After Chemotherapy

Life doesn't just go back to normal after chemotherapy is over. In Dee's case she still had weekly labs for the first month and she had monthly CT Scans for the first couple of months. The doctors were just waiting for the rhabdomyosarcoma to come back and since they couldn't find where it started, they were at least hoping to catch it when it first spread to the lymph nodes. Then there was the chance that it wouldn't spread the same way that it had the first time so they were just trying to keep an eye on everything. Dee's boss wanted her to start back at work as soon as the chemotherapy was over. She (her boss) kept harrassing her but the doctor's knew she was really weak and that her system was very weak so it would've been devestating if she had gotten a cold or worse. Finally Dee's boss didn't give her choice. Even though she was out because of doctor's orders, her boss said come back now at least part time or you won't have a job. So working with the doctor's they set up a three days a week schedule for four hours a day. Dee was still on morphine for pain and she was still pretty weak so she couldn't drive herself back and forth to work. After a couple of weeks her boss demanded that she move to five days a week at four hours a day or else she would be fired. Then her boss got mad at her for having to go to CT Scans or any other type of doctor's appointment during that four hours. It was because of her boss's refusal to allow her to go to doctor's appointments during work that Dee's cancer went to stage four in the first place and I was having a hard time dealing with her boss holding her job over her head in an attempt to keep her from her appointments again. She liked everyone at work besides her boss and on her good days, she liked being able to work again plus she knew that the insurance was vital so she kept on working.

She did get quite a bit better during her first break. She wasn't able to completly come off the morphine because the chemos had sent her body into menapause and the doctor couldn't give her anything to help. A bit of morphine at night kept the hot flashes down and allowed her to get some sleep. She got to the point where she didn't need any of it during the day. She wanted to do some extra things while she was feeling better, like travel and see her family but her boss refused to give her any time off because she had taken off so much time for chemotherapy. The one thing she was able to do was to get some professional pics done. She loved professional pictures and we hadn't had them done since our wedding. The picture is of Dee and I a few months after she had finished chemo (she is in the front). She was happy and we were trying to live as full of lives as we could during that time.

5 Months of Chemotherapy

After spending most of June in the hospital Dee still had 5 months of chemotheraphy to look forward to. The weeks rotated depending on the cycle so that on some weeks she only had to go in for chemotheraphy on Monday. Then there were the hard weeks that she had to have chemo everyday but they were typically followed by a week where she only had to go in for blood tests. Depending on which of the four chemos she was getting some weeks she felt almost normal.
One of the drugs that made her sicker than any of the chemotheraphies was actually supposed to protect her stomach from one of the chemos. The first time she had to take it at home in pill form, she was sick within the hour. She spiked a fever and she couldn't keep anything down so she couldn't even take the next pills that she was suppose to have. Since she had just gotten out of the hospital the fever and throwing up really freaked us out. We went to the ER and they ran all these blood tests and cultures to see what was wrong. She ended up having to spend a few days in the hospital because the chemo had lowered her white cells again. They couldn't find anything so I started researching this new pill she had taken. I found out that it was being tested as a chemo drug in Europe which told me that it was a pretty nasty drug. Also the rare side effects were fevers and vomiting. After the trip to the ER happened the next time, we got the doctors to give her the drug intravenously which helped because she no longer had the vomiting. By then we also knew what over-the-counter meds the ER used to fight the fever so we just kept a log of her temperatures and gave her the meds at home. She hated going to the ER and being stuck in the hospital so this made her feel a lot better.
The chemotheraphy didn't get any easier as time went on, it got worse. Her bone marrow bounced back real good most weeks but every so many weeks her red blood cells would get so low that she had to have a transfusion. She had to have the white blood cell shots every couple of weeks and those always caused her a lot of pain as the bone marrow increased white blood cell production.

Still she was in great spirits when her last day of chemo came along and it was a good day for her. Here is a picture of us on her last day of chemo in 2006. I had broken four bones in my foot the day before which is why I'm in a wheelchair.

