Talked to doctor's office today. They are STILL waiting for all the bone marrow biopsy results to come back from the lab. The doctor is NOT happy, nor am I. LabCorp WILL be getting a call in the next 24 hours.

I am starting a mailing list for those who aren't on Facebook or Twitter, or aren't on often enough to see the update posts, or for those who would rather get the updates by email. You can sign-up below or through the contact page.

Tuesday was "results day" for the biopsy. A wonderful visit to the thriving metropolis of Camden... I will admit, getting to the Cooper campus is rather easy and pretty safe. There is a lot of activity there and good security. It's still Camden...Valet parking, free making it even better at the MD Anderson@Cooper building!!! Note to self - next time put the valet stub in money clip, DON'T just stuff it in your pocket so it falls out when you get your ID cards out!!!

The PET scan shows there are "active" lymph nodes in my neck, armpits, in the chest and in the groin area. We already knew there was some Spleen involvement from it being enlarged.

The biopsy showed "moderate" active cells, around 20-30% - 10-20% is considered indolent, with watch-and-wait treatment and 40-60% active cells being aggressive, requiring immediate treatment. "Staging" is different with this than you normally hear about, I am considered stage 3 due to lymph nodes on both sides of the diaphragm being involved.

Since the PET scan can't detect if the bowel is involved, a colonoscopy is scheduled for tomorrow (Friday, 10/23). As I passed the half-century mark last year, it's time for this anyway. It'll be a "4-fer" - Normal colonoscopy, checking for signs of lymphoma while they are there, prostate exam and checking out the hemi's... At least we are getting our money's worth out of this one! Tonight will be fun, I hope we have enough TP!

The PET scan can't tell if the lymphoma is affecting the bones accurately, either. A bone marrow biopsy is on the calendar for November 2nd.

The doctor wants me to have chemotherapy and a bone marrow/stem cell transplant. Right now the exact course is not known since my doc wants to confer with the transplant people to determine the best approach after looking all the facts and figures. We should have a clearer picture when I go for the bone marrow biopsy on 11/2. 

From what the doctor said there are two approaches he is looking at. The first is 4 rounds of "A then B", given about once a month, followed by the transplant. The other is a lower dose, shorter term chemo and the transplant. I am not sure of the benefits of one versus the other at this point, so many thoughts were going through my mind that day I didn't ask. I'll start another list of things to ask for the next visit. Either way, it looks like I am going to be a part-time resident of Camden and Philadelphia over the next year or so...

This post may be all over the place, my brain is still kinda swimming, but here is what I know:

• Mantle Cell Lymphoma
• Moderately aggressive - 20-30% active cells
• "Stage 3" - lymph nodes on both side of the diaphragm are involved
• Colonoscopy to determine if and extent of involvement
• Bone marrow biopsy to determine if involved
• Chemo and bone marrow/stem cell transplant
• +/- a year of treatment

I've added links to a few things above for those looking for more information.

I want to thank everyone again for the thoughts, prayers and offers to be a donor! I really makes me feel good to know so many of you are will to help! I feel like just saying thank you is not enough, but I don't know what else I can do...

Take time to hugs your kids and loved ones. Get a complete physical every year, "routine" blood work found my counts off...  Take care of yourself, it's not just you who is affected by this shit, whatever it may be. Say a prayer for every person fighting cancer!

​Be Safe, Be Prepared, God Bless!!

Yesterday was the biopsy surgery day. I love how if your surgery is scheduled for 7:00 or 2:00, "nothing to eat or drink after midnight"... OK, then add a little caffeine to that damn IV!!!  I had such a withdrawal headache by the time I go to pre-op. Or just tell us nothing within 8 hours, or 10 hours, or whatever the magic number is so we can eat and drink at the last possible minute!!!!

The nurses were all great, but I'm still a bit baffled as to why one has to be there so early to wait so long... Of course the surgery before mine ran late, so the people who talked to me first were not the people who treated me because they switched my room. Only the surgeon was the same. a 2 pm slot turned into a 3:30 slot in a different OR. I did get a little concerned when the SECOND anesthesiologist said my blood sugar was 190! For starters is was 110 when the nurse checked it, and what patient's info was he getting? Was the other patient getting my info? Was he looking at the right info for ME???  After a few minutes we got it straightened out and all was well.

OH!, the plastic lined "gown" they have you wear for half of forever is the most comfortable thing EVER!!! I recommend them for everyone!  Stylish, too!!

I remember the trip to and into the OR, sliding onto the table and putting my left arm, with IV and half-mile long tubing, onto the support. Nighty-night!! Next thing I knew I was in the recovery area in a great big fog. My throat was a dry as fresh cat litter and felt about the same texture. I nodded off in and out a few times before finally staying "awake" long enough to have some higher thought functions. I chatted with the nurse there and she got me some ice and water. I asked for coffee and after she was sure I could keep the ice and water down without any problems a fresh hot cup-o-joe it was!!!  Even with the IV acetaminophen, I still had a caffeine headache and that sure did taste good!! we chatted for a while, the fog cleared and it was time to go to the Same Day Surgery area, back where I started. Had a pretty good buzz when I stood up to get into the wheelchair, wheeeee!

Another cup in the SDS area(and Oreo's) and they called Pop to come up. After clearing my head some more in their comfy-chair and the discharge instructions it was time to go. They sent Pop to get the car and bring it around to the front while I got dressed. I think they tie the gown the way they do as a challenge to see if you are ready to leave or not! The knots were in the most out of the way places and I'm not really sure they were "knots"! But I passed, got out of the gown and dressed. Another wheelchair ride to the doors and up to the car. Good thing, too, because it would have looked like the nurse was kicking a drunk out!!  

