Day Plus Ninety-Five

I got home last night around nine-o'clock. Jody eat three meals at the hospital (not without complaint) and she seems to be able to move around better. The pain in her back has decreased. It is a wonder what hydration and a couple of steroids can do for you. We did a couple of laps around the hospital ward. The doctors came in early yesterday (Saturday) and told Jody they did not find any embolisms and her lungs looked clear. They (Doctor Bearman and the nurses) think she may get to come home on Monday, time will tell.

I have to go to Papa Joe's (Jody's father who turns 95 this month) nursing home this morning. He thinks he broke his hearing aid, again. He has a tough time changing his batteries and will not ask the staff to help. It is no big deal to fix. We (Papa Joe and I) are going out for breakfast, just the two of us. It makes him feel good, sort of a pay back for fixing his hearing aid. He loves IHOP... pancakes and bacon, every time. Afterwards, I will take Papa Joe back to the nursing home and then it is on to the hospital to be with Jody. I am hoping to hear lots of good things. I can not stay too long because "trick-or-treat" starts at four-o'clock today here in Denver. In years past Jody and I have developed a reputation as the SCARRY house. "Those people are CRAZY!" was heard often as the "trick-or-treaters" ran for their lives.



The little women




My best side





We did consider Uncle Fester as some of you have suggested

Several of you called yesterday, a couple texted... Jody loved hearing from you. Thanks!

I will try to post more tomorrow.

"Men build bridges and throw railroads across deserts, and yet they contend successfully that the job of sewing on a button is beyond them. Accordingly, they don't have to sew buttons."

- Heywood Broun

Day Plus Ninety-Four

Good Morning everyone!

Today is Saturday, October Thirtieth. Yesterday, Jody had a small setback. Let me immediately say Jody is doing fine, now you can read on.

The last two weeks have been a challenge for Jody. We had just ended a regiment of steroids to fight her GVHD (Graft vs Host Disease). (I first spoke about GVHD on "Day Plus Thirty-Two"... ) On "Day Plus Forty-One" I mentioned in my post Jody had begun taking a steroid for a skin rash she had on her legs. The treatment or regiment last for several weeks slowly lowering the dosage every couple of days. On the Sixteenth of October ("Day Plus Eighty") Jody ended the steroid treatment. Wednesday her appetite began to diminish and she became a little depressed mostly because she was not feeling as energetic. The doctors had told us to expect it when she stopped the steroid treatment, because the steroid acts as a stimulant. Doctor Gregory gave Jody a prescription to fight the depression. The medicine only deepened Jody's funk and we stopped taking the drug on Monday "Day Plus Eighty-Seven", mostly because I could not take Jody's attitude any longer. The following six days continued to drag by and I do mean "DRAG". On Thursday I was convinced we needed to go to the clinic, but Jody insisted she was OK. "I do not want to go, besides we have an appointment tomorrow, I am fine!" Jody and I decided (with some strong encouragement from me) to go to the movie "Secretariat" and it seemed to perk her up a little. After the movie our neighbors, Mike and Ray invited us to their house for dinner on Friday. She became more talkative and I thought maybe it was more depression than anything wrong. When we arrived home Jody became more lethargic, almost inebriated like as she moved around. She proclaimed to me she was not eating dinner, to which I replied it was not an option. "You will eat something." She grudgingly eat a cut up hot dog and some cheese crackers.

"Day Plus Ninety-Three" I woke Jody up about seven-o'clock. Our clinic appointment was at nine-thirty. Since our last visit on Tuesday, "Day Plus Ninety" Jody had been complaining about a pain in her back up near her clavicle area. This particular morning she was complaining it had spread across her back. I had to help her out of bed and into the bathroom, where she showered and began to primp herself to get ready for our clinic visit. I brought her some coffee and a peanut butter bagel and she appeared to be moving better, so I left her for awhile. When I returned she was on the floor of the bathroom.

We finally arrived at the clinic in time for our nine-thirty appointment. After a few pokes and prods by the nurses we waited for the Doctor Brunvand to stop in and see us. During the wait Jody had curled up on the bed and was dozing off. Doctor Brunvand arrived and told us the CBC looked great, but he was concerned about her pain. Her lethargy and staggering may be from dehydration. He wanted us to go to the hospital for some x-rays and return to the clinic for further consultation. Jody and I walked over to the hospital (the clinic is less than a block away) rather than drive and fight for a parking spot, besides the walk would do us good. On our return from the hospital to the clinic Jody had to stop and rest several times. I told Jody she needed to consider letting the doctor check her in the hospital for the weekend. (This suggestion was not going over well.)

