Syed Is Home

Hi everyone,

Syed is back to receiving glowing reports from his doctor. This morning, his doctor came in and told Syed he can be released from "jail". The wonderful aspect to Syed is, he never thought being in the hospital was in any way restrictive. Quite the opposite. Syed actually preferred to be cared for properly so he could be assured that he would make a full recovery and feel confident about caring for himself at home. This is why Linda and I both have such an easy time helping Syed with his medical care.

Tonight, Syed will be staying with Linda at her home. While he is almost 100%, he still feels a bit "wobbly" as he puts it and prefers to have Linda watch over him just in case as Linda has truly learned all of Syed's signals, if you know what I mean.

While I may post the updates and try to keep everyone informed, Linda has been at Syed's side throughout all of his chemo treatments over the past few months--driving him to and picking him up from each appointment, dealing with the hassles of Medicare to ensure his medication is ready on time, and keeping Syed on track with each step of his treatments. While some people may become overwhelmed by taking on such a role, not Linda. She is there, by the side of Syed as a true friend, truly loving to help in any way possible. Thank you Linda!

Have a great weekend everyone,

Caroline

Almost Back To Normal

Hi everyone,

Syed is feeling much better this morning, however, he is still a bit "shaky," as he puts it, when he walks. The doctor thought he should be able to go home tomorrow, however Syed is a bit concerned about returning home too soon since he doesn't feel his strength is 100%. The doctor told him that they would wait for an evaluation from the Occupational and Physical Therapists to determine what rehab he might need. The therapists will assess his ability to take care of himself at home and it sounds as though if they determine that he is not strong enough to return home, they may recommend he stay in the hospital a few days longer.

I'll be in touch soon as Linda or I learn more. Thank you for all your support.

Caroline

Round 5

Yesterday, when Linda went to pick up Syed from his treatment, she learned that Syed had a reaction to the infusion. He became short of breath and suddenly, physically weak. Linda and the doctors thought it best he be admitted to the hospital for the sole purpose of monitoring.

Linda then followed the ambulence to the hospital. Once Syed was settled into his room, within the hour, she was releaved to see his breathing return to normal. He still had difficulty talking, however. Syed typically has difficulty talking after each treatment.

This morning, he seems to be back to his usual self but just a little tired from the experience. The doctors decided to keep him in the hospital one more day. Linda and I are very confident that he will be returning home tomorrow.

For the moment, he will not be taking phone calls (I actually have his mobile phone) so he can thoroughly rest. I will be talking with the doctor directly to find more details about the reaction and discuss next steps. I will send out another update this evening.

All the best and Syed truly appreciates your support.

Caroline

Not Quite Round 5

This week, Syed went in for Round 5 and his doctor placed it on hold for a week. Syed's white cell count was too low. Syed will try again next Tuesday, November 2.

Not sure if you all recall but here's what happens when Syed goes in for each infusion. His blood is tested before every infusion so that his white cell count can be assessed. When the white cell count is too low, people can become more susceptible to various types of infections and viruses. Overall, the immune system is not as strong.

When people go through Chemo treatments, the immune system becomes comprised over time. It is expected that at some point during treatments, the white cell count will be low. When this occurs, infusions are skipped until the white cell count reaches a sufficient level.

In the meantime, Syed is his usual energetic self---went to the Farmer’s market yesterday, goes on regular walks around the neighborhood, and of course sees a movie from time to time. We’re actually going to a movie tonight, Linda, Syed, and I.

Chat with you all next week.

Caroline

Round 3.5

Hi everyone,

My apologies for the delayed post. Syed had, what I’m naming, round “three and a half” of chemo this past Wednesday. I’ll tell you about why I call this round 3.5 in a minute. First, you must know that Syed’s doctor’s continue to be astounded by how well Syed’s body is reacting to the chemo overall. Like all patients, he has had some side effects but nothing that has impacted his energy level, positive attitude, and of course, his smiling face. While I’m thrilled and somewhat surprised, I’m truly not overly surprised that he’s reacted so well. I’m a huge believer in attitude and the power of the mind (learned it from my grandmother). His positive easy-going attitude is the key ingredient to approaching and dealing with life’s challenges and the challenge Syed is facing today is one of the greatest the human body can endure and he is doing absolutely fabulously.

