TUESDAY

TUESDAY - I just got this photo of Dawn [my Florence Nightengale and Mother Teresa all-in-one] taken on the 19th at our friends cottage an hour north on Lake Geneva. We had a delightful picnic there. I was still a little tentative since I'd just gotten out of the hospital 6 days previous. 

I just want you guys to know that I am erect and doing fairly well now. 

Today my friend Bill took me to get Fred changed out. Otherwise today was totally uneventful: resting some and working some on Strongwood client and on Sun City business. 

Dawn will be home in a few minutes and then off to her tap class. 

Off to two doctor appointments tomorrow. Keep praying! I feel God's hand on me. Bob

MONDAY

MONDAY - I thought I mention 4 things today. 

First, things are going just the same. And, that's good. 

Second, here's a photo of my midline. That is what the IV [Fred] gets connected to by

about a 6' tube. Fred is in a bag about the size of a fanny pack with an electronic dispenser and the IV bag of antibiotic. Fred goes off at 4:30pm and 4:30am and has a very slow drip the rest of the time. If I am on the move, I coil up the tubing in the bag. If I am sitting or in bed, I just lay Fred on a table close by. Does the tubing get caught in the wheels of my office chair? Yeah. Has Dawn tripped over it? Yep. But no harm done so far. 

Third, I forgot to tell you that I got a shower a few days ago. OK, personal hygiene is a bit different and has been since March. Right now, Dawn has to wrap my midline [from armpit to elbow] in plastic wrap in order for me to get wet in the shower. Taking a shower is a two person operation for sure. I am still not totally stable although I can walk fine....just slow. And, because I am not really generating much/any body odor from exercise, then my personal offensiveness seems to be minimal. Hey, I LOVE my morning hot shower every day. It's just different now. 

Fourth, the flowers are from our yard except the gladiolas are from my mother and father in law's yard. The snow balls are from our yard too but they are about gone. To say Dawn is nuts about Bells of Ireland is an understatement but they are lovely in a vase. 

SATURDAY

SATURDAY - There were two big events today. First, I went to see my hairstylist this afternoon. Lest you envision me with anything vaguely similar to what I had at Christmas time, I believe that I could best now describe what covering the area above my ears and my forehead best as "scraggly fuzz." 

The only exception is my eyebrows and the area right around my ears which is growing quite well. Go figure. Denise, my stylist/beautician/hair cutter says that is just how it goes sometimes. But I did need to get it all kind of evened out. She says it's gonna be quite a while before I see anything like a head of hair again. 

The second thing that happened today was that we went to the beauty shop, the laundry and the market [did not get out at the last two] with the top down on the car. It was just such a fabulous convertible car day. Wow, it was lovely and felt so great. 

I have not  driven a car since late February. I am kind of looking forward to it again; but I'm lining up all the rides for my doctor appointments for every day next week. Maybe I'll see how I feel after I part company with Fred on Friday. 

I hope your weekend is a great one!
Bob

THURSDAY & FRIDAY

THURSDAY - Today was a visit with my infection specialist, Dr. Tiballi. Remember, I go every day to get Fred refilled by Adrienne, the RN in charge of the infusion center. He said that my blood tests looked great and that I seemed to be in good shape.

We will discontinue all the antibiotics which I take by mouth but will keep Fred for another week until next Friday. Well, at least I don't have to get up at midnight and 6am anymore. But, Fred is one of those things that you get used to but would rather not deal with at all.

I think the main reason is that I did have noticeable fluid in my sinus cavities in the last CT scan and he wants to make sure that is cleared up so we'll continue Fred for the full 3 week regimen. He told me last week that they continued to do cultures from the Broncoscopy but never figured out what the infection was that put me in the hospital for 25 days.

Dr. Tiballi confirmed the fact that that all the antibiotics were part of the cause for my lack of energy. So YIPPEE, maybe getting off them will add a bit more get-up-and-go to my yippee ki yah.

I don't go back to see Dr. Singh [oncologist] until next Friday. So flip a coin there about whether I get another round of chemo sooner, later or not planned. I'm ready for whatever they decide. I've had 3 so far. That's chemo IV's about 15 times.

