I have to share with you all how the Lord has answered our prayers. Heidi and I have worried some about medical bills and fuel expenses for travel to Cleveland Clinic daily. Let me tell you how the Lord is providing for us! First of all, Brock had set up a "Get Well, Don Beckett" account at Home Savings Bank. Families have donated cash to this account (some people we don't even know) which has helped us meet all our obligations so far! In addition, my sister-in-law (Terri) started and email compaign with her friends and family to get us fuel gift cards for gasoline expenses. We received approx. $625 in fuel gift cards! I had estimated my fuel expenses would total about $750 for the radiation treatment process and other appointments at the Cleveland Clinic. We have also had a neighbor, a relative and a friend each give us a gift card to the grocery store!
All I can say, is put your faith in the Lord Jesus Christ and he will provide for all your needs! I have cried 3 times over these gifts, but this is all cries of happiness! Thank you all!
I have to tell you something else that is really cool! One of the Kent Firefighters lined up a trip for me and my family to take a ride on the Goodyear Blimp on April 16! How cool is that!
Tuesday, March 29, 2011
Sunday, March 27, 2011
Sunday March 27
It has definetly been a very sick week. On Thursday, I had to get some I.V. fluids because my kidneys shut down. I was not able to stand all week and stayed in bed the entire week. After 3 liters of fluid on Thursday, I was able to begin to eat some food and drink. Kidney function returned. I have had a week of the most serious gas related pain in my abdomen that I have ever had as well. I have tried everything to alleviate this discomfort. It had me double over in pain several days.
Yesterday, I made some progress and was able to attend a wedding reception and stand and sit up for 3 hours. I was not able to eat any food there but did get to visit with friends! Heidi needed this outing as well!
Today, I can sense that my white count has dropped. Don't ask me why but everytime my white count drops I have a very runny nose. I am still very week with legs like jelly but can sit up or stand as needed. I ate a decent breakfast. I looking forward to making some progress this week!
The Radiation Oncologist told me to expect to get esophgeal pain starting this week with the radiation and throughout the remainder of the treatment. He said they will treat this with Morphine as needed so that I can try to continue to eat and drink. We have 10 of my 30 treatments completed.
Yesterday, I made some progress and was able to attend a wedding reception and stand and sit up for 3 hours. I was not able to eat any food there but did get to visit with friends! Heidi needed this outing as well!
Today, I can sense that my white count has dropped. Don't ask me why but everytime my white count drops I have a very runny nose. I am still very week with legs like jelly but can sit up or stand as needed. I ate a decent breakfast. I looking forward to making some progress this week!
The Radiation Oncologist told me to expect to get esophgeal pain starting this week with the radiation and throughout the remainder of the treatment. He said they will treat this with Morphine as needed so that I can try to continue to eat and drink. We have 10 of my 30 treatments completed.
Wednesday, March 23, 2011
Wednesday March 23
I left the Cleveland Clinic as an in patient on Friday evening overloaded on fluids. During the week, they gave me 17 liters of I.V. fluids with the continous administration of Chemotherphy. I had two different I.V. lines running 24 hours per day for 96 hours. By Friday, My legs were twice there original size and my arms, face, abdomen all swollen. I was throughly exhausted from 4 nights without any sleep. Besides having a bad roomate, chemo changes at 1:30 a.m-2:30 a.m. every night, labs out of chest port at 4 am, vitals every 30 minutes, peeing every 30-60 minutes, I received no sleep. I went to radiation after discharge and we got home about 6:30 pm Friday night. I went straight to bed. I left the hospital 20 lbs heavier than when I checked in. Friday night I peed 13 lbs water off, Saturday 9 lbs water off, Sunday night 7 lbs water, and Monday another 2 lbs. I have lost 30 lbs since Friday evening. My body had a lot of trouble adjusting to this massive quick fluid loss and I was dizzy and lightheaded everytime I got up. I had to stay flat all weekend. I did eat small meals 3 times per day. I had a lot of nausea and vomiting. I have been out of "commission" up till today.
Yesterday, we had a follow up with the Oncologist. She said I was dehyrdated according to my lab work and that I was not making enough effort. I told her I could not go through this same regiment again on week 4 that she would have to change it. She refused. She said either you do this or nothing. I told her then I would do nothing. I cannot tolerate this kind of overload and then massive fluid loss. I asked her to change dosing regiment or fluid amount, she refused. At this point in time, she asked me to come back in next week on Tuesday to discuss. I have decided I will not do this same regiment again. So we may be parting ways with her on Tuesday. It seems she is more interested in filling the hospital with a patient for a week than titrating my treatment to my needs. I will discuss this with my Radiation Oncologist tomorrow at my appointment with him. I will continue the radiation at the Cleveland Clinic.
