Our annual neighborhood Halloween Party was quite fun on Friday the 31st. There was a chili cook-off, a costume parade, a no-hands doughnut-on-a-string eating contest, magic show, bonfires and deep fried scones!
My friend Laura was to arrive from CT around 4 but her plane delayed her until midnight. So she missed the party. Unfortunately I was not feeling well when she arrived. Saturday morning Tim talked with the on-call oncologist to see if we again could by pass the ER and be admitted directly onto the 9th floor at IMHC. That Doctor reviewed my recent history and agreed to admit me Saturday evening.
I saw the admitting doctor Sunday morning and basically he said there's not much I can do so we'll just wait until the onc team comes Monday and you can meet with them. He had no plan of action so in his mind it was ok for me to sit around and wait another day before a plan of action unrolled.
So I put myself on the ice chips "diet" knowing that was the protocol last time and I waited. I waited until late Monday afternoon to see the doctor. So, just about 48 hours AFTER admission, I had my first Dr. meeting. She was not a helpful doctor nor did she offer a good plan of action.
On Tuesday I recommended that I have an NG tube. I had vomited a couple times earlier that morning and figured that was the next protocol. I also inquired about abdomen x-rays -- they had done those nearly every day during my last hospitalization to watch the progression of the partial blockage. Yes, they would schedule one. They only did the one position laying on the x-ray table, which I commented that they usually did the x-ray standing against the machine and AND laying n the table. Well, the next day I was back doing both x-rays.
Laura stayed Saturday, Sunday and Monday nights with me in the hospital. We reminisced about our Texas days, camping adventures in Austin, drive to Connecticut, trips to the beach in Mexico, Morocco, southern Spain and Portugal. Amazing how she was able to recall many details that didn't ring a bell to me and vice versa. Denise was kind enough to pick up Laura and take her to the airport for her flight out Tuesday afternoon. It was a short visit with Laura but I am so grateful she got to fly in for just 3.5 days!!
I got on the phone and made calls to my other doctors. I arranged an appointment with my gyn-onc to come to the hospital. Dr. Z came and again Tim, Mary and Laura were able to be my eyes and ears. Mary fielded the questions which was so very helpful because she is an RN and experienced in critical care. She took notes too.
Surgery was not an option per Dr. Z's experience and advice. Earlier advice of placing a stint or stints in the intestines was not an option at this point too.
I was also pointed toward the pain mgmt specialist at my onc center. Great lady, Dr MP! Laura C. had called her, explained my situation and how I needed to see her. God stepped in! Dr. MP had an opening at 1 pm, was in her office which is at the hospital complex and she was going to come visit me in my hospital room - which is something she doesn't normally do!! I felt very blessed. Tim was able to stay after the earlier meeting with Dr. Z and attend the meeting with Dr. MP. Our friends Laura, Mary and Nellie were able to be there too - our topic was Palliative Care. Again, Mary took notes.
The Palliative Care meeting was so very helpful! Why we hadn't done this during my 1st or 2nd hospital stay I don't know:-). We discovered that my condition would have me returning to the hospital more often than not. The tumors -- which were invisible to the ct scan machine-- were undoubtedly sprinkled throughout my abdomen like little tiny pieces of sticky rice tethering, pulling, looping, and binding my small intestines. Plus I had the large bowel obstruction caused by tumors pushing in on the intestine. We were not ale to see exactly how many obstructions or partial obstructions there my be, but with this type of cancer they would indeed continue growing and causing obstructions.
Dr MP suggested a drug called "Octiratide" to get the bowels started. It had been more than a week since any movement or passing of gas. Palliative's goal was to manage the pain at home and allow me to live a qualitative life. We all agreed that it was indeed the best option. So we pulled in the hospitals' social worker so he could get the paper work rolling (it was Friday) and get me released Monday.
Monday came and we got a visit from the hospital's Hospice Team. I honestly thought the guy was a salesman because of the amount of details and positive info he gave. He told me he was an RN with Hospice. Basically the difference between the two is that the hospice nurses have more flexibility and less oversight than the Palliative nurse staff. So I am not sure how we went from talking to Palliative Home Care to Hospice Home Care and then going home with Hospice, but we did.
