Thanks for the party!!
Wednesday, June 24, 2009
Forgive my indulgence
As a patient, the hardest time can often be the treatment course or the healing process. I am not a psychologist, but my five major surgeries in the last seven years have given me a unique perspective. I've struggled with writing this for many days now, but am hopeful that sharing my experience generally will help Natalee & her family. Please know that I mean no disrespect to Natalee since her condition is very different and more serious than mine is and I am not attempting to speak for Natalee. I do know that understanding how it feels to be the patient of a life-changing medical event has helped me to be more empathetic.
When I was diagnosed with hip dysplasia the day before my 30th birthday, I was crushed and in denial. I'll be honest and say that there are many days that I am still "in denial" of the reality of my condition. My first reaction was an immature "I told you that something was wrong my hip" but the reality was that I was terribly frightened about what it meant and what changes I would be forced to make. My condition is in no way life-threatening, so I cannot imagine how much more difficult this would be with a cancer diagnosis.
At the initial diagnosis as well as the surgery there is a surge of service that is so comforting. It eased so much of my burden knowing that there were so many people who could and would take care of me and my family. Each time I learned about the need for another surgery or underwent the operation, the outpouring of love and prayers helped me to feel a lot of peace. Especially during and immediately after surgery. My family was the recipient of countless acts of love and service; people brought us dinner, cleaned our house, did my laundry (yes, it was embarrassing, but I was so grateful), showed up randomly to clean gutters and mow lawns, drove our kids places, visited, sent cards and emails and called. It was overwhelming and inspiring and so very appreciated.
For me, the difficult time came about 4-5 weeks after each surgery. I would feel better since the worst of the pain had passed, but still faced a year-long recovery. I started feeling guilty about the meals that were coming to the house once I wasn't bed-bound. I was on crutches, but I was getting to go places and started to feel more mobile. I did a pretty good job of hiding any pain or discouragement I was feeling because I didn't want to be a "downer." People continually asked how I was doing, and I got tired of the honest answer being "not good," so I was always ready to smile and say that I was improving.
I was well-enough to get around, but not healed enough to do basic things like laundry or cleaning. Even though people offered repeatedly, I struggled with accepting help because I already felt like people had done enough and surely there were people with greater needs than mine. My visiting teachers were so good to me each time, and always offered to do more, but I always felt like somehow I would be taking advantage of the help.
It was very easy to get discouraged during this time because I felt like I was completely out of the loop. Life goes on for everyone, as it should, but because I couldn't do the same things and same activities, I felt disconnected. It was partly a situation of my own making, and yet I didn't know how to fix it. It sounds terribly immature, but often in group settings I felt awkward because there were inside jokes that I didn't understand (I have learned to hate the phrase "you had to be there") or experiences that people bonded over that I wasn't able to participate in. This was the time that I needed the most support. There wasn't anything new or exciting happening, just the everyday recovery experiences along with the roller coaster emotions, but I needed people to keep walking my journey with me. I was incredibly blessed all five times to have friends and family tough it out the entire time. Luckily, I'm done with the surgeries, because I don't know if they would hang around for a sixth one. :-)
I do not know if Natalee is feeling like this or not, but regardless I do know that they need us to step forward with love and encouragement now more than ever. The initial crisis has passed, but with Natalee's condition we need to continue to pray as fervently as we have in the past. We need to keep doing everything we can to keep her "in the loop" as much as she wants to be. I've been impressed with how much Natalee's friends have done for her and want you to know that your love and service are genuinely felt and mean more than you know.
When I was diagnosed with hip dysplasia the day before my 30th birthday, I was crushed and in denial. I'll be honest and say that there are many days that I am still "in denial" of the reality of my condition. My first reaction was an immature "I told you that something was wrong my hip" but the reality was that I was terribly frightened about what it meant and what changes I would be forced to make. My condition is in no way life-threatening, so I cannot imagine how much more difficult this would be with a cancer diagnosis.
At the initial diagnosis as well as the surgery there is a surge of service that is so comforting. It eased so much of my burden knowing that there were so many people who could and would take care of me and my family. Each time I learned about the need for another surgery or underwent the operation, the outpouring of love and prayers helped me to feel a lot of peace. Especially during and immediately after surgery. My family was the recipient of countless acts of love and service; people brought us dinner, cleaned our house, did my laundry (yes, it was embarrassing, but I was so grateful), showed up randomly to clean gutters and mow lawns, drove our kids places, visited, sent cards and emails and called. It was overwhelming and inspiring and so very appreciated.
