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Monthly Archives

September 2012

Olympian US Soccer Midfielder Shannon Boxx raises awareness for lupus

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Shannon Boxx lupus

Five years ago Shannon Boxx, a midfielder on the U.S. women’s soccer team, was diagnosed with lupus.  After hiding her diagnosis,  Shannon decided to come out of the lupus closet last year so she could help educate others suffering from our fate.

“I didn’t want to be different. You keep those things quiet,” Boxx said. But “I just realized it was not working. It’s worth talking about it; giving my voice and using my voice to bring more attention to it.

On Saturday, Boxx gave more than her voice, organizing a team of family, fans and friends such as Abby Wambach to join some 5,000 others on a three-mile fundraising walk around Exposition Park. Shannon’s group raised more than $5,500 for the Lupus Foundation of America.

“It feels good to know that you’re not alone,” Boxx said. “This walk is all about the unity of the community.”

via Olympian Shannon Boxx rallies support to Lupus Foundation – latimes.com.

A love letter to my white blood cells

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Dearest White Blood Cells,

Oh you pesky little buggers that keep me alive and free from nasty infections.  I never really thought of you much and that was wrong of me.  A terrible oversight that makes my heart ache and my mind tense from the thought of what life could be without you.  Alas, at this time, I am running low on you guys and I realize the enormity of my misplaced affections.

I miss you so much that I shall stay indoors in the safety and comfort of my own home in the hopes that you will return to my body and protect me from the evils of this world.  I promise that I will not enter another man’s cove and mistakenly touch his doorhandle.  I assure you that I will keep my lair clear of friends and foe (especially Scott Foe) that may bring harm to my Heavenly temple.

I shall wait here patiently for you to return.  I wish you safe voyage and a pledge a large celebration upon your arrival home to my body.

Yours lovingly and forever,

Nerdgirl

I lied. A chemo followup. Hilarity and pain ensue.

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So it is Saturday following the chemo that I had on Monday.

And my perspective on chemo has changed radically from the afternoon that I wrote that post after having spent 3 days in the hospital following my infusion.

I arrived home around 5:30 in the evening and felt completely fine.  My lovely friend and cultural anchor, Chris, came over to help celebrate the last of the infusions.  We were having a great time watching our trashy TV, eating our usual Monday night fare from AG Ferrari.  Then all of a sudden pain struck.  At first I thought that I had eaten too much.  But it quickly became apparent that this was not the case.  My flanks began to ache.  The onset of the pain went pretty rapidly from uncomfortable to downright hurting.  In addition to the pain, my face began to flush and swell.

We quickly Googled cytoxan side effects and found the following:

If you experience any of the following serious side effects, seek emergency medical attention or contact your doctor immediately:

  • lower back or side pain;
  • chest pain, difficulty breathing, or swelling;

We decided at this point that the best thing to do was head to the ER at UCSF.

Great, another freaking trip to the ER.  Argh.

We quickly grabbed all the things that I would need in case I was admitted.  I am becoming an expert on grabbing things in a rush to go to the hospital.

Got to the ER in about 10 minutes.  I am very lucky to live super close to UCSF so getting there is always a snap.

Walked into the ER and the waiting room was packed with all kinds of sick people waiting to be triaged.  I plopped down my ID and insurance card which I always keep handy these days and let the admissions person what was going.  It should be noted that you can’t go into a whole slew of detail with the folks admitting.  They might be nurses, I’m not sure, but they are not the ones that will necessarily prioritize you or get you much help.

Thankfully, there was a nurse sitting next to her that heard that I had had chemo that day and they immediately grabbed me and pulled me in to get vitals and story.  The nurse (or murse / man nurse) was probably the most honest that I have had in the ER and very sweet.  He let us know that that they have 39 beds, but 50 people.  But then he told me that he would put us on highest priority and went on to say that there were probably 7 people that didn’t even need to be there (ie, go see your damned doctor).

We waited about 30 agonizing minutes while the pain got worse and worse.  I couldn’t sit, I couldn’t stand.  My back was aching to high hell.

Finally they got me a bed and a room.  I saw the ER resident that I had seen on the last trip – Dr Max (who by the way is a young, hot doc) – rolling into another room so when my doctor came in to get the story, I asked her if I could have Max again because with my complicated story, I felt that to get the background data would take a long time.  She said that she would find out if he could do it and left.

