Goodbye Hair

Since my first chemotherapy treatment on December 14th, 2012, we have been wondering when my hair would begin to fall out (my hair has not been long to begin with..).

This morning I was sitting on my bed, studying or reading.  Jordan was sitting next to me.  As I was focusing on my laptop, I was feeling my Saturday morning whiskers.  As a mindless behavior at times, I pulled a whisker out - and I felt no pain.  I realized that was weird - no pain!

I made a comment out loud about it, and then Jordan pinched some of the hair on my head and pulled.  Out it came...a whole clump...and no pain. (We were all a little grossed out by that! :)

For me, I did not want my hair to slowly fall out, clump by clump.  I made the decision early on that the minute it started to fall out I would shave it all off, and it would remain that way until it was time to all grow back in.  

So, this morning I shaved it all off.

My boys are so amazing.  They decided that they wanted to shave their heads too...as a show of support and love for me.  They are amazing, and I love them.

Chemotherapy - Round 1

On Fri, Dec 14, 2012 at 3:03 PM, <5099393200@vzwpix.com> wrote:
Brief update..a percentage of folks can have an allergic-type reaction to some of these drugs (that's why it's started slowly, and in the hospital). All is good. No reactions, and on track. Feel good. And Dr. Danko found that CT scan looked better than he expected, and heart is A-OK too. It's all good so far.

On Sat, Dec 15, 2012 at 11:19 AM, Brad Reimer <mindnbrad@gmail.com> wrote: 
Feeling pretty good so far. Three overriding feelings coming off the treatment yesterday..Amazement at all of the science behind this treatment--very grateful. Leery/anxious about what side effects might come, and when they might come-it's different for each individual. And, excitement about knowing that the chemo is now inside me, fighting and killing Lymphoma cells--that cure is in process!

More Learning, and my Amazing Kids

On Wed, Dec 12, 2012 at 10:18 PM, Brad Reimer <mindnbrad@gmail.com> wrote:

All,

Wanted to take some time to update you on my status and treatment, etc.

The following is from Mindy:

We learned more today about Brad’s lymphoma.  Again, Dr. Danko is amazing.  He takes time to explain, and draw pictures, and explain again so that we understand all that is going on with Brad. The labs/pathology reports from Brad’s tumors taken during surgery continue to give us information. 

With Diffuse Large B-Cell Lymphoma (DLBCL) there are at least three tumor types.  One is Germinal Center B cell-like (GCB), another is Activiated B cell-like (ABC), and the third is a group that does not have the same genes as the other two.  From what I understand, the differentiation is how the cells mature.  Brad has the GCB type.  The survival rate of patients with DLBCL whose malignant cells are thought to arise from GCB is significantly better than that of patients whose cells arise from ABC.  More great news that we are thankful for!

Brad’s labs show that some of the tumor has a component of Follicular Lymphoma. (I asked Dr. Danko about the different types of cancer and he said that is not a concern right now.)  Dr. Danko is asking a lab to be done on the IGH gene rearrangement of both the DLBCL and the Follicular cells.  Treatment and prognosis depend upon if the DLBCL cells originated on their own, or came from the Follicular cells.  So, we are waiting on more tests there.

Also, Brad’s tumor cells were tested for Ki-67 (“an antibody marker to a tumor antigen that can be found in cancer cells”).  When a tumor is tested for Ki-67, the pathology report will show a Ki-67 score. High scores (scores greater than 20%) mean that the cancer cells are growing and dividing at a rapid pace. Brad’s score is 80-90%...incredibly rapid.  It has been 4 weeks since surgery, and during that time the lymphoma cells have been growing and dividing at a rapid pace.  Dr. Danko ordered a CT scan so that we would have a baseline to look to with chemotherapy starting.  Also scheduled was an echocardiogram due to the fact that some of the chemotherapy Dr. Danko is looking at using has a 0.5-1.0% chance of causing heart problems.  Chemotherapy will go ahead as planned this Friday.

