Bruce is home.

Well, Bruce didn't get home as quickly as we thought. Dr. Goldin was being cautious. Thursday he started clear liquids & Friday he was started on a mechanical soft diet. A dietician also came & gave us information on what he can eat & what he shouldn't eat. Now today  he finally got to come home. It was very confusing...what the dietician told Bruce he should be eating & what he received by the hospital to eat were to different things. She told him not to eat tomatoes in any form & what did he get for supper Friday..chicken parmesan with tomato sauce over pasta. His first meal that day at noon was a hamburger. Today for lunch he had an open face hot turkey sandwich with tomato soup. Every meal went down without a problem.

Bruce's surgery is called an Ivor-Lewis Esophagectomy. You should google it & see what was actually done to Bruce. It is quite the surgery. Afterwards, he had chest xrays done & it was very difficult to tell what was going on in his chest. Also before he could eat Dr. Goldin had an upper GI done. That is where they use a special xray machine called a C-arm & it allowed us (me with the techs & radiologist) to see live xray views while Bruce was swallowing gastrografin (a liquid that shows up on xray film or in computer xray imaging). It was quite difficult to figure out what was going on but at least we could see that the fluid went done without any problems...no leaks. Bruce was then allowed to start on a clear liquid diet & then the mechanical soft diet.

This morning Dr. Goldin said Bruce could go home & he is to follow up in 1- 1 1/2 weeks. So we found out that he could leave around 9 AM & we didn't get out until 2:30 PM...but we are now home. Bruce tried sleeping in our bed but is now out in the family room with me. He is trying to sleep in his recliner. This is where I am going to stop for tonight so he can sleep except I have one more frustration to mention.

Last time I wrote I mentioned that my CA-125 wasn't done. Well, it still isn't done. I got a letter from my doctor in the mail. Apparently the lab didn't run it(I had a tech that I had never had before & she apparently didn't understand the orders & now I have to schedule an appointment & go in to have my blood drawn again so they can do the test.

A very busy week.

Today I had a routine visit with my gynecologic oncologist. I had a PET scan & lab work done on Monday. My PET scan & physical exam were normal. My lab is basically normal...I'm a little anemic but that should improve with time and the CA 125 which is the cancer antigen or tumor marker for ovarian cancer was not yet available but hopefully will be normal...should be. Dr. Orr offered me a prescription for iron pills but I have decided to pass on those for the time being. My next follow up appointment is not for 3 months, yeah. This is all a big relief even though I still don't know the actual results of the CA 125. I feel so much better knowing that the PET scan was normal. Now if Bruce can just get through a couple more days.

Bruce had his surgery to remove the cancerous area of his esophagus done last Thursday. The surgery took over 5 1/2 hours. Bruce has an incision below his right axilla (arm pit) & had 2 chest tubes in his right chest and an incision in his mid abdomen just above his belly button to his chest. He also has a nasal gastric(NG) tube that goes up his right nostril & down into his stomach. It has suture material (thread) wrapped around it & then a stitch goes through his nose so the tube will stay in place.  The tube initially was hooked up to suction to keep his stomach empty but it is now disconnected to see if it is needed any more...so far so good. He had 3 IVs (intravenous lines), one in each arm & one in his neck. The chest tubes were due to his lung being deflated during surgery as Dr. Goldin had to be able to get to the cancerous area of the esophagus and that is why Bruce had the incision under his right axilla. The chest tubes were removed yesterday. Bruce still has the NG tube in his nose but hopefully it will be removed tomorrow. The IVs in his arms have also been removed. Everyone keeps remarking how well Bruce is doing. He had a PCA pump to give himself pain medication & is off that. He is now taking the pain medicine through the IV in his neck or through his feeding tube which is below his belly button & goes into his jejunum which is part of the small bowel. Bruce didn't care for the pain medication that was being given in the IV so he is going to try going with just the crushed pain pills given through his feeding tube. Dr. Goldin used part of Bruce's stomach to replace the part of the esophagus that was removed. I  still don't quite understand how all that was done as far as the surgery but plan to ask Dr. Goldin tomorrow if I can get there early enough to catch him. Hopefully Bruce will be going home tomorrow. Well got to get to bed if I'm going to get there early enough to catch Dr. Goldin.