So I covet your prayers for some progress and strength over the next few weeks and that I am mentally and physically prepared for whatever Dr. Singh feels is best for me. God has given me the endurance and the wonderful wife to get this far. Love to you all, Bob

FRIDAY - This is who I have a date with 5 days a week: Adrienne. She's an absolute sweetheart and is the RN in charge of the infusion center who puts a new antibiotic bag in Fred. But, of course, on Friday I get a much larger and heavier bag so it lasts for the weekend. Today is the last day for taking the antibiotics that are in pill form only.

We went to friends for dinner and it was just a delicious mixed grill. While my strength is crummy, at least my appetite is decent.

Tomorrow we'll run a few errands and I am going to get my hair sort of evened out. Is it growing back? Nah, just barely. But Dawn thought it was looking a bit raggy. I guess she's right although I have taken to wearing a ballcap most of the time when I'm not home. Good night to you all. Bob

MONDAY

MONDAY - Progress is continuing. We talked to Adrene today about the oxygen and got some great tips on how to manage it and improve my lung capacity. I have been going more and more without O2 all the time. Just working at my desk, if I remember to breath, I have 92 to 94 consistently.  

I had another 'outing' today. We went to the Eddie Bauer outlet and I picked up a new pair of jeans which I needed and spotted a shirt and Tshirt which grabbed my fancy. The manager came over right away when we walked in and said she'd missed me and asked where I had been. So I got her up to date on the last 6 months. We are frequently shoppers there and love the store and the fact that's it's an outlet store with bargains. 

Off to get Fred recharged tomorrow and that's all I have to do besides bill some clients and some other biz stuff. My day is usually up and down ---- at my desk and then laying down for a bit. Everybody tells me, don't push it. No worries there since I don't have a lot of energy/stamina. 

Hugs to all of you,
Bob

Sunday

SUNDAY - Wow, what a good/better day. We've been checking oxygen a lot and I've been at least 90 to 93 almost all of the time. I am careful but this is really a good sign that I can ditch the tubing sometime soon. I need to check with one of my docs. 

Energy is the biggie. We actually went to some friends for a delightful picnic outside tonight and I did fine...checked O2 numerous times and never needed it. Hooray. 

Off to get a new bag of antibiotics in the morning. 
Sleep tight. I will even though I have to be up at midnight and 6am to take antibotics. 
Love to you all,
Bob

SATURDAY

SATURDAY - We seem to be figuring some things out about how to build up my lungs; anyway, it is getting better. "It" is my O2. Ideally it would be like 98 or 99. You probably are. For sure it needs to be 92 or better. But, I now seem to be running about 90 to 92 a lot of the time today. And, I've had several laps around the cul de sac without dragging my bottle and come back to about 86 but then after resting a few minutes it comes up to 90 w/o air. Anyway, I am seeing some progress where there has been very little this past week.

The other measurement that we diligently track is temp. And, I'm good there. A temp would be a red flag for the return of the infection. We are quite confident that the drugs I'm on now are really doing the job so I'm not worried. 

Love you all and appreciate your continued prayers for us. 
Bob

THURSDAY

THURSDAY -  It was a kind of usual day just dragging my oxygen hose around with Fred around my neck....unless I am parked at my desk or in the bedroom. Except I keep getting one or the other tangled in my office chair wheels. What a mess I've made a couple times. 

We had a meeting today with Dr. Tiballi this afternoon. He says that I'm doing very well and will be done with the regimen of antibiotics at the end of next week. That's great. Somehow we got off into about 10-15 minutes of geek talk as he said that he owned a Palm Pilot when they first came out and carried it in a bag like my man bag similar to mine. Then the chat went to IBM PC's and Lotus 123 and on and on. Fun. Any of you that old?

The biggest issue I have to deal with is my lungs. I need to work at breathing exercises. It'll come along. Well, getting my energy back too; but I know that will be a longer-term project. 

I did have a lovely  chat this afternoon with my college roommate who has non-Hodgkins lymphoma and going through chemo. Ah, it makes me realize that as we get older there are more unexpected challenges that any of us can face tomorrow morning. 

