Back to work and chemo

This month brings new surprises and a new chemo combination, halaven was added to my dual antibody therapy of herceptin and perjeta.  And so far, this mitotic inhibitor from the marine sea sponge has been a pleasure to work with.  First surprise was that it is given in a very concentrated form like 10ml over 5 minutes, so hurray less time in the infusion suite.  And secondly it has been like nothing at all, granted I'm getting over taxtotere, I've had more energy and less fatigue than I had with other chemotherapies.  I'm really hoping this one sticks and does the trick, as it is so easy to take.

As far as work goes, I'm busy getting reacquainted with flow cytometry, cell culture and science in general.  It was bumpy at first but things are looking up, and I'm settled in nicely.  Parker is loving going to daycare and we are always excited to hear the stories he spins about his day, who he played with, what they ate and what they did.  He's even learning to read, by sounding out words, we are so proud.  Thanks for all your continued prayers, I know God hears them and is working his wonders.
Kristin

Time for a break

Due to what we think is nausea and vomiting from taxtotere, I got 3 weeks off of taxotere to let the dust settle.  I'm very excited to have some time off of the big guns, although I still got the two antibody therapies on Tuesday.  My tumor marker went up a little (20 points), so not the greatest news- suggests that we'll be shopping for a new big gun soon.  Havalen will be a possibility. 
Other than that, I am back to work!  Its going well, although things are coming back to me very slowly.  I have managed to do a few experiments and they have turned out well.  Its been 2 years since I've worked so it is an adjustment.  Especially since when I left, I never thought I'd come back or be alive to come back.  So I didn't keep the best notes towards the end of my PhD.  My official title is post-doctoral fellow, very fancy title.  I am working hourly so that I can take time off when I need to for treatment or when I'm sick.  Thanks for checking in.  God bless.

All is quiet

Cool double rainbow after a good rain.

Pretty good news from the oncologist's office, my numbers are still low, however they did do a little jig and increase 15% this last month.  But overall, they are still down a bunch, so we are not worried.  The next drug we'd look into would be Havalen (aka Eribulin), which is (researchers, pay attention) a mitotic inhibitor from the sea sponge.  Go marine biology!  How cool would it be to be one of the researchers to discover they're pet sponge could treat cancer.  Well, that's pretty cool.  Anyway, no reason to worry, this little jig isn't a huge deal, only if it continues to go up, but I think its going down in the long run.  Based on how I feel things couldn't be better.  I still can jog without bone pain, but have chosen not to because it takes such a effort to go out in the cold and isn't as much fun now that I am so de-conditioned. But come spring, or a burst of energy, I can go out an run a good mile.  In the mean time I'll save my energy for running around after Parker anyway.

Getting ready for a home run!

Almost had it, way to go Parker and uncle Eric.

Parker in the vest I knitted him

My wig, I love it.

Unforseen surprises

Through this whole cancer ordeal, I never thought I would return to work, or get bored and want something more for myself.  I was in survival mode, savor the time mode, stop and smell the roses mode.  But now that I have turned a corner, I have time and the mental capacity to think what can I do with my life. It is a strange feeling and it took alot of soul searching to figure out why I was unhappy with the present.  But now that I have identified this feeling its much easier to try and tackle the problem.  It all started when I found out that I wasn't going to die anytime soon (6 months or less), and had to start thinking about my future.  I was so caught up in the present that the future had no place in my thoughts.  If I dreamed about the future, I'd go spiraling down a depression that I knew was unhealthy because chances are that I wouldn't be around to full fill any of those dreams.  On top of that I lost two friends to cancer and I assumed I'd meet the same end sooner than later.

