Good day - and night

Another easy day with just a blood draw on the schedule. Did go up and get checked by a doctor though since I developed a rash near the Hickman. They didn't see it as a problem - just something to watch. All is good! Enjoyed a great dinner and great company with Mary and Don (with his famous lasagna), Brian, John and Connie (with homemade bread and brownies). Nice, laid back evening. Great day and night!

Easy Day!

Today was a breeze. Jane drove me to SCCA for a blood draw and that was it! The body is feeling much better with the end of the growth factor shots.

Another data review

Met with the nurse from UW today that runs the isolation room. She was able to answer my questions which included: can I take in books and needlework - yes but they will be contaminated and have to be held for up to six months until they are no longer radioactive. Can I take in my laptop - yes, but it has to be wrapped in plastic, cannot be on my lap and I have to use gloves. How does my food get into my room - there's a lead lined doorway that they will put my food into and I will pick up. One interesting thing - anything that comes in my room stays in my room until I leave including garbage. So any food I don't eat, I have to put in a Ziploc bag (which I have to provide) and keep it in a open garbage can in my room. With all the extreme cautions we have to take in keeping my surroundings bacteria and germ free, it just doesn't make sense to me to keep garbage in my room for up to two weeks! Let's hope the radioactive stuff leaves my body in a timely manner. The nurse did bring pictures of the room and that was helpful for me mentally. I was also told there would be a exercise bike in my room but that's not quite true. There is one exercise bike available to the two isolation rooms but it is a first come first serve basis. So if the other room is occupied the day before me and they want it, I guess I'll just walk circles around my room while watching a VHS movie (they only have VHS players) to get my exercise (which they strongly encourage you to get plenty of exercise!?!). After the nurse we waited for 45 minutes (after my appointment time) for the doctor to arrive to go through the data review and sign consent forms. She explained all the forms but unless you're a doctor, it's hard to keep up and follow along. I think I got it all and signed the forms I selected.

10.5 Million stem cells - We're there!!!

NO MORE SHOTS!!! Had my last three growth factor shots this morning for a total of 30 shots in my tummy over the last 5 days. Thankfully I no longer have to watch the nurses wind up and stick me then inject it slooooowly. Don't want to ever have to repeat that! Received more platelets this today as my numbers were again low. Then it was off to apheresis for more collection. The doctor came in and said today would be the last day and that we were really close to the goal. My body feels good but I'm very tired tonight. Heading off to bed.......

Collection - Day 2

Showed up today at 7:15 am, waited for blood draw. Got to infusion at 7:45 to receive platelets and - SURPRISE - 3 more growth factor shots. I feel like the shot up cartoon character who drinks a glass of water and it all comes out of the holes in his body. Up to 24 shots and my tummy is bruised and showing the grief I've put it through. After the infusion, I was back at apheresis (collection) to spend another 5 hours on the machine. Got home around 3pm and waited for them to call me back to let me know if I had to get more shots tonight and do more collection tomorrow. The call came in at 7:30pm that I needed more so off we went back down to SCCA to get poked 3 more times (up to 27 now if you're counting). Yesterday they collected 3.9 million cells, today it was 3.7 million. They want to collect between 8-10 million stem cells from me so back down for another day tomorrow. We're "close enough" but it would be best if we had a few more. Since I have no plans of getting another 30 shots of the growth factor, we decided just to go in tomorrow and collect the additional amount needed. Did get to talk to the nurse who is in charge of the isolation rooms at UW and she was able to answer some of my questions. I will actually get to meet her on Thursday when I have my next data review.

Not enough :(

Arrived bright and early (7:30am) at SCCA for my stem cell collection day. I've been told this can take anywhere from one day to a couple of weeks. It all depends on how much the body is putting out. We knew that they were going with the high flow collection today and hopeful it would be enough, but it wasn't. I received yet another three growth factor injections (now totalling 21) and then they hooked me up to the machine for collection. One great thing about the Hickman is I didn't feel a thing! Just had to try not to watch my blood flowing out in the tubes, through the machine, then back in all day. Finished up feeling pretty good, but still stiff in the bones. They called this afternoon to tell me it wasn't enough and I get to go back tomorrow. However, I don't have to go back for more growth factor shots tonight (they will give them again in the morning). Let's hope they get enough tomorrow!

Bone pain!

Got out of bed for my morning visit today and OUCH! The bones are definitely talking. Rib bones, pelvic, breast and head all are feeling the expansion in the marrow. Think of it as just nasty flu-like aches but pretty much limited to the bones. Definitely moving slowly today. Tired of getting poked - between Friday, Saturday and today, I've been stuck 18 times in my tummy (they have to inject the growth factor in fatty tissue and I was able to supply plenty). Hopefully after the six shots tomorrow it will be the last day of those injections. On the good side, my white blood numbers have skyrocketed - literally! That's what we were hoping for. Plan for tomorrow is to try to collect the entire amount of stem cells. Could take up to six hours to complete the process. If not, I go back on Tuesday, Wednesday, Thursday and Friday to keep collecting until I have enough.

