One Battle Lost...The Love of My Life For 44 Years Is Gone.

It's been a rough 7 (almost 8) weeks. On August 13th Bruce went to Fawcett Memorial Hospital for a bronchoscopy which is a procedure where a Pulmonologist uses a bronchoscope and goes down the bronchi of the lung to look for abnormalities as he had had problems with a recurring pleural effusion between his rt. lung & lower pleural space. This was to be done as an outpatient procedure. When he got into the procedure room the anesthesiologist noticed that Bruce had an irregular heartbeat.  His bronchoscopy was cancelled and Bruce was schedule to have a heart catherization by a cardiologist to see what caused the irregular heart beat. Bruce had a history of an irregular heart due to Atrial Fibrillation & had had a cryoablation procedure  that was to block the abnormal pathway that was causing the irregular heart several years ago. He was followed by his interventional cardiologist for 2 years & then released from his care but obviously the atrial fibrillation had recurred. The cardiac procedure was done on August 14th. He was found to have a 70-80% stenosis of the proximal left anterior descending coronary artery according to one cardiologist & another was apparently asked for an opinion & that cardiologist said 90%. Unfortunately the cardiologists choose to ignore the possible complications & didn't consider the fact that Bruce had already been told that he only had about a year to live due to his cancer diagnosis.  The cardiologists decided that Bruce needed a stent placed even though he had the history of Atrial Fibrillation(irregular heart) & was on medication to control his heart rate.  After placing the stent the cardiologist then put Bruce on 3 blood thinners and sent him home the next day. Putting him on one blood thinner let alone 3 put Bruce at an increased risk of bleeding. Common practice was to be on 1 blood thinner for a month after stenting  due to the risk of a clot developing in the stent causing a complete blockage of the stent & then the patient having a heart attack which isn't necessarily fatal. Apparently it had also become a practice to put the patient on 3 blood thinners while doing the heart catherization. Bruce was sent home the next day on 3 blood thinners. It should also be noted that one of the blood thinners was heparin.

In my opinion that stent should  never have been placed but then we were never asked what we would have wanted.  He would have been better off without the stent...as he is now dead. His chance of the artery blocking  & causing a heart attack (which he might have survived) before the cancer killed him in my opinion would have been slim but of course as I said above we were not asked what we would have wanted done if they found a blockage. The following  day Bruce started vomiting blood & I took him back to the hospital.  We sat in the Emergency Department for several hours & he was finally admitted to the hospital. It turns out that Bruce's platelets had a reaction to the Heparin that he received during the heart catherization & stent placement. Bruce platelets developed antibodies to the heparin & his platelets which caused a drop in the number of platelets he had. He initially had 150,000 and they dropped to 37,000.  When platelet counts get to 20,000 people are usually given a transfusion of platelets but this couldn't be done for Bruce due to the antibodies. This put him at an increase risk of bleeding...which is what happened.

He ended up having a esophagogastroduodenoscopy (EGD) where he was found to have two bleeding arteries that had to be clipped to stop the bleeding & the blood thinners were stopped, although one would remain active for 4-5 days. Now he was at risk for a clot to develop in the stent that had been placed. He was initially admitted to the ICU. It was the weekend so he saw different doctors for each specialty (a hospitalist, gastroenterologist, cardiologist, pulmonologist,  & oncologist) each day. They were all doing their "thing" but no one seemed to be in charge. This continued the following week & soon it had been 5 days...Bruce wasn't getting anything to eat...wasn't even offered any food.  I asked the nurse what he weighed & she said he hadn't been weighed so I asked if he could be weighed. Before Bruce came in to the hospital he weighed 139 lbs although his records said he supposedly weighed 154 lbs (apparently taken from previous records). The day he was weighed he was 121 lbs. Since he couldn't eat as it hurt, someone finally listened to me & started Bruce on TPN which is Total Parental Nutrition which is given intravenously. They also put in a central line in his rt upper arm(PIC line) & a port (an access that is under the skin in the rt chest area). These were put in to give better access for intravenous(IV) feedings as well as antibiotics. The reason for both was the PIC line could be used immediately & the Port would be for use later (although actually it could have been used immediately as well). Bruce was started on antibiotics because he had also developed pneumonia probably from aspirating blood or other stomach fluids into his lungs.

The pulmonologist then decided that Bruce needed to have his pleural effusions drained. He initially had one drained twice  as an outpatient but it recurred again under his rt lung & he also developed a small one above his right lung. The doctor placed two pigtail catheters in the two effusions. Bloody fluid drained from both although the upper one only drained about 10cc & the lower drained another 800cc. The lower one continue to drain bloody fluid slowly over the remaining time Bruce was alive until it had completely filled the chest tube container...3000cc.