Meanwhile, I continued to squirm in pain.  It was getting worse.  My mom was doing her best to comfort me while looking completely helpless and sad.  I can’t imagine how it feels to see your child (no matter what age) be in pain like that, but from her face I could tell that it is a horrible thing that no parent should have to go through.

Mark showed up around 11pm and graciously took the helm so that my exhausted mom could go home and get some sleep.  It was then he who did his best to comfort me.  One thing can be said about him and that is that when in a crisis he is one of the best remedies.  For me, at least.  I don’t know what it is, but he goes into stand-up comic mode which is both raw and extremely funny.  When you are sitting in a room feeling like you are about to die there is something to be said for laughing through the pain.

The pain began worsening.  It had now moved from my sides to my upper thighs.  It was a dull, but hardcore ache that wouldn’t go away.  I was literally writhing in pain.  It is funny because you always read that expression in books or hear it on movies, but I had never experienced it.  Until now and the only thing I could think was “writhing in pain” as a way to describe it.

Then the vomitting started.  Every lovely bit of dinner.  And more.

With all of this pain going on, I also needed to empty my bladder.  And, yes, emptying my bladder consists of self-catheterizing.  Sadly, because I was shaking so badly I was unable to complete this mission on my own accord which left me only one other option and that was to get a nurse to do it for me.  This was nothing new to me and at this point I have left any potential shame behind me when it comes to hospital folks viewing the nether regions.

In comes Nurse Carli (yes, like iCarli and don’t think we didn’t actually have a conversation about this) to milk my bladder.  But she only ended up taking a urine sample which obviously didn’t empty the bladder completely.

Fast forward to who knows how long later and I tell Nurse Aaron (a dude, obviously) that I really need to be cathed.  Nurse Aaron, by the way, is a young, hip looking dude who I can immediately tell that I like by his relaxed and cool demeanor.  The exact kind of nurse you might expect to find in San Francisco, but not what you would picture as a nurse (and not gay either).  Aaron gets his supplies and starts to go to work while Mark is busting jokes left and right (completely inappropriate jokes).  Nurse Aaron is laughing his ass off while attempting to insert a catheter into my urethra.  I’m laughing and writhing in pain while this man nurse is digging around mah stuffs.  Nurse Aaron says that he can’t get it in.  He says he has “never missed”.  He tries 4 different trays before finally admitting defeat and deeming my urethra worthy of a Guinness Book of World record for hardest to cath and goes off to find Carli to see if she can defeat the urethra from hell.

Carli and Aaron stand outside the door talking and a bet ensues.  No lie.  Carli comes in and we start to laugh about the bet that she is confident that she can win.  She tells me that Aaron deems himself “the vagina whisperer” and we both agree that this is clearly where he going wrong since the urethra is not the vagina.  Team Girls!

Carli gets up in my business while Nurse Aaron is standing behind the curtain waiting for sounds of relief.  No sounds come.  Everyone seems unable to make this happen.  My bladder is damned full.  This is the point that Nurse Aaron comes back in the room.  I have had some pain killer by IV but it is again wearing off and I’m feeling not so hot again.  We decide to use the tiny catheter that we used for the urine sample and are able to insert that while I am sitting there.  So picture the scene…

Me sitting on a hospital gurney in agony.  Mark standing on my left side making jokes.  Nurse Carli standing on the right side of me with her hands all up in my beeswax.  A spotlight shining brightly right in my crotch.  Nurse Aaron standing at the end of the bed.  My urine going into a bucket with a tiny catheter sticking out of my urethra which Carli calls “your little wee wee”.  Me in pain.  All of us laughing and joking at the ridiculousness of this scene.  And then Dr Max pokes his head in and looks completely disturbed and slightly embarrassed because my legs are spread over the handrails of the gurney and he basically has the money shot in his face.  He ducks out and we call him back in.  He seemed to hesitate, but reluctantly joined the cathing party.  Yes, there were now 4 people standing in this room having a conversation with my netherregions in their face.