First weekend visits

After yesterday, today was pretty uneventful. Did my twice daily visit to receive my growth factor injections. Same thing tomorrow. The nurse I had this evening told me some of the people she had met or heard came thru SCCA: Jonathan Lester (baseball player), one of the Rockefellers, Jose Carreras (one of the three tenors), visits by Fabio (make a wish visit) and Ringo Starr (visiting his ex-wife). Monday we start bright and early at 7:30am with the collection of my stem cells.

SCCA knows the Taylors

Wow! What a time we had today. Jen drove me to SCCA. Marc, Sharon, John and Connie met us there to attend my first appointment which was instructions on how to maintain my Hickman Port (the tube coming out of my chest). After my blood draw (which no longer requires me to get poked) we all piled into the elevator for the trip to the transplant clinic. As we emerged from the elevator, Jen felt dizzy and sat down in a chair. Within moments she had passed out! After what seemed like an eternity, the medical staff surrounded her and started taking her vital signs which were quite low. Thankfully, she woke up on her own and they took her in a wheelchair to one of the exam rooms. Several blood pressure readings later, she was finally starting to stabilize. However, they kept her lying in the bed in the room next to me for my entire time there. Thank God Connie came and was able to stay with Jen and keep things under control in her room. The rest of us went to my room next door and started with the instructions. LOTS of stuff to go over and remember and it seemed a bit overwhelming but I thought we were doing ok.....until my cousin felt light and needed to take a seat for a few minutes. Thankfully, it was within seconds before we had her back and she recovered quickly. Next, Marc and John were given instructions on how to give my growth factor shots at home to alleviate two daily trips down to the clinic for the next several days. With all the excitement we already had, they scrubbed with the cleanser and were filling their needles when Marc poked himself in the finger with the growth factor. That was about the time we decided that after the events of the morning, we would gladly let them give me my morning and evening shot. So we finished up there, Connie took Jen's car home, Marc resumed work, and John took Jen and me to her doctor to get checked out (per the clinic's instructions). We spent two and a half hours at the doctor while they ran her through all the tests and they all came out clear. She's fine but had to spend Friday night at home with us. Got to be home for a hour and a half before we were on the road to SCCA again for my evening injection. I'm beat, but feeling good. Too much excitement for one day - don't ever want to repeat this one!

Meet Mr. Hickman

Today I learned that the port/cathetar I was having placed is actually named after a real doctor who invented the device and who also practiced this procedure in the room I was being worked on. His name is Dr. Hickman and he placed many of these devices in many patients up until he retired at 83 two years ago. That said, I had my Hickman placed in today and all went well. The doctor was fantastic and my nurse, PJ, explained everything in detail so there would be no surprises. She was unlike any nurse I had experienced here before and also she's a two time cancer survivor. Like the bone marrow biopsy received previously, I was sedated and went home and slept for several hours. They have me minimally covered in gauze and tape so I can't actually see the incisions. I can't feel where the port comes out, but I can feel where a small incision was made on my neck near my jugular vein. They use this area to make the turn to get the tube down where it needs to go. Because there is a large major muscle there that they usually have to mess with, it's a little tender, but expected. Just feels a little tight and like I slept on my neck crooked. All in all, I'm feeling good and expect to sleep well tonight.

Data Review

Today we met with Dr. Holmberg for our data review. Looking over all the tests, it appears I am quite healthy - with one small exception - Lymphoma. No big surprises - healthy heart, liver, good, lungs good and CT scan all shows good. So now we move forward and I get my Hickman cathetar put in tomorrow. I'm not nervous about the procedure of putting it in, but I'm concerned about the care required afterward. No one on my medical team is at all concerned about this but I have my reservations. According to them, life should continue as usual and I will have minimal limitations. The good thing about todays visit was that my schedule only changed three times in the two hours I was there! Unless I get a call with a change in the wee hours of the night, my appointment for tomorrow is at 9:30 am. Looks like I will be there every day from here on out until I get admitted to the hospital and some days it will be twice a day. Thank God gas prices went down!

"Vacation"

Got the call that my data review is next Wednesday so they must have gotten confirmation from the insurance company. Thursday I'm scheduled to get my line placement in my chest/shoulder. After that it's rock and roll. So I'm on "vacation" with no appointments until next week. Celebrate!!

Tuesday, January 13, 2009
Education
Todays is the only day with appointments scheduled at SCCA this week (so far - always subject to change). Since I broke another tooth last night, the day started with a trip to oral medicine to visit with the dentist. (Chemo must weaken the teeth since I've never broken a tooth in my life.) This man is very good at explaining things but obviously doesn't have much respect for time. Same as last week, for a 5 minute appointment it took me 50 minutes to get out of his office. I was supposed to take the Food Safety Class at 11:30 am but ended up catching the last 10 minutes of the class after I was released from oral medicine. Thankfully, Marc, Jen, Sharon, John and Connie were able to take the entire class so they got the full scope. The class was basically how to prepare my food, what I should avoid, and how to keep me healthy. Then we were off to the transplant clinic for my weekly visit. Again, after waiting 20 minutes, I had to go to the desk to let them know I was supposed to be in another class at 1pm so I was really hoping to get in for this appointment. All went well except the blood pressure was a little high for me - Go Figure!!! Marc and I made it to the Managing Home Care class only 15 minutes late. Again, Jen, Sharon, John and Connie were there for the entire class and hopefully able to absorb all that this will entail. Soooo much information - hope we get this all right! The insurance company called on my way out the door this morning and have approved my transplant (thank God). As soon as SCCA receives written confirmation, a data review meeting will be scheduled with my team to go over the findings from my tests. Then it's full speed ahead!

