This is Jody's Garden. We are planting our seeds in hope of growing a beautiful garden. We hope that by explaining our progress and some random thoughts we can keep everyone informed.
Friday, December 31, 2010
Day Plus One-Hundred-Fifty-Six
We have no plans for tonight... probably will not even wait (stay awake long enough) for the ball to drop. Living in Denver the ball drops in New York at ten o'clock our time. WHOOOOPPPPEEEE! 2011 has to be a better year, so you can surmise we are looking forward to next year. I thought for a minute I might go over everything that happened in 2010. But then again who cares... It was a bad year (Jody was diagnosed) and yet it was a good year (Jody got her stem cell transplant) so I do not know... I think I will just say I am glad it is behind us... We are moving on!
Feel free to call or write tomorrow, we will be up early watching the parade, dog show and football. Jody and I hope everyone has a safe and HAPPY NEW YEAR! See you next year...
Thursday, December 30, 2010
Day Plus One-Hundred-Fifty-Five
Jody is having a good day... It seems we have one good and one not so good. My last post was on Day Plus One-Hundred-Fifty-Two, which was Monday. It was a good day and we did absolutely nothing, so I posted some pictures for everyone.
Day Plus One-Hundred-Fifty-Three started off rough, Jody just was not feeling great. She was moving slow and everything was a struggle. We went to the Clinic and had a GREAT CBC report. All of her counts went up, red blood cell, white blood cells, and platelets. It made us feel a lot better. Janet, who is a Physician Assistant, went over all of our medications and pronounced "Jody is doing well". It made us feel good hearing it from her. We set all of January's appointments and scheduled our visit with the Thoracic Surgeon and went home. The visit went well, but Jody was not in the mood to talk or do anything.
Day Plus One-Hundred-Fifty-Four started off fantastic. Jody slept well and was feeling good. We started her IV fluids early. I am not sure if it was the good night sleep or the fact that she talked me into going to her favorite store (Coldwater Creek). I agreed only on one condition that we stopped for an early dinner at my favorite Pub, McCabe's Irish Pub, reluctantly she agreed. This was our first day out carrying a ten pound oxygen tank. We had a discussion, which looked better; me carrying the tank over my shoulder with the oxygen line tied around Jody's neck or do we bring a little two wheel dolly for her to pull the tank behind as she shopped. We decided I would carry the tank and walk alongside her holding hands; hopefully it will not look so awkward. So when her IV was complete; off we went... but first we needed to swing by the hospital.
We have been having a bit of a challenge getting an anti-fungal medicine. I first mentioned our challenge back on "Day Plus One-Hundred-Forty-Eight". We thought we were getting a month's supply and ended up only getting five-days. (I now know why and will explain latter.) The medication called "Noxafil" is on worldwide allocation. The drug store near our house, said they could get it but after several back orders things looked doubtful. We contacted the Clinic to see what they could do to help and they got the ball rolling at a drugstore in the hospital. Numerous phone calls back and forth finally confirmed they would have a month supply in Thursday afternoon. We were short doses of the medication to make it to Thursday. The Clinic pharmacist called the hospital and they released another two doses to us on Wednesday. We were to pick up the needed doses around noon.
After picking up our medication, we headed to the mall. As luck would have it we found a parking spot in front of the store. Jody, with a gleam in her eye swung her feet out of the car and started for the store, when she felt a tug as if she had just been faced masked by a line backer. It was the oxygen tank. I was not quick enough to pull it out of the front seat. After some weird choreography and a few expletives we finally strapped the tank onto my shoulder and proceeded to the store. Jody pulled the door open and stepped in not realizing the door was not open enough for the two of us. Bang! I hit the door and fell against Jody causing us both to stagger into the store. Gathering our composure, we looked around to see if anyone noticed and I whispered in her ear "you need to remember there are two of us". Off we went hand-in-hand shopping for the perfect blouse... "Everything 50% OFF" signs were everywhere. We found a artificial twelve inch tall Christmas tree for me to carry, as well as a couple of blouses (They were just OK). "What do you think? Will this go well with my taupe pants? "I do not like the shade of pink, what do you think?" I grunted and nodded my head, feigning I knew what she was talking about... When all of the sudden one of us had to go to the bathroom (guess who). This we did not plan for... Throwing the blouses over one of my shoulders and Christmas tree in hand I went as far as I dared. I handed off the oxygen tank to her just as the door closed. I waited at the door for her return, gathering a few stares from other female shoppers. "Sir, the men's room is at the end of the hall." "Thanks... I am waiting for my wife." Jody returned and we were off again moving stealthily through the racks; zigging and zagging, when all of a sudden there it was "the perfect blouse". Not just one but two (different patterns and shade , of course) who would have known! What luck? Now It's off to the dressing room to try them on ( It has been explained to me before that women have to try things on. Just because it is in their size, does not mean it will fit. Men, on the other hand pick it up and if it says its their size it will fit. Unbelievable?) "Uh sir!"" You are not allowed back here..." "It's OK he is my husband...he is carrying my oxygen" "Well, Uh, .OK but there other women back here... Let me know when you are coming out, sir." Red faced I proceeded to squeeze in the changing room with Jody. There is something crazy about this, Jody lost a part of her lung... was in the hospital for nine days... out of hospital for six days... and she could not pass up a Coldwater Creek 50% off sale. It must be in her DNA, never miss a sale, especially Coldwater Creek. Well I survived, I mean Jody and I survived and I got to go to my favorite pub. "Sheppard's Pie and a pint of Guinness for me". (Its in a man's DNA...)
