Things are a-changin' in our family....

Burdens.....we all have them in one form or another. In years past my main burden was one of balance--family, homeschooling, work, housework, etc... How to get everything done in so little time? I think every working mom (whether at home or outside the home) feels that at one time or another--or maybe ALL the time, who knows? Burdens come in all shapes and sizes--maybe a job loss, financial issues, family drama, etc... It wasn't until recently that I realized that cancer is a burden. Burden is defined as "a source of great worry or stress: weight. Something that is carried. " Cancer fits that definition, it is not only a burden on me, but on all those closest to me: my hubby, my three dear children, my brother and his family, my sister and her family, my extended family-aunts/uncles/cousins, and friends. Until a few weeks ago I think I had a faulty perspective on this. I thought I was the burden....not the cancer. I found myself apologizing at different times to different people, especially those close to me that are having such a hard time dealing with this. But this is a burden I'm carrying too. And its not an easy burden by any means but it affects me just as it does others but in a different way. How freeing to realize its not "me"....and I've stopped apologizing for this burden that we are all dealing with.

So although I've stopped apologizing, I've been struggling with something else....and that is giving my family and their future over to the Lord. During the "grieving" process at initial diagnosis, all the thoughts of future things run through your mind--graduations, college, careers, weddings, grandchildren, etc... Slowly the Lord has shown me that my family is in His hands and that they will be taken care of. So slowly I've been able to come to grips with the fact that I may not be here to see those milestones and I've changed the sadness from that into joy by writing for my kids. Whether its this blog, or individual journals for the kids, or a story of my life/upbringing--advice will still be given (and probably not heeded :-) but my voice will still be with them. The one thing regarding their future that I could not give up not matter how much I prayed was their schooling. My dear husband, convinced he could be superman and "do it all"--homeschool, full time work, being a single parent (not to mention he takes blood pressure medicine and has a family history of heart disease)....just tore my heart and weighed heavily on my mind. JR has been committed to homeschooling since our children were very young. We have never been opposed to public, private or whatever each family is convicted by God to do. We had our boys in school briefly in second grade and didn't have a good experience so we continued to homeschool and thankfully the Lord has blessed us with our children excelling. Well, despite my stage IV diagnosis, JR was convinced he could continue to keep the kids at home. I have found myself more tired, and with the life time need for chemo, I know my energy level is lagging and that I haven't been able to be there for the kids and their schooling as I normally am. Jr's answer was for him to help them more but he is so tired and worn out too. And as many of you know, kids are kids despite parents being tired or not feeling well and tempers can flare and difficulties arise. Can one parent really "do it all?" And what's best for the kids?

So JR and I had many, many, many conversations til 3 a.m. and he has always been adamant that he can do it.....til the last few weeks. I'm not sure if it was his good friend from Virginia who, when visiting, was kind of like "hey, this is a no brainer--you have prepared your kids, they will do fine in public school" or the fact that if I wasn't here, he wouldn't have a lot of outside homeschooling support BUT he finally decided to talk to the kids about it. So one morning he was talking with the boys and lo and behold we found out some things we didn't know. Lil RC admitted to having some very difficult months because of my coughing. Here I thought I was doing great, getting myself downstairs to do school with them, hacking my brains out all the while...but doing school nonetheless...and lil RC admitted it really stressed him out--the cancer became real and he just wanted to get out of the house! YIKES! When we discussed public school, they mentioned going to Reardan...not our local Medical Lake High school. This was an option we hadn't thought of--and it was a GREAT option. It is a small local school about 20 minutes away. One of the elder's from our church teaches there and his boys are bandmates with our boys so there is a wonderful support system already there for our boys. Their family is very dear to us and we are all going camping together in a few weeks too :-) We really saw all of this as Divine intervention.