Arriving back at the clinic, Jody again curled up on the bed and went to sleep. The doctor came in and talked with me about checking her into the hospital for observation. We both agreed it would be the best. Doctor Brunvand woke Jody and said he wanted to run some tests and begin another steroid treatment and felt it would be best that she went to the hospital. Jody protested, "I am fine!" to which the Doctor Brunvand replied... "I have been empowered by you and your husband to be sure you live another thirty years, and I feel a short stay in the hospital will be the best opportunity I have to ensure I meet my gaol. " Jody shrugged... "OK..." Jody and I waited for the doctor's orders and this time drove to the hospital.

We arrived at the hospital around five-o'clock. It was like "homecoming" all her favorite nurses were on duty. Jody settled in... After some more poking and prodding they announced she need to have a IV inserted. A less than perfect ending to an all ready lousy day. As everyone knows Jody does not like to see someone come at her with a needle, even her favorite nurse, Laura. The IV was being inserted to allow them to inject a contrast fluid into her blood stream. The contrast fluid would help them see during a "Cat-Scan" what was causing her muscle pain in her back. Doctor Brunvand wants to rule out another pulmonary embolism and pneumonia. (This morning Doctor Bearman confirmed there was no embolism or pneumonia... GREAT NEWS!)

This brings everyone up to date on what is happening. I will post more as we continue on our journey. I had been trying to post our progress weekly. I will now again try to make daily posts to keep you informed. I ask everyone to keep it on the bright side if you contact Jody. We have decided to call this hospital visit a "Tune-Up". She loves to hear from you so be sure to call, post a comment, email or write. Jody's hospital phone number is 303-839-6211. Again, please... no flowers, we do not know how long she will be in and she still can not be around live flowers with the possibility of mold or pollen.

"Love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is done well. "
- Vincent van Gogh

Day Plus Eighty-One

I awoke at my usual five o'clock and all is well. Jody had another good night. Some nights are more eventful than others. (By that I mean less cramps and frequent trips to the bathroom.) Jody continues to improve.

Today we are planing to go to the movies, since we do not have to go to the clinic. Our clinic visits have now been reduced to twice a week from three times a week. Jody want to see the movie "Secretariat" and being from Kentucky, so do I.

Denver is getting colder. It is 41 degrees outside now. We expect a high of only 57 degrees with showers. Colder wet weather concerns Jody and me, in that flu season is upon us. We are taking all of the precautions. I got my flu shot a couple of weeks ago. Jody will get her shot in the next two-weeks. They give her the shot, but are not confident that it will prevent her from catching the flu. Jody is on immune suppressant and anti-infection drugs. The drugs tend to counteract the effect of the shot, but their past experience is that it does not hurt. The downside risk is negligible and the upside risk is a bit more positive. This is something we have learned... everything we do has a risk and we need to weigh the risks... ask ourselves is it worth it. This disease called "cancer" really changes your life. You begin to think about a lot of things; very sobering things. Life is too short and too precious. There are risks to life, like smoking, drinking, eating too much, not eating enough, sleep, exercise and stress... to list a few. You begin to start weighing all of these risks. I want to see more of my kids and grand kids, but I can't. Number one because I live in Denver and they live in the mid west, but mostly because the grand children are very young and potentially catch lots of colds and other nasty things. The risk of getting sick is extremely high being around them. The doctors have told us it will be a year before Jody can start her immunizations, like Hepatitis B, etc. It will be at least two years before she can get a measles and mumps vaccine and she will never be able to get a small pox vaccine. Jody can never have a live virus type vaccine the risk is to high versus the reward. Avoidance of people and large crowds becomes very attractive to both Jody and me. This is not to say we will never be able to see our sons, daughter, grand children or nieces and nephews again. We will have to be very selective in our visits and avoid large family gatherings for awhile. Hopefully they will be able to come see us when they are well or during less risky times of the year. Jody and I love them all and all are our friends. So as you begin your day consider the risk versus reward.

"Joy, sorrow, tears, lamentation, laughter -- to all these music gives voice, but in such a way that we are transported from the world of unrest to a world of peace, and see reality in a new way, as if we were sitting by a mountain lake and contemplating hills and woods and clouds in the tranquil and fathomless water."

- Albert Schweitzer

Day Plus Eighty

Good Afternoon EVERYONE!