I was discharged Monday, November 10 under Hospice care.
(Nana Nellie arrived Nov 6 and left Nov 16.)
Wednesday, December 3, 2014
Last Camping Trip
October - my favorite month of the year, especially in the midwest. The trees, the smells, the warm days and cool night.
We had planned a camping trip with our dear friends the Collings at Thousand Lakes RV Camp for my birthday weekend. We had been looking forward to it since we planned it last spring.
I had been having more "episodes" of the severe abdominal pains. I had no pain meds on hand since I had just gone through all my meds and discarded the expired ones.
I saw my local oncologist Monday to re-establish that my future chemo treatments will be received in SLC (instead of phoenix).
By Tuesday my pain was out of control. I was on the couch in severe pain. No one at CTCA would respond to my calls for pain meds. (I was so disappointed). I called my local onc and she wrote a prescription for me. Of course a new law was passed on Monday Oct 6 regarding the narcotics that I had just thrown out. So we could not have the prescription faxed to the pharmacist. we had to physically pick up the script and take it to the pharmacist. Finally about 6/7pm I had pain meds in my system.
At that point, we decided we better cancel our upcoming camping trip. Our camping site was hours from any medical facility. So Tim was off of work for the weekend - my 51st birthday weekend! Friday we made a call to my local onc to see if she would admit me into the hospital. The weekend was upon us and I knew that a trip to the hospital was inevitable. I didn't want to go through the ER over a weekend.
We called my local oncologist to request admittance back into the hospital. They told us we needed to be seen in person. So we packed me in the van, went to the cancer center and waited. we finally saw one of the oncologists. she agreed to admit me. Went to hospital and I stayed there through 2 weekends. Oct 10-22. X-rays again confirmed the partial bowel obstruction.
Ice chips, no liquids no food for the next 8 days. IV saline only. Reintroduce clear liquids, then full liquid, soft and then special diet of now/low fiber. Within the 1st 24 hours, I had a hypoglycemic event. With no food prior to my admittance and ice chips only my blood sugar was 46 in the morning!! From there we had to have sugar in my IV. They added an NG tube on Saturday to help control the vomiting of stuff not going down my intestines.
I had a plethora of visitors each day, especially Sunday my birthday. My room was certainly the happiest on the 9th floor!! Over the next 12 days, nurses, doctors and PAs actually commented on nice it looked and smelled ...we had a Scentsy candle going with pumpkin spice in our room. Greetings cards decorated the walls, water color paintings were brought, lots of bouquets and plants sat on the ledge of the family-room-sized window and on any available space. My bed normally positioned directly in front of the TV was turned 90 degrees to face the 20' x 20' window overlooking the mountains, park and stores. Medical staff commented on the positioning of my bed and I advocated the necessity of turning ALL the beds because the view was much more healing.
I literally watched fall overtake the valley of trees! Each day a little more color would show up on the canvas of trees outside of my window. It was magnificent. I love the fall!
Tim and Laura took turns staying the night at the hospital and caring for David. How can we ever thank or repay all these wonderful people who continue to bless us?? Staying overnight, taking care of David, takng care of me, providing meals for us, keeping up with our yards and fall leaves, running to he grocery store, doing our laundry, cleaning our home, and bringing me clothes. God, we rely on you to bless them. We are overwhelmed with their love which obviously demonstrates your love for us. Thank you so very much!
We had planned a camping trip with our dear friends the Collings at Thousand Lakes RV Camp for my birthday weekend. We had been looking forward to it since we planned it last spring.
I had been having more "episodes" of the severe abdominal pains. I had no pain meds on hand since I had just gone through all my meds and discarded the expired ones.
I saw my local oncologist Monday to re-establish that my future chemo treatments will be received in SLC (instead of phoenix).
By Tuesday my pain was out of control. I was on the couch in severe pain. No one at CTCA would respond to my calls for pain meds. (I was so disappointed). I called my local onc and she wrote a prescription for me. Of course a new law was passed on Monday Oct 6 regarding the narcotics that I had just thrown out. So we could not have the prescription faxed to the pharmacist. we had to physically pick up the script and take it to the pharmacist. Finally about 6/7pm I had pain meds in my system.