So as a family we started to pray and asked many others to pray too. Jr took the lead and called the counselor at Reardan and experienced nothing but kindness. Long story short, the boys were able to shadow one of their friends one day, see how the school day ran, meet teachers and kids and they had a wonderful day. Once the coaches saw the size of our boys, well, lets just say there was excitement! Today the boys tested. This was the daunting part, for the boys and for Dad and Mom too. The state of Washington requires homeschoolers to administer standardized testing yearly, which we do, but this test was a bit different--it measured grade level, IQ, and any learning disabilities. And they did EXTREMELY well! I knew it went well when the tester told me what a great job I had done schooling them! The boys were so thrilled--they will enter Reardan as sophomores in the Fall!

Also, because its a small school, kids that want to play sports can be on a team. And Ben wants to play football. We found out today that he will have to play junior varsity for a year as a sort of penalty for not going to our local school. That isn't a big deal to us though because he needs to learn the game (and may need to eat some humble pie as well but don't tell him I said that :-) He got his uniform today and it took him quite awhile to get everything on with all the pads and laces but he did it! We had a difficult time finding size 15 cleats (he is 14 and 6ft 3 1/2) and the school secretary was so kind to find them and they were only $30!! Nike's 60% off--wow! We have really seen God's hand and things fall into place. Isn't it amazing when that happens?

So now we just need to continue to pray for my dear hubby. Things are a-changin' in our home and it is very hard for him. We have been spoiled going camping mid-week, skiing mid-week and with the boys in school all that will change. Jr knew that as the boys got older things would change but he was thinking it would be a few more years, not NOW! So please continue to pray, especially for my hubby as our family experiences changes.

And just a quick update on chemo before I close. I had my second dose of IV chemo on Tuesday and since I took it alone (the pill chemo is 7 days on, 7 days off and I am off this week) I am feeling pretty good--just some fatigue. The doctor visit went well, she thinks my cough is better and my skin looks better--small improvements but improvements nonetheless! We will continue this regimen til July and do another scan. Please pray that this regimen works--its so nice to go just once every three weeks to the office instead of weekly!

Ah, Vacation....then back to the real world!

Our 8 day vacation to the Oregon Coast from April 27th to May 5th went waaaaay too quickly! We left on the 27th and spent the night in Portland and visited with Jr's sister and her husband. We had a great visit with them and enjoyed a great pizza dinner at a really neat restaurant. We took a brief tour of old town Portland with its stately mansions and magnificent blooming gardens before heading back to have yummy ice cream and visit some more!

The next day we drove to Honeyman State Park and found the park to be full of ATV's as it sits right on the sand dunes near the beach. On Thursday we drove about 45 minutes away to rent ATV's to go riding on the beach. Originally, just the boys were going to do this but I thought it would be great to do this as a family. Little did I know you had to cross 12 HUGE sand dunes to get to the beach....I thought it would be a leisurely ride over flat terrain to the beach and back. NOT!!! So we each have our own ATV and got safety instructions and the "how-to ride" speech--all the men in our family had already ridden ATV's, so it was Kate and myself that were the new comers. And then we were off. We had to cross the street and go up a small hill to get to the sand dunes. Kate and I were in the back of the pack and we pass inmates working and a correctional officer and the next thing I know Katie is almost off the side of the hill! Her tire was off and she was trying to get off before the bike tumbled over the edge....NOT GOOD! JR was way ahead with the boys and I'm trying to get off my bike to help and here comes the correctional officer to our rescue! Thankfully Kate wasn't hurt, the bike didn't tumble over the edge, and after some more "how-to ride" instructions we were off. And now it was my turn for "fun." Taking one look at these HUGE sand dunes I was thinking to myself that there was NO WAY I could do it! So the boys showed me how to get to the top and hit the throttle and just let the bike ease over the edge and down the other side, like a roller coaster--UGH! So after doing that a few times and nearly having a heart attack, my dear hubby took pity on me and found easier routes. On one of these routes lil RC was guiding me around a bend and I took it too sharp and yes, you guessed it, I toppled over. I ended up under the bike, the bike was on its side and I was holding it up with my legs screaming my lungs out for my boys (thank heavens we had helmets on cause I hit my head pretty good but I was thankful we were in sand and I could just melt into it!). They of course came and got the bike off and helped me up and NO WAY was I going to get back on but I did (after some time)--after all, we weren't to the beach yet! The ride on the beach was great but then I had to brave the 12 HUGE sand dunes again. Let's just say I won't be ATV'ing any time soon. But my kids loved it....and Katie is a daredevil! Once she got used to the bike she was following the boys around! Kate and I have matching bruises from our bike injuries though (I even took pix-ha!).

