Wow! What a week!

I know that many of you are on edge, having been faithfully praying for us all week, wondering what all the tests/procedures showed. So here goes....

First I want to start with a blessing! On Sunday, the dear Elders at our church gathered our family and prayed for us. What a blessing it was for us to see the Godly men of our church, serious in their calling, earnestly praying for ALL of us. How thankful JR and I are that they include our children too and pray for them specifically. This is NOT just about me, or JR, but our kids too. There is no "magic" in their prayer but we explained it to our kids this way: when we are weak and tired in our journey, it is a blessing to have the Godly leaders of the church surround us in prayer. We cannot express to you in words what a blessing this was to our family and what a GREAT way to start a difficult week.

On Monday I had a full body PET scan. Other than not being able to eat til its over, its not a big deal. They inject me with a sugar isotope, I wait an hour for it to circulate throughout my body (and my IPOD comes in handy) and then they do a 30 minute scan. Because I struggle with a harsh cough, I was worried about being supine (flat) for 30 minutes but I didn't cough once! Sure didn't want them to have to start the scan again! That afternoon my dear friend, Jaylynne, and her boys came over and we had a great time talking about tons of things...and just a little about cancer. She has been such a blessing to me and she helped me come up with questions for the radiation and oncology doctor, along with lots of chemo drug options. Thanks Jaylynne!

Tuesday was a busy day. We had an appointment with the radiation Doctor in the morning and it was a good meeting. It was a surprise to us that the PET scan results were already back so we asked for that discussion first. The results were mixed: the chest nodes were stable or better--GREAT NEWS! But, there were 8 very small nodes that popped up near the kidneys that weren't there before. Not so good news. Between that and the fact that my skin biopsies were positive, we know that the chemo drugs I was on were not fully doing their job. Then we moved on to radiation news. Again, a praise! Radiation is an option for me for my skin spread. The chest is resilient and can handle 100 (rads or whatever its called) and most of my left chest had 50, the incision had 75---the incision is the ONLY place where the cancer did not come back. So we know it works. However, in the doctor's experience, radiation is just a temporary measure...that lasts months...then the skin cancer will come back in areas they did not irradiate. So again, mixed news.....but the blessing is that we have options!

That afternoon I had my bronchoscopy. They give some sedation and then go down my throat with a scope and look around. Praise! There was nothing glaring at the pulmonologist---no nodes or tumors. There is something in my left lower lung that wasn't on the CT scan 2 weeks ago but showed up on the PET--it could be infection, inflammation or cancer spread....the radiologist read it as inflammation. Because I had a chemo drug that causes me not to heal, no biopsies could be done but he did some brushings and they all came back NEGATIVE for infection. I remain convinced my cough is from inflammation from one of the chemo drugs--and only time will tell. The oncologist, however, is thinking that it is spread: lympangetic spread....

And that brings us to our oncology appointment on Thursday. JR and I went in with questions in hand and went over all the scans and reports and chemo drug options. She is looking at trying to get me approved for PARP inhibitors--they are new drugs that have been in clinical trial for triple negative cancers like mine. They will become available next year but are available now on a case by case basis for "compassionate use." I hate those words, but that's what it is. So please pray with us that I get approved for that. The Parp would be given with gemzar (which I've never had) and carboplat (which I had with radiation the end of last year). If we are not approved or the timing doesn't line up with the start of chemo I will start Ixempra and Xeloda. Ixempra is given intravenously just once every three weeks and Xeloda is a pill chemo. I have heard that Xeloda is expensive so we are praying that insurance covers it. There have been some women on the breast cancer forums that have used this combo and found it very effective....for a certain time frame....but when it comes back, the cancer is "super-charged." Which then makes it resistant to other drugs. Hmmmmm.....what to do? PRAY!! It is a praise too that there are other chemo drug options but we are starting here....gonna get hit pretty heavy but the goal is to get rid of the beast!

Many have asked me how we are emotionally doing and I will tell you that we feel your prayers! Last week when we found out the skin biopsy results, it was hard---we want to get rid of this! Not hear that it is coming back. So we had our cry then put our nose to the grindstone and said "what next?" The PET results this week weren't wonderful, it was a mixed bag, but it could have been so much worse! So we continue to press forward, thankful for OPTIONS! We find our doctors and their staff to be such a blessing to us! We did talk to the doctor and mentioned that we know that barring divine intervention, this isn't going to end well BUT we have not lost hope. She said that we were all on the same page then.

Next week we leave for a trip to the Oregon coast for 8 days. The doctor was fine with me leaving at this time and we will schedule chemo the Monday (May 10th) after we return from our trip....unless my my cough gets worse then I can come back sooner for treatment. We are praying for some much needed rest and relaxation. The weather may not be too wonderful but we always have a good time as a family hanging out in the trailer and playing games.