For me, the difficult time came about 4-5 weeks after each surgery. I would feel better since the worst of the pain had passed, but still faced a year-long recovery. I started feeling guilty about the meals that were coming to the house once I wasn't bed-bound. I was on crutches, but I was getting to go places and started to feel more mobile. I did a pretty good job of hiding any pain or discouragement I was feeling because I didn't want to be a "downer." People continually asked how I was doing, and I got tired of the honest answer being "not good," so I was always ready to smile and say that I was improving.
I was well-enough to get around, but not healed enough to do basic things like laundry or cleaning. Even though people offered repeatedly, I struggled with accepting help because I already felt like people had done enough and surely there were people with greater needs than mine. My visiting teachers were so good to me each time, and always offered to do more, but I always felt like somehow I would be taking advantage of the help.
It was very easy to get discouraged during this time because I felt like I was completely out of the loop. Life goes on for everyone, as it should, but because I couldn't do the same things and same activities, I felt disconnected. It was partly a situation of my own making, and yet I didn't know how to fix it. It sounds terribly immature, but often in group settings I felt awkward because there were inside jokes that I didn't understand (I have learned to hate the phrase "you had to be there") or experiences that people bonded over that I wasn't able to participate in. This was the time that I needed the most support. There wasn't anything new or exciting happening, just the everyday recovery experiences along with the roller coaster emotions, but I needed people to keep walking my journey with me. I was incredibly blessed all five times to have friends and family tough it out the entire time. Luckily, I'm done with the surgeries, because I don't know if they would hang around for a sixth one. :-)
I do not know if Natalee is feeling like this or not, but regardless I do know that they need us to step forward with love and encouragement now more than ever. The initial crisis has passed, but with Natalee's condition we need to continue to pray as fervently as we have in the past. We need to keep doing everything we can to keep her "in the loop" as much as she wants to be. I've been impressed with how much Natalee's friends have done for her and want you to know that your love and service are genuinely felt and mean more than you know.
Day 42 - Good Days & Bad Days
The chemo treatment has gone smoothly some days and other days are just plain rotten. The pharmacist cautioned Sherri to make sure that Nat took her anti-nausea pill every four hours without fail, since this is a very harsh drug. The first few days she did really great and was eating and moving around. Then she felt pretty sick, was in pain with light and sound sensitivity. She slept a lot, had a fever, said that foods tasted metallic (she said that her two favorite foods, bacon and lasagna tasted horrible), and ended up losing 8 lbs. However, she is doing better now and the fever is gone so we are hoping for better days. The good news from her doctor appointment yesterday is that her white & red blood cell counts were at the top of the scale chart...yay!!
One of the things that Sherri has learned about the drug is that it attacks the fast growing cells (the cells with the fastest turnover rate). Unfortunately, besides the cancer cells, other things like hair, fingernails, skin, and the lining of the stomach are also fast growing cells, which is why chemo patients often lose their hair. With Natalee, the greater concern is that she could break out with a rash on her skin: inside of her stomach, inside of her mouth, and then of course her hands and feet. This isn't a guaranteed side effect, but it is likely to happen and would be very uncomfortable. Sherri would like us to pray that the chemo will put more energy on the cancer cells and not on her "good cells."
At the beginning of this ordeal, we requested a little bit of breathing space for the family and everyone has been very respectful of that. However, now they need less breathing room and more hugs and support. Sherri would really welcome phone calls and visits (call first:503.590.4922). If it isn't a good time, she won't answer the phone, so don't let that stop you from calling her or Natalee up to offer your love and support. These times can get lonely and discouraging now that certainty of Natalee's condition is known and the treatment course is set, so please continue to pray for Natalee and her family to be uplifted during the struggles ahead.
One of the things that Sherri has learned about the drug is that it attacks the fast growing cells (the cells with the fastest turnover rate). Unfortunately, besides the cancer cells, other things like hair, fingernails, skin, and the lining of the stomach are also fast growing cells, which is why chemo patients often lose their hair. With Natalee, the greater concern is that she could break out with a rash on her skin: inside of her stomach, inside of her mouth, and then of course her hands and feet. This isn't a guaranteed side effect, but it is likely to happen and would be very uncomfortable. Sherri would like us to pray that the chemo will put more energy on the cancer cells and not on her "good cells."
At the beginning of this ordeal, we requested a little bit of breathing space for the family and everyone has been very respectful of that. However, now they need less breathing room and more hugs and support. Sherri would really welcome phone calls and visits (call first:503.590.4922). If it isn't a good time, she won't answer the phone, so don't let that stop you from calling her or Natalee up to offer your love and support. These times can get lonely and discouraging now that certainty of Natalee's condition is known and the treatment course is set, so please continue to pray for Natalee and her family to be uplifted during the struggles ahead.