Thursday, (Today) we awoke waiting for the pharmacy to call and tell us the Noxafil was in and I could pick it up. Jody must have slept wrong, on her side I think, she is complaining about some pain in her chest area. She is very concerned about me driving back into town, because a snow storm was coming. Finally, just after lunch the pharmacist called and told me the Noxafil was in and ready for pickup. The snow had just started to fall. I drove downtown to the pharmacy and back without a problem; however, I witnessed four accidents and watched two guys do donut circles in the street. It is our first big storm this year and it seems like everyone forgets what they learned last year... how to drive in a snow storm. Take it slow, do not stomp on the brakes, keep adequate spacing... you know what I am saying. I almost witnessed a guy hit two women standing beside the road, trying to cross with a baby no where near a crosswalk. Thank goodness there was a high curb that bounced him back into the lane. I mentioned earlier I knew why they were so stingy [ pronounced "stin-jee"; meaning, ungenerous] with the medication... When I picked up the medication my co-pay was $50.00 because it is a name brand class four drug. The pharmacist said you saved $4,800 due to your insurance. Can you believe that medicine can cost that much? No wonder our health care is so expensive. Thank you HMO Colorado!
That's it for tonight... Love to all... In case you are wondering Jody and I are not going anywhere tomorrow or Saturday.
Monday, December 27, 2010
Day Plus One-Hundred-Fifty-Two
Jody, Myself and Jody's father |
I know I should have put this in the blog sooner, but I still wanted you to see it...
Jody and I had Thanksgiving Day dinner with "Papa Joe" at the nursing home this year. I love this outfit... it was her Christmas gift from me and she wanted to wear it to the dinner. I had to buy it with her so she knew I had it.
Nativity Scene |
Here's our Christmas Tree... |
This was the last thing Jody did before we went to the hospital the next day... Notice the presents have not arrived yet. "I do not know why it looks like it is leaning..." it could be the photographer (Jody)?
Christmas morning... Complete with the "Yule Log" burning |
Off to get "Papa Joe" I love the new hat and bow-tie |
Something Sexy.... Yeah Baby! |
Jody and her father waiting for the Christmas Goose |
Sunday, December 26, 2010
Day Plus One-Hundred-Fifty-One
Jody had fun talking to some of you who called, even though her conversation is short, she is always excited to hear from everyone, it makes the day go faster. I am planning to work on the computer tomorrow. I think Jody is planning to work on her nails and do some ironing (everyone knows how Jody likes to iron... I have just about convinced her not to iron my shorts; "just fold them and put them in my drawer, honey"... ). The doctor gave her the green light and Jody has gone "Berkowitz" ironing everything (Berkowitz is won of her sayings... You all may remember him. He was the "Son of Sam" and killed a bunch of people. HEY!? Maybe I should be more careful?).
Has anyone else had trouble trying to convince Jody not to do something? More specifically has anyone attempted to talk Jody into not doing something for them? She is the most giving person I have ever known. I am sitting on the couch watching TV (by the way, both legs are good); Jody is wrapped in two layers of clothes, a blanket, can not get comfortable because of a pain in her back, with her feet up because of the swelling, and it takes her 2-3 minutes to get uncovered, 2-3 minutes to grunt and groan to get out of her chair, a minute to catch her breadth... and she looks at me... "can I get you a beer or something else to drink?" Thank goodness we bought a refrigerator this summer and put it in the garage. I keep my beer; "OH excuse me," our beer in the garage refrigerator. I am so happy she only has a fifty foot tube attached to her oxygen unit, or she would have gone. "Uh! No honey... besides your tubing won't reach." "Oh I forgot..." Do you understand what I am saying here? Jody is always thinking about others and no matter what, she will not stop and think of herself. She mentioned to me tonight that I need to figure out away to drag her and her oxygen tank down to the Hallmark store so she can get her January birthday cards. Any ideas on how to handle this? Give me a call, please!