So as of right now, I'm in the process of figuring out what I can do with my education background that doesn't involve standing on my feet, working long hours and is minimally stressful.  So its a bit of a puzzle, but I'm up for the challenge.  I've already applied to edit manuscripts from home but I have yet to hear back from them on the job.  I can't wait to use my science background.  Parker is doing great at a babysitters 4 days a week for a few hours while I get time to myself and get some work around the house done.  This is sort of a pre-preschool for him and he's doing great.  We've found the perfect preschool for him (Heritage Christian in NL) and so I am excited for him to start learning in a social setting. 

My tumor markers are down 55% in 3 months, so that means I have 1/2 the volume of cancer I had back then, amazing news and on top of this great news, we are selling the condo and have a serious offer on it, hooray!  Being a landlord was not exactly the most stress free job I've had for the past 5 years, so I will be happy to be done with it.  Thanks for all your prayers, I know they help and have made a huge difference in my life.

Happy Thanksgiving early

Despite still grieving the loss of friends health and approaching my late mother's anniversary and birthday, I have much to rejoice.  Not only did I restart jogging as the pain in my foot is 100% gone, but my tumor markers have fallen at a rate I've never seen before dropping almost 150 points in 3 weeks.  This is amazing and this deserves a moment of praise and thanksgiving to the one who grants all prayers.  He has given me reason to hope again and for that I am so thankful.

On top of this wonderful news, my sister got married to a wonderful man and is off in Italy now celebrating the start of their lives together.  Thank you to all who read, pray and think of me.  I know so many more women (and men) are suffering this horrible disease but this is a day to celebrate.

Bald and proud, I say thank you.

Saying Good Bye to a Friend

This week was one of those where I felt like the sky is falling.  First chemo on Friday took all day 9 to 5!  I had three drugs to infuse and they could not infuse them at the same time, so it was 1 hour for the first one, the observe for 30 min, infused the second one for 30 min, then finally infuse the last one for 1 hour and observe for 20, but that doesn't include all the wait times. I had to wait for a chair, wait for the doctor, wait for the drugs to be mixed and delivered.  Then God bless Saturday, it was like the calm before the storm- I felt great and we went shopping in the Amana Colonies, bought some little gifts, had lunch and saw a car show- it was a beautiful sunny day.  Then Sunday rolls around and the side effects kick in, tired, diarrhea, nausea (though no vomiting), plus the pain in my joints and foot all seam to come alive when I do nothing but sleep all day.

I was worried that I was going to be too sick to deliver a much needed meal to a dear friend, but when I texted her, if she still needed the meal I was met with a response many hours later from her husband saying she passed away.  Abbey was my inspiration.  She had endured so much, neuroblastoma as a child, then sarcoma as an adult, she had her leg amputated and had whole brain radiation as well as multiple radiation treatments to her spine and on top of it she had a large brain met removed.  She also had tumors in her lungs and on her heart, she was a true survivor and yet she found the beauty in life and rarely complained about herself.  After learning of my stage IV diagnosis, she actually cried and she comforted me.  I couldn't help but love this person who had so much to give even though it seamed she had so little herself.  She taught me alot about perspective and quality of life, she never gave up hope that she'd recover and live out her days with her husband.  And yes she married while she was in treatment and was devoted to savoring life as much as she could.  She and her husband traveled the world, too many places to count- she lived an amazing life, albeit far too short.  I will miss her chats dearly, but I will forever treasure the wisdom she imparted to me. 

Because not everyone has an Abbey in their lives I want to share just a bit of her (and my) wisdom here.  She and I shared a strong faith which allowed us to ask difficult questions and talk about the reality of our situations.  She and I do not feel that God is punishing us, we got sick out of bad luck.  We both only want our families and friends to savor life and be happy.  We both hope our husbands find peace and love again.  Neither of us believe that we will go to hell, and we both firmly believe in heaven where there will be no hurt or sadness, therefore it is my wish (and I believe her's too) to not waste time on earth fighting.  Abbey always acted as though somehow the struggles in our lives prepare us for a life in heaven, although we could not understand what that would be.  Life on Earth is meant to be enjoyed (regardless of your situation) and I want to give all my survivors permission to enjoy life to its full extent after I pass away myself. 