Friday, January 09, 2009
Only one appt today
As part of the protocal for my study, all CT and PET scans have to be done at First Hill Medical Center for continuity. So today I had a "field trip" and got to go there instead of SCCA. Barb and Jane came over and took me to my appointment which was great. Got to visit with two special friends and laughed a lot. They dropped me off with Marc at the warehouse and we went to a shipyard and unloaded and stacked three pallets of filters. Looks like I've had my last test. Next week is caregiver training and food safety classes and data review. If I pass all the tests, then it's time to rock and roll!

Thursday, January 08, 2009
Long frustrating day
The rain and flooding made for a hour and a half commute to get to SCCA for a 8am appointment. Today we started off in oral medicine for a exam. Dentist was half hour late coming in for my exam which set the tone for the day. Next came the mammogram to which I was a half hour late! Go figure. After sitting in the "holding cell" (waiting cubicle) for 25 minutes, I poked my head (and minimally dressed body) in the hall to find out when they planned on making this procedure happen since I was now 15 minutes late for my next appointment. Shortly thereafter, I was wisked in and 30 minutes later, was on my way to my next appointment with my nurse (who isn't really my nurse because my nurse is in Cancun). After that was said and done, I was off to do pulmonary testing which was kind of bizarre. Lots of blowing into the machine and holding my breath until I was almost blue! Off to the last appointment - a MUGA (heart) test. Done at 3pm today - BUT - realized during the day that my CT scan scheduled for Friday was totally screwed up thanks to my incompetent scheduler so had to take that matter into our my own hands. Ended up extending our day by driving over to where this procedure was to be done and working with their staff to get things done efficiently. By now it was raining again and it only took us another hour and a half to get home after all the detours. Frustrating day :(

Wednesday, January 07, 2009
Another Visit
Today was pretty much uneventful. Met with the gynocologist today - fun - then with a social worker (waste of time). Felt like I was being analyzed by a stranger who was gaining knowledge about me that was quite personal and, in my opinion, did not pertain to the transplant. I guess they need to know your background, frame of mind, and relationships to get the full picture. Probably beneficial to some, I felt I had better things I could be doing. On a high note, Kerry (my Physicians Assistant) stopped by me and whispered to me that my spinal fluid was clear! That means I passed another hurdle. Tomorrow is a full day starting at 8am and ending at 4pm. Hope it's productive!

Tuesday, January 06, 2009
More Tests
My brother-in-law John had his first visit to SCCA yesterday as he was my designated driver to have a bone marrow biopsy and a spinal tap. My buddy Tim was not available to start my IV and take my blood so I got someone different who, naturally, had some difficulty getting my vein stuck. The procedure went fine and they prescribed soda pop for me to drink as the caffene is supposed to greatly reduce or eliminate the headache caused by the spinal tap. I hadn't had pop in quite a few years so this was a bit weird for me but evidentially it worked as I haven't had a headache. My back is fine except for the three holes they put in it and I can move pretty well, I just have to remember it's there and be cautious. Marc was there when I woke up and I really don't remember the ride home but he's very patient about letting me repeat myself and my stories over and over. Didn't write yesterday because it probably wouldn't have made any sense. Off from SCCA today, but back bright and early tomorrow. Oh what fun we are having!

Friday, January 02, 2009
Transplant preparation - Visit 2
Whew-hew here we go! Today started at SCCA with a visit to the Oral Medicine floor for the baseline Xrays. From there I went to radiology and had a Xray of my chest, then onto visit with the nutritionist to tell me what I already knew about eating healthy. Next appointment was to see the Finance Representative followed by a EKG. The day ended with a conference with the attending doctor but I don't really know why I met him since he will only be on rotation until next Wednesday when I get to meet the next doctor. Scheduling wasn't too bad - not too much lag time today and we accomplished all six of these appointments within a four hour period. We were able to visit two possibilities for housing during my "free time" today. Still looking. Scheduling for next week was kind of ugly but after I threw a hissy-fit, it all worked out just fine. Marc was very tolerant and patient throughout my episodes.

Wednesday, December 31, 2008
Transplant - Day 1
Lets end the year with a new beginning. Today we met with two of my people on my transplant team - Kerry and Dot. Again we started with confusion about where I was to go and when I was to be there, but it all ended well. Tim again drew my blood (he's the best), but my vein decided to not cooperate after the 6th vial. Had to poke me again! Almost passed out but recovered quickly. Get to have tomorrow off - sort of. Have to read the consent forms (all of the pile which is about 1 inch thick) before next visit on Friday. Happy New Year!