Tuesday, December 23, 2008

Our Visit to UCSF

Hello, Friends! Merry Christmas to all!

I had a great two weeks off of medication, feeling like I fully recovered. I visited the podiatrist and he shaved off some of the extra skin that was giving me fits on the bottoms of my feet, cleaning up some of the hard, core areas, in hopes that I will not have such pain on the next round of meds. He advised wearing or buying shoes with a better arch support, to take the pressure off of those areas. I also enjoyed a bit of pampering from a friend in the form of a pedicure.

I started the second round of medication last Friday and am doing well so far. If the side effects are no worse than last time, I will do just fine. The only thing I notice right now is that the pads of my fingers feel just a little bit numb.

Matt and I visited UCSF yesterday afternoon and met with a Urologic Oncologist by the name of Dr. Charles Ryan and a 'fellow', whose name eludes me, who is training with him. They asked a lot of clarifying questions after reviewing my files, and looked at the scans I had brought for them. Then they both came back and shared with us what their thoughts were. To begin with, the fact that I am only 45 (yes, 'only'!), and was in good health before all of this is a really good thing. The other good thing is that the cancer that was removed was considered 'garden variety' and mine, though large, did not seem to go anywhere else and affect any other areas of my body. I'm sure many of you are asking, "Well, what about the spots in your lungs?" Well, the good doctor shared that generally speaking, anything that is less than a half-centimeter is difficult to even test to prove if it is cancerous. So while he is not discounting that they could be, it is not at the top of his list as far as concerns. (They can also be something that stems from living in the valley, which is not uncommon.) Of more concern is the mass that remains near my right kidney. While that also has not proved to be cancerous, the fact that it is there and not doing anything is not necessarily a good thing. Dr. Ryan has asked to present my case to the Tumor Board at UCSF to see what they think of the tumor and what a plan of attack might be. He will also be talking to a surgeon about the possibility of removing it. The surgeon will be looking at what would need to be removed along with it, the possibilities being my remaining adrenal gland, and depending on how it is attached, a portion of my kidney or of my liver. Those are unknowns for now, and more may show up on the next scans.

So...to begin with, I will finish this round of the Sutent. During the two weeks I am off of it, I will go to UCSF for a blood test and scans of my chest, abdomen and pelvis, then meet with Dr. Ryan and hopefully the surgeon to get the results of the scans and from the Tumor Board and the surgeon. The rest depends upon those conversations.

Matt and I felt good when we left UCSF, in that everything that was discussed made sense, and overall there are many good options ahead for me. As we all know, there is no cure for cancer, and in kidney cancer, there is only 15-20% chance of response to treatment, and 5% chance of complete recovery. However, I know Someone who can take it all away, should He choose, and I am standing in the knowledge that that is always a possibility. Please believe with me.

As we enter the last days before Christmas, I want to leave you with something I read in a wonderful book. It is a poem titled "Let the Stable Still Astonish", by Leslie Leyland Fields.

"Let the stable still astonish;
Straw--dirt floor, dull eyes,
Dusty flanks of donkeys, oxen;
Crumbling, crooked walls;
No bed to carry that pain,
And then, the child,
Rag-wrapped, laid to cry
In a trough.
Who would have chosen this?"

"Who would have said" 'Yes.
Let the God of all the heavens
And earth
Be born here, in this place'?
Who but the same God
Who stands in the darker, fouler rooms
of our hearts
and says, 'Yes.
Let the God of Heaven and Earth
be born here-
in this place.'"

If you know our Savior, you understand. If you don't, please let Him into your heart. He's listening for your knock. He came to earth just for you.

Merry Christmas, Danene
December 23, 2008

Wednesday, December 10, 2008

Round One is Over!

Hello, Friends,

Last Thursday night was my last night of taking the first round of Sutent. I am on a 14 day break now! It's amazing how good that feels mentally and physically. I've slowly seen the side effects go away-no more hot, hard spots of pain on the balls of my feet, the sores in my mouth and throat are gone, my blood pressure is back to a more normal rate, and every little scratch or sore on my hands is not bright red. I also have a lot more energy first thing in the morning and throughout the day. The only thing I am still feeling is the sensitivity on the surface of my tongue.

I saw my family doctor today, as I have a cold and the impulse now and then to cough (so will use the inhaler as needed), and he reviewed the blood test I had last week. Everything is back within normal ranges excepting my platelets which are slightly low. He was pleased with how healthy I look.