Scared

I won't sugar coat things this time, my emotions are raw and terrifying.  The radiation oncologist actually said when I asked her how does my MRI look, she said "not good", and then "well you know this disease isn't beatable".  Ouch, that hurt so much, because I want to believe it is, and that every disease is beatable- if it can be lived with. Diabetes isn't beatable but people live normal lives if they keep it under control.  So despite the victory of my foot pain going away, being done with radiation, I'm on pins and needles waiting to start the next one.  I hate being on nothing, it makes my mind spin thinking of all the things and ways the cancer is misbehaving in my bones.
My mind is coming up with more symptoms, more aches and pains as I wean myself off of the narcotics previously camouflaging cancer pain and treating the nerve pain from my foot.  I can only imagine what I will really feel like when I'm not taking any pain meds.  I'd always used pain as a measure of how I was doing, and I never liked being dependent on pain meds for daily activities.  If I can't function now without narcotics, I will really be upset with myself.  Hopefully some ibuprofen will do the trick if there is still some pain going around.
Now next time I post, I will hopefully be in a better place and say something like 1) No one has ever had my type of cancer before, 2) No one has ever been treated with the drugs I have been and will be treated with..... therefore why assume I will follow in anyone elses' footsteps.  I wish I could feel that way right now.
 

New game plan

So unfortunately, the foot pain turned out to be neither shingles or chemo-induced neuropathy, but instead the doctors think it is from a compressed nerve in my back (ultimately caused by the cancer growing there recently).  This data combined with a tumor marker that increased 50 points in one month really made me realize that it was time to jump ship and hold my breath as I plunged into the unknown. 

So the "unknown" entailed first getting some pain relief, to do this the radiation oncologist is going to irradiate a large portion of my SI joint in my right hip to try and hit the presumed trouble spot.  This would be alot easier if the trouble spot wasn't so elusive, as we've never been able to see or measure anything abnormal in my nerves or my pelvis.  To test my nerves I had the funnest test yet (sarcasm), its called EMG- and it measures nerve function.  To do this they either shock or stick needles into your muscles and zap you while they take measurements on a computer.  And all for nothing, as it didn't give us any information.  So we are taking a stab in the dark, hoping to find some relief if we kill off some of the cancer. This type of radiation is a much lower dose than I had to my chest wall and it will be given over a shorter time frame, only 10 days instead of 6 weeks. So it will be everyday for 2 weeks, then I get a week or two off and then we will start a new chemo regimen.

At first, the 50 point jump had me terrified, but when I look back at it and the other lab tests together, there is really only mild progression.  My other organs appear to still be healthy (although one ever knows), and the cancer seams limited to the bones.  Perhaps this was just the sort of "bad news" I needed to make me look optimistic for the next therapy.  So the next one will probably be another Her-2 therapy, trade name is Perjeta (aka pertuzumab) which is a relative of trastuzumab (trade name herceptin).  But this drug has only been FDA approved when given with a taxane (abraxane, taxotere, etc), so looks like I will be loosing my hair again.  So I'm shopping around online for a nice wig for my sister's wedding.  For years now, I'd assumed I would one day loose my hair again, so this really wasn't too much of a shock.  The biggest emotional toil is the disappointment that Kadcyla didn't last longer and that we burned up another treatment option. I have to remind myself, that it only takes 1 correct drug to make a cure..... and you have to go through lots of treatments before you find that lucky one. 