Everyday, radiation treatments have been a issue. Some days they were 1-1.5 hours behind. Some days their computers were down. Monday, a new crew could not seem to get my body lined up in the correct position and it took much longer in an a very uncomfortable position. Yesterday, the breathing machine was not working for a while and it would not let me breath. Hopefully, this will go better the rest of the week. I have 7 of my 30 radiation treatments completed so far. We go everyday Monday-Friday.
This morning, I am able to stand without dizziness. My nausea is only very mild. I have been drinking a lot of fluids and ate a good breakfast.
For all those who tried to contact me over the long weekend, I apologize for not responding to you. I was simply to sick to have visitors or talk on the phone. Hopefully, this week will get much better everyday. I am a bit depressed today that I did not get "supportive" care from my primary Oncologist. I will not accept that kind of treatment.
Yesterday, we had a follow up with the Oncologist. She said I was dehyrdated according to my lab work and that I was not making enough effort. I told her I could not go through this same regiment again on week 4 that she would have to change it. She refused. She said either you do this or nothing. I told her then I would do nothing. I cannot tolerate this kind of overload and then massive fluid loss. I asked her to change dosing regiment or fluid amount, she refused. At this point in time, she asked me to come back in next week on Tuesday to discuss. I have decided I will not do this same regiment again. So we may be parting ways with her on Tuesday. It seems she is more interested in filling the hospital with a patient for a week than titrating my treatment to my needs. I will discuss this with my Radiation Oncologist tomorrow at my appointment with him. I will continue the radiation at the Cleveland Clinic.
Everyday, radiation treatments have been a issue. Some days they were 1-1.5 hours behind. Some days their computers were down. Monday, a new crew could not seem to get my body lined up in the correct position and it took much longer in an a very uncomfortable position. Yesterday, the breathing machine was not working for a while and it would not let me breath. Hopefully, this will go better the rest of the week. I have 7 of my 30 radiation treatments completed so far. We go everyday Monday-Friday.
This morning, I am able to stand without dizziness. My nausea is only very mild. I have been drinking a lot of fluids and ate a good breakfast.
For all those who tried to contact me over the long weekend, I apologize for not responding to you. I was simply to sick to have visitors or talk on the phone. Hopefully, this week will get much better everyday. I am a bit depressed today that I did not get "supportive" care from my primary Oncologist. I will not accept that kind of treatment.
Friday, March 18, 2011
Friday March 18 - From Cleveland Clinic
Not feeling quite as good today. Nausea and limited eating. I have had 16 1000 cc's I.V. bags since Monday morning and have gained 18 lbs. since then. Mostly all water. Will take me days to get rid of all that extra water. Everything is swollen. Legs, feet, hands, face. Chemo will finish today about 2:30 pm and then I have radiation at at 3:30 pm. Should be able to leave here about 5pm. Have some periods of hiccups but not as bad as before. No sleep here, staff in every 30-60 minutes doing something. Roomate last 2 days is not very compatible either. He has a lot of pain, snores loud, leaves TV on all night.
At least I am going home tonight!!! Sleep in my bed!
At least I am going home tonight!!! Sleep in my bed!
Wednesday, March 16, 2011
March 16 - Reporting from Cleveland Clinic
Well, I have been in patient at Cleveland Clinic since Monday at 9 a.m. Firefighter Jamie Samels drive me up and spent half the day with me. Jamie showed the nurses how to start I.V.'s! haha
Monday, started a 96 hour chemo drips at 10 a.m. Started real live radiation treatments in afternoon. The radiation group was 1.5 hours behind schedule and then my appointment took 1 hour. It is quite involved. I am using a breathing machine while laying in special design bed for me to get me in same position all 33 times. The breathing machine holds my breath while being "zapped" during 25 second intervals. The hardest part is keeping my arms above my head for hour without moving them. I have 6 zapping fields that all get zapped 3 times each, so 18 zaps after being lined up.
Besides chemo, I am getting Zofran 8 mg Q 8 hours, Lovenox shots in my abdomen to prevent blood clots, Amend for nausea, Prevacid just because, lomodal for diarrhea, and just about anything you want. I even got a pepperoni pizza!
All the staff is super! The food is excellent and hot! The view stinks! I do get to see about 5 helipcopters land each night that make a lot of noise. No much sleeping at night. Staff in every 30-60 minutes to do something. Will sleep at home this weekend. Leave here Friday night after radiation.
Was sick last night after dinner. Diarrhea, cramping, nausea. stayed in bed. feel better this a.m. Ate good breakfast and took long shower (always fun with 2 iv pumps and tubing). One chemo goes in my mediport and then other in an I.V. They can't run together. suppose to get a free short massage today. Seen 3 doctors today already. Peeing like crazy with all the fluids I am getting i.v. Overall, doing pretty good now. Lost more fuzz on top of my head.
