<![CDATA[My journey with lymphoma

<![CDATA[My journey with lymphoma - Blog]]>Thu, 09 Apr 2020 22:32:45 -0400Weebly<![CDATA[A Merry Christmas!!!]]>Sat, 17 Dec 2016 19:46:12 GMThttp://great-bay.com/blog/a-merry-christmas

So it's been quite a while since I did an update, mostly because there wasn't really much to post.
I went back to work August 8th on light duty, can only do admin stuff. No high heat, no respirator, no strenuous work.
Had my check-up in October but we held off on the maintenance Rituxan due a sinus infoection. THAT is a whole different story of which I am still dealing - 3rd round of meds... UGH Finally got the maintenance meds in November, no issues.

Well... Went again yesterday (12/16/16) for another check-up, and CLEARED FOR FULL DUTY!!! Still need to be cleared by Medical at work and the Occ Health folks for Vineland Volunteer department, but what it really means is that I am healthy!!! I can stop the prophylactic meds finally and just get down to the Metformin for my sugar and the meds for the sinus crap.

Thursday I saw the Endocrinologist and she was happy with my numbers, too!

So it's pretty much back to normal, or whatever that is for me!

I do want to thank everyone for their support, thoughts, prayers, but especially Lisa and my kids and my parents who were with me the whole time, as well as my family; the guys at work for their generous support, Vineland Fire Comapny #1 for digging us out after the big snow and everyone who came to visit, especially Pastor Steve, Bret and Bret and a very special Thanks to Joey O for the OH-SO-WELCOMED Tony Luke's breakfast and awesome day out on the boat!!
I also want to give a special thanks to Christina, one of Dr. Ferber's clinical nurses. She went above and beyond what I expected helping me, even replying to emails from her phone when she was off! All of the staff at MD Anderson and Cooper were great. And I couldn't aske for a better doctor than Dr. Ferber!

I love you all!!

Merry Christmas and a Happy, Healthy and Blessed New Year!

]]><![CDATA[Back to work!!]]>Wed, 03 Aug 2016 19:39:54 GMThttp://great-bay.com/blog/back-to-workAfter nearly 9 months, I have been cleared for light duty. I go back to work next week. Per the phone call, my labs and PET scan look good. I have an appointment next Friday (8/12) to get the details and my first quarterly Rituxan maintenance infusion.
I'll post more after I get more info!

Thanks all for you support through this journey!!
]]><![CDATA[I rang the bell!!!]]>Tue, 14 Jun 2016 13:10:28 GMThttp://great-bay.com/blog/i-rang-the-bell

A little after 1 p.m. Saturday June 11th. I rang the bell 3 times to signify I made it through my chemo/cancer journey and I rang it LOUD. There is a video of me ringing the bell on Facebook, and I can send a copy if you want. What a great feeling!!!
I made it through one of the toughest chemo regimens out there and although I did have a few rebound hospital trips, overall it was uneventful. I am not quite done yet, as I need to make it through the next 2 weeks without another rebound. We have a plan to avoid the rebound and hopefully it will work.
In about a month I will have another PET scan as a follow-up, but as the last one was good, I don't expect anything less this time.

I feel like one of the patients I used to interact with back in the ambulance days... Fortunately most of these are precautionary and I will be done with them sooner rather than later. UGH!!!
My short-term goal is to make it through the next 2 weeks without another ambulance ride and/or hospital stay. The weekend has typically been my downfall, so I will be laying low.
Long-term will be to gain my strength and stamina back and get back to work, even if it's on light duty. I have had enough sitting around, everyone thinks it would be cool, until you are the one who is sitting and can't do anything productive.

Once again, I would like to thank EVERYONE for the support, thoughts, prayers, words, texts... Having all of you with me along the way made this journey easier. I want to thank the doctors, especially Dr. Ferber and his staff for being like the Energizer Bunny and not stopping. If they had a question, they reached out until they got an answer. If I had a question, it was answered. And the nurses and techs on North 9 at Cooper - simply the best. I can't begin to name them all, but they were always there and did whatever was necessary for their patients. It takes a special person to be an oncology nurse, you all have my heartfelt thanks!!!