Bruce died a slow & painful death. He couldn't eat, he couldn't breath & his pain could not be controlled.  He was moved multiple times to different rooms. He was in the Cardiac Care Unit, the Intensive Care Unit, on the cardiac floor, on  the oncology floor  & was moved twice in one night from the oncology floor to the cardiac floor and  back down to the oncology because he was on a monitor & was noted to have an irregular heart rhythm. He was to be put on Amiodarone a antiarrhythmic medication that requires cardiac monitoring(which he was already receiving). By the time he was moved his heart was back in a regular rhythm & he didn't need the medication so they moved him back down to the oncology floor.   Over the next several days he started having breathing problems & pain. He was given breathing treatments that didn't help & was on Morphine & Dilaudid for pain. He could have the Morphine every 3 hours but initially he had to ask for it & when he did it meant that he actually went a lot longer then 3 hours between doses as the nurse was also caring for possibly 5 other patients & couldn't always bring the Morphine when he needed it. He was then able to get the Morphine scheduled meaning he didn't have to ask for it, it was to be brought every 3 hours automatically but still there were times when he had to wait. The Dilaudid was for break through pain & he was eventually given a PCA machine that would allow him to give himself a dose of Dilaudid. He could give himself 6 doses an hour  but every time the machine needed to be refilled it took the nurses about 1 hour & 3 nurses to get that accomplished...either the nurses didn't know what they were doing or there was something wrong with the machine. Of course he was in pain while waiting for them to get the machine working again.  This along with waiting on breathing treatments when he was short of breath caused Bruce considerable anxiety for which he was never given anything for...except the pain medication.

It was now September 7. Bruce had finally received the chemotherapy starting on 6th, which we had been asking for since December 2014...although now it was a waste because he was already so sick & not expected to improve. I had basically been living at the hospital for all of this time. I think I when home three or four times...to shower & try to sleep. I was told by the gastroenterologist that Bruce's condition was declining quickly & that I should call Tye & tell him to come as quickly as he could from California. Brannon had been with us the whole time that all of this was going on & Tye, too, had been home for at least a  week but initially when Bruce seemed to be doing better & we decided that he should go back home so he could take care of some work.  He was to arrive Tuesday night shortly before midnight.

Bruce's  breathing continued to worsen and Bruce decided that he  did not want to be intubated again. He was put on BiPap which is a machine that helps the patient breath by forcing air through a mask. This machine is similar to what people wear at night  for sleep apnea.  Unfortunately it didn't help & Bruce wanted it removed. He knew that it would result in him dying but he said that was what he wanted. Brannon & I hoped that Bruce could hold on until Tye arrived  but that was not going to happen. He died gasping for breath & in pain at 20:43 while the nurses sat in the nurses station. We couldn't reach Tye to let him know as he was in flight to Fort Myers. I asked if a doctor needed to come & pronounce him dead & the nurses said no that they could do that for the doctor. So officially, even though they never came into the room, Bruce was pronounced dead at 20:45.

I removed Bruce's IV lines,  his chest tubes & his foley catheter. I bathed him & Brannon helped me dress him in his T shirt, underwear & shorts that he wore into the hospital. I pulled the sheet up to his chest & at that time his nurse asked if there was anything we needed. We had already  gathered all of his things & we had already asked about who to call as far as a funeral home & she said she would notify them. We then left to head for the airport to meet Tye. His flight was on time & it was a bittersweet greeting.

The following day we gathered at the funeral home & said one final goodbye to Bruce. My sister, Vicki & her son, Ken, were there with us. Bruce & I had decided a long time ago that we wanted to be cremated & our ashes scattered.  So on November 7th we plan to go out to sea & scatter some of Bruce's ashes. Anyone who wants to come along is invited as I want this to be a celebration of his life. In the spring we will celebrate his life again with family & anyone else that wants to join us as we  scatter more of his ashes in Maxwell near his parents.

Another round - done

It's August already. Another summer lost to our battles. I completed chemo this past week. We had moved my chemo treatments up a week so that I could make one of my weeks' off fall on the week of the Cousins' Reunion at Lake Vermilion in northern Minnesota. We had a great time. All my sisters were there & most of our children & grandchildren. I think a good time was had by all. Unfortunately, my taste buds were affected by chemo so nothing tasted like it should.

I am now waiting for August 7th to arrive. That is when I have my PET scan & my next CA-125. In the mean time Bruce has had to have a pleural effusion (fluid in his right lung) drained. They removed 800cc. He had had a CT scan as he was having shortness of breath & a cough. He was found to also have pneumonia so he is now on an antibiotic and will follow up with his doctor's office Friday. I will get my blood drawn in the morning after my PET scan & then we will go to Dr. Percent's office in the afternoon to find out if cancer cells were found in the pleural fluid. Bruce's CEA continues to rise even though so far no other change had been found on his scans except for the pleural effusion & pneumonia.

