Light the Night

Last night was the Leukemia and Lymphoma Society's Light the Night Event. It was a beautiful evening as we walked with other families affected by these blood cancers. The walk was held in a park where we walked on a paved trail with balloons that were lit from the inside. The hundreds of lit balloons making there way together in the dark was an amazing sight.

TEAM LORI

Audrey is strolling for her mommy!

Mimi and Ellie listen to the ceremony before the walk

It was a beautiful night! Ellie asked Mimi where the rest of the moon was :-)

Getting ready to start the walk

Lori with other survivors on stage

We're ready to light the night!

Boppa pulled Ellie in a wagon during the walk.

It was way after bedtime and she has a cold!

Audrey stayed awake for the entire evening and loved looking at all the lights around us!

Thank you to everyone who supported TEAM LORI in this endeavor. Our team raised a total of $875, which we will be used by the LLS to fund research to treat, cure, and prevent these diseases. As Lori said last night, we hope to do this annual walk for the next 30 years!

Stand Up To Cancer

For those of you who didn't see this last night on TV, there was a program on about cancer awareness whose goal it was to raise money for collaboration on cancer research. Colloboration between scientists will hopefully more quickly lead to effective treatments and a cure. If you are interested in learning more about this organization or would like to donate money, please click here. 100% of donated money goes to research.

We all know someone who has been diagnosed with cancer and our family has been dealing with Lori's diagnosis since April. We need to stand up to cancer so that someday this won't happen to our families.

Lymphoma update

Tuesday I had my blood drawn so that I would have the results in time for my oncology appointment today. At a follow up visit the things they are looking for are, of course, abnormal blood counts, and what they call "B symptoms", which are fevers, night sweats, weight loss (if only). Well, I knew I was okay with the B symptoms, but I didn't know how the labs would turn out.


Uneventful.

Everything looked pretty normal. My enlarged nodes had not increased. I'm not even anemic, which most of my life I have been. So there it is. Another 3 months of glorious denial. Another 3 months to forget about this crap called cancer. Another 3 months to prepare Ellie for the 2020 olympics.


Next appt is November 14th.

Oncology appointment

We have received good news again today! Lori got the results of the three types of testing done to determine the stage of the lymphoma, which I'll describe below. Since some people have asked about the difference between grade and stage, I'll explain that first. Grade describes how abnormal the cells look in a biopsied sample under the microscope and how fast the cells are growing. The grade for Lori's lymphoma was 1 out of 3, with 3 being the worst. This is why it is considered a low-grade, slow-growing (or indolent) type of lymphoma. We knew this from the lymph node that was removed 3 weeks ago. Stage describes how widespread the cancer is throughout the body. To determine this, Lori had blood work, a bone marrow biopsy, and CT scan...

Blood work - NORMAL!

Bone marrow biopsy - NORMAL!

CT scan - Although there were other enlarged lymph nodes seen in the axilla (armpit), femoral (pelvic) and probably abdominal areas, there is NO ORGAN INVOLVEMENT! Our greatest concern had been the spleen since it is a major part of the lymphatic system and an ultrasound two years ago had shown that it was enlarged. We were surprised and relieved to hear that it was NORMAL! And the nodes that were enlarged on the scan were not huge.

Our understanding is that these results classify Lori as a stage 3 because she has nodes enlarged below the diaphragm. Although in general this is considered a somewhat advanced stage, this is not unusual at the time of diagnosis for Indolent (slow-growing) lymphoma. The nurse and oncologist also explained again to us today that stage is not very important when predicting the prognosis of someone with Lori's type of lymphoma (as compared to a solid tumor cancer like breast cancer).

Lori does not need any sort of treatment now and will continue to be monitored. As I think we've mentioned before, treatment will likely be needed in the future, but the goal is to hold that off for as long as possible. The things that would result in treatment include: many very enlarged nodes; many and/or large lesions on organs; symptoms; and transformation of this lymphoma to a more aggressive type (the most concerning one of all). For now though none of these things are happening and Lori will have blood work done in 3 months and return to the oncologist then for follow-up. We think that she will need to have blood work and see the oncologist every 3 months for a long time (possibly forever). She will also have a CT scan every year.

I cannot even begin to describe how happy we were to hear all of this news! Yes, Lori still has cancer and she will always have cancer. BUT she is not sick and does not need treatment right now. I feel like 99.9% of the fear from the last 2 weeks has slipped away (for me; I won't attempt to speak for Lori about her feelings on this). I feel like I can relax a little again and enjoy these last two months of pregnancy.

Thank you all again so very much for the cards, emails, phone calls, meals, prayers, etc. during the last three weeks. We will continue to keep you updated on this, but thankfully it looks like we won't have a medical update for you until August - YAY!!

The Eve of Reality

BY LPC

I can't lie. I'm nervous.

Sure there isn't much that can top hearing the words "you have CANCER". It has been a rough couple of weeks. .....But it can get worse. I could hear the cancer is very extensive and I need to start treatment right away.

