Today I read the previous posts in this blog. It brought me so much joy. The kids read through it as well. It was so much fun watching them smile and laugh while reading.
So much has happened since I last wrote. We are still adjusting to the new normal without Rob. Bottom line: it sucks. We miss him terribly.
Thanksgiving was more difficult than I thought it would be. I am dreading Christmas, just a bit. We are going to stay in town, be with family, and enjoy one another's company.
I am starting school in January. Accounting. 15 classes and I will be done with my bachelors degree (finally). The kids are doing well in school. They are looking forward to the break.
Sunday, December 16, 2012
Tuesday, April 3, 2012
fin
If you would like to come to celebrate Rob's life, we are going to have a celebration of life on Friday (4/6) between the hours of 6:30 to 8:30 pm at our church - at the corner of 4500 S and 2700 E (the pagoda church) in Salt Lake.
Saturday (4/7) we will have a memorial service at 12 noon at the church as well. You may come to the church an hour before to visit us before the memorial service, if you so choose.
We thank you for your support. We love you. Rob is grateful for the love and support you have shown us.
Rob, you are missed. We love you.
With love,
Jacob, Gabrielle, Noah, Jessica, and of course, Robert.
xoxo
I wanted to share the obituary that will run in Thursday's paper...
Robert Edward Finlinson 1970 ~ 2012Rob passed away courageously due to lung cancer on April 3, 2012. He was born November 3, 1970 to the best parents: Elaine and Steven Finlinson. He was the 3rd of seven great kids: Doug {Elizabeth}, Gregg {Kim}, Randall, Tarali {single and available}, Richard {Sharon} and Angie {Chad Killpack}. He married the most beautiful woman in the world, Jessica Anne {Tice} Finlinson in the LDS Salt Lake Temple. Together they had the coolest four children, Jacob, Gabrielle, Kayli, and Noah. His twin brother, Randall, and his daughter, Kayli, preceded Robert in death.He lived a full life in half the time. In his short time he served as a full-time LDS missionary in the Japan, Sendai Mission. He climbed the Tetons, Mayan pyramids, and assisted in the sculpting of the angel Moroni topping the new LDS temples. He enjoyed the beauties of this earth.In lieu of flowers or plants, the family would prefer donations made to the Robert E. & Jessica A. Finlinson Family Trust Fund. Chocolate will also be accepted. Friends and enemies {he didn’t have one} may visit between the hours of 6:30 to 8:30 pm on Friday, April 6 also at 11 am on Saturday, April 7. A memorial service will be held Saturday at 12 noon, both will be held at the LDS chapel (pagoda chapel) on the corner of 4500 S & 2700 E, SLC, UT.**Rob wrote the above obituary before he died. With the diagnosis of lung cancer, he started and completed his mechanical engineering degree at the University of Utah. OttoBock Healthcare employed him for nine years, where he designed prosthetic components for amputees. He loved his work, his company, and the people with whom he associated. We are so incredibly grateful for the many years of support you gave him (you know what you have done and we have felt the difference – thank you). Words cannot express our gratitude.We are grateful for the many who have supported our family over the years, including: CNS (Barb, Camille, and Dana), Dr. Litton, Dr. Macpherson, Jessica’s work, family, friends, neighbors, and ward members.Rob was the epitome of Christ-like love and service. He was a man without guile. He looked for ways to help others, always generous with his time and talents. Robert was an amazing son, brother, dad, uncle, and friend. Jessica was so blessed to have Rob as a husband for nearly 19 years and they look forward to being with each other again. He was the best Dad! Rob was kind, patient, and a wonderful teacher to his children and many others. Though a gentle and quiet man, he had a strong voice and would often surprise and inspire us by saying something funny, clever, or wise.Rob, we already miss you, may you breathe deep and climb on. We love you.
Dear, Sweet Man
My love, my heart has died.
Over the last few days, I could see a decline in Rob. He was in distress a lot. It was difficult to breathe. He was such a trooper - he really didn't let on that he was in pain or having trouble breathing. I could tell because of the way he took his breaths. Quick breaths. Shallow breaths. Using all of his muscles, not just moving his chest up and down.
2:25 this morning, he was able to leave his cancer-ridden body and join our daughter, his twin brother, and his grandparents in heaven. He was surrounded by me, our children, his parents, sister, and my mom. We were all cheering him on letting him know that it was OK to leave us.
He is the most amazing man. Kind, loyal, sensitive, caring, happy, artistic, wonderful, funny, loving. I love him with all my heart. He will be missed incredibly.
Funeral service will be sometime this week. Still working out the logistics - waiting for Arizona, California, Texas, and Florida family members to arrive. I will update as soon as I know.
Over the last few days, I could see a decline in Rob. He was in distress a lot. It was difficult to breathe. He was such a trooper - he really didn't let on that he was in pain or having trouble breathing. I could tell because of the way he took his breaths. Quick breaths. Shallow breaths. Using all of his muscles, not just moving his chest up and down.
2:25 this morning, he was able to leave his cancer-ridden body and join our daughter, his twin brother, and his grandparents in heaven. He was surrounded by me, our children, his parents, sister, and my mom. We were all cheering him on letting him know that it was OK to leave us.
He is the most amazing man. Kind, loyal, sensitive, caring, happy, artistic, wonderful, funny, loving. I love him with all my heart. He will be missed incredibly.
Funeral service will be sometime this week. Still working out the logistics - waiting for Arizona, California, Texas, and Florida family members to arrive. I will update as soon as I know.
Friday, March 30, 2012
Oh, Say Can You Sleep?
Still not sleeping. The lack of sleep is getting old.
Still coughing. A lot. When I had pneumonia (two times), there came a point I was unable to cough. It was as if I had forgotten how. This is how my poor husband is frequently.
Yesterday, Camille, our other hospice nurse came to visit. Rob had taken off his oxygen for a few minutes before her arrival. Camille took his oxygen level...it was 75%. With his oxygen levels that low, Camille is afraid that Rob will become confused about his meds or fall. Often that is what happens when one does not get enough oxygen to one's brain. Because of his lack of oxygen, his heart has to work harder. After walking back into the room, Rob's heart rate was beating 120 beats per minute. After sitting down and having the oxygen on for about five minutes, his oxygen was up to 86% and his heartrate was down to 114 bpm.
On Monday, Rob weighed 153 (this is up from the previous week). Barb was a little concerned. She was worried that he might be retaining water. She told us that we needed to ring her immediately if his weight increased to 154. Well, yesterday, he weighed 155.6. It was decided that we would wait another day and see if he lost or gained any weight the following day. When we went to bed last night, Rob's ankles and feet were swollen. This morning when he weighed himself, he was 161. I rang Camille. She called Jane, the palliative care doc, and she prescribed a diuretic. This should help him lose that excess water.
Camille thought it prudent to make another visit today. Wearing oxygen, his oxygen level was at 77%. Clearly, he isn't getting enough.
His feet and ankles were huge when she came. His blood pressure was low yesterday and today. 108/58. Camille says that once we get the excess water out and back into his veins, his blood pressure will get higher. The new drugs should help a little with all the fluid in his lungs.
So, for now this is the plan...
If Rob's weight does not go up or down by Sunday, we call the on-call nurse and let him know.
We have graduated from two visits a week to three. Wahoo.
And last, but not least, Rob is now going to be sleeping in his very own hospital bed. It arrived today. He is especially excited about giving the kids rides on the bed. The head goes up and down as does the foot of the bed. There are even side-rails! I am quite excited about the four-inch blocks coming off our bed. I get to sleep at a 180 degree angle again!!!
Tuesday, March 27, 2012
Live Long & Prosper
What a week! Poor Rob. He is such a trooper. Can I just tell you how lame it is not to be able to breathe? In two words: it sucks.
Early Sunday morning, Rob woke up and started coughing. He couldn't stop coughing. He then couldn't breathe because he was coughing, then he couldn't catch his breath. Then he turned a lovely shade of purple. {I really do like the color; however, on a person, it is really not the best.} We did all that we were taught to do: more liquid drug, try to breathe slowly. Finally, after about 30 minutes of that, he calmed down. That was really a terrifying experience.
Rob's hospice nurse stopped by today. She took his oxygen level. It was at 78% {Rob swears it was 87%; however, he is doped up, so I hardly think that he is an expert on remembering things.} He started using oxygen whilst sleeping when he got pneumonia last month. Barb (nurse) told Rob that he needs to start wearing it all the time. If he is just sitting around not moving and decides to take a break, he may. His heart rate whilst resting is 100 bpm. When he moves from one side of the house to another (about 30 feet), it increases to about 120 bpm - this is like running up a hill for some of us. When I say that he moves, it is like a 99 year-old's steps. Slow and steady. He is EXHAUSTED all the time. Rob was wondering if this was because of the increase of his drugs. No. It is because his heart is having to work so much more than yours or mine. That is what lack of oxygen will do to you. Too bad we do not live in the age of Star Trek and they cannot run a medical tricorder over him and fix up his lungs. {We love Star Trek - in case you didn't know. Live long and prosper.}
Barb told me that I might want to think about working less and spending more time with Rob at home. My fantastic co-workers, Penny and Erin met with me today and we went over all of my job responsibilities and what they can do in my periodic absence. I spoke to my boss, Brent, and explained what was going on. He was 100% on-board with helping me do what I needed to do to support my family. I have such amazing friends that are so supportive and kind and caring.
Last summer Rob worked on some new sculptures and was able to get them fired. He was excited to get them back. When he feels better he is looking forward to finishing them.
I had the best conversation with a friend of mine. Amy stopped by my desk yesterday and said that over the weekend she thought a lot about me. I asked her why. She said it was because of the beautiful warm weather. Huh?? I wondered what that had to do with me. I asked. She said it was 'because of my stupid blog.' At this point I am trying to figure out what I wrote...
"What did I write?" I asked.
"Well, you wrote that you told Rob he cannot die until the weather is warm. The weather is warm now. You now need to tell him he cannot die until the winter because of how great you look in wool."
That was so funny! I asked her if I could share our conversation. She said yes and that she was happy it was snowing yesterday.
