Almost Done

Hey guys, just wanted to give a quick update on my treatment.  I've finished my last chemo treatment and I'm feeling great!  No more nasty side effects EVER!!!  I'm now working on my strength and stamina and in just a few months I'll be sporting around a stylish (very) short hair style, I can't wait!

I recently had a consult with a radiation oncologist and he as well as my medical oncologist highly recommended radiation therapy now that I've completed my chemotherapy.  Radiation is needed because I had very bulky cancer tumors, a few that took longer to get rid of. Radiation will target these areas to get rid of anything left over that can't be seen on the PET scan.  I get a nice little break before I start treatment on August 4th.  I'll have treatments every weekday for 3 or 4 weeks.  Good news is that there should be very few side effects.

Thanks again for all your well wishes and prayers!

Holly

Last Chemo Treatment Delayed

Just wanted to let everyone know that because of my little side trip to the hospital, my 8th chemo treatment was delayed one week.  It will be on June 23rd.  This will be my LAST chemo treatment!!!  I'm hoping recovery will go a little smoother :).

Holly gets a hospital stay... but is home

I got a call from Holly last Wednesday that she had a fever and the doctors wanted her to go to the hospital since her levels were near zero.  Unfortunately she was home alone with me in Baltimore and the girls in Chattanooga.

Fortunately, Laura next door was able to get her to the hospital that night, as well as take care of Holly's new best friend, Boone.  The girls were able to get home the next day and I was home the next day after that.

Her fever dropped, but her levels were very slow to fight back, so Saturday  Dr Herzig gave her a "growth factor" shot that jumped her levels up overnight.  She went from a 0.8 to 7.4 overnight (she started at a very low 0.3) and was sent home Sunday, after 4 nights.  Normal range is 4.5 to 10.0

Currently, she's doing well, but still feels weak and drained.

The Scan is Clean!

Holly got confirmation from Dr Rodriguez today that her latest scan is clean.  Its hard to say that she's cancer free however.  She needs to do 2 more chemo cycles and then another scan 3 months after that.  If the scan is clean after that, it will be considered in remission, and hopefully it won't return.

The doctor said no need for radiation, or bone marrow transplant.  Whew!

So we are all very pleased in the Johnson household, that I can assure you.  Now we just need to get Holly through 2 more cycles and get her health back to 100%, which can take awhile.  Chemo does horrible things to your body, and it will take awhile for her to get back to her old self.

Jeff

Scan Results......

Holly got a preliminary copy of her latest scan, and it appears to be very good news.  We will report more as we get more news once we talk to the oncologist on Tuesday.  Keep your fingers crossed and prayers coming.  

The Good, the Bad, and the Ugly

Holly had her 5th treatment on Monday (yesterday).  We also met with Dr. Rodgriguez regarding her latest scan.  The results were not what we were hoping.

The Good:  The cancer is receding, and progress is being made.  Her neck is pretty much clear of cancer.

The Bad:  She still has some cancer showing in her abdomen that is shrinking at a much slower rate, and the doctor suggested that perhaps they were a different mutation that grows slower and isn't responding as well to the R-CHOP treatment as other tumors did.

The Ugly.  Another 3 cycles will be needed, bringing the total to 8.  We were hoping to do a total of 6 cycles, but it looks like we will have 8, with the strong possibility of a a bone marrow transplant.

The bone marrow transplant the doctor suggested isn't the type that requires donors.  In this instance, Holly's marrow is fine.  Some stem cells are harvested from her bone marrow and stored.  Once the bone marrow treatment is completed it will kill off of her good bone marrow. Afterwards, her good stem cells are implanted to restore her bone marrow to full function.

The next set of plans are getting through cycle 6, then get a new PET scan to re-evaluate further treatment after the 8 cycles of R-CHOP.

Please keep her in your prayers.  We'll beat this thing, but it will be a longer road for her.

Also, let's hope this doesn't happen.

4th Chemo complete.

Hi all, sorry for the lack of posts.  There really hasn't been much to report.  Holly's fatigue continues to get a little worse each session, which is expected but hard to endure sometimes.  She has good days and bad.

On the progress front, we got the 4th session of Chemotherapy in the books.  In another 2 weeks, there will hopefully be a PET scan that *should* reveal no more cancer.  According to the fine folks at the James Graham Brown Cancer Center that is typically the case.  IF it is clear, then there will be 2 more Chemo sessions followed by radiation to hopefully fully eradicate the cancer.

Your continued support and prayers are appreciated.

Thanks.
Jeff

Chemo #3; PET scan results

Well, Chemotherapy session #3 is in the books, but its after effects will happen over the next 3 weeks.  Rumor is that this one will be tougher, but we'll have to wait and see.

