I'll Praise You In The Storm

Annnnnnnd,I'm back (again) after 5months, 4 of which were spent being an in-patient at 3 different hospitals.  For those who may have stumbled their way into this blog I awoke in the early hours of November 7th, 2018 feeling as if I was dying. I called 911 for help because as it turned out I was nearer to death than life. I'd gone into hepatic encephalopathy; a fancy term for ammonia which needed to leave my body had instead accumulated to dangerous levels and was poisoning my body including my brain. I was in sepsis as well. I was spiritually prepared to go to Heaven, but that's not what God had planned. I went through several surgical procedures, draining fluids from my abdomen and even had physical therapy so I could sit up and walk again.  And then on March 13th, 2019 I finally came back to my sweet little house.

I've been making the round of doctors since then primary care, gastroenterologist, urologist, heart specialist, hematologist, liver specialist; you get the picture. But yesterday I had a PET scan and today I saw the hematologist again because he's also an oncology doctor.

The test results show I still have cancer.....but wait, here's what I consider an "ONLY God" maneuver.. the monster hasn't grown, nor has it spread at all!!! I was diagnosed in October 2018 and it hasn't spread and that's astounding since I've been dealing with all the other health issues without any chemo!

Would I have liked to hear there was nothing there? Of course, but I'm taking all the miracles God has blessed me with throughout my life. God has kept me in His care since I was just a toddler and I am beyond grateful.

Treatment will start in about 3 weeks.  I'll do chemo once every 3 weeks with at least 6 treatments. So baring anything unforeseen I should be finished by sometime in September.

Dear Lord,

I praise You for the blessings You keep bestowing upon me. I know that You are with me every moment of my life and I'm grateful because I can't do any of this without You. I love You, Lord.

In Jesus name, Amen,

Birthday Presence

I don't have a clue how many people have November 2nd, as his/her birthday but along with a niece and a great-niece, it's my birthday, too.  As my mom used to say, " what are the odds of me having a daughter, a grand-daughter and a great-grand-daughter share a birthday?  Maybe I should buy a lottery ticket."  Personally, I think it's just another of those creative oddities that seems to define our family and makes me grin at God's sense of humor. As for my darling nieces, I pray your birthday was filled with love and laughter.

And what about moi?  My birthday was filled with presence, His presence. He gave me the gift of a brand new day filled with endless choices to make and I chose to keep my appointment with my new oncology doctor. Now, I realize someone might find that a totally depressing thing to do on ones' birthday but for me not knowing test results would be truly depressing. Besides, I can't properly fight this monster without knowing the extent of its' invasion on my turf.

Here are the test results:
Heart and Lungs   good
Spleen                   enlarged but functioning
Liver                     end stage cirrhosis due to previous chemotherapy need to monitor
Kidneys                 good
Bladder                radiation damaged but functioning
Upper GI              affected by liver damage and hiatal hernia but functioning
Lower GI              radiation damaged but functioning
Bone Structure     osteoporosis due to radiation and arthritis due to bone fractures

 Blood Results      No diabetes, No cholesterol issues, Blood counts were in acceptable
                             ranges, but I am anemic and need to get an iron infusion asap

CT Scan (drum-roll, please) Clearly shows NO further invasion of the monster!!!

On October 31st, a Smart Port was implanted in my chest.  Although it won't entirely keep me from having to be stuck with needles elsewhere it will reduce those times.  Right now my chest is still healing from this device being implanted and once again I'm trying to get used to this gagging feeling in my throat because there's a tube connecting the port to my carotid artery.  November 15th is when my chemo cocktails will begin sailing into this port. (yes, pun intended)

 Even without balloons or cake and ice cream this birthday was spectacular! The gift of knowing the monster is contained and only consists of two tumors and the lab and CT results being in my favor brought tears of joy to my eyes..  I was in critical conditional before the three previous battles I've had with this monster and even though I emerged from those encounters battered and bruised the fact remains the monster did not emerge.  This time I've had five years to work towards physically healing from those battle wounds; more importantly, my faith and trust in The Lord is even stronger now.

Thank You, Lord, for Your presence on my birthday and every day!

Simply Sunday

Okay, so here's a little 'fun fact' concerning hair......it's taken me many years after chemo (2010/2011) to get this hair to make me smile.  This hair will soon be gone; but, hey, small price to pay for ridding my body of the monster hanging out inside of me. It's totally maddening to lose hair which includes more than the obvious....eyebrows, eyelashes and then there are those nose hairs.  Yup, nose hairs, they're part of our bodies and they have a significant duty to perform by keeping a bunch of dirt, dust and bacteria out of us. They also help to hold moisture inside.  Pretty amazing that what many folks think of as yucky is actually helping us to stay healthier.  I missed my nose hairs last time, without over the counter products I would have had even more nosebleeds than I already had. So much fun to look forward to, maybe instead of chemo I could go to that big lake in our area and just wash myself in it 7 times like God, through His prophet Elisha, told Naaman to do rid himself leprosy? (Look in 2 Kings chapter 5) Because that would eliminate hair loss and any other whamies chemo can inflict on a body.  I'm listening, God, but what I'm hearing is, "Please just do the chemo and I'll get you through it."

I trust Him to do what He says He will.  The sun is out here today I think I'll go soak in some of that and thank God for His unending love for me.

Dear Lord, Let Your love for me shine so brightly that those wandering in dark places see it enough to reach Your waiting, open arms!  Thank You for blessing me beyond measure and giving me a peace that passes all understanding as I make my way through this difficult journey.    In Jesus name, Amen.

After Five Years

Well, hello to you.....those who've been here before and any newcomers.  Right up front let me say this:  I am a Bible believing, born-again Christian and if you're not, this little blog of mine isn't here to whoop anyone about their unbelief (and I'd appreciate you not being cantankerous that I do believe). This little blog is about the journey in life I'm currently experiencing.  Mostly that means I'm writing about my front-line adventures with cancer, which I refer to as 'my monster'.  So, let's get on with the journey!

The archives of my journey go back to 2009, for newcomers it may be helpful to start there as it will give you information you might need or find of use, plus it will reveal a bit of myself to you.

Before I begin what's going on I ask you to be patient for a few more moments.

The remainder of whatever entries I add to this blog are dedicated to the woman who was my near-daily go-to person as I battled my monster in 2009, 2010-2011 and again in 2013. She prayed with and for me she let me cry and sometimes cried with me, at the times I started to whine or balk at what was happening she lovingly scolded me. Mostly, she simply showered me with love....a mother's love for her hurting child and a mother's joy for God's healing that child.

Thank you, God, for blessing my life with Dorothy ('Dee') Ann.  I miss her being here but am overjoyed that since August 21, 2018 she's with You!

And now a condensed recap:

Initially diagnosed July 29, 2009 with Stage 4B cervical cancer, declared in remission December 28, 2009

Late November 2010 diagnosed Stage 1 cervical cancer, declared in remission late June 2011

March 2013 diagnosed Stage 2 cervical cancer, declared in remission August 2013

From November 2008 when we now know the monster began to grow so by the time I was actually diagnosed in 2009 I was already in physically critical condition.  The massive radiation treatments, internally and externally in 2009 truly, unwittingly, set the stage for the medical problems I've endured ever since that time. The hardcore chemo treatments of 2010 merely added to those issues, then in 2013, just as my team of specialists began to get things under some control I went through six weeks of radiation which killed the cancer but caused my interior extensive burns which nearly killed me.

Yes, the treatments effectively killed the monsters, but the treatments also made me a poster child for side-effects; what my body has been through(and I still daily cope with 'new normals') is simultaneously horrendous and miraculous of God's grace in my life.  Having been monster-free during the past 5 years has afforded me the opportunity to become physically healthier even though I still have serious medical issues to cope with.  These 5 years have been a blessing I am thankful for.......because the monster is back and within the next 2 weeks I'll be starting chemo....due the previous damages of treatments I'm not able to have radiation and at least at this time surgery is out of the question.