Valee my Appaloosa is now with a good family in northern Florida.  It was a tough decision but I can barely get my barn chores done & I am way behind with weeding my gardens.  It's also to humid for me to go riding let along drive my minis. We are behind in trimming the trees. Hopefully we will find someone to get us caught up. I'm going to make a couple of calls tomorrow to see if we can hire someone to get the trees & gardens whipped into shape. It doesn't help that we are now in the rainy season & we are getting behind with the mowing as well.

I saw my primary care doctor, Dr. Ravid, the other day. He asked if I wanted to go on an antidepressant. I said I didn't think I needed to at this time.  My grandsons are the best mood elevators that one can have plus in 4 months I will have a new granddaughter as well. She's due to arrive December 7th...two days after Aiken's 2nd birthday. Today Anita took Aiken for his first barber haircut. Pauline (Anita's mom) & I went along. He behaved really well and now looks like a little boy rather than a toddler. Most of his curls got cut off but looks like his hair is going to still be curly...just shorter curls. It will be interesting if he ends up with hair like his dad (Brannon) & Pops (grandpa Bruce).

Waiting is so hard.

I have started my new chemo regimen. This is my week of no lab & no chemo. Next Monday Bruce & I both have lab drawn. Bruce will see  his doctor later in the week & I have chemo on Wednesday. Since next week will be the start of cycle #2 I will be having my CA 125 checked. Hopefully it will have dropped significantly.  If it doesn't then I may have a change in my chemo regimen again.

Bruce has not had any chemo or radiation as his scans don't show any cancer but his CEA is continuing to increase. He doesn't say much. With both of us having cancer it makes it hard to  plan anything. At least it's nice not having to think about working but now I have no income coming in. I have applied for social security disability which could take 3-6 months. We do have money saved & will start tapping into it if necessary. I can no longer just buy whatever I want.

 I also gave one of my horses up for adoption. Valee is a beautiful appaloosa that I got about 2 years ago to ride. She wasn't getting exercised & I couldn't see that changing anytime soon. I gave her to the Ritz Horserescue, who promise to find her a good forever home. I still have my 3 minis whom I can drive.  I have had them since they each were 6 months old so I am not ready to part with them yet. They & my two grandsons as well as another grandchild due in November give us a good reason to keep fighting.

Things have changed

     Well, things have not been going in our favor. Bruce is doing well but his cancer antigen,CEA, has been climbing since the end of December  but his doctor has been unable to locate the cancer on Bruce's scans and since Dr. Percent  doesn't no where the recurrence is, it can't be treated...so we wait.

     My cancer antigen (CA 125)  on the other hand had been normal until March 30. I was working in Iowa on April 2 when I found out the results. It was really a bummer being in a hotel room alone when I read my results. What was even worse has having to go to work that night & two more nights before getting to go home. I decided then & there that I was done. I am having problems with short term memory loss & trying to work 12 hour nights & possibly not being able to sleep during the day only made it even harder to concentrate on not forgetting something plus I knew I wouldn't be able to handle chemotherapy & working. I know others do but traveling & working long hours just wouldn't have worked.

     I saw Dr. Orr on the 6th, had a PET scan on the 16th, saw Dr. Orr again on the 17th and started chemotherapy on the 22nd.  Obviously, my PET scan was abnormal. Dr. Orr didn't feel that surgery was an option...nodules were small & could be difficult to find laproscopically and an open procedure
(surgery)would delay starting chemo by 28 days. I am also right on the border of my relapse being due to my cancer being resistant to Carboplatin (one of my previous chemo drugs). Apparently if you relapse within 6 months of finishing chemotherapy with Taxol & Carboplatin your Ovarian cancer is considered resistant to Carboplatin. I relapsed at 7 months. If I would have relapsed at 9 months then my cancer would have been considered sensitive to Carboplatin & if I had relapsed at 3 months it would have been considered refractory to Carboplatin. So what that means is that I am back on Taxol & Carboplatin but am also on Avastin which is an even more scary drug then Taxol & Carboplatin. It has a lot more potentially dangerous side effects. I will be on cycles of 3 weeks...meaning each cycle is 3 weeks long with 1 week off between cycles. I will receive Taxol & Carboplatin each of the 3 weeks & will receive Avastin every other week. This coming Wednesday will be the 3rd week of Cycle 1 & I will receive all three drugs. So far no problems. I have lab drawn every Monday & chemo is every Wednesday. My lab varies.  I will be getting a repeat CA 125 & extensive lab every 4 weeks. For the other labs in each cycle I get a complete blood count & a basic metabolic panel which checks my blood sugar, electrolytes & kidney function.