As for the folks doing the roadwork on 55... a few signs prior to the exit you shut down, like maybe the previous exit? You know, a little warning??  NOPE, just 1,582.3 cones and 349 gigawatts of work lights shining into oncoming traffic at the exit we would have normally taken. I should have asked for a water battle for the trip home, dry scratchy throat.. The spicy spaghetti and meatballs were fun!  I really didn't care, they were good on my now 20+ hour empty stomach.

Had a restless night's sleep, up every few hours, sometime just to look at the clock, sometimes to get rid of the liquids I used to sooth my throat. Gave up on sleep around 7. Throat is sore from the surgery and the lovely post nasal drip (my favoritist thing). No pain unless I move my arm and stretch the area, and even then it's not bad. The coffee headache yesterday was lot worse.

Thanks to everyone for their thoughts and prayers, and to the folks at Cooper Hospital. I'll update y'all when I know more!

This past Monday I went to the dermatologist. $35, a half-day of work and a quarter tank of gas to look at me for about 2 minutes and tell me the rash will go away in 2 to 12 weeks with treatment, without treatment - 2 to 12 weeks...
It's apparently caused by a virus and has to run it's course. As long as it's not itching or burning, leave it alone until it goes away.

The surgeon and the hematologist couldn't schedule common time to do both biopsies this coming week so the lymph node biopsy is still on for Tuesday. The hospital will call Monday to let us know a time. Not sure what or when for the bone marrow biopsy, but hopefully some more definite answers after the lymph node is in the lab.

Thanks again for all the thoughts and prayers!!

Finally got a call from the surgeon's scheduler, looks like October 13th for the biopsies... yes, plural. This date is pending both the surgeon and hematologist both being able to be there. The surgeon will take the lymph node, then the hematologist will do a bone marrow biopsy. At least I'll be asleep and get them both out of the way at one time.

I also need to see a dermatologist for a "rash" that has not changed in more than a month, despite OTC treatment.

No time for the surgery yet, depends on the hospital. Since I use a CPAP, I need to go to the hospital for the biopsies. But it makes things easier for getting the lymph node to the lab, it's in the same place. Won't know a time until the day before since it depends on when the hospital space is available.

I have to say that things move a lot quicker when the hematologist's staff gets involved.... I waited several days, left 2 messages and no call back from the scheduler. Called in to the nurse, two calls within hours for the dermatologist and surgeon! I have to say the people at MDAnderson, at Cooper and Dr. Ferber and his staff have been great!!

Thanks again for all the thoughts and prayers!!

Ok, so had the consultation with the surgeon yesterday. He went over the stuff leading up to my being there and explained the process - taking out a lymph node to do a biopsy for further information on my lymphoma. 

He said there were "active" nodes in my neck, armpits and groin. After checking around, he feels going after one in my right armpit would be the best option. The nodes in the neck are close to the salivary glands and the groin nodes can sometimes have some "leakage"... neither sounds like much fun. He also said if the one from the armpit doesn't give them what they need, the groin would be the next option. 

I asked if they were doing a bone marrow biopsy at the same time, but he didn't know. He said he doesn't do bone marrow biopsies, but sometimes my hematologist would come in after him and do one. Still not sure what's going on there...

I also asked about a timeframe for having it done, he said my hematologist didn't make it seem super-urgent, and with the Pope in the area they were limiting how many procedures they could do. So it sounds like a week or two, waiting on the scheduler (silly me to think she would be in the same office at the same time) to call and set up the surgery. And lucky me, because I use a CPAP, I get to go the hospital instead of the surgical center. The plus to that is the lab where they do the biopsy testing is downstairs from the O.R., so it can get there sooner. 


No call today, so I wait until next week...


Thank you ALL for the kind words, thoughts and prayers. They all help!!

IF you can, please support Light the Night. The Southern NJ chapter is having their fundraiser walk October 17th. You can get more information here.

We already have plans this years, but I hope to participate next year, maybe you can join me and we can have our own team!

So, how did this all come about? Due to my excellent lifestyle, I am a borderline diabetic. So once a year or so my endocrinologist does a complete blood workup on me. This year the CBC came back low. Tests were repeated to see if it was a lab error, nope, still low. Referred to a hematologist, even MORE blood work... so far enough to make a vampire jealous!!! These tests showed some lymphoma cells, oh joy!!  Of course I have to get the rarest of lymphomas, Mantle Cell Lymphoma...

Next was a CT scan, then a PET scan. Now I need to have the lymph node biopsied to determine how aggressive the cancer is. Treatment varies from "wait & watch" for indolent (not aggressive) to chemo, radiation and who knows what else for more aggressive types.

How do I feel? I don't "feel" anything other than my spleen, but only because they told me it is enlarged. I can feel the lymph node in my neck and my armpit, they are about lima-bean size. Other symptoms are fatigue and bloated/gassy feeling... I'm 50, overweight and out of shape, and I get gas from a glass of water, so how would I know? The only other thing is the fever/sweats. They come on at any time or place, which is especially enjoyable when you are out somewhere and the sweat starts running down the back of your head and onto your face!

I didn't tell a lot of people at first, mostly because there wasn't, and still isn't, very much to tell. I figure this would be the best way to get the same information to everyone. So keep me and all cancer patients, survivors and their families in your thoughts and prayers and I'll keep you updated as I can.

Be safe, be prepared, God Bless

I have a consultation with the surgeon Thursday (9/24) to set up the biopsy(s). Still not sure what or where or how many for the biopsy(s), I guess I'll find out then!