Sunday, January 29, 2006

Day 44 Noah looked out of the arkansas...

In case you might have been wondering, Arkansas is the only state we know of which is mentioned in the Bible (well, sort of). I'm getting close to the half way point before I go for my 100 day check-up at Mayo. Of course, Noah was looking for some dry land. I'm looking for a complete response. I suppose maybe Noah and I do sort of have something in common.

Well, I continue to feel pretty good. My white blood cell count is slightly below normal which makes me somewhat immune suppressed and causes me to be quite a bit germphobic. My red blood cell count is low which means I continue to be anemic which makes my energy level a bit low. I spent my first full week at work last week working half days. There has been no shortage of things to do thank goodness.

I went to see my local oncologist last week. My Mayo Clinic oncologist wanted me to start back on Zometa and begin an inhaled antibiotic. I got a Zometa infusion last week and will start the inhaled antibiotic next week. The antibiotic is supposed to protect me against getting pneumonia. I don't think it is necessary but the doctors insist. Since I almost died with pneumonia five years ago, I am inclined to acquiesce.

Friday, January 20, 2006

Day 35 a Week Later

Time flies! So do I sometimes for that matter. We will be flying back to Rochester around March 19 for my 100 day checkup for two days. That is when I find out whether the high dose chemo did what we hoped it would. I am told the chemo continues to work for 60 days (maybe more) after it is administered. My hair is growing but to give you an idea, I can shave my face with a blade and it will last four or five days. I shaved yesterday and my face feels as smooth right now as it did yesterday - amazing.

We got back home last Thursday. Friday was a day to recover from the trip which covered 900 miles and took about 17 hours to drive. I did call the Cancer Center here to see about what I needed to do but all the nurses took the day off which delayed the call until Tuesday. Saturday through Monday was a three day weekend due to Martin Luther King's birthday. I went to work Tuesday for the first day for about three hours. I rested Wednesday. Actually, I took a ten block walk Wednesday afternoon which wore me out. I took a nap after I got back.

Thursday I went to work for another approximate three hours. And today, more of the same. I feel a little stronger each day. I was told I would be anemic until the end of the month. I am sure that must have something to do with my energy level, mostly the lack thereof. But I won't know for sure what my red blood cell count is until the hematologist here finally contacts the hematologist at Mayo to get an update so I can begin getting tested and treated here. I've waited all week for them to connect. I was told the Mayo hematologist called the one here Wednesday but he was out so Mayo just left a message. The continuing saga - ha.

Friday, January 13, 2006

Day 28 at Home

Well, we finally made it home. Being at home seems to make a big difference in recovery. I don't know if there is a significant difference between home and 900 miles away at the clinic during the first fifteen days or so when stem cells are ingrafting. But, I've been here two days and I seem to feel much better and my appetite seems to have improved.

Postings to this blog page will likely be greatly reduced from now on because I am home and there is less going on therapy wise to keep everyone informed about. However, I may post something every now and then.

There is something I wanted to comment about concerning our stay at the Gift of Life Transplant House. We met many people all of whom were extremely nice to us. We all had at least one thing in common first and foremost, a struggle for life. We met people who were waiting for liver donors so they could have a liver transplant. Others were waiting for multiple organs such as kidney and heart for transplant. Some were back at the clinic who previously had a transplant but were experiencing difficulties. We met several multiple myeloma patients who were back for a second stem cell transplant. We met a couple who was there so the wife could receive a stem cell transplant for amyloid disease which had deposited protein in her heart. Amyloidosis is an extremely rare disease even more rare than myeloma. Of course, everyone who was at the Transplant House had a treatable disease so we didn't meet anyone with an untreatable disease. We will always remember our time at the Transplant House but we are sure glad to be back home!

Tuesday, January 10, 2006

Returning Home

Finally, after more weeks than I care to count, we are going home! We will be in Troy, MO Tomorrow night. We will be in Columbus, MS very late Thursday. I will be at work for an hour or two Tuesday.

My transplant doctor said I look real good. She said I look better than some she sees at the exit visit. That was encouraging. She also said they were required to do electrophoresis testing but they ignore those numbers. She said the only numbers that are significant are the ones they collect when I return for my 100 day check-up end of March. That too was encouraging.

I thank God for all the successes and better than average outcomes I have had during this process. I also thank all those praying for me because God is listening and responding. May God bless you all. I can never repay all the kindnesses which have been shown me and Vinita during the battle with cancer while we were away here at Mayo. But that's not going to stop me from trying every chance I get :)

Monday, January 09, 2006

Diverticulosis and Diverticulitis

If you think this is a gross subject, you might want to skip this post. If you are reading along with me, I assume you are interested and can handle "gross" anatomy as it were.