We got Thursday's PET scan results back, and we can share those with you.  The doctor is very encouraged at what he saw after only 2 treatments.

The image on the left is from January scan, and the one on the right was from last week.  Note that the left image shows the heart as a "hot spot" but this is not anything to worry about, its just the nature of the scan.  Also, these images are in layers, and these are the layers that showed the most activity.

Holly's stress levels, though high, are a little lower after seeing this.  I think all of us feel the same.  Its nice to see progress being made!

PET scan, results on Monday

Not much to report other than Holly's counts were low last Monday (as expected).  She had a PET scan this morning, and hopefully we'll have results on Monday during her 3rd (of 6 to 8) chemo sessions.

Hopefully we'll have positive news to report Monday.

Keep your fingers crossed.

1st week doctor visit after Chemo #2

Holly went back in to have her levels checked this past Monday, Feb 17th.  Her WBC (white blood cell) count was low, but her ANC count (better measurement of immunity) was within normal range.  Since this was the second cycle and her counts were similar to the same time after the first cycle, we could establish a pattern of when and how she will react to chemo.  This helps a great deal so that she’ll know when she’ll feel bad, when she can go out and when she needs to stay in.  So far things really are going much better than expected, treatments will get a little more harsh each time, but she’s off to a very good start. They will be scheduling a PET scan the end of next week and we should get results back on Monday March 3rd, it’s just a progress check, they are still expecting for her to have 6 to 8 chemo sessions.

This is what her pattern looks like it’ll be, at least for now, Day 1 is chemo day on a Monday:

Her remaining chemo days are: March 3rd, March 24th, April 14th, May 5th.  If 8 cycles are needed: May 26th and June 16th.

Day 1-3 (Mon-Wed): ANC is up and she feels pretty good these days, just a little tired and food tastes and smells weird
Day 4-8 (Thu-Mon): ANC is up, but these are her worst days as far as how she feels
Day 9-12 (Tue-Fri): ANC is up, these are her best days because her ANC is up and she feels good
Day 13-19 (Sat-Fri): ANC is rock bottom but she feels ok, just a little tired (and isolated)
Day 20-21 (Sat-Sun): ANC is back up and she feels good

The highlights since the last blog are that Holly got to see her grandbabies the other weekend.  It had been about a month where she was used to seeing them several times every week. She said it was wonderful getting all her baby hugs!  Not only was she able to see her grandbabies, but we were also lucky to have our baby (Julia) come home from UT last weekend.  It had also been a very long month since the last time she was home.  We enjoyed every minute of it, and Holly got lots of hugs and kisses, almost enough to last another month before she sees her again.

Note, we thought there would be a PET scan this week, but they said they won't do it until after the 4th treatment, and Holly is scheduled to do between 6 to 8 sessions of chemo.

Chemo #2, done.

Grabbing some pre-chemo breakfast

Sorry for the long delay in between posts, but there hasn't been much to report other than a rash that has been slowly clearing up.  Today we did our second round of chemo, all in one day this time.  Everything went as expected with no ill side effects to report.

On the positive news front, Holly's white blood cell count has made a roaring comeback and is in the normal range.  It is still lower than it was prior to first session, but that was expected.  The staff was pleased to see her numbers looking well.

On the negative, the hair loss has started in full force last week, and we've been trimming it today.  Holly's obviously very sad to see her hair thinning so much, but as my brother said, you have to think of each hair that leaves as a cancer cell that dies.  Though, that's small consolation to the person losing their hair.

Chemo Session #2

Later this week is the PET scan and we get to see how well the treatment is doing against the cancer.  We've got our fingers crossed for positive progress.  The nurse was optimistic, saying that lymphoma reacts very well to this kind of treatment.

Oh, and since her immunity is stronger, at her request, we are celebrating by going to get dinner at Thai Siam, our favorite Thai place.

White Blood Cells Low

Yesterday, Holly's Monday appointment revealed that her white blood cell count was near zero.  Or to be exact, 267 out of a normal 12,500 (I think).  Anyway, its very low.  No visitors or trips to the mall for the little lady for the next little bit.  Oh, and no flowers please.  She has to stay away from flowers or any unpeeled fruit for awhile.  She is the most vulnerable right now until her white cell count increases.

We also found out that an extremely painful rash around her neck area turns out to be a yeast infection of her skin, and they prescribed something for it.  Kristin had already guessed it was a yeast issue when the steroid creme made it worse.  Hopefully it will improve in the next day or two.  It is extremely painful for her and she won't cook for me until it is resolved.  Please keep this fix in your prayers.  I need food.  :-)

Speaking of food, Holly's colleagues sent her over $600 in Schwan's gift cards.  She was blown away by their generosity, as well as all the other gifts she has received from friends and family.