So once again we wish to thank you for your love, positive thoughts and prayers. We so appreciate you traveling our journey with us! I'm reminded of Proverbs 17:17 "A friend loves at all times and a brother is born for adversity." I heard a sermon once that talked about the fact that this person literally gets under your load with you and carries it with you. We KNOW that the reason that we continue to take one day at a time and feel God's peace is BECAUSE of your prayers....you are carrying our load with us....and we are forever grateful.

Update from yesterday's blog

The oncologist called this morning and the biopsies are back already--and they are both POSITIVE! This is not the news that we hoped for and it is not good news. The 2 chemo drugs I was taking obviously did not help if skin cancer came back while I was in the midst of treatment. So now we need to move onto another set of drugs and pray that it helps. I did have skin cancer with my original diagnosis and the first chemo I had did work--it got rid of it. But those drugs were extremely toxic and you can only have so much of them--there is a lifetime dose.

The oncologist also talked to me about my cough and is proceeding with referring me to a pulmonologist to make sure there isn't cancer lurking about in my airways--if there is, it can be irradiated. But I am convinced it is a side effect of the chemo. Please pray with us that it is just a side effect.

The PET scan (full body scan) is still scheduled for Monday and we are continuing to pray that there is no progression of cancer anywhere else.

Thanks dear family and friends for all your prayers, positive thoughts and love for us! I would ask that today especially you would pray for my dear hubby and kids especially. As I spoke with my aunt a little bit ago, she reminded me that I FEEL GOOD...and that is such a great blessing! The situation could be so much worse and we are forever grateful to see God's hand in our lives despite our circumstances.

SAHM I am

For the bloggers, texters and techie's among us, SAHM will be identified quickly. BUT, for those of us that aren't quite astute (like myself), it took a long time to figure out what SAHM meant (there's just too many acronyms aren't there?). It stands for Stay At Home Mom.....and since resigning my position at Sacred Heart two weeks ago, I am officially a SAHM. As many of you know (or have read in past posts), this was the hardest part of the stage IV diagnosis for me...needing to resign my position at the hospital. I didn't realize how much of a ministry it was, and how much a part of me it was, until I couldn't do it any more. I held out hope that I could do something at the hospital just a few shifts a month but my dear hubby reminded me that I need to be home and do everything possible to stay healthy and FIGHT FIGHT FIGHT this cancer. After all, I have a full time job homeschooling the kids--would that be HSM? (Home School Mom)? I don't know...and I certainly don't want to add to the list of thousands of acronyms! YIKES! So instead of looking at my change in status as a job loss, I'm choosing to look at it as a new chapter in our journey. And if I were to be totally honest with myself, I don't have the energy to go back to work, even for a few shifts a month---but I don't want to be that honest so we'll move on!

I mentioned in my last post that we were going to go camping over Spring break and camping we went! Instead of heading into Idaho (where it was going to be cold) we headed to Steamboat Rock which is outside of Coulee Dam here in Washington. We had a wonderful time and I enjoyed sitting outside in the sun reading, and when the clouds covered the sun, I moved into the trailer and sat on the couch and read--lazy, lazy days! The boys invited a friend from church to come along and the boys had fun hiking up a trail to the top of Steamboat rock several times. Katie wasn't with us. She was invited to go with some friends from church to Leavenworth which is a German town here in Washington. Two mom's went with their girls and Katie was invited and had a great time! She has never been away from us, on her own, for more than a night and she was gone for 4 nights! We thought it was going to be 5 nights when we got a call saying they were snowed in! It had snowed overnight and the ladies had difficulty getting their cars up a hill to get on the road! But all worked out and Katie came home as scheduled. It was such a blessing to us that Katie got some time away to just have fun and be with friends and enjoy herself. Everyone had a great Spring break!

The countdown to Katie's 12th birthday has been going on since before Christmas and when she got home from Leavenworth, we were in a flurry to get party supplies! Katie and I had a great day hitting many stores and we found everything we needed in about a 4 to 5 hour period--it was tiring but great fun! The boys helped design a treasure hunt throughout the house for the girls. It worked out great except Ben used north, south, east, west as clues for 6th grade girls and I didn't think that was going to go over too well so we adjusted that. We came up with 14 riddles that had to be solved to find the next "clue" and at the end of running around the upstairs and downstairs they had to put a puzzle together to find their "treasure." It was great fun! 8 girls came to the party and 7, including Kate, spent the night. They were great! They wanted to build a tent with blankets and chairs but Dad surprised them with a REAL tent--a 6 man tent that he set up in the school room downstairs. It slept 7 girls just fine! There's a ton of pix on FB--Enjoy! About 2:30am I told the girls they needed to quiet down and all but 2 went to sleep right away....but all did get SOME sleep! Katie spent so much time and energy planning the party that when everyone left it was almost a let down-- it probably didn't help that she was exhausted! But a great time was had by all! Happy 12th Birthday to my girlie girl!

