Sitting in traffic wondering how anybody could possibly live in the Bay Area without owning an urban assault vehicle reminiscent of something from Mad Maxx for redemption cast upon rude idiotic drivers I will never know! While commuters are frustratingly obnoxious my focus channels instead towards taking that initial step into Stanford’s Cancer institute.
It will be emotional for sure, Jacy is nervously anticipating our meeting with the Bone marrow Transplant team. There are so many unknowns in regards to facilities, rooms, and living arrangements for both pre and post-transplant. What will her doctor be like? How many people will be involved in this process? Has anyone determined if her brother is a match? If he is not, what is the prognosis for a match and how long until we know? What is or is not covered under our insurance since we are leaving the Kaiser system? What is the real number in terms of time away from work?
I am nervous too. It has been a very long time since I set foot in this place, I hoped to never come back here again so I am praying for the best. Will I be strong enough to keep her spirits up if we hear things we don’t like? Do I have the ability to keep quiet and listen, truly listen to all the information while reading my wife’s responses and emotions ensuring she gets the most out of this meeting while feeling my support?
Once on campus it’s clear this will be no easy arrival, there are multiple construction projects in various stages of completion. No parking what so ever, and traffic complete with traffic monitors moving us slowly from one place to another. Finally after being directed from one street to the next we come upon the front of the Cancer Institute. Carefully pulling up I let Jacy get out to check in since we are border line late thanks to 35 minutes at the Bay bridge toll plaza. As I circle around I find the front entrance is for valet parking. Yep that’s right valet parking! This place looks more like an entrance to a 5 star hotel complete with black jacket, bow tie wearing servants. Turning the car over and receiving my return ticket, in my best dry humor tone I let the valet know to take it easy in the corners, not many can handle a car like ours and temptation is great! He nods, smiles, says thank you and slowly pulls away in our Honda Odyssey. Pretty sure he had no idea what I was talking about or mumbled asshole as he drove away. Either way good show old boy, for keeping that beaming professional appearance.
Walking inside the Cancer Institute my impression has not changed. Glass, marble, wood, brass, and staff members dressed professionally. It is a sight to behold. Making my way down to our appointment area I also can’t help but notice how busy it is! This place is vibrating with expectations, anticipation, and exasperation; seriously this place is buzzing with intensity! Cancer has become a business for sure, and business is booming! Meeting up with my wife, we are called into an exam room where we are introduced to one of Stanford’s social workers. She is a doll, who asks us questions covering our lives at home, where we live, how we live, how many children we have, is there a solid support system in place, do we have any animals, what kind of animals, what do we know about transplants? Jacy and I have both done our best to be informed on all aspects of Leukemia and it showed during our interview.
Dr. Muffly walked in and introduced herself. We both liked her immediately! She is very kind, warm and friendly. To be honest, not what I expected, I don’t know why, there is no real reason why and even as I am typing this it bothers me that my predisposed expectation was somewhat skewed. Needless to say we had a wonderful meeting. When we asked about jacys brother being a match, she picked up the phone without hesitation and called her assistant who after a few seconds of looking through data informed us he was not. My heart sank a bit, but Dr. Muffly insured us it was going to fine. Only 25% of full siblings are an actual match anyways, so the odds were already against us.
We talked about Jacy’s form of Leukemia, what it meant for the short and long term. We discussed the process, where I also learned that actual bone marrow is only used in specific cases. The latest advancements are centered on Stem-Cells through an Allogenic Transplantation.
“In an Allogenic Transplantation, a person’s stem cells are replaced with new, healthy stem cells obtained from a donor or from donated umbilical cord blood. Chemotherapy or a combination of chemotherapy and radiation therapy is first given to eradicate cancer cells, to suppress the patient’s immune system, or both. The new stem cells are then infused into the patient’s bloodstream through an intravenous catheter, in a procedure that is similar to a blood transfusion.”
Very, very cool stuff! The donor is given a shot to hyper activate their system, creating active stem cells released from the donors marrow. After a week to ten days that blood is collected from the donor and shipped straight to its recipient. No more pain or discomfort from the actual bone marrow procedure. Once the infusion is complete the patient is kept for another five days in the hospital then seen on an outpatient status. Here is the caveat. Once in outpatient status the patient cannot live more than an hour away. We live two hours away so home is a no go. The hospital provides housing both near its campus and in San Jose. Jacy needs to be close for monitoring. A fever, severe nausea, or what they refer too as graft vs host disease are all issues to be diligent through observation.