And so a new journey; I've even got a new oncologist (more about that in the next post) and in those 5 years God has revealed lots of fancy DNA Genomics now being utilized in monster riddance.

God help me to focus on Your truths instead of the trials. Help me to give thanks instead of giving in to fears.  Help me to choose joy instead of anger.  Help me to trust in Your power instead of my plan.  Help me to elevate Your name instead of my own.

The Journey Continues

Yes, it's been waaaaaaaaay too long between posts in here and while I ought to be apologetic the truth is it's been taking every ounce of strength just to get through each day; one hour at a time.  I keep asking folks how come all I see in the news or on tv..even the movies, are those who've been through treatment and now are off globe-trotting or at the very least joining marathons, back to work and just living seemingly as if cancer had never been part of their lives?  Where are those who've gone through the fire and now are still crispy or at least still smoldering? (I'm in that second group)  Cuz really, I know I can't be the only one...right??????  Oh well, that aside, read on for what's up.

Last year at this time I was very sick, getting blood transfusions consistently due to radiation damages to my colon, in serious pain and then at the end of November finding out the monster had returned.  I was in such terrible physical condition my new oncologist couldn't even give me full chemo treatments; she said doing so would most likely kill me.  It turned out even the reduced dosages from the very first treatment sent me nearly home to Jesus; at one point I was so sick I did ask Him to just take me.  But, of course He denied that request and instead carried me through that terrible time.  In fact He carries me through each moment of every day and I know without Him nothing else matters; nothing.  This doesn't take the difficulties away; He makes them bearable.

So here we are, it's November again and while this journey is far from over I'm pleased to report the following:
1.  All narcotic meds are history!  There was no weaning off time, it was "cold turkey".  YUCK!  Two weeks of feeling as if my skin was being turned inside out was sooooooooooo much fun!

2.  I've had ZERO blood transfusions since the last week in March!  (As if 84 weren't enough, already)

3.  Chemo treatments were cut short in March as they were just creating more medical dilemmas than being of help. 

4.  I had a PET scan in June and officially placed in remission.

5.  Until about mid-August I continued to have serious lymphedema of both legs and while it still flares up I'm grateful it's not daily.  For nearly 3 months now I can actually wear real shoes!

6.  Apparently neuropathy is a common side effect of chemo and it affected my fingers and feet.  I still am experiencing this on the underside of my toes.

7.  Of course I lost my hair; ALL of my hair everywhere on my body.  Did you know that loss of nose and eyelash hairs makes life a bit more miserable????  I had to resort to eyedrops to keep them moist and clean.  As for nose hairs, yes it's yucky to have to clean your nostrils but without those hairs I had several nosebleeds daily.  Oh, and when body hair started growing back I got these awful skin rashes that have taken months to go away.  And my head hair?  It's coming back thick like it was before I got sick in 2008 but it's also nearly black and I've always been fair-haired.  Honestly, I didn't recognize myself and when it got a bit longer I dyed it to a shade as close as it was before chemo.  Right now my hair is almost  long enough to cover my ears.  I'm grateful the hair is growing back but right now I look better with my wig.

8.  Physical side effects from both sets of treatments continue to plague me; in some respects the damages are permanent the worst of which is to my colon.  I now am trying to adjust to life with what is essentially Chrohn's Disease; it's almost as much "fun" as dealing with my monster.  Other limitations might improve over time such as sitting, standing, walking, lifting, pulling, pushing.  I've become one of those folks who ride the shopping carts and then I get sore from sitting on it, sheesh!

Okay, so now on to the real uplifting part of this post:  For those who don't know on August 31st my grand-daughter became a big sister!  This blessing was even more of a surprise than the first grandchild was and now I've got two beautiful grand-daughters. 

Important as that news is I believe it's also a blessing I've recovered enough to become a member of a local church.  I've been attending services and even other doings there for nearly 3 months.  It's wonderful to fellowship rather than just "church" at home.

Also a long time coming has been being able to start exercising again.  For me this means water therapy.  Recently I joined the recreation center in the next city (ours doesn't have one) and now have access to a heated pool 7 days a week.

On November 29th, I'll be having my next PET Scan and will know the results December 1st.  If there is any monster showing up I'd be very surprised.  As awful as chemo has been for me I'm certain the monster got killed with the first dose.  I believe The Lord has healed me of this creep.  Residual damages aren't easy or fun to cope with but all of us have some type of life's battle scars, eh?

I'll be posting more regularly because this journey, OUR journey, continues.  My love to you all.

Darkness Before Dawn?

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     My sweet life is usually filled with one balancing act after another; most days it's getting to and from medical appointments;  the other days it's trying to get appointments or recuperating from what happened at them. Having a monster to cope with brings challenges which I choose to keep sweet, not bitter; some days I confess it's a bit more difficult to avoid sourness.     Truth be told, recent times have been a struggle. perhaps this is the darkness before the dawn as relates to my health.  How I long for the time when being sick is rarity as opposed to the normal.

Times have been tough for me of late; I've got bi-lateral lymph-edema in my legs which has now spread to my torso and I'm so filled with lymph fluid my weight has shot up 79 lbs in less than 26 days.  I ended up with infection to both legs which resulted in a 4 day hospital stay, specialized medications and therapeutic  wraps from toes to thighs.  The wraps are done in a precise way designed to help push the lymph fluid excesses out of my body.  This type of edema cannot be treated with Lasix. I'm being told this condition will be a life-long issue; all I know is this is painful and with feet and legs nearly the size of my thighs wearing shoes is impossible.

Dr. L has suspended my chemo because my body is just too beat up to withstand it right now.  I've required another 4 units of blood and 6 units of platelets.  She's had me stop the proctitis treatments which is ok because that bleeding has nearly stopped (yay).  So for now treatment and monster status are in limbo. Maybe dawn is near?

  Never knock on Death's door: ring the doorbell and run (he hates that).                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    

My Life These Days

Yes, even with all of the turmoil this monster keeps wreaking on me I still praise The Lord if only for guiding me through  it all.  To each of you reading these posts please know these past weeks have been a bit overwhelming with medical challenges even my doctors have been surprised by.  Far too much of my time on a daily basis  is spent with me 'lost in space' of late; in fact trying to focus on this posting  is challenging.  I hope you'll bear with me as I try to be more consistent with updating this blog.

It's already March and I think back to a year ago I was struggling to pack for the big move to Texas.  Today,here I'm sitting in my own sweet mobile home enjoying the plethora of nature.  Being able to enjoy antics of the squirrels, beautiful but noisy blue-jays, cardinals and finches is such a gift.  When I feel better there will be yard work for me to do; including flowers and a small veggie garden to plant. Today is one of nearly feeling well; days like this are very precious because during the past two years they are rare.  Thanks be to Almighty God for this extra blessing!

Since last I posted I've had some pretty dark days doing battle to kill this monster.  The side effects of chemo are annoying at best and frightening at worst.  The steroids have packed nearly 40 pounds mostly in my mid-section, now add to that bi-lateral lymph edema in my feet and legs and I look like the Michelin Tire Mascot.  At one point two weeks ago the skin from the knees to the tips of my toes was so swollen fluids were leaking from the pores of my skin which had turned red and hot to the touch. (that bought me a four day hospital visit).  Of course my blood counts continue to spiral downward, so I've had more transfusions and I'm nearing the 80 units mark. Lately chemo fog has been affecting my memory,  most food or beverages are tasteless to me and for nearly two months now I'm daily battling nausea and diarrhea.  Lastly the extreme fatigue continues which partly is due to the bacterial infections I keep getting in my intestinal track and strep infections in my legs/feet (caused by the lymph edema).  Just a bunch of fun, eh??????