Tuesday, June 16, 2009
Day 34
Wahoo! Natalee has put on 4 lbs and her energy is increasing. She was able to attend the last day of school and zoomed all over field day in her wheelchair. I've posted pics taken that day:
She started on her medication last night (Monday 06/15). It has taken all this time to get the insurance to cover the treatment because it costs approximately $7,000 per month. In retrospect, it has been nice not having the meds covered simply because it has given her extra time to heal and strengthen before she starts down this rough road. Our prayers are needed now as much as possible that the drugs will shrink the cancer nodes and that Natalee will be able to cope with the side effects.
Wednesday, June 10, 2009
Day 28
Natalee had a follow-up appointment yesterday with her surgeon, Dr. Sanjay Krishnaswami. He felt like Natalee was recovering well. He had some concerns before the surgery that she may have scoliosis because the tumor was in the back area and was actually pushing on her spine. However, he feels like that isn't anything to worry about now, so great news. He definitely wants her to gain some weight, and Sherri says that Natalee is finally getting an appetite, so bring on the milkshakes & high-caloric foods!
They were also able to visit with her oncologist, Dr. Olsen, as well. She had some pretty exciting information. At our last visit, Sherri told Dr. Olsen that she felt inspired that Dr. Olsen needed to contact research centers in Arkansas & Pennsylvania. I remember the look on Dr. Olsen's face when Sherri said that - a combination of "I-guess-it-can't-hurt" and "is-she-crazy?"
Surprising only to Dr. Olsen, she announced that when she contacted Arkansas Children's Cancer Clinic, she learned that they are doing some breakthrough research on RCC with a drug that is being used in India & Europe. She said that Sherri's "premonitions" must be right. Dr. Olsen is going to be very active following this new drug, and she was very excited about it and will consider using it to treat Natalee. It is important that we get Natalee started on her treatment right away, so she'll start taking the Sunitinib, keeping our eyes on this new drug.
Clarification: Originally when we were learning about Nat's treatment options, we were told that RCC did not respond to traditional chemotherapy. While that is still true, the drug Sunitinib is still considered chemotherapy. Generally, the term "chemotherapy" refers to treatment of disease by chemicals, and is mostly used to describe cancer treatments. Sorry for any confusion this may have caused.
They were also able to visit with her oncologist, Dr. Olsen, as well. She had some pretty exciting information. At our last visit, Sherri told Dr. Olsen that she felt inspired that Dr. Olsen needed to contact research centers in Arkansas & Pennsylvania. I remember the look on Dr. Olsen's face when Sherri said that - a combination of "I-guess-it-can't-hurt" and "is-she-crazy?"
Surprising only to Dr. Olsen, she announced that when she contacted Arkansas Children's Cancer Clinic, she learned that they are doing some breakthrough research on RCC with a drug that is being used in India & Europe. She said that Sherri's "premonitions" must be right. Dr. Olsen is going to be very active following this new drug, and she was very excited about it and will consider using it to treat Natalee. It is important that we get Natalee started on her treatment right away, so she'll start taking the Sunitinib, keeping our eyes on this new drug.
Clarification: Originally when we were learning about Nat's treatment options, we were told that RCC did not respond to traditional chemotherapy. While that is still true, the drug Sunitinib is still considered chemotherapy. Generally, the term "chemotherapy" refers to treatment of disease by chemicals, and is mostly used to describe cancer treatments. Sorry for any confusion this may have caused.
Saturday, June 6, 2009
Day 24
From Sherri:
To all you beautiful people that have offered prayers, best wishes, warm comments, you have given great synergy through your faith and positive thoughts, THANK YOU. You have lifted our family in times when we couldn't pick ourselves up.
I know we have had wonderful miracles under God's hands, and we will see more. His tender mercies have given us so much peace, comfort and hope when it seemed impossible.
Natalee’s treatment is all-iffy. Since it is an experimental drug it may or may not work. There is a long list of side effects; some could be long lasting others that could be harsh during treatment.
These are the miracles we are asking that you pray for:
To all you beautiful people that have offered prayers, best wishes, warm comments, you have given great synergy through your faith and positive thoughts, THANK YOU. You have lifted our family in times when we couldn't pick ourselves up.
I know we have had wonderful miracles under God's hands, and we will see more. His tender mercies have given us so much peace, comfort and hope when it seemed impossible.
Natalee’s treatment is all-iffy. Since it is an experimental drug it may or may not work. There is a long list of side effects; some could be long lasting others that could be harsh during treatment.