Most of all I want to thank my family for being here the whole way - Lisa, Nan & Pop, Robyn, Jeff, Abby, Jess, Terri, Vicki, Dee... I couldn't have made it without you!! I love you all!!!

]]><![CDATA[3 for 3]]>Fri, 13 May 2016 14:18:46 GMThttp://great-bay.com/blog/3-for-3Well, I am 3 for 3 when it comes to unexpected hospital admissions after the B cycles. I went last Monday to the doctor's office for bloodwork to see where my counts were. While waiting for the results to see if I needed to go for a transfusion, I started feeling bad. When the nurse came out to talk to me I asked her to go to the hall to discuss a few other things I had been feeling. She said all my counts were low and I should go that day for a transfusion. I said that would be a good idea but I didn't think I could drive, as I started seeing stars... UGH!! She and one of the techs took me to a room and put me on the exam table. I felt better once I laid back, but I still didn't think I could drive anywhere. another ride courtesy of Voorhees FD, to Insipra Voorhees this time. After talking to the ED Docs, they said they were going to chat with my doc... This gave me the time to sleep for about 2 hours. It was decided that they were going to admit me and give me blood and platelets. They finally gave me blood sometime around 5-6 and also said I was going to transferred to Cooper. Once at Cooper (right at shift-change, sorry..) I got more fluids, another chest x-ray and started on antibiotics because I had a fever along with the low blood counts. The x-ray showed some pneumonia, but fortunately it was caught early this time and the fevers came down pretty quickly. I was finally able to come home Friday with oral antibiotics.
I saw my doctor this past Monday and things still look good. He said this coming Monday for round 4A, but I asked if we could push it until Wednesday so I could be there for Jeff's senior day for volleyball. He said sure, two days won't matter. So I get to see him all spiffied up for prom tonight and be there for senior day Tuesday then in for 4A. The A cycles aren't that bad, we will see what the next B cycle brings, maybe I'll make reservations for the week after I leave!
Things are still going as planned, just postponed by a week.

Be safe, be prepared, God Bless!!!
]]><![CDATA[I THINK I SEE THE LIGHT AT THE END OF THE TUNNEL!]]>Sun, 17 Apr 2016 23:12:01 GMThttp://great-bay.com/blog/i-think-i-see-the-light-at-the-end-of-the-tunnel

Over the last few weeks I have been in touch with both my doctor and the Penn doctor. I have also had a bone marrow biopsy and another colonoscopy. Both of these tests have come back with NO lymphoma!!!! YAY!!!
The Penn Doc requested to review the PET scan images. He didn't feel the written report matched what he was seeing with me and the other test results. He reviewed my case with their team and conferred with my doctor and they have decided since both the bone marrow and colon biopsies have come back clean and what they saw (or didn't see) on the PET scan images, I do not need a stem cell transplant. We are going to pick up where we left off, with 3B of the 4-round chemo. They are also changing the dosage of the B-cycle medication they think is giving me the issues after I get home.
I go in this Tuesday (4/19), and 4A should start on May 10th, 4B on May 31st if all goes according to plans (and I have my calendar right). June 4th will hopefully be my last day as a part-time Cooper/Camden resident!!!
After that it will be quarterly "maintenance" with Rituxan, which they say has shown to help stop or slow a recurrence.
So it does look like I can see the light at the end of the tunnel!! I appreciate all the prayers, thoughts, texts, calls, visits... They all help!!!

