Sunday, July 10, 2011

Glitches and Grace

Back in the VA hospital for round two of the chemo which started on July 5th. This time on Hyper CVAD without the vincristine. Guess that makes it Hyper CAD.  If things go as well this time, I'll be out of here just in time to catch a plane to Denver for a weeks visit with family and then on the the support group leaders conference in Dallas. Then I think the plan is to return to UCSF for the SCT in August.  Nothing new here bout my schedule...just as crazy as usual.

I've had few computer frustrations, and it's really put me off track with the blogging. I really wish I knew a lot more about computers. .I have a new laptop and a plug-in that was supposed to provide internet access while in the hospital.  Well, due to a couple factors, I've had no internet connection.  First, the room that I was in must have been an old X-ray room or about zombie zone...No cell service, no internet, and often the nursing staff had trouble with their computers....meantime, I'm trying to keep in touch, and hoping people don't just think I'm so wrapped up in my own drama that I've blown them off.

The wonderful staff here at the VA hospital took pity on me, and did a little musical bed shuffling to get me into a room where I am connected again. So....

To bring you all up to speed, the first round of chemo went extremely well.  I had very few of the side effects that are common.  No nausea, mouth sores, lack of energy, and my cells rebounded very quickly.  The therapy itself was very effective and the doctors were quite excited.  My freelite dropped from 4800 to 400, and the bone marrow biopsy show a the plasma cells to be down to 10%  from just the one round. The other good news is that my kidney creatine has returned to it's base line; something the renal doctors did not expect to happen.  It's all good.

On the other hand, there have been changes to adjust to.  I did experience hair loss, something I was looking forward to (in hopes I would ultimately wind up with a lush mane of hair) but it didn't fall out all over, and I still have to shave my to keep the eyelashes though.  Anyway, I shaved my head and got a wig.  I was so glad to not have hair during the 100 degree temperatures we experienced over the Fourth of July weekend.  I thought about just spritzing the top of my head with water. 

Another bit of note was that after going home between the two sessions I found myself dealing with some emotions that were somewhat alien to me.
Most people who know me would consider me a fairly upbeat and positive person.  I rarely have an occasion that I really remember being down for any significant period.  Much to my surprise and dismay, I experienced as real case of of the doldrums while on the hiatus between chemo rounds.  I found that I felt like there was a little less of me...that I could not feel things with the same intensity physically that I had, and felt as if I was wrapped in cotton batting. There was a deadening in my physical sensations, and it seemed also as if the things I was seeing were more dim, as if the light were not quite as bright.  To someone who is used to living full out, it was very disconcerting, to say the least.  I spend a couple days doing nothing but sleeping and wallowing.  The issue was the fear that the chemo had taken away part of me, and I would lose even more of myself on the next round which I knew was coming up.  For me, it was a question of quality of life.  Anyway, I admitted to a family members I was feeling depressed, and just allowed myself a good cry.
I'm not mentioning this to say "poor little me" but to let anyone going through the chemo that there is a psychological aspect that isn't always talked about.  It certainly caught me by surprise.

However, I'm glad to report that things are pretty much back to normal. The only real difference I've noticed is the neuropathy in my hands.  The constant tingling sensation is a real annoyance,  but since I'm used to doing so much with my hands, I would rather that than the deadened type.  I anticipate in talking with some others with this type of neuropathy that at some point the mind will be able to treat it like background noise.

 I'll take feeling too much over feeling too little any day!

Tuesday, June 21, 2011

Saga of a Stem Cell Transplant-How I got here

For those of you who don't know, I was diagnosed in 2003 with Multiple Myeloma. I've kept pretty busy and learned a lot along the way.  Back when I was diagnosed, the Stem Cell Transplant was about the only choice for treatment,  thalidomide was radical and brand-new, and the life expectancy was 23 months.  However, I noted that the graph of mortality did have a faint line that extended out just above the zero.  I told the doctor then....I'm on THAT line.  They told me 23 months- I promised my grand-kids to be around til they were grown.  Eight years later, here I am, still going against the odds and planning to live to 80. The new upgraded life expectancy for a myeloma patient is nearing the 10 year mark.