     If I don't have a significant  drop in my CA 125 which is 83.8 (0.0-34.0 is normal) then we will be changing my chemo drugs even more. My next CA 125 is May 18th and hopefully won't have anything else to write about until then.

Once again I am waiting for the results of my CA 125(cancer antigen). I also see Dr. Orr next week. So far so good for me. I wish I could say the same for Bruce. His cancer antigen is going up. It is now above what it was when he was diagnosed. He has been scoped from both ends with no signs of tumor. He has had a PET scan that is showed a couple of low level signals in the abdomen. Today he will have a CT scan of the abdomen & pelvis. It's frustrating knowing that there must be something somewhere but not finding anything. Hopefully it won't take too long to get the results. The waiting is what is so hard.

He is feeling good & maintaining his weight. He does have to watch what he eats & how much but is doing a lot better then he initially was after his surgery.

We both are getting other things taken care of...going to the dentist. We both have had problems that we have put off...I got my crown glued back on & a cracked tooth fixed. Bruce will be getting his implant fixed. I also had a hearing test & have a 35% hearing loss in my left ear which could be from the chemo. I will probably get a hearing aid. I am also going to have a sleep study. I probably have sleep apnea & think I would feel a lot better if I could a good night's sleep every night.

Our vacation was great. I think we all had a great time. There was a little snow. Tye, Brannon, Anita & Robbie went tubing while Bruce, Aiken & I watched. The 3 of us also did a little exploring. With Aiken there is no sitting around. He just has to be moving all the time.

Last but not least I have decided to retire in June. I had hoped to stick it out a little longer but I am burned out. I am working a 4 nights in Fort Madison, IA right now & will probably work another 4 in May & then I think I'm done...that could change but I doubt it.

Bruce's CT results.

Bruce's CT of the brain was normal. There is no explanation for the elevated CEA. It's now a wait & see. Bruce will have repeat blood work (including a CEA) on  March 26th & CT of chest, abdomen & pelvis on April 2nd. Time is passing quickly & we both feel pretty good. We had a great time in Key West with my sisters, Julee, Michele, Vicki & Cherie, as well as cousin Bob & brother-in-law Bob. We missed Denise & Jim but hopefully we will all be able to get together this summer. In a week Bruce & I along with Tye, Brannon, Anita, Robbie & Aiken will be vacationing in Williamsburg, Virginia. Robbie is hoping for snow to play in...for a day & then the rest of us are all hoping it will warm up. No matter what I'm sure we will all have a great time.

PET scan results

Bruce had his PET scan. He had two spots on it. One at about the scar in the esophagus from surgery & the other was in his colon area. He had an EGD today...scope of his esophagus, stomach & duodenum. Also ultrasound of the same area. It was normal as was the colonoscopy he had on Friday. So today was also a waiting game on his blood work. His anemia is improved but still didn't have his iron studies, comprehensive metabolic panel & most importantly his CEA (cancer antigen). Sent Dr. Percent a text about the EGD & colonoscopy & asked if he had results of CEA. He hadn't seen them as he only works 1/2 days on Mondays but did get them to us. Unfortunately Bruce's CEA is elevated. It was 7.4 which was elevated & is know 8.2. Dr. Percent said that the only place we haven't checked is Bruce's brain so tomorrow Bruce will be having a CT of the brain. We were planning on going to Key West on Saturday for a week's vacation with my sisters & my cousin Bob who was diagnosed with lung cancer.Hopefully we will still be able to go. Will definitely depend on what the CT shows & what Dr. Percent thinks we need to do next. If I feel like it I will update this blog tomorrow when we know the results of the CT. As always, have cried a bit & tonight I also had a couple of drinks. Now I'm going to bed.

Bruce's CEA results

Well, Bruce's follow-up didn't go as well as mine. His CEA which is a cancer antigen came back elevated. It was 7.2, normal is 0-6.1. It's not up much but was 3.3 when last checked so is concerning. The nurse practicioner that saw Bruce said 'we' would just recheck it in 1 month to see how it was trending. WE didn't like that approach so discussed it with Bob, our brother-in-law, who is also an oncologist in Des Moines, IA & he felt that Bruce should have a repeat PET scan & an upper endoscopy. We had already discussed Bruce getting a Colonoscopy with the nurse practicioner who is going to refer Bruce to Dr. Joseph who did Bruce's jejunum tube placement. We talked with Dr. Percent & after some discussion (including Dr. Percent talking with Bob) Bruce had a PET  scan done on Friday. Hopefully we will get the results tomorrow. As always waiting is very hard & as always its hard to know what is going through Bruce's head. I'm doing okay now...but that's after 2 mornings of crying while doing barn chores. It's hard not to when I get to talk to Bob who is so blunt about our survival percentages based on the stage of our cancers when they were diagnosed. I just hope we know where things stand before I fly to Iowa Wednesday for one week.