Warning: this is a little more information than you probably want to know...Barb ordered a commode (toilet) for Rob to keep in our room. I believe I mentioned that he has a bladder the size of a walnut. He is constantly getting up in the middle of the night either to urinate or to have a coughing attack. Because his oxygen level is so low, she really doesn't want him walking the ridiculously short distance from our bed to the bathroom. Rob has told the kids that when it is their week to clean the bathroom, they will be in charge of emptying his "bathroom." They didn't think that was funny. At all. I thought it was hilarious.
Early Sunday morning, Rob woke up and started coughing. He couldn't stop coughing. He then couldn't breathe because he was coughing, then he couldn't catch his breath. Then he turned a lovely shade of purple. {I really do like the color; however, on a person, it is really not the best.} We did all that we were taught to do: more liquid drug, try to breathe slowly. Finally, after about 30 minutes of that, he calmed down. That was really a terrifying experience.
Rob's hospice nurse stopped by today. She took his oxygen level. It was at 78% {Rob swears it was 87%; however, he is doped up, so I hardly think that he is an expert on remembering things.} He started using oxygen whilst sleeping when he got pneumonia last month. Barb (nurse) told Rob that he needs to start wearing it all the time. If he is just sitting around not moving and decides to take a break, he may. His heart rate whilst resting is 100 bpm. When he moves from one side of the house to another (about 30 feet), it increases to about 120 bpm - this is like running up a hill for some of us. When I say that he moves, it is like a 99 year-old's steps. Slow and steady. He is EXHAUSTED all the time. Rob was wondering if this was because of the increase of his drugs. No. It is because his heart is having to work so much more than yours or mine. That is what lack of oxygen will do to you. Too bad we do not live in the age of Star Trek and they cannot run a medical tricorder over him and fix up his lungs. {We love Star Trek - in case you didn't know. Live long and prosper.}
Barb told me that I might want to think about working less and spending more time with Rob at home. My fantastic co-workers, Penny and Erin met with me today and we went over all of my job responsibilities and what they can do in my periodic absence. I spoke to my boss, Brent, and explained what was going on. He was 100% on-board with helping me do what I needed to do to support my family. I have such amazing friends that are so supportive and kind and caring.
Last summer Rob worked on some new sculptures and was able to get them fired. He was excited to get them back. When he feels better he is looking forward to finishing them.
I had the best conversation with a friend of mine. Amy stopped by my desk yesterday and said that over the weekend she thought a lot about me. I asked her why. She said it was because of the beautiful warm weather. Huh?? I wondered what that had to do with me. I asked. She said it was 'because of my stupid blog.' At this point I am trying to figure out what I wrote...
"What did I write?" I asked.
"Well, you wrote that you told Rob he cannot die until the weather is warm. The weather is warm now. You now need to tell him he cannot die until the winter because of how great you look in wool."
That was so funny! I asked her if I could share our conversation. She said yes and that she was happy it was snowing yesterday.
Warning: this is a little more information than you probably want to know...Barb ordered a commode (toilet) for Rob to keep in our room. I believe I mentioned that he has a bladder the size of a walnut. He is constantly getting up in the middle of the night either to urinate or to have a coughing attack. Because his oxygen level is so low, she really doesn't want him walking the ridiculously short distance from our bed to the bathroom. Rob has told the kids that when it is their week to clean the bathroom, they will be in charge of emptying his "bathroom." They didn't think that was funny. At all. I thought it was hilarious.
Sunday, March 18, 2012
Health Update
Rob is feeling a bit better now.
A good indicator of his health is whether he does anything during the day. If he just sleeps, he is unwell. If he engages in his artwork or makes cookies: it is a good day.
Over the last few weeks he has worked on painting, chip carving, and he made cookies. Triple whammy! Wahoo.
I am glad that the Levaquin seemed to work. After completing the course of antibiotics, his breathing normalized a bit; however, it is not what it was prior to traveling to Florida. It seems to be especially bad while he is sleeping. He gets out of breath frequently. We take things slowly around our home.
His weight is steady. The only scale we own is the Wii Fit balance board. (Long story.) When he is feeling well, he does yoga (lately that has been almost daily). Before starting yoga, the program weighs him. So, long story short: Rob's weight has stayed pretty steady. This is a really good thing.
A good indicator of his health is whether he does anything during the day. If he just sleeps, he is unwell. If he engages in his artwork or makes cookies: it is a good day.
Over the last few weeks he has worked on painting, chip carving, and he made cookies. Triple whammy! Wahoo.
I am glad that the Levaquin seemed to work. After completing the course of antibiotics, his breathing normalized a bit; however, it is not what it was prior to traveling to Florida. It seems to be especially bad while he is sleeping. He gets out of breath frequently. We take things slowly around our home.
His weight is steady. The only scale we own is the Wii Fit balance board. (Long story.) When he is feeling well, he does yoga (lately that has been almost daily). Before starting yoga, the program weighs him. So, long story short: Rob's weight has stayed pretty steady. This is a really good thing.
Saturday, March 3, 2012
Florida and Distress
MORE TRAVEL: A few days after we returned from Texas, Rob said to me, "I think we should go to Florida." This meant: visit Rob's other out-of-state brother. Generally, as a rule, in the 18.5 years we have been married, if we go somewhere, ~90% of the time, it is me initiating said travel. Of course, this was a little surprising to me. I took him very seriously. (Also, I am not one to turn down traveling.)
Rob and I looked at dates we could travel without disrupting the kids' school too much. We decided to go over Spring Break in April. In the middle of January, I thought it prudent to have a conversation with Barb, Rob's hospice nurse, to find out what she thought about the dates we chose, before we locked in the dates. Barb told me that it would be better to travel sooner than later. He was feeling well enough then and you never know when things may change. Whenever a patient's medicine is changed whilst on hospice, that means things are progressing. Rob's medicine had been changed three times between December 1 and the middle of January, she thought that he might not be in a position to travel (i.e. too tired, too sick). She said that sometimes she is wrong. She loves it when she is wrong. However, she thought we should plan our trip earlier and that regardless of what happens in April, we would not have any regrets.
We decided to travel over President's Day weekend - the kids would miss two less days of school. When we told the kids that they would be taking a trip to see their cousins in Florida they were so excited! We let the kids' school teachers know and they responded favorably. Gabrielle's US History teacher called me and told me that if she keeps a daily journal of the things she does, what she liked, what she learned, and includes a few pictures that will be all she needs for his class to be caught up. Isn't that terrific? I love it when creativity is used.
We were fortunate to spend a week in February with Rich, Sharon, and their sweet children in Hollywood, Florida. It was so incredible. We went to the beach (one mile from their home) three or four times, we went canoeing in the mangroves, and visited an amazing Japanese garden. The best part was spending time with the Florida Finlinsons. The 80 degree weather was also a bonus. When we returned home it was 30 degrees. Blech.
HEALTH UPDATE: The last few nights we were there, I could hear Rob's breathing changing. He woke up several more times during the night with trouble breathing. We returned home on late Wednesday, February 22. Thursday morning he was clearly in distress. He couldn't catch his breath. His heart rate was 110 bpm resting. His oxygen levels were 85 and he had a fever. His hospice nurse came in and gave him a once-over and increased his meds. She said that if his fever got higher then we would start on an antibiotic. It was not a good day.
Friday, the 24th, he was worse. He couldn't walk five feet without being completely winded. He was panting, trying to get some air. His fever reached 102.1. I called the hospice nurse again. She arrived later that day and we had a good talk. Bottom line: more liquid drugs. No, he will not become a drug addict. When one cannot get enough air the body creates excess endorphins. Then, it is more difficult to breathe because of the anxiety created. The liquid magic helps to relax the muscles in the lungs, opens them to get air. Barb said the we need to stop trying to figure out WHAT is wrong (i.e. pneumonia) and focus on what we can DO to help him (i.e. liquid magic).
Sunday we went to church. Rob was able to stay for sacrament meeting. He was exhausted and I walked him out to the car so I could drive him home. He had to hold on to me for support. We walked at a glacial speed. It was like taking a stroll with a 90 year-old man. The best is when people say, "Wow, Rob! You look terrific!" Let me tell you. He did not look terrific. He looked awful. Why he thought he needed to go to church is beyond me; I would have stayed home.
Honestly, it was very frightening. I thought he was going to die last weekend. He looked terrible. He felt terrible. Distress is a word used by health care professionals when someone is in that state. That about sums it up: both he and I were in distress.
Thursday, March 1, was really the first day in a week that he felt a bit better. Yesterday we had a great visit with Jane, Rob's palliative care doctor. Turns out he had pneumonia. He still has it - it is lingering. He is still taking Levaquin (a heavy-duty antibiotic). He most likely picked something up in the plane to or from Florida. A plane is probably the worse place someone in an immuno compromised position could be - all that coughing, sneezing, blowing noses.
As always, we appreciate the love and support we receive from you.
xoxo
Rob and I looked at dates we could travel without disrupting the kids' school too much. We decided to go over Spring Break in April. In the middle of January, I thought it prudent to have a conversation with Barb, Rob's hospice nurse, to find out what she thought about the dates we chose, before we locked in the dates. Barb told me that it would be better to travel sooner than later. He was feeling well enough then and you never know when things may change. Whenever a patient's medicine is changed whilst on hospice, that means things are progressing. Rob's medicine had been changed three times between December 1 and the middle of January, she thought that he might not be in a position to travel (i.e. too tired, too sick). She said that sometimes she is wrong. She loves it when she is wrong. However, she thought we should plan our trip earlier and that regardless of what happens in April, we would not have any regrets.
We decided to travel over President's Day weekend - the kids would miss two less days of school. When we told the kids that they would be taking a trip to see their cousins in Florida they were so excited! We let the kids' school teachers know and they responded favorably. Gabrielle's US History teacher called me and told me that if she keeps a daily journal of the things she does, what she liked, what she learned, and includes a few pictures that will be all she needs for his class to be caught up. Isn't that terrific? I love it when creativity is used.