I will start the next round of Sutent on the 19th, for 28 days, then have a CT scan following that to see if there is any improvement on the spots in my lungs. (Matt and I will also go to UCSF on the 22nd to meet with a specialist in the Urologic Oncology Dept.) One of the hardest things, I'm sure for any person in my situation, is taking this medication knowing what it might do to me physically, but not knowing if it will do what we ultimately are praying for. Just one more instance of trust.

I know it is past Thanksgiving, but I was asked to share what I am thankful for at our church's Thanksgiving morning service, and I wanted to leave you with what I shared. I've thanked all of you for consistent and fervent prayers, told you about my nurses and doctors, and now need to share about my family. Words cannot completely suffice, but this is what came from my heart that morning:

I’ve always had what I consider a blessed life, but when cancer became a part of my life I decided it was time to count those blessings.

I am blessed to be married to a man who has stuck with me for 21 years through the good, the not-so-good, and the unknown, who tells me daily that he loves me-and means it, and who loves Jesus as much as I do.

I am blessed with three children that touch my heart daily, that have helped me grow into the mom I am, and who I hope know that as much as I love them, Jesus loves them even more.

I am blessed with a mom and a dad who show me in so many ways the depth of their love for me, who have always lived in a way that honors their Lord, who love my family, and who have created a place where our family looks forward to gathering.

I am blessed with a mother and father-in-law who have shown me through the years that they love me as their daughter.

I am blessed with two brothers and their families who I really like being with, who I deeply respect and admire, and who have always, but especially of late, considered it a privilege to pray for me.

I am blessed with friends-new and old-who call, write, email, and stop by to check on me, to encourage me, and to pray for whatever the need might be for that day.

But I am most blessed that Jesus loved me so much that He went to the cross instead of me; that He not only died for my sins, but that He crushed evil on that cross so that I could be assured that while a thing like kidney cancer might be a part of my life, it will never have power over it; and most of all that I have hope for the future that can only come through my relationship with Him.

I am, among all people, most blessed.

Love to all of you, Danene
December 10, 2008

Monday, November 17, 2008

And So It Begins

Dear Friends,

It has been 9 days since I started taking Sutent, and I am feeling the first of the side effects. The nurse at my oncologist's office said that the side effects will most likely begin to show around the two week mark, so I am just about there. The one I am most aware of at the moment is a sore tongue. It feels as if I burned it drinking something too hot, but it is all over the tongue, especially in the back. It makes it a little uncomfortable when I swallow food, and has the feel of being slightly swollen, but so far is managable. I also have a borderline numbness in my right leg, although the nurse called Pfizer, the maker of this med, and they concurred that this is not a normal side effect, so I will keep an eye on this that it will not get more pronounced. There could still be others, but I ask that you pray with me that they will not be bad, will be managable, or perhaps, our strong God willing, will not show up at all. I take this medication for 28 days, then am off for 14 days. I will repeat this at least for a second round before there is another scan to see if it has worked positively on the nodules in the lungs.

I am always on the lookout for encouraging verses and words, many of which I have received from many of you. This one I found in, of all things, a catalog we got in the mail. I want to share it with you as I thought it was powerful.

Cancer is so limited...
  • It cannot cripple love
  • It cannot shatter hope
  • It cannot corrode faith
  • It cannot destroy peace
  • It cannot kill friendship
  • It cannot suppress memories
  • It cannot silence courage
  • It cannot invade the soul
  • It cannot steal eternal life
  • It cannot conquer the spirit

I'm standing on faith that cancer is limited, and our God is not.

Thanks for your prayers, Danene (November 17, 2008)

Sunday, November 9, 2008

Starting Meds

Hi, Everyone!

I just wanted to let you know that I have started medication (called Sutent) for the spots found in my lungs. According to the report from the last CT scan, there are four nodules in four different areas of my lungs, all 5mm or less in size. This medication is specifically for my type of cancer and should help shrink those nodules. There are possibly some cumulative side effects, and I would ask you all to pray that either I will not have any (smile) or that they would be ones that I can manage.

We are awaiting a call from UCSF for an appointment with a doctor in their Urologic Oncology Department. My records have all been faxed and have been reviewed by a doctor, so its just a matter of waiting for them to contact me, hopefully this week.

I was reading a book this weekend, and I read a part that I thought was really well said. I want to share it with you as there might be someone you can share this with someday. The lady in the book (this is fictional, so her character) has breast cancer and is struggling. She wonders how a God who loves His children could let cancer come into their lives. Her husband shares this: "What He feels about His children having cancer, He took to the cross. On that cross He rendered evil ineffective. He took it upon Himself, and then He crushed it. Disease, sin, bad things, they haven't ceased to exist, but their power over His children has been broken. Cancer has not been abolished, but it has been overthrown."