It is now 8 o'clock and we are off to bed. There is nothing on TV we want to watch... "Hey the Bronco's won today... Beat the Texans." Tim Tebow looked really good, everyone is comparing him to John Elway. I hope they do not jinx him. Jody watched every minute of it, even when I fell asleep in the first half.
See ya tomorrow, I will post some pictures for everyone. Love you!!
Oh by the way, It is still OK to call. Jody may not be able to talk long, but she does like hearing from you.
Saturday, December 25, 2010
Day Plus One-Hundred-Fifty
We have had the most fantastic Christmas (mostly because Jody was home)! Jody's father came over for dinner tonight and everything went smooth. Our Christmas day began around 4:30 in the morning, when we both awoke and began looking at each other. "Why are you looking at me?" "Why are you looking at me!?" "I don't know, do you want to go see if Santa came to the house last night?" "I will go check"... so I in my kerchief with a jerk I arose... OH wait a minute somebody has all ready written that story...
The two of us scurried downstairs; like little children, to open gifts. We turned on the TV and watched the "Yule Log" on cable. This is some exciting video if you haven't seen it, check it out... Oh yes, and they play background music for the season (Jody happens to like it, so be careful with your comments). Around 8 o'clock we went back upstairs to get dressed (not that we were undressed.... we were in our pajama and robe). I started the preparing the Christmas dinner and by 10 o'clock and then I was off to get Papa Joe. We had a quiet day with Joe; eat dinner, talked with some friends and then took Papa Joe home around 5 o'clock. Here it is 7:30 and I am writing this post.
Jody had an off and on again day. For the most part she felt good... a couple of times she struggled breathing and had some back pain. Jody is having a GVHD attack on her side around the incision. It can be painful at times, mostly just itchy. Jody has a cream she puts on it to help. We have no plans for tomorrow, just watching TV or reading. This could be an opportunity to call. I am sure Jody will be calling some of you depending on how she feels.
Love to all... Merry Christmas!
Oh, by the way, my grown adult children called us on Skype to wish Jody and me a Merry Christmas. I snaped a picture of them. The grandchildren were playing with their gifts and would not sit still long enough (there are five grandchildren from 2 to 8 years old). It is hard not being with them.
Left to right; PJ, Ryan, Shannon, and Brady |
Friday, December 24, 2010
Day Plus One-Hundred-Forty-Nine
Jody slept very well last night with almost no discomfort. She woke me up around 3 o'clock humming Christmas songs. She got out of bed totally on her own, took a shower, got dressed for the day and walked down the stairs without my help. This is exciting to see her rebound. Now it is all about building up her lungs and working on using her arm and leg muscles again. Each hospital stay has weakened her.
Jody and I are getting ready for Christmas day. We are going to bring Jody's father over from the nursing home around 10 o'clock and we plan to have a simple Christmas dinner. I am heading out to pick up the missing ingredients.
I finished yesterdays post and I will try to post more latter on today...
Call if you want, she loves to hear from you...
Thursday, December 23, 2010
Day Plus One-Hundred-Forty-Eight
That being said... This is Jody's first full day at home. We had a little bit of a challenge getting used to our bed again. Pretty much all day I was working on her medications. I had to call the hospital because one of her medications is on allocation and our local pharmacy can not get it. The nurse in charge said I could come down and pick up her dose for today, so off I went. On my way home I stopped by the pharmacy to pickup some polysporin for her dressing, when I got a call from the hospital pharmacy. They could supply me with a month supply of the medication until my pharmacy could get the prescription in. So, I was off again to the hospital. Picking up drugs... setting up a weeks dosage in Jody's pill box... talking to her hydration supply company... and the oxygen supplier... my day was gone... here it is almost 4 o'clock and I am just now working on my "post".
Yesterday, before we left the hospital an unbelievable family stopped by to wish us a Merry Christmas. We were wondering what was going on out in the hall. Several of the nurses and the entire Biggerstaff family (mother, father, two daughters and their son Cody) family came into Jody's room to wish her/us a Merry Christmas. Students from Colorado State University and Cody's sisters high school and friends all go together and make beautiful blankets and slip them into big Christmas bags and present them every year to Bone marrow stem cell transplant patients in the hospital during the Christmas season. Cody has had two stem cell transplants; one autogenic from one of her sisters and the second was alogenic (the same as Jody) from and anonymous donor. The blanket the nurses choose for Jody was a big red blanket with dog prints on it. When they presented it to Jody; they said they knew right away, which blanket to give her based on what the nurses told them. It was quite emotional. Especially exciting to meet the family and here their story.
Here is the link to the story of when Cody was able to meet his donor back in August of this year when Jody was just coming home. It was also on National news... Click here for the link... Donor meeting celebrates a gift of life in Denver
What a crazy day...