And now to some updates with my treatment. In my last post I mentioned a cough that I had for four weeks. Well, its turned into an 8 week cough--ugh! A few weeks ago we took a chest xray to make sure it wasn't pneumonia and the xray was negative so they put me on a week long steroid pack to see if would make a difference. The first few days helped but then I was right back to my hacking cough. The next week we took a CT of the chest to make sure there wasn't something more serious and it showed "NO PROGRESSION OF CANCER." That is a praise! It did show some fibrosis (scarring) which was from radiation. The radiation doctor reviewed the CT scan and said it was a pneumonitis (inflammation of the lung) from radiation but it was so small that I shouldn't be having such a severe cough. He decided to try high dose steroids for 6 weeks to see if it would help. Well, today is day 7 with NO CHANGE! UGH! When I went for chemo this last Monday we noticed that my cough got worse during treatment (I had both the abraxane and avastin). In fact, I saw the oncologist after the chemo and she couldn't believe how bad I sounded. Then we started thinking that 2 weeks ago, the week we went camping, when I had both drugs, that I had a similar reaction--severe coughing for about 2 days and then it leveled out. It was still bad, but not as bad as the day of chemo or the next day. The oncologist isn't sure its the avastin but I'm fairly convinced. Some women on the breast cancer forums have complained of the same thing....when treatment stopped, they were better. So I might call the radiation doctor tomorrow and talk about stopping the steroids unless he thinks they will help in the long term--I think they should have helped by now but who knows. The oncologist talked to me about going to a pulmonologist and having a bronchoscopy (where they put a scope down your throat and look at your lungs)--but I kind of poo poo'd that idea. The main reason is because my favorite pulmonologist/intensivist works only in the hospital--she doesn't have office hours (yes, my work friends, you know who :-). And until she does, I may just have to hold off, we'll see. The WORST part of the cough is the stress incontinence it causes..for the non-medical people out there, stress incontinence is peeing when coughing. My Ben was 11 lbs 8 oz and need I say any more? One of my friends said its not his fault, its the 3 kid curse....no muscle tone. My dear, practical hubby offered to buy depends but I frowned on that quite quickly--actually it was a verbal frowning! So one problem becomes two.

And if that weren't enough I've started to have some skin changes on my left chest which was the cancerous side. A rash popped up at my bra line about 4 weeks ago and I didn't think much of it....maybe from sweat....so I treated it, and treated it, and treated it with no change. I mentioned it to the nurse a week ago and we decided to try some other cream but all to no avail. When the radiation doctor called me I mentioned it to him and I asked what a skin cancer recurrence might look like and he said it usually pops up as nodules--like feeling hard rice or a pea under the skin. Well this is a rash, not nodules. When I was in the oncologists office on Monday for chemo I showed her and she thought we should continue to treat it and if not better by next week to biopsy it....just to be sure. Well, one of the gals from the breast cancer forum emailed me that her recurrence looked like mine and its better to biopsy sooner than later because it spreads fast. So I called the office Tuesday and had a biopsy today. What a blessing it is to us to have such an "A" team of doctors who actually listen and make room in their schedule when you have a concern! Of course it couldn't be a simple, quick biopsy though. Oh no-she took two biopsies and put 3 to 4 stitches in on each one! Yikes! And to make it worse, one of the chemo drugs I just finished prevents healing so I might be living with stitches for awhile! The results should be back on Friday and we are asking that you all pray specifically that it is benign! The surgeon told me that irradiated skin is very irritable - the largest rash is in the radiation field but there are two spots that are just below it and those are a concern. So we'll see what happens. I will still have the PET scan on Monday and will have results that Thursday. So we have had a month full of scans and appointments! I think I have mentioned before that we always feel that our plate is quite full and a dear friend told me that not only is our plate full, so is our salad plate and now our dessert plate! HA!

In the midst of this suffering God continually proves Himself faithful. In Bible study we are going through 2 Corinthians and a friend reminded me of chapter 5:1-2 "For we know that if the earthly tent which is our house is torn down, we have a building from God, a house not made with hands, eternal in the heavens. For indeed in this house we groan, longing to be clothed with our dwelling from heaven...." What hope! How thankful I am that we can look beyond our circumstance to Him and what He has prepared for us! Glory to Him!