3/28 - Day 10, Cycle 1: Nadir Point

Today was Kristine's nadir appointment with our oncology team. The nadir point is the point in her chemo cycle where her white and red blood cell counts are at their lowest. Her white blood cells (those that help fight infection) are only at about 10% that of the normal level (400 vs. the normal 4000 to 5000).

It was for this reason that Kristine's mom and sister would not let her set foot in the Rite Aid without wearing the surgical mask she carries with her in her purse. Of course, Kristine being as stubborn as she is, pulled the mask down around her neck the second she was out of sight.

The appointment went as expected and Dr. Staddon was very encouraged by Kristine's physical and mental state. She has lost much of the retained fluid that was causing her discomfort over the last week. Her energy level is very good, although she loses steam pretty quickly. She's eating well and catching up on some much needed sleep. Overall she is doing exceptionally well for just having finished a week of chemo. Next week she will be even better and preparing for her next cycle.

Kristine hasn't started losing any of her hair yet. However, she did say that she might consider posting photos of head covering options (including bald) for you all to vote on (there is a big "might" there). Also, depending on how she's feeling, Kristine may soon be writing a post of her own. So look for these special addition posts in the next few weeks.

3/26: Day 8, Cycle 1: ICU Discharge

I have just a quick update for today. Kristine was discharged from the hospital. Although we were all hoping to have her home early, no one was more anxious to get home than Kristine. Early discharge was nearly in the bag until one of the head nurses brought up concerns with Kristine's port (the small IV port implemented under her skin). The inspection led to a several hour delay. Only after a visit to radiology to inspect the port under x-ray were we able to leave the hospital -- around 3pm. Getting out of the hospital did a lot for Kristine's spirit. She was really ready to get out of bed and move her legs. Even this short walk made her very tired.

This week is Kristine's second since treatment began and the one following chemotherapy. It will be a difficult week as she will feel very tired and weak. The next milestone is meeting with our oncology team on Wed. This is what is called the nadir point. It is around this time when Kristine's white and red blood cells will be at their lowest, which leaves her susceptible to infection and anemia, respectively. For this reason it is imperative that Kristine avoid visitors that show any signs of cold or infection.

To explain why her blood cell counts will be low, chemotherapy drugs work by attacking or mimicking rapidly dividing cells at various stages of the cell life cycle (i.e., resting, growing, or dividing (mitosis)). The key term here is "rapidly" dividing. Cancer cell division is different than most normal cell division in that cancer cells do not retain the "recognition" function to stop dividing when old cells are replaced like normal cells do. Cancer cells continue to divide out of control to form a mass of cells -- a tumor. The trouble is that while chemotherapy drugs can find cancer cells and stop their growth, there are other cells in the body that also divide rapidly. These normal, rapidly dividing cells include blood cells, cells in the mouth, stomach and bowel, and hair follicles.

3/22-3/24: Day 4, 5 & 6, Cycle 1: Chemo, ER and ICU

We’ve had a busy couple of days pass. I myself was able to catch up on some sleep Thursday night only to deplete my reserved shut eye the following day with an all-nighter in the ER... I’ll get to that in a minute.

I recently received some advice from someone about living with cancer and treatment. It was never so real and true as it became these past few days. I was attempting to plan a time we could meet and catch up. He stopped me from thinking of a good time to meet. A man who lost his first wife to cancer and whose second wife is in recent remission from a brain tumor, he said, “Ryan, don’t worry about this. You’re going to be living day to day. There will always be some new surprise popping up that you didn't anticipate.”

Well surprises have certainly popped up lately.

On Thursday (Kristine’s final day of chemotherapy) we had just about finished in the cancer center. Kristine had dropped about 4lbs of the fluid she was retaining, which made the center's staff more comfortable with her condition. She started to feel a sudden shortness of breath and increasing pressure on her chest. We notified our oncology nurse and a wave of 5 other nurses rushed into check Kristine’s vital signs. Her “pulse-ox” reading (the percentage calculation of oxygen levels in the blood) had fallen into the 80s when it should be greater than 90%. The nurses administered oxygen and monitored her for a little while.

Dr. Staddon discussed the situation with us after Kristine’s oxygen levels had stabilized. There was discussion among the nursing staff of taking precaution and admitting her to the hospital. However, Dr. Staddon felt that Kristine quick recovery was a good sign and that she would be better off in a familiar comfortable surrounding at home. He felt that the risk of increased exposure to hospital grade infections outweighed the benefits of close observation. (Remember that chemotherapy lowers the white blood cell count – the basic structure of the immune system that helps fight infection and disease – thus increasing the chance of potentially dangerous infection).