I did some research on the web and found two very informative sites:

http://digestive.niddk.nih.gov/ddiseases/pubs/diverticulosis/

http://www.mayoclinic.com/health/diverticulitis/DS00070

These two sites have enough information to enable you to diagnose yourself if you have been having chronic pain in your lower left abdomen. Of course, when you go to the doctor, you will get prodded and poked. Then maybe sent to the enema room to get cleaned up before they inspect the inside of your sigmoid colon with a sigmoidscope. They did that to me and said mine looked fine so I suppose what I had was very mild and in order for them to note anything significant, the infection has to be really bad. Or, the doctor had other things on his mind that day - ha.

Next, regardless what Dr. Sigmoid doesn't turn up, you will go for a CT scan. By the way, there is a new medical testing gadget that is sort of like a CT scanner except it makes three dimensional pictures of the colon and intestines. It is called a virtual colonoscophy and has the ability to reveal much more about the intestines than current conventional tests. It is completely non-invasive as far as I know. Maybe after we are all dead and gone it will be the standard procedure available in our community. Anyway, back to the CT scan. It can usually tell them almost anything they want to know about diverticulosis and/or diverticulitis.

In case you may have been wondering what the difference between diverticulosis and diverticulitis is (like I was) you can go to the web sites and/or read on here. First of all, we have to understand that this problem almost exclusively occurs in the sigmoid portion of the colon due to hard stool and the excessive pressure required to pump it out. And apparently it takes 60 years give or take for the disorder to develop into a problem. That is why they recommend you get 25 to 30 grams of fiber EACH DAY (no mean feat let me tell you) to help prevent the problem. Basically you will be munching on fruit and veggies all day to accomplish this goal. I suppose that is why people in Africa and Asia don't have the problem, they munch on fruits and veggies all day. I have found if you skip the TV adds about Metamucil and other fiber supplements which only add a measly 3 grams of fiber at best and move right on to cereals like Fiber One (and a few others) which have about 20 grams of fiber per serving, you will save money and accomplish your goal at the same time without going around all day munching on stuff. Of course if you have developed the munching habit, you could always carry the box of cereal around with you all day. I have found a nice leisurely 45 minutes first thing in the morning with about a cup and a half of cereal in a bowl usually does the trick for the whole day with the added benefit of soft regularity, everything the medical profeddion tells you you need.

But I digress. A diverticulum is a single buldge in the lining of the colon. It looks sort of like a small balloon and is similar to what happens when a bicycle tire gets a hole in it and the inner tube underneath pooches through and makes a small little bubble outside the tire. As you can see, this could be a potentially fatal condition depending on the circumstances. Now if you are quite far along in the disease, you may have several diverticulum which are now referred to as diverticuli because they have progressed into the plural. Therefore, diverticulosis is the state of having diverticuli (or diverticulum as the case might be). Any time you see the ending, "itis," it usually means inflamation and/or swelling. Therefore, diverticulitis is the inflamation of the colon in the area of a diverticulum or several diverticuli usually because they have filled up with bacteria and stuff and become infected. This condition can usually be remedied with several days of antibiotic, bed rest, and a liquid diet (yum!). If the infection is severe, it can result in a tear of the colon which is very serious and requires surgery. If there is a sever infection and the proper attention is not given, this can be a fatal combination.

I was curious, now you know too. Please stay tuned for further developments...

Sunday, January 08, 2006

FREE at Last!

They let me out of the hospital this morning. I was so happy! I was beginning to get concerned I would waste away with extremely minimal physical activity and laying in bed almost all day. It is going to take a few days to get me back up to climbing stairs and going as good as I was before I went in the hospital but thank God I'm out of there. Not that they didn't treat me real nice and help me get better. If you aren't real sick, the confinement begins to get to you. At least it was getting to me.

Of course, another aspect of this is that my CBC numbers are still below normal. Today, red blood cell count was 10.3 (below normal), white blood cell count was 3.5 (bottom of the normal range), and platelets 150 something (bottom of the normal range). I am told it will take a month or two for my numbers to come up into the normal range. Right now, I am very vulnerable to infections. I will continue to be at risk for pneumonia and other infections. Therefore, I will be on antibiotics for at least a year.

Today it is partly sunny and low 30's right now. Not too bad a day compared with the overcast sky we had for so long.

I have to go back to the hospital this afternoon to pick up my meds then it is once a day for blood work and a checkup for the next few days.

