New Caregiver

Dear Gretchens mom,

I'm sorry to hear that your daughter is going through this tough time.

I'm a 36yr old male, in Queens/NYC, who knows, from personal experience, that this type of cancer is extremely difficult to talk about (with either friends, family or medical personnel), or to deal with.

But before I go on, I must insist that you find a doctor, nurse or other medical provider to talk to. This will help you alleviate the feelings of "I'm all alone" & "no one knows what I'm going through".

You also must have:
1- Pain Management Doctor and nurse
2-Oncologist and nurse
3-Radiation Oncologist and nurse
4-General Dr and nurse
5-Social Worker
6-Patient Representative

During the year 2000, while I was working on getting my 2nd college degree, I started living the same situation as your daughter, so I really understand the "twilight zone" feeling that she might be going through..

With me, it started in 2000. I went to Beth Israel Medical Center in NYC for treatment. The Doctors and especially the nurses are caring and will bend over backwards to help you out.

I had several small tumors containing small amount of Squamous Cells removed, went through two weeks of Chemotherapy (each treatment was 4 weeks apart) where I had to stay in the hospital for a week. I also had two rounds of Radiation Therapy before, during and after my hospital stay.

The Chemotherapy wasn't that bad. The only bad part is that the treatment was a 24 hour deal, so I had to stay in the hospital for a week. While I was in the hospital I was anxious, don't be afraid to let the medical staff know that you're anxious, stressed and/or have difficulty sleeping. They will do everything to help you feel comfortable. The Chemotherapy that they gave me usually doesn't affect the hair, so I didn't have to deal with questions or disclosure until I was ready

Once I come out of my hospital stay, I had a round of Radiation Therapy. This is where contacting a doctor who specializes in Pain Management comes into play. This doctor specializes in dealing with pain and will help you manage it. If your doctor doesn't recommend one, ask for one. Your doctors and the Pain Management Doctor work hand in hand to make sure you can continue with your treatments and that you are comfortable.

At first, Radiation Therapy doesn't bother but after wards you will feel sore, as if you had a sunburn. Depending on the sensitivity of a persons skin, the intensity of the pain may be stronger and they may have difficulty walking and sitting. The Radiation Oncologist may give her a cream, some pads or other stronger medicine to combat the discomfort. Don't put any other lotions or ointments on without talking to your doctors first.

Get close to the Radiation Oncology Nurse because you will see the nurse more than the doctor during the treatments. Don't be afraid or embarrassed to talk to the nurse about how you are feeling, about any pain or changes you may notice in the area being treated.

You may find it difficult to go to the bathroom at some point. Do not take laxatives on your own because a laxative will just make you go to the bathroom and make matters worse. To help you along the doctor will suggest that you take a stool softeners, such as Colace (Docusate Sodium) and Senokot (Sennosides). Word of advice, the store/generic brands work just as well as the brand names, plus you'll get a larger quantity at a lower price.

After completing my round of Radiation Oncology, I had a biopsy and found that some cells looked Pre-cancerous and Squamous but the doctors all agreed that this could be caused by the Radiation Therapy but to be sure they decided to do another round of chemotherapy and radiation therapy.

This time my skin didn't react as well as the first time. It started to split and became extremely sore. My Radiation Oncology Nurse and pain medicine doctor really helped me out at this point. The Pain Management Doctor tried a combination of different medications until she hit ones that helped. I had the discomfort like before but I was also hit with strong pains that quickly jabbed through my body. The doctor gave me some medication (Actiq and MSIR) that a person takes for the sharp pain and it does help.

Unfortunately, when I did my 3rd biopsy it came out Pre-cancerous again. They don't know if it is because of the Radiation Therapy or because they are Cancerous, because cells get destroyed and deformed after your 1st round of Radiation Therapy. Luckily, my doctor didn't want to give up, (at this point most doctor's would recommend a colonoscopy) but my doctor recommended that I see the Oncologist to see what could be done.

My Oncologist put me on Interferon, which is usually used for treating hepatitis. After this, my biopsy's have shown no change. So the doctors say that its under control. But when I started the Interferon, I was wiped out and tired, more than I was with the Chemotherapy and Radiation Therapy. One added effect of the Interferon is that it will give you flu like symptoms when you start. With time your body does adjust.

During the Radiation Therapy the doctor and nurse will recommend that you do Sitz Baths, which do help. If you have a shower head that can be hand held, you can use that also when you shower.

If you can believe it, I did this while taking college courses. I took a small break because I was running myself ragged and to get use to the Interferon.

If your daughter has sensitive skin and the Radiation Oncology causes bleeding you can use Depends Undergarments. They have ones that pull up just like standard underwear. That way your daughter won't soil your clothes and she can try to lead a normal life.

One final thing. Keep a journal and include the dates of when you started your treatments and when you finished, your appointments, conversations with the medical staff, suggestions that the doctors and nurses may provide, and of all your medications (dates when you started and finished). This will come in extremely handy in the future.

The one good thing that happened is that the Chemotherapy didn't affect my hair. This isn't uncommon because the type of chemotherapy usually used in this case doesn't affect your hair cells. You will be surprised at how such small things will become a aid and give your daughter assistance.

I know that eventually you may want to tell people what you are going through. People may ask what type of cancer you have and where it is . If you don't want to tell them just say that you have it on your back. People will leave it at that.

I wish you and your daughter the best and I know that with your assistance your daughter will pull through this.