FYI, Next chemo session is next Monday (2/10).  Hopefully her white cell count will be high enough to start the next round.

First follow up.

Holly and I went to the "facility" today at lunch to get her bloodwork checked.  While we were waiting in the lobby, we talked with 3 other individuals that were going through their treatments for leukemia.  One lady was returning from her 5th remission.  In other words, she went through the chemo process 5 other times that they thought they had it beat.  It really emphasizes how truly lucky we are that Holly's cancer is one of the milder forms and is so treatable.

We picked up about 10 cherry pies from McDonalds for the nursing staff, and they were very grateful.  It was nice to do for them, because they have all been so nice and supportive.  I think we'll do that every time.  Its only $5, but well worth the smiles we get.

After Holly gave some more blood, the nurse came by and went over Holly's levels.  Overall, she was very pleased.  She was able to tell that Holly had been drinking all the water she was supposed to as her kidney levels were very good, which is what they want to see.  The kidney is really stressed during chemo between the pills and the dead cancer cell that are being purged, so its good to keep water running through it constantly.

The worst of the nausea should be past for this round, and the hair should start falling out after this week.  Oh boy.

I fly out to Baltimore tomorrow, but will be returning Friday night and will be with her during our next Monday visit.  I'll see if I can get K or V to post H's progress next week.

Oh, we have had several friends bring over food, and it's greatly appreciated.  We have food coming out of our ears, and are very grateful for all the support you guys have for Holly.

Day 3 after Chemo (Friday)

Others have found that the 3rd day is typically the worst, so we held our breath today, but so far so good.  Her energy level is at a 4/10, and stomach is still 7/10.  She goes into her cleaning mode which is normal activity for her but has to stop every once in awhile and let her stomach settle.

I know what you're thinking, I should tell her not to move around, but the doctors want her to be active, so, she gets to be active.  I had to make her stop working on her PC around 6:30 pm last night to rest a bit.  She takes her job very seriously.

She was actually feeling well enough to ride with me for some errands and enjoyed the sunlight, even though it was 15 degrees outside.

I downloaded the "bald app" on my phone and showed her what she would look like.  Wasn't my most shining moment.  She offered to download the "dead" app and show me what I would look like if I posted the picture here.

Day 2 after Chemo (Thursday)

Holly slept in a bit this morning (which is good) and got up around 9'sh.  No bad events last night, she took a nausea pill before going to bed "just in case".  Her energy level is a 3 out of 10, and healthwise she fells she's a 7 out of 10 which is overall positive.  The dreaded effects haven't surfaced yet.  She's at her desk working as I speak.  Sorry, no pics.  She's getting tired of me pointing the back of my phone at her.

UV Sanitation Installed in HVAC.

On other news, I forgot to mention that KLM Mechanical was able to clean our ducts last week with an expedited schedule as well as install a UV "virus zapper" in our HVAC system.  Special thanks to KLM and my friend and the father of our son-in-law Scott, Tony for helping getting the process expedited.  Their crew even shoveled the driveway and sidewalk in case Holly had to go out.   I was out of town and was unable to do any shoveling nor was Holly after recovering from her port insertion procedure.

Also a big thank you to my father's company, ECI-IMS in Chattanooga that gave us a high tech bacteria and virus removal device that will also assist with keeping the air clean, as well as eliminating odors.  Odors aren't an issue, but I've seen this device before really clean up other buildings that smelled really bad.

Back to normal... for now.

For those wondering how Holly is doing, she was a little nauseous yesterday, took some meds.  Doing okay today.  She's getting onto her normal activities, working at her desk.  She complained yesterday that bread smelled like fish, and the newly washed sheets smelled like roasted turkey.  Just a sign of things to come I suppose.   I'm hoping I smell like rainbows or unicorns to her, but given my history, it won't be a pleasant scent.

Thank You!

Me watching Man of Steel while I get my cancer Kryptonite!

I just wanted you all to know how much I appreciate your love, support and prayers.  I can't thank you enough.  I've just ended the second day of my first chemo session and I feel great!  As I told Julia, the worse is behind me now that I'm in treatment, every day that goes by now means less cancer, and that is a great day!  I'm not going to enjoy losing my hair, but my brother-in-law Jim told me how he looked at it when he went through chemo - every hair lost means another cancer cell gone, what a great way of looking at it. So the next

And Treatment has Started

Many may view this as a horrible event to have to go through, but given all the possibilities and results so far, I was very happy that we were able to get Holly started on her treatment.  You can't fix it until you start working on it, and that is what we started today.