At that point, we decided we better cancel our upcoming camping trip. Our camping site was hours from any medical facility. So Tim was off of work for the weekend - my 51st birthday weekend! Friday we made a call to my local onc to see if she would admit me into the hospital. The weekend was upon us and I knew that a trip to the hospital was inevitable. I didn't want to go through the ER over a weekend.
We called my local oncologist to request admittance back into the hospital. They told us we needed to be seen in person. So we packed me in the van, went to the cancer center and waited. we finally saw one of the oncologists. she agreed to admit me. Went to hospital and I stayed there through 2 weekends. Oct 10-22. X-rays again confirmed the partial bowel obstruction.
Ice chips, no liquids no food for the next 8 days. IV saline only. Reintroduce clear liquids, then full liquid, soft and then special diet of now/low fiber. Within the 1st 24 hours, I had a hypoglycemic event. With no food prior to my admittance and ice chips only my blood sugar was 46 in the morning!! From there we had to have sugar in my IV. They added an NG tube on Saturday to help control the vomiting of stuff not going down my intestines.
I had a plethora of visitors each day, especially Sunday my birthday. My room was certainly the happiest on the 9th floor!! Over the next 12 days, nurses, doctors and PAs actually commented on nice it looked and smelled ...we had a Scentsy candle going with pumpkin spice in our room. Greetings cards decorated the walls, water color paintings were brought, lots of bouquets and plants sat on the ledge of the family-room-sized window and on any available space. My bed normally positioned directly in front of the TV was turned 90 degrees to face the 20' x 20' window overlooking the mountains, park and stores. Medical staff commented on the positioning of my bed and I advocated the necessity of turning ALL the beds because the view was much more healing.
I literally watched fall overtake the valley of trees! Each day a little more color would show up on the canvas of trees outside of my window. It was magnificent. I love the fall!
Tim and Laura took turns staying the night at the hospital and caring for David. How can we ever thank or repay all these wonderful people who continue to bless us?? Staying overnight, taking care of David, takng care of me, providing meals for us, keeping up with our yards and fall leaves, running to he grocery store, doing our laundry, cleaning our home, and bringing me clothes. God, we rely on you to bless them. We are overwhelmed with their love which obviously demonstrates your love for us. Thank you so very much!
Tuesday, December 2, 2014
Follow up
Follow up with GP after hospital discharge --- why couldn't I have had this doctor when I experienced my very first symptoms way back in the fall of 2011??
Dr. Pugh is the best. I got in quickly to see him. He listened, he read my chart and suggested a meeting this week with a GI specialist. His assistant had an appointment arranged with someone before I left the office.
Saw the GI Specialist. He was great too. Much better than my experience with the GI practice/practitioners who tossed me back and forth to the GYN during my initial diagnosis. He suggested a closer look at the small bowl partial obstruction area through a specific CT Scan. I got the results and took them to CTCA with me.
I was scheduled for another chemo treatment for this CTCA trip Sept 19. I pushed for "NO chemo" until we found out what the intestinal/bowel issue was. BECAUSE the chemo was only going to exasperate any bowel problem. So the onc team agreed. We quickly met with Dr. K, the GI specialist at CTCA to go over the recent CT Scan in SLC. He was suspicious that whatever the blockages were were not just scar tissue but disease spreading. He suggested a colonoscopy and endoscopy to gather more information.
Laura and I returned to CTCA the following week and I had the procedures done. Something was pushing in on the small intestine and he saw a partial obstruction in the lower bowel and then could not see past the 18cm point. He did not see any disease penetrating or growing on the inside of intestinal walls or stomach.
I believe I had a round of chemo.
I saw my GYN ONC Monday and discussed with her all the recent events and results and thought maybe a stint for the partial obstruction could be in the future.
Dr. Pugh is the best. I got in quickly to see him. He listened, he read my chart and suggested a meeting this week with a GI specialist. His assistant had an appointment arranged with someone before I left the office.