I was told since this cancer is so slow growing, it would likely be found in other areas such as the spleen and even bone marrow. That I have probably had this for years. In fact, two years ago, I had an ultrasound and it was noted my spleen was enlarged (did not send off red flags for anyone). But it was enlarged TWO years ago! I would be truly shocked if it wasn't in my spleen. Even so, I don't want to hear about bone marrow involvement, bone involvement or kidney and liver involvement. This would be reason for a poorer prognosis. 7 years vs. 10? 10 years vs. 20? I don't know. I just know the less it has spread, the better of course. And yet, I am preparing myself, and preparing my friends and family that the reality is - 70% to 90% of all cancer of my type is, upon diagnosis, found to be "late stage".

Am I still hopeful? Yes. But it will be hard to hear none-the-less.

This past couple of weeks I have felt fine physically and emotionally. Tomorrow will be the true test. When it becomes even more personal. When I know just what the "damage" is.

I don't want to do this, can someone please just wake me up?

........Deep breath. I can do this. I WILL DO THIS.


Dear God, I ask for only one thing. Strength for me and my family for no matter what comes our way. . ..........and while your at it, grant the same for all those suffering in this world no matter who they are.

Second opinion

Although I had hoped to spend some time today downloading video and pictures of Ellie here, this post will still contain some good news! Today Lori and I met informally with another one of the oncologists who specializes in hematology where we work for an informal second opinion. He spent a significant amount of time explaining the immune system and its mechanics to us since the lymph nodes play a key role in it. Much of it was a little over our heads! There were a few key points that we both walked away with though. I'll try to explain them below, but please keep in mind that this is what we heard and I can't guarantee that in my state of anxiety that I'm getting this totally correct!

1. Although some cancers have clear environmental risk factors (eg. smoking and lung cancer), follicular lymphoma does not appear to be one of those. The oncologist stated several times that Lori did nothing to cause this. So it wasn't something she ate, drank, or was exposed to. Although I work in cancer genetics I can't totally explain this, but I'll give it a shot! When DNA is copied to make a new cell, there are always mistakes in that new DNA. We have built in check points and genes whose job it is to correct those mistakes, but every time DNA is replicated, mistakes still happen in all of us. Some of those mistakes make absolutely no difference in the function of a gene or of a cell, but some make a huge difference depending on where the coding error happened. . The oncologist told us about a specific gene that was mentioned on Lori's pathology report. This gene's job is to help to regulate cell growth by increasing growth. In the case of some lymphomas, when the DNA is replicating there's a dyslexic moment and that gene is inserted in the wrong place right in the middle of the genes that are used to form antibodies. When that happens it causes certain cells to continue growing when they shouldn't, which is of course a problem and ultimately can lead to cancer. This isn't the kind of genetics that I do so I'm sorry if this doesn't make sense - it was totally clear when he was drawing it on a piece of paper today! Let me also say that the oncologist reassured us that this form of lymphoma is not hereditary. Although it is caused by genetic changes, these changes occur in single cells and are not passed on in the family.

2. For those of you reading information about lymphoma on the Internet, BEWARE! We asked about some survival data that Lori had found, which was pretty depressing. The oncologist explained that the introduction of a drug called Rituxan changed the face of lymphoma treatment and it was approved by the FDA in 1999 or 2000. So the survival data out there doesn't include the many people who have taken Rituxan and are doing great. Those numbers will be higher in the future as the benefit of this drug is included in the data.

3. We heard this before but it was nice to hear again - if/when Lori needs treatment now or in the future, the available options (including the one above) have been very successful. There's also quite an arsenal of treatments if one isn't as effective as we would hope.

We left feeling a little more uplifted today. We'll talk to this oncologist again after the staging studies are done and we've met with our primary oncologist for final recommendations. Tomorrow is the bone marrow biopsy so we again ask that you please keep Lori in your thoughts and prayers!

What we're reading

When we saw the oncologist on Friday, we mentioned that we had decided not to read anything on-line about lymphoma (which they agreed was a very smart thing to do!). The nurse practitioner did tell us, however, that we could go to the web site for the Leukemia & Lymphoma Society for reliable information. We've both spent a little time there and it is full of information, some we want to know and some we don't. For those who are interested in learning more, the web site talks specifically about the subgroups of non-Hodgkin's lymphoma - Lori has follicular lymphoma, which is considered one of the indolent types.

We also read an article on non-Hodgkin's lymphoma that was published today by the New York Times. The article focuses primarily on the rising rate of non-Hodgkin's lymphoma as well as the amazing advances in treatment. We don't think that Lori will need treatment now, but according to this article, if she does now or in the future, she will have many options that are considered successful and possibly curative. The oncologist has already discussed Rituxan with us as a likely future treatment.

All of this reading has given us even more hope than we felt on Friday and has of course added to our list of questions for the next visit! We are hoping that our next appointment with the oncologist will be Friday, May 2nd. In the meantime, Lori had blood work done on Saturday and will have the bone marrow biopsy this Wednesday and the CT scan on Monday, April 28th. We'll get the results of all of those tests at her next appointment and will find out then what the final plan is. We'll update everyone then.