We were fortunate to spend a week in February with Rich, Sharon, and their sweet children in Hollywood, Florida. It was so incredible. We went to the beach (one mile from their home) three or four times, we went canoeing in the mangroves, and visited an amazing Japanese garden. The best part was spending time with the Florida Finlinsons. The 80 degree weather was also a bonus. When we returned home it was 30 degrees. Blech.
HEALTH UPDATE: The last few nights we were there, I could hear Rob's breathing changing. He woke up several more times during the night with trouble breathing. We returned home on late Wednesday, February 22. Thursday morning he was clearly in distress. He couldn't catch his breath. His heart rate was 110 bpm resting. His oxygen levels were 85 and he had a fever. His hospice nurse came in and gave him a once-over and increased his meds. She said that if his fever got higher then we would start on an antibiotic. It was not a good day.
Friday, the 24th, he was worse. He couldn't walk five feet without being completely winded. He was panting, trying to get some air. His fever reached 102.1. I called the hospice nurse again. She arrived later that day and we had a good talk. Bottom line: more liquid drugs. No, he will not become a drug addict. When one cannot get enough air the body creates excess endorphins. Then, it is more difficult to breathe because of the anxiety created. The liquid magic helps to relax the muscles in the lungs, opens them to get air. Barb said the we need to stop trying to figure out WHAT is wrong (i.e. pneumonia) and focus on what we can DO to help him (i.e. liquid magic).
Sunday we went to church. Rob was able to stay for sacrament meeting. He was exhausted and I walked him out to the car so I could drive him home. He had to hold on to me for support. We walked at a glacial speed. It was like taking a stroll with a 90 year-old man. The best is when people say, "Wow, Rob! You look terrific!" Let me tell you. He did not look terrific. He looked awful. Why he thought he needed to go to church is beyond me; I would have stayed home.
Honestly, it was very frightening. I thought he was going to die last weekend. He looked terrible. He felt terrible. Distress is a word used by health care professionals when someone is in that state. That about sums it up: both he and I were in distress.
Thursday, March 1, was really the first day in a week that he felt a bit better. Yesterday we had a great visit with Jane, Rob's palliative care doctor. Turns out he had pneumonia. He still has it - it is lingering. He is still taking Levaquin (a heavy-duty antibiotic). He most likely picked something up in the plane to or from Florida. A plane is probably the worse place someone in an immuno compromised position could be - all that coughing, sneezing, blowing noses.
As always, we appreciate the love and support we receive from you.
xoxo
Sunday, January 22, 2012
January 2012
This last month has been semi-eventful..
SCAN: Rob had his final scan (I asked special permission from our health plan). Do you recall in a previous post how I mentioned that I like numbers? The doctor who read the scan said this: "Numerous nodules are identified throughout the right upper lobe as well as the residual aspect of the right lower lung. The nodules are too numerous to count. Findings are concerning for lymphangitic tumor spread." {really?} No numbers. Rob was poked five times (in both arms) trying to find a vein (his veins seem to hide at the mere thought of being poked). Poor guy. Anyway. I was hoping to have some final numbers, but it was not to be. Bottom line: cancer growing.
CHRISTMAS: We were able to spend Christmas with Rob's sister, Angie, and her beautiful family. We packed clothing for the kids and surprised them the morning we left. It was a lot colder in Texas than we thought it would be (the humidity sure makes 40 degree weather feel A LOT colder than 40 here). Regardless of the temperature, it was a fantastic trip and many memories were made. We appreciated the hospitality of Angie and Chad and their willingness to share Christmas with us.
HEALTH UPDATE: Rob is doing well. He looks good. Because he is on steroids he has an appetite (he cannot stop eating). The food he likes to eat most is Pink Lady apples. Now, when he eats any other apple they are flavorless to him. The steroids also give him energy. One of the side effects of the steroids is that it gives him acne. Poor boy. He looks like he is 15 again. He is taking some antibiotics to help clear it up a bit. It seems to help.
Rob's pain meds have been changed again. When he started the hospice journey, he was only taking some long acting pain meds. Last week, they added some short acting pills as well. He hasn't been sleeping (and thus keeping me awake). I had been sick for three weeks with laryngitis and bronchitis. I was starting to fall apart from not sleeping. Monday last week, I called Barb and told her that Rob wasn't sleeping. I thought that he had anxiety. She came to the house and listened to Rob's lungs and talked with him. His left lung is sounding worse. After talking with Rob, Barb said that what is happening is he is not breathing as well. His brain and his lungs are not talking to each other. Subconsciously, he knows something is not right - that is why he cannot sleep. She added some pain medicine drops that work within ten minutes. These will help with him sleeping. We are almost one week out from the start of the drops. I can attest that it is helping. He sleeps now. {So do I.} It will take some time before his body adjusts to the change in the pain medicine. Right now, I have a husband that looks stoned most of the time. It is funny to see him. Last night right after the took his medicine he started talking to me. I couldn't understand him at all. It was hilarious. One of these days, I need to record him and post it here.
One thing that I have noticed is that the gurgling is picking up. It is not all the time. Sometimes, it wakes me up in the middle of the night. He is still coughing. Another medicine has been added. Rob was on an inhaler to help him breathe a little better. Camille (Rob's other hospice nurse) added a nebulizer. This is to make the albuteral get to his system a little slower and more evenly spaced.
ME & INFORMATION: As I mentioned before, I am a numbers gal. I love information. The more information I have, the better I cope. Through all this, I have asked Greg (oncologist) and Jane (palliative care) many questions. I expect straight-forward answers. In talking with them, they have explained that many patients (and their family members) ask for the same frankness; however, when it comes down to it they really do not want the frank answers. This whole cancer bit has become second hand to me now. We just marked our 6.5 year mark. I know how I operate. I have educated our hospice nurses to let them know my modus operandi.
Because I am at work, I am not at home to be a part of the hospice nurse visits. For the last 6.5 years, I have attended all of Rob's doctor's visits. As I already mentioned, I fare much better with more information. Wednesday, Rob showed me a chart he made. It helps him organize the 8+ medicines he needs to take. I noticed that they had added the short-acting pain medicine. I didn't even know that they added that a week ago. Wow. I feel like I have no control of this situation (I have never deluded myself into thinking that I did have control). At least in going to the doctor's appointments with Rob and asking questions, I knew that I had some semblance of control (at least in my mind). I suppose in a way, asking questions and getting answers dictates some sort of control: I am controlling the amount of information I am receiving.
Long story short: I am going to have Rob call me when Barb or Camille (Rob's other hospice nurse) come to the house. He can put the call on speaker and then I can 'be a part' of the appointment. I think this will help with me feeling helpless.
Incidentally, I have already told Rob under no circumstances is he to die in the winter. I refuse to wear a skirt and freeze off my heiny standing in the cold. He told me that he would do what he could. Hahaha.
KIDS: Our kids are doing well. We have a hospice volunteer coming to the house helping the kids to talk about 'feelings.' At this point, they are annoyed and don't like it. I think that at some point it really will help them. They are such good kids. They are amazing. Throughout all of this, they are still exceptional students. They seem happy. (We have told them that their school work is not to lapse - this whole cancer business is not an excuse to earn sub-standard grades.)
I think that I will be posting a little more frequently from this point forward.
Again, we are grateful for the love and support we constantly receive from family, friends, and even strangers. We are grateful for the miracle of the last 6.5 years. Our kids know their dad. We have created many memories. Life is good. God is good.
SCAN: Rob had his final scan (I asked special permission from our health plan). Do you recall in a previous post how I mentioned that I like numbers? The doctor who read the scan said this: "Numerous nodules are identified throughout the right upper lobe as well as the residual aspect of the right lower lung. The nodules are too numerous to count. Findings are concerning for lymphangitic tumor spread." {really?} No numbers. Rob was poked five times (in both arms) trying to find a vein (his veins seem to hide at the mere thought of being poked). Poor guy. Anyway. I was hoping to have some final numbers, but it was not to be. Bottom line: cancer growing.
CHRISTMAS: We were able to spend Christmas with Rob's sister, Angie, and her beautiful family. We packed clothing for the kids and surprised them the morning we left. It was a lot colder in Texas than we thought it would be (the humidity sure makes 40 degree weather feel A LOT colder than 40 here). Regardless of the temperature, it was a fantastic trip and many memories were made. We appreciated the hospitality of Angie and Chad and their willingness to share Christmas with us.
HEALTH UPDATE: Rob is doing well. He looks good. Because he is on steroids he has an appetite (he cannot stop eating). The food he likes to eat most is Pink Lady apples. Now, when he eats any other apple they are flavorless to him. The steroids also give him energy. One of the side effects of the steroids is that it gives him acne. Poor boy. He looks like he is 15 again. He is taking some antibiotics to help clear it up a bit. It seems to help.
Rob's pain meds have been changed again. When he started the hospice journey, he was only taking some long acting pain meds. Last week, they added some short acting pills as well. He hasn't been sleeping (and thus keeping me awake). I had been sick for three weeks with laryngitis and bronchitis. I was starting to fall apart from not sleeping. Monday last week, I called Barb and told her that Rob wasn't sleeping. I thought that he had anxiety. She came to the house and listened to Rob's lungs and talked with him. His left lung is sounding worse. After talking with Rob, Barb said that what is happening is he is not breathing as well. His brain and his lungs are not talking to each other. Subconsciously, he knows something is not right - that is why he cannot sleep. She added some pain medicine drops that work within ten minutes. These will help with him sleeping. We are almost one week out from the start of the drops. I can attest that it is helping. He sleeps now. {So do I.} It will take some time before his body adjusts to the change in the pain medicine. Right now, I have a husband that looks stoned most of the time. It is funny to see him. Last night right after the took his medicine he started talking to me. I couldn't understand him at all. It was hilarious. One of these days, I need to record him and post it here.
One thing that I have noticed is that the gurgling is picking up. It is not all the time. Sometimes, it wakes me up in the middle of the night. He is still coughing. Another medicine has been added. Rob was on an inhaler to help him breathe a little better. Camille (Rob's other hospice nurse) added a nebulizer. This is to make the albuteral get to his system a little slower and more evenly spaced.
