Change is Good!

Hello to all of our amazing family and friends! As you can see, there are some small changes I have made to Rach's Blog. I believe these changes are vital in order to accomplish a few things:
- The need to shift the focus to a more informational and inspirational theme vice a sad and heartbreaking theme.
- The need to make this more about her and how her story can save the lives of others by educating them.
- The ability for those using Google and other search engines to find her blog, enabling us to help others.

I really wanted to take any of the focus off of me, the author and her husband before she lost her battle to melanoma, and place it on where it needs to be - on her. I encourage those of you who have just found this blog to read it from the beginning (Nov/Dec 2009) and read it the entire way through to the end. I promise you, you will get something out of it. For those of you who are familiar with this blog, take the time to revisit some of the entries. I do from time to time; it provides me with inspiration and strength!

This past January, we passed three years since Rachel lost her battle with malignant melanoma. For some of us, it is still fresh in our minds and hearts. In the three years since her death, there have been some extremely important happenings in the areas applicable to malignant melanoma, tanning regulation, and cancer research. I will mention a few of these below.

Melanoma Treatment 2011 - A year of Milestones

Key Melanoma Issues

State & National Melanoma Issues

Some "educational" videos for you and those you love. Please pass it on! Oh, and check out a few of my blogs I follow on the left - these are written by folks who have been in the same fight we have. The videos:





I hope you enjoy the changes and the new attitude "Team Rachel" will be bringing to the fight against melanoma! I will soon start adding information for this year's American Cancer Society's "Relay for Life" - Team Rachel to be held in mid-May! God bless!

~Rich

Why Are There So Many Damn Complications?

The hardest part of her melanoma isn't the cancer itself, it's the complications associated with it. She has been through so much in the last 10 months. Side effect, complication, infection, whatever you could imagine, has affected her.

First it was the vomiting and chills. The pain was next and still prevails even though she is on a fairly high level of constant morphine (She uses a PCA pump to administer her morphine at a level of 6.5 mg per hour with a bolus of 7 mg 4 times and hour). The interferon made her lose some considerable weight, about 50-60 lbs worth. You could see it in her face, in her neck, and especially, in my opinion, in her shoulders. Pictures of her from back in April and now are of a totally different woman. The lymphadema caused by the trauma to her lymphatic system (removal of some nodes and large tumors in others) have caused her to suffer from extreme lymphedema of the trunk and legs, to the tune of a 100 lbs weight gain. She is unrecognizable from the chest up due to loss of weight, and unrecognizable from the chest down due to the accumulation of fluid weight. As if it wasn't enough for her to be in pain from the tumors in her abdomen, the lymphedema has caused an incredible amount of uncomfortableness to her; the tightness of her skin and pressure on her organs is unbearable sometimes. She came down with C-Diff while admitted, which is a bacterial infection caused by too many anti-biotics killing the good bacteria in her GI tract; it results in severe diarrhea and cramping. She had dermititis on her legs from the weeping of the lymph fluid through her overtightened skin; it was itchy and painful. She has had three menstrual periods in the last month, whereas she did not have a period for eight months due to the VEGF-Trap clinical trial. It was spotty at first, took a couple day break, then came back heavy as hell, and then went away for a few days, and came back again, heavy as hell. The period(s) have caused pain in her back and lower abdomen on top of the pain from the tumors and lymphedema. The lymphedema makes the period worse pain-wise for her because of the internal swelling that keeps the discharge built up deep inside until it is released in a bathroom break. Sounds fun, huh?

Speaking of...does any of this sounds fun to you? Could you imagine seeing a loved one go through this, even if it is only one or two of those symptoms? And you still go tanning? God bless you. Please be smart and search the body (naked body) of your partner, kids, and parents if they are under your care. Melanoma doesn't care how young or old you are, what type of skin you have, what background you come from, or what color your hair is. I don't wish this amount of pain and suffering on anyone I may dislike; it is truly a living hell sometimes, seeing someone you love go through what Rach is going through right now.