Currently I'm on a chemo break; this basically means treatment gets stopped before it stops me.  I'm just one of those persons whose body has violent reactions to the treatments.  On March 15th I'm having a PET scan and the results of that will determine if any more treatment is even needed.  I'm hopeful that the monster is gone forever but I'm well aware  because this time it got into my lymph system I may be facing a prolonged battle.  Having this break from chemo will give my body time to rest.  As I've mentioned in previous posts, every cancer patient gets customized treatment  and from now on my oncology team knows just what my body can and can't handle so even if I've got more chemo to do what I'm physically going through won't be a shock.

The major issue I'm dealing with right now is another strep infection in both legs/feet.  In addition to antibiotics the physical therapist had to wrap me up.  She first weaves gauze around my toes, next my feet/legs up to the knee caps are covered with stockingnet , then she wraps sterile batting over that and then elastic bandages are wrapped from the base of my toes to below the knee caps.  Lastly, another stockingnet goes over the wrapped areas to help stop unraveling.  This treatment also involves simple therapy massage designed to unblock the lymph nodes so the swelling goes away.  Once the swelling is gone I must wear compression stockings until I go to bed; these aid in keeping the lymph-edema in check.  We think the first strep infection never went away and that's why I'm going through this treatment again.  Gotta tell you there's quite a bit of pain with these episodes and then there is the walks like a wooden soldier stuff to deal with.  By the way, I'm told I most likely will be dealing with this condition for the rest of my life......hmmmmm, we'll see what God has to say about that.

Well folks that's it for this post which has taken me a long part of today to get through.  Please know I pray for everyone's needs to be lovingly handled by God; He knows what's best for us regardless our circumstances.

My help comes from the Lord, the Maker of heaven and earth. Psalm 121:2

From Kansas To Oz

From Kansas To Oz is a book recently given me by my ACS navigator.  This well written book feels as if the author, Gail Larson, stepped inside my body and began to write about my monstrous experience.  I urge each of you to read this easy book and perhaps then you might begin to truly know how I and countless others on this journey feel through this ordeal.  Right now the main thing I feel is fatigue so bad it is an effort of every fiber of my being to just sit up much less try to do anything else.  Have I mentioned lately I hate cancer??????  I hate what it does to a person, it alters you even when you closely guard yourself against it.  It invades every aspect of your life; yet in some ways this monster has made me less fragile.  My trip from Kansas to Oz is not remotely over but like Dorothy and her traveling companions the trip is made easier together even though each must face his/her own demons along the way.

I had to skip one week of treatment as I was in too bad of condition for it but I did have one last week.  It wasn't pleasant but it didn't knock me to the ground as badly.  Remember, I am a person who rarely took even Tylenol in the past and to have radiation then and chemo now you gotta know my body is screaming NO No NO! to all it's being subjected to.  I detest all the side effects and frankly they make me cry out in helplessness at times.  Not having control over one's body fluids is frightening, mortifying and reduces me to child-like begging for mercy to make it stop.  There is nothing pretty or romantic about dealing with the treatment effects; it's dehumanizing in my opinion.  Sorry to be so brutal here but I did say long ago in this blog I would try to tell the whole picture.  One of you may have to endure what I am going through and I want you to be prepared as best you can on what to possibly expect.  Please know my fervent prayer is that none of you has to go through this.

I continue to have transfusions by my count I believe I've had 8 sets of platelets.  They are 6 units each. Then there are the 60 separate units of red blood cells.  And the counts will continue to go on.  I was able to have a treatment from the 'butt' doctor last week.  I got a triple dose treatment since I'd not been there in over 5 weeks and it was a rough session however things are healing in that department.  Each week of chemo  treatment means I spend at least 4 days being messed up and/or running back and forth for more shots, hydration or transfusions.  Nothing about this process is cut and dried.  Seems each time some new side effect attacks me.....whoo hooo...I'm a poster child for all things goofy.

On the plus side, I was blessed with two new wigs from the ACS navigator.  They are so real looking you cannot tell they aren't my real hair.  I still have my lashes and eyebrows along with a smattering of fuzz on top of my head but for how long I can't say.  The wigs make me feel a little pretty, something I need to feel because the steroids have me blown up like a puffer fish.

That's it for this time, I simply have to get off this chair.  I love you all and pray daily for you....I don't need to know you to love and pray for you.  Until next time, follow the yellow brick road!

Moving Forward

Today is a week since last chemo treatment stuff and I couldn't have my treatment this time because my white cells are waaaaaaaaayyyyy too low.  I've got some kind of pre-infection going on so it's beck to the anti-biotic drawing board.  On the plus side my hemoglobin and red cell counts are in the double digits, a bit low but now by much..go me!  Also I explained that the while cell shots, Neuprogen, they give me depress my respiratory system to the point it feels like I've got an elephant sitting on my chest and can barely catch my breath.  Feeling like I am sucking for air constantly is not a good feeling nor is it good for my body whatsoever!  They said never had a patient given them a description such as mine (again, go me for being a first) I took one shot of this stuff today and by the time I got back home an hour later the same reaction was taking place.  I've called them back to report this and before the work day is over they'll let me know what to do about the other 2 shots I'm to get Thurs and Fri.

This whole experience with chem is so very different that what I went through in 2009 with the minimal chemo and mega radiation.  Except for the internal radiation treatments this time has been by far much more challenging to deal with.  I barely recognize myself this time, I'll need major dental work, serious skin care, virtually no lifting/pushing/pulling, I' m still unable to rejoin a fitness center due to those things plus I am still bleeding so using aquatics is out of question still.  Generally I just feel yucky most days and yet I have so much to be grateful for: although i get seriously nauseated I have not vomited and for now the loose stools have stopped so I can eat real foods again.  All in all I could be much worse and I am so blessed not to be!

Well foks I'll keep you apprised but for now I plan to take a nap and when I wake up my mom should be here for a visit!

Day After The Day Before

So it's a new day and I'm pleased that so far I'm still feeling ok for the most part.  The chemo got chopped into one third dosages for this week and the next two instead of having the whole amount in one shot.  Hopefully my system won't go into a tailspin as this Saturday approaches.  I had another neuprogen shot today to send my cell production into maximum overload (one more on Friday) that dose was also cut from 450 mg to 300 mg and while I faintly feel like that sea to shore sensation it's not as furious as before, hopefully the shot tomorrow won't send that smack up in my system.  And yes, I am praying I can stay away from the 'porcelain throne'/shower...if that starts up again I'll be back in the hospital.  A new twist has come up this treatment: the steroids I'm on have gotten me swelled up to where I am looking preggers ( and uncomfortable)  That darn lymphedema just won't go away either, I rather miss seeing my size 8 feet and slim legs.  To sum it up at this precise moment I sort of look like the Mitchelan Man, except the steroids also make me look like I've been out in the sun too long and I pretty much feel like a huge rolly polly toy...go me!

On the plus side, after getting shot up my next stop was one floor down to cancer navigator from the American Cancer Society, like the one I had while being treated in Denver; and I was blessed with two brand new wigs!  Free and exactly my hair color!  One is slightly longer than shoulder length, just like my hair was a week ago and the other is collar bone length, this shorter one is  slightly curled, my kiddo said "This one makes you look like you have the First Lady's hair do"  How could that be, for obvious ethnic reasons for starters and me being blue-eyed and blonde I'm hard put to see that connection...I'm thinking maybe it makes me look more like Martha Stewart.  Either way it was such a gift to know that when I go out in public now I can look like just a person instead of a monster victim; cuz' I don't remotely think of myself as a victim of anything, especially of my monster!  So anyway this part of my day was wonderful, now I just have to get used to wearing them but I will because it's gonna be a long time before I have my own hair again.

This journey consistently amazes me; I keep meeting/being met by some of the sweetest folks; God-loving folks and I find it encouraging to fellowship with them as our paths cross; they, too, appear to be encouraged by me as well....all part of God's perfect plan for our lives.  I just wish His vehicle for us intersecting wasn't the monsters we are battling in our bodies.  Don't you think it's amazing how God utilizes the negatives in this life for His ultimate glory!!