Heidi and kids doing pretty well considering all this activity. Pray for their strength. Pray that the Lord will continue his work in this world. We sure need it! Please get yourself ready for his return. Lots going on in this world today. He may return soon!
Monday, started a 96 hour chemo drips at 10 a.m. Started real live radiation treatments in afternoon. The radiation group was 1.5 hours behind schedule and then my appointment took 1 hour. It is quite involved. I am using a breathing machine while laying in special design bed for me to get me in same position all 33 times. The breathing machine holds my breath while being "zapped" during 25 second intervals. The hardest part is keeping my arms above my head for hour without moving them. I have 6 zapping fields that all get zapped 3 times each, so 18 zaps after being lined up.
Besides chemo, I am getting Zofran 8 mg Q 8 hours, Lovenox shots in my abdomen to prevent blood clots, Amend for nausea, Prevacid just because, lomodal for diarrhea, and just about anything you want. I even got a pepperoni pizza!
All the staff is super! The food is excellent and hot! The view stinks! I do get to see about 5 helipcopters land each night that make a lot of noise. No much sleeping at night. Staff in every 30-60 minutes to do something. Will sleep at home this weekend. Leave here Friday night after radiation.
Was sick last night after dinner. Diarrhea, cramping, nausea. stayed in bed. feel better this a.m. Ate good breakfast and took long shower (always fun with 2 iv pumps and tubing). One chemo goes in my mediport and then other in an I.V. They can't run together. suppose to get a free short massage today. Seen 3 doctors today already. Peeing like crazy with all the fluids I am getting i.v. Overall, doing pretty good now. Lost more fuzz on top of my head.
Heidi and kids doing pretty well considering all this activity. Pray for their strength. Pray that the Lord will continue his work in this world. We sure need it! Please get yourself ready for his return. Lots going on in this world today. He may return soon!
Friday, March 11, 2011
Friday March 11
Heidi and I spent the entire day yesterday at the Cleveland Clinic with appointments from 11:30 a.m. until 6:00 p.m. We met with a Dietician, had lab work completed, met with my Oncologist and also had a radiation trial run.
I asked the Oncologist what my chances were of a cure without surgery as an option. She stated that it is about 30% chance of a cure. That is not good, however it was actually higher than I expected. She is admitting me on Monday morning at 8 a.m. and starting the chemotherapy. I will go daily for radiation treatment at 3:30 pm. which last about 1 hour. I will leave Hospital on Friday evening after radiation. I will have the same radiation tech for the entire 7 week period. She is extremely friendly and a pleasure to be with!
Please continue to pray for Heidi's good health and strength. Continue to pray that the Lord will work through the doctors, medicine and treatment. I appreciate all of you and your continued support!
I asked the Oncologist what my chances were of a cure without surgery as an option. She stated that it is about 30% chance of a cure. That is not good, however it was actually higher than I expected. She is admitting me on Monday morning at 8 a.m. and starting the chemotherapy. I will go daily for radiation treatment at 3:30 pm. which last about 1 hour. I will leave Hospital on Friday evening after radiation. I will have the same radiation tech for the entire 7 week period. She is extremely friendly and a pleasure to be with!
Please continue to pray for Heidi's good health and strength. Continue to pray that the Lord will work through the doctors, medicine and treatment. I appreciate all of you and your continued support!
Tuesday, March 8, 2011
Tuesday March 8 - Surgeon Opinion
Some of you are waiting to hear what the surgeon told us yesterday. The news is not good.
Since we had 3 rounds of chemo and some shrinkage of the cancer, the Oncologist at the Cleveland Clinic wanted me to see their surgeon whom specializes in esophageal cancer surgery. His name is Dr. Thomas Rice. Dr. Rice reviewed my scans throughly and came into exam room where we had waited for over 2 hours for him to come to learn bad news. He told me that I do not want him or any surgeon to do surgery on my esophagus due to a "botched" surgery done on me 13 years ago. At that time I had a surgery known as a Nissen Fundiplication to stop acid reflux. It is suppose to just be a "wrap" of your upper stomach to create a new spicnter valve to keep stomach acids from coming up. Dr. Rice states the surgeon that did this procedure laproscopically, actually "flipped" my stomach into my chest where my right lung is and then sewed up hiatal hernia (diaphram) leaving my stomach in my chest instead of my abdomen. The stomach is all bunched up with lots of bends and does not allow food and stomach contents to pass through normally. This is why I have had 13 years of discomfort, gas, pain, difficulty breathing due to this big mass in my right chest. Dr. Rice states to due the the surgery he would have to remove my stomach completely, remove my esophagus and try to use my small colon as my stomach. He said most likely, he would not be able to reconstruct this and I would never swallow again. He states I would live off of tubes for feeding and such the rest of my life. He told me that the Oncologist and Radiation Oncologist have to have a better plan for me than surgery. He told me "stay away from surgeons".
