3/2/11 Hold Your Horses!

Springtime in Houston is just lovely. The warm temperature along with gentle breeze makes one swoon as you step outside into the fresh air. Since our appointment will Dr. Romaguera was not till 3:30 PM we decided to go to Memorial Park with Max. No forest trails for us today after our last adventure where we had no idea where we were and walked what seemed like forever! We stayed on the perimeter of the Park where the jogging/walking paths are quite wide about 10 feet of clear well packed dirt. There were so many people enjoying the gorgeous day. On the other side of the road was a bike path which is paved which was also shared with line skaters. Our goal was to walk 60 minutes. Joe would have to take three breaks of a few minutes each to sit on a bench to rest a bit. I cut the walk to 50 minutes since I could see that he was at his limit. For the last 10 or so days Joe's appetite has decreased by two-thirds so his body does not have the fuel to walk very far. I am proud of him for trying and pushing himself. He loves walking with Max and me while getting some wonderful fresh air.

Goley Richardson came and retrieved us from the Lymphoma waiting room which had very few patients and caregivers in it today. Goley had her left arm in a sling. Last week she was in an automobile accident with her Explorer with one of the monster Pick up Trucks that Texans love and drive like maniacs. Thankfully she has just dropped her daughter at ballet and heading home and BANG! She broke her clavicle in several places and had a huge gash in the back of her head that is being held together with staples. She will need surgery to repair some of the damage. Goley asked the 100 questions on how are you doing today! She answered several questions for us but she says to ask Romaguera also.

As usual Dr Romaguera greeted us both joyfully with that kind concerned look of his. He says that he got Dr Torres' report that he advises to hold off chemotherapy for another two weeks on Joe. He reiterated that Torres thought Joe had a fungal infection. Romaguera stated if Torres says to not to go forward with chemo then one should not. He stated that Torres is not a cautious type who in most cases he tells Romaguera to go ahead with chemo on the patients he refers. Romaguera concurs that it could be fatal if Joe started chemo again before the infection clears. Five percent of chemo patients die from infections.

We discussed Joe's consistently elevated White Blood Cells with most of them being Neutrophils. He believes that the reason they are staying high is because of Joe's other incurable disease, myelofibrosis. He measured Joe's spleen and it decreased slightly from 18 cm to 16 cm. At least it is not getting bigger. He also believes the enlarged spleen is from the myelofibrosis. Romaguera said that he was more concern over the therapy period that Joe's spleen would rupture but thankfully it did not. He says the spleen is doing the work of the bone marrow that is scarred. I brought to his attention that Joe's platelets took a huge drop from 180 to 86 in two weeks. He expressed concern about that and said that we need to investigate the cause of it. Romaguera said it could be a lab error so he would send us to the second floor Diagnostic Lab for a blood tests and a urinalysis since I also expressed concerned that his blood urea nitrogen and creatinine levels were both high. I had also asked him about the three immumoglobulin levels being low. He said that is true with patients undergoing chemo and not to be concerned about it unless Joe were to have re-occurring pneumonia episodes. Romaguera told us that we should not leave Houston until he finds out why the platelets went down so fast. If the CBC test was correct on the platelets yesterday, he would want Joe to have bone marrow biopsy. He told us to stay put till he calls us. He also advised us that none of the numerous tests showed any lymphoma anywhere and holding off for two months is not going to put Joe in jeopardy of going backwards in fighting the Mantle Cell Lymphoma. He will discuss Joe's blood counts with Dr Torres to see if any of the three infection fighting drugs he prescribed would cause any of the blood counts to be abnormal. So as of right now we are staying put because we trust Dr Romaguera's assessment.

As Joe was getting his lab tests drawn, I went up to the 1oth floor pharmacy to pick up the drugs that were called in yesterday that we needed refills on. Joe finished up the lab draws at about 5:30PM when we went up to the 8th floor to the Infusion Clinic. When I changed Joe's dressing today around his PICC line, I noticed the stitches had come loose. During the classes back in October they told us to come back if the stitches came loose. Since it was late in the day, there was not many people waiting so we were able to get in there quickly. The male RN was a sweetheart and recommended that I go to the front desk and ask them to order new PICC kits for me since the ones Emory uses are harder to use. He said that I needed to do it quickly since the medical supply room would be closing in 10 minutes. So I got the order from the front desk and headed to the first floor to get the medical supplies. Again since it was late in the afternoon, there was only one person in front of me so it was handled quickly. I was back up on the 8th floor as the nurse was giving new stitches on Joe's arm to hold the PICC line in place. Joe bled quite a bit so that means the low platelet count of 86 from yesterday is correct thus Romaguera will be scheduling Joe a Bone Marrow Aspiration to find out what is really going on in his bone marrow. The nurse told me what to watch out for tonight on the bandages and to flush the lines again later on tonight.

We did not get back to the studio apartment till 7:45PM. Joe was totally exhausted that he could not keep his eyes open and kept having jerking movements while sitting on the couch as he was falling asleep. It is a bit nerve racking for me to watch the jerking since I am so afraid that he will go into a seizure. I convinced him to go to bed where he would be more comfortable and that I would wake him up at 11PM CST to give him his important evening medicines. I changed the two plugs on his PICC line and flushed them. Thankfully his bandages were not bloody.

So here we are still in Houston, we listen to the messages that were given to us. Although we would love to be home even for a few weeks, it may not be in the cards. I just will have to figure a way to escape that is not too hard on Joe's stamina. Right now he is sound asleep on the bed with Max laying at the foot of the bed next to his buddy. It is so sweet to see.

Thank you all for the continued prayers and kind thoughts. You are all wonderful and have given me the strength to see this through. Praise be to the Lord and may He watch over you and your loved ones. May He comfort you in the time of need.

Ciao,