ME & INFORMATION: As I mentioned before, I am a numbers gal. I love information. The more information I have, the better I cope. Through all this, I have asked Greg (oncologist) and Jane (palliative care) many questions. I expect straight-forward answers. In talking with them, they have explained that many patients (and their family members) ask for the same frankness; however, when it comes down to it they really do not want the frank answers. This whole cancer bit has become second hand to me now. We just marked our 6.5 year mark. I know how I operate. I have educated our hospice nurses to let them know my modus operandi.
Because I am at work, I am not at home to be a part of the hospice nurse visits. For the last 6.5 years, I have attended all of Rob's doctor's visits. As I already mentioned, I fare much better with more information. Wednesday, Rob showed me a chart he made. It helps him organize the 8+ medicines he needs to take. I noticed that they had added the short-acting pain medicine. I didn't even know that they added that a week ago. Wow. I feel like I have no control of this situation (I have never deluded myself into thinking that I did have control). At least in going to the doctor's appointments with Rob and asking questions, I knew that I had some semblance of control (at least in my mind). I suppose in a way, asking questions and getting answers dictates some sort of control: I am controlling the amount of information I am receiving.
Long story short: I am going to have Rob call me when Barb or Camille (Rob's other hospice nurse) come to the house. He can put the call on speaker and then I can 'be a part' of the appointment. I think this will help with me feeling helpless.
Incidentally, I have already told Rob under no circumstances is he to die in the winter. I refuse to wear a skirt and freeze off my heiny standing in the cold. He told me that he would do what he could. Hahaha.
KIDS: Our kids are doing well. We have a hospice volunteer coming to the house helping the kids to talk about 'feelings.' At this point, they are annoyed and don't like it. I think that at some point it really will help them. They are such good kids. They are amazing. Throughout all of this, they are still exceptional students. They seem happy. (We have told them that their school work is not to lapse - this whole cancer business is not an excuse to earn sub-standard grades.)
I think that I will be posting a little more frequently from this point forward.
Again, we are grateful for the love and support we constantly receive from family, friends, and even strangers. We are grateful for the miracle of the last 6.5 years. Our kids know their dad. We have created many memories. Life is good. God is good.
Wednesday, December 7, 2011
The Mother of all Updates
As you have ascertained, I have not updated this blog in SIX MONTHS! Yes, I know. There are reasons, none of which I will get into right now. Suffice it to say, it has been a bumpy road the last six months.
Thursday, December 1, after meeting with Jane (our palliative care doctor) we decided to be proactive in Rob’s care. We have started hospice. Before I go on, I would like to provide some education about hospice. The following definition of palliative care & hospice from NQF (National Quality Forum):
Chemotherapy has been awful. It seemed that the longer Rob was having chemo, the worse he felt. In August, we drove to California to visit my dad. Rob was supposed to get a chemo treatment the day before we left; however, after a conversation with his oncologist, we decided to wait until we arrived home. This was a nice five-week break (generally there are three weeks between treatments).
August: When we returned from California, we had a treatment. Soon after, Rob’s dizziness and nausea increased. Bruce, the nurse practitioner, had Rob walk down the hall like he was walking a tightrope. Needless to say, he failed miserably. {It was quite humorous to watch, actually.} Because he was having nausea with the dizziness, a brain MRI was scheduled. Bruce was worried about the cancer metastasizing to his brain.
It hadn’t. Phew. Another bullet dodged?
September: We ended up calling Intermountain Healthcare’s Balance Center. We found that (in addition to nasty chemo side effects) Rob has BPPV (Benign Paroxysmal Positional Vertigo) – otherwise known as ear crystals. This is why he had been walking around like a drunken sailor.
We had a CT scan at the end of September. It was hilarious. The radiologist wrote the report with minimal information regarding the growth of the tumors. {Wouldn’t you think that if the diagnosis was cancer one would give detailed information about the growth, rather than “slight progression of metastatic disease” as the best detail? Come on! We make treatment decisions based on these reports!} Anyway, I digress.
We went into the appointment with no better understanding of what the last scan showed than before we had the scan. Bruce was just as confused as we were. Hahah! So glad that it wasn’t just us that felt like the report was lacking. He sent a request to the radiologist to get detailed measurements. We went ahead and had chemo, because we weren’t sure about the scan report.
October: One week later we received a call from Bruce with the addendum report: there are several more tumors, most are growing, the largest tumor nearly tripled (now 9 cm x 4.5 cm) and the second largest nearly doubled (now 7 cm x 3.6 cm). Minimal changes? Really? Well, with that bit of information we decided to cease the chemotherapy treatment. Nine months of chemo was enough.
Another bit of fun information is that the scan showed that Rob had a kidney stone. Apparently, if one is drugged up enough, one doesn't feel a kidney stone. His brother and sister both had one this year and they were in so much pain. Rob said that they were wimps. He had an ultrasound two weeks later and apparently he passed the stone (again with no pain). Wow. He is Superman!
Mid-October: We spoke with the oncology doctor about other chemotherapy treatments. With one of the treatments, he would have nausea, hair loss (which screams cancer patient), fatigue, and joint & muscle pain. The other treatment would be all the side effects as in the first option, with the exception of hair loss. Since the chemo drugs he just finished made him sick, he would definitely become sick with the other treatments. The chance of the chemo working is cut in half and it we could expect that it would work half as long as before. Since the last drug lasted roughly nine months, then the new would work roughly four and one half months. As Dr. Litton was telling us all this he said that he was talking himself out of the chemo treatments as well. {Honestly, we had, had enough. The thought of treatment made Rob sick – and still does.}
November: Rob enjoyed thoroughly NOT having chemo treatments. We had family pictures done on his birthday.
December: We are supposed to just watch for the cancer side effects now. Increased fatigue, short of breath, losing weight.
Speaking of losing weight…Rob has lost 26 pounds since January. Most of that weight loss started in the middle of August. He weighs less than when we were married 18 years ago. Interestingly enough, did you know that cancer puts out hormones that make it impossible for your body to absorb calories? One could eat 4000 calories in a day and still lose weight. That is why people with cancer lose weight. I always thought that the calories were going to the cancer cells. Huh. See Rob's weight loss line chart below:
Thursday, December 1, after meeting with Jane (our palliative care doctor) we decided to be proactive in Rob’s care. We have started hospice. Before I go on, I would like to provide some education about hospice. The following definition of palliative care & hospice from NQF (National Quality Forum):
Palliative care refers to patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.
Hospice care is a service delivery system that provides palliative care for patients who have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition. It also supports family members coping with the complex consequences of illness, disability, and aging as death nears. Hospice care further addresses the bereavement needs of the family following the death of the patient.
Of particular importance, palliative care services are indicated across the entire trajectory of a patient’s illness and its provision should not be restricted to the end-of-life phase.
There have been studies that prove that when one is involved with hospice, they live longer and have a better quality of life versus receiving treatment until the bitter end. We are "choosing hospice to live, not to die" (the words of Jane). If you are interested in learning a little more about hospice and why someone would choose hospice, here is an article written by Atul Gawande, MD, titled “Letting Go.” This is not a short article (about 25 pages); however, it is well written and gives examples about hospice versus treatment. I would recommend this for anyone interesting in finding out more about hospice.
This is what I have learned so far with our interviews with the hospice people: Hospice consists of an interdisciplinary team. This group of people provide treatment at the patient’s house. The disciplines are: a nurse (for physical needs), a chaplain (for spiritual needs), and a social worker (for emotional needs). Additionally, volunteers come to the home to help out with respite care (for me), run errands (if needed), and help clean (wahoo!). So far, the folks at CNS are amazing. They are a well-oiled machine. Monday morning I received three phone calls to make appointments for the various professionals to come to our home for the initial assessments.
As time progresses, I hope to provide better communication in a more timely manner. I have been a bit overwhelmed the last six months. {Does anyone even read this anymore?}
Present day: As far as how Rob is feeling: his fatigue is picking up a bit. He still has energy; however, I can see it slowly evaporating from him like rain hitting the pavement on a hot summer day. He is coughing more. We both noticed it last week and it seems to be progressively getting worse. Soon, he will sound like a smoker. Haha. The thing I love most is when he is sleeping next to me and I hear him breathing. Sometimes, it is rattle-y. Well, at least he is breathing. His pain is well managed right now. {I need to mention that he is not dying right now. Rob is concerned that I am making it sound like he is withering away. He is much better than he was this time last year (remember the oxygen?); however, I watch him like a hawk and I see that he is a little more fatigued than last month. It is only a flesh wound.}
As you may have already figured out, Rob isn't working anymore. He is enjoying his 'early retirement'. He spends his time painting, drawing, reading, walking, doing yoga, taking the kids to school, cooking dinner {wow. I have a housewife!}, working at transferring our home videos to DVDs, and updating his personal history.
Before I sign off, I would be remiss if I did not mention a few notes of gratitude.
The folks at Otto Bock Healthcare (Rob’s employer) have been completely AMAZING. You know what you have done. I cannot even begin to relay the gratitude Rob and I feel for you and what a blessing you have been in our lives. We appreciate all the love and support you have given him and our family over the last (almost) ten years (6.5 of that has been life-with-cancer). It is unheard of these days for an employer to stick by an employee to the degree you have. We are eternally grateful.
Everyone at Utah Cancer Specialists – our entire cancer experience has been so positive. We appreciate the fantastic care you have given Rob. It has been such a pleasure seeing you every three weeks for so long!
Thank you to our families – for standing by, helping, loving, and supporting us. We know that you will continue to do so. We are so blessed to have such amazing families.
Thanks to our ward family for the words of support and encouragement. We appreciate you asking after Rob and commenting how much you enjoy seeing him at church. Yes, he does look fantastic (he is like a college boy again - he is 13 pounds heavier than Jacob and can wear Jake's pants now - from a size 34 waist to a 29).
Thanks to my work family. Working full-time would be awful if it weren’t for you. I am so blessed to have such good friends. Thank you for your support.
Thank you, my Arbonne family. You are so supportive and kind. I appreciate you.