I have been fortunate in so many ways already, my cancer is slow growing enough that I will get to sample a great many therapies, one of which could be my magic bullet.  I am also very fortunate that my tumor markers didn't sky rocket, as I've heard of them being the 10s of 1000s.  I also have a very good friend whose story reminds me of how prayers are answered...... My friend was diagnosed with leukemia many years ago and at that time the best treatment option was a bone marrow transplant, so she had her siblings tested and prayed to God that he would find a match.  Well, God did not answer her prayers just how she'd have liked and there was no match that turned up and she never had that bone marrow transplant.  Instead she received a cytokine therapy that had such horrible side effects that she almost died.  She stayed on the therapy as long as she could, and just as she was about to call it quits, a clinical trail opened up and this new drug became her best friend for now over 8 years.  Notice how God did attend to her needs, but he did not answer the initial prayer of a bone marrow match, as it was not part of His will.  He had a far better therapy in mind, and he used what therapies existed at the time to stretch out her survival until the trial opened up for her.  Amazing, I love the inspiration in this story. 

Neuropathy or shingles, why does it always have to be something

Okay, I am going to complain in this entry- my foot hurts ALOT.  I came down with horrible nerve pain, extreme pins and needles, stabbing, tearing sensations in this little tiny region on the sole of my foot about 2 weeks ago.  It has me limping, waking up at night, unable to sleep, cringing with pain- I can not believe how an area so tiny can cause so much pain. 

So initially I feared it was a side effect of the chemo, God forbid as my tumor markers again fell this month (10 pts down)!  Again, Thank the Lord.   I'd hate to have to decrease or stop treatment because of this foot pain.  But now I don't care what is causing it, I just want it to stop.  My Dad suggested shingles, but I have yet to develop the hallmark rash anywhere.  My oncologist does not think Kadcyla causes neuropathy, and he is thinking that we should get an MRI done to see if a tumor is pressing on something like a nerve, but I don't follow his logic there.  It seams unlikely that a tumor in my pelvis could press on the sciatic nerve just right so as to keep my entire leg pain-free but affect a tiny region on the sole of my foot.  But he is the doctor, not me. 

So I guess I'm hoping its shingles, as that doesn't involve cancer and wouldn't interfere with my treatments.  So say a prayer tonight that I wake up with a horrible itchy, red rash on my foot in the morning, it'd be really great to continue on this therapy and not have to get an inconclusive MRI. 

"Hallelujah" (Psalm 150:1): two Hebrew words, generally rendered as "Praise (ye)" + "the LORD"

What more can I say but thank God for seeing me this far.  The Kadcyla is working.

Blank Park Zoo in Des Moines

  

My tumor markers dropped 13 points, not a ton, but just enough to demonstrate that it is working.  To all the hard working breast cancer researchers out there, all the stage IV clinical trial participants (and their families) living and passed, the doctors, nurses and technicians, thank you for paving a road for me, I am sorry that I was so impatient and frustrated with waiting.  I will try and change my perspective on "my" stage IV breast cancer to one that "is" being treated as a chronic condition.  No more whoa is me, this is just something I live with, this is not the end, I have a chronic disease of the bones.  I hope all my breast cancer sisters can get to a point where the diagnosis of metastatic breast cancer is no longer screamed but chronic disease is whispered instead.  I look forward to a world where women say... oh yeah, I had that, where statistics don't rule your life and therapies are accepted as a routine part of life. 

Part of life, my life, your life, many lives- I hope one day we can all overcome our fears.

 

 

 

 

 

 

 

 

Cheers!

At the Wilderness in Wisconsin Dells

Treatment #2 down!

So after a surprising increase in my liver enzymes and other lab tests, my tumor marker did increase 30 points after my first dose of Kadcyla (from 350 to 380), which means basically nothing.  All put together the doc thinks that this could be part of a good response, but all in all, if I feel good- go with it.  We won't know if this therapy is working for a few months, but based off how I feel- its amazing. 

I am totally off Tykerb, and am able to digest food, without having to lay down after eating, and I can  zip my pants after a snack.  Plus I can eat ice cream and yogurt again without Montezuma's revenge visiting me the next morning.  I feel so much more comfortable.

It is also wonderful being off the faslodex shots, they were such a pain in the _ss!  I did try jogging a little bit after my first dose (about a week in), and it hurt pretty bad, I had to stop and walk.  My whole hips were tender, and my gluts (where the faslodex shots were done) hurt, and on top of all that the new spot on my femur hurts a ton.  But all of that pain goes away when I walk or stop bouncing. 

