Questions!!!!!!!! Someone has to have @ least one???????

I realize that many of you may have a few questions about what is going on with my.....
Treatment
Condition
Why I went to the Hospital in the first place
My radiation therapy
Return to chemo
My continuing care & the skilled care facility I was moved to a couple days ago.

That being said.... If you are in the dark and have questions let me know. However ask me via e-mail & I will put all the questions together & place them on the blog. That may be easier for me then doing it via blog comments.

Quick note, PT was able to get me up to a wheel chair yesterday. I was able to wheel around & stayed in a chair for about an hour in total. That includes working a little with OT before they got me back to bed. My biggest issue continues to be pain in my back, however it now has company. My skin is hypersensitive from about the navel to the feet & OH BOY THE FEET.... yikes.

? Junk Mail Question ?

Have a nice holiday everyone.... I have a question for the people who placed there email in the "Follow By Email" in the blank above. If you have, have you noticed any increase in junk email.

Thanks, Gobble Gobble


Ithought this went out to the inter-web....... Wee early in the am Turkeyday. A day lates not to bad!!!! I'm guessing. I do plan to post another message tonight.

Perhaps A Confusing Blog Post

My recent post talking about weakness my not have been clear to some of you. I appologize for any confusion that was caused. At the time I published the post, I had zero to maybe 2% of my normal leg strength. Paralized from the waste down. Now I was and em still hopeful and plan for a 100% return to function. Of course the Dr's put a much different "downer" look @ the picture & have continued to give me the worse possible outlook.

So with that I have been working at(regaining strength, function) my improvement as much as possible. Ok I hope that clears upsome of the con fusion about my weakness. Slight improvement has begun.

Onto what's up......... My radiation & trying to shrink the mass I have in my spine will continue for another 5 sessions. The mass burst through at T-6. X-Rays will be taken today & may give us a little in site into any "SHRINGAGE" which would be a good thing for once. Now I have bony involvement all over this chizzeled frame & the radiation hits T-6 to C-6. With some of the angles the rad actually hit my stream as well. This is good since it has been such a trouble & painful area.

Maybe in a blog post or group email I will give further details about my care or lack there of from my Dr here looking after me & the care of the staff along with thier abilities and poor knowledge of Pt. care. There is way 2 much to get into that this time.

I am still in good spirits, however my Dr. Seems to bring me down every time he enters and leaves my room. Dispute him we'll keep pushing and bust on outnthis ______________!!!!!! just like shawshank sometime in the near future.

Be well everyone, & like always thank you forneverything.
Love Scott

Waking up with a new resolve and the progress of hospital footware

So I woke up today with a new resolve and ready to put my foot in the ass of another problem.  I just felt good.  The past few days I have met some good people during transports to The Queens Medical Center for my radiation treatments (Kaiser ships me down the road about 15 minutes to get tx:  Then out of knowwhere my Radiation Oncologist comes over to the gurney I am on and starts chating it up about life in general my treatment and the process of traveling to another hospital to receive treatment.  A couple of the transport personnel were down to earth and a little nosy about my condition that somehow help has helped me get past some of my new issues and feeling good today.  "TODAY AT LEAST"

Beside that I figured I would share what a week will do for your foot ware when you enter the hospital. 

Friday 11/11/2011 did I mention that is a lucky number in most Asian cultures.   Admission 2 to Dakine Queens Hospital)

Day 1 Foot Ware, high end socks with ace wraps to decrease the foot swelling.
Day 2 School crossing inflation sleeve to decrease swelling and traffic accidents.
Day 3 Heel boots to reduce friction burn of the heels while in the bed.
Day 4 CPRM (continuous passive range of motion device) made to help keep the muscles stretched and limit atrophy.

Who says American Does Not have Talent.

Compression Sleeves

WTF

CPRM working joints & muscles for a couple hours @ a time.

Heel Boot

From weakness to WEAKNESS:

Lets start with the worst of it.  I have very limited strength to my lower extremities.  The weakness has progressed and it is likely that I will move to another floor.  This would be do to the progressed weakness or my cancer in general.  I was originally admitted to a Medical Surgical floor, but may end up on the Oncology/Medical Floor or the Spinal/Medical floor.  This has not been discussed yet, however seems like the next logical step in my care.  

