Robin Update: Where are we going next? --- April 27, 2010

Another few weeks on the Cancer Rollercoaster!!! Wow.

Tuesday, April 6th, Robin started her fourth cycle of the GemCarbo Chemo. Everything seemed to be going well; that is, except for needing the transfusions. Last week was her "Off Week" with no Chemo. The plan was to get an MRI on Monday (4/19), blood test on Tuesday, see an infectious disease specialist on Thursday, and get CAT Scans and Bone Scans on Friday. As you may recall (see previous blog entry or email), it didn't go according to plan. The Tuesday blood test turned into an overnight stay in the hospital for a near-emergency transfusion of platelets (her platelet count was 7, but is supposed to be at least 130). The next morning, her platelet count was better, but her red blood count was too low, so she had to stay until midnight Wednesday to get two units of red blood.

Picking up from the last email and Blog entry, on Thursday (4/22), I took off work a little early to take Robin to the infectious disease specialist, but by the time I got home, his office called to cancel the appointment. Connie, Robin's excellent attendant, took Robin to get her scans on Friday, and they went well except for Robin losing her lunch (and some Barium, I assume) somewhere at Christus, St. John's Hospital. The weekend went well, as Robin seemed to be recovering from all the pokes and prods of the previous week. On Monday (4/26), on the way home from work, I picked up Robin's reports, so we could read them before the Tuesday Doctor's appointment. The news was both good and bad (of course). The GemCarbo Chemo, that has been wreaking havoc on Robin's blood levels, has been killing the Cancer in her lungs. In the left lung, there was only a slight residual "density" where the Cancer had been in January. In the right lung, the mass was gone! This was Good News! There also was no indication of cancer masses in other soft tissues. The bad news was that the most of the bone lesions had grown. It also indicated more cancer in the pelvic bones. Almost all the linear measures had doubled (indicating the volumes had grown by about 8 times). This seemed pretty significant to us. Fortunately, there appeared to be no protrusions and nothing affecting the spinal cord, which is surrounded by the vertebra.

On Tuesday, April 27, 2010, at the Deke Slayton Cancer Center, they tested Robin's blood and found everything relatively normal. After the blood tests, we met with Robin's oncologist to discuss the reports. She had not yet received a copy of the scan reports, so we let her read our copy. She indicated that our understanding of the reports was correct. We spent a fairly long time discussing what we should do next. The doctor said that Robin still needed to see the infectious disease specialist, and she also wanted Robin to see a urologist because of urinary problems Robin is experiencing. (These are a real limiting factor for Robin being able to leave the house for long periods). Robin's oncologist was clearly not ready to recommend a new chemo, or even to continue the GemCarbo chemo, on the spur of the moment. She said she needed time to review past chemo experiences and do some research before progressing with Robin's treatment. In the meantime, she wanted Robin to take care of the previously discussed specialists, AND she suggested that Robin go to MD Anderson to see about alternatives, including possible clinical trials, that might benefit Robin in her fight. She said that Robin's cancer is difficult because it is not receptive to hormone therapies, and MD Anderson has greater resources available.

So this is where we find ourselves. Robin is in-between therapies, not knowing who, what, or where the next treatment will be. We have concerns about infectious disease and about urinary problems. There is significant worry about the expansion of the cancer in the vertebral bones, due to the probable pain and loss of mobility, not to mention the other bones that are involved. This is not a comfortable place to be! It is hard to remember the good news about the reversal of the lung involvement; but then we worry that, without treatment or on a different chemo, it might come back.

Thank God for all you folks who are hoping and praying for Robin. Thanks for all the folks who have called to say, "Hello," who took time to send a card, who came to visit. Some of the calls (especially, from folks she hasn't seen in a long while) have really been a boost to Robin's spirits, giving her lots to tell me about. I hope you will continue to reach out to her. Be patient, though. If you call and there is no answer, DON'T leave a message the first time. Call right back. If there is no answer the second time, then it's okay to leave a message. Robin is slow to get to the phone sometimes, and she cannot reach the answering machine. So if she's slow, and you leave a message, she has to listen to it beep until I get home. I wish we could thank each and every person who has shown Robin their love and concern by reconnecting with her. These signs provide her with an affirmation that she is loved and appreciated. Please keep up the good work. (Send me an email if you need contact information).

