a quick note

My leg swelling has gone down.  I am not in pain all the time.  I am walking though not normally.  It is a stiff legged walk.  I can bend my leg and bare weight.  It's just the follow through holding me up.  Everyday my walk gets a little better.  Thanks for all you well wished and wish me luck with chemo tomorrow.  Peace, Kara

update

Again, it's been a long time since my last post.  The last few weeks have been rough.  I have received another 2 pints of blood due to low red blood cell count.  My white blood cells are holding steady for now allowing me to skip my nuelasta shots that stimulate my bone marrow to make more white blood cells.  I don't miss them as they cause discomfort in my bones.  I've been experiencing more left leg pain.  From my knee to my ankle, my leg swelled to about three times its size.  I have been walking with the aide of a cane or a walker and sometimes resorting to a wheelchair.  In order to diagnose this  mystery, I've had many ultrasounds to check for blood clots-zero!  I've been x-rayed to check for bone metastases activity-none!  So, what's up with the swelling?  Oh, it's a not so common side effect of the radiation reacting with my chemo drug gemcitibine.  They are playing a game called radiation recall causing a slight case of compartment syndrome in my muscles.  Compartment syndrome is fluid trapped in the muscles.  It is quite painful and can be serious leading to surgery if it does not alleviate otherwise.  So, I was given steroids to combat the inflammation which is almost gone.  The pain is still with me and I take pain meds to alleviate it.  I don't like taxing my liver in this way so I hope for this to relieve itself soon.  I am using arnica and frankincense on the area to relieve pain and inflammation as well.  I am trying to achieve the perfect balance between rest and movement.  I do not want to turn into a couch potato.  I have had two weeks off chemo due to the swelling in my leg.  Since the thought is that one of my drugs is causing it we postponed a week.  This week I will resume my next round and finish with more tests to check to progress.  A bit of excitement did happen last weekend.  By the request of my Dr. I went to the hospital late Friday night to further research the leg mystery.  My friend GB was with me and we were there in the ER for about 5 hours.  Luckily we did not have to wait in the waiting room because my DR. had been in touch with them.  The stay included more ultrasounds to rule out blood clot.  While there I got a compartment syndrome test which involves a very long, fat needle into 4 different spots of the muscle to test the pressure.  The pressure needs to be less than 30 points of the lower number of my blood pressure.  My lower number is usually between 60 and 70.  My 4 numbers were 30, 25, 16, and 5.  Verdict was unclear but leaned toward a slight case of compartment syndrome with not enough of the other symptoms to make a case for it.  The doc sent me home with a boot to wear and instructions to rest but also keep the ankle and knee moving to help pump out the trapped fluid.  I have to tell you that I am ready for some normalcy.  I hope everyone is doing well.  Give your legs a pat and say thank you for the hard work they do for you everyday.  When you lose some of you mobility, it's eye-opening! 