So life is good.  Today I took Parker on a nice long bike ride (phew) then we went fishing and caught 11 panfish.  Good day.  So now my gluts hurt for yet another reason.  Ahhh the joys of being a pincushion.  Yesterday my infusion went totally uneventful, just long.... as I am still my doctor's only patient on this drug and possibly the first patient at the UI to receive the drug.  Because it is so new, it takes forever to enter all the dosing and insurance info into the computer, so I waited 2 hours with my i.v. in until the drug was finally delivered to my chair.  Oh well, it was worth it.

First patient to receive Kadcyla!  Whoohhoooo

 

A new adventure

First I want to say thanks to my wonderful husband and family and friends who have supported me through these turbulent times of switching therapy.  My doctor completely agreed with my desire to start TDM1/Kadcyla last Tuesday, and as of today I have been on it for 5 days, without too many problems.  It was a very long first infusion, wait for the doctor's room, then wait for the doctor, then talk with the nurse, then talk with the doctor, then schedule next appointments, then wait for a chair in chemo, then start an i.v. and wait for the pharmacist to mix the drug, then hook me up...... and finally infuse for 90 min and monitor for another 90 min to make sure I don't have any adverse reactions. 
Phew..... long day.  But next time (in 3 weeks) it will take probably half that time as they will infuse the med faster and observe shorter.

No immediate reactions at the clinic.  At home I've noticed my nose has been running more, my pain is fairly constant (but I alternate tylenol and ibuprofen which keeps it in check), and I have some burning gastritis like pain in my epigastric (inferior to the sternum) region, which could be an ulcer, irritation from the pain meds, or a mild reaction to the chemo.  Called the on-call oncologist just in case and increased my acid-reflux blocker.  At first I worried that it was my liver, as liver toxicity has been reported with this drug.  Unlikely.

I have been fortunate to start meeting some survivors as of lately who've inspired me to let go of my fear further.  I am astounded at their resilience and I hope I can inspire others with my many years of survival story too. Through Relay for Life at my church, I met a man who'd had testicular cancer and lymphoma (stage IV) 19 years ago!  I'd have never guessed- I love hearing from people like this, even if it is just a few years, it inspires me so much.  So if you too are a survivor, please post a note saying how long you've dealt with your disease and how you've defied the odds. 

As Mother's day rolls around I am reminded of my own mother who defied the odds with a similarly horrible disease, amyloidosis.  And how she overcame all the negative emotions and established a new normal which was unpresidented and lived a full ten years with the beast.  This is a disease that is often caught late, and patients usually die within a year of diagnosis.  Her diagnosis was not early, but her will was unrelenting, and she endured a bone marrow transplant, multiple chemotherapy cocktails, put up with pulmonary edema, congestive heart failure and ultimately complete kidney failure and finally dialysis.  She passed away very peacefully at home two years ago on May 4th.  She was well loved, and she and I had many in-depth conversations about live, death and our shared faith prior to all that.  We had a great relationship, and she taught me alot about living with a terminal illness.  Thanks Mom and Happy early Mother's Day.

4 generations of Buck-Schwickerath-Ness's

 

Doctors Ness and Ness beside the "Ness" conference room in 

honor of Mom's service to the clinic

This ride may be over (for now)

It has been so long since I've felt like I needed to update anyone on my health- basically over the past 2 months, I've bounced around with pain and my tumor markers were pretty much unchanged (still in the 300s however).  The pain was worst in my femur, a new hotspot apparently.  But thanks to swimming, ibuprofen and taking it easy, it hasn't been much of a problem.  But jogging was out.

