Back from Vacation!

We had a wonderful but not so relaxing time at the beach. :-) After all there were TWENTY-FIVE people there! Haha! It really was a nice time. The house was lovely, with a beautiful view of the ocean from the second and third floor balconies. I had a chance to walk almost everyday, and was very proud of myself for going more than a mile up the boardwalk the first night (the part without any stores started right near our house) and was still able to walk all the way back home! Other days I took evening or morning walks on the beach or on the boardwalk, sometimes twice a day. Plus usually a trip across the dunes to the beach to watch the kids play and swim. It was a busy time with something to do morning, afternoon and evening, and I was pretty exhausted once we got back home, but it felt good to "get away from it all".

Sunday I made it through two church services for the first time and what a blessing to see a wonderful presentation of the Lighthouse Project Orphan Hosting program. Thirteen precious kids ages 8 to 15 came for an 11 day visit with families from area churches. Many of the families are interested in adopting the children that they hosted. PRAISE GOD for each and every child's time here and for the hope of a family for them. Our Anya made us so proud by talking to the Russian government official who was here with the children, and also reaching out to the 15 and 13 year old girls who were visiting, trying to make them feel more comfortable and welcome.

After a catch up day on Sunday afternoon (wow were we tired - and Charles ended up at the doctor on Monday with a sinus infection - no wonder he had a headache for a week!).... anyway, after a catch up and laundry day on Sunday it was back to the routine on Monday.

Kristen took me for my CT scan and labwork on Monday. The CT scan was a little rough - didn't know I would have to drink a "gallon" of barium! They had some trouble starting the IV to give me the contrast, then it started leaking in the middle of the scan - tons of fun! Anyway I got the results today and all is well! This was meant to be just a baseline post-op CT scan to see what everything looks like in there now that the tumors are removed. It will be used to compare future CT scans to. Although I was not too worried that any reoccurrence of the cancer would show up this soon, it was certainly reassuring to see the words "no evidence of metastatic disease" on that report!

Today (Tuesday) I saw the lung surgeon Dr Carp, and my primary doctor, Dr Haab. Oh, I forgot to mention something about the vacation...... the doctors and nurses had told me still not to drive,
not to lift more than 5 lbs, not to stretch and bend too much etc.
But they forgot to tell me not to run from water balloon games when your 3 yr old nephew decides to turn the hose on you while videotaping from the second floor balcony at the shore house! (who would have thought of that?)...... so I DID run from the hose, trying to protect the video camera of course... and I fell FLAT and HARD right on my entire incision. WOW did that hurt. This was last Tuesday. I have been very sore ever since, having a hard time sleeping again, just aching a lot, especially toward the center of my rib cage (below and to the right of the sternum). The CT scan did not show any rib fractures but Dr Carp said that they cut the cartilage of the rib cage during surgery and I likely split / cracked that cartilage when I fell. So this was a bit of a setback as I was starting to be able to do more but now need to take it back a step and re-heal a little bit. My stamina is better and I am walking more and more though, so that really is an encouragement.

My primary doctor feels I am stablized now and I don't need to come back for 3 months unless there is a problem. My blood pressure (on half the prior dose of meds) and lab work is stable. Kidney function tests are good. Anemia is resolving slowly.

Charles and I have decided that I will go ahead and take the targeted therapy, Sutent. My preference is to use Dr Keith Flaherty at Univ of Penn. He was very thorough and knowledgable when I went there for a second opinion, giving us plenty of time and care, lots of very up to date information and data, logical comparisons of the pluses and minuses of being treated now rather than "watchful waiting" as Fox Chase was leaning. He gives us no false hope though - this medication has only been proven to be effective in slowing tumor growth in more advanced Renal Cell Carcinoma patients. It has not been proven or approved by the FDA for preventing a reoccurence of Renal Cell Carcinoma in cases exactly like mine. (it is in testing phase now on similar patients though) This is called adjuvent (sp?) therapy - a "just in case there are microscopic cells trying to rear their ugly heads" approach. Adjuvent therapy is used in many other types of cancer using various meds, but has not been fully studied yet for Renal Cell Carcinoma medications. Anyway, for many reasons, we have decided that this is the best route for me to take at this time.

So, I am waiting now for a repeat appt with Dr Flaherty, and hoping to start the medication ASAP. It is pills given on a 4 weeks on / 2 weeks off cycle. I will likely need to take it for a year. Side effects are fatigue, stomach upset and diarrhea, mouth sores, a few other lovely things but not as bad as "chemo". It usually hits the hardest in the first cycle and then after that is more tolerable. So I would like to get that first cycle overwith during August before school begins. That is an item for prayer.

PRAISE GOD for our excellent medical insurance. My initial hospital bill was astronomical as I expected, and my ongoing care will be costly, but we have invested in a great Blue Cross Personal Choice policy for about 8 years now and we have no concerns about the medical bills at this time. There could be some static about them paying for the Sutent since it is being prescribed "off label" for a slightly different purpose than the FDA approval, but we are hopeful that will not be a problem.

Lastly things are falling together for the kids schooling in the fall. I have some info now on some classes that I think will work for the kids to suppliment their homeschooling and take a little pressure off me. Some things still to be finalized but I can see that God will provide what we need (duh - I am a slow learner aren't I?)

Thank you so much for continuing to read this blog - so many people tell me they read it, even though there are not a lot of comments left these days I know you are "out there" checking on me. What a BLESSING to have so many people caring for us, and caring about me! PLEASE do not stop praying. This is a nasty cancer and although at the moment I am happy to be in action mode here trying to do something about it, I know that the bottom line is that my life is the Lord's to do with as He chooses. I pray that I will remain cancer free and be able to see my children grow up and my grandkids born (or adopted!) too. Please pray with me that God will grant me that privilege and that He will use this cancer and this difficult time to grow me and mature me and use our family journey as a blessing to others.

Love,
Karen

ps - Please pray that our attorney can get our insurance company to pay this claim that they have stalled on for 2+ years!!!!!!! ARGH!!