“Graft versus host disease (GVHD) is a common complication following an allogenic tissue transplant. It is commonly associated with stem cell or bone marrow transplants but the term also applies to other forms of tissue graft. Immune cells (white blood cells) in the tissue (the graft) recognize the recipient (the host) as “foreign”. The transplanted immune cells then attack the host’s body cells. GVHD can also occur after a blood transfusion if the blood products have not been irradiated or treated with an approved pathogen reduction system.”
Any signs of these and she needs to come right in, day or night. The total time frame for being away from home is 3 months.
Let that sink in for a moment. Your whole world is feeling out of control, statistics flying left and right, in the hospital then out of the hospital in combination with a gigantic fear all will fail leaving you to die. You are told you cannot be home with your children, family, for three months. It is easy to be reassuring, it is easy to scoff and ramble off witty lines like: it’s only a blip in time, you will get through this, be back home and never look back! But when it is you, trying to wrap your mind around missing more of your children’s activities, seeing and interacting with our farm and everything you know. It is a tough to understand, which leads to the invariable; why me?
When she comes home, she now knows, she will not be able to work for a year and even though she is home, no animals (dogs exempt) for up to six months. During this time (from graft to home) she will wear what appears as Darth Vaders entry level mask. This HEPA or High Efficiency Particulate Respirator should keep all viruses and organisms from entering her body. She must also have nothing but fresh food prepared by her caretaker for every meal to ensure no contamination. Wait! I said caretaker! That’s right! She will need a 24 hour a day caretaker, someone preferably a family member to monitor her, feed her, and drive her (yep banned from driving for 4 months) to all her appointments.
This was quite a bit of information and even though we knew most of this from doing our homework, it was more than we were really prepared to acknowledge.
The kicker through it all? The one thing that stuck with me? Was those damn statistics again! I have always said; Statistics are to a mathematician what a lamppost is to a drunk. Just something to lean on. But for some reason hearing straight from the doctor’s mouth, it is a 50/50 chance for recovery. Hit me really hard. I never let it show, but like a sock in the gut is just kind of took away my air and left me sitting there for a moment. I know there are millions of factors, (read my last blog) I know my wife is a fighter, I know all the positives one can spew, but until you have sat there, focused on the words coming from your doctors mouth it just isn’t the same.
It was a long painful car ride home. She cried, we held hands, I did my very best to comfort this woman I love. The prognosis still remains great! But nothing hurts more than hearing your wife tell you she feels as though she has been handed a death sentence. She has a right to feel that way, she has a right to be sad, and she has a right to be angry at everything. This is something I cannot fix, this is something we need to have faith over. This is something that will strengthen our marriage even more. She will come away from this in remission. I just know it.
This morning we received some great news! There are four donors that are a match! All four have been contacted for further blood work! Our first step to winning this battle, the hardest step that so many never get to take! We have a match! I urge you, any of you to please register with Be the Match! You may have the honor of saving a life. In this case someone did, and it will save my wife’s life!
She also called me this morning to tell me she is back in the zone! All positive thoughts from here forward! A little time in church did a woman of faith wonders!
God Bless everyone for the continued support.
4 thoughts on “A trip to Stanfords Cancer Institute”
My husband was just diagnosed with Leukemia on Tuesday. He is 39 and we have a 15 month old. I admire the strength you and your wife have had during this illness. My thoughts and prayers are with you and your family.
What form of Leukemia? Any questions you have I am more than happy to help you with. Negotiating the reams of information you will receive can be overwhelming, so if you need an ear please, please just ask! I am a great listener!
Many thoughts and prayers continue for you all.
Around Thanksgiving of 2008, I found a small, hard lump above my left breast (I had just fnsiihed reading the book Life Wish by Jill Ireland who died from breast cancer so decided to do a self exam, just in case ) and after much testing and sending my biopsy all over the place, I finally got diagnosed with Non-Hodkins anaplastic large-cell lymphoma. What a mouthful! I was scared out of my mind. I was newly divorced with a teenage daughter and facing 6 months of chemo, alone. But I really wasn’t alone, thanks to facebook and myspace and all the wonderful people who stepped forward to help keep my spirits up. Your Angel was one of them I lost my hair after the first treatment, but thanks to a good diet and LOTS of immunity boosting suppliments, I really didn’t feel all that bad. I would have a few oogy days after the chemo, but I never did get violently ill like some people do. Actually, I felt quite normal most of the time The brain gets a bit mushy after a few treatments. Makes it hard to think sometimes, and I lost my sense of taste and smell which are finally returning 2 years later but all in all, it was just a bump in the road of life. I really ended up learning a lot about myself and what’s truly important, and like you said, I found out that I’m much stronger than I ever thought I was! You will find your inner strength too, Rose! Never doubt it!!! xo