I'm tired so will close this for the night...love and peace through Him for you from Him!

Beginning today, treat everyone you meet as if they were going to be dead by midnight. Extend to them all the care, kindness and understanding you can muster, and do it with no thought of any reward. Your life will never be the same again. (Og Mandino)

It's A PowerPort Chemo Kind Of Day

 

Today is chemo day, blechhhhhhhhh!  What may take place is mystery which will be revealed over the next hours and/or days.  Here's a recap of what happened 4 weeks ago.

Dec 13th had Bard PowerPort surgically implanted in my right upper chest wall.  this device will remain in my body for a  minimum of 2 yrs and will require flushing out at least once per month.  When it  is accessed there is minor pain involved as a needle has to go into my chest; also wearing a bra and a seat-belt require being creative so as not to place pressure on this thing.

Dec 14th 6 & 10 PM I take Decadron a pre-chemo med to lessen peripheral neuropathy & delayed nausea.

Peripheral neuropathy is a problem with the nerves that carry information to and from the brain and spinal cord to the rest of the body. This can produce pain, loss of sensation, and an inability to control muscles.

• "Peripheral" means nerves further out from the center of the body, distant from the brain and spinal cord (which are called the central nervous system).
• "Neuro" means nerves.
• "Pathy" means abnormal

Dec 15th  Chemo day starts with blood  counts being done, if the numbers are ok then pre-meds are given; anti-nausea,antihistamine, decadron and zantac.  Then about 30 minutes later chemo drugs, Taxol and Carboplatin, are administered over about 5 hours.

Dec 15th after chemo and the 16th I felt fine except for the Neulasta shot I got on the 16th, it puts cell making into super overdrive to try to keep up with chemo killing off everything in sight; it  causes pelvic/kidney/low back pain as that's where most of our stem/blood cells are produced.

Dec 17th, 5:30 AM I wake up knowing  I must get to the hospital, as the hours pass I only feel worse by 3 PM I'm honestly ready to be absent from the body and present with The Lord.  My one year old grand-daughter and I are both wearing diapers and having someone help us clean up(humiliating, for me).  My nurses literally pray as they tend to me.  I remember thinking I didn't even get a whole dose of chemo, yet this reaction takes place????  Over the next days I am pumped full of fluids, pain killers, antibiotics, platelets, blood and 2 more shots to produce mass cell production.  The shots send my blood pressure nearly to double in a 10 minute time frame and they immediately ran heart tests, heart ok but the side effects from the shots make me feel as if I'm being sucked out to sea by giant waves then smashed back onto the hard sandy shore then sucked back out and on and on and on (this reaction didn't stop for 4 days).

Dec 22nd,  3:30 PM I get released from the hospital.  I feel like I've been hit by another big rig, a train, a couple of buses and a huge partridge hit me with the  pear tree then dive bombed me!

Dec 23rd I still feel yucky but am able to decorate the Christmas tree.

Dec 24th, I feel a bit better and manage to get some shopping in for small gifts and the Christmas meal.  I spend the remainder of the day prepping for the feast.

Dec 25th, still not up to par but the meal is great and being with the family is very special.

Dec 26th to current date still battling gastro-intestinal issues, get more blood and more platelets.

And so here we are, chemo day again.  What fun will take place this time?  I know only this:  I am staying prayed up, folks.  More later!

Faithfully Hoping

 

A new year, a time for faith and hope that this is when my health is fully restored.  From November 2008 to date I've been either battling cancer or the treatment/side effects of this monster.  Each day I pray for guidance and strength to go forth.  In recent weeks chemo has been kicking me to the curb, but by God's grace I continue to climb back into an upright position and keep fighting back; some days I found myself standing in the shower crying and singing Christmas carols until I began to feel somewhat better (chemo sent my body into a tailspin where my blood counts were in danger zones and wearing the 'real Victoria's secret'...diapers, was necessary).  Let me remind you of my stance on this illness: I hate cancer!!

This time around it's gonna be strictly chemotherapy and already my oncologist is telling me I am a poster child for its side effects...yea me; after all since I've had so much fun with radiation why not chemo as well?  Initially my treatments were to be 1 huge dose every 3 weeks for 3 months but my system was in such poor shape Dr. L opted to give me only a partial dose the first time.  She said her concerns were that I'd go into a tailspin and die from the treatment if I had a full dose.  Turns out even the partial dose was way  too much and 2 days after treatment I was in the hospital for 5 days trying to get my body under control; including 3 blood transfusions.  I was ok for 2 days after leaving the hospital when I got some virus and until 2 days ago I've been about as sick and miserable physically as I ever want to be again.  Last week Wednesday I had 6 units of platelets and yesterday another 2 units of blood transfused.  Today I feel very tired, tonight I start taking my pre-treatment meds and tomorrow I have my 2nd chemo treatment.  Dr. L has changed the plan to much lower dosages but on a once a week basis.  I am prepared for the worst but hoping for the best after treatment this time; the trouble with chemo is the side effects can change each time I have treatment...whoooo hooo!

Oh and by the way, my long tresses are just a memory.  5 days ago, like a Charlie Brown Christmas tree, my hair just began to fall out in chunks so I took a scissors to it, cutting off the long parts.  I only have a few wisps left...kind of Donald Trump-like.  I've picked out a couple of wigs and have some gorgeous satin fabrics to make scarves.  Yeah, I cried about the hair, not so much for the hair itself as for it being one more, of many, indignities in the process of getting rid of this particular cancer monster.  Without my hair I will now be seen by many as a cancer patient instead of just myself; because the fact is I am just me, a precious child of God and I refuse to let that monster define or confine me.

On a final note for this post I ask for prayers also for my friend of nearly 40 yrs who recently began treatment for multiple myeloma and a family member with prostrate cancer.  My friend is tolerating experimental treatment well and the other had surgery where the doctor said he was 85% sure he got it all.  Nothing about battling these monsters is simple for anyone.  I hate cancer and I especially hate it invading those whom I love.  So please be an angel and pray for them, thanks!

What Do Angels Look Like?

Like the little old lady who returned your wallet yesterday.
Like the taxi driver that told you that your eyes light up the world when you smile.
Like the small child who showed you the wonder in simple things.
Like the poor man who offered to share his lunch with you.
Like the rich man who showed you that it really is all possible, if only you believe.
Like the stranger who just happened to come along, when you had lost your way.
Like the friend who touched your heart, when you didn't think you had one to touch.
Angels come in all sizes and shapes,
all ages and skin types.
Some with freckles, some with dimples,
some with wrinkles, some without.
They come disguised as friends, enemies,
teachers, students, lovers and fools.
They don't take life too seriously,
they travel light.
They leave no forwarding address,
they ask nothing in return.
They wear sneakers with gossamer wings,
they get a great deal on dry cleaning.
They are hard to find when your eyes are closed,
But they are everywhere you look, when you choose to see.

Crazy Quilting of My Life: Part IV

Knowing God is always in control of my life brings me immeasurable comfort, courage and even comedic relief during my crazy health battle.  Visions of me sitting outside a hospital far from my home with an old fashioned organ grinder, a monkey, gallon-sized cup and a sign asking for blood donations sort of danced through my head after the doctors sent me home.  Knowing what might be the treatment to correct the RIHP and having the process set up are very different; so my next goal was to find help in my local area and get well.  Putting myself completely into God's care made this less stressful.  I had to believe He would lead me, as He always has, to the right medical help.  Thus far the journey has certainly not been a simple nor straight path; why would I think it would be now; besides, it's become increasingly clear to me the health factor has never been the real goal of this journey. (more about that another time)

It's time for you to strap yourself in and take a ride on the medical roller coaster with me....ready, set, WHEEEEE!  REMINDER WARNING:  This blog is regarding a cervical monster and its side-kick, rectal nasty creep; both are hideous and only when totally obliterated will I cease feeling invaded.  Reality tv shows have nothing neither are remotely attractive some of what's posted below may be graphically stated

September 20 thru 29 in-patient, 5 units blood, 2 units fresh frozen plasma
September 27 learn about formaldehyde treatments to correct RIHP instead of colostomy, specialty treatment which involves placing  formalin directly onto the radiation damaged tissue inside the colon.  This is a precise treatment which chemically cauterizes/embalms the infected areas.
September 31  Praise God, I located a specialist who accepted my medical coverage program, within reasonable distance from home, too!
 October 1  I meet my new specialist, there's great rapport between us and I get my first "butt embalming" treatment.  It was an excruciating procedure but knowing I won't be dealing with a colostomy for the rest of my life helps me get through the treatment.
The remainder of October I spent in and out of the hospital, doctor offices and just trying to feel well.  Nothing takes the pain away in my pelvic area but meds do help; the edema from my knee caps to my tippy toes make me look like I have 'elephantitis" and walk like a wooden soldier in the Nutcracker Suite.