In the meantime, life goes on so our next post will hopefully be about the nice weekend we had enjoying our family. Ellie was in a very performing mood today so we got some great video of her "reading" and singing. She also rode her tricycle for the first time on Saturday, which we'll post pictures and video from. And tomorrow it's back to work and "normal life" for both of us. We really needed the few days at home that we were lucky to be able to take, but it is definitely time for Lori and I to get back into our usual routine.

Words you never expect to hear

The past few days have been terrible ones for our family. As most of you know, Lori was diagnosed with lymphoma on Wednesday. We have gotten what we consider good news today about the prognosis, but first I'll start at the beginning...

A few months ago Lori felt what we thought was a cyst on the back of her neck. She went to our primary care doctor who agreed that it was likely just a cyst. She was not at all concerned and explained that they would just follow it to see if it grew. She did give Lori the name of a surgeon in case Lori became concerned or just wanted it out. Eventually, Lori was uncomfortable with the idea of this mass in her neck and she was having some pain in her neck and shoulders so we thought that maybe the cyst was sitting on a nerve. She made an appointment with the surgeon who then removed it the next day. Initially, the surgeon agreed that it seemed to be a cyst, but when she removed it the surgeon informed Lori that it was actually a lymph node. The surgeon was still very reassuring and told Lori that it was likely nothing.

Less than a week later, we found that out that it was very much something. According to the pathology report, Lori has B cell follicular lymphoma. I could never imagine the shock that we felt in learning this.

She.

has.

cancer.

In the most base form of denial, I kept saying to Lori that "lymphoma" must have some other non-cancerous meaning that we just don't know. Right? There's NO WAY that this could be cancer. Lori just sat there and cried.

We have a 2 year old. We have a baby on the way. We're young. This can't be happening. And if it is, how could life be so unfair?

The greatest unanticipated benefit of us working for a comprehensive cancer center is that everyone takes care of you and they do it very quickly. The people we work with took control of the situation immediately. While still in utter shock and disbelief, we were ushered down to meet with the nurse practitioner for the oncologist we eventually saw this afternoon. She walked us through the pathology report, talked about some of the treatment/management options, and was generally reassuring to us. This all happened within 30 minutes of us getting the news. The greatest gift we got that day was her time and her willingness to open up an appointment slot for us on Friday (today) with the oncologist. After speaking with the nurse, we left work feeling numb and just came home to adjust.

The past few days have been an emotional roller coaster and we have gotten little sleep. Sometimes we have felt optimistic - the surgeon used the word "surmountable" so it must be okay, right? Sometimes we have felt the greatest fear I've known. And throughout it all we had to be fully present for Ellie, which has truly been the most difficult part of all of this. Lori has had a hard time being with Ellie and thinking the "what ifs?" that I'm sure I don't need to spell out. The best decisions that we made during this time though were to just feel what we were feeling in the moment and not to get on the internet to learn more about lymphoma.

But today we met with the nurse practitioner again and the oncologist, Dr. R, and as I said before we feel that we have gotten good news. Our understanding of this is not complete, but I will paraphrase what I heard. The lymphoma is grade 1 of 3, which is great. It is also a slow growing, non-aggressive type of lymphoma. And because Lori had the lymph node removed and is not symptomatic, she will likely need no treatment. I think we felt 20 pounds lighter just hearing that! They have scheduled her for a bone marrow biopsy next week and a CT scan the week after to look for other involved places. They warned us that they do expect at least some other nodes to "light up" on the scan since this is a lymphatic cancer, but that it wouldn't change their plans and we would remain optimistic.

However, this is not something that is gone. The lymphoma is still present in other parts of the lymphatic system and there is nothing you can do to get rid of all of it. You certainly cannot take out all her lymph nodes. There is the possibility that this will become a more aggressive type or other lymph nodes may become enlarged, at which time treatment would be used. There are a few treatment options that they explained to us today and all of them have high levels of success. For now though this will be treated as a chronic condition and managed over the rest of Lori's (hopefully very long) life. She will need to see Dr. R every 4 months and will have a CT scan every year to monitor it. There is every reason to believe that this will be successfully managed for the next 30 years.

huge sigh of relief.

Although this diagnosis is not good and we wish we weren't suddenly thrust onto this journey, we are aware of how lucky we are. We were thrilled with the news today and feel so happy about the prognosis. We have a beautiful 2 year old daughter who understands nothing of this and just wants mommy to take her to the playground. We are expecting another wonderful daughter in 2 1/2 months. We have each other.

We will try to keep everyone updated about the results of the blood work, scan, and bone marrow biopsy. We will not see the oncologist for 2 weeks though to get the results and final recommendations. During all of this time, we have appreciated and will continue to appreciate your thoughts, prayers, calls, emails, etc.

We are doing okay. We will all be okay.