The rest of this is from me:

I am grateful for Mindy.  I have already expressed that one of the miracles and wonderful blessings I have found in this experience is a deeper and greater appreciation for my wife.  As we sat in the waiting room at CCNW today, there were a couple of people by themselves.  Who knows their unique, individual circumstances, but it made me consider what it would be like to be going through all of this alone.  For me, I cannot fathom it.  Mindy has been my rock, my scientist and researcher, my note-taker, my reminder, my support, my chauffeur, my listening ear, my perpetual go-for, and so much more.  Words cannot express how thankful I am to be by her side on this journey.

As you may recall, the evening/night before I received my bone marrow biopsy and got the chemo port put in my chest, I was feeling so good and strong.  I felt like I had turned a corner in terms of recovery from surgery, and was hopeful that that progress would continue.  Those two procedures in one day took it out of me for a few days, but our understanding was that once I got over that, I would maintain the progress previously experienced.  Well, that hasn't necessarily happened.  

This past Friday evening (the 8th) was the last time I needed to take Oxycontin or Hydrocodone.  I have not had significant pain ever since...which I am very grateful for.  I was dealing with some unpleasant side effects of those meds which we were looking forward to not dealing with anymore - and that has been good.  

The struggle in the past week, for the most part, has been abdominal discomfort.  Probably 20 out of 24 hours in a day, I feel a "pit" in my stomach.  It isn't pain necessarily, but just a constant discomfort.  There are times it increases (it woke me up very early this morning...I got a little more sleep but when I woke up for the day, it was pretty bad for quite a while), and there are times it subsides (yesterday afternoon/evening wasn't bad).  When that discomfort increases, I do not feel like eating, drinking, walking, talking...nothing.  But when it decreased like it did yesterday, Mindy was out running errands and I had her bring home a 6" Subway Club!  It was tasty! :)  And when it decreases I feel like I can be "normal" around the house....interacting with the kids, doing dishes, not having to lay down, etc.  It is great.  But after some time, the discomfort returns.

So, we were told a couple other things at our appt with Dr. Danko today...his nurse said that the chemo port is typically sore/tender for up to a couple of weeks.  We hadn't realized that, but this has been the case for me...it's always good to hear you're "normal."  (No jokes here, please..)  Also, Dr. Danko indicated that a likely cause of the abdominal discomfort may be those rapidly-dividing cells in my abdomen.  This is one reason he is anxious to get the chemo going.  I have been somewhat worried and anxious...they say a side effect of chemo is nausea, and my stomach is already not feeling well.  But he said that I may very well have a net effect of feeling MUCH improved within about 10 days after my first chemo treatment as the chemo starts killing those rapidly-dividing cells.  Let's hope for that!

Another thing we've been busy doing...risk of infection greatly increases after chemo due to the effect on the immune system, and the body doesn't heal as it normally does.  So in our Chemo Class they suggested we get any dental work done prior to starting chemotherapy.  So, Tuesday morning (7am) I got a cleaning, and this morning (7am) I got work done for a crown to be put on.  There is further work to be done, but Dr. Danko didn't seem worried about it today.  We'll know more on that later.

I've expressed how much I love and appreciate Mindy.  I am also so grateful for my children.  I love them so much, and am so thankful to live with and grow with these 5 amazing people.  The times we have taken to sit down and have discussions with them about all of this (multiple occasions) have been sacred to me (despite their occasional goofiness, which I think is part of how they handle their emotions surrounding all of this).  It is amazing to watch them take in information, ask questions, etc.  I am quite certain they are experiencing anxiety and fear (just like we all do at times).  I am also so grateful for the wonderful gospel principles we have taught them since day one, that they have the opportunity to apply at these times.  What a blessing.  What a blessing to understand the Plan of Salvation.  

What a blessing to know what faith is.  This past Sunday Mindy, Lena, and Brendan had colds and stayed home from church.  Before church started, Lena asked Mindy if she could call her Primary teacher to find out what lesson they were on that day, so she could study it at home (Wow).  Sister Driskill is wonderful, and told Lena which lesson.  Lena got the manual out, got some paper and other supplies, and went through the lesson.  But the most amazing part was on Monday evening, when she talked to us about the lesson...what faith is...hope for things which are not seen.  We can't see and don't know that Dad will get better, but we can hope for these things, and this can bring us strength and comfort.  I love my kids.

We love and appreciate each of you.  We tell you over and over...we feel strength because of your thoughts and your prayers.  It is a huge boon to us.