I elected to not have the SCT at that time, trying the new Thalidomide which worked exceeding well for me, for about 18 months, then, on to several newer drugs that kept being released in the meantime.  These all worked well until January, when everything I had available was in use and my numbers kept rising.  The critical point came in June when my GFR hit 10 with a creatnine of 4.7.  (For those who don't know- when your GFR (kidney function) is below 16 you are generally in renal failure and at 10, on dialysis.)  Oddly enough, I'm not, and it has the renal docs checking me every day and scratching their heads.

Due to the condition of the kidneys and the lack of viable treatment options, I was admitted to the VA Hospital in San Francisco on June 7th with the plan of several rounds of chemo to suppress the myeloma enough to get a collection and then on to a SCT.  This will buy a little more time for more new drugs to become available and so on.

Many of my support group members have questions about the whole process, what goes on, what happens, so I thought I'd take the time to chronicle my experiences and have it be of some benefit.  I'll try not to get too technical, and will to explain any new terms, so feel free to comment, question, or encourage!

You know what I say when they say it can't be done....just watch me!   Something perverse in my nature just loves to tackle the word Impossible!

Note for today....Doing well, feeling good, thriving.....and yes even having fun  Live from the  SFVA Hospital,


Monday, June 20, 2011

Why Sparrow Walk?

Sparrow Walk is my unique "bird-walk" through  the experiences in my life.
  I learned in college psychology there are two types of thinkers; Convergent and Divergent.
Now the Convergent thinker is logical, takes the linear approach, and is really good at getting things done.

Unfortunately, I find I am a Divergent thinker. This means that I don't just get necessarily get to point B directly from point A. (You wouldn't believe all the letters I can find between A and B)  One thought triggers another, and I am off the track on another bird-walk. 

Positives and Pitfalls- 
I'm interested in learning everything,  I consider myself somewhat of a Modern Day Renaissance Woman, with lots of interests (and yes, distractions). I always want to know "Why?" and my motto is "Question everything"

This makes it really interesting when I ask a Linear thinker why they do something a certain way.  Although my motive is insight and a desire for a new view, often asking why something is being a done certain way, is perceived as a criticism; when really I'm just intrigued by a fresh idea or new concept. Needless to say, this can cause a few problems.

Being a Divergent thinker has had me starting lots of projects in the past, but then having so many irons in the fire I never get back to finishing the first one. No, it's not procrastination, but that something else has just captured my attention.  I have finally found that the key for me is to travel with a notepad and make lists. Jot down the new thought, new idea, song lyric, invention, what-have-you, instead of being distracted from the moment. Then later I can revisit the new thought at a more appropriate time instead of just following through on the "Next Great Idea."

 Divergent thinking-great for ideas, not so great for getting things done.  But then of course, I'm the one who suggests using my high-heel to pound nails when there is no hammer at hand.  I'm adaptable and people find me entertaining because they never know what I will say....sometimes I don't even know what is going to come out of my mouth. (And I think I'd like a career in Public Speaking?)

Anyway, that's the walk part of the name....Seems like I'm off on a tangent....but about the Sparrow part...
 "Bird-walk" was already taken,  and I first thought of ChickWalk because I'm a female bird-walker, but it seemed too cutesy and trite. Suddenly, I woke up a 2 AM with "Sparrow Walk". The sparrow of the Bible is a most insignificant creature, and yet God still takes note when one falls from the sky.  He keeps everything on track.  I find this is especially true for me. He provides the discipline and direction lacking in my nature, and keeps this small Sparrow constantly in His eye.  I find under His direction, I can actually accomplish change in my small corner of the world.