November I met my new oncologist and get my 3rd of 4 PAPs for the year.  She's a female version of Dr. B. in Denver, so I know I'm in good hands.  Based on my info during my exam she opts to have ultrasound done on my legs and a PET scan.  The ultrasound is ok, the PAP is ok, the PET scan seems off and she orders a biopsy of my Para-Aortic lymph node, the day before Thanksgiving the result says everything is ok.  The next week I'm back in the hospital for more transfusions and my primary care doc brings in a hematology oncologist to find out why I cannot sustain good blood counts even though the butt embalming is working.  A CT scan is done and once again those lymph nodes show enlargement, so the next day another para-aortic biopsy is done.  A week later my oncologist gives me the results:  The Monster is back, it was hiding during the first biopsy.  Praise God I had the 2nd biopsy because the Monster is only Stage I.

Some days there won't be a song in your heart. Sing anyway. (Emory Austin)

Crazy Quilting Of My Life: Parts I, II & III

Ever since moving to Texas getting AND staying online has been a journey in itself.  This last absence is due to a storm which wiped out our internet box and the motherboard on my computer.  It took nearly 5 weeks to get internet service restored and a bit longer still for my computer to be repaired.  Throughout that time I was also hospitalized twice, going from one doctor's office to another and just trying to wade through the medical maze.  So please know I wasn't trying to avoid posting.

Crazy quilting is called that for the mismatched shaped and types of materials and embellishments used to make something so beautifully cohesive, unique and useful.  Life, certainly my life, is like a crazy quilt; a work in progress piece by piece, bit by bit; one stitch at a time by The Master, Almighty God.  Since last I posted He's been busy taking my crazy quilt of a life on a journey to new spiritual levels I may never have known without that monster invading my body.

The journey to reclaim my physical health hasn't been smooth in any respect. Once I finally got approved for and then had the colonoscopy I really had high hopes for soon getting the radiation damages fixed.  Instead, what happened was then having to deal with a situation where that doctor reported my colon damage as basically very mild or at worst just barely bordering on moderate.  He all but called me a liar in regards to how much blood loss I was experiencing; which made no sense considering it was he who ordered transfusions be administered to me twice in less than 30 days and each time I was given 2 units!! Then he made it clear by the 3rd time I needed transfusions he did not want to manage my needs for them and to have my primary care doctor do it. Although my PCP was very willing to manage the transfusion care the fact is now I had to go two places rather than just one to get this accomplished and now instead of at most a 24 hour set up time I now was having to wait up to 72 hours or longer.  To further complicate matters based on the "mild" diagnosis of radiation proctitis  imagine the frustration level of not getting financial approval for medicines in a timely fashion.  I could have my prescriptions if I paid full price but the financial program I'm in wasn't going to pay for them.  His comments and/or diagnosis regarding my case made it seem like I was using the system to get drugs.  Lastly this same doctor told me he wouldn't refer me to another specialist to help me but he did want to do a follow up with me in 2 months.  In the meanwhile he expected me to keep proof of how much I was bleeding and to administer medicated enemas to myself (which never happened because they contained drugs I am very allergic to......sigh).  Today was to be my follow-up appointment but I told the office assistant last Friday I was not coming back.

When I didn't get my meds things went really sour.  I'd caught a virus and was really run down, on Thursday August  19th, I had two units of blood transfused but they didn't help me feel better and by Saturday I was so painfully sick I literally was crying out to God heal me or bring me Home to Him.  I turned the radio on and sang out loud, through my tears and pleas for relief, songs of praise and worship.  When I felt somewhat calmer I called my mom and had her read devotionals to me; but she cried, too, then insisted I go to the hospital.  (I'd been afraid to go to the ER believing I'd get kicked out of the medical program)  My daughter took me and within 90 minutes I was being admitted.  It took them 4 days to get me stabilized with medications, two more units of blood and a bag of fresh frozen plasma.  While there I was placed on a new medication to help process my food; normally given for cholesterol problems it also helps break down acids for folks who no longer have a gallbladder.  That medication did not stop my bleeding but it did stop acids from further damaging my colon; a really big help!  Also while there a team of clinicians got the ball rolling in my favor about my medications and the need for surgical referral.  When I left the hospital I felt better than I had in months; unfortunately it wouldn't last.

The good news was I was medically stabilized and the new medicine, Prevalite, was helping.  I finally was relieved to know the medical program I'm in now, clearly, understood my  RIHP (Radiation Induced Hemorrhagic Proctitis) was not "mild".  My medications not only were approved for payment but I was now being followed up on my care with a nurse navigator assigned to me by the medical program.  This was very good because now they wanted to help me get the help I needed. After all I came into this financial assistance program with a serious on-going medical need. The next steps involved locating, pre-certifying and getting appointments with specialists.  Those steps take time and naturally my medical stability was going to decline on a daily basis until the problem was corrected.

I've been at this post off and on all day so I'll finish it tomorrow.  G'night, God bless.

10/12/10  Part 2

The next steps in my journey took me to a clinic where I thought I was getting the all in one doctor: Oncologist, hematologist, gastro intestinal and surgeon; but it turned out he was only going to evaluate my anemia.  It was very disappointing but he did listen to my pleas for help and sent notice to my PCP to find me a gyno-oncologist to address my concerns about possibly no longer  being in remission; also to handle my required follow-up PAPs.  Next he requested I see a surgeon asap to explore the possibility of having a colostomy to stop the bleeding.  I'd only been out of the hospital 6 days when I saw him but he tested my blood for several things and was able to determine from those tests I am still quite anemic but have enough iron and that it didn't appear I had any other blood disorders.  He did recommend the fewer transfusions the better as my new antibodies make it difficult to match me with donors.  At that time my blood counts didn't warrant transfusions but he said I'd need them soon.

Obviously I've learned when I need transfusions so I told my PCP it was time but she wanted me to wait until I'd seen the surgeon; why to wait was beyond me but I did get in to see him September 15th.  He was really a great guy; competent and compassionate.  All he could offer me was a complete colostomy but he was willing, even eager, to consult other specialists to see if something less drastic was possible. He didn't really want to do surgery on me due to the radiation damages; it turns tissue into 'slush'.  Doing surgery on m would be like soft jello.  I only  spent 5 minutes with him but left having a peace and trust about his part in my journey to health; I had no idea just how instrumental he'd become to that end.

The next day my PCP made special time to see me to follow-up about  the hospitalization.  She was surprised I'd already seen the surgeon, had gotten the hematology report and was working to get program approval for me to see the gyno-oncologist, as she isn't one of their providers.  She made sure I had enough medications and told me to come back the next day when the flu vaccine would be in to get my shot.  The next day I did go back to get the shot administered by her assistant but my PCP wasn't there and neither was the order to get transfusions.  I didn't get that until the next morning, a Saturday and the hospital out patient services only .go Monday through Friday.  I had no choice but to wait until Monday morning and by then I knew I was in distress.