Brad and Mindy

Bone Marrow Biopsy and Port

By Brad Reimer — Dec 8, 2012 7:07pm

On Wednesday the 5th this past week, we arrived at Valley Hospital at around 7am. After getting checked in and "gowning up," the nurses and others prepared me for my bone marrow biopsy (put in an IV, etc.). I hadn't fully realized that Dr. Danko is the one that personally does the bone marrow biopsy. He showed up and we visited some. He has a great sense of humor. When it was "go time" they had me turn and lay on my left side. My nurse, Lou, was in charge of sedation for the procedure. I have to say that she did her job well...I don't remember much of anything in regards to the actual procedure. Mindy was able to be in the room the whole time, and she says that at one point I told them I was in pain. Lou "increased" the sedation (I don't know how, and I don't even know what type of sedation I had), and I didn't complain again.

They say that the prep for the biopsy takes much longer than the biopsy procedure itself. The procedure only takes like 15 minutes I guess. Mindy says that Dr. Danko inserted a large (straight) needle into my upper right butt cheek/hip area. He supposedly is able to get fluid out from the center of that bone (bone marrow). Then he inserts a "corkscrew" shaped needle of some kind, and actually chips off a piece of my actual bone. As I said, I don't remember anything about it...but my right butt cheek/hip is still sore.

So, as I "woke up" from the procedure I vaguely remember talking to Mindy about various subjects (emails from friends, a phone call from her brother, etc.), but as we discussed those things that evening, it appears I was not 100% conscious at that time.

Dr. Danko had said at our appt on Tuesday that I needed to have a chemotherapy "port" inserted beneath my skin, for the chemo treatments. We wondered about doing it Wednesday...while I was already at the hospital and fasting. So, as they were prepping me for the biopsy Lou made some phone calls and we got that ordered for about noon on Wednesday.

Shortly after the biopsy, they wheeled me into another room. Mindy was not able to be with me this time. They prepped me, and before I knew it, the port was in successfully. The, "before I knew it" refers to the sedation/anesthetic they used. I literally remember nothing from that procedure at all. All I remember is going back into the room where I started, where Mindy was waiting for me. I ordered some lunch, and we waited there for an hour or so to make sure all was well. That afternoon and into that evening I didn't feel much at either site (right butt cheek/hip and right chest/shoulder), but as the night came, the numbing medication must have subsided and both sites were quite painful. All through the next day, particularly my chest/shoulder was very sore. And there is/was bruising all around the site. We have not as of yet taken off the bandage/covering, but will this evening.

Tuesday night I felt like I was starting to feel quite strong, but Wednesday took it out of me again. I am glad I have from then until the 14th without any more procedures. With the pain in my chest/shoulder, I was holding myself pretty stiff (like I was after surgery), and so I feel like I need to "stretch out," and get comfortable again. I've been doing a little of that today.

Wednesday afternoon we went to the CCNW Valley office and attended a "Chemo Class." We brought Brendan with us. We were the only ones in the class...a nurse and an assistant ran a PowerPoint and spoke with us some. The nurse, since it was just us, wanted to get us out of there and home, and so she went through the presentation VERY quickly. In retrospect, very much too fast. Luckily we were left with a copy of the presentation and various other handouts which we can review prior to next Friday. She showed us the "Chemotherapy Suite" - 10 to 15 bed/chairs spread throughout this room, with a nurse's desk area. There were a half dozen or so people receiving their treatments. A few were asleep. It was interesting to see where we will be, and imagine what we will be doing.

Yesterday we called Dr. Danko's office for clarification on a few items. One of the things we asked about was the LDH test they did on the blood they drew on Tuesday. Nurse Jennifer indicated (as far as I remember) that over 200 is when they start getting concerned, and that mine was around 170. Totally normal. That was a big relief. As you may recall from a previous update, if that level was high, it would have given me another "point" prognostically, and would have put me in the 50% range rather than the 80% range (scientifically). Grateful for that. Also, they already had preliminary results back on my bone marrow biopsy (she said that was kinda quick to have that back already...usually it takes longer) and that no cancer was found in the bone marrow, and that my marrow was otherwise normal (no anemia, etc.). Also very good.

Yet again I express...we feel incredibly blessed. We feel as if Heavenly Father's hand has guided, directed, and comforted us, and we feel very grateful for that.