We would like to thank God for the peace, love, and support we feel from Him. Without Him, I cannot imagine how much more difficult this journey would have been.
More updates to come!
With much love and gratitude,
Jessica
Monday, July 4, 2011
Update...
Rob just had a scan: no change from the previous in April. That is fabulous. Wahoo!
This scan was a little different than all others he has received. It was an angio CT. He had been having some pains in his lungs (different and more than usual) and some swelling in his legs. His palliative doc thought that he might be having a pulmonary embolism (blood clot in his lungs). She wanted to make sure that, that wasn't the case.
All clear on the clot front. Another bullet dodged?
He is still continuing with chemo every three weeks. He gets poisoned next week, in fact. When people see Rob, they say, "Wow, he looks great! He looks normal." He really does. He has lost ten pounds in just under two months. He doesn't eat near as much. In fact, looking at his plate yesterday and mine, I was really embarrassed how much food was on mine. I felt like Miss Piggy in all her glory. Oink...
People who have not experienced chemo first-hand, think of chemo like what is seen in the movies. Since real-life is not always like the movie, I thought I would share what this particular chemo does to Rob. The name of the drug is called Alimta.
This scan was a little different than all others he has received. It was an angio CT. He had been having some pains in his lungs (different and more than usual) and some swelling in his legs. His palliative doc thought that he might be having a pulmonary embolism (blood clot in his lungs). She wanted to make sure that, that wasn't the case.
All clear on the clot front. Another bullet dodged?
He is still continuing with chemo every three weeks. He gets poisoned next week, in fact. When people see Rob, they say, "Wow, he looks great! He looks normal." He really does. He has lost ten pounds in just under two months. He doesn't eat near as much. In fact, looking at his plate yesterday and mine, I was really embarrassed how much food was on mine. I felt like Miss Piggy in all her glory. Oink...
People who have not experienced chemo first-hand, think of chemo like what is seen in the movies. Since real-life is not always like the movie, I thought I would share what this particular chemo does to Rob. The name of the drug is called Alimta.
- It does not make his hair fall out. I think that people are surprised that he is having chemo, since he still has hair.
- He mostly feels crummy for one week after. Someone asked me how quickly he can feel the effects of the chemo. The whole process takes about 1.5 hours. When we are driving home, he is feeling it.
- The day of chemo his face turns a funky yellowish-greenish color.
- The day after chemo, his face turns bright red and swells a little; think dodge ball. It is like he is burnt - he actually has a bunch of freckles from this chemo - it is called hyperpigmentation. His appetite is somewhat there. He eats, but not much (hence the weight loss).
- After the first week, he starts to feel a little better. Tired still, but not as the first week. A little nausea, but nothing that a bunch of pills won't help.
- He is exhausted, but cannot sleep. Too much on his brain? Not sure...
- The week right before, he starts to feel a little sick again. Nausea sets in again and he is very tired.
- He can function and do the things he needs to. He can help me around the house, play with the kids, drive himself to work for a few hours a day a couple days a week (not the chemo week, though). He just has to pace himself. He will take a nap for a few minutes or several hours, depending on how much he has done that day or week. He is not sitting in his cancer chair all day long.
I have tried to take a picture of him during the 'face of many colors' but he is pretty adamant that I don't. I guess he doesn't want that chronicled. Hmmm. Next week, we meet with Dr. Litton's PA, the palliative care doc, and get chemo. Cannot wait!
Friday, April 8, 2011
Hallelujah!!!
Wahoo! Rob had a scan on Monday. We saw the doctor yesterday.
I suppose this wacky chemo has been doing something! (Well, we knew it was because Rob is not on oxygen and he can breathe and he doesn't look like he is on Death's door anymore.) I guess, feeling nauseated 90% of the time and wanting to sleep all the time is worth a little poison.
Dr. Litton came in to the exam room smiling. He said that it is really nice delivering good news. (I guess in the cancer field, good news is a rare commodity. Imagine that?) Dr. Litton gave us these pictures of these scans he printed. (I thought that was very nice of him. Now, we have our very own show-and-tell!)
Take a look at the scan on top. (Jacob said that his lungs look like a steak.) Take a look at the "steak" on the top right. All the white splotches in the black area is cancer. The image on the top was taken in January. Do you remember January? We thought he was going to die that month. It was indeed a bleak month in so many ways!
OK. Now, take a look at the "steak" at the bottom right. The white stuff is smaller, not as pronounced. You can see the cancer on the left side of the picture has decreased a little as well.
Rob's brother, Gregg, had a great question: If the cancer is smaller, what happens to the space where it once occupied?
The answer: The cancer was growing into the aveoli (lung's air sacs), now instead of containing cancer, it is filled with air. This means that more air is getting into his lungs: he is breathing better.
We have a plan after viewing the scan and report:
Thanks, Sarah & Nate, for your understanding! Thanks to the rest of the awesome Engineering team at Otto Bock for picking up the pieces and helping with Rob's projects while he has been 'away.' Rob appreciates all of you and the support you have given him! He is hopeful that he will gain a little more energy with this new regime (we will find out in the next few weeks...he has chemo next Thursday). He is looking forward to seeing everyone again!
I love and appreciate that we have people coming out of the woodwork to give notes of encouragement and love, phone calls, and so many other gifts. Thank you so much. It sure makes this awesome roller coaster much more enjoyable (is that the right word??).
We love you!
I suppose this wacky chemo has been doing something! (Well, we knew it was because Rob is not on oxygen and he can breathe and he doesn't look like he is on Death's door anymore.) I guess, feeling nauseated 90% of the time and wanting to sleep all the time is worth a little poison.
Dr. Litton came in to the exam room smiling. He said that it is really nice delivering good news. (I guess in the cancer field, good news is a rare commodity. Imagine that?) Dr. Litton gave us these pictures of these scans he printed. (I thought that was very nice of him. Now, we have our very own show-and-tell!)
Take a look at the scan on top. (Jacob said that his lungs look like a steak.) Take a look at the "steak" on the top right. All the white splotches in the black area is cancer. The image on the top was taken in January. Do you remember January? We thought he was going to die that month. It was indeed a bleak month in so many ways!
OK. Now, take a look at the "steak" at the bottom right. The white stuff is smaller, not as pronounced. You can see the cancer on the left side of the picture has decreased a little as well.
Rob's brother, Gregg, had a great question: If the cancer is smaller, what happens to the space where it once occupied?
The answer: The cancer was growing into the aveoli (lung's air sacs), now instead of containing cancer, it is filled with air. This means that more air is getting into his lungs: he is breathing better.
We have a plan after viewing the scan and report:
- Go in for the chemo drug Alimta every three weeks (rather than doing the Carboplatin & Alimta as we thought before).
- He will not need to go in for nader visits 10 days after chemo (this is where they take a look at his blood levels to make sure that he is not too sick and can continue with chemo).
- His side effects are not supposed to be as severe as they have been with only the Alimta.
- He will continue with the Alimta until it no longer shows its effectiveness.
- He will continue to have CTs every three months.
Thanks, Sarah & Nate, for your understanding! Thanks to the rest of the awesome Engineering team at Otto Bock for picking up the pieces and helping with Rob's projects while he has been 'away.' Rob appreciates all of you and the support you have given him! He is hopeful that he will gain a little more energy with this new regime (we will find out in the next few weeks...he has chemo next Thursday). He is looking forward to seeing everyone again!
I love and appreciate that we have people coming out of the woodwork to give notes of encouragement and love, phone calls, and so many other gifts. Thank you so much. It sure makes this awesome roller coaster much more enjoyable (is that the right word??).
We love you!
Saturday, March 26, 2011
Round Four
Again. I am so resistant to updating. I figure if I don't post an update, then we are all cancer free. [does that work?]
I will start from last week's doctor appointment with Rob's palliative care doc (Jane McPherson)...
3/16/2011 ~ Doctor Visit
Rob gained two pounds. His oxygen and everything else is normal. Blood levels are a little low, but within chemo parameters. Wahoo! His pain levels are much better (thanks to the doc's tweaking of his meds).
We talked to her about how much better he is breathing and how he seems to be coughing less than before. We wondered whether there was a connection between the chemo and his feeling better.
Jane told us that tumors trap infection and this constricts the airway. Chemo often times helps shrink the tumors which in turn reduces the inflammation and makes the oxygen work better in the lungs. (Phew!) Does this make sense?
Rob is still feeling a bit of pain from the chemo site from six weeks ago. Apparently, the chemo is a poison (really?) and it is causing some irritation in his veins. We talked about a PICT line and a PORT, but decided that to help combat this pain and to make it so it is better in the future, his nurses will dilute the chemo solution a bit more and he will need to apply moist heat on the site. It is less invasive this way and where we don't know how much more chemo he will be having, it doesn't make sense to hook him up and make him a Borg at this stage.
One thing we did - that everyone should think about doing - is we filled out a form called a "Pulse Form." This is a document that one carries with them at all times (glove box, wallet, at home, etc.). It tells any emergency worker/caregiver/hospital/etc. what one's wishes are in the event of a car crash, etc. It was a fantastic conversation to have with Rob and Jane. There were interesting questions: some that I wouldn't have thought to ask.
3/24/2011 ~ Chemo Day
Rob lost two pounds. (Are we seeing some sort of trend yet?) Blood levels were OK enough to get the chemo.
Chemo went well. It was long. The last few days have been good. Fatigue. Nausea. Hiccups. Nothing new.
xoxox
I will start from last week's doctor appointment with Rob's palliative care doc (Jane McPherson)...
3/16/2011 ~ Doctor Visit
Rob gained two pounds. His oxygen and everything else is normal. Blood levels are a little low, but within chemo parameters. Wahoo! His pain levels are much better (thanks to the doc's tweaking of his meds).
We talked to her about how much better he is breathing and how he seems to be coughing less than before. We wondered whether there was a connection between the chemo and his feeling better.
Jane told us that tumors trap infection and this constricts the airway. Chemo often times helps shrink the tumors which in turn reduces the inflammation and makes the oxygen work better in the lungs. (Phew!) Does this make sense?
