08/29/10 Sunday: On Friday, Jenny and I headed out to LI for the weekend. We figure we will continue to do the things we normally do so long as Jen is able. Since her diagnosis, the doctors put her on a steroid. This is having a fantastic effect! She has far more energy now than she has had over the last few months. She is coughing less and breathing easier. Of course, as those who know my wife well, she is now pushing herself harder….. much to my chagrin.
On Saturday Jen went to the Old Cove Yacht Club cocktail party (I opted to stay home). Latter we went to the annual Cutchogue Fire Department chicken BBQ. We both had a wonderful time. It was great to see all our friends. It gave us both a chance to forget about Jen’s disease for a few hours. And with her new found energy, I spent a fair potion of the night chasing her around like a 4 year old.
On Monday Katie will be heading back to school. This is going to be tough for all of us. I am not looking forward to sending her back. But as Jen and I have told her, there is no point in taking the semester off. We have a long road ahead of us and life moves on.
As a side note, I decided that once Jenny loses her hair, I would shave my hair off to as a show of soroity. Having had some time to mull this over, I am not sure if this was such a good idea. But hey, the way things have been going, it was all going to be gone soon anyway. Though it does kind of take the need to use Rogaine out of the equation….
I moved Jenny's Calendar for treatment to a separate blog page. I think this will be easier all the way around as it seemed obtrusive impeded in this blog.
08/27/10 Friday: I set up a calendar of Jenny's treatments. I did this to link to my calender and help me stay organized. The calendar is public to all.
08/26/10 Thursday: First and foremost Jenny and I want to thank all of you for your support. We have received numerous calls from friends, family, neighbors and coworkers offering support and help. We (me) are not proud. So be sure if there is something that we need or could use help with, we will ask.
Today we drove into MSK for an 11:45 follow up visit. Based on the yesterday’s PET scan, it is relatively certain that Jenny’s lymphoma is a Bulky Stage II meaning it has not spread below the chest. The “bulky” refers to the tumor size. However, without another biopsy, Dr. Moskowitz is only 80% – 85 % confident that it is Hodgkin verse non-Hodgkin. Doing another biopsy is not recommended as it could only aggravate Jen’s condition. The PET scan also showed that there are infected lymph nodes throughout Jenny’s chest pressing on her bronchial tubes which are inhibiting her ability to breath. There also appears to be a lymph node lying on the lining of her heart muscle.
The bone marrow biopsy is not yet back from the lab. It is expected to be available on Tuesday 08/31/10 when treatment will start. Hopefully it will be negative but regardless of this result, the course of treatment will not change.
This is an aggressive lymphoma (http://www.cancer.gov/dictionary/?CdrID=45588) and because he is not 100% certain that it is Hodgkin verse non-Hodgkin, Dr. Moskowitz recommends an aggressive treatment which was developed in Germany called BEACOPP (http://www.cancer.gov/drugdictionary/?CdrID=631451). This is a highly toxic process that is relatively new. Though taxing, it has shown very good results. Dr. Moskowitz recommends this treatment as he wants to be sure to get all the cancer. Treatment is to begin on Tuesday 08/31/2010. Here is what we can be expected;
Severe dietary restrictions (especially aged cheese and red wine)
Weekly trips on Tuesdays to MSK for Chemo treatment for the next 6 months (possibly only 4 depending on results) with monitoring and including:
Radiation
Blood transfusions (one next week)
20+ pills to take a day
Tiredness and weakness
Loss of hair in two weeks
Although this is going to be a very difficult treatment, initially Jen should start to feel better as her body has adjusted to being in a chronic fatigue state. So for the first 2 – 6 weeks she should feel much better and then she will feel worse than she does now.
As a note, now KT and Jenny are discussing hair styles. I would personally like see her as a red head! Katie and Al measured Katie’s hair length in the examining room to see if it’s long enough to cut for a wig. Also we are thinking of having a “name that girl” contest once Jen chooses a wig.
08/25/10 Wednesday: Today Jenny has a 6:00pm appointment at SK to redo the PET scan. Our neighbor Julie is taking Jen to this appointment. As it is only a test and not a doctor’s appointment, she and I felt it made more sense for me to stay home and get things organized.
We will be staging this recover out of Flemington. Being and staying organized is a problem. The more I clean and organize, the messier things seem to be. For now I just need to stay at it until we rearrange the bedroom and den to be more patient friendly.
Jenny’s treatment is expected to begin next week. So, one last trip out to Long Island this weekend. After that, we will take it day by day.