I ask you all to continue your prayers for her. She needs them now more than ever. Thanks for those of you who read our story and may God bless you.

The Last Month (In Our Hell)

Rachel finished her 4 weeks of high dose interferon treatment on Friday, December 5th. The pain and nausea she had from the treatments seemed to be the only thing we couldn't handle. No matter what prescribed pain meds (Oxycodone, Oxycontin, etc.) and anti-nausea meds (Zofran, Kytril, etc.) we used, we could not get those two extreme side effects under control. She was nauseated for almost 3 1/2 weeks straight, which kept her from eating well. You could say she was on the verge of being malnourished. Her caloric intake was more than likely down to 200-300 a day, a fraction of what was normal for her. The pain and nausea came to an excrutiating head on the morning oImage via Wikipediaf December 8th. I called Dr. Tarhini's P.A., Jan, and told her what we had been experiencing and how we couldn't do anything for her, and she recommended we admit Rach. I totally agreed and brought her into UPMC that afternoon.

For the next week, the doctors at UPMC, made of of specialists in Internal Medicine, Oncology, G.I., and Cardiology all have their attention on Rach. They change meds and doses until they can find what works to ease her pain and nausea. They finally find that a PCA pump that doses her with a constant morphone drip and gives her the opportunity to dose herself with a bolus of morphine every 15 minutes does the trick on the pain (forthe most part). This brings her down from a pain level of 10 out of 10 to maybe a 5 out of 10. Through our 2.5 week stay, the drugs used to try and quell her nausea spells don't ever seem to work. Miraculously, in the last couple of days, the nausea seemed to disappear without any certain medical reason, at least not from any certain medicine. Unfortunately, due to the malnutrition she had and the fact that the hospital pumped her full of fluids, she developed a very serious case of lymphadema. Her weight increased by almost 75%, and she is now quite distended and uncomfortable in her lower abdomen and legs. They have her taking TPN (Total Parenteral Nutrition) to try and build her portien stores back up so she can try and kick the lymphadema.

Rachel was thankfully discharged on Christmas Eve. Upon returning home, we met with the nurse who taught me how to use the portable pumps that she uses to receive her morphine and TPN that keep her pain level manageable and provide her with nutrition, respectively. I have to prepare her PICC lines for infusion, I have to prepare the pump and IV bags, and I connect everything as needed. Along with the infusions, due to her weight increase due to the lymphadema, she is unable to make it to the restroom by herself, and needs someone to help her clean up afterward. I do all of this for her; I have to stay up during the night as she goes to the bathroom quite often at night. Neither one of us is able to get much sleep at all; sometimes we will go 3 nights on less than 4 hours total sleep. It's really quite miserable.

The lymphadema recently has been joined by a case of the weezies. It usually happens when she gets into "sleepy" mode when her breathing changes from awake mode to a deeper asleep mode. It makes me nervous. Is it just a cold? Is the lymphadema moving to her lungs? Are there any of the dreaded mets there? I hate this damn disease and everything associated with it.

As you can see from my list of symptoms she is going through hell right now. I continue to ask God why can't he have mercy on her and ease up a bit? Why all the damn symptoms and why are they all so extreme? I get so enraged at the pain and suffering she has to go through; I am most frustrated because their is little if anything I can do to alieviate them. My hell is watching her go through this. Mix that with my lack of sleep and constantly coming down with bugs (colds and flus, etc.) and I am in a hurt locker.

Like I said in my last post, is it worth it? Being a little darker or having some color to your skin might be nice to you, but are you ready to deal with the consequences? Is your family? Financially can you afford the costs of the medical care required? We have easily racked up over a quarter of a million dollars in medical bills that thankfully so far have been picked up by the military's health insurance, TRICARE. Think about this next time you lay on the side of the pool with Crisco rubbed on your back or when you go to the local tanning salon.