It has to be said that trips to the ER are neither pleasant, nor enjoyable.  But this particular one consisted of the most pain I have ever had in my entire life with one of the funniest experiences I have ever had.  Thank you, Nurse Aaron, Nurse iCarli and Dr Max for appreciating our sick senses of humor and joining in the party.

Around 4am I was given an IV of Benadryl to help stop the swelling and rash on my face, neck and back.  This coupled with the dilaudid made me pass out.  Poor Mark stayed up and kept a watch on me.  They had told us that I would be admitted for a day or so of observation and that we were just waiting on a room.  I woke up around 7am still in the ER and still waiting for a room.  My mom had come back and Mark had gone home to get some sleep.  Changing of the guards again.  Finally I was taken up to my room.

And it was there that I stayed for the next 3 days being poked at and prodded.  The only fun I was having was when I was given the dialudid by IV.  If you can call that fun.  They also started giving me oxycotin.  I hated it.  It made me sleep and sleep.

At the end of the 3 days the determination was that I had had a bad reaction to the chemo (DUH!) and that I had a urinary tract infection which is pretty common in people who cath and are immunocompromised.  I was put on antibiotics and sent home.

And here I am.  At home.  The three days felt like a month.  I came home and found myself checking things in the refrigerator that I had bought on Sunday because it seemed like they should have gone bad.  That is how hospital time works.  One day can be an eternity and when you come out it feels like you are back at the bottom of a really big hill that you have to climb up yet again.

I am feeling good again – as good as I can feel these days – and my spirits are up.  With every trip to the hospital or every unexpected turn of events I find myself getting more and more sentimental and contemplative.  I went to the farmer’s market yesterday at the Ferry Building in San Francisco and sat on a bench looking around at all the people.  It made me teary-eyed.  My feeling was one that went from a deep sadness for my situation to jealous of all the people to joyous and back to sad.  An endless loop of confusing emotions.

Then a little girl, whose dad was organizing bags on the bench next to me, looked at me with an inquisitive face as I was sitting there with my cane and my medical mask covering my face.  I said hello to her and she immediately brightened up and gave me a smile and said hello back.  Then she asked, “Why do you have your face covered up?” in the sweetest and most innocent way that only a child could ever do.  I replied, “So that I don’t get sick.  Isn’t that crazy?!?”.  She looked back at me and gave a little giggle and said, “Yes.  That is crazy.”

Yep, folks, that is how this goes.  Life is crazy, but damn it, it is a beautiful thing.

 

Mystery Diagnosis – Transverse Myelitis

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If you want to know what happens when you get transverse myelitis and how confusing it is for doctors to diagnose this rare disorter that I also have, this episode of Mystery Diagnosis gives you a pretty accurate account of what was happening to me in the hospital the first trip in June.

Thankfully, I was in hospital already when my TM finally struck, so once it hit things moved pretty quickly to diagnosis from that point.  Of course, I barely remember any of this because I was so sick and on so many pain meds at this point.

What happens at chemo?

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I bet some of you are wondering what actually happens at a chemo session.  So I figured I’d break it down for you.

I am lucky because I only have to do my treatment every 3 weeks.  There are people that come in days in a row for weeks or longer.

Here is how it typically goes.

You show up and check in.  You are given a folder of your orders and you take them down to a box in the corridor and put the folder in and wait to be called.

When your name is called, you weigh in and the nurse takes your vitals.

You are given a wrist hospital name tag with your information.  I guess this is so a nurse doesn’t screw up and give the wrong toxic meds to someone.

Depending on if there are seats available you will either be asked to wait or directed to a room.

I have been in the two group rooms at UCSF transfusion center.   One of these is split in two with 3 beds in each of the half rooms.  They are full hospital beds. These rooms are pretty tight.  The nurses play music (K-FOG) in these rooms which makes it a little more cheerful and lively. The other room is larger and has 5 seats and 2 beds.  The large room is really quiet.  Slightly more depressing, but you have more room to breathe.

Every time you come you are assigned your personal nurse who will take care of you the entire time.  The nurses are so amazing.  They are really kind and caring to all their patients.  They do their best to make you comfortable by bringing you snacks (graham crackers and saltine crackers), water or warm blankets.

Then you get to the stickin part.  Your nurse will go through your instructions with you of what drugs you are going to get that day.  And then you get attached to your IV and drip.