Wednesday, December 22, 2010
Day Plus One-Hundred-Forty-Seven
When I left yesterday Jody was in good spirits and excited about coming home. I try not to dampen things, but anything could happen. LIKE!... last night! I called and Jody had an accident, she said she would call me right back... 30 minutes go by... I call back, she said; "I will call you back..." (can anyone guess what is going on?) She finally calls back and admits she was cleaning her room after her accident. I said that was "great", but "now think about it, does cleaning your room make any sense?" "Nurses are trained to take care of you and paid to do a job." I said; "Why would you want to do their job for them?" " They can call for cleaning service or a tech to help." "What about your surgery?" Jody said, "I was careful, took my time and I washed my hands." It is so hard for me to get her to let people help her. Jody was so worried about being embarrassed and having somebody clean up after her. I love her forever, but struggle daily to get through to her. Her best friend in Jersey called her a "Stubborn Old Goat". The funny thing is she admits she is a stubborn goat, not old but just stuck in her ways... Jody goes right on doing things she shouldn't. I guess we all are like that to some extent... I am positive I am... OK... True confession... I have a strong personality (for those who do not know me this might be a surprise, but those who do know me I am sure you are not shocked), that until people get to know me, they think I am over bearing... bossy... all ways wanting to one-up someone with a story... think I am always right. And... Oh Yeah... I have a severe LOW tolerance for stupidity and freely demonstratively express it; through facial expression, sighs, and tone of voice. There are all sorts of reasons for this and not enough therapy to help me. (If we are all honest with ourselves, we are all flawed.) How Jody has learned to cope with me, I will never know. I recognize my faults and I try not to be all of the above and still I catch myself... It is so hard to change a behavior that one has learned and ingrained in himself, convinced himself he was right and everyone else was wrong and then do it for 62years. When you love someone and cut through all of the bad stuff and see his/her heart... know he/she loves you... would do anything for you... you truly know deep down that the person is good (a little flawed, maybe) then nothing else really matters... you deal with their flaws. If you are a friend of mine you accept the annoyance, brush it aside and realize I would do anything for you... maybe more than you want me to, but that's my type "A" personality kicking in (always out-going, talks too much and wants to do it all... "this is for the benefit of some of you out there who may think "A" stands for something else, by the way I do have the power to delete"). Jody has the same type "A" personality, I guess that is why we get along so well. I keep working on Jody as I am sure she is working on me. We learned an exercise (sometimes we forget it, and then go, Oh Yeah!) where the person who is most upset places his/her hands palm down in the other persons hands. (hard to do over the phone, but she did listen... "I think")This means the person who has the palms up has to listen, while the other guy talks and when he/she is done you switch... no screaming just try and get your point across uninterrupted. It works! Try it! As for what got me started on all of this... "I am dealing with a stubborn old goat"; who I love and want to be with for a long time, who listens and then does it anyway, who has now (you heard it hear for the FIRST time) agreed she will listen to me and let me do things for her... "HOOOOOO RAAAAAAY!" "I wonder how long this will last???"
Jody just called and she is headed to x-ray to be sure everything looks good in the lungs. Jody said she was ordering breakfast and showering afterwards to be ready to go home. I have my instructions on clothes to bring, so hopefully all goes smooth and she will get to come home. Her ANC is down a little from yesterday, but still in the OK range and her HCT has shot up because of the infusion she got yesterday.
X-ray came back fine, the Infectious Disease doctor stopped in, so we are down to the BMT gang. Looking good... I am getting ready to head out.
Jody and I arrived home at 5:30... We picked up Jody's perscriptions and by 6:45 we sat down for a candle light dinner, just the two of us. An hour latter the oxygen arrived and by 9 o'clock she wanted to go up to bed. I decided to stay up and read a little. Good night everyone... See ya tomorrow...
Tuesday, December 21, 2010
Day Plus One-Hundred-Forty-Six
I try to let her sleep as much as she wants, so as soon as Jody wakes she is supposed to call me. Lately Jody has been forgetting and I have had to call the nurses station to find out if she is awake. The shift change is at 7:30 am and Jody is usually hell bent to get her teeth brushed and her face washed. So if she sleeps in the least amount Jody is too trying to get the nurses assistance to call and delays her call until she orders breakfast.
