Scott Spiegel's Fight with Cancer

Scott Spiegel's Fight with Cancer

Scott Sherman Spiegel is the 52-year-old husband of Diana Spiegel and father to Benjamin Spiegel and Beverly Johnston (Spiegel).

In 2002, Scott was diagnosed with Hairy-cell Leukemia and underwent chemotherapy for 7 days (24 hours a day). He has been living a normal life with his family since then, with most of that time exhibiting no signs that he was ever even sick. Then in December of 2004, a routine checkup showed signs that the cancer had "returned" so he was advised to undergo a 2nd round of chemotherapy.

Scott is currently in the ICU at Indiana University Hospital on the IUPUI campus in Indianapolis (corner of University St. & Michigan St.). He went in to start chemotherapy (his second time; the first one was 2 years ago) on Tuesday, January 4th, 2005. Everything was going as planned - he was on the 5th floor in room 5832 and had a mainline providing the drugs 24/7. One bag would take 24 hours to complete and then they would immediately load another bag. Along with the chemo, he was also receiving some antibiotics and other drugs to prevent infection and assist in other ways.

The "plan" was that he would be in for 7 days, to go through 7 bags. Up until Thursday afternoon, everything had been going according to plan. Around Thursday night to Friday morning (1/6 - 1/7) he started getting a rash over his entire body and started feeling "like crap".

On Monday after 6 of the 7 days of chemo, they stopped the chemotherapy because there was fear of kidney failure. It was believed that either one of the antibiotics he was on, or the chemo itself, had actually caused his kidneys to fail. The hope was that they could give him some drugs and fluids and "jump start" the kidneys and then get back on the chemo, once everything was stabilized.

As we have become used to, this didn't pan out either.

He was placed into the ICU on the 6th floor on Sunday. He was placed on dialysis (along with several other bags of stuff) and has been there since. Once again, it's worth noting that all of this has been the result or effect of a severe allergic reaction to Allopurinol.

Scott has been coherent most of the time, although he has some confusion due to his isolation and the drugs. He knows what is happening and who everyone is. Conversations seems to be mostly normal with only occasional stray comments about firemen in the garage or wanting to pet me (don't ask).

Beginning this morning (Thursday), he has started to get a little more "looney" but the doctors and nurses expect it to pass and there is no concern. He has had a cardiologist check out his heart because on Wednesday (1/12/05) he went into Atrial Fibrillation and has remained in "atrial fib". The final word, however, has been optimistic, as they feel that there is nothing to be concerned about with this.

[Inserted Update] They did a cardio conversion to normal rhythm today; in other words, they shocked him back to normal (Friday, 1/14).

Scott also had a visit from a speech therapist to determine if there were any concerns with his speech and swallowing. As of Wednesday (1/13/05), he was not allowed any food or drink. This will continue to be evaluated as he obviously needs nourishment and fluids, aside from the IV.

He continues to have difficulty swallowing, so no water (or Diet Coke as he keeps requesting) for now.

Late Wednesday night/early Thursday morning Scott attempted to get up from his bed and in the process toppled a couple instruments, breaking a few of them. Only a short time passed before the situation was found and the instruments replaced. Scott did not injure himself although it is becoming apparent he is needing constant supervision. An attempt was made to sedate him in order to prevent him from attempting anything that may injure him. The sedation had no effect. Therefore, family and friends have devised a "shift schedule" to be in the room with Scott when at all possible (working around his medical team and their duties). Each one will be taking 1 hour during the night to sit with him.

On Thursday it was found that his hemoglobin had dropped significantly, no one yet has an explanation.

Friday, January 14 2005

Scott made it through the night incident free. There were at least two people in the room with him at all times. They even managed to get him to sleep for about 5 hours; this was done with the assistance of Ativan.

I should have mentioned earlier that he has a tube that is feeding him and it hasn't caused any problems yet. This has been in since Wednesday, I believe.