Stay tuned for future developments...

Saturday, January 07, 2006

Sunshine

Rochester set a new record yesterday with 16 consecutive days without sun - completely overcast sky. I am proud to announce that record came to a screeching halt today with partly cloudy skies and sunshine.

Well, it is the weekend in the hospital. They decided to take me off the saline drip but I have to keep the IV so they can pump IV antibiotics in me. I think eventually they are going to try to get me on all oral meds and eliminate the IV thank goodness. But that probably will not happen until Monday at the earliest.

Not much going on except TV, puzzles, and periodic walks up and down the hall.

More later...

Friday, January 06, 2006

On The Mend

I don't have much time so this will have to be short. They are now letting me have jello, broth, clear liquid, etc. I'm not sore like I was so maybe the diverticulitus (sp?) is gone. They will do another CT scan maybe Monday. I expect I will be in the hospital through the weekend and maybe a couple days next week too. I am getting better and will be much happy to depart the hospital but am glad I am here getting treated rather than out there continuing with an infection my body is ill equipped to fight.

In case you may have heard I had the flu several weeks back, that is not correct. After the chemo kicked in, I FELT like I had the flu times ten.

Later... they removed the Hickman catheter about noon today. It was infected so it had to go. I'm now equipped with a regular IV in my arm. I have also graduated to a "full" liquid diet as opposed to a "clear" liquid diet. Getting the old digestive machine going again is another nice challenge. I watch Emeral Live just to torment myself - ha.

Thursday, January 05, 2006

Pictures of Shelby Woodhead

NOTE: if you are having difficulty finding the post with links to ShutterFly.com, go to the December archive.

Wednesday, January 04, 2006

Rough Day

Well, we started early this morning getting prepared for a sigmoidoscophy. That was complicated by stomach cramps and vomiting. I was only fifteen minutes late for my appointment. Next we stopped off at station 94 for blood draws etc. Then back out to get a CT scan. Then back to station 94. To make a long story short, I have been admitted to the hospital and may be here two or three days. All the exit appointments have been canceled and are being rescheduled. I am being observed for an inflamed and possibly infected colon. I also have a strep infection. beyond the two or three days, I may have to hang around ten days to complete the antibiotics. Right now, nothing is certain and I may have to go back for a colonoscophy tomorrow. I'm just thankful this stuff surfaced now rather than on the road or back in Columbus where they would be less familiar with my case.

Sorry I had to bring you all this bad news but apparently the way this game is played is three steps forward and one step back. Hopefully I won't draw a penalty card and have to take more steps back. I'm looking to advance to Boardwalk, do not go to jail, and collect $200 - ha.

Stay tuned...

Monday, January 02, 2006

Day 17

WBC = 5.3, 45% of which are neutrophils. Platelets = 96. RBC = 10.2.

I had a real bad time last night with lower intestinal cramping. Also had another round about ten when we were supposed to be at the clinic. I called to warn them we would be late. We got there about 11. They gave me some fluid and something else to help settle my stomach. I ordered mashed potatoes, english peas, and green beans from the room service (something you can do when you are a patient). Your "guest" can order too but they add that to your bill. The other gets put on you're bill too so what's the difference?

Anyway, I've been complaining about pain in my lower left abdomen long enough they decided to do something about it in terms of checking it out to see what it might be. Of course you know what that means, using a "scope" to go in (or up as the case might be) to take a look see. After they do that, they are thinking about doing a CT scan. Those will be my fun activities for Wednesday.

Sunday, January 01, 2006

Bird's Eye View of Mayo Clinic



I've been wanting to do this for a long time but haven't had the energy or time until now. Click on the picture if you want to see it a little bigger. I used my digital camera to take a picture of a drawing inside the Mayo Clinic brochure, A Guide and Map to Mayo Clinic's Downtown Campus 2005. Hopefully they won't arrest me for taking the brochure into my own blog. This drawing doesn't come anywhere near doing justice to how it looks in real time but it is better than nothing to give you a general idea of the size and scope of the clinic. It's kind of like visiting the Grand Canyon then posting one of the pictures you took in your vacation blog. The buildings are labeled with black dots which have letters inside. I know the letters are near impossible to read so I am going to copy the list below and try to point out some of the buildings.