I see my Oncologist on Thursday and I am scheduled to start radiation on Monday. Obviously, Heidi and I are very upset that we just had one of our treatment options eliminated due to this "botched" surgery by Dr. Yuh At Robinson.
Since we had 3 rounds of chemo and some shrinkage of the cancer, the Oncologist at the Cleveland Clinic wanted me to see their surgeon whom specializes in esophageal cancer surgery. His name is Dr. Thomas Rice. Dr. Rice reviewed my scans throughly and came into exam room where we had waited for over 2 hours for him to come to learn bad news. He told me that I do not want him or any surgeon to do surgery on my esophagus due to a "botched" surgery done on me 13 years ago. At that time I had a surgery known as a Nissen Fundiplication to stop acid reflux. It is suppose to just be a "wrap" of your upper stomach to create a new spicnter valve to keep stomach acids from coming up. Dr. Rice states the surgeon that did this procedure laproscopically, actually "flipped" my stomach into my chest where my right lung is and then sewed up hiatal hernia (diaphram) leaving my stomach in my chest instead of my abdomen. The stomach is all bunched up with lots of bends and does not allow food and stomach contents to pass through normally. This is why I have had 13 years of discomfort, gas, pain, difficulty breathing due to this big mass in my right chest. Dr. Rice states to due the the surgery he would have to remove my stomach completely, remove my esophagus and try to use my small colon as my stomach. He said most likely, he would not be able to reconstruct this and I would never swallow again. He states I would live off of tubes for feeding and such the rest of my life. He told me that the Oncologist and Radiation Oncologist have to have a better plan for me than surgery. He told me "stay away from surgeons".
I see my Oncologist on Thursday and I am scheduled to start radiation on Monday. Obviously, Heidi and I are very upset that we just had one of our treatment options eliminated due to this "botched" surgery by Dr. Yuh At Robinson.
Wednesday, March 2, 2011
Wednesday March 2
Thank goodness February is over!
Yesterday (Tuesday), Heidi, my mom and I went to the Cleveland Clinic for my EGD with Ultrasound. It went well. They used my mediport to give me sedation drugs (I was awake entire time) and first put scope down and took pictures and biospy the walls of esophagus. I have had this done before. Then they put a bigger scope down which has an ultrasound camera on it and they can look through the walls of esophagus to inside of your chest cavity. They also put a pin through the wall of esophagus and took biopsy of lymph nodes. That is pretty amazing. Never had that done before. The surgeon (Dr. Thomas Rice) will use these test to help him determine along with my scans to see if surgery is an option at this time. I see him on Monday.
They also called me yesterday and moved my radiation treatments back one week until March 14. This is to give the surgeon time to see if he can do surgery or not. The radiation group was a week ahead of everyone else, so they had to slow down and let everyone else catch up. So on March 14, I will start radiation and chemo. I will be admitted to Cleveland Clinic on March 14 for (4) nights. Radiation will last 6-7 weeks. Everyday. Chemo will be given weeks 1 and weeks 4. This is all assuming that the surgeon does not want to do surgery yet.
We had to take my mom to the Clinic so she would get bugging me. She has never been there and not a trip she can make on her own. She would not even be able to find Cleveland, let alone the Cleveland Clinic. haha
I am feeling better today, the head is closer to normal, no nausea, still have diarrhea but not as bad. I have been eating very good. Been taking short walks daily to get some exercise. That is why I need spring to get here!
Yesterday (Tuesday), Heidi, my mom and I went to the Cleveland Clinic for my EGD with Ultrasound. It went well. They used my mediport to give me sedation drugs (I was awake entire time) and first put scope down and took pictures and biospy the walls of esophagus. I have had this done before. Then they put a bigger scope down which has an ultrasound camera on it and they can look through the walls of esophagus to inside of your chest cavity. They also put a pin through the wall of esophagus and took biopsy of lymph nodes. That is pretty amazing. Never had that done before. The surgeon (Dr. Thomas Rice) will use these test to help him determine along with my scans to see if surgery is an option at this time. I see him on Monday.
They also called me yesterday and moved my radiation treatments back one week until March 14. This is to give the surgeon time to see if he can do surgery or not. The radiation group was a week ahead of everyone else, so they had to slow down and let everyone else catch up. So on March 14, I will start radiation and chemo. I will be admitted to Cleveland Clinic on March 14 for (4) nights. Radiation will last 6-7 weeks. Everyday. Chemo will be given weeks 1 and weeks 4. This is all assuming that the surgeon does not want to do surgery yet.
We had to take my mom to the Clinic so she would get bugging me. She has never been there and not a trip she can make on her own. She would not even be able to find Cleveland, let alone the Cleveland Clinic. haha
I am feeling better today, the head is closer to normal, no nausea, still have diarrhea but not as bad. I have been eating very good. Been taking short walks daily to get some exercise. That is why I need spring to get here!
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