That's it for today, folks. 
Love you all,
Bob

WEDNESDAY

 WEDNESDAY - That Neice Does It Again. 

Yep another cheery and exceedingly creative care package today from my favorite niece in Spokane. Where does she come up with this stuff? I dunno but they are sure fun. There were 4 different "prescriptions" in today's box.

We made our daily trip to Dr. Triballi's to get Fred refilled. That only takes a few minutes. 

Then across the hall to meet with Dr. Singh. My blood work came back just about the best it's been in a really long time. So that was just terrific news. I am feeling decent ---- even though I still need a bit of O2 and my energy is still slowly making it's way back. 

We did have a serious discussion about chemo. I should be having one more round of consolidation chemotherapy according to the plan first laid out. Yes, all tests have indicated that I am leukemia free; but I want to stay that way. 

The problem is that Dr. Singh believes that if I have another round of chemo  and by chance get another infection like I had for a month ---- and still dealing with to some extent ---- that it could kill me. I tolerate the chemo just fine. But another round could take me down so much [i.e., no immunity to anything] that my body might not be able to fight back again. So far, so good. But the last month has been hard.  It's a sobering thought. 

But I am working now to get my body back to "normal." As in playing tennis normal. Then we'll see what the options are. It's funny to think about my immortality and future; when in reality tomorrow could bring dramatic changes to any of us. When you are young, you don't think about it. But at this time in your life, you do realize that God could allow something completely unexpected to happen. So far, I am quite blessed...partly because I started this journey in very good health. 

Love and blessings,
Bob

TUESDAY

TUESDAY - We settled into somewhat of a routine which will include going to Dr. Tiballi everyday to get Fred recharged. All my doctors are in the same building which is less than 15 minutes away so that's good. 

My biggest frustration today was getting my O2 and Fred tubing [two different ones] caught in the wheels of my office chairs. Yeah, at least 10 times today. The Fred tubing is about 6-7' long so I can put it on a table next to my desk, on my nigthstand or sling him over my shoulder. 

My oxygen generator has 50' of tubing so I can go about any place in the house. But I do have to watch for getting it caught on stuff. Ugh. 

I am felling pretty well as I keep saynig all the time. But as I was telling Sue today, it's all relative..... 

Love you all,
Bob 

MONDAY

MONDAY was one fun day. Not. I slept great last night and feeling pretty good today. But we started with calls to insurance and the infection doctor where we need to get the infusion of one of the  antibiotics twice a day. We wanted to see if we could have home health come and do it. Long story short after about 4 hours: the insurance could  do what we wanted, but it is more practical to use the portable 'Body Guard 323' from Dr. Tiballi. It's about the size of a fanny pack and me and 'Fred' are now in a relationship 24/7 for the next two or three weeks. It maintains a very small drip constantly in order to keep my midline open and then dispenses the drug automatically at 4:30 twice a day. 

Yeah, I can take a shower. It has a shoulder strap to use when I am on the move; otherwise, I can just set it someplace and uncoil the 6' of tubing. I have to go to my doctor's infusion center every morning to get more IV antibiotic and have the battery checked....that only takes about 10 minutes. That's doable. 

Dawn's got all my many meds organized so I think tomorrow we might have a kind of 'normal' day...whatever that means. 

I am feeling pretty good and eating pretty well. So that is good. Plus I can get some work done. 

Guess that's it for tonight. It's your prayers that have gotten me this far and I am so thankful for you all.
Love, Bob

SUNDAY NIGHT

SUNDAY - Home at last! Hooray! I can't tell you the emotions of just getting wheel chaired out the front door of Sherman tonight and feeling and breathing the warm summer air.

This is probably the most complicated discharge I've had from the standpoint of organizing the drugs and appointments. I've got 4 antibiotics and several other drugs to deal with. Tomorrow I'll go for the first outpatient IV on the one antibiotic that is not available as a pill.  We are hopeful to work it out to get it done by home healthcare however, within a day or two. Plus, Walgreens should have the one special order drug in tomorrow morning. Everything takes phones calls, lists, double checking and appointments. But, I am hoping this time we lick the infection and get back to a regular life.