So onto some items I have a little knowledge about, however nothing solid has been locked down nor can actual time frames can be given.  I did receive my first session of radiation on Tuesday when they mapped the areas with the mass and largest amount of bony involvement (c-6 to T-6) with the tumor noted at T-2 pretty high up in the spinal canal.  It has grown from inside the bone and now forced it's way out.  It is mostly the mass itself causing the pressure, however it is pushing some of the bone and possible the disk into the spine as well.  Hopefully the radiation will shrink or get rid of the mass, however that does not necessarily mean the weakness / paralysis that has occurred since it's rupture will resolve at all, but it could also show improvement weeks down the road 3 or more and potentially (with some hard work return to normal).

Now with the 10 days of Radiation (remembering that today will be day 3)  I will restart Chemo about one week after the original schedule had me starting. 

As for helping with rides and commuting to and from appointments as well as people bringing in food I will try to make part of my online calender public.  Well not the whole thing but I should be able to mark a portion of it public.  If this is possible I will have a link from my blog to my current treatments and hospital schedule.  It will include days in which I still need rides and days which people have already stated that they were bringing in food.  This will keep the left overs to a minimum.  I had quite a bit of food in the refrigerator and it took 2 days of not eating anything else to clear out space for other patients.  That being said I want to thank everyone who brought, cooked and bought me food.  I know it finally gives people a chance to do something & not feel so hopeless, but keep in mind I would like to maintain a healthy diet as well as a fresh minimal preservative free diet.  Just give me a buzz and ask 1st if you can bring something.  Unless you do not mind the possibility of it being wasted within a few days.

Back to the Chemo.. More then likely I will restart on the 28th of November which is 1 week later then the initial planned therapy.

The chemo and it's effectiveness.  It is still to early to tell or have an accurate grasp as to effectiveness of the Drugs.  There are some positive signs (again it is early)  My Red Blood Cells  continue to maintain there levels longer in which I do not have to be transfused as frequently with Packed Red Blood Cells.  My Platelets have also been doing better, however my new Oncologist has also continued to increase my baseline number as to wither or not I should receive a pack of single donor platelets.  My platelet count was 55 yesterday after being transfused with a single donor unit when my level was @ 23.  Pretty high for me.

So there is some good news sprinkled in with the potential short/long term paralysis/weakness.

This has become a little long for a blog post, however I feel if I keep everything at one place it makes it easier for everyone.  So if you know anyone who get's the updates but is unaware of the blog please feel free to pass this info on to them.

The Rroller-Coaster of life just bounced.

Well if you spend time on facebook and happened to look at my page over the past weekend you will see that my friend Jon posted on my wall.  The first post mentioned not having internet access, which I now have, and the second dealt with my worsening back pain which landed me in the ER and then admitted to the Medical Surgical Unit of Kaiser.  My order for pain management was a Morphine PCA aka "My Buddy" where ever I go he goes. a patient controlled analgesic device in which I can receive up to 11 mg of Morphine per hour.

In my last post I mentioned the discomfort of my back and the hopes that it was swelling.   However the pain had been on a rapid increase over the past couple of weeks and continued to worsen.  Even with doubling my pain medication for a week and then increasing this medication a week later the pain in my back was worse while the medication easily masked the pain and discomfort that I have in all my other "hot spots" (sternum, ribs, lower extremity joints).  Lets just say (other then my back) I was feeling no pain. 

side note:  a couple months back I asked to have x-rays done on my back because I felt something was wrong ( I  thought a lesion had fallen and I had a spinal fracture for sure).  Since radiation was not really an option due to the suppression of my bone marrow the Oncologist convinced me that it was not important enough to x-ray at this time.  At that time the pain medication was still strong enough to bring the pain down to a comfortable level of 3 out of 10.

Back to my admission and current situation.  So even with tripling my pain medication my back pain continued to get worse, and my oncologist suggested I go to the ER for pain management since the clinics (oncology included would be closed on Friday as well as the weekends.  Upon visiting the ER I was given 6 or more shots of Dilaudid and or Morphine with mild relief.  I was Admitted to the Med/Surg Unit and given a CT of the Thoracic Spine or T-Spine.  Abnormalities were noted but without comparing the Scan with my previous scan the Internist who admitted me was not able to give me a clear picture of what might be causing my pain.  I was finally able have my MRI done on Monday Nov 14th.  Throughout my spine the radiologist was able to view multiple bone involvements within the bones and bony prominences, However new to the equation was not the cyst I thought and hoped it may be (do to the abundance of cyst that I have had over the past few months)  but it was a mass which I hoped it would not be so.  Hence I never included it in the previous email.  Not wanting anyone to think of the word mass.    

Well it is a mass and I have debated on telling every or anyone for a little while longer what the DX: was but procrastinating the truth has never help in cleansing the air and energy around me and my disease.  I am supposed to meet with my Oncologist Tomorrow, I am sure it will be an interesting bedside appointment.  I talked it over with Kerri for a couple hours after receiving the DX: (since she made the MNF hospital BBQ / APEC Traffic Challenge) and was here for the Dr's cheery news.