My order is:

  • Saline for hydration – 1 hour
  • Solu-Medrol – 1 hour
  • Mesna – 20 minutes
  • Cytoxan – 1 hour
  • Lupron injection in the butt.  This is meant to protect me from becoming infertile from the chemo.

It is a pretty boring experience.  I usually take a snack along and a bunch of electronics to keep me entertained.  in fact, I am writing this blog post from my chair with my feet up.

You would also think that it might be fairly depressing being surrounded by a bunch of sick people.  It isn’t.  Everyone seems pretty OK with their situation.  Either they do chemo a lot or they have accepted their illnesses.  I know that I have accepted mine and think of these chemicals being dumped into my body as something that will be healing.

Thankfully I have not had side effects from the chemo because I am on a lower dose than a cancer treatment, so I can’t say that chemo would always be this agreeable.

And, that my friends, is the chemo experience that I have had.

Healthy Health Update

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2012 08 22 20 52 05

It is September and the weather in San Francisco is beautiful, if not a little chilly.  I have been slowly getting back to work and finally last week spent an entire 40 hours on the computer.  Yes, not all of it was spent productively working away, but at least my stamina is coming back.

Tomorrow (Monday) is another round of chemo.  It should be the last round if all the blood work comes back healthy, so fingers are crossed.

On the transverse myelitis front I am having a good amount of pain that radiates from my lower spine and downwards.  I attribute this to nerve sensation coming back, so I believe that this is a good thing.  Previously my butt was basically numb.  There are some other complete downers to the nerves coming back apart from the pain, but I will spare folks those details.  Let’s just say that spinal cord injuries are a total bitch.  I should basically be looking at up to a few years of nerve healing to make it from my spine down to the tips of my toes.  It is said that nerves heal about 1mm a day, so nerves from lower spine to toe is about 500mm.

On the brain seizure front things seem to be good. No new seizures. I have adjusted well to the dilantin medication.  I am no longer as fatigued as I was when I first started taking it.

One issue that I am currently having is with some beta blocker medication that was prescribed to me for tachycardia (rapid heart rate).  It is making my Raynaud’s Syndrome (cold ass hands and feet) much much worse. It is also making me feel a bit dizzy.  I guess a visit to the cardiologist is in order.  Yay.  Add another doc to my list.

All in all I am feeling pretty darned good.  My brain is finally functioning well again.  My spirits definitely continue to be up.  I have been spending a lot of time with family and friends and I really really believe that it has been speeding the healing process along.  I am trying my best to have a good laugh every day (and a good cry).

That is all for now.  I’ll check in post chemo Monday!

 

Summary of things…

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My mood changes like the San Francisco weather these days.  I can go from happy and hopeful to sad and fearful in about 2.4 seconds.  I think you can tell from my trash can what mood I was in this morning.

I should be sponsored by Kleenex for tissues and Walgreens for medications.

And I’d like to thank Arlie for cheering me up this morning by telling me to watch the paralympics for inspiration.

Things you probably don’t know about transverse myelitis

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Not that I would expect anyone to know a whole lot about transverse myelitis, but here is more information on the spinal inflammation that I have and why I walk with a cane these days.

By Kevin Weilacher

1. It is a cousin disorder to Multiple Sclerosis. http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/project_restore/conditions/

2. Fairly rare disorder, only 2-5 people per million get it. http://www.ncbi.nlm.nih.gov/pubmed/8489410?dopt=Abstract http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400871/

“The incidence of ATM is between 1 to 8 per million populations in one year.”

3. Approx. 1400 new cases a year in the U.S. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

4. Roughly 33,000 people with TM in U.S. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

5. Transverse myelitis occurs in adults and children, in both genders, and in all
races. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

6. Can be Acute (happening within hours) or Subacute (happening within days or weeks)

7. The inflammation that causes such extensive damage to nerve fibers of the spinal cord may result from viral infections, abnormal immune reactions, or insufficient blood flow through the blood vessels located in the spinal cord.
Transverse myelitis also may occur as a complication of syphilis, measles, Lyme disease, and some vaccinations, including those for chickenpox and rabies.