The remainder of Thursday was fine. Kristine, her mom, her dad and I all got a decent night’s sleep. On Friday, Kristine’s good friend J.J. arrived from Chicago for a weekend visit. Kristine was feeling restless and anxious that morning. She was more lucid and aware without the stream of new medication she had been receiving the previous few days. But her awareness left her feeling more discomfort. She had trouble catching her breath and maintaining an adequate resting position. The shortness of breath seemed to worsen as the day continued. She complained of increasing pressure in her chest despite having lost a few more pounds of fluid. Around 9:00pm the chest pressure had become more uncomfortable and her temperature had increased to around 99.7 (we were warned that 100.5 was the tipping point where we needed to seek medical attention). The on call oncology physician wanted to be conservative and recommended that we bring her into the ER for a careful inspection. She underwent a new CT scan and EKG. After several hours the attending physician spoke to us about the medical team’s concerns. When compared to the CT scan from 7 days prior, the new scan revealed 2 additional clots in the vein where the original clot developed.

It's not yet clear whether these are newly formed clots resulting from tumor compression of the vein or embolus—fragments of clot that have broken off and traveled through the blood. The primary concern at this point is pulmonary embolism. This is where a fragment of the clot, or embolus, travels to the lung and blocks oxygenation of the blood. The doctors addressed this concern by adjusting the blood thinning medication that Kristine had been taking. At around 4:00am on Saturday morning Kristine was admited to the intensive care unit (ICU) for close observation until at least Monday. At which time we will review recommendations and next steps with our oncology team. Oh, and by the way, in case you thought that you read the above times incorrectly you didn't. Thanks to hospital and insurance beuracracy we were in the ER from 10pm-4am or 6hrs.

As for today (Saturday), Kristine is in excellent spirits. She’s the most alert she has been all week. She is very weak from the chemo, but hopefully that means it’s doing its job. So until Monday, it’s rest for Kristine’s weary support team and milkshakes and smoothies on demand for our brave fighter.

Ryan

3/21 - Day 3, Cycle 1: Chemo

Kristine finished the third day of her treatment without issue today. These days feel so long as we hope for signs of even the smallest bit of relief. The fluid retention in her upper body is still causing Kristine a lot of discomfort -- breathing, eating and moving herself around are difficult tasks. By the end of the day she had lost some of the fluid weight.

We got some bittersweet news from the doctor today. In reviewing the new CT scans more closely it seems that the main tumor in the vein of Kristine's chest is not only accompanied by metastatic tumors in the blood vessels of the lung but also a series of masses along the same vein leading into the atrium (the chamber of the heart where blood is returned from the body). This could be a very serious complication and disqualify Kristine for surgery if the tumors are all independent, free standing cells. However, Dr. Staddon's team reviewed Kristine's case with colleagues and there was agreement that all the masses appear to be and are likely to be part of the same mass structure. This diagnoses means that the disease is operable. The series of masses could be surgically removed as an entire structure. Of course, surgery is contingent on the success of the chemotherapy, but this news is nonetheless encouraging.

Thanks again to all of you who have responded to the blog or emailed. I am saving all of your communication for Kristine for when she feels up to reading all your kind words. (Right now she falls asleep before I can get the computer in her hands).

3/20 - Day 2, Cycle 1: Chemo

I will start labeling the posts for Kristine's treatment by the day and cycle. As I mentioned in my day 1 posting (3/19) Kristine will receive 3 cycles of treatment with each cycle lasting 3 weeks.

Day 2 of Kristine's chemotherapy was relatively uneventful. Kristine was very groggy and tired the whole day. She awoke feeling more swollen that ever. Since the oncology nurses have been weighing her every day we can keep track of her weigh changes. Since Friday of last week (only 4 days) Kristine had gained nearly 20 lbs just from fluid retention. 9 of the lbs were gained in just 24 hours. This is a factor of both the blood clot and the extra hydration fluids that she is receiving during treatment.

We ended up staying in the cancer center from 9-5. The doctor wanted to reduce some of the extra fluid that Kristine was retaining before she left for home. She received Lasix (a loop diuretic (or water pill) that prevents your body from absorbing too much salt, allowing the salt to instead be passed in your urine. Lasix treats fluid retention (edema)).

She is not eating too much. However, we have discovered the power of the milkshake. No matter how much she refuses to eat, she never refuses a milkshake.

Until tomorrow.

3/19 - Day 1 of Chemotherapy

Today was the first day of Kristine's chemotherapy. The day began at 9 and we left the cancer center at around 4. Kristine did really well and was feeling no pain by the end of the day. She received two drugs during her treatment, Adriamycin and Ifex, along with lots of hydration fluids and anti-nausea medication.