Here we are at "Day-Plus-Eighty", which leaves us twenty days left in the arbitrary one-hundred days. Jody's friend Linda just left. Her ten-day visit was a blessing to both of us. I was able to get away a couple of days; out on my own, even got in eighteen holes of golf (played lousy, but had a good time) and have a few beers at the club. It was good for both us, I am sure Jody was getting tired of me. She got to be scolded by her friend for doing things she is not supposed to do instead of me. (Not that Jody would ever try to do anything she is not supposed to do.) We ventured out for a lunch and a dinner. (The doctors told us we could, as long as we were careful and went at a slow time.)

Jody and Linda having a toast on the patio...

Jody and I got to spend some quality time together with Linda... like SHOPPING... Lots of laughs... and oh, did I mention SHOPPING...

I also want everyone to note... Jody is toasting Linda with a beer. She is no longer drinking her Seagram's and Soda. She now loves beer! Her favorite so far is a wheat beer, "Blue Moon". She has not gone to a dark beer or lager yet.

Jody and Linda... notice the garden

After we returned from the doctors, Jody insisted on having some pictures taken with Linda before she left. Friday was a beautiful Fall day in Denver and coupled with the GREAT news (see below) we received early in the day Jody was all smiles. ("I love to see her smile... remember the picture on Day Plus Twenty-Three)

Linda admiring Jody's new "doo"...

Linda and I wanted to get a picture of her beautiful long flowing hair... not enough to get a lock of hair yet.

She was complaining her head was getting cold, so Linda nuzzled Jody to her chest. Jody is known as her "Little Buddy". I think we can all agree...

Great News!
This past Friday we got the news... (I will get back to the news in a minute.) When Linda arrived on October the fifth, Jody and I had gone to the clinic for one of our scheduled twice-weekly visits. During the visit we were informed that Jody's HCT had dropped below twenty-five and that she needed to have a blood transfusion immediately. Linda was due to land one o'clock and it was just eleven-thirty so we decided to walk across the street to the hospital and get things started. I would then go the airport and pick Linda up and return with her to the hospital. After some confusion at the hospital, Jody and I finally ended up in the infusion center.

Linda called... I told her she should have a "bite-to-eat" at the airport, while I checked Jody in to the hospital for a blood transfusion. "OH NO!"

The last time Linda visited Jody was back in May. Jody had gone into the hospital (see week Four, Five and Six) and during her visit went into intensive care. "No worry, Linda... we have been expecting this for awhile... Jody's HCT had been low for several weeks." I slipped Jody a Xanax to keep her from going completely "Berkowitz" on the nurses (You all know this is totally out of character for Jody, she loves it when things do not happen the way they are supposed to. RIGHT?). The hospital was in transition... A long story short... On October one Rocky Mountain Bone Marrow merged their clinic with Presbyterian Saint Luke hospital. All of the transfusions were now being done at the hospital.... new records, new people, short staff, you name it, things were not going smooth.

Jody began to mellow out (brought on by the drugs I provided) and the nurse had begun the "cross-match" and "blood typing". I told Jody I would go and pick up Linda at the airport.

Linda and I arrived back at the hospital around four o'clock to find out Jody is still waiting for her blood to arrive. Our morning had begun about 4:30... We had to wake up and begin to warm her IV fluids (The IV fluid stays refrigerated until I hook her up. It usually takes a couple of hours to warm up.) The IV fluids had to be connected by seven o'clock in order for them to be done prior to our clinic visit, which was at eleven (they can not draw blood with her IV connected). Jody was grinning from ear-to-ear (I immediately thought she had gotten more drugs.). She announced to Linda and me that her blood type had changed. Jody's blood type had gone from O-Negative to AB-Positive (see Day Plus-One). Jody's blood type was O-Negative and her donors blood type was AB-Positive. Jody has changed to her donor's blood type. The hospital hematologist told us that if he had not known she had a transplant he would never have known she was O-Negative. " Stay with me now... this is not the BIG news..." In other words the hematologist saw no AB antigens in her blood.

The term Antigen comes from antibody generator the term refers to any molecule that can be bound by a major histocompatiblity complex and presented to a T-cell receptor. "Self" antigens are usually tolerated by the immune system; whereas "Non-self" antigens are identified as intruders and attacked by the immune system.

Blah, blah, blah... In other words Jody's immune system is now her donors immune system and is no longer hers. The Infusion center was all a buzz. Jody finally was hooked up for infusion about five o'clock. The infusion typically takes five-hours. Jody, Linda, and I crawled into bed about eleven o'clock.