Saw the GI Specialist. He was great too. Much better than my experience with the GI practice/practitioners who tossed me back and forth to the GYN during my initial diagnosis. He suggested a closer look at the small bowl partial obstruction area through a specific CT Scan. I got the results and took them to CTCA with me.
I was scheduled for another chemo treatment for this CTCA trip Sept 19. I pushed for "NO chemo" until we found out what the intestinal/bowel issue was. BECAUSE the chemo was only going to exasperate any bowel problem. So the onc team agreed. We quickly met with Dr. K, the GI specialist at CTCA to go over the recent CT Scan in SLC. He was suspicious that whatever the blockages were were not just scar tissue but disease spreading. He suggested a colonoscopy and endoscopy to gather more information.
Laura and I returned to CTCA the following week and I had the procedures done. Something was pushing in on the small intestine and he saw a partial obstruction in the lower bowel and then could not see past the 18cm point. He did not see any disease penetrating or growing on the inside of intestinal walls or stomach.
I believe I had a round of chemo.
I saw my GYN ONC Monday and discussed with her all the recent events and results and thought maybe a stint for the partial obstruction could be in the future.
Last Boggess Garage Sale!
Tim accompanied me back to CTCA August 24, 25 and 26th. Treatment # 2.Went well.
We had a family camping trip scheduled for the upcoming Labor Day weekend at Williard Bay State Park. which we cancelled due to me not feeling good. The abdomen pains were sever enough that I didn't want to be caught an hour away from a medical facility. Tim set up the tent in the back yard and so we cooked , played games, watched the Kindle and camped out back -- that was fun for us. David always likes sleeping in the tent!!
September 8th I was admitted into the hospital. God is so good! I had kept quiet all night long with the pains. Watching the clock tick tock and thinking, it will go away and I need to let Tim sleep at least until his alarm goes off.
At 5 am I calmly told Tim, I think we need to go to the hospital. He texted Laura and she immediately offered to come take care of David - get him ready for school and take him to kindergarten. We prayed with her when she arrived that the ER would not be busy and that I would not have to wait long. God answered our prayer! We arrived just after 6 am. Not a soul in the ER except staff. They took my "vital info" (insurance!) and as I was choosing a seat in the waiting room, they said why don't we just take you back to a room. Thank you God!!
From there we had a great nurse and a doc. I was admitted into the hospital around 2. The delay was due to "who's jurisdiction shall we put her under". GI vs. oncology. I was wheeled up to the 9th floor. I asked the gurney guy, "what is the 9th floor?" Thinking he would say oncology, he said he didn't know. I think he was being kind to spare me the word oncology :-)
I stayed until Wednesday afternoon - Partial bowel obstruction was the diagnosis and a low fiber diet was given. Laura and Tim alternated between staying with me at the hospital. We turned my bed from facing the TV to facing the 15' x 15' picture window. What a beautiful view we had from the 9th floor, overlooking MT. Olympus, Murray Park, State Street, Chick Fil-A, Costco. What a great scenery to feast upon while recovering!
I was to follow up with my GP upon discharge.
The strange thing about the partial bowel obstruction is that some days I had no symptoms and other days -as quick as a flash - I was curled up in a fetal position.
So I was out of the hospital and decided to pull together one last garage sale for the Boggess household! YES, a garage sale! It had been on my mind throughout the spring and summer and now was the time. Either have it or pack everything up and take it to the Thrift Store. I had been gathering stuff throughout the house and piling it in the guest room. since the spring. I quickly assessed whether or not I had enough to make a good garage sale. I did. So I set the sale for Saturday and began dragging everything out to the garage. It felt good to have the decision made and we were moving forward!! I say "we", but really it was just me. The only thing about a garage sale Tim enjoys is shopping at them. I could hold a garage sale every month, that's how much I like being involved in them. So I had agreed with Tim, that I would not mention having any more garage sales in the future after this one!
As I worked on pricing items and borrowing tables from neighbors, neighbors brought over goods for me to sell at the garage sale. Friday night Small Group came and I invited everyone for a pre-sale peek!! Actually it was a "pre-sale please take home with you tonight" invitation.