Returning home we met with our home care nurse. She walked Kristine’s mom and I through the steps needed to administer the post-chemo drug (Mesna) and hydration fluids. The whole kit was comprised of 3 large boxes of equipment and an IV pole and monitor. The whole experience was a bit overwhelming. The drugs and fluids are delivered intravenously through a “port” on Kristine’s hip and everything needs to be sterilized and carefully handled. Just call me “Nurse Ryan.”

She’ll receive similar drugs and treatment for the first cycle of her chemo which will last for a total of 4 days. She’ll then have 2 weeks “off” before her second cycle begins – repeating the whole process over again.

The first week of the cycle consists of daily chemotherapy. She’ll be relatively weak but still functioning. The second week she will find herself in her weakest state. Her blood cell count, and in turn her immune system, will be at its lowest point putting her at a higher risk of infection. The third week will be her best. There are no treatments during this period just time to reenergize for the next cycle of chemo.

Kristine is scheduled for three cycles of treatment lasting a total of 9 weeks. She'll then be evaluated to see how well the chemo worked. Either surgery or more chemo could follow.

We got some good news. The new CT scan taken on Thursday of last week showed that the tumors had not progressed much from the previous scan over a month ago. This was an encouraging sign that the cancer is not as aggressive as we feared.

Thanks for all the feedback on the site. I will incorporate some of your suggestions.

3/18 - Leiomyosarcoma

Well here we go the first of many posts to update friends and family on Kristine’s progress. Kristine will begin her first cycle of chemotherapy on Monday to treat a rare type of cancer known as sarcoma, specifically leiomyosarcoma (lI-O-"mI-O-sär-'kO-m ). Leiomyosarcoma is a malignant tumor formed in smooth muscle tissue. Smooth muscle is the major structural component of most hollow internal organs and the walls of blood vessels. It can occur almost anywhere in the body but is most frequent in the uterus and gastrointestinal tract.

The original mass that formed in Kristine is especially rare as it originated in a blood vessel behind the clavicle (i.e., collarbone). The cancer has metastasized (i.e., spread) forming two smaller tumors in Kristine’s lung. Cancers that have spread to other organs are classified as stage IV – a classification meaning that the disease is advanced.

An additional complication, one that lead to our initial visit to the emergency room, is that the mass is compressing a major vein that transports blood from the head, neck and shoulders to the heart. The compression of the vein has caused a clot which in turn has caused substantial swelling in Kristine’s head, neck and upper body. She is taking blood thinners to reduce any further clotting.

So how did we uncover this in the first place?
Kristine and I (Ryan) had taken a week long ski vacation to Aspen, Colorado in February. We met up with Kristine’s cousin Cris and her husband Biff. On the second day of our visit, we found ourselves at Aspen Valley Hospital after Kristine woke up with substantial swelling in her face and upper body. Several CT scans and blood tests later, the attending Physicians discussed their findings. The CT scans showed lymph nodes that were 5-10 times the normal size. They had also uncovered a clot in one of Kristine’s veins. The doctors thought the symptoms were a primary concern for Lymphoma (cancer of the lymph nodes) but needed a biopsy to tell for certain.

We thought it best to wait until we got back to Philadelphia to get the biopsy and seek counsel from our primary physician. Kristine was admitted to the Aspen Hospital and I bunked up in the bed next to her. We broke the visitor rules a bit by bringing in a couple of beers and playing cards with Cris and Biff in the hospital room.

Returning to Philadelphia, the appointments had already been set up. But Kristine’s biopsy uncovered a surprise. When the surgeon attempted to extract the large lymph node that appeared in the CT scan there was nothing to take. The lymph node was not large enough to get a biopsy. It seems the blood vessels around the lymph node were so enlarged from the clot that the upper lymph nodes just appeared larger in the scan. This little set back cost us about a week.

The next day after Kristine’s surgery, her right arm became very swollen. Fortunately, Kristine’s sister Colette was in town and took her into the emergency room. I rushed home from work. The physicians in the ER were updated on Kristine’s condition but had little to offer. They suggested that she be admitted to the hospital in order to expedite her diagnoses (after all it had been almost 3 weeks since the original symptoms appeared). An MRI was a needed next step to identify if a tumor in fact existed. It was the weekend, however, and the MRI was booked solid. The hospital stay was looking fruitless until the attending oncologist came to Kristine’s room to discuss her case. Dr. Staddon (there is a link to his profile in the right margin) really got things moving and became an important champion. Within a week Kristine was scheduled for an MRI, MRA and biopsy, which leads us to the present and Kristine’s impending chemotherapy.

We are all hoping for the best and will keep you updated.
Ryan