10/14/10  Part 3
Monday, September 20th, I really shouldn't have been driving because I felt so weak but I drove myself to the hospital to get set up for transfusions the next day.  There ended up being a major paperwork approval snafu which worked in my favor because by the time it got sorted out I was feeling even worse and had already decided to call my daughter to have her bring my SIL to drive his truck and me back home.  Normally my blood isn't tested until hours after I leave but that day the lab tech told them to run it while I was still there because she said I looked awful.  Turned out my counts were below even half of what they should be, my PCP was called and she had me admitted in-patient.  I was there for the next 9 days, got 5 units of blood and 2 units of fresh frozen plasma; these infusions took place over a 7 day time span.  Each time they thought I'd had enough to fill me up the numbers said otherwise.  From my knuckles to the bend of my elbows I was a mass of painful puncture bruises (very colorful, though with each passing day).  The surgeon I'd seen came to see me 7 days into my stay and told me it would be dangerous for me to have surgery in the area where I'd been radiated; that having a colostomy was not an option for me. Instead he'd consulted with other specialists and there was a non-surgical treatment available to correct the problem.  His plan was to do a hospital to hospital transfer of me down to Galveston as that is the state's medical university and there was a specialist to do this treatment.  About an hour after I thanked him for his help I gave written consent to transfer me, called my daughter to have her pack a suitcase of fresh items for me and then waited to be transferred the next day.

Can you even imagine how excited I was???  Not only was I not going to have a colostomy, I was finally going to get this bleeding fixed!   AND, with all the blood/plasma in me I felt the best I'd had in a year.  But when I saw the surgeon the next early afternoon coming to my room my heart sunk, I knew something was wrong because there would be no need to see him again.  The bad news was I wasn't getting transported to Galveston because turns out the treatment is done as an outpatient.  Had it been an inpatient treatment there wouldn't be any problems, including the financial costs getting covered under a state program in Galveston.  As an outpatient I'd have no medical coverage, plus it could take maybe 2 months just for initial consultation!  Even more distressing was learning there was a specialist in my area who performs this procedure but refuses to accept the coverage program I'm in and wanted pre-payment of up to $3000 !  Sorry, folks, but I had a melt-down right then.  It was awful to be so close to the brass ring but not be allowed to get on the merry-go-round to grab it.  I was crushed, I sobbed.  The surgeon left but about 5 minutes later he and a social worker came to see me and they were honestly grinning ear-to-ear; they told me they had figured out a way for me to get the treatment in Galveston.  Are you ready for this????????

The doctor asked me if I was certain I knew the signs and symptoms of requiring a blood transfusion; if not he'd tell me what they were, but of course I know after 37 of them!  He then told me when I knew I needed one to drive to Galveston (nearly 2 hours from my house), go to the emergency dept and then ultimately the specialist would have to treat me.  Gotta tell you, folks, I know they meant well and by all accounts he's a very respected, competent surgeon but that was the craziest medical suggestion I'd ever heard.  When I asked them how I would explain to the folks in Galveston I was in their area that sick and by-passed the one in my own neighborhood to get transfused???????  The social worker tells me this is a legal trick done frequently to help patients who cannot seem to get the right care going through the regular channels.  Sorry, but for once I was feeling really great and I wasn't willing to deliberately make myself sick so I could maybe get the special treatment in Galveston.  I say maybe because since it's an out-patient treatment anyway then I'd still have to see her in her office; so that just didn't make sense to me.  Anyway they left my room and I just cried out of frustration.  I knew now I'd be sent home where the cycle of transfusions would resume.  The staff were wonderful to me, encouraging and empathetic.  As evening approached I asked what time I was being released and was told the clinicians were not releasing me as they were trying to get a concrete care plan done.

Then the Holy Spirit gave me a thump upside my head and reminded me just Who was really in control, Who was stitching the seemingly mismatched pieces of my life together.  More next time.

Got Moisture?

My health goal is to feel and look as drenched in dew as this flower.  Right now I'm in very parched condition, physically; so it's good, spiritually, that my soul is always quenched.  Recently my sister made and sent me a beautiful mini-book filled with scripture and uplifting quotes/sayings/poems which is placed next to my Bible and other uplifting books (also, mostly given to me by my sister).  The books and prayers, as does my nearly daily phone calls with my mom; help me go forward when I simply feel completely wilted.

Since I last posted I had to go back for more transfusions and would like to report they helped me feel better; but I can't because they didn't.  At this point it just seems like I'm barely maintaining status-quo in the blood dept.  There has to be a solution to this blood loss/transfusion merry-go-round.  On Monday, August 9th, I'll be going to see the GI doc for either the final time or for him to get a health plan together for me, cause the one he told me to use (go home and learn to live with it) is unacceptable to me.

If there is so much radiation damage that to do laser or other kinds of surgery would mean me bleeding to death during an operation then fine, but then there has to a way for me to get some strength back in conjunction with the constant blood loss.  Perhaps mega vitamin therapy/shots is in order.  All I know is I am unable to babysit my grand-daughter because I am too weak to pick her up or to keep up with her as she plays; I can barely stay awake these days.  It's as if I'm just slowly slipping away over this condition and yet in other major areas of physical health like heart, lungs, etc everything is great.

Monday is also going to be a day for me to confront...yes, I said, confront, the pharmacy specialist in the medical program I am in.  That office is located just before the GI doc's bldg and I'm going to stop in to ask why she has not placed the cost over-ride on the prescriptions my primary care doc wrote for me 3 weeks ago as of yesterday.  My program card says my co-pay is $7.50 or a max of $12.50 and the pharmacy wants to charge me nearly $300 between the 2 scripts.  The pharmacy has repeatedly left messages for this gal, I've not been able to reach her via phone and neither has my PC doc.  It would be very helpful to have these prescriptions one is for severe nausea the other an internal foam medication for colon pain. (loss of blood, nausea and chronic pain are not helping my goal to have a healthy life)  If this gal is not in or won't see me then there will be someone else there who will because I am not leaving without being helped regarding this problem.  And for pete sake, I am only allowed 3 prescriptions per month in this program as it is!  Of course I can have all I can pay for at regular prices but we know I do not have the means right now to do so.

Is your head spinning from all this yet?????????  And so it's back to something uplifting until we meet again, dear ones.

Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O LORD, my strength, and my redeemer.~~Psalm 19:14

It's That Time Of Year

One year ago I began a journey like no other.  I was, literally, at the end of my life on planet earth.....one more day, they said, and I'd have slipped quietly into eternity.  Going home to Jesus isn't sad, it's just that my earthly timing wasn't finished; thus, here I still am! (it's so irritating when satan keeps trying to adjust God's plans, eh?)

To mark this occasion how about this:  Last week's biopsy report is back and there's NO monster inside of me!  Yesssssssssssssss!  I'm still in remission.  Now we need to get rid of nasty creep.

For now I want to savor the victory of remission.  Tomorrow we can talk more of the 'clean up' process.  Right now I'm going to put my monster fighting gloves away and try to get some rest.

"It is a happy talent to know how to play."

Ralph Waldo Emerson

Which Direction

While there are a number of directions to take against my nasty creep, none have been chosen.  Crystal clear, though, is the direction of going forward to rid my body of this unwanted condition.  In this journey you and I have been on it's, repeatedly, come to light killing the monster isn't where it ends.  It's been awhile so let me remind you all of how much I detest cancer for the simple fact in many cases, mine being one, ridding one's body of the monster creates treatment side-effects which then become the new life threat.

Radiation proctitis most often takes years, however some of us obviously are 'early bloomers'.  At it's worst, radiation proctitis is potentially life threatening, very serious, very painful and is undeniably life altering.  The extent and/or location of radiation damage to the colon determines the level of medical concern; especially as relates to bleeding.  Internal bleeds can go on for some time with low blood counts being attributed to other treatment/post treatment things until 'suddenly' rectal bleeding 'begins'. Unfortunately even when the bleeds become external they can, initially, still be explained away if treatment is on-going or recently ended(nasty creep is also sneaky while it does its' damages). The pain, weakness and other 'accessories' of nasty creep create havoc with enjoying basic daily life.  Remember the 'episodes' I used to have with bleeding.....need I say nasty creep 'episodes' are more mortifying to cope with even at home, alone; therefore are not anything I'm willing to risk in public. (I'm not that cute baby wearing the denim diapers!)