Effective Chemotherapy

Dee's chemotherapy worked quickly. If you remember, I mentioned that she was in the hospital for a total of 23 days when she got her diagnoses. The first 7 days were spent figuring out what she had and then coming up with a plan once we got a hold of the great doctor that helped her. After two weeks of chemotherapy, she started losing her hair. She had very long, thick hair thanks to her Native American/Mexican heritage. You couldn't tell that she was losing by looking at her but every time she ran her hands through her hair, she came out with a handful of hair. This added to her depression, especially since she was awake a bit more. So she decided to take control of the one thing that she could, her hair. The NA on the hospital had a razor and was able to cut off all of her hair for her. She felt better about losing her hair when it was just little pieces going away. Plus she was able to get some cute little knitted caps that volunteers made for the patients. They were very colorful and she really liked them.

Besides taking out her hair, the chemotherapies immediately when to work on the cancer. By the time we left the hospital, the cancer was cleared out of her bone marrow and it was reproducing its own cells. It was working pretty good too because the chemo would knock the cells down and they would just come back. She was on shots to force her bone marrow to work on white blood cells first but once the shot wore off, it would work on everything else.

At the end of her 23 day hospital visit she was exhausted and the chemotherapy plan was stretched out ahead of her for months to come. The important thing was that she was alive and things were moving in a positive direction. Here is a pic of us just before Dee got out of the hospital. She was alert, her lymph nodes had gone down, and she was happy to be alive.

Dee Passed Away

June 28th Dee unexpectedly passed away in her sleep. She just stopped breathing. I don't know what happened yet but I want to continue this blog journey on what her three battle with rhabdomyosarcoma was like. I'm having some problems writing right now but I hope to be able to continue this blog journey in hopes that it can help others who are battling rhabdomyosarcoma.

Current Situation as of 5/11/09

First I want to say that I am sorry that I haven't been on lately. I was trying to get the outdoors ready for summer and still take care of everything. When you get so busy, something has to be pushed off to the side.
Second, we were able to cover our judgement. I forgot about this opportunity I had to get a loan but once I remembered, I was able to get the judgement covered. That crisis has been adverted.
Third, Dee's current cancer situation - Dee was doing a bit better. She was up to eating some soup every day and drinking some Boost. Then her doctor took her off of her steroid medicine, dexamethasone, a week and a half ago. This sent her spiraling back to not being able to eat and having a lot of nausea problems. She doesn't like to take pills so as soon has he said that she could stop, she went cold turkey. Her daily dose wasn't that high but she had been on it for 10 months so her body is going through drug withdrawal. She feels that she is almost through the withdrawal so she doesn't want to start back on and then wean off of the drug. As it is there are some drugs that she has never been able to get off like morphine. She just prefers to get off of all the drugs that she can, when she can.

Dealing with the Cancer Diagnosis

When people would ask how do I feel or they would ask Dee how does she feel, we really couldn't answer. We were in shock. Dee was 28, we never thought about cancer. Even when we started researching her symptoms and saw cancer as a possibility, I was in denial. Dee knew something was seriously wrong but cancer wasn't foremost in her mind. The first cancer diagnosis was scary but we still thought that it would be cured and everything would be OK. Then we got all the details of the rhabdomyosarcoma. That information combined with the reality of all the blood and platelet transfusions she was getting seemed unreal, like it was the end of her life. She concentrated on one fact, that she would never be able to have a child after the chemotherapy. Almost every time she woke up, she talked about it. We had already decided to not have children, we had nieces and nephews plus we wanted to be free to travel a lot. Nevertheless she deeply felt the loss of choice and it really upset her.
She did spend a lot of time sleeping during her first days, she was in the hospital for a total of 23 days in the beginning. The doctors were worried about her but her body just needed sleep. When she was awake, she was depressed and crying if I wasn't there. I was trying to work but when her nurse pulled me aside to let me know that Dee was having a hard time during the day, I immediately talked to my boss. I knew that Dee didn't want to be on any more drugs than she had to be and if my sitting by her side was all that it took to keep her off of antidepressants, I was more than happy to do it. Although I had only been at my job a month or two, they had no problems letting me go down to 2 hours a day. Plus they let me start at 6 AM so that I could be at the hospital by breakfast time. When Dee was making the decision to go on the chemotherapy, I told her that I would be by her side no matter what decision that she made and I would help her all that I could. So I spent all day at the hospital, starting about 8:30 in the morning until she went to sleep around 10 or 11 at night. They had an internet hookup in the room so I was able to continue with school and continue researching. I think the fact that I was helping her, helped me deal with everything. In return it helped her because she didn't feel alone and didn't have to always deal with strangers by herself.
She contributes her ability to getting better to my being there for her. I think that it also had a lot to deal with the fact that we didn't dwell on the cancer diagnosis and how close to death she was. She was too close for us to do much about it in terms of death preparation so we concentrated on the chemotheraphy. We learned about blood tests so that we could watch what was going on inside her body. We concentrated on taking one day at a time and we were able to get through those very tough days after the diagnosis.