Now, maybe you’re still wondering why I’ve named this round of chemo 3.5. Well, due to the policies of Medicare, Syed was not able to receive his oral medication in time. As I posted last month, Syed completed the infusion but when Linda went to pick up his medication, she discovered that some paperwork was missing and therefore, the medication would not be covered. I had thought that maybe Syed could cover the cost until the paperwork issue was resolved, however, we then discovered that the cost was beyond excessive, $2,000 per bottle. So for round 3, Syed only had part of his treatment, the infusion, skipping the other half, his pills---hence, round 3.5 J.

I promise, either Linda or I will post the full story about what happened. It’s quite detailed and I’m not able to do that right now. What I will tell you though is that Linda truly worked tirelessly to get all paperwork submitted and delivered Syed his medication a week ago. Going forward, he’s all set.

Syed’s next round of chemo is scheduled for October 27.

All the best to everyone.

Caroline

In Janice's words

My friend Janice Williams and a former co-worker at Mostek Corpn, Dallas, TX sent me this note and wanted me to post it for her.

In a message dated 9/2/2010 8:38:15 A.M. Pacific Daylight Time, trulysheek@aol.com writes:
have known Syed for more than 30 yrs. He was my manager here in Texas for many years. I have always held him in high esteem, and I still seek his advice when I need to make a major decision.

I'm sooo happy to see that the recovery is going well. Syed, I truly believe that you are fulfilling your purpose here on earth, because you have had such a positve impact on the lives of so many people and animals. Compassion is a gift.

I thank you for being a part of my life, for it has been enriched. You are an example for me to follow. I'm still working on becoming a vegan, but as you know, Texans are natural born carnivores. :)

I wish you peace, happiness, and a long life. Hang in there, we all need you.

ALLAH tara bhala kara.Janice Williams

Round 3

Overall, Syed’s second round with chemo was without significant issues, which is fantastic. His energy level has been exceptional. He still goes to the movies from time-to-time, walks to town for coffee, and shopping at the farmer’s market—as expected, when Syed was in the hospital, turns out a vendor at the farmer’s market was thrilled to see him after about a months time. When she learned of his cancer, she’s been “filling him up” with really good veggies—not surprising that Syed has people that care about him wherever he goes :).

Just before starting his third cycle, Syed did start to experience slight toxicity. It started showing in very subtle ways. His skin has started darkening and then the tips of his fingers and toes have slightly discolored and then he’s experienced some irritation in one of his toe nails that is now going away. As Syed puts it, “my doctor says these side effects are more of an inconvenience and that’s exactly how it feels to me.” The great news is, nothing that Syed is experience is serious or in any way will impact his health long-term. His doctor continues to be wonderfully surprised at how well Syed is doing overall.

Wednesday, Syed started cycle 3 with an infusion. Since the infusion, Syed has been doing great. He’s just run into a complication with Medicare, an issue Linda has been working tirelessly to resolve. Medicare is refusing to cover the chemo pills (the pills Syed takes after every infusion for 2 weeks) because Medicare shows that Syed was never released from the nursing home. Not sure if everyone recalls but Syed stayed in a nursing home for about 2 weeks after he was released from the hospital.

Linda discovered that the nursing home never provided Syed official release papers from the facility. In order for Medicare to cover the chemo prescription, they must receive proof that Syed was officially released from the nursing care facility.

Well, at the second round of chemo, Linda took charge of getting all of Syed’s medication. In the process of picking up his prescription, she learned that Medicare required these papers before they would approve the prescription of chemo drugs. She spent two days or more working to resolve the issue. Medicare seemed to be satisfied with the paperwork that she faxed. They approved the prescription and Syed started taking the pills.

Well, this past week, Medicare once again denied coverage for the chemo prescription. They stated to Linda once again that they needed proof that Syed had been released from the nursing home. Since Wednesday, Linda has been working tirelessly to resolve this issue—talking with the nursing home, talking to Medicare, contacting the doctor’s office and overall, just running around in circles. Linda almost has this situation resolved. Monday, Syed’s doctor from the nursing home will sign the “official” release papers, give them to Linda. Linda will then fax them to Medicare, and then she can finally pick up Syed’s medication.

I share what’s happened with all of you so that everyone is aware in case you run into a similar issue—hopefully you never have to experience any of this. This is a true example of the red tape that one must follow in order to get the coverage due from Medicare or probably any insurance company for that matter. My hope is for everyone to understand the issue and learn from Linda’s experience. Of course, I’m just providing highlights. Linda can provide more details if anyone is interested.

That’s about it for now. I’ll post the final results from the Medicare issue shortly.

All the best to everyone!

Caroline