I had my most recent labs drawn on Thursday last week, and the markers have now increased 15 points- which is basically mild progression.  I will receive some sort of chemo tomorrow, it will probably be my choice- do I want to try the newest and best stuff? or should I wait one more month?  I think due to the pains I've been having in my femur, the desire to avoid yet another big dose of faslodex (in the butt), and it being summer, a time to be out, enjoying life and pain-free, I'm going to call my doctor's office and request to be started on TDM1/kadcyla asap.  I am ready to give it a try.  Its scary jumping off, but I know God will catch me and ease me into a landing.  I still get to keep my hair and should have less side effects than I currently do. 

You may be thinking, well duh, no brainer- take the new medicine.  Well its not that simple, there is a good chance the new medicine will work better than the current one, but there is also a substantial chance that it won't work at all, and the cancer could grow wildly in just the first month of treatment.  In which case I could loose months of the clinical stability I have now, as we always give new drugs a few months to see if they are working.  But, I have decided that don't want to just limp along anymore, I want to jump!  I feel very strongly that God, thankfully, has set this drug before me, and all directions point to "go". 
Thanks for coming with me on my journey.  And prayers go out to all those struggling with their trials and challenges.

No changes this month

In my last entry I was trying to decide if I could read my body and "know" if my current therapy was working based off how I felt, when pains came and went.  My doctor had already shot down my hope that the 30% increase in tumor markers from the previous month was probably not a tumor flare, and it was likely progression in the bones- but we had to give it one more month to know for sure.  I didn't agree with him, I had this gut feeling that this therapy was working as my bone pain was significant early on, and then suddenly went away.  

My sister and I trying on bridesmaid dresses

Well it turns out, I do know my body!  My tumor markers fell 1 point this month, suggesting stable disease for now.  I didn't actually meet with my doctor to say "I told you so", because of the snow storm and my lil' man came down with pneumonia and I might have had influenza- so it worked out perfect that we discussed my numbers over the phone and he agreed that we need to stay on this therapy, and keep TDM1/Kadcyla in our back pocket. 

Guess who loves trains

I was thrilled!  As much as I want to be on the best drug out there, I know that I need to stick with each therapy as long as possible to ensure I get all the benefit, and don't run out of options too soon.  My insurance even sent a letter saying I was approved for the 100K/year drug, phew!  So live is great! 


I've started Parker in a daycare/preschool program 2 days a week, and I'm using part of this time to  swim laps (low impact, not weight bearing) to help with my joint and bone health.  I still have joint pain in the days following my injections, but the swimming helps. 

Parker in his snow fort

Thanks to all my friends and family for all your prayers- I know God hears them and is answering them in due time. 

I could not be happier, no one can bring me down now

After seeing my tumor marker had jumped 80 points in 3 weeks, I rejoiced- because I'm guessing that this means this therapy is working.  A month ago, I had horrible pains in my bones, I was taking tylenol and ibuprofen around the clock- I even took a narcotic at night so I didn't wake up in pain.  I thought for sure the cancer was spreading.....then like magic the pain disappeared.  No pain meds needed.  ?

I started exercising, and was feeling good for a good while.  Then a surprisingly intense muscle spasm  landed me in the ER, and was hospitalized for a day so I could get off the i.v. narcotics it took to control the pain.  But X-rays, CTs, and MRI all said it was a muscle spasm, no blood clot, no pinched nerve, and completely un-related to cancer.  Thankfully, family was able to rush in to watch Parker while I rehabilitated my weak leg, and weaned myself off all pain meds back at home.  Once again, I am pain free. 

The MRI did light up a bunch of spots, some could be active cancer, some could be healed cancer, and some were completely new.  That did get me down for a day, but then I saw my tumor markers, 30% increase, just like the last time I had a good response to a therapy!  I was so relieved and overjoyed, I then concluded that the pains I had from a month ago, must have been all those little cancer cells dying, inciting inflammation in my bones, and my immune system cleaning up the mess.  I could see the macrophages before my eyes.