Thursday I saw my primary care doctor to plan our attack on nasty creep. What treatment direction eventually is chosen I pray gets me back to healing.  For now I'm back on morphine and zofran to get the pain and nausea managed, my diet has been slightly altered and if the need arises, I'll continue to get transfusions.  Dr. J is going to locate the best internist within the perimeters of the medical coverage I've got and she's asked me to research online for one in the Houston area, as well.

In preparation for my appointment with Dr. J, I spoke with Dr. B to update him about my condition and any suggestions he may have to assist me.  The great rapport  with him is still there and made discussing this frightening situation so easy.  His suggestions and offers of helping in any way he can are such a blessing.  He was very upset with himself over this news, apologizing for this radiation damage. All treatments he gave me were so precisely calibrated/calculated to kill the monster but also prevent/minimize other damages and now here he was telling me he blames himself for my current condition!  How kind of him, but really, folks, considering the miracles God performed through Dr. B, I've nothing but kudos  for him; his God-given skills saved my life.  While speaking with him he was verbally berating himself for maybe not doing more to protect my colon and I reminded him we don't live in a perfect world; that I still think he's the best doctor, second only to Jesus.  After speaking with him I felt much more calm and as if I'd been given the key to a mega-arsenal of weapons to wipe-out my nasty creep.  Dr. B also made it abundantly clear my condition requires swift action, to not waste time with trial and error, then to emotionally prepare myself for the high possibility that to win this battle will mean surgically removing my entire colon.

So what direction will be required to get healthy remains to be seen; as a child of Almighty God I know He continues to sustain me. Plus I've also been blessed with all of you to journey with me.

But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. ~~Isaiah 40:31  (KJV)

Give The Little Lady A Kewpie Doll

Yessiree, step up and give out that prize Kewpie to the lady wearing that hospital gown, the one with those puncture marks all over her arms.  She wins the prize for correctly diagnosing her physical ailment.   The truth is the only prize I remotely desire is my health which isn't going too well these daze (yes, all puns intended).

Radiation Proctitis is its' official name.  I got pictures and everything; which I've opted not to share here (yes, I do have some sense of decency) and at the least they are frightening to look at.....not the sort of images one whips out during friendly gatherings.  Why do I feel so stupid at not knowing 75% of all radiation, such as what I had, results in this condition?  75%!!!!!!  I knew some eventual radiation damages would most likely come knocking but after putting signs and symptoms together I've most likely had this nasty creep gnawing away at me since internal radiation blasted the monster.  This does explain the continued lack of blood even though treatments had ended, the pain and all the other 'goodies' which accessorize this nasty creep.

Not to sound like I just fell off the Good Ship Lollipop, but when do I get a break?  Oh of course I'll keep going forward and YES I am STILL praising GOD for His tender mercies in my life, but even Jesus had His moments in that dark garden.  I'd really enjoy the resurrection of my health.  And lest I forget, we have a week to wait for biopsy results to make sure it's just a nasty creep and not also his pal, monster.

Blessings and hugs to my kiddo today for being with me throughout the 6 needle sticks searching for a vein, for being the first face I saw when I woke up from the procedure, for watching her normally composed mom fall to pieces when being told to basically live with this situation and thanks for her understanding I ain't settling for that type of ending in this saga. I love you more than you'll ever know; oh and I appreciated you tucking me into the gurney with a warm blanket while saying, "there you are, as snug as a bug in a rug."

And so dear, dear ones, the battle for regaining some shred of physical healing goes on.  For now I must get off this chair and rest if I can; then back to the front lines in the morning.

You must learn to live in the present and accept yourself for what you are now.
What you lack in flexibility and agility you must make up with knowledge
and constant practice.
-   Bruce Lee

Sleepless In Texas

Pain is preventing me from sleeping; perhaps better stated is that without pain meds I'm getting no sleep.  It's just one of those times a medicinal assist would very much be appreciated.  This is more than breakthrough pain from the cancer treatments after-effects, this is the wave after wave crashing onto jagged rocks kind of pain; what's almost comical is the pain is nearly enough to make me pass out...nearly being the operative word.  And so, here I am in this blog instead of my comfy bed.

Since sleep eludes me I'm making use of the time.  A pot of what will be chicken broth is bubbling away; this will be my only food until I am allowed to eat regular foods again.  I've also mixed my lovely 'house cleaning' cocktail; mmmmm, I chose the citrus berry flavor packet for the 4 liters awaiting my pallet. (I'm chilling it first, of course)  Rounding out my liquid fare today is iced tea and if I'm really feeling festive I might have a popcicle or two; although this will require a trip to the store as the flavors I have are not allowed due to their colors (red, blue, pink, purple).  Care to join me, I'll be especially generous in sharing my citrus berry cocktail!

For now I'll turn off the burner and try to sleep a bit.....I may be back in here before you know it.

"Sometimes the most urgent thing you can possibly do is take a complete rest." ~~Ashleigh Brilliant

Pit Stop

This week has had it's ordinary challenges; well at least ordinary for my life.  After seeking medical help for months I was able to return to the GI specialist on Wednesday.  He's not a warm, fuzzy sort of doctor but by all accounts his competency is excellent.  He essentially challenged me during the office visit as to my claim of being very anemic by sending to the hospital lab upon leaving his office.  Ummmmmmm, before I'd gotten back home his assistant had called to let me know I must return to the hospital for transfusion......I really love a good challenge but this was so predictable, folks.  I do find this now gives me believability with this doctor, which will hopefully result in a better doc/patient relationship.  Of course it also means I made a pit stop to get refueled.  If you recall the last time I got transfused (December 2009) there was quite a rigamarole to get the right blood for me as I had created new antibodies.  This time was no different.  After two more trips to the hospital I got transfused, today. 

It only took 4 tries to get a good vein so I could receive 2 transfusions.  I already feel a bit better and before the weekend is over I should have a lot more energy.  So as of today I've had 21 transfusions.  Whoever these 21 donors are I am grateful to them all.  Praise God, once again I've had no adverse reactions!!  Do you realize this means in less than 12 months I've had all the blood in my body artificially replaced over 2 times?  How amazing!

Barring anything else I'm going to have the colonoscopy next week Tuesday.  I've already got my 'cleaning house' medicine; yeah, I'm soooooo looking forward to the whole experience...NOT!  But (no pun intended she said blushing) this will at long last give me the information necessary to correct the problem.  And THAT I AM looking forward to, as the unknown is truly difficult to cope with along with the physical deterioration on-going.  I want so much to be physically mended.

For today I am thanking God for the 'challenge' resulting in putting me back on the track...vrooooom!

The greatest prayer you could ever pray, would be to laugh every day. For when you do, it elevates the vibratory frequency within your being such that you would heal your entire body.  ~~Anonymous

Can You Read Me Now???????

Whence last I posted it was meant to be only for a day or two before the next post and here we are over a month later!  This time lapse is due to a restriction being placed on our internet service.....seems we have a kind of metered type; which does work nearly as fast as what I had with dsl in Colorado, BUT, if the metered terms are violated then the service is essentially shut down until the appropriate amount of 'punishment' has been exacted.  There are three of us who use this service and one of us was downloading waaaaaaaaaaaaaaaayyyy too big of something.  The someone who just had to have that something had to suffer with the other two of us; especially since that something downloaded won't even work without the internet....sigh. (no, it wasn't me)  So anywho here we are, can you read me now?