]]><![CDATA[Maybe one more "B"]]>Thu, 24 Mar 2016 23:26:04 GMThttp://great-bay.com/blog/maybe-one-more-bHad another consultation with the doctor from Penn today. He wants me to have another colonoscopy to see how the lymphoma there has responded and he wants to see the images from the most recent PET CT. He wants to show them to their "review board" and see what they say. He thinks even though the report says "partial response", he thinks there is possibility that I have had an "excellent response" to the treatment, but the images will tell more.
After the colonoscopy and PET review, they will decide if I am going to get just an "A" cycle and Rituxan maintenance or an "A" cycle and Stem Cell Transplant. Whether or not I get another "B" cycle will be determined, as they really wipe out my blood counts.
I have an appointment with Dr. Ferber Monday, so I'll know more then about when the colonoscopy and next "A" cycle will be.
]]><![CDATA[3B or *NOT* 3B]]>Fri, 18 Mar 2016 18:58:02 GMThttp://great-bay.com/blog/3b-or-not-3bRound 3A went well with no unusual incidents, all as expected!
Saw Dr. Ferber Monday and it looks like some changes in my treatment plan. I am still a little confused on a few things and need to talk to the HUP Doctor again, but I'll pass on what I *think* I know:
We are going to skip the B Cycles, or at least 3B, then after 4a they are looking at harvesting stem cells (SC) in case they are needed. The B Cycle may interfere with the harvest, but again, I'll more info after talking to Dr. Svoboda (HUP) on the 31st.
My Bone Marrow Biopsy is showing 100% clear, which is another reason they are looking at taking advantage of the window for SC harvesting. Still unsure if/when a PET scan and/or colonoscopy would be done during this time frame. The restaging PET scan is still showing some lymph node activity and the spleen is still active a bit but all have greatly reduced in size.
Since I ended up in the hospital after both 1B & 2B, this change is NOT breaking my heart. The B cycle really kicks my ass and puts me down!
Currently I am getting blood tests twice a week since I my body like to use up my hemoglobin for some reason and we all want to see that I get blood as an outpatient and not having another unscheduled hospital stay. The downside is that I have to travel to Voorhees (or Camden) for the type/match test one day and be at the Short Procedure Unit by 7:30 the next morning, along with the regular test around the corner at LabCorp. Right now I am on the schedule for blood Tuesday morning, with the thinking by then I will a unit or two. I'm hoping I can get away with a trip to Voorhees Monday and NOT Camden Tuesday. Now I remember why I would be at work an hour and a half earlier than my start time at the ShipYard - to avoid the idiots on 55/42/676!!!
So I think I am "off" until April 19th, which is when I am due for 4A, but I have a call in to my doc on that. Not sure if they are looking to pull any of this up sooner, push it off to fit into HUP's schedule, or what. I guees between my visit with my doc on the 28th and HUP doc on the 31st, I'll know a lot more then!!

Thanks for all the support and I'll let y'all know what I know when I know it!!

]]><![CDATA["B" cycles, results and 3A]]>Mon, 07 Mar 2016 16:28:37 GMThttp://great-bay.com/blog/b-cycles-results-and-3aSo it seems with the "B" cycle being so immunosuppressive, they kick my butt! I ended up back in the hospital two weekends ago due to my hemoglobin count being about 4 when it should have been above 12... I tried to get to hospital via family, but I was too lightheaded when I sat up, had to call for an ambulance. Anyone who knows me knows I REALLY needed help if I said to call EMS.
Got a ride to Virtua Vineland where they consulted my Cooper docs and started a unit of blood and I was transferred to Cooper for further treatment. I lost count of how many units of blood I got, but it was at least 7. They couldn't, and still don't know why my numbers kept dropping, even after the transfusions. Thankfully now my numbers (as of last check) are a little low, but stable. So that was a three-day stay in the hospital that I wasn't expecting, and I just laid low for the last few weeks.

This past Wednesday I had a PET scan and Thursday was a bone marrow biopsy to restage everything and see how I am responding to treatment. Copying from the PET scan report:
IMPRESSION: Since September 14, 2015:
1. Significant treatment response of diffuse hypermetabolic
adenopathy. Deauville score: 2
2. Decreased hypermetabolic activity and size of the spleen.
Deauville score: 3
Good news!!

I haven't gotten the report from the biopsy yet, that should be back by tomorrow (Tuesday).

Speaking of Tuesday, it is time for round 3A starting tomorrow. A cycles aren't so bad, but I think I'm going to become a hermit after the next B cycle!!!

Thanks to everyone who has checked in on me, said a prayer, had me in their thoughts... I feel all your love and support and it helps me keep a positive outlook and spirit!!