I know that I struggle with my cancer spreading, with having to take the medication and what its side effects might be for me, and for what all of this means for my family and friends. It is easy to say that I am standing firm on Jesus through all of this, but it is not always easy to mean it in my heart. But I liked what that passage from the book said, that at the cross, God not only saved my soul, but the evil that He knew someday would infect my life. So even though I doubt and question, I know in my heart of hearts that whatever happens to me, God is there.

Have a good week, my friends, Danene
November 9, 2008

Friday, October 31, 2008

The Battle Continues...

Dear Friends,

Since the last time I shared, I have been gaining strength, venturing out more, and getting stronger in my abdomen and back. In general, I've felt great! In a past blog, I shared with you the nurses that touched my life during my stay in the hospital. I want to tell you about the wonderful doctors I've had as well. Dr. David Duncan is my general practitioner and the doctor that first put together that there was something seriously wrong with me. Dr. Peter Garbeff is my urologist and performed my surgery, sharing with us the joy that the cancer was all contained. Of course he left behind his mark in a 10" scar! Dr. Prasad Dighe is my oncologist and the one that will help us keep track of scans and of what the future holds. I have been most impressed with each of these doctors and how they have worked together to provide the best care for me.

That said, I had another CT Scan of my abdomen and chest this past Wednesday to see what was going on with the small mass near my right kidney. Dr. Garbeff had checked it out during surgery and felt that it did not show the same characteristics as the cancerous one that was removed. I received a call from Dr. Garbeff last night and Matt and I met with Dr. Dighe this morning about the results. The scan shows that the small mass is still there and has not changed since the last scan. However, there are several small tumors that have showed up in my lungs. As the doctor said, they are small enough that they look like speckles, but they are indeed cancerous, and stem from the kidney cancer. This, along with the mass in my right abdomen, will mean that I will most likely start a systemic treatment (a pill form of medication specifically for kidney cancer) in the very near future. While it is not chemotherapy, it does have some specific possible side effects, some that are mild and some that are more serious. I, of course, am not looking forward to this, but I will do what I need to do to live for my family. We also are setting up an appointment with a specialist at either UCSF or Stanford, depending on which one can see us the soonest. This will give us a second opinion, confirm what is going on, and perhaps provide us with other options.

I'm asking that your prayers continue for me and my family. While this has rocked our world again, I know that God has not changed. He still loves me, wants the best for my life, and is with me every step of the way. Satan is the one that is on the attack. Let your prayers surround my family as they all deal with what this might mean, and that they will continue to stand on the belief that this is for the glory of our Lord, Jesus Christ. We couldn't get through any of this without Him. And pray for me that I will be strong as I face the road ahead.

With love, Danene October 31, 2008

Wednesday, October 15, 2008

Here's The Latest!

Hey, Everyone, sorry it's been so long since I've updated you on what's going on in our lives. Each day I'm getting a little stronger, eating a little better, realizing I still need to rest and let others help.

Matt and I saw the urologist, Dr. Garbeff, last Friday for the last time. He was very pleased with my progress after surgery, and with the appearance of my incision (then promptly started to rip the tape off that was covering it, telling me I had to move my hand or he couldn't do it! It stung!) He again shared that it appeared that all of the cancer had been removed with the kidney/tumor, and that there was no evidence of any cancer in the lymph nodes that had been taken. He did say that because of the size of the tumor, there would always be a need for regular scans in the future to assure that it does not recur. When we asked him about this further, he shared some things that we are thankful we did not know before the surgery, as it would have been hard to trust and to go into the surgery with a positive attitude. As Matt said during the appointment, God spared us from knowing something that is more than we could have handled. Apparently just recently there was a gentleman patient of Dr. Garbeff's that presented with the same symptoms as I had that did not make it through the hospital stay after the surgery. Based on that, and my findings as well as how much my health had deteriorated, the doctors' prognosis was 9-12 months. Now...well, God took over and spared my life, there is no evidence of cancer, and based on our appointment with the oncologist, Dr. Dighe, I will not need any additional therapy as there is no cancer still to fight. He will do a scan in a month to check on the smaller mass on the right side to see if it is receding or is gone, and we will see someone at UCSF just as a precaution for the future, but I would say that I am living a miracle. I am a little overwhelmed by all of this, but if ever you wondered at the power of the Living God, just look at my life. He not only saved me through the cross, but now has spared me again. I am thankful.
Danene Edalgo 10/15/08

Wednesday, October 8, 2008

Some Good News!!!