Rob is still feeling a bit of pain from the chemo site from six weeks ago. Apparently, the chemo is a poison (really?) and it is causing some irritation in his veins. We talked about a PICT line and a PORT, but decided that to help combat this pain and to make it so it is better in the future, his nurses will dilute the chemo solution a bit more and he will need to apply moist heat on the site. It is less invasive this way and where we don't know how much more chemo he will be having, it doesn't make sense to hook him up and make him a Borg at this stage.
One thing we did - that everyone should think about doing - is we filled out a form called a "Pulse Form." This is a document that one carries with them at all times (glove box, wallet, at home, etc.). It tells any emergency worker/caregiver/hospital/etc. what one's wishes are in the event of a car crash, etc. It was a fantastic conversation to have with Rob and Jane. There were interesting questions: some that I wouldn't have thought to ask.
3/24/2011 ~ Chemo Day
Rob lost two pounds. (Are we seeing some sort of trend yet?) Blood levels were OK enough to get the chemo.
Chemo went well. It was long. The last few days have been good. Fatigue. Nausea. Hiccups. Nothing new.
xoxox
Friday, March 4, 2011
Round Three
I checked out for a little while. I think that I needed a non-cancer break. Forgive my lack-of-information...
It is interesting: the last few weeks have actually been good. Rob has been able to go to work for a few hours each day. He is completely exhausted when he gets back home, but he feels more like a human being than he has in a long while.
Yesterday was chemo day. It is funny how that works. One starts to feel a bit better and then it is chemo time again and it knocks one down on one's rear. We started the chemo prior to the appointment with the doctor as he was running two hours behind. (Thank goodness we had the chemo set up, right?) He is never that late - a fluke.
At any rate, it was a good appointment day. We talked with his doctor about what is next. We decided since Rob looks so much better than he did in December/January that the chemo must be doing something. He isn't coughing like he was, he is on oxygen only whilst sleeping, and his pain is being managed much better (thanks to Dr. Macpherson).
We have opted for one more round of chemotherapy and then we will have the scan a little over a week after that. Originally, we only agreed to three rounds of chemo. However, as far as we can tell (without a scan), it seems to be helping a bit, so it seemed prudent to get one more round in. Additionally, all of his scans have been three months apart. They also have generally shown an increase of 60%. If we were to get a scan after two months, it would be difficult to compare with older scans. Based on his clinical improvement (and the scan results), he can continue for one or two more rounds of his current drugs. If he shows response (meaning: growing as fast as it has) after that the additional rounds of chemo, then we would get rid of the carboplatin drug and keep on the alimpta drug as a type of maintenance.
Next chemotherapy: three weeks
Next scan: first week of April
Again, we are so grateful for the love and support we have received from so many countless people.
It is interesting: the last few weeks have actually been good. Rob has been able to go to work for a few hours each day. He is completely exhausted when he gets back home, but he feels more like a human being than he has in a long while.
Yesterday was chemo day. It is funny how that works. One starts to feel a bit better and then it is chemo time again and it knocks one down on one's rear. We started the chemo prior to the appointment with the doctor as he was running two hours behind. (Thank goodness we had the chemo set up, right?) He is never that late - a fluke.
At any rate, it was a good appointment day. We talked with his doctor about what is next. We decided since Rob looks so much better than he did in December/January that the chemo must be doing something. He isn't coughing like he was, he is on oxygen only whilst sleeping, and his pain is being managed much better (thanks to Dr. Macpherson).
We have opted for one more round of chemotherapy and then we will have the scan a little over a week after that. Originally, we only agreed to three rounds of chemo. However, as far as we can tell (without a scan), it seems to be helping a bit, so it seemed prudent to get one more round in. Additionally, all of his scans have been three months apart. They also have generally shown an increase of 60%. If we were to get a scan after two months, it would be difficult to compare with older scans. Based on his clinical improvement (and the scan results), he can continue for one or two more rounds of his current drugs. If he shows response (meaning: growing as fast as it has) after that the additional rounds of chemo, then we would get rid of the carboplatin drug and keep on the alimpta drug as a type of maintenance.
Next chemotherapy: three weeks
Next scan: first week of April
Again, we are so grateful for the love and support we have received from so many countless people.
Saturday, February 12, 2011
Chemo Shmeemo
Thursday was a big day. We met with Rob's oncologist, a palliative care physician, and had chemo.
Rob's oxygen saturation levels were extraordinary! 97% on two liters of oxygen. Wahoo....!!!
He has lost another pound since February 3. Not alarming, but he is down seven pounds since December.
We told his oncologist how awful his first chemo week was, what with all the puking, feeling like puking, and sleeping. His oncologist told us that he was going to add an IV drug called Amend prior to the chemo to help with the nausea. He also added a few more prescription drugs to help with the post-chemo nausea.
We started the chemo and whilst waiting for the blood work to come back, Rob and I decided to run an experiment. He took off his oxygen and then we retested his levels after 25 minutes. His levels were at 93%. So, after talking to the nurse, we decided to only use his oxygen when he is exercising or sleeping. He is so happy about that. I am still waiting for the pulse oximeter I ordered forever ago to arrive to double check and make sure he is getting enough.
The palliative doctor was fantastic. She went over all Rob's medicine and told us how he should better utilize the medicine he is taking. Up until this point, he was taking so many at random times for this or for that.
Last chemo go-round he was soooooooo sick the day after. This time around he has been really good. There is some nausea and fatigue, but not near as bad as it was last time. Funny thing, though. He has the worst hiccups. (If you remember, which you probably don't, last treatment in 2005, he had terrible hiccups and required a prescription drug to take care of it - it didn't help the fact that he was still healing from his lung surgery.) We are trying a few different things right now: Maalox Advanced, GasX (I know, right? Who would have thought?), and a prescription drug for his nausea that may help with the hiccups. We will see.
We took a small walk today. It was nice to get him outside, but he was exhausted when we were done. (It was uphill, to his credit.)
Thank you for all the kind words, thoughts, and deeds on our behalf! We are very, very grateful.
Rob's oxygen saturation levels were extraordinary! 97% on two liters of oxygen. Wahoo....!!!
He has lost another pound since February 3. Not alarming, but he is down seven pounds since December.
We told his oncologist how awful his first chemo week was, what with all the puking, feeling like puking, and sleeping. His oncologist told us that he was going to add an IV drug called Amend prior to the chemo to help with the nausea. He also added a few more prescription drugs to help with the post-chemo nausea.
We started the chemo and whilst waiting for the blood work to come back, Rob and I decided to run an experiment. He took off his oxygen and then we retested his levels after 25 minutes. His levels were at 93%. So, after talking to the nurse, we decided to only use his oxygen when he is exercising or sleeping. He is so happy about that. I am still waiting for the pulse oximeter I ordered forever ago to arrive to double check and make sure he is getting enough.
The palliative doctor was fantastic. She went over all Rob's medicine and told us how he should better utilize the medicine he is taking. Up until this point, he was taking so many at random times for this or for that.
Last chemo go-round he was soooooooo sick the day after. This time around he has been really good. There is some nausea and fatigue, but not near as bad as it was last time. Funny thing, though. He has the worst hiccups. (If you remember, which you probably don't, last treatment in 2005, he had terrible hiccups and required a prescription drug to take care of it - it didn't help the fact that he was still healing from his lung surgery.) We are trying a few different things right now: Maalox Advanced, GasX (I know, right? Who would have thought?), and a prescription drug for his nausea that may help with the hiccups. We will see.
We took a small walk today. It was nice to get him outside, but he was exhausted when we were done. (It was uphill, to his credit.)
Thank you for all the kind words, thoughts, and deeds on our behalf! We are very, very grateful.
Thursday, February 3, 2011
Eat, Drink, & Be Merry
Ahhh. The last few days (compared to the two weeks prior) have been good. Rob has eaten almost like normal. Wahoo! He is still tired, but really, the last few days have been good. He was even making jokes. This is a huge thing, since last week, I think that he would have just assumed crawling into a six-foot hole. His nausea is just about gone (thus the eating).
We visited his oncology office to get some blood work done. His levels are pretty low (duh - he just had chemo), but not alarmingly so. He is highly susceptible to catching any kind of illness, so we try to keep people at bay. If someone comes to our home, we spray them down with sanitizer.
His oxygen levels were FANTASTIC! They were 98% on four liters of oxygen. They lowered it to two and tested him ten minutes later. It was 96%. They decided that we could leave it at two. I purchased a pulse oximeter so we could test his blood oxygen levels at home. No more guessing - or assuming that he is getting enough (or not) oxygen.
He is on day nine after his last dose of Levaquin (antibiotic). He is already noticing a difference how he feels; he is coughing more and he has more pain. Thank goodness for drugs to help ease the pain. Hopefully, this vicious cycle of pneumonia on and off again will end.
One week from today, he will have another round of chemotherapy. We are looking forward (with much trepidation) to the days following. We are preparing for much vomit and sleeping (hopefully not at the same time).
We visited his oncology office to get some blood work done. His levels are pretty low (duh - he just had chemo), but not alarmingly so. He is highly susceptible to catching any kind of illness, so we try to keep people at bay. If someone comes to our home, we spray them down with sanitizer.
His oxygen levels were FANTASTIC! They were 98% on four liters of oxygen. They lowered it to two and tested him ten minutes later. It was 96%. They decided that we could leave it at two. I purchased a pulse oximeter so we could test his blood oxygen levels at home. No more guessing - or assuming that he is getting enough (or not) oxygen.
He is on day nine after his last dose of Levaquin (antibiotic). He is already noticing a difference how he feels; he is coughing more and he has more pain. Thank goodness for drugs to help ease the pain. Hopefully, this vicious cycle of pneumonia on and off again will end.
One week from today, he will have another round of chemotherapy. We are looking forward (with much trepidation) to the days following. We are preparing for much vomit and sleeping (hopefully not at the same time).
Sunday, January 23, 2011
What a Week!
What a week this has been. I left, very reluctantly, to go to my Arbonne convention in Las Vegas. I was so worried that Rob would get worse as the week wore on.
All during the week, he didn't feel well at all. I am grateful for friends and family to get the kids to where they needed to go as well as all of their meals so they wouldn't starve.
