A New Part of the Journey

I write this passage while sitting next to the hotel swimming pool, watching my sons and wife enjoy the water. We are at a hotel in Minnesota, but for how long I do not know. We have now arrived at Rochester, the home of Mayo Clinic, where I am to participate in a new drug trial using a mono-clonal antibody which has promise for sarcomas, and in particular the type afflicting my body. This brings a time of renewed hope; but also uncertainties and adjustments needing to be made. At the same time, while watching my family swim, I wonder how much longer I will have the privileged of doing so. It is impossible to not have such thoughts; if one is honest and willing to admit it.

This past week started with my leg pain increasing again; after a time of decrease. The increase in pain was associated with new swelling in the same area, but also in an area next just next to this. It got to be so problematic, and worrisome, that I went to visit my oncologist on both Thursday and Friday for advice. By Friday, I was sure that this will require surgery to remove whatever is inside. The MRI and radiologists report was uncertain of the cause, but advised to consider it a recurrence of the same cancer until proven otherwise; which was the same language my doctor was using in trying to listen and treat my problem. However, treating it as cancer brings up many complications and concerns. It became apparent by Friday that there was little which could be done at my local hospital, if surgery was required; as the problem appeared to be very specialized. I was just advised to take pain killer and get to Mayo Clinic to meet with a surgeon.

However, on Friday afternoon my doctor was able to refer me to visit with an orthopedic nurse who has many years of experience and works closely with the orthopedic surgeon at my local hospital. It turn out that she was much more informative and knowledgeable about the situation for the leg, than the oncologist / radiologist had been. After describing the symptoms to her, and showing the area of swelling, she immediately diagnosed a "seroma", or serum (fluid) accumulation in the suture site from my previous surgery. The swelling, up and down, and tightness, as well as muscle pain surrounding, was classic for this type of problem - often seen in areas of major surgery of the legs. What is really required is drainage of the fluids and pressure wrap to prevent future build-up. She advised to take a different pain killer and anti-inflammatory drug immediately, and wrap the leg to prevent further fluid accumulation. After following her advice, I immediate got relief, both physically and mentally.

All of this made much more sense, considering the circumstances over the past 6 weeks with this problem. How could it have a tumor origin and be growing so substantially during my last 2 chemo rounds, when at the same time we had measurable proof that those same chemo rounds have inhibited the tumors in my lungs from growing at all ? How could it be of tumor origin if it reduced and became soft for a period of time ? I really suffered from worry over this for the past weeks, because any need for surgery on my leg would prevent my participating in the new drug trial on time; and thus give the tumors in my lungs a chance to renew growth and gain size quickly. On the other hand, any rapid growth of tumor in that area of the leg, without being addressed quickly, could develop complications that would require amputation. How does one chose between protecting your lungs or losing your leg ? Surely timely decisions and direction could prevent such a decision from being necessary in the first place ? But what is that timely decision ? What type of dilemma is this ? I have been concerned about this choice coming on for a long time, and searching for reasons why God is placing such obstacles to my participation in this drug trial. It is good to realize that my leg issue may be easily treatable, and we can indeed participate in the drug trial on time ("Oh ye of little faith").

All of these concerns over the past week have led us to the decision to arrive at Mayo Clinic much earlier then the original schedule. We have realized that my future treatment lies here at Mayo Clinic, and if any complications arise they need to be addressed at Mayo Clinic so that everything can be coordinated (drug applications, leg treatment, any further lung issues). We will not have to live in this town, but while I get treatment for my leg and start the first round of drug treatment, we may have to stay in this area for about 3 out of 4 weeks. After that, it will just be coming for follow-up treatments and scans, then driving back home. The drive is about 7 hours on good highway all the distance; so it is reasonable.

A bit more about the new drug I will be taking. This is a Phase I trial, which means that the drug will be give in every increasing dosages, until it is determined that further increase is dangerous to the body. This means that I may be at considerable risk of overdose or damage to my system. But on the other hand, I may also benefit by having my cancer slowed or stopped. We have chosen this trial specifically, because of advice from many leading oncologists and pre-clinical evidence that this drug strategy can be very effective against my rare tumor type. Gaining a cure or removal of the tumors is almost too much to hope, but it is also possible. Normally these types of antibodies (those approved for market) are given along side of traditional chemotherapy; and the supplemental approach proves most beneficial in removing the cancer. This option will not be available to me; so we will have to live with whatever benefit the antibody brings on its own. Again, if it slows or stops my cancer from growing, like my previous chemotherapy did, then I can take it for an extended period of time (theoretically, one could take such an antibody indefinitely - as it would have less adverse effects than traditional chemotherapy). However, I am running out of chemotherapy options, and my body is tired of this; so it may be a blessing.

I feel God's guidance in bringing us to his place, at this time. We were led by the advice of many doctors to this particular drug trial. A friend in India sent me a list of trials being undertaken at one cancer center in the US, which I submitted to the daughter of a friend who happened to be a doctor at an allied hospital. She was able to get immediate response from the drug trial coordinator at that center, who informed us of this new drug trial being started at Mayo Clinic immediately. When we looked up this drug trial on the Internet, it was clear that the participating research clinics were recruiting males with my rare tumor type. My local doctor then referred my case to Mayo Clinic, and I got a call with offer to participate. At the same time, we had been informed of this new drug concept by my original doctor and surgeon in NY; but they did not have he trial to offer. We found out which companies were making these drugs (3 of the major pharmaceutical companies are involved), and Usha contacted a former Head of one of these companies whom she knows. He immediately got information sent to us, from research leaders involved. From all of this information, it was clear that this was my best option for a next step in trying to bring my cancer under control.

As I don't believe in chance occurrences, I am lead to feel a reason behind our presence here; and hope so see God's plan in the coming weeks and months. We are praying for a smooth first application during the upcoming week, and guidance thereafter; as well as growing faith in what is to come. I know that many of you are also praying for our health, well being and God's peace; and I sincerely thank everyone.