Dawn is taking all yjod week off. What the heck would I do without her? I just can't imagine. She is such an amazing wife.

We have one antibiotic to take every 6 hours so I'll just keep up with the same 6 and 12 routine as in the hospital.

OK, just finished dinner so off to watch this weeks "Next Food Star" episode. Love to you all,
Bob

Thursday - July 9

THURSDAY – July 9

You have not heard directly from me for a while and I am sorry about that.

First, a story – I did come back to Sherman last Thursday night. But, in spite of whining, I could not get on the 5^th floor where all my staff friends are. Actually, that had no rooms. But Dawn did go downstairs --- I was on the 6^th floor ---- and let them know that I was back again and missed them. Then the next day, the Director of all cancer services came to see me and said she’d arranged to have me moved down to room 1201 --- the big room on the 5th floor --- that afternoon. Ha ha. I sure helps to have friends and connections.

I can say that today is the 2^nd full day that I’ve had no temp [which is caused by the infection] and felt much better. But in summary:

·       They still do not yet know what the infection is.

·       The results of my bronchoscopy after 4 days does not indicate any problem but complete analysis will take days/weeks.

·       They are still changing antibiotics but what I have now appears to be working.

·       Still have the slight cough but it is not a major deal.

·       I’ve lost another 10 lbs in the last month which is not really a good thing. Appetite is a struggle.

·       Energy is low. My CBC’s dropped a wee bit today but they won’t do anything.

·       I walked a ½ lap today. That is pretty important. It was not hard.

So, the question is, how long will I be here?  Nobody is even hinting at an answer. My guess is 2 to 7 more days. I have been here 7 days so far this time. Since about the first of March, I have been in the hospital for 64 days. Yes, that is a lot of time, isn’t it? Fortunately, there is an end to all of this.

How am I doing? I want to tell you guys that I am doing fine…mentally. But I have to be honest with you too, the last week has been really hard. I have had to fight moments of not only being physically worn down, but mentally so exhausted with all this. Right, now it’s just not knowing what this infection is ---which means my doctors have to throw darts: combos of antibiotics to see what works.

I want to get home so bad. However, I don’t want to come back to fight this same battle again that I’ve been for the last month. My doctors are all over that.

Bottom line, is that I feel we’re on the right track. I am feeling better. And, am mentally more encouraged tonight. I share this from my heart. I am well aware that depression is something that could jump out and bite me anytime as you might guess. But I am careful and feeling that God is still in control as long as I depend on Him and his angels like Dawn. His timing is not always ours, though is it?

Anyway, I read and cherish every prayer and comment you guys make.

Love,

Bob 

Thursday

THURSDAY

Ho hum. I wish I could say things have changed or I have news. The only minor thing is that Dr. Vento prescribed a new codeine based drug for my very irritating cough. It is persistent and occasional but more of a hack than a cough that is generally triggered when I move about. Go figure. It’s always something.

But here’s what you can specifically pray for: that I begin to get some of my energy back again. I really, really need that. I know that if I don’t ask, that I won’t necessarily receive that gift from my Heavenly Father. But, I also know that everything is on His schedule and not mine.

Love you all,

Bob

Wednesday

WEDNESDAY

Another much the same day. But we did meet with Dr. Singh this afternoon:

• ·        My number continue to go up with Hemoglobin at 8.4 and Platelets up to a rousing 114. All good.
•      My recovery energy-wise from my last stay in Sherman on June 20 continues to be a bit slow although not unexpected since I was so low and in rotten shape.
• ·       I still have a wee bit of an occasional cough. I will get another chest x-ray next Tuesday and see if that is having an effect. I don’t think anyone thinks so, but it’s possible.
• ·       I will not be going next Monday to start Round 3 of chemo. No surprise. We did not think so; and, Dr. Singh says I need to be stronger. We totally agree. So, when? Not sure. Maybe the next week. I will be home at least for one more week. I am not unhappy about being at home anytime. 

I am unhappy not to be moving along and getting through this. But, at the same time, I know my body and I’m not ready for the next round yet.

So, that’s it for today, folks!

Love,

Bob and Dawn