I am so incredibly grateful that despite my worries of leaving Rob, I was able to go to Las Vegas and enjoy my conference and be with my amazing Arbonne sisters. It was a week of incredible training, surrounded by positive men and woman, and being uplifted! It was nice to have the technology to text my family and have constant communication to know that everyone was well off.
When I returned home on Friday (late - my airplane had electrical issues and we had to de-plane, board another, and were in the air an hour later), Rob's dad drove us straight to Rob's oncologist for his first round of chemo.
We saw a physician's assistant before starting his chemo. His blood pressure & weight looked good (despite not eating more than a meal's worth of food during an entire week). His oxygen levels, however, were dismal. Remember how they were 84% when we were at the ER five days earlier? Well, on two liters of oxygen, they were at 83%. Yeah, they moved pretty quickly to increase it to four. Huh. Not sure how we can know this in the future. I am planning on contacting the home health agency to have them come out to our home periodically to check it - don't want it slowly slipping and have no idea.
Saturday (yesterday), he felt absolutely terrible. He received scripts for three, yes three more (he already had one) anti-nausea medicine. Not working so well. Between being sick and feeling sick, it was a very busy day. Holy moley.
We decided that we are going to find one thing each day for which to be grateful. I won't tell you what Friday's gratitude entry was - pitiful, really, but Saturday, it was: "I was finally able to sleep during the day." That is spectacular!
Generally, sleep is the one thing we can look forward to when unwell, but that has alluded Rob for the past week. He vacillates between our bed (which is now on an angle - I say it is 45 degrees, but Rob assures me that it is not) and his cancer chair (remember the Lazy Boy?).
Today, he was awake for about three hours total. Yes, he has gotten back into his newborn sleeping habits again.
All during the week, he didn't feel well at all. I am grateful for friends and family to get the kids to where they needed to go as well as all of their meals so they wouldn't starve.
I am so incredibly grateful that despite my worries of leaving Rob, I was able to go to Las Vegas and enjoy my conference and be with my amazing Arbonne sisters. It was a week of incredible training, surrounded by positive men and woman, and being uplifted! It was nice to have the technology to text my family and have constant communication to know that everyone was well off.
When I returned home on Friday (late - my airplane had electrical issues and we had to de-plane, board another, and were in the air an hour later), Rob's dad drove us straight to Rob's oncologist for his first round of chemo.
We saw a physician's assistant before starting his chemo. His blood pressure & weight looked good (despite not eating more than a meal's worth of food during an entire week). His oxygen levels, however, were dismal. Remember how they were 84% when we were at the ER five days earlier? Well, on two liters of oxygen, they were at 83%. Yeah, they moved pretty quickly to increase it to four. Huh. Not sure how we can know this in the future. I am planning on contacting the home health agency to have them come out to our home periodically to check it - don't want it slowly slipping and have no idea.
Saturday (yesterday), he felt absolutely terrible. He received scripts for three, yes three more (he already had one) anti-nausea medicine. Not working so well. Between being sick and feeling sick, it was a very busy day. Holy moley.
We decided that we are going to find one thing each day for which to be grateful. I won't tell you what Friday's gratitude entry was - pitiful, really, but Saturday, it was: "I was finally able to sleep during the day." That is spectacular!
Generally, sleep is the one thing we can look forward to when unwell, but that has alluded Rob for the past week. He vacillates between our bed (which is now on an angle - I say it is 45 degrees, but Rob assures me that it is not) and his cancer chair (remember the Lazy Boy?).
Today, he was awake for about three hours total. Yes, he has gotten back into his newborn sleeping habits again.
Sunday, January 16, 2011
Wild and Wacky Weekend
Friday, Rob had an appointment to receive his B-12 shots in preparation for the chemo the following week. The doctor wanted to see him as well since he is feeling crummy again. Rob left work early so he could get to the appointment on time. When he got home, he wasn't feeling well at all. He took his temperature and it was 101.7. He rested for a little while.
Our kids were out of school on Friday. We thought it might be good for them to come and see where Rob's chemo will take place - make it less scary for them. Jacob ended up going to a friend's home to work on his science fair project. So it was only Gabrielle and Noah that accompanied us.
When we got to his appointment, Rob was looking a little (well a lot) awful. The nurse recorded his vitals. He had lost 3.5 pounds since last week, his oxygen levels were 95 (if I remember correctly), and his blood pressure was good. However, his temperature was 103. I didn't think that was too high - after all we don't get too concerned with children's being that high. The nurse let me know that a fever that high is never a good thing in adults.
They whisked him into the chemotherapy area and inserted an IV and doused him full of IV fluids and retrieved some blood to run some tests. We explained that his pneumonia really hasn't gone away since the beginning of December.
Rob's cycle of antibiotics:
Anywhooo. The physician's assistant that saw Rob told us that something else is going and he was going to admit him. They would get some IV antibiotics and possibly start his chemotherapy early.
Meanwhile, Gabrielle and Noah are getting a little worried. It was close to the time when Rob's sister, Tarali, was leaving work (she works one floor below in the radiation therapy department). She took them home for us since we weren't sure how long things would take. She had to talk to them a bit as they were feeling distressed.
When I got back from the hand-off, the PA said, "Well, it looks like his white blood count isn't really any different than last week and the blood culture won't be back for a few days. We are going to give you some different antibiotics to see if these work better. We aren't going to admit you now, but if your fever doesn't go away, if you feel worse, or you have trouble breathing, you need to go to the emergency room immediately." We promised and went home.
Friday evening: coughing, fever
Saturday: coughing (surprised?), fever, up all night, fever, coughing
Sunday: exhausted from no sleeping and abdomen sore from all the coughing, looking pretty much terrible.
Rob stayed at home today instead of going to church. During the meeting, Noah was having a difficult time being still. He is very worried about Rob's state of health. I asked him if I were to text him, would that ease his mind. (Yes, I know that I shouldn't be using my phone to text in the middle of church, but, I think that this is a very good reason to do so.)
Noah was able to communicate with his dad and I was able to find out whether we needed to go the the ER or wait until tomorrow to see his oncologist. It was decided to go to the ER.
We got there and his heart rate was 130 and his oxygen level was 84 (levels 90 and lower is in the danger zone). The triage nurse quickly got some oxygen and a wheelchair and put his chart in the 'orange' zone (yellow=people can wait, orange=get 'em in quick, red=they are dying right now).
Long story short (or five hours later) - Rob had IV antibiotics, anti-nausea meds, an oral dose of antibiotics, an X-ray, a blood panel, and another blood culture. He is now on oxygen. We are not certain whether this will be a permanent fixture around the house, work, etc., but he sure looks cute, what with the clear tubing up his nose, around his ears, and around his neck like beautiful jewelry.
It was a little scary seeing the oxygen level so low. Generally, his is generally between 94-96.
Honestly, I know that both Rob & I are looking forward to sleep tonight (that is if his coughing will let up enough to do so).
Our kids were out of school on Friday. We thought it might be good for them to come and see where Rob's chemo will take place - make it less scary for them. Jacob ended up going to a friend's home to work on his science fair project. So it was only Gabrielle and Noah that accompanied us.
When we got to his appointment, Rob was looking a little (well a lot) awful. The nurse recorded his vitals. He had lost 3.5 pounds since last week, his oxygen levels were 95 (if I remember correctly), and his blood pressure was good. However, his temperature was 103. I didn't think that was too high - after all we don't get too concerned with children's being that high. The nurse let me know that a fever that high is never a good thing in adults.
They whisked him into the chemotherapy area and inserted an IV and doused him full of IV fluids and retrieved some blood to run some tests. We explained that his pneumonia really hasn't gone away since the beginning of December.
Rob's cycle of antibiotics:
- After the second day of antibiotics, he starts feeling better.
- Then about ten days after the last dose of antibiotics he starts feeling crummy again.
Anywhooo. The physician's assistant that saw Rob told us that something else is going and he was going to admit him. They would get some IV antibiotics and possibly start his chemotherapy early.
Meanwhile, Gabrielle and Noah are getting a little worried. It was close to the time when Rob's sister, Tarali, was leaving work (she works one floor below in the radiation therapy department). She took them home for us since we weren't sure how long things would take. She had to talk to them a bit as they were feeling distressed.
When I got back from the hand-off, the PA said, "Well, it looks like his white blood count isn't really any different than last week and the blood culture won't be back for a few days. We are going to give you some different antibiotics to see if these work better. We aren't going to admit you now, but if your fever doesn't go away, if you feel worse, or you have trouble breathing, you need to go to the emergency room immediately." We promised and went home.
Friday evening: coughing, fever
Saturday: coughing (surprised?), fever, up all night, fever, coughing
Sunday: exhausted from no sleeping and abdomen sore from all the coughing, looking pretty much terrible.
Rob stayed at home today instead of going to church. During the meeting, Noah was having a difficult time being still. He is very worried about Rob's state of health. I asked him if I were to text him, would that ease his mind. (Yes, I know that I shouldn't be using my phone to text in the middle of church, but, I think that this is a very good reason to do so.)
Noah was able to communicate with his dad and I was able to find out whether we needed to go the the ER or wait until tomorrow to see his oncologist. It was decided to go to the ER.
We got there and his heart rate was 130 and his oxygen level was 84 (levels 90 and lower is in the danger zone). The triage nurse quickly got some oxygen and a wheelchair and put his chart in the 'orange' zone (yellow=people can wait, orange=get 'em in quick, red=they are dying right now).
Long story short (or five hours later) - Rob had IV antibiotics, anti-nausea meds, an oral dose of antibiotics, an X-ray, a blood panel, and another blood culture. He is now on oxygen. We are not certain whether this will be a permanent fixture around the house, work, etc., but he sure looks cute, what with the clear tubing up his nose, around his ears, and around his neck like beautiful jewelry.
It was a little scary seeing the oxygen level so low. Generally, his is generally between 94-96.
Honestly, I know that both Rob & I are looking forward to sleep tonight (that is if his coughing will let up enough to do so).
