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.

Time seems to pass quickly when you constantly go to the doctor

Bruce finished radiation on Tuesday, July 22^nd…so his last chemo was July 17^th. He is eating better & gaining a little weight. I on the other hand have almost gained back all the weight I lost (which was 20 lbs.)  I was hoping I wouldn’t gain any weight back but I seem to crave salty food & have had no problems with vomiting.  I did require a blood transfusion on July 29^th as my red blood cell counts have steadily dropped. Bruce has an appointment to see Dr. Percent on July 30^th.  We hope that at that appointment we will find out the name of the surgeon Bruce will be seeing and actually get set up with an appointment to see the surgeon.

It’s now August 26^th; Bruce has now seen Dr. Goldin, who will be the surgeon. He has seen a 3rd Gastroenterologist, Dr. Joseph, whom he initially saw on June 24^th & who placed a jejunostomy tube (J-tube) on June 27^th (which so far Bruce has not needed to use). Bruce is to have another esophageal ultrasound as well as a repeat PET scan on August 28th before having the surgery.  He will also be seeing Dr. Hotchkiss, a cardiologist on Sep. 5^th.  Bruce had a cryoablation done in about 2010 for Atrial Fibrillation & needs to be medically cleared by a cardiologist before surgery. The surgery will take around 4 ½ hours.

Where we are at in our treatments at this time

It’s been a while since I’ve written anything. Today (Monday, July 14, 2014) was the start of Cycle 4 for me. Bruce’s EUS revealed involvement of at least two lymph nodes & the tumor extends into his stomach. He has been receiving chemotherapy & radiation. I get chemo every Monday & he gets his every Thursday…that way one of us is usually feeling well enough to do the driving. Bruce gets radiation every day during the week. Their machine was down for two days so he had to make up one of the treatments on Saturday. They had more trouble today so he was there for over 1 hours waiting but finally got his radiation. He is almost done with his radiation & chemo. He is doing a countdown & has 5 radiation & 1 chemo treatment left as long as the radiation treatments don’t get postponed for any reason. He is also receiving Taxol & Carboplatin but different doses.

I just had the first treatment for Cycle 4 today that means 2 more chemos in this cycle(2 more weeks) then 2 more cycles (6 more weeks). So I am now in the second half of my treatment. If Bruce’s radiation continues as scheduled he will be done next week…then he is to have 7 weeks rest/healing. He also is to have a PET scan when done. He will be referred to a surgeon for removal of the diseased area of his esophagus with part of his stomach to become part of his esophagus. His surgery will hopefully take place the week I have my last chemotherapy (or sooner). We thought the surgery would have to be done in Tampa but it may actually be able to be done locally. We’ll find out when we see Dr. Percent in 2 weeks.

If all goes as planned I may be able to go back to work in October. I could work now if it was possible but kind of hard to have chemo on Monday, fly to Iowa, and work 5 nights (12 hour shifts) then fly home for more chemo. I also seem to be getting weaker with each chemo…doesn’t help that my blood counts are low. There are days where I can barely get the barn chores done as I get very short of breath with any exertion.  I don’t think I will even consider working until Bruce’s surgery is done. I guess that’s why everyone needs to have emergency savings accounts and I’m glad we have ours…just didn’t want to end up spending it this way.