Pre-op day

Today started out bad. Went out to feed the horses & turn them out...and as the garage door went up I had two horses staring at me from the center of the barn. Once again I had a breakout. I apparently didn't get their stall gate fully locked last night. For some reason only Princess & Bob got out. One of them had managed to push the gate into the large fan that sits about 1 foot in front of the gate at night to blow air into their stall and then pushed the fan just far enough for them to get out.  It apparently was a squeeze through that Bruce (my 3rd miniature horse) wasn't willing to go through. I think this happened sometime after 4am as that is when the fans shut off.

The horses had managed to tip over their feed box & then punch a hole in the side of the plastic box which caused the lid  to come off spilling their feed. At some time they also popped the lid off of Valee's feed box & also helped themselves to hay. It doesn't appear that they ate much feed but did enjoy some of Valee's hay. I don't think they were out very long but just in case they got put in their muzzles & turned out without getting their usual morning feed with some chopped apple.

Today was also pre-op day.We had to be at Fawcett Memorial Hospital at 10:15 to learn what Bruce had to do before Thursday & what to expect that day. We learned that he is the first one on the schedule & that we have to be there at 5:30 in the morning...ugh. Surgery will take about 4 1/2 hours...to start at 7 or 7:30...ugh again. I wish I could be like Bruce..says he's not gonna worry about what might happen & doesn't plan on losing any sleep the next 2 nights but he did get to bed a little late tonight as he had to shower.

He's got to scrub himself down with a special antibacterial soap tonight, tomorrow morning & night as well as Thursday morning. I have to scrub his back for him. We also had to change the sheets on the bed tonight & he is to use a clean towel each time he showers. At least we don't have to change the sheets tomorrow.

I was planning on doing 3 loads of laundry today just not a load of sheets. I was planning to change them just before Bruce came home. Now I still have one load that was to be done today & will also probably do a load of towels tomorrow night. We still have papers to get completed tomorrow as we are adding my name to some financial papers that used to be just in Bruce's name. We then have to take them to the bank to get gold medallion signatures on them & get them in the mail. Hopefully we will be able to get this done. Well, got to stop now as I need to get to bed if I'm gonna get at least 7 hours of sleep.

Feeling good :-)

Have had a great day. Started with feeding the horses & turning them out. We then went for a walk...made it a mile today. When we got back I cleaned the barn & Bruce started mowing. Next I gave Zeke, our Welsh terrier, a much needed bath & hair cut. Grooming him takes about 2 1/2 hrs. I am not any more tired then I would be normally...sooo life IS getting back to normal...at least for now. Next big project for me will be giving the 4 horses bathes & shaves. My plan is to tackle one horse a day instead of 2 a day as I would normally do them. Depending on how I feel I may do the girls on the same day as Valee, my Appaloosa, doesn't need much when it comes to grooming (a few wild hairs here & there) & they have all already had their manes & tails trimmed. Tomorrow should be another good day.

Almost forgot...we have a surgery date for Bruce...this coming Thursday.

Getting our ducks in a row.

Had a blood transfusion Tuesday & am doing better but would have been nicer to get 2 units of blood rather than just one but that's the way it goes. Today we went to see our attorney & now we both have living wills, designation of health care surrogates & durable power of attorneys, We are also getting trusts done.

Bruce has been cleared by the cardiologist so now all we need is a surgery date. I got back in the pool tonight & swam some laps...not much but a start. Tomorrow morning we are going for a walk. I told Bruce even though it may only be a few days before he has surgery, it's still worth starting to get conditioned. Every little bit will help his recovery. We are hoping to hear tomorrow when surgery will be.

Hopefully today is my last day of chemotherapy

I ended up taking a Lorazapam (Ativan) & was able to get some sleep. I was right on about my hemoglobin(Hgb)...it was 8.2 but there was nothing said about a transfusion...just that I was cleared to proceed with chemo even though my white blood cells(WBCs) & Platelets were low. I didn't push the issue about the low Hgb while getting my chemo & I should have. I waited until I got home & unfortunantly Dr. Orr's new nurse doesn't seem to really know what to do. I called her initially to discuss when I'm to have a PET scan...as by what I have received I was to have one on the 19th but when I called to see what time it was to be there was not one ordered.  She had to talk to another doctor's nurse to see when it should be done & they were saying not for 3 weeks after chemo & she didn't know why it had been set up for the Sep. 19th. She was going to check that out more but before she tried to say goodbye I asked about the low Hgb & told her my concerns about not having a transfusion ordered. She tried to tell me (an ER doc) how dangerous transfusions can be. It was all I could do to try & keep myself controlled (which I will admit I wasn't doing very well). She now knows I'm an ER doc and that I don't feel the transfusion dangers outweight my need for blood.