Monday, January 10, 2011
A New Year
As much as I enjoyed the holidays with the family, I am really glad that December is over. No, it is not because of all the hustle and bustle of the season. Rob really had a rough month.
As you read in the previous post, he had pneumonia at the beginning of the month. He sort of got better, but not really. The coughing (which is ever present anyway) seemed to lessen a bit after being on his antibiotic, but then about 13 days after his last dose, he started right back up again. The cracked/broken rib didn't help much. The pain was pretty intolerable.
So: to sum up December...
Coughing
PainCoughing
Painand
moreCoughing.
Cancer: growing (surprised, right?) - the largest tumor (according to the report) is 9 cm long by 4.5 cm wide - wahoo! So cute. The little tyke just trying to grow up.
Anyway, I digress.
Basically, he said that at this point in time, if we are going to do something, we really need to it now. He gave us three options.
- Do nothing
- Start chemotherapy - the kind that he would have Rob take is Carboplatin/Alimpta. Supposedly, he will not lose his hair (what hair anyway?), but there will be some side effects like fatigue, possible neuropathy (where your extremities hurt and tingle like someone is poking you with pins, and every step hurts), and we read about some other possible side effects like nausea and weight loss.
- Join a Phase One Study (that means that they just finished testing on animals and are ready for the human guinea pigs) at Huntsman at the University of Utah. We don't know any of the side effects or whether he would be a candidate.
Sunday, we had the whole family fasting and praying on our behalf. Poor Noah (he is eight). He thought that he was going to pass out from not eating. It was a big deal for him.
I feel like this whole week has been like I am sitting on a giant pendulum. At first, I was indifferent to the chemo option. Next, I worry how it will effect Rob and whether it is going to decrease his quality of life. We know that this will not cure him. Then, I think, well, it may just assist in making those pesky tumors stop growing. ARGH!
Rob has decided to try the chemo route once more. I think that it is safe to say that the study is out of the picture at this point.
This Friday, he will go in to visit the lovely nurses at Utah Cancer Specialists, and get a script for folic acid and receive a B-12 shot (both of which are to help stave off neuropathy).
The following Friday, January 21, we will go and get the poison pumped into his body, in hopes that it will make the cancer not grow as quickly. After two to three treatments (each three weeks apart) we will re-evaluate. He will have another scan and we will decide whether to continue with the chemotheraphy.
With this breaking news, I will probably be updating the blog a bit more - to keep you apprised of his health. I know you are all waiting with bated breath...
Sunday, December 5, 2010
Pa Monney Ahhhh
Rob has been coughing and hacking like a veteran smoker. This is more than his usual lung-cancer-coughing-fits.
Friday afternoon and evening, Rob could hardly breathe, his left ribs hurt so much. Every breath he took was painful. After many hours of this, we asked his Dad and our neighbor, Forrest to come and give Rob a priesthood blessing. He was able to get a little sleep (in the family room on the cancer chair).
Saturday, we went to the doctor. The doctor gave him a good work-up and ordered an x-ray. About an hour later, the doctor told us that Rob has pneumonia and a cracked rib (presumably from said hacking).
We left there with three prescriptions: heavy-duty antibiotics, steroids, and an inhaler to help open his airway.
Today, Sunday, the steroids seem to be working. He can cough without being in excruciating pain (just a lot of it). He is exhausted from lack of sleep and very worn out from lungs working overtime, but hopefully, will be well soon.
We will be making an appointment to see his oncologist (per the family doctor's request) to make sure that the medicine she gave to Rob is correct for his 'situation'.
Friday afternoon and evening, Rob could hardly breathe, his left ribs hurt so much. Every breath he took was painful. After many hours of this, we asked his Dad and our neighbor, Forrest to come and give Rob a priesthood blessing. He was able to get a little sleep (in the family room on the cancer chair).
Saturday, we went to the doctor. The doctor gave him a good work-up and ordered an x-ray. About an hour later, the doctor told us that Rob has pneumonia and a cracked rib (presumably from said hacking).
We left there with three prescriptions: heavy-duty antibiotics, steroids, and an inhaler to help open his airway.
Today, Sunday, the steroids seem to be working. He can cough without being in excruciating pain (just a lot of it). He is exhausted from lack of sleep and very worn out from lungs working overtime, but hopefully, will be well soon.
We will be making an appointment to see his oncologist (per the family doctor's request) to make sure that the medicine she gave to Rob is correct for his 'situation'.
Sunday, November 14, 2010
October's Scan and an Incredible Man
Yes, I am aware that it is November. I am uncertain as to why I haven't updated Rob's blog to post an update on his latest scan. Maybe I am just tired. Hmmm.
Before I proceed, my sister-in-law's father, Phil, was diagnosed with the same cancer as Rob back in February of this year. He was unable to have surgery because of the stage the cancer was in. He, instead, chose chemotherapy. For a little while, he was doing well. In just seven months, he started declining. He died in October. We drove to his funeral with heavy hearts. I didn't know him well, at all, but to many, he was amazing: husband, father, grandfather, County Sheriff, Utah Highway Patrol Officer, neighbor, and friend.
The funeral was incredible. There was such an outpouring of love for this man. There were so many uniformed officers, we thought that if there was a time to wreak havoc in a small town, that would have been the day, since all the police force seemed to be at his funeral. At the grave site, a 21 gun salute was heard, bagpipes were played, a police helicopter flew overhead and then nearly landed, and then there was a last call. A woman's voice was heard on the walkie talkies (not sure if that is what they call them) to salute Phil.
It was heart-wrenching to see the sorrow from Phil's family. He was so incredibly loved by so many people.
Maybe that is why I haven't written. Too many emotions. Needed time to process...
So, Rob had a scan the first week of October. Essentially, the cancer is growing. Not doubling, but thirding (is that even a measurement???). So that is terrific news! Growing, yes. Doubling, no.
Most things in life you want to grow...your garden, your children, your bank account. Cancer? Not so much.
One thing that is interesting about his last scan is that several of the cancer blobs are starting to join together. Siamese twins? Perhaps they are lonely and just feel the need to touch one another. I don't know. Wacky...
For the last four weeks, Rob has had a fantastic headache. Just one that is annoying enough to notice that it is there. Like a mosquito buzzing around your head, but every time you turn to swat it, it flies beyond your field of vision.
A week ago, we were going to run to the grocery store and Rob got out of his 'cancer chair.'
Let me tell you. That was very, very exciting. It scared me to death! (No pun intended.) As he was falling, apparently, he caught his little toe on something and managed to dislocate it. (It is bruised still!) At any rate, after my heart rate slowed a bit, we were able to access any damage. Other than the toe, he was fine.
I rang his oncologist's office on Monday. They wanted him to go in for a scan of his brain. (Lung cancer often metastasizes to the brain and/or bones.) We checked the report later that day. Luckily, there is nothing special about his brain (and I mean that in the nicest way).
Again, this just solidifies my opinion of the man. He is A. B. Normal. There is nothing wrong with him, but he faints. Maybe too much excitement at the prospect of going grocery shopping.
By the way, two weeks ago, we celebrated his 40th birthday! We are so incredibly grateful for the 5.5 extra years we have been given with him. We are so blessed!
Before I proceed, my sister-in-law's father, Phil, was diagnosed with the same cancer as Rob back in February of this year. He was unable to have surgery because of the stage the cancer was in. He, instead, chose chemotherapy. For a little while, he was doing well. In just seven months, he started declining. He died in October. We drove to his funeral with heavy hearts. I didn't know him well, at all, but to many, he was amazing: husband, father, grandfather, County Sheriff, Utah Highway Patrol Officer, neighbor, and friend.
The funeral was incredible. There was such an outpouring of love for this man. There were so many uniformed officers, we thought that if there was a time to wreak havoc in a small town, that would have been the day, since all the police force seemed to be at his funeral. At the grave site, a 21 gun salute was heard, bagpipes were played, a police helicopter flew overhead and then nearly landed, and then there was a last call. A woman's voice was heard on the walkie talkies (not sure if that is what they call them) to salute Phil.
It was heart-wrenching to see the sorrow from Phil's family. He was so incredibly loved by so many people.
Maybe that is why I haven't written. Too many emotions. Needed time to process...
So, Rob had a scan the first week of October. Essentially, the cancer is growing. Not doubling, but thirding (is that even a measurement???). So that is terrific news! Growing, yes. Doubling, no.
Most things in life you want to grow...your garden, your children, your bank account. Cancer? Not so much.
One thing that is interesting about his last scan is that several of the cancer blobs are starting to join together. Siamese twins? Perhaps they are lonely and just feel the need to touch one another. I don't know. Wacky...
For the last four weeks, Rob has had a fantastic headache. Just one that is annoying enough to notice that it is there. Like a mosquito buzzing around your head, but every time you turn to swat it, it flies beyond your field of vision.
A week ago, we were going to run to the grocery store and Rob got out of his 'cancer chair.'
(for those of you who don't know, that is a Lazy Boy recliner that Rob's brother, Gregg gave him right after his first surgery - so he could lie in a semi-horizontal position at night and breathe)As he got up, he held onto our big curio cabinet and then proceeded to faint. After he fainted, he passed out.
Let me tell you. That was very, very exciting. It scared me to death! (No pun intended.) As he was falling, apparently, he caught his little toe on something and managed to dislocate it. (It is bruised still!) At any rate, after my heart rate slowed a bit, we were able to access any damage. Other than the toe, he was fine.
I rang his oncologist's office on Monday. They wanted him to go in for a scan of his brain. (Lung cancer often metastasizes to the brain and/or bones.) We checked the report later that day. Luckily, there is nothing special about his brain (and I mean that in the nicest way).
Again, this just solidifies my opinion of the man. He is A. B. Normal. There is nothing wrong with him, but he faints. Maybe too much excitement at the prospect of going grocery shopping.
As a side note: he hasn't fainted before that incident nor has he fainted since. No worries, he will not faint during staff meeting. He is NOT a ticking time bomb.
By the way, two weeks ago, we celebrated his 40th birthday! We are so incredibly grateful for the 5.5 extra years we have been given with him. We are so blessed!
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