Be safe, be prepared and God Bless!!
]]><![CDATA[Mid-cycle (I hope!)]]>Sun, 14 Feb 2016 18:56:24 GMThttp://great-bay.com/blog/mid-cycle-i-hopeSo here we are, "hopefully" mid-cycle.
I haven't posted an update because there wasn't much TO update. Round 2A went well, only issue was the Decadron at home, tore my stomach up!! On meds to prevent that now, HUGE difference.
Just got home yesterday (2/13) from 2B, again, no issues. The methotrexate level came down to an acceptable level quickly but I did need to get a unit of blood before leaving due my hemoglobin being a little low. SO nice to be home in your own surroundings, bed and bathroom!! I guess my body is getting used to the meds, as the side effects are less and don't last as long. The worst was the weird taste food and especially water would have, but thankfully that is very minimal now. (The hospital food still starts to all taste the same. Mom and Dad rescued me with a wonderful fat hoagie this past week! THANKS!!!)
Last time after the "B" cycle is when I got the fevers and had to go back in for the IV antibiotics. THAT visit sucked more than all 4 chemo trips combined. Therefore I am taking it one day at a time this week. I am also on antibiotic and antiviral meds to help prevent a recurrence.
Tomorrow is Rituxan and Neulasta day, I get to hang out in Voorhees the better part of the day. The PET Scan is scheduled for the 23rd and I guess we will see if they want another bone marrow biopsy after that.
Overall I feel really good, although I still get a little lightheaded if I stand up too quickly. I have to remember that lest I take a header.

I did want to say a special THANK YOU to the fellas in Vineland Fire Company #1 for clearing the snow during the big storm while I was in the hospital and to the fellas at PSFD for the hot dog sale. You guys are all incredible, I am very humbled and thankful!!

The hope is that the PET Scan will show positive results and I will complete rounds 3 & 4, be in full remission and see what medical miracles the future brings!

Thanks for the cards, thoughts, prayers and kind words. They all help keep my head where it needs to be. Love you ALL!!!
]]><![CDATA[On the right path]]>Tue, 12 Jan 2016 16:02:25 GMThttp://great-bay.com/blog/on-the-right-pathLast week I saw the doctor at Penn Thursday and then my doctor Friday. They agree that we are on the right course.

I’m going to backtrack a little first - the original treatment plan was for 4 courses of Hyper-CVAD chemo and possibly a bone marrow/stem cell transplant. I’ve finished course 1A & 1B and @a is scheduled fro start January 19th. after 2B is done, I will have another PET scan and possibly another bone marrow biopsy to re-stage my condition.

The Penn doc said he would recommend one of 3 paths, depending on what the staging results show. First, as long as I am showing good progress and remission, continue with the other 2 courses of Hyper-CVAD. He said there is not enough data to indicate a stem cell transplant would be worth it - it hasn’t shown much either way. This should give me 3-7 years (or more) before the lymphoma becomes active again, and by then who knows what the newest treatment options will be. A maintenance plan of Rituxan may also be a good idea.
Second path is if I am showing partial remission. He said this is where a stem cell transplant may be effective. The chemo is working, but the body needs some help, so a fresh start with the stem cell transplant may be of benefit.
The last path is if I am not showing much of a positive response to the chemo at all. In this case he recommended stopping the chemo (since it doesn’t seem to be working) and trying one of the new meds on the market.
Both doctors agree that I appear to be responding well to the treatment, as my spleen has gone down in size and the lymph nodes that were palpable before are pretty much not now. They also both agree that most likely we are going to go with the first plan, but the re-staging will tell the tale. The Hyper-CVAD chemo is a more aggressive treatment, and they said not everyone can tolerate it, but with me being younger and healthy, it is the best option for me.

Since it took about 2 months to get through the first round of chemo, it looks like about another 6-8 months of treatment and testing. After it is all done, my doctor said I should be as I was before all of this mess.
I want to thank you all for the offers to help, the thoughts and prayers, they are truly appreciated! Thankfully, I am generally mobile and once my immune system rebounds I can get out and about some.
]]>