Much has taken place since the last post in this quest for healthcare. As of July 8th, I am finally in the medical program I wanted to access.  In the end they were able to accelerate the process for me due to the nature of my health condition; which is deteriorating daily.  On this Wednesday, the 14th, I'll go back to the GI specialist for updating my records then hopefully even have the colonoscopy yet this week.  This needs to be done asap, I'm losing quite a bit of blood daily and of course all those old symptoms connected to anemia are back; including losing my hair again.  I still cannot get dental care until this situation is fixed.

Being in this program means I can go to the hospital I've already been to here.  This is very good as they are hooked up with MD Anderson cancer center in Houston just in case I am in need of more monster care.  The program is also retroactively picking up the tab for my two trips to the hospital, plus all the 'satellite' billings connected to those visits.  So after a bit of wrangling down here I have a primary care doctor, a GI specialist and access to monster care.

Big news after 3 weeks of waiting for test results are:  my 2nd PAP/HPV tests came back in good standing!!!  This means I'm hopefully still in remission.  What's going on now has been verified as radiation treatment fallout and if I'm not in remission let the battle begin, again.  You all know how I feel about this:  I am in a win/win situation; healed here or in the hereafter and that makes it a bit easier to go through treatments having that reassurance.

I should make this post longer with more details of what's happening but right now I'm tired and pleased to finally update this little blog.  I know even when you don't hear from me that you're still praying for me...I know because I can feel the results of them.  Thankyou for your continued support and love.

To know the joy of living is to know life's worthwhile things:  The satisfaction of work well done, the joy that friendship brings, courage after doubting, understanding after sorrow, learning from our yesterdays and looking toward tomorrow; it's counting up a lifetime, not by the years we've spent but by our store of memories and by our hearts' content. ~Amanda Bradley

The Journey Continues

 

My dear ones, at long last I'm returning to the internet on a regular basis; it's been much longer than I'd hoped.  So much has taken place since last I posted so I'll try to give a condensed version by month.

Balance of March:  My brothers, Rick and Ted, arrived in Colorado to move me to Texas.  I thought I had been very creative in packing my stuff but my brothers showed me they know better than I how to pack 100 lbs of stuff into a 50 lbs container!  It was packing at it's finest even though it was very time consuming.  

The road trip itself was very smooth and my kitty never made a peep the whole time; in fact he spent a lot of time looking out the windows.  I rested in the back seat while my brothers took turns driving; other than a few pit-stops they drove straight to Texas.  Once there my "kids" met us and we went directly to the storage facility. (if I thought the creativity of packing stopped in Colorado I was sorely mistaken because it took even more creativity to rack pack and stack my stuff into that storage space.  A trunk and pick-up truck bed of stuff wouldn't even fit in and had to come to the property with us.)

Of special note regarding the road trip was spending time talking with my brothers and getting to know more about them in the now....sure, we are siblings but as adults we've not spent a great deal of time with one another, so it was wonderful to find out more about them.  One thing which hasn't changed over the years is that we all still love one another very much; that underneath our 'gruff' exteriors we are all very loving and sentimental.  The fact they let me interrupt their busy lives to help me move is something I'm very appreciative of.  Even though I live a few hours away in Texas from them I look forward to seeing them more often in the near future...why maybe we'll all go out to karaoke, I'd like that.

For the rest of March, all of April and most of May I spent a lot of time being a grandma so my kiddo and her hubby could take care of business with renovating their new house.  Meanwhile we all stayed in their old house, pretty cramped for 3 adults and a baby but we managed not to completely go bonkers (although we did have a few 'special' moments) 

My health (current to now) improved in some respects because I no longer had the responsibility of trying to manage a rental property.  Emotionally I felt relieved to no longer live in Colorado.  Although I miss my friends, medical team, being able to go barefoot outdoors, crisp dew-kissed mornings and the beautiful  mountain views the truth is I just hadn't felt like Colorado was my home for the last few years and being ill didn't help, either.

Texas is my home now but still I have a lot of acclimating to do.  The heat isn't so much the problem as the humidity; thank goodness my new home has a new, energy-efficient cooling/heating system.  This may sound silly but I keep the temp of the a/c to 77 or up to 80 degrees.  With the heat being in the 90's or higher outdoors I think these indoor temps are just right for me.  I still get cold very easily, which makes my body hurt even more than normal.  In the early mornings there is so much moisture in the air it's visible like a fog and there aren't any fresh scents from any of the numerous, tall pines surrounding the house.  The trade-off, though, are the glorious butterflies in hues of teal which flutter around me and sit on my windows for hours; also the gorgeous cardinals and blue-jays flying about the yard.  And of course it's usually very quiet all day being in the woods like this and on a dead-end road.  No sirens, no blaring car stereos; just the occasional small aircraft and a distant train.  It's rained, A LOT, but I find the sound of it soothing on the exterior of this mobile home.  The neighbors pretty much stick to themselves but there are two I have a problem with.  An old rooster who wants to keep me from passing the property where he lives; he sneaks up behind me and claws me.  The other is a roaming beagle who tears everything up in my yard and refuses to be chased off.  Both are quite annoying and unfriendly; no doubt, they think the same of me.

Just this week I finally got to sleep in my own bed for the first time since leaving Colorado; yippie!  Also with so much going on before the kids moved I simply wasn't able to spend time online so it was great to get my computer hooked up in my new creative space. I'm looking forward to crafting very soon.

In May the kids and I drove to Wisconsin.  The baby and I both handled the road trip pretty well; the baby probably better than I.  The first few days I spent with my dad, whom I hadn't seen since August of 2001.  We had a very meaningful time, which is good as Dad is not well and has Alzheimer's.  I simply am not in a position to stay with and care for him but I wish I was as it would solve a few practical challenges connected to his condition.  Regardless it was special to just be in the same room with him rather than the phone calls we make to each other.

From Dad's we went several hours to the city where my mom, step-dad, sister, brother-in-law, neice and nephew live.  Since my last being in Wisconsin (August 2001) all of them had moved to this city so it was my first time seeing their homes and them, too (except my mom who'd been to Colorado twice to stay with me)  They had really terrific homes but most of all just being with them was beautiful!  My youngest brother and his wife also drove down from Minnesota to spend time with me (again, not seen them since 2001 either)  I cried a lot, happy tears and hugged them all until I knew I wasn't dreaming to be with them.  We all stayed at my sister's home as Mom's place wasn't big enough to do so.  It's a small city so everyone was living very close to one another.  Our time together was so precious to me and helped my healing process even though it was very hard to say goodbye when it was time to leave for Texas.  At least this time I was going back home with family.

Now an update on my health:  It's been a bear to get medical assistance here; even worse than Colorado.  I've already accumulated over $20,000 in medical bills since being here by going to the emergency dept twice.  I also ran out of all my medications and was on nothing for pain for nearly 5 weeks.  The edema comes and goes, but the biggest issue is rectal bleeding.  Apparently the radiation treatments caused this problem with scar tissue affecting my colon.  The bleeding gets worse by the day but transfusions are only going to be done in an extreme situation.

The good news is that as of June 3rd, I was blessed with a new doctor who is doing her best to help me get funding for the colonoscopy I must have.  She also did my second post treatment pap/HPV procedure which was very painful and caused me to bleed vaginally. I'm waiting for the test results. She wrote me a script for pain medication so I was finally able to get some relief from this daily, constant pain.   She will not be my regular doctor; I'll need a new oncology team.  I'm not in the cancer medicaid program in Texas (to be in it I'd have to have a diagnosis of cancer, again...sigh)  But as of 5 PM today a financial clerk with a special spirit pushed the county medical program caseworker to get me into the county program which will cover all of my medical needs (and hopefully dental as well).

Although I'm at a fork in the road with my health I'm hanging in there.  I've faced the real possibility that I may need a colostomy or that I'm no longer in remission.  No matter what I am confident my faith will sustain me, as it does each day.  I'll do my best to keep you posted regularly.

"Joy is untouched by circumstance."