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.
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