I was able to round up some last minute helpers for the garage sale. Miss Karla - David's pre-K school teacher showed up at 6 am with her girls to help us set up. Melinda and Patti and my neighbor McKelle helped with set and up and the entire day's sale.
It turned out to be a beautiful day weather wise. Sitting with girls and chatting all day was a bonus. Tim was on duty to clean the church early in the morning so David hung out with us girls for the first part of the garage sale. Once Tim finished, he took David for their weekly library visit. Everyone pitched in to close it down at 3, pack up the van and take everything left over to the Thrift Store. The garage sale turned out to be a success!!! 10% of what we earned went toward Operation Christmas Child shoe boxes!!
We had a family camping trip scheduled for the upcoming Labor Day weekend at Williard Bay State Park. which we cancelled due to me not feeling good. The abdomen pains were sever enough that I didn't want to be caught an hour away from a medical facility. Tim set up the tent in the back yard and so we cooked , played games, watched the Kindle and camped out back -- that was fun for us. David always likes sleeping in the tent!!
September 8th I was admitted into the hospital. God is so good! I had kept quiet all night long with the pains. Watching the clock tick tock and thinking, it will go away and I need to let Tim sleep at least until his alarm goes off.
At 5 am I calmly told Tim, I think we need to go to the hospital. He texted Laura and she immediately offered to come take care of David - get him ready for school and take him to kindergarten. We prayed with her when she arrived that the ER would not be busy and that I would not have to wait long. God answered our prayer! We arrived just after 6 am. Not a soul in the ER except staff. They took my "vital info" (insurance!) and as I was choosing a seat in the waiting room, they said why don't we just take you back to a room. Thank you God!!
From there we had a great nurse and a doc. I was admitted into the hospital around 2. The delay was due to "who's jurisdiction shall we put her under". GI vs. oncology. I was wheeled up to the 9th floor. I asked the gurney guy, "what is the 9th floor?" Thinking he would say oncology, he said he didn't know. I think he was being kind to spare me the word oncology :-)
I stayed until Wednesday afternoon - Partial bowel obstruction was the diagnosis and a low fiber diet was given. Laura and Tim alternated between staying with me at the hospital. We turned my bed from facing the TV to facing the 15' x 15' picture window. What a beautiful view we had from the 9th floor, overlooking MT. Olympus, Murray Park, State Street, Chick Fil-A, Costco. What a great scenery to feast upon while recovering!
I was to follow up with my GP upon discharge.
The strange thing about the partial bowel obstruction is that some days I had no symptoms and other days -as quick as a flash - I was curled up in a fetal position.
So I was out of the hospital and decided to pull together one last garage sale for the Boggess household! YES, a garage sale! It had been on my mind throughout the spring and summer and now was the time. Either have it or pack everything up and take it to the Thrift Store. I had been gathering stuff throughout the house and piling it in the guest room. since the spring. I quickly assessed whether or not I had enough to make a good garage sale. I did. So I set the sale for Saturday and began dragging everything out to the garage. It felt good to have the decision made and we were moving forward!! I say "we", but really it was just me. The only thing about a garage sale Tim enjoys is shopping at them. I could hold a garage sale every month, that's how much I like being involved in them. So I had agreed with Tim, that I would not mention having any more garage sales in the future after this one!
As I worked on pricing items and borrowing tables from neighbors, neighbors brought over goods for me to sell at the garage sale. Friday night Small Group came and I invited everyone for a pre-sale peek!! Actually it was a "pre-sale please take home with you tonight" invitation.
I was able to round up some last minute helpers for the garage sale. Miss Karla - David's pre-K school teacher showed up at 6 am with her girls to help us set up. Melinda and Patti and my neighbor McKelle helped with set and up and the entire day's sale.
It turned out to be a beautiful day weather wise. Sitting with girls and chatting all day was a bonus. Tim was on duty to clean the church early in the morning so David hung out with us girls for the first part of the garage sale. Once Tim finished, he took David for their weekly library visit. Everyone pitched in to close it down at 3, pack up the van and take everything left over to the Thrift Store. The garage sale turned out to be a success!!! 10% of what we earned went toward Operation Christmas Child shoe boxes!!
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