At this time I do not know where it leave anything:     My Current Chemo  (being given, frequency, dose???)

The Tx of the Mass: Which will include Radiation  (which will then have a secondary effect on my chemo)

Other Test that may be run to look for tumors in other locations in which my pain has recently (but not to this extent) increased.

When some of the above is figured out.... I will let you know the dealy yo.

The Last Bit Of Cheery News is the numbness and lets say slight weakness the Mass has caused in my lower extremities.  I will let you know all about it in my next blog post.

It's been some kind of week.

From last Thursday until tonight it has been an interesting week.  We were supposed to go camping, however weather (3 days of heavy rain and the occasional thunderstorm) put the kibosh on 2 nights on the beach under the stars.  With luck on our side a good friend of mine allowed a limited number of persons to stay at his home (a vacation rental on the North Shore).  Prior to heading North my mom and I pick up Leigh Brezler (yes Leigh who graduated from Suburban, now living with her husband and 3 kids just outside the city of Sydney Oz). Leigh was able to visit for four days.  Leigh rounded out her stay with sight seeing, hiking Diamond Head, and shopping for souvenirs.

Somewhere along the way with my continued poor sleep habits, a cold that started on Tuesday developed into a full blown cold.  Sinus and Chest cold.  Same cold I have had 3-4 other times this year.  Now the cold would not be that big of a deal, however I have had a continuation in my back pain.  It is an assumed spinal fracture, a second fracture, a new and or worsening lesion, a collapse lesion (hence a fracture), swelling from overdoing it or a new cyst growing in that area.  It could be any of these or something else.  What I can tell you for sure is this past Monday I have took so pain medication that I was feeling no pain anywhere (except my back was still 7-8 out of 10 in pain).  On a normal day with my regular amount of meds (which is still a lot) I function with a 3-4 out of 10 pain.

So back to my cold & cough.....  Lets just say it hurts a little when I cough...  and after all the dramatic if's above the most likely scenario is that I did it to myself.  Yup lying on my back at the beach for 1/2 an hour or so sometimes propped up by my elbows.  Over did it with something that simple....  Life is like a box of chocolates 

On the up and up though.  This is good news: 2 early to mean anything solid in the Oncology World but is a nice change.  The last four times that I have had blood draw in order to evaluate my levels (to determine the need for Red Blood Cells & Platelets) I did not have to receive Red Blood Cells.  My platelets continue to be low, however are ever so slightly improved.

Ok well mom's leaves tomorrow night, and my friend Brooke (from Potland) who met up with me in Yosemite was on island over the weekend as well.  That along with the crew at the BBQ and Flowers (my roommates) (me their house mooch) for continuing to put up with me and allowing my mom to sleep in the shed, that has made it much easier for her to relax and just walk inside to help me out.  Which like my mom she did a wonderful job of doing.  Her help could not have been needed more then it has been over the past few days.  All that combined has made for one memorable week.

Be well.  I hope I can blog some pic's into the paragraphs.. "Love The house Monkey"

Another Day at the Big House

Possible Transfusions tomorrow (well later today).  I only had to receive Platelets on Monday.  They were 11 while my Hemoglobin (HGB) remained around 10 (which is good).  I have not been short of breath (which is associated with HGB and it's function to carry Oxygen) so there is a good chance I will only need to receive a platelet transfusion today as was the case on Moneay, and a slight (35%) possibility that I will not have to receive either.  I will know by 9am my time tomorrow (that's after a 7:30 am blood draw).

Pictured in today's post are a few of the items scattered around my desk that either bring a smile to my face... give me good luck / positive vibes and remind me of the people and places associated with them.  My leg has continued to improve.  Most of you know that I tore my Hamstring a couple months ago.  I have been able to walk with a cane for over a week, the pain is almost gone as well.  I need to start building up my strenght but that will be accomplished in due time. 

side not the items are not positioned on my desk in a cluster as pictured.

To keep things short I'll just say I am getting stronger.  It is not to say my chemo cycles are working.  We will not receive any verification that my cancer is improving (which it is.... thanks to you guys, chemo, and a healthy diet), but sometime in December we hope to see a sign the the # of active abnormal Meyloma cells have decreased.  This will have to be confirmed with / by / via another bone marrow biopsy.

Ok I am off to bed... just wanted to say HAPPY NOVEMBER 3RB

Would you like to see me ring that bell?

Desktop Charm.