Chemotherapy

In all of Dee's CT and PET scans, they have never found a tumor so there wasn't anything to surgically remove. The lymph nodes had only been removed to biopsy and it just spreads to the lymph nodes not start there. The only course of action was chemotherapy (not counting the person in Mexico that had some miracle cure that her sister wanted to send her to). They started by cautioning us on the chemo. They only had the chemo regimen that they give children for this cancer to go from and they told us that they had never given it to an adult before. They said that no adult was expected to survive the chemo but it should give her 6 months to 2 years more on her life. Dee was up to trying it so they started the treatment immediately.
Her treatment started on Wednesday June 14th with a dose of Vincristine. Vincristine is considered a plant alkaloid chemotherapy and it is used in adults to fight a number of different cancers and blood disorders. She was on so many different chemos at once we can't say for sure what side effects were from what drugs but her hair started falling out almost immediately so we think the Vincristine helped. Vincristine attacks cancer and good cells alike by stopping cells from dividing and spreading.
Let's take a moment to explain some terms that I will using a lot when I talk about Dee's chemo: Cycle - All of Dee's battles have involved chemotherapy that is given in cycles. Day 1 of Dee's first cycle started with the Vincristine mentioned above. A cycle typically includes certain days of chemos and the certain days off of chemo. Dose - A dose is just a treatment of chemo. Some doses were simply pushed in to the blood stream with a syringe. Other doses were a bag of chemo that ran into the blood stream over a longer period of time. Chemotherapy drug names - Almost all drugs have multiple names, in this blog I will be using the names that we got familiar using.
On day 1 of cycle 1 Dee also got a dose of Cytoxan and a dose of Dactinomycin. Cytoxan is often used in adults to treat breast cancer, leukemia, and ovarian cancer but it is also used with many other cancers. Cytoxan is considered an alkylating agent and it interferes with the resting phase of a cell's cycle to prevent cell division. Dactinomycin is used to treat many different types of sarcoma cancers in adults. It is also considered an alkylating agent and it also works to stop cells (cancer and normal) from dividing.
Day 8 of cycle 1 was for another dose of Vincristine and Day 15 was for yet another dose of Vincristine. Cycle 1 ended with a 5 day break.
Cycle 2 started at the beginning of July with a dose of Vincristine and a smaller dose of Cytoxan. It was also the introduction of a new chemo drug, Topotecan, that was going to rotate cycles with the Dactinomycin used in cycle 1. Topotecan is a bit different because it is classified as a topoisomerase 1 inhibitor. It is typically used in adults for resistant forms of ovarian cancer and some types of lung cancer. Small doses of Cytoxan and Topotecan were also given on days 2, 3, 4 & 5 of cycle 2. Then Vincristine was given again on days 8 & 15. Cycle 2 ended with a 6 day break.
Cycle 3 was a repeat of cycle 1 and cycle 4 was a repeat of cycle 2. These cycles continued to rotate until the end of cycle 7 when the doctor stopped the chemotherapy.
These brutal cycles of 4 different chemotherapy drugs is what almost every child that has rhabdomyosarcoma goes through although the number of cycles varies in every case.