My doctor didn't even believe the tumor markers, he thought it was probably increased due to progression, not a response to my therapy.  He said it was alittle late to see a flare like this, indicating cancer death.  I disagree.  He has been wrong before, and I know he is wrong again. The real test will be again in 3 weeks what the markers do.  If they plummet, then I know my body well.  If they continue to rise, I will be one of the very fortunate women to receive TDM-1, in the beginning of March.  No side effects with that one, every three weeks, I get an infusion- and we might even pair it up with pertuzumab, which my insurance provider already approved for me!  Wow two brand new anti-Her-2 drugs, and no hair loss, no side effects, and no more anti-hormonals (for awhile, maybe even a long while).  And insurance picks up the tab (we're talking $1000s/month). Either way I win, and cancer looses.

In other news, life could not be more perfect.  I may not be able to have more children, but I have the dearest, sweetest, most compassionate and cuddly little boy anyone ever had.  He kisses all my owies, he prays that Mama's medicine keeps work'n, he hugs me when I say I miss my Mommy.  Then to top it off, I have a husband that comes home from work and adores me.  He does the laundry when I'm sick with a cold, he takes me on a date when I ask, he supports me in every way possible.  These are things I never would have recognized had it not been for this thing called cancer.  So for altering my life, refocusing my goals, and bringing me closer to God, cancer, I say thank you. 

Clinically stable?!?!

So last I wrote, we were just starting Faslodex (2 big shots in the gluts) every month and continuing with Herceptin & Tykerb.  Since then I have had 2 more doses of Faslodex, each one being less painful than the last.  I did develop a nasty rash on my hip after the first dose, it was oddly only on one side and was almost the size of my hand, but it cleared up by the time my second dose was due.  After the first dose I thought I was doomed to a life of joint aches and insomnia, but over the past month- the joint aches that would keep me up at night, prevented me from exercising and made me whine about getting up off the couch have all but disappeared!  For the first time since I started anti-hormone therapy, I have no pain (at least not today).  The joint aches were manageable with 1200 mg ibuprofen, which I split into two doses, am and pm, but it was a pain nonetheless. 

We put our little man to work this winter.

At this month's doctor visit, he was not overly optimistic about staying on this therapy for very long, as my tumor markers have once again climbed from 231 to 256, but he felt comfortable saying that there was probably no major progression.  All my other lab results looked about the same, and then he said the words I will never forget.....he said I am clinically stable.  I was like "what! , how can I be considered stable if my markers are going up"?  He explained that biochemically, one test shows a very mild change (esp when tumor markers can be in the 100,000s), and I have no pain or other symptoms, so biochemically I am mildly unstable, but clinically stable!  Just hearing those words was music to my ears.  I always hung my hope and prayers on a NED (no evidence of disease) diagnosis, but this is just as good!  Who cares what the tests say- I am well!  And I guess I've been this way for many many months, but no one ever gave me a positive label like this before.  Instead I'd always been labelled as mild progression, or stage IV and incurable, metastatic- scary terms that had no sunny side.

No joke, he shoveled the whole drive!

We plan to give this therapy until the end of Feb, to see if it is working.  At which time, I will either continue on this therapy (if it is working) or try the (hopefully) newly FDA approved drug, TDM-1.  TDM-1 is in late approval stage by the FDA, and they've been very slow to get it into the mainstream, the deadline to approve or reject is Feb 21st.  We all expect it to be approved, but one never knows. 

So with this new view on my disease, I am more optimistic for a future, and want more than ever to celebrate life.  It may be a cold and dark winter- but our house is filled with nothing but smiles and joy.  This Christmas was a real blessing to us, and a good reminder of everything that God has done for us.  I am so thankful for my church, my mom's group, and all our wonderful friends and neighbors who have supported us in so many ways.

Well....shoveling snow can have lots of meanings.

Parker at Tessa's birthday party.

I wish you all many blessings in this new year, and hope that by reading my story and others like it, you will realize just how blessed all our lives are.