Once we had ATV'd we felt that we had exhausted all we could do at that state park so we decided the next day that we would travel an hour down the Pacific Coast Highway to Beverly Beach which was right on the ocean. The drive was gorgeous! The campground was perfect and my cousin, Althea, who lives in Portland was able to join us. She hadn't seen Kate since Kate was born so that was great fun catching up. She's a nurse so of course we had tons to chat about! We found a historic lighthouse that is still in use and we were able to tour it and climb the staircase to the top. The next day we returned at low tide to go tide pooling. Kate had just finished learning about tide pools in science and was so excited to see the starfish and mussels and everything else.

Althea left on Sunday and we decided to go into the nearest town for dinner and what did we find but a Sizzler. Okay, many of you reading may not think this is a big deal but JR and I had our wedding rehearsal at a Sizzler and we hadn't seen one in years! Not only that, but my brother and his friends (when younger) were kicked out of Sizzler for eating too much shrimp on their "all you can eat" shrimp nites! Hysterical! And here we were with our 2 big boys and guess what, I think Ben ate 8 baskets of shrimp! Not sure if he tied my brother's record but he loved in nonetheless. We just love Sizzler!

Monday was our last day on the coast and we went to the Newport Aquarium. Later that afternoon we drove to Depoe Bay and did some window shopping right on the coast line. It was beautiful and fun and we didn't even buy anything! The men in our group endured us girls as we went from shop to shop oohing and aahing!

On Tuesday we left and drove from the coast to McMinnville to the Evergreen Air and Space Museum. This was a great adventure! The Spruce Goose is housed there and there is room for the Space Shuttle when it is retired! They even were building a water slide with a huge plane on top that is part of the attraction and they had just hoisted the plane on top of the slide 2 days before we arrived! Wow! We loved the history touring the Air museum and then later the Space Museum. We spent about 4 hours there but we could have been there all day! They even have Oregon's largest IMAX theatre but we didn't have time to enjoy that. That night we spent camping outside of Portland and had about a 6 hour drive home the next day.

We were so thankful for safety in travels. Driving with a 30 foot travel trailer is daunting especially in bad weather. The worst weather we hit was the last day coming home but God protected us and we made it safely. We were thankful for mostly wonderful weather during our trip. It would rain at night but we would have gorgeous days! In fact, the day we went ATV'ing the weather was questionable but we didn't get hit with even one rain drop! What a praise! We were especially thankful for the time spent together. We love to be in each other's company and we had plenty of time to talk, play games and just have fun. Again, as recorded in an earlier post, we are thankful to so many of you who made this trip possible for us--THANK YOU!

My energy level was high the entire trip and I don't think I ever even took a nap! Our schedule was booked and I was the energizer bunny. That is, til we got home. Then fatigue hit and I was beat for a few days but rebounded for Mother's day and just in time to get hit with more chemo the next day. Monday the 10th began my new chemo regimen: Ixempra given IV every 3 weeks and Xeloda (pill chemo) taken orally for 7 days then off 7 days then repeat the cycle. Well I started both drugs the same day and within 2 days I was down for the count. As many of you know I have done exceptionally well through chemo and have NEVER been in bed for a whole day--well, with the new drugs I was out for 2 1/2 days. By Thursday of that week, Kate had a piano recital and she had laid out my clothes and wig and by golly I got up and went and made it--barely! Thankfully by the weekend I was better. I'm not sure if it was the combo of doing both or if it was the effects of just one of them....guess we'll see. I was not able to get the experimental "parp inhibitors" that I mentioned in the last post--those won't be available til July. We will use these drugs til July and pray they kick the cancer so I won't need the parps. Just this last Thursday I had a 10 day follow up with the doctor and she felt that my cough was better....I went from sleeping just 2 hours at a time to having 5-6 hours at night. We tried EVERY treatment known to man including liquid morphine but nothing worked more than 2 hours except for lortab (pain pills). Then it ended up that I was taking more pain pills for this stupid cough than for my total hip replacement 3 years ago!! When we were camping I didn't care---I just wanted to mask the cough and have a good time but when we got home and found the morphine liquid didn't even work it was a bit disconcerting especially because I am so winded--I can't even walk around Walmart or Costco! Well, 10 days after chemo my doctor is hopeful that the chemo is starting to kick the cough! Now we need it to kick the skin cancer too--unfortunately the skin cancer has spread across my chest. It remains a leathery red rash. It is not painful or itchy, thankfully, but it is annoying. The visible sign of these chemos working will be the skin cancer going away. My doctor has every confidence that chemo will hit it--its just finding the right cocktail that will do it! So please continue to pray with us that my current chemo regimen is the right cocktail!