The doctors begin to arrive around 8 o'clock so depending on how sick Jody is or where she is as they make their rounds dictates when they see Jody. It is always the same "How do you feel... sit up let me listen to your lungs... take a deep breadth... how does your incision feel... let me look at your chart and get back to you." Jody being who she is always slows them in their tracks... "I am feeling OK... en ah way ( pronounced "n-nah-way")... I like your sweater... en ah way... Your shoes are so cute.. where did you get them.... en ah way... Can I go home today... Will I see you tomorrow... when is your birthday so I can send you a card? en ah way... en ah way..." (everyone who knows Jody can just about hear her say those things...). It is all about love... "I (we) LOVE you Jody! I (we) are not making fun of you... I (we) want you to get better! "
Jody just called, she claims to have just got up. I can tell by her voice she has gotten stronger, her voice is a little clearer now. She is still coughing (the doctors say that is good) and during the coughs she is not in acute pain. All good signs... Jody told me her ANC had come down a little as some of her blood counts dropped. She could not read it on the board, so I will have to get back to you. The ANC is expected to fluctuate plus or minus 5%. What they really look for is trends... over a period of time... I doubt that anyone will be alarmed with the numbers. Jody did not want to talk with me any longer because she needed to order breakfast. You can now see where I rank... no really this is good it means she has an appetite. The doctors had all ready stopped the IV nourishment on Sunday afternoon.
Just got off the phone with Jody and the doctors have removed her chest tube. The surgeon said he would sign that Jody could go home tomorrow. Infectious Disease is checking on setting us up with home IV meds. We need to re-set appointments at the clinic to watch her blood chemistry, her HCT is low and she may need to get an infusion soon. This leaves the BMT doctors who indicated yesterday Jody could go home... Jody is still a little weak and I am not sure, but we may need to have home oxygen delivered. Looking good... cross your fingers, toes and whatever else you might have... I will let you know more tonight.
They decided to give Jody a transfusion. Her HCT was 25.4 but her Hemoglobin was down to 9 something. They will give her two units of blood to see if they can raise the HCT. Since I am not a doctor I am assuming that by transfusing Jody now may help her mend quicker.
I just left her and her spirits are high. Jody is excited to get to come home. On the other hand, Joe (Jody's 95 year old father, who lives in a nursing home) feels she should stay in the hospital for ever... God love him... Hope the doctors do not listen to him...
Love to all... I will be back tomorrow
Monday, December 20, 2010
Day Plus One-Hundred-Forty-Five
Jody also needs to exercise her lung capacity by sucking in on a breathing apparatus ten times every hour. As she inhales she raises a little diaphragm, which measure the amount of force or suction. Jody is fanatic about doing her exercises. Most of us take short breaths in and out all the time... Jody has to learn to inhale deeply and purse her lips when exhaling to strengthen her lung capacity and increase circulation. We all need to consciously do this and unless we are purposely told to deep breathe this way, many of us do not. Yoga teaches breathing techniques like this to improve our health. For Jody it is critical that she improves her lung capacity after losing 10-15% of her left lung.
Her CBC continues to improve, everything is back up including her HCT, White Blood Cells and Platelets. This tells the doctors her graft is strong and continues to gain in strength. In addition, Jody has not had any GVHD attacks during this episode, which also bodes well for her recovery.
I wanted to catch up on some of my book keeping before going to the hospital. I spoke to Jody a couple of times and she sounds a lot better over the phone. They are taking some x-rays to see how she is healing inside and determine if they can remove the tubes from her chest. We should know this afternoon.
I will write more latter....
The results came back too late for the doctors to do anything, so we are hopeful for tomorrow. Jody is resting so I decided to go home...
Sunday, December 19, 2010
Day Plus One-Hundred-Forty-Four
By 1 o'clock she decided she wanted to get out of bed so the nurse helped her move to a chair. She stood for awhile and then moved to her chair. Jody's blood pressure has come down closer to her norm and her ANC (see "Day Zero" post) is back up to 4999 (Jody's ANC had dropped below 1500 prior to the operation). Jody's White blood cell count has gone up considerably, which indicates her new immune system is mounting a response to her infection.
The Bronco's play Oakland at 2:15 so we are settling in waiting for the game to start. Jody is excited to hear Tim Tebow will start. We have been discussing the game plan and the 4-3 defense pros and cons. ( This would not be possible with out her transplant and the fact she now has X and Y chromosomes. Ha!Ha! Let's see now she like Blue Moon Beer, loves hot peppers and wants to talk about football.)
The ICU physician stopped by to examine her and declared Jody is doing great. He thinks Dr. Metzdorff will probably be able to remove the tubes from her chest tomorrow. "Wouldn't that be great!" Jody and I are both holding out hope that she can come home for Christmas... not sure where the doctors are on the idea. If the surgeon removes the tube for her chest, the BMT feels she will be safe and Infectious Disease thinks I can give her antibiotics at home, it could happen. ("Oh, I almost forgot she has to have a pooh, too." you would be surprised how important this is...)
DARN! The Broncos lost, but Tebow had a good game. Jody has put the blame on the coaching staff, she is certain they had a bad game plan. Oh well, next week we have the Texans. Maybe that will be a turning point for the whole season.