I know she doesn't know what all is happening right now with both Bruce & me, either, but hopefully everyone understands now. I will be getting a transfusion tomorrow...I may be there all afternoon but that's better then going without. I had told the person that does the scheduling that if they weren't able to schedule it sometime in the next couple days then I would just wait until after Bruce's surgery as they were trying to schedule the transfusion for next week or this Thursday (we have attorney appt Thursday for signing advanced directives, etc & wills...don't want to postpone that either. There is no way I am not going to be at the hospital with Bruce when he has his surgery & the surgery could be as soon as the end of this week or sometime next week. We will know after he has his treadmill stress test tomorrow. He had his echocardiogram today which the cardiologist has probably already read as his tech said he would be reading it before the end of the day. Hopefully Bruce will get the "all clear" & we'll can get the surgical date scheduled.

I'm sure I will be taking more Lorazapam tonight as my legs are killing me now & of course I'm wide awake. I got started on my Oil Protein Diet...not bad at all but I didn't pick a very good combo of lettuce greens...some are pretty bitter tasting. We'll see how the next few days go.

Vicki will be going with me tomorrow since I get my blood drawn at 11:00 & then the blood has to be cross matched & could take quite awhile. I'm thinking we could possibly be there most of the afternoon so I will be taking my lunch with me & Vicki can either have a box lunch if we are in the chemo area or we'll get her something somewhere. I better go get my salad packed & get the laundry folded. Brannon has the day off so he is coming over to get the horses out & barn cleaned for us...Bruce's appointment is at 08:45 & I don't think I will have the energy to get the barn cleaned before I need to get ready for my appointment at 11:00. We got hung up in traffic today & were 10 minutes late...can't be late tomorrow after all the fuss I made today to get this transfusion scheduled when it was good for us.

Another sleepless night

 I seem to be getting more lightheaded then I have been & am having a lot of muscle pain in my legs. I guessing my blood counts must be getting low.  I will probably need another blood transfusion. Last week my hemoglobin was 9.1 & the week before it was 9.0. Normal is 11.1-15.9.  I'm thinking I may be down in the 8.1-8.6 range. I got as low as 8.2 before being transfused in July. Lab Corp is being slower then ever in posting results on the Internet. They still haven't posted my lab from Aug 28th let alone lab from Sep. 4th but I will get my results Monday when I go in for my last chemo treatment. I went to bed about 11:30 but gave up on sleeping in bed about 1 AM. I'm watching TV as I am wide awake. I was having trouble breathing laying in bed...even though I had 3 pillows under my head & upper back. Now I'm in my recliner with 1 pillow & sitting on a heating pad to keep the leg pain away. I can't really blame not sleeping on the cancer. I worked nights for 20+ yrs & was back to working nights after working days for 8+ months in a VA Clinic down here. I went to work for a company that was flying me back to Iowa once a month. I would work about seven 12 hrs shifts then fly home. It was great but unfortunately not possible when getting chemo once a week. At this point I don't know when I will be going back to work. 

Bruce & I are going to start Dr. Budwig's diet tomorrow.  I don't know how much of it Bruce will actually follow but he's at least willing to try it.

Bruce see cardiologist & the Oil-Protein Diet

Today Bruce had his appointment with Dr. Hotchkiss, cardiologist. Next Monday Bruce will be having an echocardiogram & Tuesday a treadmill stress test in order for Dr. Hotchkiss to determine if Bruce is okay for surgery. If cleared, surgery will hopefully be scheduled within a week.  Next Monday will also be hopefully my last chemo treatment. My sister, Vicki, will be taking me since my appt. is at 11 AM & will take 2 hours. It would be hard to get from Fort Myers to Port Charlotte in 1/2 hour. Bruce's appt. is at 1:30 PM.  Dr. Hotchkiss didn't think Bruce would not be a surgical candidate but since he hasn't had his heart checked in 4 yrs it's best to get the echo & stress test. We were going to go out for lunch after chemo to celebrate my being done with chemo but I guess we will do supper instead. It will probably be my last (real) supper.