The following day (10/06) we needed to be back at the hospital by one-thirty for Jody bone marrow biopsy. Our morning began again around five o'clock, because of the IV fluids, etc.

Linda was allowed to observe the bone marrow biopsy with me... this was my third observation her first. Things went a little difficult this time for the Physician Assistant (Trudy). She had a difficult time getting enough aspirant (bone marrow) out of Jody's hip. It took her several tries to get enough sample for the doctors to analyze. Linda was beginning to squirm in her seat each time they went back in to try again. I am not sure Linda wants to watch again, but she did well. Jody came home pretty sore and stiff for a couple of days.

The rest of the week was pretty normal until Friday. We went to the clinic for our twice weekly appointments. This time we were scheduled to meet with her BMT team doctor, Dr. Mark Brunvand. We could see the excitement in his face as he entered the room. After exchanging pleasantries Dr. Brunvand announced to us the results of the bone marrow biopsy.
"This is the really BIG news we all have been waiting for..."
Jody has 100% engrafted her donor's stem cells into her marrow. She no longer has any of her own (defective) stem cells left in her... not 94%... not 97%... 100%. He went on to caution us... "I am telling you, you have a very strong graft and I am excited for your longevity prospects. You should do well. But I want to caution you... You have a very young immune system seventy-nine days old, which is still being developed in you. It is like a truck going down the highway with a heavy load, as long as the road is flat things will run smooth with some ups and downs. You will have hills to climb and since your engine is weak, you will struggle getting up the hills and we will from time to time have to help you. But all things being considered... we would gladly accept some GVHD (Graft vs Host Disease) for the alternative, Leukemia. We have to continue to build your immune system, strengthen your engine and avoid getting sick." The scarred bone marrow is still in Jody and the disease is still present. Jody's new stem cells will get stronger and will mount a defense as well as an offense to block any future damage, repair some of the scarring in her marrow, and help prevent her from getting sick from something else. 

I am sorry for such a long post. I am very excited to share the GREAT news with everyone. We have another bone marrow biopsy scheduled for November the fifth. Dr. Brunvand indicated this may or may not happen. From here on out it is pretty much twice a week to the clinic to monitor her CBC. I will keep you posted and let you know if there is any change.

We love you all! .... Please call, write or email... Jody loves to hear from you...

Day Plus Seventy-Seven

I AM BACK.....

OK let me give you a brief tale of woes...

It all began approximately three weeks ago. I (being the genius I am) decided to update my Microsoft "Explorer" to Version 9 Beta... "How bad could it be?" "I am sure they made it faster and better"... RIGHT... None of my print programs would work correctly... none of the function keys would work on "Google's blog site"... the new explorer was different, more streamlined, faster, simpler...  Needless to say I was all messed up. It took me a week to figure out how to delete the Version 9 and go back to Version 8. What a mess...
The following week I got up early and tried to update the blog. I could not get on the Internet. I tried everything I knew to do and was REALLY UPSET that I must have done something wrong when I deleted MS "Explorer". I eventually discovered I was not connecting to the Internet... Called Comcast and talked to India (isn't that fun?)... plug this in... unplug this... switch this... reset the modem... shut done and restart... GET THE PICTURE? Half the time I did not understand what he was saying. They decided to send a "Technician" out to see what the problem was... Thank goodness Jody and I have a maintenance agreement... "YIKES!" (Trying to be PC, it is not what I really said)... I discovered the problem... the Internet was down in the whole complex... and it now has come back on...  "OH NO!"  I switched the power from the router to the modem... ZAP, there goes the router. Modems OK, router is dead... "No connection to the modem. OK, well I can plug directly into the modem from the desk-top... how do I connect to the printer?" One problem begot another problem and I shut down.
It took two-weeks to finally get the router (that was another fiasco with Comcast, I won't bore you with the details... let it suffice to say I got a free router including the shipping) and another four-days to get it installed, add in a couple of days to get caught up on my paper work and we arrive at TODAY! Enough said... I am moving on.

Jody is doing great! I have so much to tell you. Back on "Day Plus Fifty-Two" I told you I have some pictures

We purchased a tent for the back porch so Jody can get outside

Dead heading the flowers... Jody knows it as "Dead Beat"...  

Here she is...

She was so excited, the doctor said she could do the ironing...

She had to wear a mask... Notice the hair to her left just above the ear

Canning peppers from Jody's Garden

We took the garden out and built a "Fall Vignette"

How do you like those Mums?

Jody is so excited, she is cooking tonight and she is calling me to dinner. I will catch everyone up with the next blog... Please come back tomorrow...