Campus Buildings:
A. Baldwin----------- I. Harwick
B. Charlton---------- J. Hilton
C. Charter House---- K. Mayo
D. Colonial----------- L. Medical Sciences
E. Damon Parking--- M. Ozmun
F. Eisenburg--------- N. Plummer
G. Gonda------------ O. Siebens
H. Guggenheim------ P. Stabile

You can find a map of the complex including the skyway and underground at:
http://www.mayoclinic.org/travel-rst/maps.html

I have spent most of my time here in the Mayo, Gonda, Eisenburg, and Charlton buildings.

The Gift of Life Transplant House is on the corner of 2nd Street and 7th Avenue which is about three blocks down the street (West) from the Ozmun building. If you look closely at the top of the picture, you will see an arrow pointing West in the direction of Saint Mary's Hospital. That is 2nd Street. Turning around and heading back East, The Ozmun Building is the first one on the left (North) with a black dot (and white letter M which you can't read). Continuing East, what looks like one big building in the middle of the picture is the Mayo building on the south and the Gonda building on the north. Or, just looking at the picture, the Mayo building is on the left and the Gonda building is on the right. The black dot K is on the Mayo. Next to it is black dot E. Then quite a distance to the right is black dot G. The parking building (black dot E) is actually across 3rd Avenue from the Mayo and Gonda buildings and not connected to them (except through the underground).

But how are the two buildings connected you might ask. Well, remember the arrow pointing toward St. Mary's? Look real close and follow that in the opposite direction east all the way to what looks like a little bridge connecting the two shorter buildings in the front of the picture. That bridge connects the floors of those two buildings and is part of what is called the skyway. Outside is not a place you want to spend a lot of time when it is five degrees and the wind is blowing fifteen miles an hour. Therefore, there are a lot of those little "bridges" or sky ways between most buildings down town.

Now, take that concept to it's next logical level and you link multiple floors between buildings. Now you have a five decker "bridge" (which links Gonda and Charlton) or even a twelve decker in the case of the link between Mayo and Gonda. It isn't labeled with a black dot in the drawing but maybe it should be even though all it does is link every floor in the Mayo to every floor in the Gonda. Accordingly, the elevators are housed in the middle of that structure. It houses a good portion of the art in the clinic as well. The side you can see from the drawing is open from the underground level up to about the third floor. It forms a HUGE atrium which is named the Nathan Landow Atrium. As you can see on the drawing, the wall is a wave wall. Natural light streams through the 360-foot-long by 50 foot-tall glass wave wall into the atrium. The first time you see it, it is breathtaking.

Another thing about the connecting structure you don't really notice from the drawing is that it closed first street. The connecting structure is now the four lane, covered drive-up entrance to Mayo and Gonda. All the shuttles, cars, and taxi's form a constant stream all day dropping off and picking up patients, caregivers, relatives, and potential patients (especially if you lolligag too much in the four lane, covered drive-up -- BAM - another patient!).

Now, moving on to a couple of restaurants and a mall. If you are ever at Mayo, you will want to eat at the Red Lobster and Victoria's Italian Restaurant. Red Lobster is relatively easy to find. It pretty much slaps you in the face when you come into town driving north on highway 63 which by now has metamorphosed into Broadway. You will notice on the drawing an orangish front about ten story building on the corner of 2nd Street SW and 1st Avenue SW (runs parallel with Broadway). Well, that is exactly where Red Lobste is located -- in the corner of that building. The green triangle with the letter "N" is pointing north on 1st Avenue SW. Broad street is one street over to the ease.

Getting you to Victoria's might prove a bit more challenging. Although, if you continue North into the next block on the same side of the street as Red Lobster, Victoria's is in the middle of the block. Victoria's is known for their HEARTY portions. So, if you just got in from the airport, haven't had anything to eat all day except maybe an Egg McMuffin and coffee for breakfast and some airline snacks, you've checked into your room at the hotel, and now it is seven PM and you are absolutely starved. If all this is so, then you might be a candidate for a serving of Victoria's lasagna (which is out of this world!). I actually ate an entire serving of lasagna back in August when we flew here. One serving is actually a meal for a day. Now that we know better, we ask them to split an order. They charge $3 to split an order of lasagna but they bring an extra plate and rolls. If you do this at lunch, it only costs $17 (gratuity extra). I think it costs a couple more bucks at the evening meal, but then again, maybe not -- I can't remember.

After supper, if you want to go shopping, all you have to do is WALK across 1st Avenue SW to the Galleria Mall. It has a food court on the third level if you care for that kind of thing. On your way to the Mall, you will pass an old theater which was redesigned into a Barnes and Noble book store. It has two levels and you can spend most of a day in that one store. It also has a coffee shop.

Day 16

WBC = 5.1

They stopped the growth factor so WBC may drop some.