Jody had her Chicken Tenders with French Fries. I think she looks content. One of Jody's many favorite nurses, Jane is on tonight, so she is happy. I turned on a Christmas show for her and I will be heading out to get some sleep and start all over tomorrow.
Continue to hold the calls, I will let you know when it would be good. If you just have to call, keep it short and do not have her go over all that has happened. She struggles to talk and is short of breadth. Think of something that will make her smile, laughing hurts.
Keep the prayers coming! You are doing GREAT... Love to everyone. See ya tomorrow...
Saturday, December 18, 2010
Day Plus One-Hundred-Forty-Three
Dr. Metzdorff stopped by around 11 o'clock to check her incision and drainage tubes, all of which passed in flying colors. He was excited to see there was no seepage from the incision. (The incision starts just below her shoulder blade on her back and runs across her side to her front.) Her chest also has a tube coming out just below her rib cage to keep fluids from building up in her thoracic cavity. Dr. Metzdorff saw no reason she could not return to the BMT ward.
The ICU doctor wanted to begin reducing her nitroglycerin drip and see how it affects her blood pressure, which has remained high. I went to lunch and returned to find Jody alert and wanting to stand. Greg, the ICU nurse thought it was a good idea so together we helped her to get out of bed and stand. She stood for awhile and marched in place. Her blood pressure did not increase. He felt this was a good sign.
Around 3 o'clock we were enroute back to the BMT ward. As a matter of fact we returned to the exact same room we left from on Thursday morning. It felt good to be home, not home, home, but a bit closer. Jody is sleeping a lot and is still on self-administered pain medication. "WOO HOO!" Because of the pain medication Jody is having trouble expressing her thoughts, which frustrates her.
It is now around 6 o'clock and I am preparing to go home. I first have to get her to order something. The have removed most of the IV's and she can now move her arms freely. Jody has to eat something to be able to tolerate her night time medicines. I am planning on returning around noon Sunday.
Please hold your calls for awhile... emails maybe, but she is not really looking at the computer... text messages drive her crazy because Jody does not text to well. Her room is 3211 and her phone number is the same as before (303-839-6211).
Love to everyone and more than anything we appreciate the prayers!
Friday, December 17, 2010
Day Plus One-Hundred-Forty-Two
The surgery was successful!
She was moved to recovery at 11:40 (the operation lasted three hours and thirty-seven minutes). The surgeon came out to talk with me. He said the surgery went smooth and there were no complications. He feels confident he was able to remove all of the diseased part of the lung. They discovered the small spot in the upper part of the lung was less than they had originally thought. The rest of the lung looked clear. They will send the lung tissue out to determine exactly what was growing in her lung. The report should be back in a couple of days. The surgeon said the operation took a little longer than he thought because he wanted to be sure he found all of of the fungus and that the operation was as minimally invasive as possible.
I am waiting for her to be moved from recovery to ICU, where I will be able to see her... I will let everyone know how Jody is doing.
Finally got to see Jody around 2 o'clock... Lots of tubes and breathing apparatus but she is responding. They are having some trouble controlling her blood pressure, but that is to be expected. It is tough trying to carry on a conversation with her as she goes in and out of conciousness. Jody knows who I am and what has happened but she is a little confused, this is understandable after what she has been through. I decided to come home early to get some sleep. She has her own Nurse, an Intern and a ICU doctor looking after her and I am just in the way. I will be back with her by 8 o'clock.
See y'all tomorrow...
Thursday, December 16, 2010
Day Plus One-Hundred-Forty-One
More to follow...
Around 3 o'clock Dr Bearman stopped in to meet with Jody and me. He told us the pneumonia in Jody's left lung is due to a fungus called Zygomycetes, which is in the family of mold called Mucor. It is the same as a everyday bread mold and it is around us every where in the air and in the ground. A person with a normal immune system does not even know they have the fungus and their immune system easily destroys it. In Jody's case it can be a problem if it is not dealt with immediately. The doctor explained to us that it is not connected with the blood bacteria (The blood bacteria in Jody's blood is called Pseudomonas) they found in Jody's blood culture. It is a blessing (if that's the right term) she had the bacteria infection... it caused her to spike a fever... which caused them to look at her lungs... which caused them to do the broncioscope... which allowed them to discover the fungus. This fungus is what they watch for in allogenic transplant patients. It is usually not detected because the patient has no signs of infection until their lungs are fully engulfed. Dr. Bearman informed us he has called in a cardiovascular surgeon to discuss with us what needs to be done.
Doctor Metzdorff (a cardiac, thoracic, vascular surgeon) stopped in to discuss our options. The mold is confined to Jody's left lung, specifically the lower left lobe. They also found a fifty-cent size spot in the left upper lobe. Antibiotics will have no effect on the fungus, anti-fugal drugs can take too long to have an effect and the fungus can spread rapidly. The only option we have is to remove the infected part of her left lung.