hello again

I hope my entry finds everyone enjoying the holiday season.  We are having a wonderful holiday.  Since my last post, a lot has happened.  After my 2nd round of chemo I underwent more CT scans and a bone scan to see what work the chemo had been doing.  The scans showed improvement!!  My tumors in my brain and lungs had shrunk.  The other metastases throughout my body were stable with no new growth.  What great news.  The only down side to this news, I would have to continue taking these two chemo drugs that are, literally, killing me at the same time they are killing the cancer.  The good days I have had in the last two months are few and far between.  I have been experiencing intense fatigue, face swelling, dizzy spells, appetite loss.....  I feel like the list could go on and on.  Most of these symptoms-minus the face swelling and appetite loss-can be attributed to my "profound anemia."  This is what they label you when your hemoglobin has dropped to a dangerously low number.  When hemoglobin drops, my body is not making enough red blood cells which means there is not enough oxygen circulating throughout my body.  We all know that oxygen is essential to life and healing.  So, this last Wednesday, when I received the last treatment of round 4, I was informed that in order to continue treatment I would have to sign up for a blood transfusion to receive to pints of blood.  For those who know me well, this is not something I want to hear much less do!  I consulted with a few people who can put me at ease in these situations and decided to get the blood.  Without it my treatments would stop allowing the cancer to grow.  To let my body catch-up would take up to 120 days.  At this point 120 days without cancer fighting drugs does not seem like a good option.  My hemoglobin is the only part of my blood in trouble.  My white blood cells  (WBC) are also dangerously low putting me at a higher risk of infection.  Never fear though, there is a drug to combat this--Nuelasta!  It is a drug that stimulates the bone marrow to make more WBC.  This shot is quite unpleasant to receive.  It can not be administered trough my port.  It is subcutaneous.  It is given really slowly to keep the irritation down; and while going in, it stings--A LOT!  I do not look forward to this shot.  I have had two shots and am scheduled to get a shot every two weeks while on treatment.  As far as receiving more blood, there is no way to know.  It may be enough to allow my body to catch-up and it may not.  This will be monitored weekly.  In the meantime, I am going to employ all the natural remedies, that I know of, to stimulate red blood cell production and combat anemia.  The face swelling I mentioned is disconcerting.  We don't know what is causing it.  My guess is allergies since chemo intensfies them.  When I wake some mornings, it looks like someone has hit both my eyes.  As the day goes, the swelling goes too.  Not only have my eyes been swelling but my ears, especially my right, is so congested that I can barely hear.  Many people have been suggesting that I take a Clariton.  I've been ignoring this advice until today.  I took a Clariton this morning.  It is 3:00 in the afternoon and I still have no relief!  I will stick to my remedies, and know they will eventually cut through the congestion.  Despite all these unwelcome symptoms, I feel most days remain positive.  I know I have to fight harder than ever now as the affects of chemo are cumulative and are taking a toll on my body.  It's up to me to keep my spirits up.  This is where all the support comes in as well.  I know all the positivity you all project is like gas in the tank!  Thank you all!  I will try not to wait so long to post.  Next week I will have more scans to see what the last two rounds of chemo have accomplished.  Let's hope for REALLY good news.  I'm meditating on:  IT'S ALL GONE!!!!  Love to you all.  Be what you love and love what you Be!

Hello, it's been a while.

Starting the 2nd round of chemo proved to be quite difficult.  I received treatment on Wednesday last week.  I was given two drugs, carboplatin and gemzar, along with an anti-nausea medication and a steroid.  The remainder of the day was okay.  Thursday, however, was not okay.  I was hit with the total body "flu-like" symptoms and crazy fatigue.  I was on the couch most of the day.  I did experience some "break through nausea" which I have pills for should it happen.  It happened a few times.  It's interesting how willing I can be to take prescriptions.  Just a year ago, it would not enter my healing realm.  Times have surely changed!  Friday, was not much better.  Even though the flu-like symptoms subsided, I started to have intense back pain--mostly lower.  Though, occasionally my whole back would hurt sending pain into my shoulder and neck.  I am not sure if I tweaked my back picking up Miko or doing some other activity.  It's also possible that the chemo caused the pain.  We don't really know where the "blame" should be placed.  I was also thinking it could have been pain from lying down all day Thursday.  Sometimes inactivity, when it's not your norm, can wreak havoc on the body.  I've never been one for resting.  So, now we'll jump to this week.  Today, I received the 2nd infusion of round two.  Only one drug administered today--gemzar.  It is the "lesser of two evils" and with fewer side effects.  I feel good right now with the exception of a few body aches.  My spine is aching a bit in the area of the metastases.  I take this as the gemzar going in and causing a ruckus.  It's doing it's job!!!!  Hopefully, next week when we retest, we find this to be true and these drugs have been doing their job, shrinking tumors and stopping any further growth.  My biggest decision to make now is which course of action to take if these drugs are not working.  I think my oncologist is pulling for MDAnderson.  I'm leaning that way depending on the details of the trial and how risky it is.  My other leaning is towards a total submersion in the natural healing of body, mind and spirit.  Most likely, it will be a combination of the two.  I just don't know if I can do more chemo that may or may not work.  As long as my blood work continues to be good--or on the good side--then I am more likely to play with uncertainty.  As of now, my blood is still hanging in there.  Of course, the white blood cells and red blood cells are taxed, but they are barely out of the acceptable ranges.  Thank you for all you continued support.  Take care.  Kara