 I have decided to try following the Oil-Protein Diet by Dr. Johanna Budwig. It is basically a vegetarian whole foods...no refined, processed or canned foods diet. This diet is for the unwell & diabetics but is especially recommended in preparation for physical exertion (ie: for athletes) as Dr. Budwig would say. I don't think I will be able to convince Bruce to follow the diet (at least not initially) but he may be willing to try parts of it. Today while I am babysitting my grandson, Aiken, I'm going to start on my grocery list so tomorrow I can head to Earth Origins an organic foods store. I will probably be using my juicer as well as blender a lot in the future. May even have to think about investing in a pressure cooker but will see first how I do with the diet.

Today was a busy day

We have both been very lucky. Neither of us has completely lost our hair. The thickness of my hair has been thinned by about 2/3 but no bad bare areas. I looked at wigs for several weeks but decided they just weren’t for me. Bruce has lost about ½ of his hair but again no obvious bare spots & no plans for a wig. Bruce is also gaining weight…slowly but steadily. He had at least a 20 lb. weight loss as well. He was below 140 at one time & is now back up to 151 lbs. hopefully he will continue to gain at least until surgery & then maintain with his weight with J-tube feedings until he is able to eat again.

Today is Tuesday, September 02, 2014. We saw Dr. Percent at 10:45. He was running a little behind but the 45 minute wait was worth it. We got the news we were hoping for. The chemo/radiation did what it was supposed to. Bruce’s PET/CT scans were great…the CT shows that the tumor & lymph nodes as smaller. The PET scan showed no areas of hyperplasia…the tumor & lymph nodes essentially are dead & no new lesions. Friday he will see Dr. Hotchkiss, the cardiologist & hopefully surgery next week.

Now we got to make a quick trip home so I can change clothes & get my lidocaine crème placed over my port so it won’t hurt when they poke it with a large needle for the chemo. My appointment is at 1:30 & will take about 2 hours. Today we had to drive from our country home outside of Punta Gorda, to Florida Cancer Specialists in Port Charlotte (about a 40 minute drive),then back home. Next it’s off to Fort Myers to Lee Memorial Health System’s Regional Cancer Center (about a 50 minute drive). We got there right on time at 1:25pm for my 1:30 appointment and I was done by 3:30. We decided to celebrate with an early dinner at Phil’s 41 Restaurant. We both had great meals. Now it’s 10:24 pm. Bruce & Zeke (our dog) are both in bed asleep .I got the horses (3 minis & 1appaloosa) in at 8 pm .I have just taken an Ativan (Lorazapam) so hopefully I will get to sleep soon but first got to go feed our 2 sugar gliders, hopefully they are now up & ready for “breakfast”, They are nocturnal marsupials originally from Australia. Phil & Pattie were born in the USA. We are fortunate that they have never had any babies. Babies usually come 2 at a time. They are born the size of a grain of rice & crawl up to their mother’s pouch.

Tomorrow hopefully we will be able to work on getting our information in order for our wills.  We need to go in & sign our Durable Power of Attorneys & Living wills. We have those drafts completed. We also need to call the cardiologist & make sure they got Bruce’s information from Iowa. There is always something to do. I’m hoping soon to have the energy to get my gardens weeded. Unfortunately they have not been high on the priority list & it’s been too hot. Yesterday I did finally take my 3 minis on a drive. I’m hoping to be driving them 3 times a week soon as they have gotten so fat but I have a lot of other things on my list as well…riding Valee our appaloosa, giving the Zeke a bath & haircut as well as bathing all 4 horses & clipping them. I can’t wait for cooler weather.  I just tell myself I can only take it one day at a time. Soon I will also have to add returning to work to the list which means I also have certifications to get updated before I can work. Well, I am finally feeling a little sleepy so I better quit. It's now 4:35 AM in Punta Gorda, FL.