The doctor explained to us he wants to operate on Jody at 8 AM tomorrow. (You could have picked us up off the floor.) Jody has been doing so well and shows no signs of discomfort. Dr. Metzdorff is confidant he will be able to remove ninty-nine percent of the mold and the infectious disease doctors can take care of the rest with anti-fungal medication. The operation is not without danger. Her immune suppressant drugs have compromised her blood vessels and bleeding is a big concern. Dr. Metzdorff assured us he will take every precaution.
The operation is expected to last about three-hours. After surgery she will have two-tubes stuck in her chest to drain any fluid build-up and remove air from her chest cavity to prevent her lung from collapsing. She will initially be moved to intensive care where she will be under constant watch. If all goes well Jody will be moved back to the BMT ward on Saturday. The doctors have told us their goal is to get Jody well enough to be home for Christmas.
Tonight will be a good night to contact her... Watch the blog and I will let you know when it is safe to call.
We love you all... Keep Jody in your prayers! She is a fighter and we are confident she will sail through this situation in flying colors.
I will keep everyone posted...
Wednesday, December 15, 2010
Day Plus One-Hundred-Forty
While at the clinic we discovered Jody's HCT had dropped below 25 and she needed to go to the hospital to get an infusion. The doctor was also concerned about the fever she had last night, so to stay on the safe-side Doctor Bunvand wanted Jody to get a CT scan of her lungs. He also ordered a blood culture to test for any infection that may be in her blood.
The CT scan showed she had a dark area on the lower lobe of her left lung. This indicates she could have pneumonia. They will have to do several tests to determine for sure.
To do these tests Jody was admitted immediately into the the hospital to be safe. The doctors want to test to find out what kind of pneumonia she has and begin some IV antibiotics. This morning they are performing a broncoscopy to retrieve a sample of the infection.
I am on the way to the hospital, so I will post more from there.
The scope of her lung tissue confirmed it is pneumonia. They will take the sample to a Lab to see whether the infection is viral or bacterial. The results should be back Thursday.
The results came back on her blood sample they took on Tuesday. The tests indicated Jody has a bacterial infection in her blood. They are tuning her antibiotics to attack the specific bacteria. At the same time they are treating her lung pneumonia for the same bacteria while they await the lab results. They are certain it will come back with the same bacteria.
Jody is a lot more alert today and more upbeat. The doctors are hoping to knock the infection down quickly and let her go home. The estimate is anywhere from 2-4 days to 2-weeks, the latter has her more upset. Jody is (as always) ahead of the game; she has sent all her cards, wrapped all her presents and decorated the house. Everyone who knows her, knows this is probably part of the cause. By Friday we should know a lot more on how long our stay will be this time.
It is OK to call... she is in room 3211 at PSL, the same room we were in the end of October. Her room phone number is 303-839-6211.
I will post more tomorrow...
Tuesday, December 14, 2010
Day Plus One-Hundred-Thirty-Nine
Today is Tuesday and we are off for the clinic. Jody and I decorated the house and trimmed the tree. We are looking forward to a quiet Christmas. I have heard from a few of you concerning my lack of posting on the blog. Sorry... there just has not been much to say. Jody continues to improve...
I will try to bring everyone up to date.
We are now at plus one-hundred-thirty-nine. As you may recall in October we were going to the clinic three times a week. In November we changed to two visits a week and now we are visiting one day a week. During our visits the Lab checks her CBC (Complete Blood Chemistry) followed by discussing our medication usually with a Nurse Practitioner or a Physician Assistant. They make any adjustments that her CBC indicates and ask how Jody feels. It is all about how she feels.
Her immune system is still growing and all Jody needs is time. One year is typical before we can start any vaccine regiment and two years (July 2012) to get all the childhood vaccines again. The staff at the clinic keeps telling us we are not running a sprint, we are definetly running a marathon. Everything takes time to develop. Jody is frustrated and wants to begin doing things. We both want to move on with our plans of retirement, but everything remains on hold.
Last d night we had a bit of a scare in that Jody's developed a temperature. Around 7 o'clock Jody complained she was flushed so we took her temperature. We discovered it was at 102.2. Jody got into bed and we continued to check her temperatureas well as place a call to the clinic. Around 8:30 I got a reading of 104.4. Doctor Brunvand was on call and responded to our call to the clinic. He told me to give her a couple of Tylenol and continue to monitor her temperature. Finally her temperature began to drop around 10 o'clock and I fell asleep next to her. Today Jody awoke feeling rested, her temperature was still ellevated, but she felt better. Our appointment this morning is with Doctor Brunvand at 8:00. I will write more latter.
More to follow...