Hey, All! We had some good news Monday evening. My urologist, Dr. Garbeff, called with the pathology of the kidney and mass. First of all, it was indeed kidney cancer, and secondly, the cancer was completely encapsulated in the tumor that was removed, with no evidence in the lymph nodes he had removed with it. So, THANK YOU, JESUS! We meet with Dr. Garbeff on Friday at 11:30, and he’ll share more details then. Matt wants to know how big the tumor was and how much it weighed, and if there are any pictures. Hmm…I’m not sure I want to see them!

Many of you have also been asking about the cough I had for months, and if I still have it or not. When the anesthesiologist came to visit me the day before surgery, for some reason I had the thought to let him know about the cough. He asked many questions, and then let me know that he wanted to treat it as asthma. So over the course of the next twelve hours before surgery, I had four deep breathing treatments with albuterol, a steroid that helps open the bronchial passages, along with another steroid to open my lungs. It worked! The only coughing I’ve done since is what goes with clearing your lungs after surgery. I came home with an inhaler, which I’ve used two or three times, but have had no other problems.

Each day is a little better than the one before. I have to remind myself to rest, and my body is still figuring out how it feels as far as my left side. I can somewhat lay on my side when sleeping, which is a nice alternative to my back, but I still get some pains in the back, so am having to take it carefully. Again, thank you for your continued prayers. During those moments when I get a little down or overwhelmed, I remember all of you who are praying for me, and it truly does lift me and take me through those moments.

Danene, October 8, 2008

Sunday, October 5, 2008

I'm Home!

Hi, Everyone, It's Danene-I'm Home! I left the hospital yesterday afternoon, looking forward to being with my family and starting to get back to normal, but also with a sadness at leaving the people that had helped me through one of the toughest times of my life. I was blessed with what I would consider to be some of the best nurses that I could have had-ones that God new I needed for those moments they were with me: Fe, who prayed with me in the night when I was having a low moment; Erika, who gave words of encouragement when something unexpected happened; June, who told it to me like it is so that I would let her do her job and take care of me with out apologies; Marion, who I had for four days and handled each situation with me in a way that made me feel comfortable and safe; the student nurse who provided me with a light moment when she was elected to give me a bath, and kind of didn’t know exactly how to begin; and our two angels, Sue, the charge nurse who first greeted me when I was admitted, put us in a private room when she saw what we were going through, was on vacation for a week, then came back the day I was discharged with a smile at my color and improvement, who you have no doubt is in charge, but opened her heart to us; and Erin, a student nurse who also was only there my first day and my last, but who cared for me with humor and efficiency, talked with me about personal things, laughed when I talked on the phone “like a teenager” with my aunt, and touched my heart with talk of her own children and the one she is expecting in a few months. When I was discharged, these two walked us all the way to the car, waved us off, and found a permanent place in my heart.

My family has been wonderful since I got home. Matt continues to help with my every need, especially finding things for me to eat, as I still don’t have a great appetite. This is something I would ask you to pray for, as I need to keep my calories up and gain back my strength, and many times nothing sounds good. He also helped me with my first shower in eleven days. Who would have thought washing my hair could feel so good! That really helped bolster my spirits. My kids are learning to adjust to mom being home, but not in the same way. They are pitching in, albeit not always wanting to, and helping with things I can’t do now.

Physically, I am working on sleeping in bed with my husband (what a wonderful thing!) and being comfortable as my side strengthens, resting, and walking to get strength. We await the pathology report on the kidney and tumor, and I will see the doctor later this week. Other than that, life goes on (thank you, Lord).

Matt and I will continue to keep you posted on what we find out, but for now I want to thank all of you for your prayers and your offers of help, your uplifting words, and sharing with us in our faith that our mighty God has spared me and will continue to work His will in my life. This has been an experience that has truly been life changing.

Sunday, October 5, 2008

Friday, October 3, 2008

Solid Food, Bring it ON!!!

Danene continues to gets better with every passing moment. This morning she was told that she gets to have clear liquids. Bring on something with some flavor (ice chips just don’t do that much for one hunger). She went for two walks today and she is getting so strong. She spent most of the day in the chair (the recliner that has been my bed the last 3-nights) sitting up. She got the great news that she will get to have real solid food on Friday.
Our kids were able to see her today for the first time since the surgery. They though that she look great. The family is doing well and the outpouring of people just blows us away. We all sometimes take for granted what we have with family and friends, but please take the time to say thanks more often.
Saturday may be the day that Danene gets to come home. There is a lot of work ahead to get her strong, but she a tough woman. She is very determined to get strong and healthy, and what she puts her mind to she gets done. Every hour of every day I see the hand of God touching her. Just today she is no longer required to have the continuous morphine drip. She now only uses it for pain when she is going to do a lot of movement. She is however getting tired of a sore back from the hospital bed. The doctor and staff are very pleased with the progress that she is making. The staff has been great and we see Jesus at work in a lot of the people that are working with her.
You all need to know that we have seen God’s work continually and Jesus hands touching the lives all around us. Just last night we found ourselves praying for someone in the room across the hall that was not doing well. There are so many people that need Gods help, so when God puts someone on your heart MAKE THE MOVE and God will bless you for it. God uses people like me and you; if you don’t move God will use and bless someone who is willing to be his hands. Danene and I have been learning a lot about just how GREAT GOD IS and about the POWER OF PRAYER. Thank you all for the prayers and thoughts that your have been offering on our behalf.