These are the miracles we are asking that you pray for:
- That this drug will be effective on Natalee’s tumors that is in her lungs, and any remaining cells from her surgery.
- That her body can endure the treatment.
- That her body will increase in health and strength (she has lost another 8lbs. in one week).
- To protect her other kidney and that she will never have a recurrence of this cancer.
- That the tumor that was sectioned and sent to many cancer clinics will find answers for a strong cure of this cancer.
Again thank you for your continuing prayers, for your calls, concerns and most of all for the visits, it is good for Natalee.
With grateful hearts,
The Walton family
Thursday, June 4, 2009
Day 22 just a few more that wouldn't fit in the other post
maneuvering the wheelchair down all the walkway stairs
McKenna, Madeline & Nichell
Day 22 - Yesterday's meeting with the doc
Kent, Sherri & Natalee met with Dr. Olsen, Natalee's oncologist, yesterday (I hung out in the room too, so I could understand the treatment plan and be able to share it on the blog). Dr. Olsen consulted with several different doctors and cancer centers to help determine what the best course of action would be. She spoke with Dr. Brendan Curti at Providence Cancer Center, with the doctor at MD Anderson Cancer Center in Houston who is running the clinical trial as discussed earlier, as well as oncologists at the Mayo Clinic and UCSF (where they are currently running a clinical trial on the drug that Natalee will be using).
After analysis and testing on the tumor, they were able to determine that there were a great deal of VEGF proteins in the tumor, which gives them information on what the cancer's characteristics are and how to fight or supress.
Dr. Olsen decided to place Natalee on sunitinib (phonetically, it is sue-NIT-tin-ib, the brand name is Sutent). She will take 37.5 mg once a day (in capsule form), every day for 28 days. Then she will take a drug holiday for 14 days. Those two events are considered one cycle. She will undergo 9 cycles of treatment. At the end of each cycle there are tests and scans to measure and assess how effectively the drug is working.
The side effects that the doctor is most concerned about are:
After analysis and testing on the tumor, they were able to determine that there were a great deal of VEGF proteins in the tumor, which gives them information on what the cancer's characteristics are and how to fight or supress.
Dr. Olsen decided to place Natalee on sunitinib (phonetically, it is sue-NIT-tin-ib, the brand name is Sutent). She will take 37.5 mg once a day (in capsule form), every day for 28 days. Then she will take a drug holiday for 14 days. Those two events are considered one cycle. She will undergo 9 cycles of treatment. At the end of each cycle there are tests and scans to measure and assess how effectively the drug is working.
The side effects that the doctor is most concerned about are:
- hand-foot syndrome
- diarrhea
- high blood pressure
Some other side effects could include:
- nausea
- skin discoloration
- it could make her hair lighter in color
- altered taste
As a result of the side effects, Natalee will have to limit her involvement in basketball and volleyball. :-( She needs to keep her body protected from any activity that is jarring on her bones.
Natalee has three separate groups of enlarged nodes, two on her left lung and one on the right lung. At the beginning of the second cycle of treatment, they will take another full set of bone scans and then again at the beginning of every even-numbered cycle (fourth, sixth, eighth) to see if the spots in her lungs are shrinking. Most likely, after the insurance authorizes the medication (it costs approximately $7,000 per month for this drug), they will start the treatment next week, maybe Tuesday or Wednesday.
Today marks the 14th day after her surgery, and she was able to go to the appointment yesterday with absolutely no pain pills. Not even Tylenol! She looks great and demanded a milkshake and fries on the way home from the appointment, as she needs to put on some weight.
Just one more note, Natalee needs to avoid grapefruit juice and St. John's Wort while she's on the sunitinib. So if you were planning on making her cookies laced with St. J's Wort, you'll have to scrap those plans. I'm pretty sure she'll prefer chocolate chip anyway. ;-)
Day 22 - More Pictures
After surgery pics - look how great she looks!
with Meleah & Mackenzie
with Madeline & McKenna
candy bar poster made by her Beehive class (at church)
Janna pushing her in the hospital garden
Brittany's college roommate (Sarah, I think) & Brittany with Nat in the hospital
Day 22 - Pictures
Some pictures of Natalee just before surgery with her family
With Ryan
With Janna, Ryan, Nicole & Brittany
Everyone! Sherri, Janna, Kent, Ryan, Lindsay (Ryan's wife), Nicole, Brittany & Natalee of course
Tuesday, June 2, 2009
Day 20
No news is always good news! I have nothing to post except that there are at least 15 new pictures that will be going up on the slideshow shortly. Oh, and Sherri & Kent will meet with the oncologist tomorrow to discuss a treatment plan, so when I hear how that goes, I'll post and let you know!
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