Thursday, November 4, 2010
Day Plus Ninety-Nine
On Tuesday, Jody and I took Papa Joe out to get his hearing aid fixed (He broke it pretty good this time, I was unable to fix it and we needed a part), afterwards we went to "Chick-fil-a" (my favorite chicken sandwich) for lunch. He loved it, a day out with "The Little-One" (Papa Joe's name for Jody) and something different. (It beats a cheese sandwich at the nursing home for lunch.) Wednesday, I caught up on the bills and finished my on going battle with the insurance companies. I also caught up on my record keeping. Jody is on twenty-eight different drugs, most of them have to be taken two times a day (some of them three times), some with food and some without. In addition, Jody receives an infusion of (one-litre) fluids with magnesium and potassium through an IV in her chest to keep her electrolytes in balance. These drugs change sometimes once a week and I maintain a record of what changes and when to be sure we stay on track.
This brings us to today. Jody is going into the clinic for her bi-weekly check-up and then it is back to the hospital for our one-hundred day bone marrow biopsy. The doctors are not expecting any change, just continued improvement of the graft. This will be the last biopsy for awhile. The next one is typically at the one-hundred-eighty day mark.
More to follow...
Monday, November 1, 2010
Day Plus Ninety-Six
Today is Monday, November one...THAT'S RIGHT one more day of political C_ _ P (fill in the blanks, hope everyone feels the same way I do... tired of it).
Jody and I are hopeful she will be allowed to come home. When I went to bed last night she told me she felt pretty good. During the night (usually around midnight) they do a complete blood chemistry, so we are hopeful all the numbers will come back good. I am waiting at home for Jody to call. So I will get off the computer and report in as soon as I get the facts. Love to everyone!
I am at the hospital with Jody. The doctors are making their rounds and have not been in to see Jody. We remain hopeful. I will let you know what's happening.
Jody has been released... We are waiting for the orders and then we will be on the road. She looks great and feels a lot better. I will write more tomorrow, unless things change
"The best mirror is an old friend." – George Herbert
Sunday, October 31, 2010
Day Plus Ninety-Five
The little women |
My best side |
We did consider Uncle Fester as some of you have suggested |
"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
Saturday, October 30, 2010
Day Plus Ninety-Four
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
Monday, October 18, 2010
Day Plus Eighty-One
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
Saturday, October 16, 2010
Day Plus Eighty
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... |
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 |
Linda admiring Jody's new "doo"... |
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...
Wednesday, October 13, 2010
Day Plus Seventy-Seven
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? |
Tuesday, September 28, 2010
Day Plus Sixty-Two
Saturday, September 18, 2010
Day Plus Fifty-Two
Here we are at "Plus Fifty-Two" over halfway...
By the way, in case anyone was wondering. We just found out that there is nothing magical about one-hundred days. How do we know? We asked... Dr. Brunvand during one of our visits informed us that the one-hundred (Day Plus One-Hundred) is an arbitrary number selected by the
doctors way back when they started the program up in
someone who was from out of town could fairly safely go home and resume appointments with his hometown doctor.
Jody continues to do well; she has her up and down days, though more are up than down. Jody and I continue to fight through the process... three clinic visits per week... twenty-five medicines to take at various times, with and without food... special trips to the hospital for nebulizer treatments, and quick
jaunts to the store for food and prescriptions. Our day is full; come 8 o'clock we are both tired, so it off to bed early. I am not going to deny it! It may be an age-issue... I know what you were thinking, so I said it.
Jody's most recent visit to the clinic was exciting. We met with Dr. Brunvand, who expressed how excited he was with her progress. He was so excited he gave Jody a "High-Five" (with me we were both so excited we "whiffed"... you know, kind of half-way between lets do a
hand-shake... no high-five... no, I am over here... uh, up here!... OH! Well... let’s just laugh uncomfortably). Jody's counts have bounced around a bit, but every time we think Jody is closed to needing a transfusion her HCT bounces back. The latest CBC shows her White Blood Cells in the normal range along with Platelets and ANC. Her HGB (Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs.) and HCT (Hematocrit is the proportion, by volume, of the blood that consists of red blood cells and is expressed as a percentage.) remain low; outside of the normal range. We have been told this is completely normal following a stem cell transplant. The red blood cells are the last blood cells to come back into the normal range.
We are hearing from a lot of you… asking why the blog is not being updated. I have been trying to get into a routine, but every time I get close I get side-tracked. I have now caught up on all of the insurance fillings and Jody is beginning to behave (my biggest concern is that she will let her guard
down)
The title of our blog is Jody’s Garden, well the garden is now gone. I have changed the garden to a fall scene she can look at from the patio. Here are some pictures of our back yard.
OK... I am having an ISSUE... None of the tools are working on the blog... I will try adding the pictures again tomorrow...