My brother lives outside of Sacramento, California and he flew up last Sunday to see us and left early Wednesday morning. As I have said before, this cancer journey is so much harder on my family than it is for me....and its hard for my dear brother with whom I share a special bond. He is so good for my kids and is such a funny guy that we just laugh and play games when he is here....and of course we EAT EAT EAT (you're lovin those extra 5 lbs aren't ya bro?). There were 2 separate occasions where we spent time alone and were able to talk heart to heart. He is in such a good place in his life now with a loving wife, beautiful 17 month old daughter, great job---I am sooo proud of him and the man he has become. I'm thankful for the opportunity to be able to verbalize that to him. Don't take times with loved ones for granted....don't leave things unsaid....make the most of every opportunity. My brother, by profession, is a funeral arranger and because I am a realist and want to do as much as I can to alleviate burdens from my family, started talking to my brother about arrangements. He could put his professional hat on, and I am able to do that too (for the most part) and I'm thankful for that time too. I liken those difficult discussions to buying life insurance....you think about the hard things and plan for them in the hopes that they are years off. By no means have I given up or stopped fighting! We are in this for the long haul!

Before I close I wanted to share a special moment I had with my Katie girl. As mentioned in earlier posts I was very worried about how this will impact my only daughter. One day when we got back from our vacation she was crying. I called her into my room and she said "Mom, I'm so overwhelmed---school, watering my garden, sweeping/mopping,etc..." I helped her prioritize and then the day before my brother arrived, Kate and I were making 8x my famous chocolate chip cookie recipe and we had time to talk. I talked to her about what had happened the day she cried and I told her that God is preparing her for something special in her future. I told her there are many people who don't know how to prioritize and she is learning those skills at a young age. In fact, I gave her a scenario from nursing: I get out of report and there are 5 people all wanting my attention- one can't breathe, one is in excruciating pain, one wants to talk to me, etc... She was able to prioritize EXACTLY who should be seen first! She then said "Mom, you know, my friends have no worries--they go to school and go to the mall and that's it." I told her that it isn't fair that she has to go through this BUT then I realized how much my life paralleled hers: at Katie's age I had hip surgery, was in a wheel chair for 6 months and when I was able to walk again I babysat my infant sister and did the housework and helped with cooking as my mom worked. Yes, it was for a different reason--my mom worked....but I grew up quick. I shared that with Kate. She knows I never had much of a relationship with my mom having grown up in an abusive home and we talked about that but I told her that God brought people into my life just when I needed them: my grandma, my Aunt Marlene, my Aunt Charlene and at different churches we were at there were plenty of older ladies to show me how to be a better wife and mother. I told her it will be like that for her too. Then she turned to me with her child-like faith and said "Mom, I just know God is going to heal you." My first thought was "uh-oh, she doesn't get it...she hasn't heard all we have been saying." So I said "but Kate, what happens if God doesn't heal me now, but waits til I get to heaven?" And she said without hesitation, "well, Mom, heaven is a beautiful place!" She went on to tell me how they had been talking about heaven at church and she said she wanted to know more! I had to just stop and remember that child-like faith! So often its easy to get caught up in the doctor visits, the medicine, the skin that's not looking well, and lose focus. And then there's the reminder of the child-like faith. Thank you Lord for my Katie girl!

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.