The great news: His hemoglobin and white blood cell count have gone up! Also they have been able to take him off of the blood pressure medicine that was stabilizing his blood pressure. They have discontinued dialysis indefinitely, but they will reassess if necessary.

9:44 pm, Friday (1/14/05):

I just saw him. He looks much better than even the last time I saw him. I am so taken aback by how much his condition has improved since I saw him on Wednesday. He recognized me as "One of my favorite friends, Wayne".... well, he is under the influence of some powerful drugs. :)

Scott doesn't have as many tubes and wires going into him anymore. It's so reassuring to see fewer and fewer machines needing to keep up his normal functions. Psychologically speaking, he seems fairly coherent and knows everything that you'd expect him to know about why he's here and what is happening to him.

I'd say that he is only getting better and he is obviously getting the best care he can get. The care he's getting from the hospital is second only to the love and caring emanating from the dozen people staked outside in the waiting room... waiting for him to leave the 6th floor ICU and come home.

** Some Needed Recognition: His family has been and is currently being supported by the Lilly Clinic staff; providing lunches and a family room where they can seek rest, get a shower and find some quiet down time. Many thanks for this awesome consideration!

Saturday (1/15/05):

We continue to see improvements in all aspects of Scott's recovery. Psychologically speaking, he improves with leaps and bounds everyday. Conversation with him in the evening shows marked improvement even from that very morning. This progress gives everyone great hope that a full recovery is nearly certain. However, the road to recovery is sure to be long and winding... maybe even a few bumps along the way.

Most exciting for Scott, he has been allowed ice chips and he continues to "study" for his swallowing test that will be administered on Monday. If he passes the swallowing test, he will have the feeding tube removed and will start to receive food and drink normally. During his last attempt at the swallowing test, he made it through all of the requirements, but asked for one last sip at the very end and unfortunately choked on it slightly. The fear with the swallowing is that fluids could "go down the wrong pipe" and could contribute to aspiration pneumonia - we must remember that the chemo treatments have left his body weakened, so this would be very taxing for him at this point.

[This is the ironic part, in my opinion: we are trying to get him back to health, but only after having pumped in poison for 6 days. Therefore, recovery attempts are shaded by the effects of the chemo still acting on his body.]

His blood counts show overall improvement, with some days showing positive gains and others showing small set backs. His white blood cell count and hemoglobin were down slightly this morning, but this is after an increase yesterday. From what we understand from the doctors, these readings cannot be taken as scripture as other aspects of Scott's condition may be tainting the results.

Today was Diana Spiegel's birthday and we managed a party in the hospital - even Scott participated (from his bed) by signing his card to her and presenting it with her gift personally. The immediate family was in the room with him and the rest watched from just outside.

Diana said today that Scott's being here and the progress he's made is the best birthday gift she could have received.

Happy Birthday, Diana!

Sunday Update (1/16/05): Scott has been moved off of the 6th floor, out of ICU. He is back on the 5th floor in room 5248. They will be monitoring his heart rate remotely at Methodist and the nurses can be called if necessary.

Any visitors must still wear a mask and gloves and since the room is smaller, only 2 visitors at a time are allowed in the room.

Monday (1/17/05): Scott has had all but two of the tubes removed from his body, the only ones remaining are the IV tube (which will be removed as soon as he’s eating and drinking regularly) and the dialysis tubes that will be removed today as soon as the renal team gets to it.

Currently, the doctors are saying that Scott will be going home tomorrow or Wednesday at the latest. His prescription for fast recovery is lots of rest. They will not know whether the chemo did its job for another 7-8 weeks.

Scott is 100% with us psychologically with all side effects of the drugs worn off. He has seen the web page and is reading all of the comments. He continues to read them, so feel free to leave him plenty of get well messages at the bottom of this blog.

Tuesday Update:

He's leaving the hospital!

Scott will be leaving the hospital at 4:00pm today and going home to recover. As soon as I get more information on the recovery plan, I will update ya'll.

WELCOME HOME, SCOTT!!!