The first round is a two day cycle, with today being the first part of the "R-CHOP".  Today Holly got several bags of the "R" part, which is called rituximab.  It is not the stuff that causes hair loss, that's the CHOP part of the process.  We get that tomorrow, along with another dose if the rituximab.  The Rituximab is essentially an antibody that targets non-hodgkins lymphoma cells, so it is attacking the cancer as I am writing this post.

And the Verdict Is.....

I heard from Holly about an hour ago.  She had just had a port put in her chest which will act as a location to insert the chemicals during her Chemo sessions.  Afterwards she spoke with the doctor on the results.

Here is what we know at this point:

• Her bone marrow is clear; no leukemia thank God.
• She has masses on her neck, chest and in her abdomen.
• The masses are limited to her lymph nodes throughout parts of her body.
• This is considered stage 3 Lymphoma, and is still very treatable.

FIRST Oncology Appointment

More Paperwork!

So, Mom told me to "Make it upbeat!" I think she's crazy...but I'll try. ;) But really, our day started off kind of funny. After going the wrong way into the cancer center drop-off circle (but in my defense, it wasn't marked well!) and getting a tongue lashing from the parking attendant for going into said exit, we made it safely (is that considered safely?)! We got into the center, took the elevator to the second floor after hearing a nurse mumble something about "if it weren't for the time clock, I wouldn't get any exercise...", and got her registered. Poor Mom. I really hated seeing her sit there giving insurance information and her license for something like this. She should only be "carded" because she looks so young. I didn't get paid to say that. ;) On a side note, apparently The Jackson 5 is the band to listen to when you need to lighten the mood in

Appointment with Oncologist set.

We have an appointment with Dr. Herzig at the Brown Cancer center on Tuesday the 14th at 8am.  The initial date was going to be the 24th, but we were able to get in there sooner.  We don't expect to get a lot of news during this meeting, as we expect there to be many more tests to see what treatment is necessary.

Insight from my brother

My brother went through lymphoma about 8 years ago and shared with me his experience.  He allowed me to share his email:

Mine was large b-cell non-hodgkins lymphoma on the thyroid Stage 1  I had 3 rounds of chemo followed by 4 weeks of radiation (which was no worse than getting an x-ray).  Even though my tumor went from close to my heart into my neck, I was still given a greater than 90% chance of cure. (3 continuous years of remission).
Lymphoma is one of the few cancers that we are able to cure.  All the doctors will tell you the most important thing is a positive attitude.  So don't read the internet.  That will really terrorize you because they talk worst case so much.  So swallow any pride and take any and all help people offer.  If they say "What can I do?" ask them to help with a meal or two when you are too busy helping her to cook.  Assign them something when they ask.
If she get the similar treatment that I did. you will need little things that will make a difference later.

Pathology Results Complete

We are still waiting on a meeting/review with an Oncologist (should call sometime soon) but we did hear that the pathology came in and it was what was initially guessed at which is "Diffused Large Cell B Cell Lymphoma."

We still need to meet with an oncologist to see what is next.  We hope to do that this week.  We need an oncologist to fully interpret the results and determine the next steps.

Monday update

Not a whole lot to report.  We met with the surgeon as a follow-up on Friday as Holly was concerned about the swelling around the incision.  The surgeon, Dr Flynn said it was normal and looked to be healing nicely.

We did get a copy of the preliminary pathology which is not final by any stretch of the imagination, but the preliminary "quick" diagnosis is that the cells look to be large B type lymphoma cells.  If you have a medical background don't judge me on my misuse of the words, I don't have the paper in front of me.

The good news in this is that my brother had that type cell and was able to be cured with three 3 week sessions of chemo and radiation.  The bad news is that we still don't know if it is localized to the lymph nodes or if it originated from someplace else in her system.

While in the waiting room, I reached out to an oncologist that Kristin found.  We hope to hear back from them for an appointment sometime this week and hope to get the full pathology of the removed lymph node by Tuesday (hopefully).

The incision

Here's a picture of the incision.  I think it will heal nicely.  The stitches are underneath, and the skin was essentially "glued".

Ouch!

Welcome to Holly's Update Blog

Hi everybody.  This is my first post for a blog I set up to provide updates on Holly's progress.  As many of you know, Holly had one of her swollen lymph nodes removed surgically to perform a pathology on it.  There was concern that a needle aspiration style biopsy might miss some potentially problem cells, so this was considered to be the best approach.