8:00pm: Jen returned from SK. All went well. They had told her that if she got there by 5:00 there was a good chance they could take her. This turned out to be the case. She is now home “working” the telephone…..
As a side note, one of Jen’s friends’s offered us the use of her husband’s apartment in NYC a few blocks away from SK. This is a terrific opportunity. I connected with him today and picked up a key. We have an appointment tomorrow at SK @ 11:30 to discuss Jen’s treatment. All four of us are going (kids Al and KT). I hope we may have the time to stop in and check the apartment out.
08/24/10 Tuesday: It is now around 1:00 and we are at Sloan Kettering. They are very organized here. Our appointment is for 2:00 and they are moving us quickly through blood work vitals and lab test. Now we wait.
3:00 Met with the doctors. Craig Moskowitz MD is the lead doctor. It looks to him that Jenny has Hodgkin lymphoma type “B”. Unfortunately the prior tests that were done were not of the best quality. This cancer normally happens to younger people… those under 28 and usually collages age.
This is affecting the white blood cells (B cells). She is either in a “bulky” stage II or stage IV. This has yet to be determined. Jen’s tumor is about the size of a grapefruit. The tumor has maximized its blood intake; basically it is dying on the inside as it continues to grow large. The biopsy that was done two weeks ago was not of a very good quality. This may be because the center of the tumor is deteriorating. Additionally because it was a needle biopsy, there was not much material to test and what was taken has been exhausted.
A bone marrow sample was taken which is standard for lymphoma. The PET scan that was done two weeks ago is not totally clear. She will have to do it again tomorrow (08/25) at 6pm. Based on what they know, the cancer is around her left collar bone and the right part of her larynx. Additionally, there is a shadow in her right lung and on the right side of her bowel. It is not clear if these are cancer or infections or simply inflammation. A new PET scan will help to determine this.
Jen’s red blood cell count is low at 8.4. And her hemoglobin is very low. She will more than likely need a blood transfusion within the next two weeks.
Although aggressive this a treatable disease. As such treatment is expected to begin sometime next week. Survival changes are 2 out of 3. Once all tests are complete, Jenny will start talking steroids.
08/23/10 Monday: Spent this morning working out of the kitchen. Jenny went to the school to get things set for when school starts. Katie went in to help her around 12:30pm.
Jen and Katie came home around 3:00pm. She spends a lot of time coughing. It is tough to watch. She went upstairs to rest. Gloria stopped by to see Jen. I w?ent to see if she was awake. Turns out that I woke her up by poking my head into the room.
Around 6:00 I went for a nap. I was awakened by Jenny having a violent coughing fit where she starts to dry heave. I tried to help her by rubbing her back. She has not been taking her medicine which is annoying the piss out of me. Even more annoying is she is not keeping track of where the medicine is! This has me on a wild goose chases looking for it. I have asked her several times to keep a better track of it to no avail. It hurts me to see her in pain… and it hurts me when I get angry at her for not trying harder to keep track of these things.
Tomorrow we go to Sloan Kettering for a 2:00 appointment. We need to be there at 1:00 to register. We need to leave the house around 11:00 to be there by 1:00. Hopefully we can get moving on treatment. This waiting around is frustrating both of us.
08/22/10 Sunday: Spent all morning cleaning the inside of the house especially the bedroom. A neighbor, Gloria dropped buy and helped vacuum the first floor and screened in porch.
Jenny came home today around 2:00. She seems to be in good spirits and happy to be home. Katie drove her home in Jen’s car. Friends of Katie’s drove Katie’s car back home.
I want Jenny to take it easy. But those of you who know her know that she can be stubborn. She insists on doing certain things. I want her to rest up to save her strength to fight the battle ahead!
08/21/10 Saturday: I am expecting Jenny to come home this weekend. She has been out at the summer house under the care of her sister Annie. Friends have also been pitching in. Although Jenny is not in dire straits, she has regular and sometime violent coughing fits which does not allow her to breath. She has lost a lot of weight (about 30-35 pounds). Our home in NJ needs to be cleaned up. So today I am focusing on the yard. I do not want Jenny to come home and have it looking like “Tobacco Road”
Background: Since around 03/2010 my wife jenny has had a cough. Although she went to the doctor a few time, the cough continue to get worse. Finally in 07/2010 she was diagnosed with cancer. She has a malignant four inch tumor located in the center of her chest. After further test it was determined she has Hodgkin Lymphoma B.