how it's going

It's been a while since I've posted.  Today I received my second week of round one of the new chemo drugs.  I feel good, just a little tired.  Feeling good has been the norm lately.  I've been active and participating in normal routines.  The difference is no more radiation.  Radiation really took it out of me, and I am able to see that now that I'm a week out of having treatments.  I am thankful this part is behind me for now and, hopefully, for good.  Even though it is "behind" me, I am still experiencing side effects from the radiation.  The doctor reassured that the symptoms should subside within two to three weeks.  I am experiencing heigtened sensitivity to noise and light.  My right eye feels thick and congested and usually has some silvery purpleish floaters.  This can be quite annoying.  I have a pair of perscription eye glasses that I have not worn in 20 years, except for night driving long distances, that now I wear everytime I read-especially on the computer.  Along with the eye issues, the radition "fallout", so to speak, has left my hands a bit shaky which affects writing, cooking-pouring and cutting.  Lastly, another related symptom, is short term memory/recall.  Staying on task is challenging.  It takes me a lot longer to cook dinner!  So, meal time is a little later than desired.  A small price to pay, though, to actually feel motivated to cook in the first place.  I love to cook and provide for my family in that way.  Enough with radiation detour and back to chemo. I am tolerating the new drugs well.  My blood work remains to good which is important to keep infection at bay.  In order to assist my body in the ever important task of  fighting infection, I have been drinking fresh juice daily. It's loaded with veggies and fruit to stimulate the immune system and help keep my liver healthy.  Not only is liver health important, but my lung health is always at the front of my mind.  With all the tumors present in both sides of my lungs, I want to keep all ailments at bay to not further stress them.  I have noticed, since starting the new chemo, more activity with my lungs:  clearing my throat more, concentrating for deep breaths and noticing more fullness/tightness.  I am taking this increased sensitivity as a sign that the chemo is shrinking and killing tumors causing my lungs to labor.  I am willing this chemo to do it's job and stop this beast.  I am finding a way out!  Next week will be an off week, meaning I will not receive a chemo infusion thus ending round one.  I will resume the following week for round two.  After round two we will probably repeat scans to see all the progress we have made.  At that time, a decision to continue these drugs or to trial at MD Anderson would be made.  May you all be happy and healthy!  Much love and peace, Kara

update

Well, only two more whole brain radiation treatments.  Yeah!!!!  I do not like radiation and will not be sad to see it go for now.  This week we added radiation treatment to my bone met.  These sessions will extend to monday.  I am not as apprehensive of these as it is not my brain.  I am experiencing a lot of pain in my leg since we have added this treatment.  The doctor says there can be increased pain/aggravation due to activivty on the tumor.  I met with my oncologist this week.  This cancer is merciless and aggressive!    I learned of new mets:  sternum, adrenals and spine.  We are starting chemo again next week.  I have a bit more anxiety/hesitation this time.  I will be taking two drugs.  My schedule will be once a week for two weeks.  I will have the third week off.  The drugs I will take are carboplatin and gemcitabine (sp).  Both are expected to be harsh on the bone marrow, platelett production and the white blood cell count.  Worries will be infection and anemia.  Also, nausea is usually more pronounced so appetite may become an issue.  My doctor mentioned that people also experience more fatigue with these drugs and tend to need long naps.  Let's hope these drugs are the ones to stop the spread and shrink the tumors.  My oncologist put a referral into MD Anderson.  There is a trial she feels I should investigate.  Tentatively, we will make the trek to Houston in the next 3 or 4 weeks.  The trial would be testing a drug that has not been FDA approved but is showing promise with triple negative tumors.  My spirits have been low the last couple days.  I feel this heavy load and am longing for some good news.  Thank you all for giving support to help carry me through these days. 

thank you a million

I want to express a huge heart-felt thank you for all you making the benefit so successful and fun. It felt good to be out among friends listening to good music, eating good food and enjoying wonderful company. It gave me some strength to pull through the weekend and has readied me for my next week of radiation. Radiation has proven to be much more invasive than chemo and takes a lot out of me. My treatments are at 10:50 A.M. each day. If you think of me during this time send me some healing light. I know all our collective energies are helpful. Again, thank you so much for your generous donations. Thank you musicians for your time and talent! Thank you Thai Fresh! Thank you, Janice for your loyal, dedicated support and for organizing the wonderful event! Without you all, this road is too overwhelming. Thank you for all the shoulders to lean on!