Well there you have it-- Sparrow Walk.  What kind of thinker are you?  I make no apologies for my thoughts.   Let me hear yours. 

Sunday, June 19, 2011

How to make your stay in the hospital a better experience-7 suggestions

Well, sitting here enjoying my "Club MEDical Vacation" at the SFVA Hospital and a few thoughts about what makes the stay easier.

What is good about a long term hospital stay of two or three weeks?  Lots. . . 

 First, there is the club diet plan.  Having coming into the hospital a few pounds overweight (Oh, those 8 years of dex) working with the dietitian can be essential to getting things the way they need to be.  I find the food to be quite good; but I just have to eliminate some things from my tray; like the potassium and carbohydrates due to the renal function and high steroid blood sugars.  And, by time all those were eliminated, I was on about 800 calories a day.  Working with the dietitian took some time, but we finally tweaked it so that I would eat the food I could eat, and get snacks between times.  Another tip, if you have special needs, when you finally get the nutrition down right, and anticipate a future hospital visit, ask  the nutritionist for a printout. This will streamline your next stay. (Otherwise, it will take you about a week's time to get it right).

What else, oh, plenty of free time.  The key to preparing for a hospital stay is to bring all the things you think you might need to entertain yourself or make your life easier while staying in.  Most of us think when we go to the hospital we check in with the clothes we're wearing and maybe a book to read.  Now honestly, if you were going on a three week vacation, is that all you'd take?

Remember this is your "Club MED Vacation"  and in addition to all the free time, you won't have to do laundry or have all the daily responsibilities you usually do.  It's a great time to get to those projects you couldn't find time for.  I brought several craft projects and a laptop, and I'm finally starting the Blog I intended to start for the last year, and couldn't find time to squeeze in.

I thought I'd make a list of things I've found useful to bring, and things I wish I had, to make your stay more pleasant. If you arrive to find something is available, and don't need it, it can be sent home, but once you're captive, it's harder to get things in.

1) You can bring your own clothes. It is not necessary to wear the full Northern exposure gowns that the hospital supplies.  Bring pajama bottoms, sweats, whatever is comfortable.  Bring a pair of underwear for every day that you anticipate your stay.  For women, sports bras or tops are great for comfort and modesty, and don't have to  be removed for x-rays or EKG's...and they are more fashionable too.  Bring a jacket and light sweater.  I have been allowed to walk around the hospital grounds, and needed outerwear at times.  Bring a couple of hangers for anything you need to hang. Although many hospitals provide small closets with bars, often there are no hangers. And don't forget to bring a laundry bag for dirty laundry.

2) About Beverages and Snacks.  They will encourage you to drink lots of fluids while in stay.  Four pitchers of the water is about optimum.  Now, if you're like me, it's hard to drink that much plain water.  Bring your own flavorings for water.  The pour in packets that they have for water bottles are about the right size to give your water a little variety.  Pick your favorite flavors and enjoy.  If you are a tea or coffee drinker, bring whatever supplies you usually use with them. You cannot anticipate them having sugar, sweetener, creamer or Truvia, or even tea bags. Bring your own favorite tea or instant coffee. Put your supplies in Ziploc bags to conserve space.  Another thing.  If you don't bring a container to drink your beverages out of, know this, you will be drinking the water from a straw in the pitcher or paper cup about the size of mouth wash cup.  There are a limited number of hot beverage cups available, and the staff is good about bringing boiling water, but a better solution is to bring your own coffee mug, and one of the in mug water heaters.

Although many hospitals have some snacks for patients, if you have no diet restrictions, you can bring in your own snacks. Granola bars, nuts, seeds, anything in small packets works well.  You can also have a limited number of items that need refrigeration like pudding cups, yogurt, etc. The staff can mark it for you and put in the refrigerator.  Also, any whole fruits or sealed packages from the dietary tray can be given to staff for other patient use.  Just remember to pull it off before they take the tray.

