miss my 32nd/29th “Fall Opening Day”. Thank goodness I can still help students online. I think about how fortunate I am under these circumstances, as Jim has created such natural beauty in our backyard, and I am never without amusement and entertainment here. From all the animal residents and my human family’s shenanigans, there is never a dull moment!  Click here for the “Triplets”, baby sparrows update!

But however beautiful and entertaining my home is, I did suffer physiologically quite a lot this month. And basically every month from my meds, or perhaps it’s side effects from IGA myeloma itself? Most of my current life is centered around trying to eat to get proper nutrients in my system to fight stupid cancer, and then wondering if it will “stick”. Most of the time, no…

I like the combo versions the best! Mixed veggies and fruits

I eat what would be considered to most, really bland and boring. Baby food, Ensure, plain baked potatoes, Cream of Wheat, toast, and when I think I’m ok, I add in salad, veggies, fruits, protein, etc. I avoid acidic, spicy, onions, garlic, no greasy foods, nothing heavy, etc. There were days this month even bland saltine crackers didn’t stick. But each day, regardless of the impending cramps and volcanic reactions, I would try to eat. There were days when I was in the bathroom every other hour. There were days I thought this would never end. There were days when I understood why some eventually decide the “treatment is worse than the disease”. But I also know, what I am going through is not as rough as so many (or what I went through when hospitalized for a month for my stem cell transplant) …so I carry on and hope for the best each day.

Here’s my most recent statistics:

WBC’s =  2.8 (4.0-11 scale) too low, thus very susceptible to everyone’s cooties
ANC (Absolute Neutrophils Count) =  1.3 (1.8-7.7 x 1000/mcL) eekk! too low

M-Protein/M-Spike=   0.70 (normal = 0.0) too high
Beta Globulin Electrophoresis=  1.27 (0.65-1.10 scale) high
Gamma Globulin Electrophoresis=  0.35 (0.70-1.60 scale) low
Protein Electrophoresis= (always) Abnormal

IGA=  979  (70-400 scale) down a speck (I’m “high risk” IgA Myeloma)
IGG=  279  (700-1600 scale) too low
IGM=   17  (40-230 scale) low

And so I carry on. One day at a time, monthly blood work to monthly results. I’ve felt a bit better the last few days, as I’m on a little medication break. The war starts up again on Wednesday with Rev, and will slam me more after I take my Dex. But if these powerful chemicals are significantly punching Myeloma in the cellular gut, as I get kicked in the GI gut, I’ll never quit!

Such a spectacular sunset, last day of August

Have a wonderful September, and thanks for reading and your on going support!

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!

Some interesting reading:

I should have stayed on Revlimid maintenance!

Cancer Cases Among 9/11 Early Responders Continue to Grow

Remembering Arnold Goodman- The myeloma community has lost a courageous and inspiring soul

Remembering Stephen Kramer- Another valued voice of the myeloma community has been lost.

Goldman Sachs Former Lead Director Dies of Multiple Myeloma

(MMRF) Saddened by Loss of Dear Friend and Board Member Edward Jay Phillips

Who knew these famous people died from Myeloma!

Multiple myeloma is incurable