8. Can be Idiopathic (no known cause)

9. Typically a one time occurrence but there are some that have recurrent TM.

10. 10% or better possibility of developing Multiple Sclerosis but the possibility is fairly low if there is a normal brain MRI at TM onset…http://www.ncbi.nlm.nih.gov/pubmed/18080852

11.Most symptoms of TM are identical to MS

12.Prevailing difference between TM and MS is that lesions are on spinal nerve in TM and on Brain in MS.

13.Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.

14. The inflammation and lesion created, is caused by the bodies own immune system attacking the myelin coating of the spinal nerve.

15.The segment of the spinal cord at which the damage occurs determines which parts of the body are affected. Nerves in the cervical (neck) region control signals to the neck, arms, hands, and muscles of breathing (the diaphragm). Nerves in the thoracic (upper back) region relay signals to the torso and some parts of the arms. Nerves at the lumbar (mid-back) level control signals to the hips and legs. Finally, sacral nerves, located within the lowest segment of the spinal cord, relay signals to the groin, toes, and some parts of the legs. Damage at one segment will affect function at that segment and segments below it. In patients with transverse myelitis, demyelination usually occurs at the thoracic level, causing problems with leg movement and bowel and bladder control, which require signals from the lower segments of the spinal cord. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

16.About one-third of people affected with transverse myelitis experience good or full recovery from their symptoms; they regain the ability to walk normally and experience minimal urinary or bowel effects and paresthesias. Another one-third show only fair recovery and are left with significant deficits such as
spastic gait, sensory dysfunction, and prominent urinary urgency or incontinence. The remaining one-third show no recovery at all, remaining wheelchair-bound or bedridden with marked dependence on others for basic functions of daily living. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

17. Four classic features of transverse myelitis emerge: (1) weakness of the legs and arms, (2) pain, (3) sensory alteration, and (4) bowel and bladder dysfunction. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

18. Pain is the primary presenting symptom of transverse myelitis in approximately one-third to one-half of all patients. The pain may be localized in the lower back or may consist of sharp, shooting sensations that radiate down the legs or arms or around the torso. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

19. Patients who experience sensory disturbances often use terms such as numbness, tingling, coldness, or burning to describe their symptoms.

20. Up to 80 percent of those with transverse myelitis report areas of heightened sensitivity to touch, such that clothing or a light touch with a finger causes significant discomfort or pain (a condition called allodynia).

21.Many also experience heightened sensitivity to changes in temperature or to extreme heat or cold.

22.Bladder and bowel problems may involve increased frequency of the urge to urinate or have bowel movements, incontinence, difficulty voiding, the sensation of incomplete evacuation, and constipation.

23. Body temperature of those with TM is typically lower than a normal person.

24. Most people with TM have poor circulation even if paralysis is limited.

25.It is often difficult to distinguish between a patient with an idiopathic form of transverse myelitis and one who has an underlying condition, therefore the diagnosis is often delayed, sometimes for months or years.

26.Depression is extremely prevalent in patients with TM. http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/transverse_myelitis/longer_term.html

27.Diagnosed with a neurological examination, MRI of the spinal cord and brain, a spinal tap, evoked potentials, blood tests to rule out potential conditions that mimic TM (vitamin B12 deficiency, lyme’s disease) and causes such as viruses and autoimmune diseases. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

28. Physicians also may perform myelography, which involves injecting a dye into the sac that surrounds the spinal cord. The patient is then tilted up and down to let the dye flow around and outline the spinal cord while X-rays are taken.
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

29.No effective cure currently exists for people with transverse myelitis

30.Treatments are designed to manage and alleviate symptoms and largely depend upon the severity of neurological involvement.

31. Stem Cell research is currently the only hope for a cure for TM.

32.Transverse Myelitis is sometimes a “But you don’t look sick” condition.

33. Ringing in the ears (Tinnitus) is very common in neurological disorders..ie:MS, TM, Migraines…. http://uprightdoctor.wordpress.com/2011/01/16/chiari-malformations-and-cranial-nerves/

34. Extreme fatigue is a common occurrence in those with Transverse Myelitis. http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/transverse_myelitis/longer_term.html

35. Transverse Myelitis can possibly affect only one side of the body if the TM has been brought on by an onset of Multiple Sclerosis. http://rarediseases.info.nih.gov/GARD/Condition/7796/QnA/22164/Transverse_myelitis.aspx