3)  Personal Care.  Bring anything that makes you feel good and helps keep you clean. I brought make-up and although my family finds it foolish, I  put in on everyday. It just makes me feel better when I don't look a like I'm sick. Don't forget contact lens holders, solution, and a glass case if needed.  Baby wipes--these are great for a quick freshening up, using after the toilet, or taking off make-up.  Although showers are available, getting into the shower can be problematic if you share a room, or are attached to an IV pole.  And, of course, you have to ask for the towels.  A full bottle of a good moisturizer or lotion is another essential.  It seems no matter how high your liquid intake, your skin will still tend to dryness, and it can get quite itchy and uncomfortable.  Don't forget your toothbrush, toothpaste, shampoo, and conditioner, and a razor if desired. Many hospitals don't supply them, and it's always nicer to have your preferred brands.

4) Valuables-You can bring jewelry items, rings and earrings that you wear continually, but don't bring the occasional piece of jewelry. You can bring a purse or wallet and the staff can lock it up, but a better choice might be to bring small cash or a debit card for purchases at the local "souvenir shop". Most hospitals have a gift shop where you can make small purchases, and it's nice to get out of the room once in a while.  I've even managed to start some early Christmas shopping with unique items some gift shops carry.  Talk about killing two birds with one stone.

5) Entertainment- You can bring a laptop, DVD player, or Ipod and movies and games. Bring your cell phone. If the hospital is in a different area code than where you live, you will not be able to call long distance. If you absolutely don't have a cell phone available, often the hospital social worker can provide a calling card for outside use.  If you bring a laptop, make sure that the hospital has Internet access available. WiFi is often not available due to the security of patient records.  If your cell phone does not provide such service or requires a contract, an unlimited monthly broadband plan can be purchased from Virgin Mobile which is quite affordable and without a contract commitment.  Bring more than one project. If your stay is extended, you may want to switch around on projects. Don't forget all the things you need for your project, like scissors, needles, etc. Assemble it all in a large Ziploc bag.  Bring a note book and pens. This is useful for things that you want to remember to ask the doctor, tell family members about, or for budget planning and reminder notes to yourself about things you can't do while in hospital. If you have friends or family willing to help, your can use your notebook to delegate and remember who is taking care of what. Although you can bring books, many hospitals have a cart that will come around to patient rooms with paperback selections. I didn't bring any light reading, but did bring research books I am currently using, like "Google Blogger for Dummies"

6) Medications -Bring a list of all the medications, amounts, and times as well as any supplements you take. It's a good idea to carry this on a card in your wallet anyway. Do not bring your medications with you.  The staff will take care of anything you will need.

7) Bring an Attitude of Gratitude- Now most of us are not in our best form when in the hospital. We're grumpy, in pain at times, poked and prodded, and just generally don't feel good. Staff deals every day with patients who are rude, out of it, or just plain mean.  Certainly advocate for yourself, but be polite. Don't complain about the trivial issues and the legitimate ones will get taken care of more quickly. Ask questions, but don't whine.  They want you invested in your care without feeling sorry for yourself. Also, if you ask questions, you will be more informed and less fearful about what is going on.   If you have a real problem with a staff member, let someone know.  A nurse or CNA has no business being rude to you either, and they will assign someone else if there is a personality problem. In my experience,  I feel like I have been treated like a queen. Staff who has attended me on another shift will sometimes stop in from their current wing just to say hello. I don't often use my call button, but when I do, they come right away. Try to learn the names of your staff and address them as such. Treat them like people, not appliances.  Remember to say "Thank-you" and add a little extra, like "You do a great job, or I appreciate all you do," and mean it.  Focus on the positive.

You may not have chosen the time or the place for your "Club MEDical getaway" but you can actually enjoy the experience and make some new friends along the way.   Start planning your next vacation now!  I'd love to hear any  tips or ideas anyone else has.  All suggestions welcome!