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!

exhausted

hello, everyone! I am so tired today and feel like my body has been put through the wringer. I guess it's caught up with me. I see my surgeon tomorrow for my first post opt visit. I am hoping she takes this drain line and bag off me. I want to sit freely without worrying about this drain bag. I've had a few moments of realization about the dynamics of my new body. When I look down my chest, I see my belly more then before because there is no boob to block the view. This will definitely take some getting used to. There are two things I've always had: hair and boobs. Now I have neither. So many changes to process. I have a lot of doctor's appointments this week and the plan is to refigure my chemo treatments. I am actively researching trying to find the most effective chemo against triple negative cancers. I want results. I am not going to poison my body if the cancer is not responding. I have my second round of tests and scans on Thursday. Hopefully the tumors in my lungs were being selfish and taking all the chemo. I hope everyone has a great week and keep fingers crossed that the brain scan comes back negative!!!!!

Surgery

The procedure went well. My surgeon did mention that I lost more blood then usual so to up my iron for the next few days. Once in there, she took a few more lymph nodes than expected. I am sore but not in pain. The only pain I have is concerning my drain bag which is a little plastic container with a tube that has been sewn into my skin and serves as a drain. When the tube gets clogged it causes pressure to build up at the injection site. It is easily remedied after milking the tube to free the flow. At my follow-up visit, I will probably be able to loose the drain bag. I already feel relieved the tumor is gone. Once I am completely recoverd, I plan to start doing more of the things I used to and let some normalcy return to my life. Thank you to all the visitors yesterday! I loved having you there. I was dischared this morning. I'm glad to be home. Peace to you all, Kara.

September 16, 2012: UPDATE

I will have surgery Friday the 21st. At which time my right breast will be removed to rid my body of this out-of-control tumor once and for all. Surgery, at this point, does not extend my survival rate. It only improves my quality of life which I believe, by default, extends survival rate. I am completely freaked out about being put to sleep. However, I know the outcome will only make life more "normal" as I will be able to move more freely. So, I am, everyday, allowing the fear to be replaced with trust and comfort in knowing that good awaits me on the other side of surgery. My surgeon said no muscle will be cut and I have enough good, healthy tissue the closure should be easy for her. I am not opting for reconstructive surgery at this time. I want to heal first and decide later. I will resume chemo treatments the first week in October. The last week in September, I will repeat CT and Bone scans to see if existing tumors have shrunk. If no tumors have responded to chemo. We will revise the treatment plan. As far as how chemo affected me this week, I have been mostly unaffected. I had a couple of days of not wanting to eat and general fatigue, but no major ill side effects. My mom will come Thursday through Sunday. Keith's mom will be here Friday through the night. My surgery requires an overnight stay. Keith will also be home Friday night but I'm sure will wecome the grandmas' support as we have to arrive at the surgical center by 5:30 A.M. on Friday. This center is at Far West and Mopac. Today is shaping up to be relaxing but productive. We've had a really nice visit with great friends. I have to tell you guys that come for visits how much I appreciate them. Since we don't really get out socially, having friendly visits make me feel connected. Thank you! I look forward to them every week. I hope everyone has a fantastic week and enjoys this badly needed rain!

the latest info

So, I met with my oncologist, Dr. Wright, today. A lot of the same: my blood work (labs) are all good. As usual the only low numbers are my red blood cell counts. However, they are just barely below the low range. So, after my treatment last Thursday, I had an incredible headache--crazy headache. I refer to this type of headache a "baseball bat headache" because a baseball bat to the head would feel better. This headache has been ongoing since last Thursday but it dips and swells in strength. I do not particularly like living with headaches! I also experienced great fatigue this week keeping me mostly resting until Monday. This put a great strain on Keith in his efforts to be mom and dad and housekeeper. My appetite was almost nil but I did manage to keep my weight right at 158. I've been 158 since I started chemo. I feel if I can keep my weight on, it will help me through all the drug therapy. I did have anohter leg pain episode which started a few days before I received my treatment on Thursday. This is inconsistent with the last leg pain episode which seemed to happen after treatment. Again Dr. Wright ordered an ultrasound, to rule out blood clot. She also ordered xrays of my entire left leg and lower back to try to diagnose this pain. The ultrasound was negative--no blood clot!! That is good. We want no extra problems at this point. The xrays however showed a tiny lesion on my left leg that is a metastases. Mystery solved. It is cancer that is causing the leg pain. This does not change my treatment nor does it complicate it. It is simply more information. As Dr. Wright ut it today, "This bone met(metasteses) is bottom of the worry list." Essentially, it is just more to monitor. Dr. Wright is ordering that my orginal xrays, taken after a suspicious area showed up on bone scan at the end of July, be examined again and compared to the current xrays. We want this to be an oversite and not new growth. She is also ordering another round of CT and Bone scans at the beginning of October. This time she is adding my brain to the order to rule out metasteses to the brain since I am experiencing so many headaches. I am honestly scared to find the results of a brain scan. I so do not want cancer in my brain. On another note: All the support that continues to flow our way is beyond helpful. You guys are sustaining us right now and allowing the space we need to try to get through this. The last couple of weeks have been really challenging. I know there are more challenges to come. I have been more emotional lately and feeling more discouraged and a bit overwhelmed. Then someone comes over for a visit or we get food or we get $ to pay bills and I remember that we are not alone in this fight. You all are there too. I appreciate all your energy, time, prayers and meditations. Sincerely, without it "throwing in the towel" becomes a visiting thought in my mind. Then, through the power of the combined strength of us all, I keep going. I want to watch my kids grow up and continue life. I want to be here for them. I want to be here for Keith and all of you. Thank you alll so much. I love you all. Tomorrow I have my 2nd treatment of the 2nd round. Wish me luck! If I feel well tomorrow evening, I will go to Chuy's around 5:30 and then to Shady Grove. Hope to see many of you there. Peace, Kara Oh, Janice buzzed my head. It feels wonderful and I really like the look. I will try to attach a photo.

1st treatment, round 2

So, last week I had an "off" week as I did not receive a treatment. I felt normal. Well, as normal as one can feel when he or she has cancer. I like to think of it as my new normal. I must admit that last week I was feeling rather angry and tired of my new path. I pushed through since my energy levels were good. I may have worked too hard. Sunday my leg started hurting again. I was experiencing the same pain in my leg as I did a few weeks ago. My leg is still hurting--so badly that I am walking quite strangely and with a lot of pain. Keith talked me into taking a some pain medication last night and I was able to get some sleep. I really do not like taking anything extra as chemo is giving my liver enough extra work. On that note, though, my blood work looks really good. Everything is normal except my red blood cell numbers; but they are barely low so nothing to sweat yet. Also, my tumor marker number has dropped over 100 points. Tumor markers are not definitive cancer markers but provide another way to watch trends. Tumor markers are substances like protein or hormones that are present in blood or urine. Ideally the higher the marker the more cancer in body and vice versa. Upon my first blood test 6 weeks ago, my marker was 295 (normal should be below 40). Now, I am in the 170's! This is encouraging. Please keep sending all of your wonderful thoughts and prayers. I know it is helping. I received a beautifully crafted blanket that many hands helped to make and used it to keep me warm in the infusion room today. I could feel the loving energy that went into my blanket. Thank you all!!!! It is beautiful. My hair is falling out so rapidly now, that tomorrow I will probably shave it off. I am ready for the new look. Right now, other than my leg pain and a splitting headache, I feel good. Hope you all have a wonderful week and weekend. Get ready, some cooler weather is heading our way!