Fever! I got a fever.

Last evening, after we had returned from the infusion room, I felt a little flush and decided to lay on my bed and read. As I went to the bedroom, I felt chills although I was dressed warmly and the house is heated. As the thermometer was on the bedside table, I decided to take my temperature. It was a surprising 100.7. I checked again in thirty minutes and it was 100.9. By 10:00 pm, it was 101.

After Infusion 2 of Round 1, I had been asked to report to the Emergency Room if my temperature exceeded 100.4. Although that didn't happen after Infusion 2, I decided to visit the ER nonetheless. Upon arriving at the ER, my temperature was 102.2 and my blood pressure was an eye-opening 105/44. Yikes!

The nurses and doctor at the ER tested everything; blood, urine, x-rays and then blood again! I was given Motrin and an intravenous drip of, I assume, saline solution, and was told that they'd need to call the hematologist for instructions. After quite a delay, and checking my temperature and seeing it at more or less normal, I was released.

I had hoped that there would be fewer and less severe side effects in this round of chemotherapy. I hope this will be the last of it, at least until Round 2 in January.

Infusion 3 of Round 1

We traveled to the edge of Big City to have infusion 3. My appointment was at 4:30 pm. After I graciously thanked Nurse K for their thoughtfulness in scheduling every appointment to coincide with the worst of the Big City rush hour traffic, she took my vital signs as always. Of slight concern was my blood pressure, a surprising 115/47.

After my compliment, she used her emory board to dull the needle (just kidding) and administered one subcutaneous injection. It was over in ten minutes.

All in all, I feel very good. My next round starts January 6.

I am glad to have round 1 behind me before the Christmas season and all the eggnogs I intend to consume!

I hope you all have a great holiday season and please keep those positive vibes coming my way!

Infusion 2 of round 1

I hit a small speedbump in my ongoing infusions. First of all, After Infusion 1, We returned home in Big City's horrible traffic and when I went to bed, my stomach felt queasy. I awoke several times during the night feeling nauseous. I had an unpleasant, restless sleep with a churning stomach.

Remarkably, I visited my local drugstore to pick up a prescription refill unrelated to my lymphoma. The clerk reported that they also has a presciption to give me that was ordered by Dr. Hema5 (or is he #6? I've had so many). He ordered it December 2. I asked what it was for and she said it was for nausea. In the famous words of the warden, "What we got here is failure to communicate."

I next reported to the infusion room again for a presumably short infusion of one of the two chemicals I am being administered. It went smoothly at first, and the infusion was done in 15 minutes.

Nurse R has this funny thing she does, "Would you mind hanging out for a few minutes so we can take your vital signs?" Since she hasn't unhooked me from all of the infusion pumps and removed the long, sharp needle, the question is moot; it amounts to, "Sit, Fido, sit!"

When my vitals were taken, I was found to have a fever of 99.5 or so. She said that we'd wait a few minutes and see if it's coming down. After five minutes or so, it was higher, eventually reaching, after several tests, 100.3. While this was quite concerning to the nurses, I actually felt just fine. After several nurse huddles and telephone consultations, after the temperature got to 99.1, I was sent home to test myself and instructed that if the temperature got to 100.4, to report to the Emergency Room!

We got on the road just in time to confront Big City's worst rush hour traffic in the rain! We blazed home at an average speed of 11 mph!

I tested my temperature immediately upon finally reaching home; it was 99.5. Two hours later, it was 97.9.

Today, the next day, I feel fine! I am looking forward to Infusion 3 of Round 1 later this afternoon. Round 2 will start January 6. I suspect that it will go more smoothly since I know what to expect and now have that great nausea prescription!

All in all, despite this speedbump, These treatments are going well, much better than my chemo in 2009.

Infusion Day 1...

...of a trillion. Like our federal govenment, I only think in trillions.

We arrived at the location nearest Big City that does infusions that is nearest our retirement cabin out here in the woods. We were asked to select a suitable infusion alcove. Each alcove contains the usual recliner, a guest chair, infusion pumps, counters and a sink! This is a big change from my last experience with infusion. The last time, there was one big room with 15-18 recliners, each with a guest chair adjacent. Today we got an alcove.