My God bless you all. Matt 12:50am 10/3/08

Wednesday, October 1, 2008

Oct. 1 update

Danene is doing very well. The pain has been getting better and she just look good. She was walking today and made to the end of the hall and back. She then sat in the recliner(my bed for the last two nights) for about an hour. He got a sponge bath and got her hair washed(big smile). The doctor said that she could have icechips (when she has one in her mouth she starts to smile and just makes my heart happy). Danene is just doing great, and has been resting well. With every hour she is getting stronger. I have been loving the time I have spent being Danene's personal nurse(she has said that I do a great job). I feel that she will be reddy to start seeing people Oct. 2. If you would like to visit her please give Velma or I a call first. I don't want to have to much traffic. All of the family is doing well and we are so thankful for all of the prayers that you have offered up to God on our behalf. Once again thank you so much for the love that you have shown to us.

Love Matt and Danene

Monday, September 29, 2008

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The Edalgos

Blog startup

The purpose of this blog to keep the friends and family informed about Danene's condition.
As some of you now know Danene and I had confirmation that she was diagnosed with kidney cancer on 9/23/08. On Thursday the 25th she was admitted to the hospital to get "tuned-up," as the Doctor said. On Monday she will undergo surgery to have her left kidney and an attached fast growing mass removed.
The mass was discovered on 9/10/08. Danene had gone in on 9/8/08 to have some blood work done for an up-coming physical, and that night Dr. Duncan called her to ask "Why are you seeing me next week?" As they talked I knew that something was just not right. After about a ½ hour conversation she was asked to have a complete blood panel and a cat scan of her abdomen and pelvic areas the next day. On the 10th Dr. Duncan called after he had a sleepless night (because he just didn't know how to tell her the outcome of the cat scans). She was told that she had a 6 x 9 centimeter mass around her left kidney and wanted us see an Oncologist.
We met with Dr. Dighie on 9/15/08 at which point he did an exam and told us that she had one of three different types of cancer. He could not be sure what type it was until more scans and testing were completed. He was leaning towards lymphoma because of the persistent cough that she has had for about 3-months. He said this was the type that would be the best one of the three to have. On the 17th she had the second cat-scan. Then the long wait started until the 22nd when the PET scan was done.
On the 19th she got what we thought was a bladder infection. The doctor on call prescribed some medicines that should help. Danene went through three somewhat sleepless nights with a lot of pain. We saw Dr Duncan on the 23rd and that is when our world was rocked. He let us know that the results were back from the PET scan and they were not good. The mass had grown to 16 centimeters and it and the kidney would need to be removed. Dr. Duncan set-up an appointment with a urologist, Dr. Garbeff @ 8:30 on the 25th.
The night of the 23rd when Danene woke me after we cried ourselves to sleep, she said that I needed to take her to the ER. The ER worked very fast because of the pain that she was in. They inserted a catheter and administered some pain meds and she was able to sleep. The catheter seemed to do the trick for a while. We even went to Meghan’s soccer game that day. And then the pain came back again and at 11:30 at night we were off to the ER. The catheter had plugged up. The blockage was due t0 blood clots. We knew that she had passed some clots before but we didn't put it all together.
The morning of the 25th we travel to Stockton after getting the kids off to school. We checked in at the Dr. Office. They took one look at Danene and took her into a room to lie down. The Dr. walked in and talked to us about her condition and said we are going to admit you to the Hospital to get "tuned-up because we are going to remove your left kidney and the mass". When he opened the door, a wheelchair was waiting and 20 minutes later she was lying in a hospital bed, IV, blood drawn, pain medication, and 2-units of whole blood and a night with some sleep. She was feeling better. The next day Velma said that she looked pink again and had a little more energy.

I would like to thank all of the families and friends that have taken the time to pray and help our family at this time of need. Please remember that Danene is in God's hands and we are letting God direct us. Danene and I can feel the loving arms of God our Father because of the prayer that you are offering up.

May God Bless You All,

Matt and Danene Edalgo 9/28/08