AND of course, please continue to keep Robin in your prayers. Know that we pray for you, as well. We also ask God for mercy and healing for ALL those suffering from cancer, especially those for whom we have been personally asked to pray.

Our love to all, and Thanks Again,

                  --- Larry, Robin, & John

Robin Update - Life in the Hospital--April 21, 2010

Robin must REALLY love the hospital, because she has been spending SO much time here.

Of course, I am kidding (I think).

On Monday, Robin came to the hospital (Clear Lake Regional) for an MRI. Because of her extreme claustrophobia, she had to be totally unconscious for the procedure, and the anesthesia turns a short visit to the hospital into an all day affair.

On Tuesday afternoon, Robin went to the Deke Slayton Cancer Center to get a blood check and a shot. Everything was taking MUCH longer than usual. We were starting to worry, and it turned out we were right to be worried! The good news was that Robin’s Red blood cell count was good. The bad news was that her platelets (which should be about 130) were at 7. They were so surprised in the lab that they checked the count again. Yep. Seven! Robin’s doctor was concerned that it was so low that if she fell, she might cause internal bleeding. So she sent Robin to the hospital for platelets. Since it was late, she couldn’t get them by outpatient clinic, but had to be checked-in to Clear Lake Regional. The doctor said she would be released in the morning after new blood tests. By 1:30 AM, Robin had finished receiving the platelets, and we finally got some sleep.

In the early morning, I went home to shower and go to work for a while. Connie, Robin’s attendant, came to stay with her while I was at work. They did Robin’s blood test and found her platelets were good, BUT her red blood cell count had dropped too low. In the past few days, we had noticed that Robin had lots of bruises. (No. I wasn’t beating her; at least, no more than usual). Dr. Larry, with his VAST medical experience, is guessing that the bruises may be where the red blood cells were going. Anyway, Robin’s doctor decided that Robin needed blood transfusions (two) again. This was before 10:00 AM, but the transfusions didn’t get started until after 3:00 PM. Blood transfusions (I have learned) are _s__l__o__w_. As I am writing, it is 8:00 PM, and she is halfway through the second (and last) unit. We are hoping to get home before 11:00 PM to sleep in our own beds.

WE SHALL SEE!!!

Thank you all for your love and support, and especially for the prayers. Two of God’s angels, Linda and Ruth, have been coming to pray with us on Tuesday nights. Last night, when they learned we were at the hospital, they tracked us down and (patiently) waited as Robin went through the admission process. When we got to the room, it was getting late, so they prayed briefly and anointed us with water from Lourdes before leaving. We have received amazing blessings from so many of you “angels“; each of you is a gift from God that helps to distract Robin from her trials and helps us both remember how much for which we should be thankful. We pray for each of you (even a few “heathens” out there) every day and hope you will continue to do the same for us.

Before I close, I’d like to ask a favor, please. If you haven’t talked to Robin in a while, consider touching base with her some time; in some way. These days, Robin seldom leaves the house except for Doctor’s appointments. Phone calls, cards or letters (I will read them to her), a visit, lunch, anything you can think of. Email me if you need the address, a phone number, her favorite color, anything…. If you don’t really know Robin personally, you probably DO know someone ELSE who is sick; call THEM. With long term illnesses, it is easy to become somewhat isolated, losing some contact with the “outside world.” As the old Bell Telephone ad went, “Reach Out and Touch Someone.”

I’ll close for now and try to send more soon. As I said earlier, Robin had an MRI on Monday. She has an appointment with an infectious disease specialist tomorrow afternoon (Thursday, 4/22) and she will be getting CAT Scans and Bone Scans on Friday. Robin will discuss the results with her doctor on Tuesday, 4/27, so I’ll try to let folks know something after Tuesday.

For now---

      Love from us both,

            And God Bless You,

                  --- Larry and Robin