Nurse R met with us and carefully explained everything and proceeded with the infusions. I was given various preparatory medications mostly intravenously, but a few were administered orally.

Finally, after about noon, we got to the good stuff! As I have previously mentioned, the infusion is started at a very slow rate of flow and increased until side effects appear. In my case, side effects amounting to a red face and a slight fever, appeared at about 87% of the hoped for maximum flow. I had tolerated the infusion well at 75% and so, after consultations with the doctors and a nurse huddle, infusion was stopped until the redness subsided and the fever dropped. That took 15 minutes or so, during which I was up walking around, glad to be untethered and checking out the available free snacks!

Infusion was restarted and then finished at 75%. Aside from being tired after a long day, I feel very fine. If this is the extent of side effects, this process will be a relative breeze. However, just one swallow does not a summer make (thanks, Aristotle!), one infusion may not set a trend or set a precedent. Perhaps more side effects are coming. I hope not.

So far, so good!

I appreciate the calls and emails and FaceTimes from all of you. You words of encouragement lift my spirits greatly. I appreciate them!

Patients, start your infusions!

Arrangements are in place to start infusion in early December. The sessions are on two successive days. The length of time it takes for each depends entirely on how well I tolerate it. In essence, if there are few side effects, they will increase the flow rate until the side effects are moderate. If the side effects are severe, they will slow the flow rate.

Having done this previously, I expect the process to take most of the day, that is, 5-6 hours. I plan to take a laptop and entertain myself as well as I can when I’m feverish, nauseous, et al.

I opted to get started before Christmas as the sooner I start, the sooner I finish! I’d love to have this process done and full recovery made before vacation season.

A decision is made.

My adorable wife and I have been discussing my treatment options. She is included in the decision because she has been by my side supporting me throughout this ordeal; not just the recent onset of symptoms, but right from the beginning, some ten years ago. Whatever is decided, therefor, involves her as well.

I was given two practical options by the doctor. First, an oral medication taken once per day for life. The medication is very expensive and my cost, even after insurance, would be quite high.

The second is an infusion done on two successive days once every four weeks for six cycles totaling 24 weeks. Once the treatment is done, I will be finished, done, released, free at last, until and unless my M-spike, IgM, anemia, weight loss, et al return. When I had the same drugs previously, I was symptom-free for about ten years.

The infusion therapy is covered by Medicare as treatment rather than a drug. The ultimate cost to me would be relatively low and, of course, paid for in 24 weeks.

The infusion therapy uses the same drugs that I had previously. I suffered very uncomfortable side-effects as you know if you re-read the earliest entries in my blog..

I have decided, all things considered, to undertake infusion. I will communicate my decision with the doctor’s very helpful patient navigator tomorrow.

I accept that I am trading off possibly worse side-effects for one and done.

I don’t yet know of course, if I will start treatments immediately or after the holidays. I will post when I know.

New challenges and a new doctor

I have not been posting as frequently as usual because I have been faced with very difficult challenges. As I have previously reported, the numbers shown in blood tests that indicate the presence and vigor of my lymphoma have been increasing steadily. My IgM number is now 2093; the normal range is 45-281. Of greater significance is that the number just keeps climbing; one year ago, it was 1359 and two years ago, it was 700.

I have also suffered rather alarming symptoms related to the anemia that accompanies lymphoma. At the start of this year, I weighed 178; on October 15, I weighed 163. I have been tired and feeling weak.

At my regular three-month visit with the doctor, he shrugged off the symptoms and said that he didn’t recommend treatment at this time. I had, for some time been losing confidence in this doctor. When he announced that his practice had recently hired a specialist in lymphoplasmacytic lymphoma, I jumped at the opportunity to switch my care to a new doctor.

I visited the new doctor a few days ago. He recommends treatment and offered three possible therapies; each with its own set of side effects and costs. The treatment he recommends the highest is an oral medication that has a retail cost of...fasten your seatbelts, gentle readers...$14,000 per month.

Of course, the subject of insurance, in my case, Medicare Part D, comes into question here. As luck would have it, we have just completed a study of our Part D insurance and decided to change to a different carrier. You can imagine my anxiety when I telephoned the new carrier, as of January 1, to ask what my out-of-pocket would be for said prescription. It is not a happy number.

I am still evaluating my options. I promise to post more as I know more.