Dr. Danko, and Diagnosis

On Tue, Dec 4, 2012 at 10:52 PM, Mindy Reimer <mindyjreim@gmail.com> wrote:

Dear family,

Today Brad had his appointment with his oncologist, Dr. Danko.  We love Dr. Danko!  He is a kind and sweet man and took his time to share information and to educate us.  We look forward to having him on our side during this time in our lives.

Brad has Diffuse Large B Cell Lymphoma (DLBCL).  It is a common, curable, non-Hodgkins form of Lymphoma. 

I want to share with you what we learned today.  I know it’s hard to  believe…but I don’t have a medical degree :) so don’t quote me! 

Dr. Danko  taught us that our white blood cells are made up of granulocytes and lymphocytes.  When bacteria enters our body the lymphocytes sends off cells to attack the proteins attached to the bacteria.  These cells can clone and create a clonal population of cells.  When this occurs in the blood it is Leukemia.  When it is the lymph system it is Lymphoma…which is again what Brad has.  In non-Hodgkins lymphoma there are two grades: low grade and high grade.  Low grade lymphomas progress slowly and are not curable.  High grade lymphomas progress quickly, but are curable.  DLBCL is a common high grade lymphoma. 

There is an international Prognostic Index that helps doctors determine prognosis.  It factors age(ha ha Chad, Matt and Chris :), LDH levels (an enzyme in our blood), his physical status (is he in good health), his stage in the disease, and extranodal involvement (involving more than one node).

The index is scored 0 or 1 point for each factor.  Brad is less than 60 years old=0 points.  We are unsure of his LDH levels…labs where done today for that, but Dr. Danko scored him 0 points.  He is in good health=0 points.  Lymphoma stages of cancer are figured differently from the general way that we hear stages referred to in cancer.  Brad’s lymphoma is a stage IV…this meaning “multiple extranodal sites or lymph nodes and extranodal disease”=1 point.  And the final factor extranodal involvement=1 point.  Somewhat confusing…but overall he scores a 2 (without knowing the results of the LDH level) which gives him a prognosis of 80% survival rate.  If his LDH levels are higher than normal it would change his prognosis to a 50% survival rate.  

Even with all of that scientific knowledge, we are grateful to know that our Heavenly Father has a plan for us and that as we stay close to Him through prayer, covenants and the Spirit, we will continue to have peace that we are living His plan for Brad and us.

So, while around 80% of the cancer was removed during surgery, the remaining will be treated with chemotherapy.  Brad will begin chemotherapy treatments on December 14th and have three more treatments every three weeks following.  At the end of the first four treatments, he will have a PET/CT scan to determine the success of the treatments.  If the scan is clear he will have two follow-up treatments of chemo.  If the scan is not clear he will follow up with more chemo and more scans.  Remission is when there are no cancer cells present.  Survival or cured is when there has been 5 years of remission.  We have a chemotherapy class tomorrow that will help us understand more.  Also this week Brad will have a bone marrow biopsy and a port (a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick") put in his chest for easy access for the chemo. 

Brad did a little research and reading last week and shared with me some of the things he had been learning.  It was depressing.   Even in school, I never really liked percentage rates unless it was 100% :).  As I have been able to process my thoughts and feelings (as taught to me by my social working husband :) I recognize that the depressing and sad feelings that came are more about mourning the loss of our life up until a month ago.  Not that from here on out, life will be bad…just different.  And I mourn different.  And this is a longer journey than I had at first anticipated.  How grateful I am that our life before cancer though has prepared us for our life with cancer.  I love the gospel.  I love knowing we are children of our Heavenly Father.  I love knowing of and relying on His plan.  I love our Savior.  I love that He gets us…that because of His atonement He understands and can comfort and give us strength.  I love the Holy Ghost.  That our Heavenly Father can send him to guide, comfort and teach us.  And I love my B.  How grateful I am to go through this experience of his with him.  He is my favorite friend.  I love him so much.  And I get him for forever. :)

I am hoping this information helps you understand what we know and what we feel.

We love you all so much and are extremely grateful for your love for us and for your support.  Heavenly Father has answered prayers in our behalf.  We have felt it so powerfully.

Love you all

Brad and Mindy