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.

CANCER!? Always HOPE!

Dee was 28 years old when we found out it was cancer. It didn't even matter what type of cancer, the fact that it was cancer stunned us. Following the news of cancer was the news that Dee only had 30 days to live so they would just keep her comfortable until then. Talk about shock after shock.
Luckily for us the doctors changed rotations on the cancer floor right about that time. As the next doctor and his team visited us, they had some hopefully news. This great doctor, Dr Holen, (who actually speciliazes in colon cancer) said that he had seen to many different things happen with cancer to give up hope. He let us know about an aggressive treatment that they had never tried on on an adult before but it was used to treat children with rhabdomyosarcoma. He said that he believed she was young enough to try this. His team cautioned that no adult was even expected to survive the treatment but that the treatment should give her 6 months to 2 years.
This is where Dee and I had a heart to heart, or at least as much of one that we could with Dee sleeping so much. I told her that if she wanted to fight and try, I would stand by her side and do everything I could to help. She decided to try, Dr Holen gave us the message that we needed to hear - there is always HOPE.

Finding Out it was Cancer

Once Dee was in the ER, they quickly admitted her into the hospital. The first team (her hospital is an university one so everything is accomplished by a group of people) that met with her was the blood doctor's. Due to her counts, they believed that she had leukemia. They did a bone marrow biopsy which was extremely hard for Dee to endure. They tried the procedure in her hospital room, stating that it was easy, and they couldn't get through her hip bone. She was in excruciating pain and they still had to complete the biopsy. They took her to radiology and tried again, this time getting through. The bruises from this lasted her a year. They agreed that she had leukemia and moved her to the cancer floor.
When she got to the cancer floor, the team of doctor's running the floor at the time told her that they didn't agree with the leukemia diagnosis. They scheduled her for a surgery to removed the two biggest lymph nodes that were protruding out from under her chin. Before they could go through with the surgery they had to boost her platelets and red blood cells. They gave her multiple transfusions over the next two days and then they were able to preform the surgery. Once they had the lymph nodes they were able to declare that it was actually alveolar rhabdomyosarcoma.

Before We Knew It Was Cancer

It is easy to see patterns and things when I look back on the year before we realized that Dee had cancer. She ended up going to Urgent Care more that year than past years. She had problems in the past with allergies every spring that sometimes caused a bit of swelling in the lymph nodes but it was like nothing like she had that year.
The first time that she got unusually sick was on our trip back from California. We had ran out of money and ended up spending time sleeping in our truck. This should've been fine but she got very sick to her stomach and started having anxiety problems after we got through Texas that lasted the whole way home. Once we were home and she got a full night's sleep everything seemed to be fine. We ended up thinking that it was possibly a minor care of food poisoning and maybe that is all it was. The odd thing is that she has had anxiety traveling even 2 hours away since then. That trip took place in May of 2005.
Over the next year she ended up at the Urgent Care a few times with swollen nodes and everytime they told her it was a minor viral infection. We weren't living in a new home and she hadn't changed jobs so we were trying to figure out where she was getting the infections. She became even more paranoid about cleaning her computer and phone every morning and after lunches thinking that the virus had to be coming from work.
By the beginning of May 2006 her lymph nodes were so swollen that they were protruding out from under her chin and they were getting harder. She was also experiencing more fatigue and some nausea when she was eating. The Urgent Care once again told her it was a viral infection and gave her medicine accordingly. This time they advised her to set up an appointment with her regular doctor. She hadn't went to the doctor earlier because her boss at the time had a policy that no one could have a doctor appointment during work hours (which is why she kept going to Urgent Care after work) and her boss had written up people for doing it. This time it was doctor ordered so she set up an appointment but she couldn't get in to see the nurse practitioner until the end of May.
By the time the NP's appointment came around, Dee had to call in sick to work because she was so weak and throwing up all the time. She had went downhill a lot over Memorial weekend but we already knew what Urgent Care was going to say. I researched her symptoms online and found that they were the symptons for many viral infections, mono, and cancer. In fact the first test the did was for mono and then they tested her basic labs. It was at that time the NP realized something was very wrong because her plattlets were extremely low (The count was 11 or 7) and she sent us to the emergency room.

Current Situation on 4/7/09

Dee has just finished her third battle with rhabdomyosarcoma (her last chemotherapy treatment was on March 5th) and this third battle has really left her wiped out. Some days she seems to be getting better and we continue to have hope that she will make it.
We are starting this blog to share the whole experience to date for other adults that are dealing with adult rhabdomyosarcoma.
We will also be posting a donation button on this site for anyone that can and would like to donate to help us cover our financial difficulties. This third battle has left us in financial ruin along with the fact her cancer had taken her job from her and the economy took mine from me. After this post I will try not mention financial difficulties (some days it is harder) but I wanted to at least make one mention to why it is there. Please enjoy the blog and learn from it even if you are unable to donate, this is only a choice we are offering because of our great need at this time.
Thank you, we hope that this blog provides information as well hope.
Jen and Dee